The Simple Life

Lemon Pie

2012-02-09T22:30:00.002-08:00

I don't often share recipes here, although cooking and baking are among my favorite activities when I have time for them. I Love the predictability of it...Measure these things, Combine them in this way, Be careful of this, and in the end you will have this Lovely creation. I don't have much predictability around me these days, so it is a nice change of pace.

For some reason the letter L (our Alphabe-Thursday target of the week) made me think of Lemon Pie. Maybe its because our Lemon tree has a Large crop of itty-bitty Lemons just waiting for me to pick them and use them up. It stirs up Lots of fond memories.

I first discovered this recipe in the pages of a children's cookbook that my mom handed down to me. I don't think we ever made this recipe when my brother and I were growing up, but just handling the book brings back memories of the days when Mom decided to let us take turns cooking things each week. Pocket sandwiches, frosted meatloaf, and cornflake chicken I know we tried, among others. When I discovered the lemon pie recipe I was looking for something simple that I could prepare with the child. She was a little over five at the time, and we were smack in the middle of the most challenging time that we had ever experienced with her. Her language was at 2-3 year old level, as were her fine motor skills and attention span. The twins were a year old - less physically needy, but demanding their own share of attention. The child was still pretty angry at me for disappearing on her at the time of the twins' birth, and I was having a hard time reconnecting with her because of her aggressive behavior toward me and her siblings. It was a mess, and we were desperate for help. In answer to my prayers (yes, really) God brought us under the teaching of two extremely talented and service-hearted women who helped us learn so much about how to reconnect our fragmented family, and support the child's behavior better at home, and then in every other environment we took her to. One of the keys was finding ways to meaningfully engage her in activities, especially with me. So I was trying to find an easy recipe that we could do together from beginning to end.

We started by picking lemons from the tree. Then hand over hand she helped me zest and squeeze out the juice. Together we whisked the ingredients together and poured them into a prepared crust. Throughout the experience she let me touch her, help her, encourage her, and enjoy her. All of these had been difficult for many months on end. I was anxious the whole time, just waiting for her to get frustrated or bored and explode, but she stuck with it the whole time. Something so simple, but to me a precious touchstone anytime things start getting hard again. I now trust that we'll be able to work it out. Every time I make this recipe I remember that day almost three years ago, and I smile. Here's hoping it brings you some smiles, too:

Creamy Lemon Pie

Lemons
1 egg
14 oz. sweetened condensed milk
frozen whipped topping, thawed
9 inch graham cracker crust

1. Prepare 1 teaspoon lemon zest.
2. Prepare 1/2 cup of lemon juice.
3. Beat egg in a medium sized mixing bowl.
4. Add sweetened condensed milk to egg.
5. Add lemon zest and juice.
6. Stir until the mixture starts to thicken.
7. Fold in half of the frozen whipped topping.
8. Pour the filling into the graham cracker crust.
9. Cover filling with remaining whipped topping.
10. Freeze the pie until firm.
11. Garnish with extra zest or a slice of lemon.

Adapted from the Better Homes and Gardens "New Junior Cook Book" (1979) page 92. [This is probably the Old Junior Cook Book by now...]

Amazing that something so sour can make such a sweet memory. When life gives you lemons...

Sunday Digest 40

2012-02-05T23:45:00.000-08:00

I want to let you all know about several interesting articles I've come across in the last couple of weeks. Check out these links...

1) I have Autism Speaks in my facebook feed, and the title of this blog entry grabbed my attention. I am always interested in adult siblings' perspective on autism as I begin to look ahead to our children's relationships.

2)The link above is a response to another blog post which is a call for more civility among the autism community. I have to say I agree with the original post...if you've ever checked out comments on one of any controversial (or even not controversial) articles on autism, the rhetoric and diatribes become quite disheartening. I can't get into any of that, really. I have my own opinions on all of the controversies, but I recognize them as just that - opinions. I could never claim them as facts to bludgeon another parent with an alternate view. Perhaps I am not cynical enough, but it seems to me if we could put aside our differences we might make more progress in researching and advocating for individuals affected by autism. Isn't that what we all want?

3) My husband pointed me to this article from parents.com. Though I am familiar with most of the issues explained by this "Alphabet of Asperger's," it is really helpful to have the child's perspective on each of these topics. Our daughter looks a lot like an Asperger's child these days because she has made a fair amount of progress with her language, but she doesn't have the language skills to explain her behavior or preferences like Nick does in this article. For instance she also seems to prefer to be at the head or tail of a line. I always thought she just wanted to be one of the title positions (both have special jobs to do at our school) but maybe it is also because she feels "crushed" and needs some open space on one side.

4) There is a lot of buzz out there about the new definition of autism per the latest DSM update expected to appear May 2013. This article in the New York Times suggests that the new diagnostic criteria will "miss" a lot of individuals who currently "fit" the diagnosis. I haven't studied this very closely, though I probably should soon since we are right at the cusp on some of these issues. To handle things more even-handedly than the alarmist news media, I suggest starting here at my blogging friend Autism & Oughtism's take on the whole issue. She does her homework on these things. I should SO follow her example in this.

5) We watched most of the Superbowl yesterday, and the most interesting "personal interest" story to me was the story of Steve Gleason, a former professional football player now diagnosed with amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig's Disease.) He has started a foundation called "Team Gleason" that helps other ALS patients improve their lives and reach for their goals. He brought two such patients to the Superbowl - a once in a lifetime experience to be sure. You can read more about Team Gleason here.

Book Review - The Runaway Bunny

2012-02-01T22:20:00.000-08:00

This is probably a classic, but we checked it out from the library for the first time this week, so it is new to us. Little girl picked it out on behalf of the child (who was at school but asked us to get a book for her, too.) The author, Margaret Wise Brown, is probably best known for the book "Goodnight Moon." She seems to have a mild fascination with bunnies, and this alone has made her the target of humorous parodies. Be forewarned that "The Runaway Bunny" is unashamedly sweet. If that sort of thing makes you roll your eyes and look for the nearest exit then I guess this book is not for you, but if you want to start a conversation with your kids about how much you love them and how you will always be there for them...check it out.

The story begins with a little bunny who wants to run away. (Know any kids that have threatened to run away?) He informs his mother of his plans. One by one she meets his escape routes. If he vows to turn into a sailboat then she promises to be the wind that moves him across the sea. If he becomes of fish then she becomes a fisherman luring him from the water with carrots. One of the best pieces of the book is the pictures by Clement Hurd. In each scenario he presents a two page full color spread showing the mother patiently meeting each persona the bunny tries on. I particularly love the bird imagery in which the mother bunny becomes a tree for the bunny-bird to come home to. The sailboat is also quite touching. In one last ditch effort the bunny decides he will turn into a boy and run into a house. The mother says she will be the mother in the house waiting there with a big hug for him. The picture of this scene would fit right into the pages of "Goodnight Moon." The little bunny realizes this last effort is basically where he's at anyway, so he'll just stay put after all. "Very well, have a carrot," replies the calm mother.

Perhaps every child/parent relationship has its moments when one or the other wishes they could run away. I know I've been there myself, on both sides. I think what struck me the most about this story is the effective portrayal of mother love. The love that says,"No matter where you go or what you do I will be there, and I will be on your side even when you think I'm not." I know I want my children to feel that kind of security from me. Books like The Runaway Bunny create an opportunity to sit with your child at the end of a hard day and tell them, in so many words, "I love you and I will be here."

I want to know how many of you have already read this book and love it...and I want to know what other sweet books you read when you want your children to feel your love right down to their toes.

Trisomy 9

2012-01-21T23:36:00.000-08:00

Several months ago I started a series about Trisomy genetic disorders. I'm just getting back to that series after taking a brief break. You may want to refresh your memory on what Trisomy is and how it occurs. I've also written about Trisomy 8.

There are three forms of Trisomy 9:

Full Trisomy 9 is the most severe form in which every cell has three copies of chromosome 9. In most cases the developing embryo is not viable and the pregnancy will end in the first trimester by miscarriage. Some babies with full Trisomy 9 survive until birth, but only live for a short period of time.
Partial Trisomy 9 involves an extra portion of chromosome 9 is included in each cell. You can get an idea of what that might look like here (scroll down to diagnosis). Life expectancy with this form of Trisomy 9 varies widely. This form is generally more rare than full and mosaic forms.
Similar to Trisomy 8, Trisomy 9 often occurs in a mosaic form in which some, but not all, of an individual's cells have three copies of chromosome 9. Depending on the severity of medical challenges the life span of individuals with Mosaic Trisomy 9 can be shortened dramatically.

Statistically, individuals with Trisomy 9 share several characteristics including medical issues, physical challenges, and behavioral traits. Each affected individual is unique and should not be "expected" to fit a certain developmental profile, but some common challenges include: low birth weight, congenital heart defects, global developmental delays, cognitive challenges, cranio-facial differences, and low muscle tone.
For more information on Trisomy 9, check out the following links:

a fairly personal view from one family is here
links to several other resources are here
a more clinical view
break out the tissue for this video about some girl scouts reaching out to one little girl with trisomy 9 mosaic syndrome.

It's Raining...finally

2012-01-19T15:51:00.001-08:00

Here it is January, and the dreaded rain has finally come, only now that it's so late to show up it's more to be desired than otherwise. The only thing I like less than a Rainy Winter is a Droughty (is that a word?) Summer. I don't know if the rain is here to stay or not. I know the forecast for the next few days is wet. More than a few days "trapped" Indoors and my kids start to get out of whack - and so do I - "Cabin Fever" at its worst. So I thought I would brainstorm for myself, if not others, what we can do on these lovely wet days in front of us...besides watch TV, I mean. Meanwhile we're celebrating the letter "I" because it is time for another round of:

Imbibe games. We got some really lovely preschooler friendly (no reading, no complicated rules) games for Christmas and Birthdays this year. We already had Candy Land, Shoots and Ladders, and Cootie. Now we have Hi-Ho Cherry-O, Monkey Dunk, and Don't Break the Ice added to our collection. We also have a couple of "concentration" games. These are all easier for the child to master, too, and she loves to be In charge of the game. The kids love to play these and usually once I get them started I can even sneak out for a round or two.

Invest in puzzles. Jigsaw puzzles are great, too, for problem-solving, visual-motor coordination, fine motor skills, and ample opportunity to layer on the praise and self-confidence. They require a little more supervision around our house since my kids love to mix the pieces together and use them as mini-frisbees and such. Keep an eye on all of this.

Images in paint. My new favorite art activity for the kids is watercolor. With a heavy, broad-bottomed cup of water an inexpensive brush, and some paper - scratch or otherwise - some pretty impressive art can occur with minimal input from Mom. Clean up is pretty easy, too. Rinse the brushes and throw the cups into the dishwasher. Put the masterpieces somewhere to dry and voila, we're ready for the next activity.

Investigate outdoors. At the first signs of rain my kids are usually eager to get out in it, believe it or not. The sensation of fresh water bouncing off their skin is Irresistible, it seems. Last I checked children don't melt. We have nice raincoats and boots that were just made to get wet, and even if their regular clothes get a little wet, what's another load of laundry compared to some fresh air and exercise?

If it sounds like I'm giving myself a pep talk, I am. I've mentioned before that the long rainy days of Winter can get the best of me. This too shall pass, but until it does, I want to remember these gray days as opportunities to make fond memories, not as days endured with clenched teeth.

Got any more Ideas for me? Please pass them along by clicking on "comments" below. Thanks! Don't forget to check out the other creative "I" riffs here.

Sunday Digest 39 - Liebster Blog Award

2012-01-15T21:17:00.001-08:00

[portions in italics added 1/16/12 after reading comments and following a few links...]

So one (actually two) of my few, but faithful, followers nominated me for the Liebster Blog Award. Thanks, Rose-Marie! and Autism & Oughtisms! This award honors all of us hard-working, consistent-posting, just outside the limelight bloggers. Specifically blogs with less than 200 followers. Part of the honor is passing it along to five other bloggers that haven't hit the big time - yet. So today's digest will be pointing you to a few bloggers that I follow who you should definitely check out...later on you'll be able to say, "I knew them when..."

How funny that I happen to be posting this on Golden Globe night... Envelope please...And the Liebster goes to:

1) A Wish Come Clear - OK I may be cheating. I don't know how many followers this blog has...it's actually surprising how many blogs *don't* say how many followers they have. Ah well. Caroline McGraw contacted me recently...she may do a guest post here soon if I can get my act together...and she has perspective that I need. Her brother has special needs and she now works in a community with adults with special needs. I'm just getting to know her, but I can already tell she has a lot to teach me.

2) Not for profit, but for JOY! - Everyone can use a little more joy in their life, right? Stacey and I seem to struggle with the same stuff - juggling everything that being a mom and wife means and finding time for ourselves somewhere in there too...multiplied by having a child with special needs.

3) eSpecially ben - VMI shares touching stories and artwork from her special son, Ben. I think I first found eSpecially ben through Magic Marker Monday at 5 Minutes for Special Needs. Very inspirational.

4) Delayed but not DENIED! - The name says it all, so does the verse on the blog banner, John 9:3. I think maybe I like Territory Mom's posts most because we live in total suburbia and she gives me a dose of farm life along with inspiration.

5) Janet Ann Collins/Onwords - I have met Jan IRL and she has a lot of experience that has been helpful to me. I also really enjoyed reviewing her book, Signs of Trouble. Much of her writing involves individuals with special needs, though she also touches on other subjects...all with a sense of humor and care for others.

So those are my Liebster awards...off to notify the winners. I should also note that many of these bloggers "follow me back" and I really appreciate the reciprocity. Stay strong, ladies! Here are the rules to pass along the award:

Show you appreciate the blogger who nominated you with a thank you shout out!
Nominate 5 other blogs, who have 200 followers or less, by leaving them a comment.
Post the award on your blog
Keep up with the blogs you've given the award to...

And I guess in some versions there are questions you're supposed to answer. Many people do this with great wit and wisdom, but since this is tacked on I'll be short and sweet, and maybe mildly amusing:
Favorite color - dark green and blue - someone has to balance out all the yellow my husband throws around
Favorite animal - elephants - they are so big, and so amazing
Favorite number - really? people have favorite numbers? Five I guess - that's the date of my anniversary, my birthday, and the number of people in our family. There.
Favorite drink - since giving up sodas blueberry tea - yum - hot or iced love it.
Facebook or Twitter - both, but mostly Facebook
What is my Passion - well now that is a very interesting question that I've been thinking about a lot lately...Learning, Solving Problems, and Helping Others seems to be the theme of the day
Do I prefer giving or getting gifts - I find both ends of the gift thing to be stressful, but I guess I prefer giving because when I get I have to write thank you notes and since I don't usually get around to it that is guilt inducing.
Favorite Day - The first day of Spring. I love Spring.
Favorite Flower - to smell : Jasmine; to look at : orchids and passion flowers.

Book Review - The Interrupting Chicken

2012-01-11T22:15:00.000-08:00

Dinner conversation at our house these days is an event to witness. Everyone has something to say, even if it is not relevant to anything, often all three children are talking at once. I try to moderate:

"It's Sissy's turn to talk, please wait."
"Make sure no one else is talking before you talk."
"Mommy can only hear one person at a time."

I am not always this calm about it. The child hates being interrupted and because of her language processing issues it takes her a while to figure out what she wants to say. If she is interrupted she has to start back at the beginning (yep), and then she has to figure out what she wants to say all over again. You can see why it is upsetting to her. Meanwhile her social skills haven't quite reached the level of knowing when she is dominating the conversation. She rattles on and on and her siblings just want to ask for more bread. Fun times. Really.

I asked for some help from our Speech Pathologist at school, and she recommended this fun story about interrupting. I'm not sure it is quite what I was after, but Interrupting Chicken is a really cute story. The little red chicken is all ready for bed but she wants a bedtime story. Papa agrees to read on the condition that little chicken will not interrupt. You can tell they've been through this before. "I'll be good, Papa." Papa tries three different familiar stories, and each time little red chicken interrupts and "ruins" the story. Papa gives up in exasperation. He is more sleepy than little chicken. He decides to turn the tables and have little chicken tell the story. So she writes a story and reads it to Papa, who interrupts, "ZZZzzzzzzz." Finally we see them snuggled up together fast asleep. This reminds me of our family. Daddy often does the bedtime stories and can read himself to sleep quite easily. Meanwhile the kids are still wired and ready for action.

Taken as its own story, this is a great book, as evidenced by winning a Caldecott Honor Award. The text is engaging and easy to read. The illustrations draw you into the story until you feel like you are in little chicken's room trying to get her to sleep. I really like how the three familiar stories are brought in both in text and illustration. I think it helps the reader understand the impact of the interruption.

For my purposes, I'm not sure this is quite what we need. First, the book isn't about a conversation, but story time. Though not perfect, our kids have gotten a lot better about sitting and listening to a story. All of those trips to the library are starting to pay off, I think. My second hesitation with this book is that there's no clear consequence to little chicken when she interrupts. In fact she kind of gets her way because she wants to stay up later. That's the kind of message I don't want my kids to pick up on. I want them to learn that interrupting is rude and reaps trouble.

So I'm still looking for a tool to help teach my kids polite conversation skills, but if you want a fun read, check out The Interrupting Chicken. If you know of a good book I should check out, let me know in the comments below.

The Year 2011 in Review

2011-12-31T17:40:00.000-08:00

At the beginning of 2011 I did a post detailing my goals for the year. I decided I should do a retrospective post here at the end of 2011, and maybe that will inform my goals for 2012...So here is each goal with my grade and comments for each.

Get organized - Well, no. I made a good effort at the beginning of the year, and depending on the day had some surfaces cleared and progress made on others, but if you looked at my desk right now, organized would not be the word that comes to mind. It is really hard to get organized when there are four other people in the house working in the opposite direction. To keep plugging away at this is basically to bang my head against a wall repeatedly. For 2012 I think I will focus on keeping the spaces that I use the most neat and tidy, and try to help at least three of the four people I live with learn to clean up after themselves occasionally. C for a good effort.

Get a shower. Though it didn't translate to earlier bedtimes or waking times as I wanted, I did grab a shower more frequently than previous years. I have proven to myself that it can happen when I really want it to, which is a step in the right direction. B needs improvement.

Improve my writing. So I never got around to the 31 day challenge I had intended to, but I did something else instead. In addition to my writing here I'm exploring options that might actually pay a little. That would be nice. Part of one of those options included taking two writing workshops, which was great fun. I even learned a little about SEO. In 2012 I just hope to find more time to write about the things I am passionate about, and in particular to return to posting here more frequently. A- get back to work!

Make my husband's lunches more interesting. Did you know that it takes just as long (or longer) to make a sandwich as it does to fill a thermos with yummy homemade soup? It's a lot of fun to mix different foods into the lunch time grind for my hubby. He seems to appreciate the extra effort. A+ Keep it up!

Get a clearer vision for who God wants me to be. So my ongoing study of Proverbs 31:10-31 (yes, I will get back to that series soon here) has helped, I think, to keep my attitudes in check and my priorities straight. There will always be a lot to do, but to do it well, in an attitude of service and humility is the goal. To hear the child already, in quiet and calm moments, tell me what a good mom I am, that is what I'm after. A- keep at it!

Clearly there is more to do. May God's grace cover the shortcomings of 2011 and His strength lead us into 2012. Happy New Year!

Did you reach your goals in 2011?

Ability Awareness - Part 2- Building Peer-Advocacy

2011-12-23T15:08:00.000-08:00

We are continuing our series on Bullying. You can start from the beginning of the series here. This post also continues the story from Shelly, a friend of mine from our local Special Needs Parents group. When we left off, Shelly was just about to speak to her son’s 1st grade class to explain her son’s autism. To read part one, click here…then come back and continue reading…

...I had printed off four full color 8x10 photos of my son: swimming in the deep end of the pool with grandma, playing iPad games with a friend, at the arcade playing a driving game on his uncle’s lap, and standing around a fire ring roasting marshmallows with a group of friends. I held up the first photo and said, “How many of you have ever been in a swimming pool?” They all raised their hands. I explained how my son had learned to swim last year and was in the deep end in that photo. A few kids said, “Oooooooh, the deep end.” I then held up the next photo and asked, “Have any of you ever been to Lake Tahoe?” all hands went up again. I explained that this was a photo of my son and his friend playing a game on the iPad on our vacation to Tahoe. One of the kids whispered, “He has an iPad? Wow, that’s cool!” I did the same with the other photos. The affinity the kids had for my son was palpable. I said to them, “Well, many of you have done the same things that he has done and you are a lot like him in that way, but there is one way that he is different from you guys. He has something called ‘autism’.” Everyone’s faces scrunched up. I had them repeat the word. I told them that when you have autism sometimes you have a hard time making friends and you can’t always say what you want. You might do things like make loud noises or stand up in the middle of circle time and be silly when it’s really time to be quiet. I explained to them that my son was born this way and that the doctor’s have no idea why. That even though he looks just like the rest of the class his brain is a little bit different than theirs. I told them to remember that when he makes noises, or maybe if he hits himself, he isn’t doing those things to try to make others upset, but that sometimes he just can’t help it. I told them that they could help him by being patient with him and understanding. We talked about using only a few words when talking to my son, giving him a choice between two things when they’re out on the yard (want to go on the slide or the swings?). I asked them if they thought they could do that and I got a resounding “Yes!”

That night at our Parent Faculty Club meeting my son’s mainstream teacher came up to me and told me what happened after I left. She said that after our lesson that afternoon the class went up to the science lab. While the science teacher was talking to the class, my son became restless and stood up. She said that the boy next to him then stood up beside him and whispered in his ear, “Ok, it’s time to sit down now.” and then sat down with him. She said he sat there and patted my son’s arm until the lecture was over and that he remained calm the rest of the time.

Tears streamed down my face as she told me this. She said that she saw and felt an immediate difference in the children after we left the classroom that afternoon and she was so glad that I’d agreed to come. She went on to say that the kids feel a real sense of responsibility toward my son now, that he is “one of them” and to be looked out for. A week later I got an e-mail from a mom saying that my son had come up as the topic of conversation at their dinner table. Her son now knows how to interact with my son and he feels at ease about this. One little girl even approached me on recess duty saying that she’d introduced my son to two new friends on the yard. She was so proud of that fact and I thanked her profusely.

That lesson took a total of 16 minutes and yet it has had an immeasurable effect on those children and their families. I hope that anyone reading this who has special needs children of their own will be inspired to help raise awareness for their own kids in some way. I feel so blessed to have been given this opportunity and am grateful for the understanding staff at my son’s school. It’s one of the best things I could have done for my son.

Special thanks to Shelly for sharing her story, and being my first guest post here at The Simple Life. Feel free to ask questions or leave comments below.

Ability Awareness - Part 1 - Building Peer-Advocacy

2011-12-19T10:49:00.001-08:00

As we continue our series on Bullying, I wanted to share this success story with you. This story is a great example of how to foster peer-advocacy for children with special needs. The author of this piece is Shelly, a friend of mine from our local Special Needs Parents group. Shelly is a former teacher (Kindergarten, 4th and 5th grades) and has her Masters Degree in Early Childhood Education. She is the mother of a 6.5 year old autistic first grader. Shelly devotes her time to her son and advocating for our local Special Needs community, and also enjoys sewing and quilting. I’ll be posting her story in two parts…

My son is six and a half. He is autistic, with a severe speech delay and just started first grade this fall. He is in a Special Day Class and gets mainstreamed into a general education class for a few hours of the day with a full time aide. He is not yet aware of his special needs, but his 1st grade peers are more socially savvy, so I was relieved when the phone rang during the second week of school with a surprising invitation.

Our school psychologist was calling to say that my son’s mainstream teacher had requested that he do an “ability awareness” lesson with her class regarding my son’s autism. He asked if I would like to be involved. I went silent for a second - in total disbelief - at that instant my heart was so full. I was touched that he was calling to ask me this! He explained that as a school psychologist he has been asked many times to do this and knows that some parents prefer anonymity and others like to be involved and wanted to check in with me about my comfort level. The plan was to read a story to the class to set them up for understanding about special needs: how we are all the same but that we are also different at the same time. After that I would have time to discuss my son’s specific needs. The lesson was set for September 7th. We hung up and I immediately began to think of what I’d say and do.

It was a nerve-wracking week for me. I spent a lot of time thinking about how to explain autism to 6-7 year-olds. How could I make it real to them? I would have only about ten minutes to speak and wanted to say it all without putting them to sleep. I called on the help of an autism interventionist friend of mine and my son’s former preschool teacher. They helped me work out the content and flow of what I should say.

The night before, I couldn’t sleep. It felt like the first day of school and I was a nervous wreck. I went into the classroom that afternoon with the school psychologist and an Instructional Support teacher. The teacher began her story. It was a 1992 Sesame Street book called, “We’re Different, We’re the Same” originally intended to illustrate racial harmony. It was a cute story, however, and set things up nicely for me. The psychologist segued further by talking to the students about how they are all a team in their classroom and how even though my son isn’t always in their classroom, he’s still a part of their team. He said I was there to tell the kids a bit more about my son and then turned it over to me….

Sorry to leave it here, but this is the best place (really) to break the story. Come back in a few days to read Part 2.

Bullying Digest - special edition

2011-12-11T11:30:00.000-08:00

This is the third post in my special series on bullying. The series starts here. I wanted to share some links with you to resources that I have found helpful on the topic.

1) An IRL friend of mine who also has a blog has been learning about bullying for some time now, both from books and, unfortunately, IRL. I am posting two links from her blog that were really insightful for me to read. The first post helps explore the reasons that a bullied child is bullied. Turns out it's not necessarily because the bullied child is shy or withdrawn...those may be the effect rather than the cause.

2) The second link from Adventures of the Maffeoberries talks about the role of the bystander, and why I feel peer advocacy is such an essential piece to support our kids.

3) I wanted to let you know about a great organization I learned about through the twins' preschool. It is called KidPower. They are worldwide. Look here to see if there is an "office" near you. While their focus is not solely focused on bullying, they do work with children of all abilities to help them learn to be safe. They teach them what THEY can do when they find themselves in a sticky situation - from getting separated from mom while shopping to dealing with the playground bully...self-advocacy at its best. I attended a brief workshop about a month ago and it made a big impression on me. I'll be exploring some of their resources more soon.

4) The IAN project is conducting a survey about autism and bullying. I first learned about the survey through the Autism Speaks Blog. You can learn more here. In order to participate in the survey you need to register with IAN.

That's it for this time. As I gather more resources I will be sure to pass them along. If you visit any of these sites, thanks for mentioning that you found them through The Simple Life.

Defense

2011-12-01T23:00:00.000-08:00

This is the second in a series of posts related to bullying. The series begins here...

There are a lot of ways to head off and respond to bullying. I will highlight some Defensive tactics here and Dig into these in more Detail at a later Date:

Self-Advocacy - This is the foundational attitude you ideally want your child to have. It says, "I am valuable and worthy of respect. There is no reason anyone should treat me badly." This attitude may prevent bullying simply because bullies may pick out targets who seem vulnerable. This can lead to a negative cycle. If your child is still targeted, self-advocacy will at least impel your child to seek help from others. Self-advocacy skills, like many social skills may not come naturally to children with special needs. There are resources to learn these skills, however. I'll be sharing some what I've run across in the following posts.

Peer-Advocacy - The next best defense is a group of peers that will not stand by and allow bullying to occur. Bullying persists in part because bystanders allow it to continue. There are several theories about why that happens which I'll try to follow up on in future posts. Helping your child establish a circle of friends who will stick up for them is vitally important. We'll talk about how to make that happen, too.

Supervision - This may be one of the weakest links in our culture. There simply aren't enough adult eyes per child. I have seen in our own school that even when there are several adults on the playground (at drop-off and pick-up in particular) they are distracted and not observing what the children are doing. You can't catch everything, but the more you can be present and engaged the more you will know what your child is facing and how they are reacting to it. You'll see for yourself what skills they need to learn. I have to be clear here that I'm not talking about helicopter parenting here. I think it is important to provide "just-right" support for your child. For my daughter I can now watch her with peers from a distance - reading her body language and eavesdropping, if possible, to know when I need to step in and give her some support. This is how I know that some children already regard her as "odd" and will use any opening they find to verbally outwit her and highlight her differences.

Policy - By itself, policy is ineffective, but it is still essential. Make sure you know your school's rules and what procedures they follow if bullying occurs. What definitions do they use? How are the rules enforced? What is the communication chain? What documentation do you need?

These concepts are just an outline of the various defensive strategies you need to consider if you're concerned about bullying or know that it is occurring.

Which method has been most essential for you and/or your child?

This post is linked to Jenny Matlock's Alphabe-Thursday blogfest. You can see the other creative responses to the letter D here.

Book Review - the show-and-tell lion

2011-11-23T07:39:00.000-08:00

"There's a moon up in the sky."
"Really? I don't see it, sweetie. Not that I don't believe you, but where is it?"
"Mom, I was just pretending my cheerio is a moon."
"Oh!"

Children have such wonderful imaginations. It's hard for us to remember sometimes how real their imaginary ideas are to them. In "the show-and-tell lion" the main character, Matthew, wants to share something exciting with his class during show-and-tell. He says, "I have a lion...a baby lion." and the story grows from there. His teacher tries to redirect him, but her alternate story is just a false, or maybe more false because it is not what he is seeing in his own mind. As the other children ask questions, Larry (the lion) grows bigger and bigger. Matthew's tale gets away from him when the children all ask to go on a field trip to see Larry before he has to go live at the zoo.

There are so many things I love about this story. It explores the imagination of a little boy and how real it becomes to him. The illustrations by Lynne Avril Cravath are endearing and add to the story in subtle ways (like the protrait of George Washington peering over Matthew's shoulder as he begins his fantastic story). The text by Barbara Abercrombie is straightforward and easy to read.

I think what I like best is that Matthew takes his dilemma home and shares it with his mother. Her response is that Matthew needs to tell the truth. She doesn't rescue him by rushing out to find a pet lion (unlikely, I know...but these days...) or letting him stay home from school for a few days while his friends move on to something else. She guides him to understand that his wonderful imagination has gotten away from him, and that he needs to be honest. Matthew's excellent solution is to make Larry "real" in a story. He writes down all of Larry's adventures and illustrates them himself. When he shares the "real" Larry with his class they are initially disappointed, but soon caught up in the adventure of the story. I also like how the author and illustrator show pages of Matthew's story and both the writing and drawing are typical of a child's writing and drawing - with cross outs, misspellings, and simple shapes.

Imagination is a wonderful gift, and this story shows how to encourage and direct it at the same time.

We found this lovely story at our local library, but you can also find it on Amazon, here.

Happy Thanksgiving!

New Series - Thoughts on Bullying

2011-11-16T01:04:00.001-08:00

I am about to abandon my normal blogging schedule...you know the one I can't seem to keep up with anyway. For some time now the subject of bullying has been on my mind. I don't have to tell you that it is a favorite topic in the spin cycle. A simple google search of news articles from yesterday brought up two different cases that are getting national attention - one that resulted in the suicide of a 10-year-old girl - on the first page of the search results. President Obama is talking about it, as are several state legislatures. California recently passed two new measures related to bullying. South Dakota can't get a bill out of committee. My interest in the topic, though piqued by all of the furor du jour, is much more personal than that.

My daughter - the one who inspired the creation of this blog - is a ripe target for bullying in two forms. Her developmental differences cause her to stand out in ways that bullies may use as an excuse to target her. In addition her challenged social skills coupled with her personal desire to please and get attention from peers also make her vulnerable to being used as a bully's sidekick or groupie. "I won't be your friend unless you [insert bullying behavior] to [insert target's name]." I think I'm probably already working on borrowed time here. I know bullying can start even earlier than 2nd grade. Since she doesn't have great expressive language skills we may have already missed some minor issues, simply because she doesn't have the ability to tell us what she has experienced each day. There are many mysteries that occur between drop off and pick up at school. All efforts to observe and keep tabs on what she is experiencing point to things being okay. How long can this last?

It goes back even farther than her almost eight years, however. No, this is deeply personal. Looking back on my childhood I don't think anyone would say I was "bullied" in the strictest definition of the word. There weren't any thugs waiting to jump me on my way home after school. No one took away my lunch money or threw my homework in the mud puddle. Still, starting at grade 5, my social experience was one of isolation and constant teasing. Through circumstances pretty much beyond my control I was ostracized, called names, and made the butt of many jokes. The adults around me were either unaware of my situation or took the view that this was all a normal part of childhood. I tried talking to my parents about it but was so embarrassed by the situation and the little involuntary part I played in it that I couldn't fully make my case as to why I needed their help. [I have to say I wish I could go back and change how those conversations went from my end, but when you're a child it's hard to overcome the emotional pieces...but you know that...] At any rate, I tolerated this miserable situation through 5th and 6th grades. Removal to middle school helped somewhat though it also physically separated me from the one friend who had stuck by me in 5th -6th grades. I made a couple of new friends, but mostly stuck to myself in middle school. High school and the relative anonymity of a school full of 1600 bodies was my best cure. I still viewed myself as an outsider and although my self-image improved a degree, I can truly say that it wasn't until a decade ago that I fully processed and excised the effects of those two miserable years from my psyche. Even today on a dark sleepless night fraught with other worries the enemy of my soul will remind me of the pain of those days. Hard to believe that 30 years later the words of a few probably insecure children can still bring me to tears. I am grateful for my faith which has lessened the pain and brought good fruit from it as well. I believe my own experiences have given me a passion to advocate for individuals with differences. I think I am also more sensitive to when people are hurting, and I have a deep desire to help in whatever way I can. So all's well that ends well, right?

If I can help one child avoid the misery that I felt for those two years the series I'm embarking on here will be worth every effort.

I also have to say that as I'm posting this it breaks a long silence. I have acquaintances on facebook who knew me at this time (heck there's a picture of me from 5th grade there - ugh!). My mom reads every blog post (Hi, Mom - I love you!) and it may be somewhat shocking to her to read these words. I want to be clear that I hold grudges against no one. Hindsight brings great clarity. Everyone was doing what they could to maintain their position in the social construct. What scares me is that today's bullying cases are leading to more than just tears. Children are dying. We've got to stop this for every child that we can. That's the goal.

Over the next period of time I'm moving away from my standard posting format. I'll be inviting some guests to comment on this and related topics. I'll be sharing resources I've found so far. I'll be sharing steps that I'm taking with my own daughter, and asking for ideas from you. I'm not sure how long this series will last. I hope to post at least once each week. If you have questions or ideas that you want me to research, please leave those in the comments or send me a note and I'll address those as well. This is so important. Thanks for your attention.

Trisomy 8 - Warkany Syndrome

2011-11-05T22:08:00.000-07:00

Trisomy 8 is a genetic disorder where three copies of chromosome 8 exist in every cell of an individual. You can review my earlier general trisomy post to refresh your memory on how that can occur. Recall that the chromosomes are numbered from largest (chromosome 1) to smallest. The larger a chromosome is, the more genetic information - instructions for cell development and function - it contains. Chromosome 8 is not the largest, but still contains a significant amount of DNA. Generally with three copies of chromosome 8 in each cell, too much damage is present for viability beyond early fetal development. Statistically Trisomy 8 is responsible for about 0.7% of miscarriages.

Some individuals have a different form of Trisomy 8 called mosaic syndrome, or T8mS. In T8mS only some of the person's cells have three copies of chromosome 8. The person may have cells in one type of tissue (e.g. blood or muscle) that have two copies of chromosome 8 and cells in another tissue (e.g. skin or eye) that have three copies. T8mS results from non-disjunction occurring during the process of mitosis (cell-division) rather than during meiosis (fertilization). Depending on when the mitosis goes awry there may be only a few effects, or several. However, the percentage of cells affected does not apparently correlate with the severity or which symptoms will appear.

Several distinct physical features are potential indicators of T8mS, including: low-set or abnormal ear shape, bulbed nose, strabismus (eye turns in), structural heart problems, palate abnormalities, and deep hand and feet creases. T8mS can also cause cognitive impairment and delays that may be mild or moderate. Treatment depends greatly on the symptoms of each individual. Heart problems can usually be corrected with surgery as can cleft palate. Strabismus can be treated with an eye-patch therapy or surgery.

More information on Trisomy 8 can be found here. During my research for this post, I also ran across the website for a support group called Unique. They distribute detailed information and provide support for individuals with T8mS and other genetic disorders.

Sunday Digest 37

2011-10-30T22:29:00.000-07:00

So much to share with you this time around that it may not all fit into one digest. There has been a lot of amazing stuff on my favorite blogs to visit lately...

1) My fellow 5 Minutes for Special Needs contributor, Suzanne, shared her inward (at least) response to a person who left an anonymous note on her car window. I hope the person read it, somehow. Just another reminder that not every disability is visible, even the physical ones. Let us be kind to one another, please.

2) My "down under" blogging friend Autism &Oughtisms shared a touching post about her autistic son and his imaginary friend. In addition to exploring various theories of imaginary friends, she explains how she views this as a positive step in her son's development. I distinctly remember my own joy when my daughter at more than four years old pretended to use an invisible object in her play for the first time. I was ecstatic and nearly burst into tears.

3) Tammy over at Praying for Parker expressed one of my darkest fears. Statistics estimate that 90% of unborn babies diagnosed with Down Syndrome are aborted. Tammy points out that some view this as a way of preventing Down Syndrome. What happens when we can test for autism prenatally? I have no doubt there are people working toward this. I can't quote statistics, but my general sense is that the average joe (or jane) has a more positive view of Down Syndrome than they do of autism. Interestingly, both disorders can have a whole range of effects on the developing child, so termination ends a life that isn't fully understood. I think I am particularly sensitive to this topic right now because an acquaintance of mine is expecting the birth of her third child in the next few weeks. According to some prenatal screening her unborn son has a higher than normal risk of Down Syndrome. She already has one child with special needs...and has gathered a whole pack of people around her to pray, not necessarily that the test will be wrong, but that their family will be able to celebrate the birth of their son no matter what the future holds.

4) I continue to enjoy the Special Needs Siblings Saturday posts at The Squashed Bologna. Mid-October, Varda's guest blogger was Michaela Seafoorce. I ready her SNSS post, but also followed Varda's advice and read two of her posts on her own blog here and here. I have been thinking a lot lately about peer advocates and how to find them, how to teach them, what to say. Michaela is just one example I've looked at. More on this in the weeks to come as I get my thoughts together...

5) I am kind of shaking my head these days in disbelief that I'm the mom of a second grader. It's all going by so fast. Laura Shumaker's post at City Brights about the transition to adulthood was a wake up call...time will continue to fly by and one day the child will be the adult. What then? The only thing I can do at this point is to continue to try to build in the skills and support that she will need when we get there a dozen years or so from now.

I hope you will enjoy all the links as much as I did, and if you visit do let them know you found them through The Simple Life.

Fallen Stars

2011-10-20T21:13:00.000-07:00

I scrunched along the sidewalk with my littles this morning, trying to enjoy the forced march from our light rail system to our home after dropping the minivan off for repairs. The kids were thrilled to see autumn leaves littering the sidewalk. I don't mind autumn too much, but I dread what comes after. Winter for us means rain, and lots of it...cabin fever with three children is not high on my list of enjoyable activities...so every pile of autumn leaves carries with it a sense of impending doom.

photo by Anja Jonsson via Flickr

As we shuffled along crunching leaves underfoot one leaf grabbed my attention. A bright red maple leaf somewhat separated from its mates lay in stark contrast with the dark gray cement of the sidewalk. It looked for all the world like a bright star fallen to earth. I started to look around me more carefully, the wonder of a child renewed in my heart. No wonder my dear hearts like to scoop these up by the handful and carry them home where they sit in one place or another, first beautiful then slowly decaying into brown bits of dust that I scoop up and toss in the mulch bucket. Reds, yellows, and oranges each carrying a bit of heaven to our feet. We can carry the stars in our hand, just like a child, if we will open our eyes.

I am linking up with Jenny Matlock's Alphabe-Thursday fest, except it's Autumn break, so no letter this time around, just the prompt: Autumn Colors. What's Autumn like in your neck of the woods? Head over to Jenny's to see the vast palette of colors He has given us to enjoy this season.

Book Review - Whole Body Listening Larry at School

2011-10-12T22:02:00.001-07:00

Our cheerful socially skilled friend, Larry, is back on the scene. This time he's tutoring new students Leah and Luka (fraternal twins, no less) on the importance of Whole Body Listening. Similar to the earlier book (reviewed here) where Larry helps his sister, Lucy, learn to listen with every body part, Larry walks Leah and Luka through the whole process, too. In this case the listening lessons occur in classroom and playground settings. For example, following a buzzing fly with your eyes instead of looking at the guest speaker at an assembly means you'll miss the best part of the show. Singing a song during story time distracts everyone from hearing the climax of the book. Responding to a friend's sad story with your own happy tale makes them think you don't care, and caring is essential to listening with your heart.

The second book is also told in a straightforward rhyme which is helpful to struggling readers. The pictures, narration, and speech and thought bubbles all help convey the message of the book. Two differences I noticed, and liked, arise from the use of two characters, one male and one female, who need to learn Whole Body Listening skills. It seems that sometimes we think of only boys (or less often only girls) as having a problem with listening. Boys tend to be more active and girls can be silly with giggling and such. The truth is that both boys and girls can struggle with listening skills. I liked seeing that played out. I also liked that at times one of the twins might be depicted as having successful expected behavior while the other was struggling. This emphasizes not only that they are separate individuals (something that again is sometimes hard for us to keep in mind in our concept of twins), but also that it is possible to succeed in one area of listening, while struggling in another area. Perhaps you've mastered listening with your ears, but your eyes tend to rove the room instead of focusing on the teacher.

Last but not least I have to assure you that even though the message is the same, the story remains fresh for my child at least. A friend gave us a copy of this book some time ago, but I had hidden it away in hopes of reviewing it before releasing it to the wilds of our book pile. When the child saw it this morning she sat down right away to read it. She compared the body parts diagram in the two books, and insisted on reading it again tonight with our bedtime repertoire. So if you haven't already had the chance to check out these books, I would encourage you to do so. I think they have both greatly encouraged good listening for my little social skills scholar.

P.S. Sorry I can't seem to post an image of the book at the moment. Blogger will upload, but not embed the image. I'll try again later if I can...

Clean Up

2011-10-03T21:22:00.000-07:00

We’ve been working on cleaning up the child’s room for about a week now. Her room doubles as our guest room and my parents are coming to visit, so it really needed to be done. Grandma said not to worry about it, but really…it needed to be done. There is a pattern developing where we work really hard to clean it up, she maintains it for a while, then “something” (usually sibling related) happens and it starts to get a little messy. If I don’t jump on it then it slowly builds up again until…we have to work really hard to clean it up, and so it goes.

Currently we are in the work really hard to clean it up phase. Having done this so many times I have some good ideas on how to make this work…

• So as not to overwhelm either of us we break the work into several phases. First we pick everything up off the floor, the next day we clean off the desk, the next we clean under the bed, and so on. There is a feeling of accomplishment with each phase, and as the room starts to shape up the satisfaction grows.

• I help her get started and depending on how hard the work is going to be I either stay and support her efforts or go do something else for a while. Cleaning off the floor is pretty straightforward, and she can make her bed herself. Sorting through the piles of beads, rocks, feathers, seeds, sequins, etc. that she has collected and scattered among books, papers, markers, school projects and puzzles pieces on top of her “desk” well…that requires mommy time.

• We bring a garbage can, a recycle bin and a “this goes somewhere else in the house” box into her room. I encourage as much as possible to go into one of these boxes. For what is left (which is a lot)…

• We sort things into piles, and find good containers for all of her little collections. This is the hardest part for me. Most of the things she likes to collect she doesn’t really DO anything with, she just collects them. So it is hard for me to just let them all sit around. Surely she wouldn’t miss this red sequin that was randomly sitting on the corner of her dresser. I’ve learned the hard way, though, that she has a pretty impressive inventory in her head of all of this stuff. She wants to know where it is, and if it gets lost we’re headed to meltdown territory. This is happening less often, I think because I have learned to “respect” her stuff. I try very hard not to toss any of it unless she says she doesn’t want it.
Next up is maintaining, and I’m trying to come up with strategies to extend this phase. I want this to happen not just so I have one less disaster area in the house, but also because these are skills that she will need down the road. I put it out to my facebook friends to ask for ideas of what to try. We came up with four main tools:

• Labels – During the clean up phase this time around I’ve been labeling everything. Each drawer and each shelf has a label. This is for the child’s benefit, but also Daddy’s. There are times when he supervises clean up and if he doesn’t know where things go they end up in some “interesting” places. Hopefully the labels will help.

• Break it down – Some tasks like making the bed and picking up dirty clothes need to happen every day, others like tidying up the desk could be a weekly chore to keep it from becoming too overwhelming. I think a couple of daily tasks and one weekly job each day will be a reasonable starting point.

• Visual aid – Now that it’s clean, I’m going to take some photos of each potential trouble spot in her room and make some kind of chart that shows her what it looks like when it’s clean. This is taking a lesson from social stories in which we emphasize the desired outcome.

• Incentives – Sad but true the child lives for prizes and rewards. I like to use them until the tasks have become a habit and then phase them out. For now she’s working to collect loose change for a little Sunday School fundraiser. I’ve been giving her small coins for chores around the house toward that project. Perhaps for a while if she can complete her daily room clean up there will be a monetary reward.

I’ll also be trying to prevent those “trigger” events that make it all too overwhelming and/or responding to them earlier to keep the clean it up phase shorter. I would love to hear your thoughts on this age old challenge. How do you keep your child’s room clean? Do you involve them in the process? How do you maintain it? What helps keep it all in perspective? Just click on comments below to share your ideas.

Dignity and Humor

2011-09-30T14:31:00.000-07:00

A wife of noble character who can find? She is worth far more than rubies. Her husband has full confidence in her and lacks nothing of value. She brings him good, not harm, all the days of her life. She selects wool and flax and works with eager hands. She is like the merchant ships, bringing her food from afar. She gets up while it is still night; she provides food for her family and portions for her female servants. She considers a field and buys it; out of her earnings she plants a vineyard. She sets about her work vigorously; her arms are strong for her tasks. She sees that her trading is profitable, and her lamp does not go out at night. In her hand she holds the distaff and grasps the spindle with her fingers. She opens her arms to the poor and extends her hands to the needy. When it snows, she has no fear for her household; for all of them are clothed in scarlet...She is clothed with strength and dignity; she can laugh at the days to come. (Proverbs 31:10-21; 25 NIV)

This study of the Proverbs 31 woman has been so rich for me. I hope you have enjoyed it, too. If you're just joining in you can review the earlier posts by clicking on the links in the passage above. The Proverbs 31 woman has always been a bit intimidating to me because of all she does, but recently God has been reminding me that He is more interested in who I am than in what I do. I decided to look into the character of this woman and see if I can learn more about "how to be" from her. It's been really encouraging so far.

There are two interesting juxtapositions in today's verse that I never noticed before. First, earlier in the passage (not quoted above) we are told that this woman is clothed in fine linen and purple (verse 22.) At this time period wearing linen signified that you were part of the noble class, and wearing purple meant you were royalty, or rich enough to be. Still the emphasis seems to be more on her spiritual attire of strength and dignity. There is symbolism in this for us. Personally my wardrobe could use a lot of gussying up. That show "What Not to Wear" would have itself quite a field day with my closet. I have clothing from high school (that still fits!) and mostly wear jeans, big t-shirts, and well-worn flannel shirts. I go for comfort and practicality and most "stylish" things just don't seem to fit either criteria...not to mention they're way out of our budget. However, even if my physical clothing isn't fit for the fashion runway, my spiritual clothing can be pleasing to the eye: noble and precious, strong and dignified. Dignity (honour in KJV) is the Hebrew word hadar (haw-dawr'; ^ over both a's) and means ornament, splendor, beauty, excellence, or majesty. It is derived from the primary root word hadar (haw-dar'; ^ only over the first a) which means to swell up, to favor, honor, or put forth. Needless to say it is a quality that makes this woman stand out in a crowd in a way that draws admiration from others. We can wear this dignity with anything - it is the perfect accessory for every outfit.

The second point is the seemingly contradictory characteristics of dignity and humor. She is clothed with dignity, yet she laughs at the days ahead. I have often wondered at this turn of phrase. When I look at the days to come I rarely laugh, unless nervous laughter counts. I'm usually the one biting my nails worrying about every possible outcome and not at all confident that I'll have what it takes to persevere. There was a time when I would actually worry if I didn't have something to worry about, so I've come a long way, but it's all too easy to let my mind run to the worst possible scenarios. This woman looks at the days ahead with confidence, joy, and a sense of humor. One might think that dignity and humor don't fit in the same personality, but here we see that the strength and dignity to face the future is the very root of good humor. With all of the uncertainty and fear-mongering that abounds in our society the secret of dignified humor will be key to stepping forward with confidence in the days ahead.

Let's join the Proverbs 31 woman and look ahead with joy in our hearts, assured that our future is secure.

Sunday Digest 36

2011-09-18T15:28:00.000-07:00

It's time for another Sunday Digest - actually it's overdue! Somewhere between technical difficulties, toilet learning (one down, one to go) and other parenting duties you will find the time I was supposed to be getting this done...sigh. Meanwhile, I have found some interesting posts to refer you to, and here they are:

1) 5 Minutes for Special Needs, where I'm thrilled to post weekly, has a new feature, called "Ask the Parents"...you can go here to read about it and see how it works. The idea is to gather questions from our audience that we can respond to directly as well as reply to in posts. If you have a burning question for other special needs parents, ask away!

2) As always, my blogging friend over at Autism & Oughtisms is stirring the pot with a detailed look into intellect and intelligence, and all the labels that we throw about so casually...

3) I did a guest post over at Books 4 Christian Kids a little over a week ago. The book has little to do with Special Needs, per se, except perhaps that our kids may be more prone to anxiety issues. Ready for Anything, the book I reviewed, could be a gentle entry point for talking about worry with your child.

4) I couldn't have said this better myself. Tammy over at Praying for Parker says it like she means it. Education choices abound in the Special Needs world, and sometimes it seems like everyone has an agenda. No one could doubt Tammy's Special Needs Advocate pedigree, but she chooses to homeschool Parker because it is best for him. Not only can she meet his specific (tactile) learning style, she can protect him from the myriad germs that would make him sick if not threaten his life. I can say, as a parent of a child who is mainstreamed in a general education classroom that I totally respect her choice...I couldn't pull it off with my own child, but I applaud her ability and would never question her decision on some argument that her choice negates or makes mine any harder to achieve. Parents should choose the best education they can find for their own child, and that's the ideal we should be working together to achieve.

5) And speaking of such, doesn't this sound like a lovely neighborhood? Thanks for sharing it with all of us, Kristina White via Hopeful Parents.

Until next time, click away and if you leave a comment make sure you tell them you found them over at The Simple Life.

Ugh! and Understanding...

2011-09-08T21:51:00.000-07:00

I don't Usually vent here, but Jenny Matlock's Aplabe-Thursday meme is Up to the letter U, and frankly "Ugh!" is the only thing that comes to mind. I am in the last gasps of preschool Summer break. Just. a. few.days. left. Sadly I needed a long break from my twins about three weeks ago. They are at a very trying stage. They just want to be silly all the time. They don't want to listen, even when good things might be coming their way if they can listen. My patience has long since run out...and I really thought I had built Up a good reserve, too. That would be enough, but...

The child has resisted homework two out of three nights this week. Given that it's the first week of homework that doesn't bode well for the weeks ahead. I'll need to get a handle on this soon.
Little boy has been learning toilet skills, but isn't 100% yet, which is expected, but still no fun.
My dear mother-in-law tried to cook something in her microwave and smoked Up her house, bringing the fire department, again.
My foot started hurting quite suddenly and Unexpectedly this morning...of course it is one of the days when my husband is gone all day and I had lots of walking to do. I am on my feet a good bit of the day, so it's hard to rest it.
There are several issues at school district and city level that I need to voice my concerns on soon. Pretty big issues that I've been following and involved in for several months now.

...And that's just today's load of Ugh!

Still even as I type this I'm hearing on the radio of entire communities without power. Large land masses that are on fire. There are children going to bed hungry somewhere, and a mother trying to figure out how to meet their needs better tomorrow. So for all of my Ugh at the moment, there is also a good dose of Um...gratitude that my little challenges are just that - little. All this stuff I'm venting about will be forgotten (mostly) a year from now. What will not be forgotten is the attitude that I face it all with. I must remember that my children, most of all, want a mom who is calm, loving, and firm, but Understanding.

The well known serenity prayer comes to mind...do you know the whole thing? I'm thinkin' I need to memorize it!

God grant me the serenity

to accept the things I cannot change;

courage to change the things I can;

and wisdom to know the difference.

Living one day at a time;

Enjoying one moment at a time;

Accepting hardships as the pathway to peace;

Taking, as He did, this sinful world

as it is, not as I would have it;

Trusting that He will make all things right

if I surrender to His Will;

That I may be reasonably happy in this life

and supremely happy with Him

Forever in the next.

Amen.

Movie Review - A Mother's Courage: Talking Back to Autism

2011-08-31T16:05:00.001-07:00

My husband and I recently watched the documentary A Mother's Courage: Talking Back to Autism. It is the touching story of a family who live in Iceland seeking more information and help for their youngest son, Keli, who is severely affected by autism. Keli's mother, Margret Dagmar Ericsdottir, a movie producer, sets out to film her journey so that she can share it with us. She visits many experts in Europe and the United States. Among these, she interviews Temple Grandin, who was diagnosed with autism and is now a Professor of Animal Science in CO and an autism author and advocate. Among other researchers she meets Dr. David G. Amaral who is the Director of Research at the Davis MIND institute in CA. Eventually, she finds Soma Mukhopadhyay who worked with her own autistic son in India and developed the Rapid Prompting Method (RPM) - a unique style of education and communication through tearing paper, writing, and pointing. Soma founded HALO in Austin, TX, where she continues to refine her methods and teach them to others. Along the way Mrs. Ericsdottir meets other parents whose non-verbal children were helped by RPM. They are able to use letter boards and electronic augmentive communication devices to express their thoughts and demonstrate their ability to learn in spite of all of their challenges. The movie itself is quite moving. One cannot help but love Keli and root for him as he begins to use RPM to communicate with Soma and his mother. Director Fridrik Thor Fridriksson is masterful in his use of dramatic cinematography to weave the tale of the mother's journey with the son's progress. Images from Iceland's rugged and beautiful scenery give some physical sense to the treacherous path this family must walk. I like that the film just tells this family's story without getting caught up in any of the controversies that surround autism (and there are many); yet it also gives a level-headed description of the various challenges that individuals with autism face. In this way it is a great awareness tool, particularly for families and friends of an individual who is non-verbal.

That is not to say the film is not controversial. I know there is some debate regarding the use of facilitated communication (FC) which looks at least on the surface like RPM. This article nicely summarizes the pitfalls of FC. The risk for fraud is great. If the facilitator knowingly or unknowingly guides the communication of the non-verbal individual then no true communication has occurred. If false information is passed it could be damaging to the affected individual or their family or caregivers. RPM is apparently distinct from FC in that no physical support is given to the non-verbal individual as they point or type. HALO has a frequently asked questions page where they explain the differences as they see them between RPM and FC. I haven't had much time to research and delve into this controversy, so I recommend doing your own research. My gut feeling tells me there is certainly space for fraud to occur and that great care should be used when investigating and using such techniques with anyone.

Finally, stories like this always make me wonder...what has happened since it started? The movie was made in 2009. What has happened to Keli since the film was made? I did a little Google searching, and didn't find much direct information, but evidently Keli continues to use RPM to communicate with his family, and to write poetry. Kate Winslet, who narrates much of the documentary, is working together with his family and a group of Hollywood celebrities to publish some of his poems as a way to raise funds and awareness for families affected by non-verbal forms of autism. You can read more about that project, The Golden Hat, here. It is due for release in November 2011 - I am not much of a celebrity-phile, but I'll be watching for this.

This individual story is heart-warming, and the ideas and questions it surfaces will draw in a broad audience. As always your thoughts and comments are welcome.

Confident

2011-08-26T07:10:00.000-07:00

A wife of noble character who can find? She is worth far more than rubies. Her husband has full confidence in her and lacks nothing of value. She brings him good, not harm, all the days of her life. She selects wool and flax and works with eager hands. She is like the merchant ships, bringing her food from afar. She gets up while it is still night; she provides food for her family and portions for her female servants. She considers a field and buys it; out of her earnings she plants a vineyard. She sets about her work vigorously; her arms are strong for her tasks. She sees that her trading is profitable, and her lamp does not go out at night. In her hand she holds the distaff and grasps the spindle with her fingers. She opens her arms to the poor and extends her hands to the needy. When it snows, she has no fear for her household; for all of them are clothed in scarlet. (Proverbs 31:10-21, NIV)

I wanted to continue looking at the Proverbs 31 woman this week, continuing to focus on her character rather than her activity. So far we have seen that she is noble, precious, eager, vigorous, strong, profitable, prepared, and generous. It is still quite a list, but each of these qualities comes from a heart that seeks its value from God rather than selfish effort or material goods. Today we see that this woman has no fear for her household. In particular it refers to a snow storm, perhaps even a blizzard. It may be a bit hard to picture snow in Israel. We generally picture Israel as a hot, desert land, which it is - similar to the Los Angeles basin. However in the northern hilly regions (Mt. Hermon in the Golan Heights) it snows yearly, enough to support skiing. Safed, Jerusalem, and the hill country of Judea can get snow every few years. At any rate it is not unthinkable that this woman faces the occasional snow storm with her family. During such storms she clothes them in scarlet, probably wool that she has made with her own hands. The scarlet, deep red color would keep them visible during white out conditions. The wool would keep them warm. Such clothing is associated with wealth and well-being (though not always in a positive sense, see II Samuel 1:24 and Revelation 18:16.) There are a couple of points that make this really powerful imagery for me:

First, it shows again the preparedness of this woman. She knows the dangers that her household may face. Not just family, by the way, but also servants needed to be provided for in times of danger. She knows they will face the occasional blizzard, so she prepares appropriate clothing for this danger. With all the big storms and earthquakes lately, and the instant, global publicity they can receive, emergency preparedness is big in the news lately. Around here we don't have to worry about blizzards. We have earthquakes and brush fires. There are certain precautions that we need to take to be prepared for these hazards. More importantly there are spiritual hazards that we need to be aware of and preparing our household to face: materialism and moral relativism spring to mind. We need to "clothe our families in scarlet" - giving them a foundation of the true Gospel to keep them safe in these spiritual blizzards.
Second, I can't help but be reminded of the well known verse Isaiah 1:18 - "Come now, let us reason together," says the LORD. "Though your sins are like scarlet, they shall be white as snow; though they are red as crimson, they shall be like wool..." (NIV) It's the same interplay of colors - scarlet and snow - but in many ways an opposite image. Our sin, in this metaphor, is what makes us stand out starkly on the white background of God's holiness, but He has the power to make us white as snow.

No matter how you look at it, it is God that keeps us safe in the storms of life and God that can wash away our sin and make us pure. Once again our hearts must turn to Him in order to be confident for ourselves and our family.

Camping Special Needs Style

2011-08-22T07:00:00.000-07:00

We just returned from our third annual camping trip. It was the best trip yet, and I thought I would share some of the things that have made these trips work well for our family. Camping is a wonderful experience, but not without quite a bit of planning, preparation, and a little bit of luck. When considering camping with a child with special needs there are some extra considerations to take into account...

Explore your options - Many state parks have campgrounds with ADA accessible sites and restrooms. Do some Internet searching to find out what is available, and what will best suit your family's needs. Aside from physical access, consider what activities are most appropriate - swimming, hiking, fishing, and educational programs may all be available. Where we live it is best to reserve your camp site far in advance, particularly if you need an ADA site. We made our reservations in March for camping in August.

Safety in numbers - We have not tried camping with just our family yet. We have made all of our camping trips with a group of families that all have children with special needs of various types. This year we had seven families with a total of 24 people, and children ranging from 2.5 years to late teens. The advantages to this arrangement include dividing up the work, and sharing gear (see below). It also helps to have extra adult eyes around to watch your children while you are setting up your tent, cooking, or cleaning up a meal. For us it helps that all of the other families are familiar with various special needs, but you could just as easily go with some good "normative" friends, as long as they get it when you have to accommodate and support your child in various ways.

Safety in mind - Find out the particular safety concerns for your selected site. We have camped in bear territory twice now, though we haven't seen any bears (thank goodness!) we have to be careful about storing food, gathering trash, and generally keeping a neat and tidy campsite. There are other concerns like snakes, rivers, lakes, poison oak/ivy, etc. that you should keep in mind, plus sharp and hot tools that may be easier to access than usual. Carefully arranging your campsite and straightforward, frequent, clear warnings to your children help contain these risks. Nothing beats vigilance and preparation.

Find out what you will need - I found this packing list website this year, which helped us have pretty much everything on hand that we needed. Their list has extra space in each category for you to fill in any extras that you might need for your family. Here again be aware of your campsite's environment and amenities. Some have modern restrooms, others not so much. Our camp has frequent afternoon thunderstorms (not this year!) so having rain gear and dry firewood are a must.

Gather your gear - So camping gear can get pretty expensive, but by working together with your camp mates (if you choose this route) you can often share common gear like cook stoves, pots and pans, canopies, eating utensils, chairs and tables. We have added a piece or two of new gear to our stash each trip - this year we bought another air mattress and sleeping bags for the twins. You can borrow or rent gear, too. So far we borrow our tent every year.

Expect it to be messy - Driving into our campground this year we saw some children hiking by the road who were filthy from head to toe. We laughed and said, "Give our kids five minutes and they'll look just like that." It was true. It is easy to get dirty when you're camping, and dirt doesn't hurt (except maybe in the case of children with compromised immune systems, in which case, well you know best how to handle this...) There will also be times that you have to be flexible and inventive if you forget to pack something (like your daughter's swimsuit...ahem) or when your kid wants a nap when everyone else is setting out for a hike. Although this can be challenging, I also view it as a great way to stretch our daughter's coping skills. I really did forget her swimsuit this year, and she very calmly accepted the alternative of wearing some shorts and a tank top into the pool...a year ago that would have been unacceptable to her.

Have you ever taken a camping trip with your family? What tricks did you learn to make it work well for you? Thanks for sharing!

Trisomy

2011-08-13T00:54:00.000-07:00

Trisomy is an umbrella term for several genetic conditions in which three copies of one or more chromosomes is present in the cells of an individual rather than two copies of each chromosome. Usually human cells have 23 pairs of chromosomes for a total of 46. During the process of producing eggs and sperm (Meiosis - scroll down to "Making New Cells and Cell Types" in this link for detailed description and diagrams) the parent's chromosomes (2n) are divided in half among "daughter" cells. Usually each daughter cell gets half (n) of each chromosome pair. Trisomy occurs when one daughter cell gets an extra copy of a chromosome (n+1) due to nondisjunction (the chromosomes do not separate). The other daughter cell loses a copy (n-1), which results in monosomy. Upon mating an n+1 gamete combining with an n cell from the other parent produces an offspring with 2n+1 chromosomes (trisomy). An n-1 gamete combining with an n cell from the other parent produces an offspring 2n-1 chromosomes (monosomy) -- these zygotes are generally not viable.

In the process of researching this post I drew myself a diagram to consolidate some of the information I was gathering, to illustrate the formation of a 2n+1 zygote. I'm sharing it here with a couple of disclaimers. Please note that this is only one sequence that could lead to trisomy. Also, I am not a molecular biologist, so my diagram may be overly simplified, but hopefully is clear enough to explain the basic steps. Click on the picture to see a larger version...

Trisomy may result in conditions that are life-threatening to the offspring. In some cases the child will have severe physical or cognitive challenges. In other cases the issues can be so mild as to go undiagnosed. The latter is particularly true of some sex chromosome trisomies.The degree of severity appears to be related to the amount of genetic information that is affected. Because the chromosomes are numbered according to size, with 1 being the largest chromosome, the lower numbered chromosomes are responsible for more DNA or genetic information than the higher numbered chromosomes. Trisomy 21 (Down Syndrome) affects one of the smaller chromosomes, fewer genes are affected, and so fewer challenges affect the developing child relative to trisomy of lower numbered chromosomes.

There are several kinds of trisomy that affect the autosomes (the non-sex determining chromosomes):
Trisomy 8 - Warkany Syndrome
Trisomy 9
Trisomy 13 - Patau Syndrome
Trisomy 16
Trisomy 18 - Edwards Syndrome
Trisomy 21 - Down Syndrome
Trisomy 22 - Cat eye Syndrome

There are also several kinds of trisomy affecting the sex chromosomes:
XXX - Triple X Syndrome
XXY - Klinefelter's Syndrome
XYY - XYY Syndrome

I hope to explore each trisomy in more detail in future posts. For now I hope understanding more about how these conditions arise has been helpful. I also wanted to share a link for SOFT (Support Organization For Trisomy 18, 13, and Related Disorders), an organization that supports families affected particularly by Trisomy 18 and 13. Besides Down Syndrome, these are the most common forms of trisomy, and finding support is a critical step.

Sunday Digest 35

2011-08-07T17:18:00.000-07:00

Just to let you all know, I've shifted to a new blog schedule...I've been finding it increasingly difficult to get two posts plus a post at 5 Minutes done each week. Part of this is because my usual writing time (nap time!) is starting to vanish, and part of this is because I'm trying to take a more active role in my husband's business. I am hoping to do one post each week here, and keep my posts at 5 Minutes flowing, too, plus any other guest posts that come my way. I may have a couple of guests pop up here, soon, too. We shall see. This may also free up some time to work on a couple of other projects, which, if they come about I will tell you about in due time.

To the business of the day...it is digest time! Here are some interesting links I've come across as I've roved the Internet lately:

1) These first two links I heard about via my fellow blogger, Autism and Oughtisms. She shared them on facebook. I am increasingly interested in learning about the brain, and what happens when it isn't working normatively. This article focuses on autism, perhaps explaining a piece of language confusion in autism where the affected individual reverses pronouns - calling themselves "you" and others "I." It seems these researchers have found that the white matter connections between two areas of the brain are faulty - picture a short circuit between the light switch and the bulb. I find this particularly fascinating as my mother-in-law apparently has similar white matter deterioration, but in different "circuits." Brains are miraculous!

2) This second link is more practical and discusses first responders' need to learn how to best help an individual with autism during an emergency. Emergency preparedness is a big topic these days, and one that requires special attention if you are a caregiver to an individual with special needs. Some local first responders have registries where you can notify them in advance if you think special equipment or specific information will help them give better aid to your loved one with special needs. Check it out and be prepared.

3) Another friend from down under SquiggleMum posted this "how to" on building an outdoor play kitchen with her kids. It is adorable, and NOT expensive, and I imagine they are having all sorts of fun, creative, imaginative, social play out there. What fun!

4) This touching piece by Tim Gort over at Hopeful Parents explores what happens when a man becomes a dad.

5) Last but not least, my fellow 5 Minutes contributor, Maggie, shared a success story for her twin boys. Thanks to the dedication of a lifeguard and some appropriate individualized instruction they are learning to swim! Can't beat that!

Guest Post

2011-07-29T15:10:00.000-07:00

I am guest posting today at The Works of God Displayed for the Fridays from the Families series. Thanks for the opportunity, Shannon. Head over and check it out!

Book Review - D.W.'s Guide to Perfect Manners

2011-07-27T01:46:00.000-07:00

My kids all love the Arthur characters - books and videos. Does anyone know, by the way, what kind of animal Arthur et al. are supposed to be? Just curious...if you know please leave it in a comment, because I haven't the foggiest. We had lots of rainy days this past winter and at our school the policy on rainy days is that the kids go to the library to watch a video during lunch recess. This is where the child learned about Arthur, and she has been hooked ever since. The twins also like him, so that's a bonus. It's always nice when we can find something to agree on.D.W, in case you don't know, is Arthur's little sister.

We found D.W.'s Guide to Perfect Manners at the library, and although it was my little girl who picked it off the shelf, the child has also enjoyed reading it a few times. It is at just the right reading level for her (mid-1st grade), so that's a plus.There's something about finding a book with a character your child loves that also has a message that you as a parent love. It's a magical combination, and I think it is found in this little gem. The illustrations are typical Marc Brown - colorful and just enough detail to keep things interesting without being too overwhelming. The book follows D.W. through her day as she tries to have "perfect" manners. Everything from self care (washing, tooth brushing, wearing clean clothes, and combing your hair) to table manners and social skills is covered in a straightforward manner. Most of the manners are presented as positives (Do this...) rather than negatives (Don't do that...) but some negatives slip in. I know from personal experience how hard it is to put everything as a positive, but I think it is easier for young children and those with learning differences to hear what they should do. This is the one thing I am disappointed by in this book. The other thing I would probably clarify for a child is that the book talks about being "perfect" by which it means having good manners - it does not mean that the child can't make mistakes. This could be addressed on the page where D.W. says "Perfect people say 'I'm sorry' if they mess up or if they hurt someone..." Clearly (to me) the perfection here is in knowing that if you make a mistake you apologize, not that you won't make a mistake at all. Still for children it might be confusing to talk about being a "perfect" person. In fact, we have taught the child that the only Perfect Person is Jesus. I am pleased that the Arthur products include constructive interactions with adult characters. I've noticed a trend lately where children's shows and books seem to put the child character out there on their own to handle whatever conflict comes their way. It's nice to see a more realistic interaction where parents are a valuable and encouraging resource for their children.

Overall this book is a sweet way to reinforce good manners for your child, especially if they are attracted to these characters anyway.

Generous

2011-07-22T22:50:00.000-07:00

A wife of noble character who can find? She is worth far more than rubies. Her husband has full confidence in her and lacks nothing of value. She brings him good, not harm, all the days of her life. She selects wool and flax and works with eager hands. She is like the merchant ships, bringing her food from afar. She gets up while it is still night; she provides food for her family and portions for her female servants. She considers a field and buys it; out of her earnings she plants a vineyard. She sets about her work vigorously; her arms are strong for her tasks. She sees that her trading is profitable, and her lamp does not go out at night. In her hand she holds the distaff and grasps the spindle with her fingers. She opens her arms to the poor and extends her hands to the needy. (Proverbs 31:10-20)

We're revisiting the Proverbs 31 woman, continuing to focus on her character and who she is. In this week's verse we learn first more detail about her work - that she spins thread, then we learn that she is generous to the poor and needy. By the juxtaposition of these verses I imagine that she is generous not only with her money, but also with her time and resources. Perhaps she gives away some of the thread or cloth that she makes. She does this knowing the principle already explained earlier in Proverbs:

"...blessed is he who is kind to the needy." (Proverbs 14:21b, NIV)
"A generous man will himself be blessed, for he shares his food with the poor." (Proverbs 21:9, NIV)

It appears that in God's economy being generous is a safety net both for the recipient and for the giver. There are several provisions in the Old Testament law to protect and provide for the poor, the widow, the orphan and the alien.

There is a whole lot of needy going on in the world around us. I pray that God will show me new ways to be generous to the needs He puts in my path.

Insomnia? Some Tricks that May Help

2011-07-18T21:42:00.001-07:00

So my sleep pattern is pretty much messed up and has been since last October or so. The unhealthy pattern I got into looked something like this:

I tuck the twins into bed and stay in their room to make sure they don't keep each other awake with their three-year-old stand up comedy and wrestling routine. Usually I would lay down (to rest my neck which is recovering from a long-term injury) and prop my laptop up to scroll through facebook, twitter, or blog streams or write a new post here. For a while I could do this and stay awake until the twins were asleep, then get up and do more work elsewhere in the house, head to bed at midnight and get up at seven to start the next day. The problem started between working too many nights after my midnight deadline coupled with jet lag after our trip to Bali last Fall. Soon I found myself falling asleep before the twins did. Then I was sleeping on the floor of their room until about 2:00 a.m, then crawling off to bed to sleep. Except...then I couldn't go back to sleep. I would lay in bed worrying about all the things I didn't get done, thinking about what I would have to do tomorrow (today), listening to my husband snore, etc. I'm doing what I can to change this pattern now, but I've learned a few tricks to help with the "can't get back to sleep" part of the problem that I thought I would share with you...in case you ever have a similar challenge.

The overall goal of these tricks is to get your mind occupied with something that is positive, but not too stimulating so that eventually you drift off to sleep. If one doesn't work another one might, depending on what frame of mind you're in.

Be the anesthesiologist - If you've ever had surgery under general anesthesia, they often do a little trick with you to take your mind off of what is happening. They will ask you to count backward from 10 as they administer the drug to put you into la la land. Most people don't make it past 7 before they are out. I do a similar thing except I start from 100, and I try to pace my counting with my breaths, taking long slow steady breaths as if I am already asleep. Often I'm asleep before I hit the seventies...if I get further than that I either keep counting down, but try to go slower or I change techniques. Let your mind drift a little as you are counting as this makes it harder to keep track of which number you're on and makes it easier to drop off.
Play the alphabet game - People use this on long car trips to make the time pass more quickly, but it works great for falling asleep, too. Think of a category of objects (vegetables, animals, songs, fruits, etc.) and try to think of one object for each letter of the alphabet. So if you're thinking of animals, it's: A - alligator, B - butterfly, C - cougar...To make it extra challenging you can go backwards: Z - zebra, Y - yak, X - x-ray fish...Often I try to come up with characteristics or names of God, which can turn insomnia into devotional time.
Use some visual imagery - There are a couple of different imagery techniques that I've found work really well. The first one is to imagine a large book open on a table (an unabridged dictionary, for example). Now imagine slowly closing the book so that the pages are all meeting in the middle. If you get too close to the cover, just imagine a few more pages, or close more slowly. This sounds simple, but is surprisingly effective. The second idea is to imagine a red background, and then picture a white object in front of it. I often use some Christian symbol (a cross or a dove, for example). I suggested this to a friend and she said that when she tried it she couldn't get the color red. I actually think that's part of what makes this work. It's not easy to imagine an all red background and then put something white in front of it. While your brain gets busy with that you can relax and go to sleep...unless you get stressed out about not being able to make red...in which case try something else.

So this is what works for me when I just can't drop off to sleep. Very rarely nothing will work, and in those times I assume there's something God's trying to tell me, so I get up and find something to do that gives me time to think and pray. It's sort of like fasting from sleep. Usually after I've spent that time working things out with God I can fall asleep easily.

Let me know if you have any similar tricks to head off insomnia...it's always good to have more tools in the kit. Just click on comments below.

Sunday Digest 34

2011-07-17T00:15:00.000-07:00

Here's the best I've seen while scouting around...still horribly behind on blog reading, but I was caught up on laundry...briefly...one day last week.

1) Sometimes you need to walk a mile in another person's shoes. Sometimes you just need to read a very passionate blog post. Even other special needs parents may not always "get it" when comparing worries. Check out this post by my fellow 5 Minutes for Special Needs contributor, Heather P.

2) I loved this post at Autism and Oughtisms which so clearly explains how even the verbal child on the autism spectrum is affected by language delays and communication challenges. I have tried to explain this in some of my own posts, but this mum (from New Zealand) says it so much better.

3) Having just celebrated the 4th of July, it seems fitting to spend a couple of minutes supporting our military families who are also special needs families. You can read this post at Hopeful Parents by Diary of a Mom to find out how you can help.

4) I'm still loving the Special Needs Sibling Saturday series over at The Squashed Bologna. Varda has located some of the best parent bloggers around to help us see the intense sibling relationship through several new lenses. Read the latest here and the whole series here.

5) And I'm cheating a little because I'm posting late and Tara over at kidzorg posted her Monday story early...Ever wished you could have one of those reality TV shows come and redo part of your home? There's a charity that does this for children with special needs...you can read about it here. [We don't need a makeover so much around here as someone with some insane organizational skills...in case any reality TV shows are scouting for story ideas...just sayin']

Magic

2011-07-14T15:58:00.001-07:00

Children see magic so easily, and we forget so easily.

The child made a magic wand one day - out of a plastic tube that used to be the center of a fax paper roll. She colored three different "buttons" on it with sharpie markers - red, blue, and green. Then she taped a small strip of paper to the other end like a lonely streamer on a handlebar. She said if she pushed the red button it would make red magic, etc, a concept she copied from an episode of "The Little Einsteins" where a group of fairies make the northern lights appear with their magical music. She wandered around all afternoon making her various colors of magic, I'm sure actually seeing them spray forth from the streamer and color her world.

So many things are magical to children - butterflies, hummingbirds, rainbows, thunder, crickets, stars, and the list goes on. As adults we think we are better off because we can understand things more, but somehow I think the children are ahead of us on this one. What good is it to know a butterfly is just a caterpillar post-metamorphosis and that it spreads pollen as it moves from one flower to another if you lose the sense of wonder at watching it fly at all?

Children sometimes are magical in their own way as well. They can turn my frowns into smiles with a well-timed giggle, hug, or fun idea. I need to let them push their happy button and wave the wand my direction a little more often it seems.

I want to remember the magic of childhood. I want to re-enter the spirit of belief, trust, and wonder. I want to make magic with them, and help them hold on to it as long as they can.

This post is inspired by the Marvelous Aphabe-Thursday Meme sponsored by Jenny Matlock. Click over to read the other Magnificent M posts here.

Phelan-McDermid Syndrome Primer

2011-07-09T15:41:00.000-07:00

I first heard about Phelan-McDermid Syndrome (also called PMS, but not to be confused with the female monthly cycle issues) after reading this recent blog post on Autism Speaks. PMS is related to autism due to behavioral symptoms (poor eye contact, social anxiety, and perseverative actions) but some question whether the genetic deletion is a cause of autism or if it separates these individuals from other spectrum disorders. Because many of the symptoms overlap, children with PMS may be diagnosed with autism or ADHD or dystonic CP or some combination of these unless a specific genetic test is performed.

PMS is cause by the absence or loss of genes at the tip of Chromosome 22 (a 22q13 deletion). The loss of Shank3/ProSAP2 gene is suspected to be the primary cause of the symptoms associated with PMS. The Shank3 gene plays a role in the formation of the nervous system during fetal development. As in many spectrum disorders, invididuals with PMS may have mild or more severe challenges in several areas, including:

delayed or absent speech and communication
low muscle tone (hypotonia) - delayed sitting up, rolling over, crawling, walking
challenges with eating (sometimes beginning with bottle/breast feeding as a newborn)
sleep disturbances
emotional instability

There are also some physical characteristics that may be present:

may be tall for their age
subtle facial features: long head shape, puffiness around the eyes, long eyelashes, droopy eyelids, puffy cheeks, large ears
large fleshy hands, underdeveloped toenails, lack of perspiration - easily overheat.

Both the autism speaks blog above and an article at the Phelan-McDermind Syndrome Foundation website note that as individuals with PMS get older and more skills are expected they fall further behind and their challenges become more apparent. There is also some evidence that individuals with PMS may lose one skill while they make progress in another area.

PMS and Fragile X Syndrome both present strong arguments for the benefits of genetic testing - basically to receive a more specific diagnosis that will allow more focused efforts in intervention, support, and treatment. Some of the comments from the autism speaks blog article seemed to imply that this level of specificity is not necessary if the child is "accepted" and supported in their education and development. What do you think about these issues? We have not pursued any genetic testing for our daughter (yet) mostly due to financial considerations and insurance concerns. Certian phrases in this article made me wonder if we should, though. For instance similar to the little girl highlighted by Autism Speaks, several people have noted that our daughter is "too social" to be autistic, though that is her official diagnosis. I maintain that though she enjoys being with people she does not understand social constructs...her desire to be with people is a great motivator for helping her learn some of the obvious rules of social behavior, but some of the more subtle interactions still seem to be beyond her reach. I am more curious than ever whether we should consider genetic testing and whether it would clear up some of the mysteries we continue to face, but given our excellent progress to date I wonder how much we would gain. I welcome your input...just click on comments below.

If you are interested in learning more about Pheland-McDermid Syndrome I suggest you begin here.

Rerun Book Review - When I Feel Angry

2011-07-06T23:45:00.000-07:00

Recycling is good, right? I have a movie that I've been wanting to review for you, and I have watched it, but I haven't had the time to really give it all of the attention I usually give to a review. Partly that is because we are back at my mother-in-law's house. You can read a little about how that is going here. Meanwhile this book, which I originally reviewed back in October 2009 would be an excellent read for several members of the household, self included...Since several of you probably didn't know this blog existed back then I will save you the trip through the archives to locate it. Enjoy!

After a day like today I need this book almost as much as my child does. I love the title. It is so realistic. It doesn't say "If I Get Angry" or "When I Am Angry" or "I Shouldn't Get Angry." This book assumes, rightly, that your child will feel angry; it emphasizes that this is a feeling, not a state of being; it even acknowledges that there are times when anger is a fine response. However, it encourages positive ways to work through the anger - taking deep breaths, getting some exercise, or finding something fun to do (distraction!)

I hope I modeled this well at least once today. We were decorating Halloween cookies and my daughter really wanted some of them to have spider webs on them. In my rather limited decorating repertoire this was going to be challenging at best, plus the cookie decorating was supposed to be a structured activity to keep her busy while I was making dinner. Anyway I attempted the spider web but the decorating trip clogged and my attempts to clean it out didn't help. Meanwhile dinner was waiting on the stove and the twins were dancing at my feet wanting attention, too. I said, pretty calmly, "I'm going to have to stop working on cookies now. I'm getting too frustrated." Then I turned my attention to dinner. My daughter was a little upset that we had to stop, but while I finished dinner we processed it a little bit and I emphasized that sometimes when we are getting frustrated we need to take a break.

The story book follows the adventures of a cute little bunny girl as she realizes that some things that make her angry can't be fixed, but some can. She learns to get help figuring it out and to spend time talking and listening to work things out. The pictures are all darling. The text, in my opinion, is written at a great level even for children with language processing issues. The ideas take a little practice to remember and act on in the heat of the moment, but they are all solid re-regulating ideas.

Enjoy!

Profitable and Prepared

2011-07-01T19:04:00.001-07:00

A wife of noble character who can find? She is worth far more than rubies. Her husband has full confidence in her and lacks nothing of value. She brings him good, not harm, all the days of her life. She selects wool and flax and works with eager hands. She is like the merchant ships, bringing her food from afar. She gets up while it is still night; she provides food for her family and portions for her female servants. She considers a field and buys it; out of her earnings she plants a vineyard. She sets about her work vigorously; her arms are strong for her tasks. She sees that her trading is profitable, and her lamp does not go out at night.

I wanted to continue my series on the Proverbs 31 woman...remembering that I'm not necessarily supposed to do what she does but to notice her character, who she is which influences all she does. So far we have seen that she is noble, precious, eager, vigorous and strong (see links in passage above to view earlier posts.) Today I want to focus on one sentence. "She sees that her trading is profitable, and her lamp does not go out at night." Proverbs 31:18 (NIV)

Her trading is profitable. Recall from our earlier studies that the Proverbs 31 woman is quite the entrepreneur. She weaves wool and linen and sells her wares to merchant ships, then uses her profits to buy a field and plant a vineyard. She is a businesswoman, and a shrewd one who wants to make a profit. I am not much of a businesswoman, and in my work with my husband I bring in very little extra income for our family, but I view my role in our finances not so much by what I can bring in as what I can keep from going out. Over the last few years this skill has be severely tested. I still have a lot to learn. I am not, for example, very good at using coupons and that sort of thing. The main way I try to keep money in the coffers longer is by using our resources wisely. My favorite way to do this is to use our food as completely as possible. For example, I love using my crockpot to cook meat, and my husband likes his meat with lots of sauce. Usually after the meat is all gone there is still sauce left over, and for a while I didn't know what to do with it. Now I turn it into soup and get another meal (or two sometimes) out of it. It's simple! Sometimes I throw in some leftover vegetables and/or other meat, sometimes I mix it with a can of store-bought soup. Leftover mashed potatoes make a great thickening agent. Add some broth, milk, or water as needed for thinning. I just imagine the flavors, and guesstimate the thickness. These soups are usually so good that my husband tells me to write down the recipe. Sure - a little of this, a little of that, mix it all up until it tastes good. I love how it stretches the food budget and keeps the leftovers interesting, even for the kids.

That sort of profit is all well and good, but there is an extra layer of meaning here that we can't pass up. Remember that the Proverbs 31 woman is as precious as rubies, which is a picture of Wisdom.

Blessed is the man who finds wisdom, the man who gains understanding, for she is more profitable than silver and yields better returns than gold. Proverbs 3:13-14 (NIV, emphasis mine)

Regardless of our financial footing, finding wisdom and understanding is where the Real profit lies.

photo by Daniel R. Blume via Flickr

The second part of this sentence could mean that the Proverbs 31 woman is awake late in the evening doing her work - weaving or balancing her business books perhaps? However, it reminds me more of the story that Jesus told of ten virgins who were invited to participate in a wedding celebration. (Matthew 25:1-13) Five of them were wise and five were foolish. The foolish virgins ran out of oil to keep their lamps burning, so they weren't ready when the bridegroom came. They had to go looking for oil instead of being able to take part in the wedding celebration. The wise virgins brought their lamps and extra oil, so they were prepared for the extra wait and were ready to party when the bridegroom arrived. Jesus closes the parable by saying, "Therefore keep watch, because you do not know the day or the hour." (Matthew 25:13, NIV) It's interesting that he told this parable just before his final days leading up to the crucifixion. I think this is the same message presented by the Proverbs 31 woman:

Be Wise, be prepared, don't let your lamp go out.

Finding Rest

2011-06-27T07:40:00.000-07:00

The other day I was sitting with a friend telling him how tired I have been lately - that I can fall asleep on the floor for 5-6 hours without even meaning to. Basically anytime I stop moving my body is demanding sleep. He pointed out that when I do things I usually give 164% - meaning I'm not satisfied with just getting things done, they have to be done to the best of my ability and then some. "Give yourself a break."

Then yesterday a firetruck drove by our house - not at all unusual - but the siren wasn't on. The child and my boy saw it and told me about it. When I told them I didn't hear it, the child said, "The siren wasn't on because fire people need to rest sometimes, Mom. That's what God said."

If she gets it, why can't I?

There is a lot to do around here, and I really have been trying to keep up with my regular work plus catch up on a long list of deferred projects. None of it is worth losing rest over, though. So these are some of the things I'm trying to remind myself to do:

Take it when you can get it. My twins still take a nap almost every day. It is one of my favorite times of day. They share a room, and without some supervision at the beginning of nap time they will talk and play (and body slam) with each other instead of going to sleep. Some time ago I started sitting in the room with them, watching them only peripherally while I read or worked on my laptop. If I did not take this time to stop each day I would undoubtedly just run myself ragged. I still get stuff done, but it is quiet, sitting, and it's as close as I get to me time each day. Now what I will do when they stop napping? I dunno yet.
Listen to your body. When it says it is tired it means it. I'm still hoping it's just sleep deficit that has me so drained, but soon-ish I'll be up for my annual check up and will ask the doctor to check for any underlying concerns - anemia or thyroid issues. Meanwhile I'm trying to be good and sleep when I need to. Easier said than done.
Pat yourself on the back for all that you do. This goes to the 164% problem. I have a weekly to do list (seriously it's a spreadsheet that tracks what I do/don't do each week). It's kind of like the half-full/half-empty glass question. Which one will I focus on? I tend to get after myself for the lingering project from November and the other things I didn't do. For some reason I forget the 21 meals (plus snacks) I prepared, the 7 loads of laundry I washed (OK maybe didn't fold), the daily fun activities for the kids, the writing, the office work, etc. etc. etc. that I DID GET DONE! At the end of the week there's way more that I did than I didn't. I need to remember that.
The ultimate source of rest is God. So the main reason I focus on what I didn't do is worry. It always has been my biggest struggle to keep from worrying about things. I used to worry when I didn't have something to worry about. Really. I'm getting better. Still I need to remember that God wants to and will take care of me and provide what I need for each situation.

Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light. Matthew 11:28-30 (NIV)

How do you find rest?

Sunday Digest 33

2011-06-26T21:04:00.000-07:00

Hard to believe it is time for another Sunday Digest already. To be honest I am more than a bit behind on my blog reading...just like everything else. Summer hits and I get busy with the kids and trying to keep up with the dishes and laundry (failing at that, too) many other things get put aside for "later". Here are a few things I've stumbled across that I want to share with you, though...

1) Shortly after my own foray into the "R-word" battle, Autism and Oughtisms posted this lovely piece. I think you will find it quite enlightening.

2) How many times have I wished for someone to help me find resources, set goals, meet milestones? We were quite blessed a couple of years ago to be met in our hour of greatest need by a couple of "experts" who were willing to help us define and achieve some basic behavioral goals for our daughter. Their input made all the difference for us. I certainly wouldn't be writing this blog without them. Autism Speaks published a guest post from an organization trying to get a "life coach" program started for families in need. Here is more info.

3) We had fun last week making our own tote bags following the directions here. I made three bags (one for each kid) from some canvas left over from another project and some cotton webbing I bought last Summer (see how far behind I am??). The sewing took about 2 hours for each bag (I am slow) but it was all really simple - straight lines, you can't go wrong! We decorated ours with fabric paint/marker and some old buttons I found. I will try to post some pics in the art gallery soon. I'm encouraging the kids to use them on our weekly trips to the library this Summer. They love them!

4) Hopefully this week my daughter and I will begin writing a story about how everyone is different. This will be step one in beginning to explain her own challenges to her I hope in a very positive way. On that topic, this post by Resident Alien caught my eye.

That's it for this time around friends...feel free to share your favorite links or fun Summer things to do in the comments below. Enjoy!

Jumpin' Jehosaphat - and other such nonsense...

2011-06-23T08:10:00.000-07:00

Figures of speech are so fun. I use them all the time. It is probably one of the weaknesses of both my speech and my writing. I love a good cliche. I do try to use them in unique ways or to make a funny point about some little piece of wisdom I've gained, but you know what they say about cliches...

The really fun thing about figures of speech is watching my daughter try to process them. The not so fun thing about it is trying to explain when she asks what I mean.

We were all driving in the minivan the other day, or I guess more accurately we were all stopping in the minivan. In fact we had been sitting at an intersection for quite some time waiting for the light to change and there was no traffic coming from the other direction. Of course I was running late and thus a bit impatient to get going. I spoke to the traffic signal to spur it to action (I do also have a way of speaking to inanimate objects that is quite fun). "There's no one here but us chickens!" and immediately regretted my pronouncement. "What chickens, Mom? I don't see any chickens. Where are the chickens?" Yeah...try explaining that one.

The other day at the breakfast table I was being peppered by requests from the twins. More this, please...can I have some banana, please...I want some milk...and I wanted to remind them that Mommy only does one thing at a time, but instead I said, "Hold your horses!" I could see from the blank look on the child's face that she wasn't holding a horse, she didn't see any horses in the vicinity, and even if she did see a horse it wasn't hers and she didn't have any idea how to hold it. I asked her if she knew what I meant and she said, flatly...no. So I explained that was just a funny way of saying 'I need you to wait," and she grinned at me as if to say "Why didn't you say so?"

The best piece of this is when she picks up on some phrase and starts using it herself, in some truly creative ways. Usually it's just a word that she latches on to and carries around with her for a few days...sprinkling it into her conversation wherever she may go. One day, quite a while ago, she overheard me talking on the phone and I asked, "Well what are my options?" Oooh she loved that word "options." All day long and for quite a few days afterward she would ask about her options - even when there weren't any - just because she liked the sound of it I guess. Recently she likes the word "lucky"...as in "I was lucky that I got to use that pencil because I really needed to write." As if there is a vast shortage of pencils and she has stumbled upon one just in the nick of time. Not that I can ever find one when I need one mind you...

I'm wondering if I should introduce her to Jumpin' Jehosaphat...she might find him kind of fun. What do you think?

This post is brought to you by the letter J...as in Jenny Matlock's Alphabe-Thursday. Please visit the other posts Jammin' on the letter J this week!

By the way, sorry I took a week off there. I had a post in mind for Saturday, but haven't managed to research it and work it up. I guess every once in a while I need a week off, but I wish I could see it coming instead of just abandoning you to cyberspace...hopefully I'll get more into the swing of the Summer schedule soon.

Book Review - Sammy the Classroom Pet

2011-06-15T15:08:00.000-07:00

Some time ago I decided I wanted to host our preschool's pet guinea pig for part of the Summer months. While I was thinking about it I spied this book at the library and brought it home to see if it sparked any interest with the kids. I had three pet guinea pigs when I was growing up (one at a time) and Sammy looked a little like my favorite one, who was named Charlie. It turned out to be a really good idea to get this book for a couple of reasons.

First, we did end up bringing home Pepper for at least a couple of weeks, so reading the book ahead of time heightened the kids interest in helping to take care of her. The first few weeks of Summer while we are decompressing from school and waiting for our Summer activities to start can be a little hard to keep fun. Pepper has added some real interest to our "hanging out at home" times.

Second, the story of Sammy is more than just a story. It weaves a lot of small animal care information into the story. It talks about the noises they make (WHEEP!!) and what they need in their cage. It talks about how excited they get, and how they are very social and love attention from their caregivers. It even talks about some of their favorite foods, which now has my kids searching the yard for dandelion leaves which are apparently a guinea pig delicacy. The illustrations are adorable, and the text is easy to read and understand. My struggling reader picked it up independently several times. She even read Sammy to Pepper. Fun!

Sadly Sammy had to return to the library today, and Pepper will only be with us for a short while, but I think together they have made a great impression on all of my kids, and made Summer very sweet.

Here's hoping I haven't fed the "can we get a pet" fire...not ready for that...yet.

He is There

2011-06-10T00:24:00.000-07:00

I want to take a break from the Proverbs 31 series to share an insight gained in my small group Bible study earlier this evening. We are studying Jesus Christ: The Greatest Life Ever Lived, which combines the four gospel accounts into one amazing story of Jesus' life and ministry. We were reading the fairly familiar story of Jesus calming the storm. Here is the account from Mark 4:35-41 (NIV). You can also find the story in Matthew 8:18-27 and Luke 8:22-25:

     That day when evening came, he said to his disciples, "Let us go over to the other side." Leaving the crowd behind, they took him along, just as he was, in the boat. There were also other boats with him. A furious squall came up, and the waves broke over the boat, so that it was nearly swamped. Jesus was in the stern, sleeping on a cushion. The disciples woke him and said to him, "Teacher, don't you care if we drown?"
     He got up, rebuked the wind and said to the waves, "Quiet! Be still!" Then the wind died down and it was completely calm.
     He said to his disciples, "Why are you so afraid? Do you still have no faith?"
     They were terrified and asked each other, "Who is this? Even the wind and the waves obey him!"

There were several thoughtful questions in our study guide, but the one that hit me the hardest was, "Why do you think the disciples waited to wake up Jesus?" You need to remember that a good number of Jesus' disciples were fishermen. They were quite confident of their ability to handle a boat. You also need to know that the Sea of Galilee is geographically prone to sudden, intense storms. Warm, humid air over the lake intersects with cool air funneled in by the nearby mountain passes. These men had probably handled storms before in their boats. There wasn't a lot of time or warning when this storm started, so they just got busy bailing water and taking in sail, and doing whatever else they needed to do to stay afloat. Waking up Jesus seems to be an afterthought when things were getting desperate. Maybe they thought he should help bail water, or at least be ready to abandon ship. In any case they are baffled that he is sleeping through the whole thing.

It's easy to think in my 21st century perspective that these disciples just didn't get it....until I realize that I do the same thing. When "storms" arise in my life I get busy. Maybe the challenge is unexpected, maybe there is just a lot to do, but for whatever reason I throw myself into the activity of making it through the storm forgetting that the One who can help me calm the storm is there the whole time. Quite often my boat is nearly swamped before I turn to Jesus with my favorite prayer, "Help!" Why do I wait so long? Because I think I can handle it, because I'm busy, because I forget that he is there.

In the story Jesus is sleeping. His physical body was fatigued from the many hours of teaching and touching lives that he had just experienced. We, however, can be assured that he does not sleep, nor does he slumber (Psalm 121:3). He knows the storms we are passing through and he is there, waiting and wanting to help. We just need to ask. In the story Jesus rebukes the wind and waves and everything becomes calm immediately. I don't think we are promised this same result. There are storms that He asks us to go through, but if he will not calm the storm he will calm us.

He is there and he is in control.

Sunday Digest 32

2011-06-05T21:10:00.001-07:00

I hope, dear reader, that you will enjoy these lovely links as much as I have. While I don't have time to read everything that is out there (who does?) when I find something I like I set it aside to share it with you. These are the best that I've seen out there. Be sure to let them know you found them through The Simple Life...and thank you!

1) Here is a great post about enjoying life with our kids...loving being a Mom instead of being a therapy coordinator and advocate. Not that those parts of special needs parenting aren't important. They are, and we really can't avoid them, but taking a step back to snuggle on the couch or do some art just for fun can be just as important - for us and for our kids. (By mom2spiritedboys at Hopeful Parents)

2) Interesting how different diagnoses can lead to similar...um...challenges. This post (also at Hopeful Parents) is about a little boy with Prader Willi Syndrome who likes to have the same conversation with his mom over, and over, and over. We have similar conversations at our house. It gets old. For my daughter sometimes there is just a communication breakdown - either I'm not understanding what she's asking or she's not understanding what I'm answering. But sometimes it is just comfortable to re-tread the same conversational path, like slipping on your favorite shoes. Why try anything new when this works so well? (By Lisa Peters)

3) So the DSM is due to be revised in 2013. The DSM is the big gray book on Doctor's shelf that is used to describe all the various conditions and disorders so that everyone uses the same rules when they give a diagnosis. Or that's the idea anyway. This is where the criteria for autism, high-functioning autism, PDD-NOS, and Aspergers Syndrome (the full spectrum) are outlined. There will be some changes which are already being hotly debated in the autism community. I haven't spent much time reading or thinking about it yet, which is partly why this post at Autism and Oughtisms intrigues me. There's certainly plenty to think about here, and useful links regarding the specific proposed changes at the bottom.

4) Something no one wants to think about, but we all should - what happens to our special needs children when we're no longer here. Of course we all plan to stick around, but no one is promised tomorrow and no one is immortal. My fellow 5 Minutes for Special Needs contributor, Lee, posted a great piece about some key things to put in order. This is a must do.

5) Lastly, I love this story about a teacher encouraging one of her students to use his skills to benefit other students. Isn't this what education is supposed to be about? (By Joanna L. Keating-Velasco at OUR Journey Thru Autism)

The Simple Life Is Getting Around!

2011-06-03T15:42:00.000-07:00

Fellow blogger Nancy Hird at Books 4 Christian Kids re-posted my review of the book Whole Body Listening Larry at Home on her site. Be sure to head over there and check out Nancy's other recommended titles. Thanks, Nancy!

Giving

2011-06-02T13:46:00.000-07:00

G is for giving. Giving gifts is one of the ways that people express love for one another. My husband loves to give gifts. My daughter also loves to give gifts. I'd like to think it is something I've taught her, but really I think I am learning from both of them. I think it is an innate part of their personality to be so generous and to want to express love in this fashion.

It's been more challenging lately to Give gifts the way we'd like to. Between the economy and the several challenges we've faced over the last few years, we're still finding ways, but the gifts have been more "from the heart" lately instead of from the pocketbook.

Last night my daughter decided to draw portraits of all four first grade teachers at her school to thank them for being such good teachers. She drew them, colored them, and wrote her little message to each teacher. The effort that she put into this was heart-warming. It was fun watching her deliver them this morning.
The other day I made "Cheesy Vegetable Pie" for our family. I enjoy this recipe but hadn't made it for a while because I wasn't sure if the kids would like it. They've been enjoying vegetables more, especially zucchini, and that's one of the main ingredients, so I decided to make two pies (I always like to cook enough for two meals). Wouldn't you know it the kids' tastebuds still aren't quite ready for this one. The child liked it, but the twins did not. So my husband Gave the other pie to some sweet friends who have been through thick and thin with us the last few years. They are vegetarian, so it was a perfect match.
Our favorite children's librarian from our local library is retiring, and we wanted to let her know how much we would miss her. She, again, has been a real Gem for our family for so many years now. Storytime just won't be the same without her. At a recent craft day she showed us how to make ziplock bag books, so we made her a ziplock bag book as a parting Gift. We used some nice scrapbook paper to make the pages, and added photos of her and our family. I had each of the children make a picture for her. I delivered it today, and it was so fun to Give it to her.

These are just a few examples that haven't cost us anything, but hopefully have meant a lot to the recipients...Giving is so important. It blesses others and in return it blesses us with fun, creativity, and joy.

Give, and it will be given to you. A good measure, pressed down, shaken together and running over, will be poured into your lap. For with the measure you use, it will be measured to you. Luke 6:38 (NIV)

One last Gift for you...the recipe for Cheesy Vegetable Pie. Enjoy!

This was originally published in 1992 in the Wall Street Journal by Millicent Nathan

2.5 C thinly sliced zucchini and yellow squash
0.5 C thinly sliced mushrooms
1 C thinly sliced carrots
1 C chopped red onion (sweet)
2 T butter
2 T parsley flakes
1/2 t salt
1/2 t pepper
1/4 t garlic powder
1/4 t basil leaves
1/4 t oregano leaves
2 eggs, well beaten
8 oz shredded mozzarella cheese
8 oz can refrigerated crescent rolls or prepared pie crust
2 t prepared mustard

Preheat oven to 375. In large skillet, cook carrots, onion, zucchini, squash and mushrooms in butter until tender, 8 minutes. Meanwhile, beat eggs and mix with cheese in a large bowl. Separate the crescent roll triangles and press into an ungreased 10 inch pie dish, sealing seams and covering the bottom and sides of the dish (or use your prepared pie crust). Spread the crust with mustard. Add spices to the vegetable mixture and mix. Add vegetables to the egg and cheese. Pour egg and vegetable mixture into the crust. Bake 22 minutes. Rest 10 minutes before serving.

This post is participating in Jenny Matlock's Alphabe-Thursday.

To check out the other creative G posts, click here.

Homework

2011-05-30T21:35:00.000-07:00

Yes, my daughter is just finishing first grade and we have homework. I admit I have mixed feelings about this. I don't remember doing much homework when I was in first grade, but then I don't remember much about first grade. It seems like certain academic skills are getting pushed down to earlier grades. For instance fractions and some simple multiplication concepts were introduced in my daughter's class this year. I don't remember learning about multiplication until 4th grade, but then no one's expecting her to memorize times tables (which is what we did when I was in 4th grade)...and they explained fractions by making pizzas out of paper and cutting them into equal portions. I'm worried about all of this acceleration of the academic world. I've written about it before, and encourage you to consider watching "The Race to Nowhere" - a documentary that discusses this topic on the high school level (before release it was called "Slipping Behind"). So I'm a bit sad that my daughter even has homework at her age, and particularly since it is hard for her to manage on her own. It is really more work for me - to get her started on it, to help her understand the directions, to make sure she follows through, to check it, to correct without leading her to the answer or making her feel like she failed, to make sure she turns it in...Then again it is one of very few chances I have to assess for myself exactly where she's at academically. To see that she still mixes up plus and minus, to see that translating words into math problems is almost impossible for her, to see that her phonetic spelling is still a bit off.

So here are a few things I learned this year:

Homework is tough for everyone. My volunteer position at school this year involved collecting the homework sheets at the end of the week. I was reassured to note that we aren't the only family that had trouble getting it done. We did more than some families, and less than others, but each family at one point or another needed a break and took it. It never resulted in the world ceasing to spin.
Be flexible if possible. Our first grade teachers asked us to read each day with our child and then they listed several suggested activities to do during the week. They generally asked us to pick three to do. This was wonderful for us because having a choice is always empowering for my daughter. It fit right in with our general strategy of approaching hard things. "Would you like to do x or y?" Where x and y are both things we can live with that get us to our goal, in this case getting homework done. You may not have a choice about what you do, but you can choose the order, or how much to do now versus later, or if you want to use a pen or a pencil, etc.
Stay organized. This is the hardest one for me. Monday we would get our homework sheet. Friday we were supposed to turn it in. Sometimes I would find it buried on the kitchen island on Thursday night with nary a thing written on it. On my best weeks we would clip it to a clipboard and keep it in a place where I would see it every evening after dinner. We would pick one activity and catch up the reading log, then Thursday it was ready to put in the backpack all set to go to school. I liked those weeks best.
Take a break if you need it. When we hit rough patches over the year homework was the last thing on my mind. Busy work times, mild regressions for my daughter, major challenges with my mother-in-law...we would still do our reading, but if we didn't get the rest done I didn't sweat it. Like I said, the world kept on spinning.
Talk to the teacher. Whenever I felt like we needed a break I would check in with the teacher. She was always understanding. She assured me that reading was the most important thing. She understood when we were working on big projects (like Science Fair) and often had good ideas of things to try to make it easier. You may be stressing out about it more than the teacher intends, so it's always a good idea to check signals.
Get it in writing. I'm told that it is possible to get homework accommodations and revisions written into your child's IEP. We have not found this step to be necessary yet, but if we do it's nice to know. This way there is no confusion about what is expected of you and your child, and that's always a good thing.

Since we're pretty new to this homework journey I'd love to hear your ideas as well. What works for your family? What challenges have you had and how do you address them? Thanks for sharing your thoughts! Just click on "comments" below to leave a comment or read what others have to say.

Auditory Processing Disorder

2011-05-28T21:40:00.000-07:00

Maybe your child's teacher has told you that she is struggling with reading and that she doesn't seem to pay attention to the directions given for assignments. You've noticed that if you ask her a question when the radio is on that her answer may not relate to the question you asked. Maybe she can't remember her home phone number or writes numbers out of sequence. Perhaps you've had her hearing checked and she passed with flying colors, but she is becoming discouraged by school and you're wondering what's going on. One possible explanation could be an Auditory Processing Disorder (APD), which is sometimes called Central Auditory Processing Disorder (CAPD.)

In APD the physical function of the inner ear is in tact, but somewhere along the line as the sound is transmitted to the brain and processed for information to act on, the signal is scrambled or misinterpreted and is acted on incorrectly. This can lead to big challenges with learning and behavior.
Because it can have similar symptoms, APD can be confused with Attention Deficit Disorders (ADD) or Pervasive Developmental Disorder (PDD). APD can also occur in addition to these or other disorders, so it is important to get a full evaluation from a qualified professional to best understand exactly what is happening with your child.

There are several different auditory skills that may be affected by processing disorders:

Auditory Discrimination - ability to distinguish and segment words into individual sounds - key for reading and writing
Auditory Figure-Ground Discrimination - ability to focus on important auditory information amid background noise - listening to directions in a noisy environment
Auditory Memory - ability to recall information heard in the short term or long term - important for remembering names, and following directions.
Auditory Sequencing - ability to understand and remember the order of words - remembering lists or sequences like phone numbers or addresses.

There are several different types of "auditory training" available for treating auditory processing disorders. There are some software packages that can be used even at home (earobics is one I've heard of but haven't tested so consult with your professional for advice.) Speech therapy and environmental modifications (removing background noise, sitting near the teacher, etc.) will also be helpful.

For more basic information start here NIH
For an (adult) personal perspective Andrea's Buzzing About
More information on the different auditory processes from NCLD

Book Review - Signs of Trouble

2011-05-25T23:04:00.001-07:00

The first paragraph of Signs of Trouble puts you into the shoes of the main characters, Amy and Kim. Excited to be on a field trip with their special education classmates, they enter a shopping mall and take in the intense aromas and sounds of the setting. The sounds and some other distracting events, like needing to use the restroom, cause Amy and Kim to get separated from their class. What will they do? They use the skills they came to the mall to practice, and some safety rules they've learned from their teacher to eventually reunite with their class.

What Mom hasn't experienced that heart-stopping feeling of getting separated from our kids? For parents of special needs children it seems even more threatening. Will they remember the rules we've told them? What if they panic and can't remember anything? What if they can't find an adult to help them? We recently had an experience at school that made me even more aware that I need to help my daughter learn good "emergency" skills.

One feature I love about "Signs of Trouble" is the creative exercises at the end of the story that could help support the learning of emergency skills. There are also some activities related to understanding learning differences, another topic that I'm planning to spend some time talking with my daughter about this Summer.

I adore the art work by Jack Foster in this book. It has the right blend of colors and shading to help children focus on the key features of the picture. The characters remind me of the increasingly popular Manga art style. Most importantly, the pictures do not conflict in any way with the text, instead they help us understand - like the picture of the telephone cord dangling feet above the heads of the girls as they wonder which number it is they're supposed to call when they get in trouble.

The story line seems like just the right level of conflict for children - not so scary as to be frightening - but clearly some problems they can relate to, like a stranger approaching them when they are already nervous about being lost. There is a fair amount of text on each page, which might make it challenging for early readers, but the story line is straightforward and well stated. Overall this is a great book to read if these are topics you would like to talk about with your children or students.

Disclosure: Janet Ann Collins, author of "Signs of Trouble," is a writing acquaintance of mine. We've only met once in person, but correspond a bit by e-mail and facebook. She asked me to review her book and was kind enough to send me a pdf copy to that purpose. I received no other compensation for this review, and as always have given my honest appraisal of this lovely piece of work.

Vigorous and Strong

2011-05-20T23:31:00.001-07:00

A wife of noble character who can find? She is worth far more than rubies. Her husband has full confidence in her and lacks nothing of value. She brings him good, not harm, all the days of her life. She selects wool and flax and works with eager hands. She is like the merchant ships, bringing her food from afar. She gets up while it is still night; she provides food for her family and portions for her female servants. She considers a field and buys it; out of her earnings she plants a vineyard. She sets about her work vigorously; her arms are strong for her tasks. (Proverbs 31:10-17, NIV)

We continue to add to our picture of the Proverbs 31 woman. So far we have seen that she is noble, valuable, and eager to work. This time around verse 17 tells us that she works vigorously and that she is strong. We have already seen that her work involves making fabric, both for her family and as a business. We see here that she also provides food for her family and servants, and that from her business profits she buys land and plants a vineyard. She is quite the entrepreneur! The key thing to remember is that this is her work. My work is different, and your work is probably quite another thing altogether...the things we want to emulate are not her work or her skills, but her character. What attitude does she bring to work with her?

We've already seen that she is eager. She looks forward to getting her cloth made, and now we can see at least one reason why - it is profitable! She makes money from her cloth. She makes enough money to buy land, enough land to plant a vineyard. She typifies the diligent hands praised elsewhere as the source of wealth (e.g. Proverbs 10:4.)

Today we also see that she is vigorous - active, robust, energetic, sturdy, healthy. Interestingly, the word vigorous is used to describe the Hebrew women enslaved in Egypt before the time of Moses. The midwives in Egypt were told to kill the male Hebrew babies as a method of population control, but the midwives feared God and told Pharoah that the women were "vigorous" and gave birth before they could arrive and obey his edict. That's a powerful image! The Proverbs 31 woman is also strong - solid, not easily broken or injured. She takes care of herself so that she can take care of her family.

Self-care is so essential, and so hard to remember. In the press of school drop offs, healthy cooking,
laundry, after school (fitness!) activities, and social opportunities that we seek for our children there has to be time to take care of us, too. I know I have really struggled in this area over the last couple of years. After the twins were born I put off dental visits for myself for a while - I was busy driving the child around to various evaluations, social skill therapies, speech therapy, etc. and seeing to the basic care of the twins. There just didn't seem to be time for taking care of that filling that needed to be replaced. By the time I took care of it I needed a root canal. Lesson learned...sort of. I'm caught up on my dental work now. I have been trying to take better care of myself by walking a lot, eating better, and sleeping as much as I can. I can still tell I'm not in very good shape muscle strength-wise, but at least I am trying whereas before I was just running myself into the ground, literally.

So, note to self and to you as well. The Proverbs 31 lady was certainly busy, but amid all of her work she made sure that she was in good shape, too. Permission granted - take care of yourself!

Sunday Digest 31

2011-05-15T21:19:00.000-07:00

Here is the latest and greatest...the posts that I found particularly helpful, inspiring, moving, or funny in the last few weeks. Click on the links from my on-line friends and if you leave a comment make sure to tell them you found them via Simple Life. Thanks!

1) I loved this post by Autism & Oughtisms exploring speech development and how much more one can notice each stage when there are delays. Little things like learning to say "um" when you're having trouble thinking of the right words...I remember being so excited when my daughter learned to say yes when she meant yes. So important.

2) My fellow 5 Minutes for Special Needs contributor, Lee, shared about their annual "prom night" sponsored by a local high school for teens and adults with special needs. It sounds like a wonderful evening for everyone who is involved.

3) Bird on the Street hit a home run with this post about raising a special needs child. Yes, there are challenges but maybe not the challenges you would expect a parent to be bothered by.

4) Having a sibling with special needs can be...challenging. This brother seems to have it figured out. Thanks for sharing, Mary Hill at Hopeful Parents.

5) And this post, from Specialgathering is just plain funny.

Distraction

2011-05-12T16:29:00.000-07:00

I snapped this photo about a month ago. Looks innocent enough, but it was quite jarring to me when I saw it. I had just dropped my daughter off at school and was rushing home to get her siblings to take them to preschool. I was hoping against hope that Daddy would have them ready to walk out the door because I had a long list of things that needed to be accomplished that day. Then I spotted this formerly iced caffeinated beverage abandoned outside the community theater near my daughter’s school, and it gave me pause.

Someone had woken up that morning, or maybe the day before, craving their favorite iced coffee. You know the large half-caff, frap with extra cream, no sugar, and a dash of whatever. OK – I made that up. Can you tell I don’t drink these kinds of things? Anyway…they had a full day planned, but couldn’t live without their coffee fix, so they went out of their way to get to the coffee shop, stand in line and pay an outrageous amount of money (probably $5 – enough to pay for a gallon of gas anyway) for their coffee. Somehow they ended up at the theater. Maybe part of the day’s agenda was to see a show there. Maybe they walked their dog to the coffee shop to justify the trip. For whatever reason they stopped near this bench put down their drink and then something…whatever it was…distracted them and they moved on with their day completely forgetting the craving, the effort, the time, and the money they had spent to get that coffee. It was not, by the way, abandoned for just a few moments. It sat there for a few days before some kind soul finally disposed of it.

The abandoned coffee is an emblem of something I feel is perhaps horribly wrong in our culture right now – Distraction. There’s nothing wrong with craving and getting a special treat, but there’s something sad about losing that treat to an external force that prevents us from truly doing what we want to do.

I think what scares me about this, and I don’t think scares is too strong a word, is the effect that Distraction has on our ability to recognize and do what is most important. We are increasingly pulled in so many directions that it is easy to lose track of what is most vital. We make mistakes. We cut people off with thoughtless words. We get wrapped up in emotional debates. We forget. We lose. We walk away.

Two people I love currently struggle mightily to overcome Distraction. My daughter is striving to learn all she can, though affected by autism, and my dear mother-in-law, is working hard to remain independent though increasingly impacted by dementia. Both of them battle the Distraction demon from different ends of the age spectrum. Meanwhile I fill my life so full that I am just barely functional. I must begin to reclaim the margins of my time, thought, and energy if I am going to make it for the long haul. I am not sure how to go about this, but I don’t want my life to look like this picture. I want to truly enjoy every drop of what life has to offer. I don't want to walk away half finished.

I am linking this post with Jenny Matlock's Alphabe-Thursday. We are up to the letter D, if you didn't catch that. Click here to check out the other creative entries, and thanks as always to Jenny for hosting!

Clean Up Time

2011-05-09T22:07:00.000-07:00

Our house had reached near disaster status. I freely admit that I am not a good housekeeper. Truth be told it is my wonderful husband who cares about how clean the floors are and whether or not we can see through the windows. I figure I'm doing good if we have clean plates to eat off of and clean clothes to wear. Dusting - ha - will just have to wait. My husband has been way too busy lately, too, so we were in a bit of a state.

In particular I seem to be the main person who tries to put things away at our house, and I'm not even that good at it. Usually I'm dashing in the door with arms full of stuff, dropping that here and there while gathering a new arm full to dash back out the door again, leaving the detritus of busyness behind me. But eventually when I have a quiet moment I endeavor to put away my stuff, and my kids' stuff, and even some of my husband's stuff, but I can't keep up. I was spending what little time I was willing to devote to housekeeping (beyond the dishes and laundry) just putting things away, and falling ever more behind.

Want more motivation? Someone was coming to our house, and the house needed to look good for this person. This wasn't my best friend who would understand the topsy turvy nature of our lifestyle. This was someone who needed to see the house at its best. Three days notice, too - just to up the ante. Ha - I say it again.

Well, I decided to take a lesson from my twins' preschool. Twice during the class session there is "clean up time" and everyone participates. The children are given specific jobs to do, and the adults model, supervise, and encourage. So on day one, in between cleaning things myself I talked often to my children about having a clean up time that evening. After dinner, and before jammie time, we set the timer for 15 minutes, and we all worked together to clean up their bedrooms and the toy room. The next night we did it again. There was some complaining and some stalling, and some whining, but because we were right there with them, eventually everything got picked up and put away. On the third night my oldest daughter said to me, "Mom, if I keep my room clean during the day I don't have to do as much during clean up time."

AAAAH!!! I could almost hear the angels singing!

So now the kids seem to understand that if they make a big mess they will be the ones who clean it up later. Guess what?? There are fewer big messes. My oldest is particularly doing a great job maintaining her room in a nicely organized state. When I get time to do housework (still a rarity) I can spend it actually cleaning instead of just putting things away. And it's not a big deal now when people come over...the house is staying tidy enough to be presentable, at least to my best friend. I hope I never forget about clean up time. It is such a handy tool.

Now, about those windows...

ADD/ADHD Primer

2011-05-07T21:51:00.000-07:00

This post may be a little controversial. There are some who would claim that Attention Deficit Disorder (ADD/ADHD) is not a real disorder. Their argument runs something along the lines of, "ADD is over-diagnosed. Kids are just being kids, their parents don't know how to control them and the doctor slaps on a label and gives them drugs to make them all feel better."

First of all, even if ADD is over-diagnosed (which it may be), that does not mean that there are no real cases of ADD. Second, ADD is not just a childhood disorder, adults can struggle with ADD, too. Third, ADD is not caused by poor parenting, though parents of ADD children may need to learn modified parenting techniques in order to most effectively support their child. Fourth, since when does slapping a label on your child and/or needing to give them medication make a parent feel better?

Some people seem to think that even if ADD is a real disorder, it isn't a real disability, but ADD is recognized as a disability under federal law. Accommodations must be provided by employers and schools to individuals diagnosed with ADD.

Here are some facts about ADD:

There are three different kinds of ADD: combined type, predominantly inattentive type, and predominantly hyperactive-impulsive type (sometimes called ADHD).
It is estimated that up to 6% of people in the United States have some form of ADD.
Half of children diagnosed with ADD will struggle with related issues into adulthood.
A person with ADD is distractible, impulsive, and hyperactive to a degree that impacts their schooling, work, and/or social life.
These challenges must appear before the age of seven, must last longer than six months, and must be excessive - over reaching the usual distractions of childhood and our hectic lifestyles.
Other medical conditions may mimic ADD symptoms, so careful screening and diagnosis should be performed by a medical professional.

According to scientific studies, ADD is not caused by television, too much sugar, or food allergies. Functional brain images show that in people with ADD the areas of the brain responsible for maintaining attention use less glucose (are less active) than the same areas in a normative peer. There is some indication of a genetic link since families with one person with ADD have a higher rate of another family member also having ADD than the general population.

ADD is generally treated with a combination of medication and counseling. Stimulants such as ritalin, adderall, and concerta are used to help people with ADD focus. Counseling can help people with ADD learn better organization skills and other coping mechanisms.

To learn more about ADD, start here.

Book Review - Thinking in Pictures

2011-05-04T23:06:00.000-07:00

I recently finished reading Temple Grandin's book, Thinking in Pictures. I had already read her earlier work, Emergence, Labeled Autistic and reviewed it here. I have to admit I am fascinated by her life and soak up everything I can learn about her and from her. To date this is the closest thing I can find to getting inside my daughter's head to understand more about how she experiences the world around her. That may sound strange if you aren't familiar with the language barrier that we still struggle with just to relate events of the day. Yesterday my daughter told me she had said a "bad word" at school and had to promise the principal she wouldn't say it again. After several minutes of asking questions and deciphering I learned that she had said, "stupid clock" and evidently somehow the principal found out (maybe just the "stupid" part) and sat down to talk with her about it during lunch. I still don't know if she was in trouble over it, or how the principal found out or a lot of the other details. Talking about these things too much (giving them too much attention) can sometimes backfire into repeat performances, which obviously I want to avoid since she promised the principal she wouldn't say it anymore. So after learning enough to get the general idea I changed topics (knowing in the back of my mind that I may need to follow up with the principal at some point). This is just one daily incident that a neuro-typical kid either wouldn't tell their parent at all (for fear of getting in trouble) or would be able to explain fully without being lead along by questions and clarifications. Imagine trying to really probe her emotions (which she doesn't really get anyway) or asking her to explain how she perceives light, sound, temperature, surprises or facial expressions...all topics that I'd really like to understand better.

Temple Grandin has been there and has enough written clarity to explain her experiences in terms that I can understand and relate to. I have no illusions that her experiences are identical to my daughter's, but particularly in Thinking in Pictures she has also interviewed other adults with autism to supplement her own experiences and give a more well-rounded description of how autism affects the way people think.

I found the idea of thinking in pictures to be a little hard to grasp. I am a very weak visual learner (maybe because I have had poor eyesight since age 6?). I am more auditory and kinesthetic. Still when Temple talked about running a video in her mind to visualize a new piece of equipment or a new design project, I could relate it to my own tendency to replay conversations in my head -- usually coming up with the perfect comeback hours after it is needed. I am not sure if my daughter is visually oriented or not. I know that visual aids (schedules, signs, rewards, etc.) are helpful to her and that she has an amazing sense of color, but I don't know if she remembers things visually or not. I'll be looking for signs of this skill.

The other key analogy Dr. Grandin makes in Thinking in Pictures is the similarity of fear-based responses in animals (particularly cattle) and individuals with autism. She talks about the loud whooshing sound of air-brakes on buses and semi-trucks and how they can cause cattle to balk. Although my daughter has overcome a lot of her anxiety triggers, this is one thing that she still struggles with. As we walk to school she often walks with her hands over her ears when buses are nearby and sometimes freezes and refuses to walk past them. I can't understand the root of this fear, but knowing it is a common trigger I try to remember to just support her as we walk by instead of getting frustrated when she freezes. There are other anxiety triggers that we continue to work around and take baby steps toward eliminating. Many of them have to do with restrooms - another place where that whooshing sound occurs and in this case has added other associations that trigger anxiety - doors that don't latch, automatic flushing mechanisms, stainless steel fixtures, multiple stalls, and on it goes. One trigger begets many triggers and any one of them may peg the anxiety meter and make an everyday event become an obstacle to surpass.

There is also a chapter on Dr. Grandin's religious views, which was interesting to read. I think my daughter is beginning to understand on a thought level the tenets of our Christian faith, and I am hopeful that soon she will make that faith her own in her heart. It was interesting to see how Dr. Grandin thinks about these things. There is also a chapter about dating and romantic relationships which may be important a little later on here...

Although I don't think I learned a lot about the main points of autism, Thinking in Pictures sort of filled in the details and made some of the finer points come into focus. I recommend reading it if you have a similar passion of wanting to understand this challenging disorder.

Rebuilding the Walls

2011-04-29T17:36:00.000-07:00

I am taking an intermission from my series on Proverbs 31 to write about something that jumped out at me the other night during our kids' story time of all things. We have some books that my mom gave us with ideas on how to answer some of kids' biggest questions about God and the Bible. Even though they are geared toward older kids our twins love carrying them around and calling them their "Bibles". So cute. They often choose to hear one of these as their story, too.

The other night they picked "102 Questions Children Ask about the Bible" and the question was:

"Why didn't the Jews ever change their clothes while they were rebuilding the walls?"

My ears perked up - maybe because I was folding laundry while Daddy was reading - is this a Biblical mandate for laundry reduction?? We read on...

You are probably familiar with the story of Nehemiah. He was cupbearer to the King - of Babylon. (Nehemiah 1:11, NIV) He was also a devout Jew and was devastated to hear that the walls of Jerusalem lay in rubble. The walls of a city at that time bespoke its reputation and more importantly provided the main defensive strategy against invaders. The Jews had been in exile in Babylon, but a remnant had returned to live in Jerusalem, still under Babylonian authority. The walls were broken down and the gates were burned. Attempts to rebuild had been labeled rebellion. Nehemiah prays, and given the opportunity, boldly asks the King for permission to return to Jerusalem and rebuild the city. Nehemiah returns to Jerusalem and devises a strategy for rebuilding the walls. It is a community effort, but not without opposition. Detractors within and without seek to keep the walls in disrepair. Discouragement, ridicule, threats, and fatigue faced them at every stage of the rebuilding. But, "the people worked with all their heart." (Nehemiah 4:6, NIV) Part of their strategy was to always be prepared for work and for a fight...half of the men did the work while half were equipped with weapons. "Those who carried materials did their work with one hand and held a weapon in the other." (Nehemiah 4:17, NIV) Lastly, they didn't spend a lot of time on creature comforts:

Neither I nor my brothers nor my men nor the guards with me took off our clothes; each had his weapon, even when he went for water. (Nehemiah 4:23, NIV)*

As I have continued to ponder this story over the last couple of days, I can't help but see some analogies to our own family. The last four years have been pretty brutal, in part from choices we made and in part from the vagaries of living in a fallen world - stuff happens. I can't list everything we've been through, but suffice it to say it has been a lot. Just when we think we're getting our feet back under us another wave of circumstance bowls us over and leaves us wondering how we'll rebuild this time. I think, without realizing it, my husband and I have followed the example of Nehemiah. We work hard. We try to prepare and react well to each situation that we face. We have trimmed away at luxuries that we once considered commonplace. I think that we can do more, though.

In particular I am considering the weapons that Nehemiah dispersed among his crew. In their case they had their spears, their shields, their bows and their armor at the ready. The weapons we need are not physical, but spiritual, and are described for us in Ephesians 6:14-18 (NIV):

Stand firm, then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, and with your feet fitted with the readiness that comes from the gospel of peace. In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. Take the helmet of salvation and the sword of the Spirit, which is the word of God. And pray in the Spirit on all occasions with all kinds of prayers and requests...

We need to work with one hand and be ready to fight with the other. We have the same enemies of discouragement, ridicule, threats, and fatigue hurled at us in the spiritual realm. Only God can provide us with the strength to keep rebuilding for His honor and glory.

If you find yourself in a similar position, and I know many people do these days - we aren't the only ones who have been beaten down in the last few years - I hope you will be encouraged to read the story of Nehemiah. In the end they overcome, and so shall we!

* I had to laugh when the NIV version was different from the version in the 102 Questions book. I'm not sure which version they used (it is not cited) but they quote: "During this time we never took off our clothes, except for washing. This included me, my brothers, the servants, and the guards who were with me. And we carried our weapons with us at all times. (Nehemiah 4:23)" It was the phrase "except for washing" that caught my attention. Were they washing the clothes or themselves? It is unclear. Since this version differed from the NIV I looked at the footnotes in my study Bible and saw this note, "The meaning of the Hebrew for this clause is uncertain." I believe this refers to the "even when he went for water". To me it looks like one version interpreted this as washing (something) and the other interprets it as going for water. I am no Hebrew scholar and haven't studied the Hebrew text here, but my guess is the verse should read: "...each had his weapon, even when he went to the bathroom!" Every mom I know can relate to that translation! :-)

Guest Post

2011-04-25T07:29:00.000-07:00

I am excited to be guest posting over at Barbara Manatee's blog (My Sweet Life) today. Barbara is hosting a series in honor of Autism Awareness Month and I was honored to contribute today. Please head over there to check it out. A Rose is a Rose. Thanks, Barbara!

Sunday Digest 30

2011-04-24T01:41:00.000-07:00

Sunday Digest is turning 30...and it's Easter evening, after a long busy weekend, so this is going to be short and sweet. Sunday Digest needs its beauty sleep and so do I. These are the sweetest links I've found recently. Visit these other sites and let them know you found them through The Simple Life. Thanks!

1) One of my favorite fellow autism mom bloggers (Autism and Oughtisms) posted this review of her son's first term at a special needs school. She is in New Zealand, so their system is a bit different from things here in the States, but it is lovely to hear about how they have found just the right program for him. My dream for every child, special needs or no.

2) One of my favorite adults with autism bloggers (Reports from a Resident Alien) posted her ideas about disability and difference. I love getting her inside the disorder perspective.

3) Hopeful Parents is a group blog that has a wonderful set of writers from a variety of families affected by all sorts of Special Needs. Spectrummy Mummy posted a story about rewards for her daughter and the unintended rewards for herself, too. Very encouraging.

4) Another fellow autism mom blogger (Squashed Bologna,) who I particularly love following because she is also dealing with sandwich generation stuff like our family, has started a series on all of the issues surrounding siblings with special needs. So far what consequences we've had in this arena have been felt by us as parents more than our kids, but I am reading with interest for future days when this will be a hot topic around our house, to be sure.

5) My fellow 5 Minutes for Special Needs contributor Lee, shared a suggestion from his family's experience... Family Game Night. So far we opt for movie nights, but I hope we can add this to our repertoire. Lee mentions several benefits that would be really helpful for our kiddos.

That's it! I did also want to take this opportunity to welcome my newest followers. Thanks for joining the journey here at The Simple Life. I'm always working a few kinks out here, so please forgive the cyber-dust if you happen along when I'm mid-renovations. In particular this post should debut my use of intense debate to manage comments. This should allow me to reply directly to commenters, which should be a lot of fun. I enjoy doing this at 5 Minutes for Special Needs. I'm still playing with the look of my banner, too, so if you're back in the next few days and it looks different, it's still me! Feel free to let me know if there are topics you'd like me to write about or if you have other suggestions...very open to input over here. Easter Blessings to you!

Big A, little a...

2011-04-21T01:29:00.000-07:00

What begins with A? The Third Round of Alphabe-Thursday...of course! I'm happy to be playing along again, when a Thursday post arrives on the schedule.

"Look at how good I can do my A's, Mom." She holds up a scrap of paper on which she has written, in sharpie. Using her best handwriting there is a row of Big A's interspersed randomly with a field of little a's, and some strange Accent marks I've never seen before. Are they teaching her Arabic on the side, and in first grade, too?

"I made happy faces next to the good ones and sad faces next to the ones that aren't good enough." I smile a little hesitantly. Do I dare to tell her they are all good enough for me? After all how important is penmanship really these days? We all know that some of our most trained individuals are among those with some of the worst handwriting. Do I tell her how happy I am that she can make her letters at all, to recognize them, to have the desire to try to form them well?

"I think they're all good enough, sweetie. I'm proud of how hard you are working on your handwriting." Assessment is such a routine in our educational system right now. I know there is a huge debate about whether or not it is Appropriate at the level that we use it. Sometimes, I'm sure it is over done.

"I know, Mom, I'm doing really good." I am pleased with how Assured she is. Pleased that she is learning the Art of self-evaluation. Amazed by her Big A's and little a's.

Just a short snippet of everyday life around our house, but a reminder of how I need to weigh my own Actions and Attitudes. Are they good ones? Do they deserve a happy face?

Mean What You Say...

2011-04-18T14:14:00.001-07:00

First, apologies again for disappearing. I have still been making my posts over at 5 Minutes For Special Needs. My two most recent posts there will explain a lot of my disappearance. We had Spring Break the first week of April. I thought I was going to keep up my blogging, but we went to visit my dear Mother-in-Law. It was a harder visit than I had anticipated, and many things I had hoped to accomplish in my spare time were not achieved. When we returned home I thought I would pick up where I had left off, but realized pretty quickly that where I had left off was "Really Way too Far Behind On Everything". I spent last week trying to catch up. I think I have my act together now, but we'll see. There's a lot going on right now, and writing, though wonderfully fulfilling for me, has to fit in the down times, and there have been precious few of those. I was stunned to see how long it had been since I posted. Ah well...jumping back in with both feet...

All it took was a snap. No matter what else was happening, we would hear that snap and come to full attention. My father lead the congregational singing in the church that I grew up in. My mom was often singing in the choir or playing organ or piano. This meant that both of my parents would be on the platform during a good portion of the worship service, leaving my brother and I to sit in the pew alone. The hard wooden pew, with not much besides a church bulletin and a pencil to keep us occupied. Under these conditions it was often hard to keep from pestering each other, or finding some other amusement like dusting the pews with our Sunday best. No matter what distraction we managed to find, when my mom would see us getting out of line she would just snap her fingers. We knew then that she had seen us, and that if we continued in our current activity we would likely be embarrassed in front of God and everyone by her marching down off the platform and removing us for a "talking to" in the restroom. We got the message and straightened up...already knowing that we might get a scolding after church for misbehaving in the first place. We knew that snap, and we paid attention to it.

I don't have a very good snap yet, but I have a different signal with my kids when I really need them to pay attention. I start the countdown. Depending on what is happening I start at different numbers, but when I start counting backward they know that I really mean business, and generally they get moving.

I'm sure you've experienced this scenario:

"Honey, I need you to put your blocks back in their box." [no response...child continues playing]
"Time to clean up the blocks, buddy." [no response...not even a flicker of recognition]

There are two options at this point. Lose your cool, or show them that you know they heard you. This is when I start counting. For a "clean up your toys" situation when it really doesn't matter too much how long it takes them to do it as long as it gets done, I might start at 10. Usually by the time I get to 5 my kids will start acting on my request without me needing to even repeat it. If you really think they didn't hear you (like in a noisy environment or if they are running full tilt on a playground with their best friends) you can precede the countdown with a third request accompanied by full eye contact and gentle physical touch. If I'm in more of a hurry I start the countdown at 5. If it is urgent (like a possible safety concern) or if I sense true defiance I start the countdown at 3. The only time I don't give a countdown is if there is imminent danger, then I just intervene as calmly as possible.

There is a big caveat to this technique. You have to follow through. The first dozen or so times you countdown your child may not think you mean it. Particularly if they are used to you asking them to do something without them responding and then you end up doing it for them. Or if you often tell them to be ready to go in 5 minutes, but then get caught up in conversation with your friend and 20 minutes go by before you're really ready to go. You have to mean what you say. If you don't care enough about it to follow through, then don't even bother to make the request. So now your scenario can look like this:

"Honey, I need you to put your blocks back in their box." [no response...child continues playing]

"Time to clean up the blocks, buddy." [no response...not even a flicker of recognition]
"5...4...3...2...1" [child does not budge]
Go over to the child and touch their shoulder (gently, that's the hard part!)
"Time to clean up, now." Put your hand on their hand and guide them to pick up a block and put it in the box. Repeat as necessary. They may resist. They may argue, but the blocks are getting put away and you have shown them that you really mean it.

You may need to repeat this method many, many times, depending on how strong-willed your child is, and on how long you've let them get away with ignoring your requests. We did more countdowns than the entire history of NASA at our house last year. I still do at least a couple of countdowns daily, mostly with my twins now.

Never do a countdown without following through, and if you're asking your child to do something, always be prepared to do a countdown. It's a snap.

Y is for Yellow

2011-03-31T18:06:00.000-07:00

My daughter knew her colors long before she could talk. "Bring me the yellow ball, Sweetie," and she would go get the yellow ball choosing among perhaps four or six other colors. It wasn't a big surprise to me, then, that when she did start adding words to her vocabulary (well after age 2) that among the first words added were colors, or her version of colors. For a long time she called orange "juice", but this post is not about orange, or juice. Yellow was among the first ten words that she could say. At the time I just thought she was so smart to know her colors already (and she is smart, don't get me wrong) but I had no idea that it was atypical for a child to add adjectives to their vocabulary before nouns. There is a reason that normal speech develops nouns first...

Yellow was clearly one of her favorite colors, too, so we often bought toys and trinkets that were yellow. A yellow ball, a yellow chair, a yellow helicopter, a yellow plane, a yellow plate. Yellow is also one of my husband's favorite colors, so there were already a good number of yellow objects in our home. Our four main rooms are various bright shades of yellow with white trim. If it were a submarine, you could break into a Beatles song here. It's a nice cheery, energizing color, and we all enjoy it.

The only problem was that my daughter started asking for things by saying "yellow" instead of using the names of the objects, since she didn't know those yet, or at least couldn't express them yet. This was a step up from the previous phase in which she would walk around imitating a fire engine siren. "Ah-uh-ah-uh-ah-uh-ah-uh..." meant "I want something." And because she might not indicate by pointing or gesturing what exactly she wanted it was a bit of a guessing game. Our theory is that she heard the sirens going by our house (we live on a fairly busy intersection) and she knew that we always paid attention to the sirens, so she figured that she would make that noise whenever she needed our attention. It worked, but it got old.

"Yellow" got old, too. Which "yellow" did she want? Was it the circle from the shape sorter (one of her favorite security objects) or the ball? The plate perhaps, or maybe the car? If we guessed more than a few objects wrong we were headed into tantrum territory, and there were probably twenty objects to choose from. I became an expert at the guessing game, using who knows what subtle cues and routines to figure out what "yellow" was wanted now. I also stopped adding yellow objects to the collection. Favorite color or no, this was becoming ridiculous.

This guessing game was one of the reasons I decided not to just listen to the doctor who was telling me not to worry, that she would start talking soon enough. "Some kids just talk later." Fine, but when you're seeing frustration because of the communication gap, that's a sign there's something wrong. Without really knowing what I was doing, but by pure grace getting at least pieces of it right I started spending a good chunk of each day trying to help my daughter add words - nouns especially - to her vocabulary. We spent a year in this mode until I went even further beyond the doctor's advice and sought a speech evaluation from our school district.

And so she taught me, early on, to listen to her more than I listened to any expert. She taught me that frustration can be a great motivator, and that there are subtleties to communication that most of the world takes for granted...when the system is challenged we value anew how truly miraculous it all is.

Yellow is still right up there with the child's favorite colors. When most girls her age prefer pink and purple she still often chooses yellow. It always brings back now fond memories of the early days when yellow really meant everything to her.

I am linking this post with Jenny Matlock's Alphabe-Thursday blogfest. Go here to see all of the other creative posts starting with the letter Y. And many thanks to Jenny for hosting.

Sibling Rivalry

2011-03-28T00:46:00.000-07:00

Several weeks ago a regular reader (I do have a few!) asked me to write a post about sibling rivalry. Once again I must emphasize that I am no expert on this subject. I just live with three kids who have the social skills of 3-4 year-olds, two of them due to age and one due to the challenges of living on the autism spectrum. I have some basic observations from this experience and a few "rules" that I follow to handle things in my own home. I thought I would share these and also open the discussion (as always) to hear others' thoughts on this important topic.

First, one key thing that I did not understand about parenting until after I had three children is that the "currency" of childhood is parental attention. The amount of time you spend worrying about, thinking about, planning for or handling your various financial issues will give you a starting point for understanding how your kids feel about your attention. Sibling rivalry is a direct extension of this kid-economy. An only child has a monopoly on parental attention. They have to compete with your vocation and your hobbies, but when the "goods" are handed out they get it all, baby. Siblings must divide the booty, and this is the beginning of the problem.

Second, attention can be distributed in many forms: gifts, praise, conversation, time playing together, and even discipline, to name a few. There are many demands on a parent's time (way to state the obvious!) and while children don't calculate out how to insist on their "time" with mom and dad, they have a real need to gain your attention. If they can't get time playing with you then getting some attention by misbehaving is an acceptable option in their book. It's important to "pay" attention in positive ways in order to prevent negative attention.

Third, there are many demands on a parents time (I said it again!) and you can't interfere with every kid squabble that comes your way. You need to work, clean, cook, sort the mail, read the mail, eat, sleep (once in a while), and a whole long list of other stuff. If you stop every five minutes to get your kids happy with each other and you, you'll not even get through the first step.

Keeping these three observations in mind, what I *_try_* to do around here is the following:

Spend time with your kids one on one. Your kids need to spend time with you individually to get their attention tank filled up. It doesn't have to be much; 5-15 minutes of one on one time with you each day can go a long way toward helping your child feel special. This time needn't be some major affair. Include them in what you are doing (see list above) or get involved in what they are doing. I've been realizing how important the 5-10 minutes I spend at school in the morning with my daughter is right now. She wants to show me little things in the classroom, but mostly she has my undivided attention, and she eats it up.

Spend time with your kids together. Your kids need to spend time with you as a group to practice sharing your attention. This is an excellent opportunity to put skills like taking turns, sharing, and thinking about others. It might not look pretty right away, but as you practice with your kids (you need the practice, too) you will develop systems and strategies that work for your family. We literally take turns and use all of the language associated with that skill when we're playing with all of the kids at the same time. "It's Sissy's turn, and next is Bubba's turn." "Good waiting, now it's your turn." "You can be next." "One more time and then it is Sissy's turn."

Talk about it. I think it is okay to tell your kids that they need to share you. Explain that you want to spend time with all of them, and that you love all of them. Ask how they want to spend their time with you, but make it clear that you belong to everyone.

Give them some words to use. During your play time with your kids you can help them learn some solid ways to avoid and resolve conflict. Skills like taking turns and sharing avoid conflicts. "Using your words" can help resolve and respond to conflicts. When there are problems while you are directly interacting with your kids you can help them resolve things in a positive way by modeling and encouraging positive verbiage. "I'm Sorry" "Can I have a turn?" "I'm not done yet, but you can be next" and "I want to play by myself right now" are all useful tools for a child to have in their conflict resolution toolbox. Hopefully they can transfer those skills to times when you are not involved.

Let them sort things out on their own... to the extent that your children are capable of doing so, and only you can judge this. When our twins were in their first couple of years we closely supervised our oldest daughter at all times with them. As the twins have gotten bigger and more able to defend themselves, our direct supervision has reduced. We are always at least indirectly supervising - keeping an ear out for growing friction. We step in when the conflict is truly beyond the kids' ability to resolve it, but not before. Some amount of conflict and bickering is normal. Interfering with every squabble is not only impossible, but will send your kids the message that they aren't capable of figuring out how to resolve their own problems. Supervise, closely if necessary, to prevent truly aggressive responses, but let the verbal fur fly.

Divide and conquer is not just a military strategy. Sometimes kids really need to play by themselves, but they may not realize it. If you find yourself intervening a lot, it may be time to enforce some separation. Have one kid play in their room and leave the other in the play room/living room/outside. It's important if you do this that neither kid seems to be gaining parent time or attention by the division. In other words try not to put one kid in the room you are in while the other is exiled to their room. The point of this is not to punish one child and reward the other, the goal really is just to give them some time to regroup. It's not a time out, just some time apart. The twins especially need this sort of separation sometimes because they spend so much time together and they seem to think that they always need to be together, but after a brief separation they play together much more nicely.

Sibling relationships are challenging, to be sure. It's important to remember that your job as a parent is not to fix everything, but to help your children learn the skills they need to get along with each other, which is the first step toward getting along with people outside of their family, too.

So what strategies do you use to help your kids learn to get along? I'd love to hear your ideas...

Fragile X Syndrome

2011-03-26T21:18:00.000-07:00

Over the last year or so I've written some short pieces about Fragile X Syndrome, but I've never written a primer about it. It is timely to do so now for a couple of reasons. First, a group of Fragile X advocates - parents, doctors, therapists and researchers - recently completed an annual trip to Washington, D.C. to meet with various congressional leaders to encourage them to increase funding for research into Fragile X Syndrome, and to sponsor legislation to benefit individuals with Fragile X and other special needs. Second, in just a few short days Autism Awareness Month (April) will begin.

Are you aware that for 2-6% of all individuals diagnosed with autism, the Fragile X gene mutation is the cause? That may not sound like much, but it is the largest known, single-gene mutation cause of autism. You can learn more about the distinction between the two disorders and the link between them by reading here. Suffice it to say that anyone diagnosed with autism should be tested for the Fragile X mutation and that any strides toward understanding and treating Fragile X may help us learn more about autism, too.

Fragile X is also the most common inherited form of cognitive disability. It begins as a mutation on a gene (FMR1) found on the X chromosome. This mutation affects the structure of the X-chromosome such that under magnification it actually looks "broken", hence the name of the disorder. The FMR1 gene is responsible for instructing cells how to make the protein FMRP. The role of FMRP is not known, but clearly has some role in brain development. In the simplest scenario, because FMR1 is located on the X-chromosome, Fragile-X is carried by females. Since females have two X-chromosomes one can still generate FMRP if the other bears the FMR1 mutation; they have the mutation, but not the disorder. Males with a fragile X cannot make FMRP and will develop the characteristics of Fragile X Syndrome. However, both males and females can be carriers and both males and females can have Fragile X, so it's complicated.

In addition to behavioral characteristics that are similar to autism (language delays, motor delays, sensory disorder, poor eye contact, etc.) often individuals with Fragile X have some physical characteristics in common (large ears, long face, soft skin, flexible joints, and flat feet). Usually there are cognitive issues ranging from mild learning differences to severe cognitive disabilities.

To learn more about Fragile X, I recommend starting at the National Fragile X Foundation website. In particular, this video, which I have linked to before is very powerful.

Movie Review - Loving Lamposts

2011-03-23T13:46:00.001-07:00

First, my apologies for disappearing for a week. Last week was supposed to be my "light" blogging schedule, but not quite THAT light. We had an urgent accounting project dropped on us, which basically left me thankful that our family has our own issues and not another person's. Maybe God really does give us just what we can handle.

Meanwhile, I'm resurfacing just in time to hit the review post with a documentary called Loving Lampposts - Living Autistic by Todd Drezner. The title refers to Drezner's son's obsession with lampposts. There is a park near their home with old-fashioned looking lampposts and the little boy has named four of them and likes to visit them often to give them hugs and whisper sweet endearments. This is a charming characteristic most likely springing from his autism spectrum disorder. His father set about making this film in an effort to cut through many of the controversies surrounding autism, revealing the double meaning of the title. You can imagine the unfolding story as one family's journey, lit by each discovery as they seek to understand and love their son. The film ends up being a thumbnail sketch of the history of this challenging disorder, interspersed with some of the key players and their influence on society's awareness and understanding of autism.

Thirty years ago only 1 in 2,500 children was diagnosed as autistic, today as many as 1 in 110 bear that diagnosis, worldwide. Is this an epidemic? Drezner interviews parents of adult individuals with autism who grew up in the 1950s, back in the day when children with autism were usually diagnosed with schizophrenia. He talks to adults with autism who grew up in the era when autism was equated with being non-verbal, so verbal children with other symptoms of autism were labeled psychotic or neurotic. He talks to medical doctors who take the view that autism is a medical condition related to environmental toxins, and to parents who have used non-traditional biomedical treatments (like chelation, hyperbaric oxygen, and pro-biotics) to "recover" their children. The vaccine debate is aired. The secretin scandal exposed. The question of "functional grades" is considered. I think the only controversy not discussed is whether a person "is autistic" or "has autism."

Though respectful and even handed, the film makes it clear that Drezner does not fall into the camp of people who consider autism to be a disease. Obviously there is some biophysical/biochemical/neurological difference in the brain affected by autism, but Drezner argues that it should not be placed in the same category as cancer, for example, or diabetes, where a physical problem must be made right in order for a person to live and thrive. He comes down squarely against the notion that vaccines have any causal relationship to autism. He is empathetic toward parents who seek out alternative therapies as a means of "doing something" for their children, but in the end his own view that autism is a disorder that must be accepted and understood as a "different way of viewing the world" rings out.

I have previously published my own research into the "recovery movement" and still want to be clear that our personal story does not line up with the medical issues that some other parents of children with autism face. Our daughter has never experienced seizures or severe gastro-intestinal distress (unless she has the flu). She has no known food sensitivities and seems to have been on a slower developmental trajectory since birth or at least very early newborn days. Still it is hard to discount another parent's story, and I still wonder if we all aren't describing two (or even more) disorders with similar symptoms but different underlying causes. The old analogy of blind men describing various pieces of an elephant to each other and arguing about what an elephant is like comes to mind. In this case perhaps each blind man thinks they're describing the same animal, but perhaps instead one is feeling a kangaroo while another is feeling a wallaby. Some pieces are the same, but in the end they are a different beast.

My favorite portions of Loving Lampposts are when we see and hear from various adults with autism. There is an older man who makes beautiful pottery to support himself in an apartment where various individuals assist him in daily tasks and routines. One woman particularly affected me because she prefers to speak through her computer, though at one point in the film she does speak with difficulty. Her computer lets her intellect shine through as she composes quite cogent responses to fairly philosophical questions. Perhaps my favorite is the woman who decided to keep a pet refrigerator. I feel I have a lot to learn from these adults who are able to express what they have learned about themselves and about autism along the way. I know it helps me understand better how my daughter sees the world around her.

This is a compelling film. I did not expect my husband to view it with me, but after standing through several promos of other films marketed by the same studio he eventually sat and watched the entire film. It opened some lines of discussion for us that we had never voiced before. I would recommend that anyone who wants to understand more of the history and controversy swirling around this increasingly common disorder should watch this movie, and soon. Loving Lampposts has been making the circuits of independent film festivals and will be released on DVD on March 29, 2011, just in time for National Autism Awareness Month (April).

Disclaimer: Cinema Libre Studio sent me a promotional copy of Loving Lampposts for review. I received no other compensation, except opened eyes and a warmed heart.

Remembering To Do What We Already Know

2011-03-17T01:44:00.000-07:00

Here's my latest post over at 5 Minutes for Special Needs. I don't always remember to link this up here. I figure people are more likely to find these pages from there than the other way around. This one can be taken from a very practical side (using a visual schedule) but is also a philosophical mindset that I'm trying to apply. If I already know how to help my daughter in many ways, then half of the victory is just remembering to do it, instead of taking the lower barrier approach of losing my temper!

Sunday Digest 29

2011-03-13T00:34:00.000-08:00

I usually try to spread my linky love around a bit, but I have to admit there was lots of really good stuff over at Hopeful Parents since the last digest I wrote, so who am I to deny it...You will see most of the links below are from various contributors there. There are a lot of tough Special Parenting questions addressed there, too. Things like:

Should I even start this journey? (Yes)
At what point do we stop broadcasting our own story in hopes of helping others? (Depends)
How do you tell your kid what's going on with them? (Currently working on this ourselves...)
What do other people think of my kid? (More kindly than you might think in most cases.)
What about church?..read on...

1) Erik Linthorst is our first contribution from Hopeful Parents. You may have heard his story through the film "Autistic-Like: Graham's Story" that he made about his son, their journey from a diagnosis of ASD to SPD, and the treatments they used to help their son. He has made a follow up film which will air on PBS in April. In this post he talks about his decision to make this the last film for the sake of his son's privacy.

2) Tammy at Praying for Parker writes, as one who should know, to the heart of the mother who has been told that the baby she is carrying has Down Syndrome. Tammy wants them to know that their child has a life worth living ahead of them. She says it better than I can, but I believe she is right on.

3) Carrie Wilson Link from Hopeful Parents shares about how the movie about Temple Grandin helped open the conversation with her son about his autism.

4) Spectrummy Mummy also at Hopeful Parents tells the tale of taking her daughter to an optometrist and becoming nervous about her daughter's behavior, worried about what the doctor might think, only to discover that he thought her daughter was amazing...how we twist ourselves in knots sometimes for no good reason.

5) Julie Holmquist (yes Hopeful Parents again) shares her family's experience bringing their son to church. It is stories like this one that made me want to start this blog. The Church needs to get on board and understand the special needs of children with physical, emotional, and neurological differences and their parents. Church should be a place of acceptance, love, respite, and encouragement, not exclusion.

V is for Voice Modulation

2011-03-10T22:33:00.000-08:00

I thought I would try out the Alphabe-Thursday blog hop this week. It is sponsored by Jenny Matlock over at off on my tangent. The idea is to write about something that starts with a given letter. The letter this week is V. I toyed with the idea of writing about "Very" which is one of my daughter's favorite words, but I couldn't remember all the funny ways she uses it. I'm so used to her odd ways of expressing herself that I almost have to write them down to remember them.

Voice modulation came pretty quickly to mind...it is a skill that none of my children have mastered yet, and so we live in a Very noisy household. I keep hoping that one of these days they will get it. We talk about using our inside voices all the time. I try modeling a nice calm tone, but often I have to raise my own volume simply to be heard above the din.

I was probably a bit of a loud child myself. My parents have audio recordings of me singing my little lungs out when I was about five. In the midst of a whole choir of children my voice rings out above the rest, and I doubt I was near any kind of microphone. I still have a good set of pipes. Back in my work days I could stand in the largest lecture hall at University of California, Berkeley - I think it seats 400 or so people - and without a microphone I could make myself heard in the back row. I only did this for brief announcements, but it was easier than switching the lapel mike back and forth with the professor I was working with. It shook a few people up. I do, however, know when I need to be quiet, and, in fact, prefer to be quiet. It is such a lovely sound, quiet is.

So my children have all inherited the good pipes, but haven't quite mastered the quiet part yet. We visit the town library and I cringe as we walk through the adult areas on our way to the children's section. I model whispering and the kids reply, "What, MOM? TALK LOUDER!"

I've been wondering lately if there's anything to do about all of this, or if I just need to keep reminding, modeling, cringing, and waiting.

The reminding gets old. How many ways can you ask a kid (positively) to lower their voice. Inside voice, honey. Let's use voice #2 right now (there's a whole scale running from zero (not talking) to #5 (yelling because the house is on fire)). Softer, please. That's too loud. Oh, you're hurting my ears. If you want to be loud, please go outside! QUIET!!! I've tried them all, repeatedly, daily, times three, and I'm Very tired of them all.

The modeling, as noted above, is sketchy. It's kind of an automatic response to raise your voice if you feel like you're not being heard, and with all three of my kids jabbering away at their maximum volume I often feel like I'm not being heard.

The cringing is nerve-wracking. With my twins I can usually count on people understanding that they are just preschoolers still learning all of the social cues of when to be quiet and when it's okay to be loud. With my oldest I understand that she is also, due to her developmental delays, still learning all of those same social cues, but to a total stranger she must appear plain old rude. Let them hear with grace, Lord.

I guess that leaves the waiting. I am...oh, I am!

Encouraging Reading and Writing

2011-03-07T16:42:00.000-08:00

I love reading. I love writing. I have loved both for so long that I can't remember ever not loving them. I spent many hours during long hot car trips soaking up Nancy Drew and Charlotte's Web, Ramona, and Pippi, and whatever else I could get my hands on. There were days Mom begged us to go outside because my brother and I had settled in to good books and didn't want to put them down. I wrote my first poem when I was five and only struggled a little with writing in college when I had to write papers on books that I didn't really care much about like Thucydides and Ulysses.

I always imagined that my own kids would also love reading and writing, that it would come naturally, and that the simple act of having good books around for them to read would be sufficient. I actually started collecting children's books long before I had children...during my grad school days I signed up for a Dr. Seuss reading club (made up a kid just for fun) so I had a good set of Dr. Seuss, Berenstain Bears, and other easy readers on my shelf already when my oldest daughter was born. Of course I had never particularly imagined having a child with language delays, motor skill delays, or self-regulation issues, all of which have impacted her interest in and aptitude for reading and writing.

I am by no means an expert in early childhood literacy, but I think we've done a few things right in this area. One really key thing is to keep it fun, because if it's not enjoyable then it loses half of the point, in my opinion. Reading and writing require real effort for my daughter, so if she loses the reward of having fun while she's doing it then in the end it is just work - ugh.

Have good reading materials available - I already mentioned our collection of children's books. We keep these and several kid friendly magazines available on low tables and bookshelves at all times. Often this means I'm picking up books, and stacking them again, but if my kids have been looking at books it is worth the extra effort for me.

Visit your library often - We have a great public library with good programs for our kids. There are story times and craft times, and the children's librarian is so friendly and talented with the kids. We go even when there aren't story times because it's free (unless I'm late returning a book) and it gives us somewhere to go. The kids each pick a book and a video to take home. My oldest has been complaining lately that she doesn't get to go as often, so I think we'll head there some on the weekends soon, too.

Read to them - We read a minimum of one story per kid every night before bed. No matter how late it is. No matter what else has happened that day. They pick the story. Now that my oldest is reading a little on her own we ask her to read at least some part of the story - sometimes a page or two, sometimes every other page, sometimes the whole thing depending on her willingness. Remember it's supposed to be fun.

Think outside the book - There are lots of "environmental" texts available to read. We read signs, receipts, mail, shirts, and grocery lists. Likewise we write notes, lists, names, and menus. Just look around - there's a lot to read and write!

Use the computer - My daughter loves Starfall, a phonics-based reading program with games and art activities. Our school also uses Lexia. She also likes getting on the word processing software and writing cards and notes there. Anything that gets her practicing sounding out words and building sentences is open game in my book.

Be a good example - This is one area that I have no problem modeling for my daughter. I still love a good book, when I have time to read them. It's important to show that reading is not just work, that it can be a fun activity, too.

What ideas do you have for making reading and writing fun?

Speech and Language Delays

2011-03-05T00:53:00.000-08:00

Language delays are defined as any communication skill development that lags behind children of the same age by more than a year. This is the most common developmental disorder in children, affecting up to 10% of children. It is more common in boys than in girls.There are several possible underlying causes of language delays including:

hearing impairment
dyslexia
cognitive delays
maturation delay
cerebral palsy
autism
congenital blindness
Klinefelter syndrome
receptive aphasia
expressive aphasia
apraxia (loss of coordinated movement without motor or sensory impairment)

In some cases environmental situations that limit verbal interactions with adults or peers can also contribute to language delays. Maturation delay refers to "late talkers" who often catch up with their peers before starting school - this often runs in families.

Although there is wide variation in when children begin to communicate, the rate of language development, and the pattern of speech development, there are some key language development milestones to keep in mind. In my experience being aware of any delays or differences in your child's communication between the ages of 6 months-3 years is critical. At 3 years of age you can request a speech assessment through your local public school district and any issues can then be addressed with Early Intervention services. If there are significant challenges before age 3, you can ask your pediatrician for a referral to a developmental specialist. If your pediatrician assures you that children develop at different rates, but you are still concerned, you can continue to request a referral. Explain your concerns in more detail if necessary. Specific delays to be concerned about include: not babbling by 12 months, not understanding single commands at 1.5 years, not talking by 2 years, not using sentences by 3 years, not telling a story by 4-5 years. The challenges may also include an inability to follow directions, slow or garbled speech after age 3, difficulty putting words in the correct order (syntax), or problems with articulation (phonology).

One key issue to be aware of is the difference between receptive language and expressive language. Receptive language refers to a child's ability to understand and process the words spoken by people around them. Expressive language refers to a child's ability to initiate communication by requesting something or commenting on events around them. In normal development expressive language lags behind receptive language, thus your child should be able to understand and comply with simple one step commands (e.g. get your shoe) before they can vocalize a sentence of similar length (e.g. that's my shoe). If both domains are apparently delayed and if no hearing impairment is present a full developmental assessment should be requested.

About 60% of language delays resolve on their own. Early intervention can prevent related social, behavioral, and emotional issues. Left untreated language delays may lead to selective mutism, where social anxiety hinders a child's ability to talk with peers, large groups, and unfamiliar adults. There is no known way to prevent language delays.

After a language delay has been diagnosed there may be several professionals involved in various therapies to encourage language development. The team will certainly include a speech and language pathologist (SLP), and may also include an audiologist, a psychologist, an occupational therapist (OT), and/or a social worker. Parents can play a key role in encouraging language development in their child. In addition to initiating assessments and informing the team of professionals of your child's unique abilities, preferences, and challenges, you can help make your home a language rich environment. We were fortunate to learn about the Hanen Program fairly early in the process of understanding our daughter's delays. We attended a Hanen Workshop where we learned to modify our activities and our language to encourage richer language experiences for our daughter, before we even understood that her language delays were the result of an autism spectrum disorder. We also used their It Takes Two to Talk workbook to find games and stories that encouraged conversation.

To learn more about speech and language delays, you can get started here:

Answers.com language delay - be aware this is written in a very clinical style which may be disturbing to some parents.
American Academy of Pediatrics - I particularly like the way this page relates language delays to autism. Their list of "warning signs" of autism is more comprehensive than others I've seen, and the discussion of receptive and expressive language delays toward to bottom of the page is particularly enlightening.

Book Review - Special People Special Ways

2011-03-02T00:54:00.000-08:00

We are beginning the adventure of explaining to our daughter what her challenges are, where they come from, and how she can use her strengths to overcome them. It's an adventure that we knew would come one day, and one that we have started as some of her peers have started to notice and comment on her differences. We want her to be able to explain it to others and hopefully become her own best advocate. Eventually her siblings will need to understand why their Sissy is different, too. I've been looking around for resources and came across this book one day at our local library. We have been advised by trusted resources that the first step of the journey is to begin to recognize and comment on "differences" in people in everything from hair color to physical abilities. Each day I try to point out one way that people are different from each other. One day it was how people get to school. We want to make "differences" be normal. This book coincided nicely with that goal.

Special People Special Ways is written in rhyme, which makes it a catchy read for language learners. Every page has sweet illustrations of children with different abilities and ethnic backgrounds. Of course in the illustrations as in the real world the most obvious "differences" are physical - a wheelchair, a white cane, a guide dog (or monkey!), or crutches. Still the text addresses children with communication challenges, learning challenges, and more subtle differences. The overall message of the book is that each child is unique, each child is valuable, and each child needs help in different ways. Everyone is important and loved. We read the book with all of our children and enjoyed interacting with them around these characters. It is targeted toward a young audience, I would say ages 4-7. It does not address any deeper questions about the various challenges these children face.

I think this is a beautiful introduction to the diverse needs of people all around us. I was sad to have to return it to the library and will probably seek it out again as we approach the next phase of the adventure. Stay tuned.

Eager

2011-02-25T07:38:00.000-08:00

A wife of noble character who can find? She is worth far more than rubies. Her husband has full confidence in her and lacks nothing of value. She brings him good, not harm, all the days of her life. She selects wool and flax and works with eager hands. (Proverbs 31:10-13, NIV)

Continuing our look at the Proverbs 31 woman, the next adjective that describes who she IS connects her character with what she does (which is sometimes what we focus on instead.) She is eager. In verse 13 her eagerness is connected with selecting wool and flax and working with them. We're pretty familiar with wool - collected from sheep and spun into yarn or thread to make clothing. Flax is a type of plant, and it's fibers can also be used to make thread that is used to make linen. We'll see later in this passage (verses 19-24) that this woman makes thread, and uses the thread to make fabric, and uses the fabric to make clothing both for her family and as a business to sell linens to the shipping merchants. This is HER WORK. I can't remember the last time I made thread from wool or flax...actually I never have, though I have seen a spinning wheel in action and have friends that do some weaving. I've tried doing a little sewing (though I'm not brave enough to make any clothing yet) but generally just purchase what we need off the shelves of local retailers. The point is that she meets her work with eager hands. What is my work, and am I eager about it?

Eager is not a word we throw around these days, so I spent some time looking it up and considering what it means. According to the World English Dictionary eager means:

impatiently desirous (of), anxious or avid (for)
characterized by great desire or expectancy
feeling great desire or expectancy

The word eager in the NIV (willingly, KJV) is translated from the original Hebrew chephets (khay'-fets), which means pleasure, desire, a valuable thing and is derived from chaphets (khaw-fates'), to incline to. She takes pleasure in her work. She desires to do it. It is something she values. Given a choice she is inclined to work.

I have several different kinds of work: childcare, cooking, housework, office work, writing, and volunteering. Some of them I am eager about: cooking and writing, for example. Others I would rather disregard and go read a good book...housework probably falls in that category. Nonetheless I know that all of my work is valuable and necessary. I think I'll be looking for ways to make my work desirable, and something that I look forward to with expectancy. Perhaps if I ask God, He can show me how to be eager about it. I also think I'll be even more grateful for the work that is already pleasurable. How good that God planned for work to not be drudgery, but enjoyable.

Sunday Digest 28

2011-02-20T14:25:00.000-08:00

So much to share this time that it's going to be hard to choose. I'll try to spread the linky love around...

1) This post from Reports from a Resident Alien helped me understand the difference between emotional self-regulation and being mature. I love getting this woman's insights because she lives with autism and although autism is different for each individual there is a lot that can be understood in general terms from one person's experience. This post was particularly helpful for learning skills to cope with and manage emotional outbursts in a mature way...skills that I'll need to be sure my daughter develops.

2) The instinctive drowning response is a powerful analogy to describe the situation that families with special needs children sometimes find themselves in. We were there (briefly) and fortunately found the support we needed to get back on track. Now I see other families there and wonder how I can help without risking our own equilibrium. According to this post at Hopeful Parents the first step is to get into the pool.

3) Praying for Parker now has a sponsor that is making beautiful embroidered letters which can be used for tactile learning, early writing, phonics, etc. If you have access to an embroidery machine you can buy the pattern for the letters for $15 and help pay Parker's medical bills. Sweet!

4) Laura Shumaker recently had a post that highlighted the Transition Planning Kit recently launched by Autism Speaks. The kit helps families who are preparing their adolescent children to be adults, a key phase in finding support, resources, and information for more independent living.

5) Bird on the Street wrote this powerful piece describing the day she and her husband were faced with a life and death decision for their son, Charlie. They had to listen to their own instinct and overcome the naysaying of experts to choose time, information, love and life. Amazing.

Fret Not

2011-02-17T14:54:00.000-08:00

My daughter worries about many things that I do not, but there is one area where she is by far less fretful than I am. When it comes to making decisions she has no hesitations. She chooses, she is happy, and she moves on. I tend to weigh every option, consider every feature. Choose, then compare some more, test my psyche to see if I am just "settling", then make a decision, and usually walk away still wondering if I've chosen well. This shows up especially when we are shopping together.

"Which one would you like, sweetie?"
"Oh, this one, Mom!"
"Did you see this over here?"
"Oh, but I want this one, Mom..."

versus:
"Mom, can we go now?"
"I'm looking to see if there's anything I like better."
"But you already put that one in the cart."
"I know, I'm just looking..."

I've never thought of myself as much of a "shopper". I like to go in with a list, get the best thing I can find and get out, but compared to her I am shop-crazy. It's the "get the best thing I can" part that I'm hung up on. What if I miss out on a better deal or some new-and-improved product because I just grab the first suitable thing I see.

I'm not saying it would always be wise to follow my daughter's method. Some decisions must be carefully weighed. There are choices that require careful consideration and thoughtful reflection. There are other choices, however, that should be quite straightforward that I fret over instead. I suppose one characteristic of wisdom is being able to discern whether the decision you are facing is so critical or not. Really how many critical decisions do most of us make during a day...my guess is not many.

Spread the Love

2011-02-14T21:49:00.000-08:00

It is Valentine's Day (at least for another 15 minutes here on the West Coast) and although I know there are those who discount the day as a "Hallmark" created holiday, who can argue with a day to really set aside some time to let the special people in our lives know that we love them? It's pretty easy to avoid the commercialism and just focus on the love. These are some things our family did this year...

Love God. It's a command, the Shema, which devoted Jews still give special honor to in their homes. It is the fundamental Love that makes all other love possible:

Hear, O Israel: The LORD our God, the LORD is one. Love the LORD your God with all your heart and with all your soul and with all your strength. These commandments that I give you today are to be upon your hearts. Impress them on your children. Talk about them when you sit at home and when you walk along the road, when you lie down and when you get up. Tie them as symbols on your hands and bind them on your foreheads. Write them on the doorframes of your houses and on your gates. Deuteronomy 6:4-9 (NIV, emphasis mine)

There are so many ways to express love to God, but I think one of the most important things commanded in this verse is to make your faith in God evident to your children. Our faith is not simply something that drives us to church on Sunday, it should be so ingrained in our actions, words, thoughts, and motives that our children see it and experience it every day in tangible ways.

Love your helpmate. I wrote a post a while back about how I try to do this. Today my husband and I got creative and instead of going out for dinner we went out for brunch. It happened that his work schedule and my volunteering allowed us an hour this morning to visit a new-ish local cafe and enjoy some one-on-one time without having to pay a babysitter since the kids were all at school or preschool. These times are so rare for us that it almost doesn't matter what we talk about, it helps us refocus and reunite our efforts as a couple to be supportive and have a common vision. Thinking just a little outside the box made it possible today.

Love yourself. I suppose the debate will always rage whether there is truly a command to love yourself...but for any parent, and especially those of us who parent a child with special needs, it doesn't matter if it's a commandment - it's a necessity, and one that we often postpone or neglect altogether. I wrote a post about this, too. I've been spending more energy on myself lately, and trying to find ways to do it that don't take extra time away from my children and other duties. I am walking more (one side benefit of moving back to our neighborhood schools), taking time for a shower more often (though not perhaps as often as I'd like), and trying to make sure that I'm drinking lots of fluids if not water. These are small things, but they're making a difference for me - boosting my energy level and keeping me healthier for the long haul.

Love your children. Today I made valentine's cards for my husband and for each of my kids. It didn't take very much time, but I hope it will be a long-standing tradition and one that will eventually mean a lot to my children. I'm not a super-gushy-snuggly-mom type. I try to tell and show my kids every day that I love them. These cards are just a tangible reminder of my love. I took especial care with my oldest daughter's card. I made a heart surrounded by a rainbow, a new obsession of hers. I wrote:

I love how hard you work to learn and to help. I love how you love rainbows. I am so proud of you! Most of all I love you because you are you!

I tried to use simple language and my best handwriting so that she could read it all herself (a skill she is becoming increasingly confident in) and I hope the words will go deep into her sense of self-worth.

Love others. As part of a service project in Sunday School we decided to make Valentine's cards for some residents in an assisted living community not far from our church. We spent time each Sunday during Sunday School making cards, but also brought some home and worked on them during spare moments - while watching TV or waiting for dinner to get ready. With help from friends we made 80 valentines and delivered them Sunday after church. The staff was going to hand them out today. I'm sure many of the residents won't get many other valentines, and I hope the small gesture will remind them that people care and more importantly that God cares.

How will you spread the love this year?

Lennox Gastaut Syndrome

2011-02-12T22:01:00.000-08:00

I have to admit I had a hard time putting this post together. This sounds like a particularly complicated and devastating disorder - one that saps vitality from children who may otherwise seem healthy and whole. I start most of these posts from very little personal knowledge, so they require a fair amount of research. I need to be as accurate as possible without copying verbatim from the resources I've looked at, and I try to be sensitive to parents, caregivers and individuals who may be affected by the conditions I'm learning about. All of that put together meant this post was tough and therefore late, but I hope will still be interesting and useful to you.

I had never heard of Lennox Gastaut Syndrome (LGS) until I saw another special needs parent's post about her child on a discussion board I belong to. As usual I was curious to know what is involved with this condition, and started my research. There is a lot to learn. LGS is a form of pediatric-onset epilepsy that can be quite severe. Fortunately it is fairly rare, occurring in 1-4% of pediatric epilepsy patients. One devastating effect of this disorder is that it usually begins between the ages of 2-6 years and the child may be typically developing prior to having their first seizure. With each seizure the child may regress, gradually losing skills. Even cognitive function may be affected. LGS generally causes various types of seizures (the seizure type may change as the child gets older) and often the seizures cannot be controlled with medication.

Besides the obvious impact of epileptic seizures, individuals with LGS often exhibit behavioral challenges, personality disturbances, mood swings, poor social skills, attention seeking behavior, and challenges understanding information. These changes may be brought on as side-effects of the seizures or of the medications used to control seizures.

Sometimes there is no known root cause of LGS, but often there is evidence of brain injury due to lack of oxygen during pregnancy or birth, an infection (like meningitis), or congenital brain malformation.

Because LGS seizures are often not controlled by medications, alternative treatments are often used. Among these treatment options are:

ketogenic diet - a high fat, low carbohydrate diet used to force the body to burn more fat than sugar. The diet is known to help reduce seizure rates in children with some forms of epilepsy. There is a modified Atkins diet being studied for use in adults.
vagus nerve stimulation therapy - this involves implanting a device under the arm or in the chest that sends electrical impulses to the vagus nerve, which in turn helps the brain regulate electrical signals to help control seizures. The device can be activated with a magnet to prevent or control a seizure during the event. This sounds to me like a pacemaker for the brain.
surgery - there are several surgical options, but these are considered as a last resort, usually, and will only be attempted if critical brain functions will not be affected.

There are some things you can do to help advocate for individuals with LGS and other forms of epilepsy.

Learn more and help spread the word. There is a wealth of information available at the LGS Foundation.
The LGS Foundation accepts donations to help fund research and to help support families affected by LGS.
The 5th Annual Walk for Epilepsy will be held on March 27, 2011 in Washington, D.C. Click here for more details.
Even if you can't make it to Washington D.C. on March 26 (the day before the walk), consider wearing purple and if someone asks you why tell them it is to raise awareness for epilepsy.

For more information check out these sites:

Book Review - Whole Body Listening Larry at Home!

2011-02-09T02:00:00.000-08:00

I have some pretty cool friends. The other day one of my cool friends gave our family this book. I think it will be good for our whole family. If there is one thing I get most frustrated about with my kids it is that they "don't listen" to me. Sometimes, I have to admit, I'm the one who is not listening. This sweet book talks about how to use every part of your body (not just your eardrums) to listen. It turns out that your eyes, your mouth, body (torso), hands, feet, brain and heart are all involved in truly listening to another person. While my kids are often not listening with their mouths, hands, and feet (generally at least one of them is making noise with at least one of these) I am more likely to be not listening with my brain (multi-tasking) or with my heart (ouch!) This simple story walks through the parts one at a time with socially savvy Larry helping his sister, Lucy, learn how leaving out any of the parts leaves other people (parents, siblings and peers) feeling frustrated and unloved. There are several things about this book that I love:

The text is simple and presented in rhyme to add interest. In addition to narration that makes the key points, the characters words and thoughts are often presented in speech and thought bubbles. The thought bubbles are especially useful for helping children understand what the characters are feeling.
The facial expressions of the characters are also very clear and will add to opportunities to discuss how each character is feeling when Lucy is not listening.
Toward the end of the story there is a cartoon list of each body part so you can talk about what it means to listen with your eyes (looking at the person who is talking) or with your feet (sitting or standing quietly).
The book shows Lucy being successful in the end and how everyone feels when she is listening - So Good!
At the end of the book there is a list of suggested activities to supplement the story, and two visuals that can be used in the activities.

Whole Body Listening Larry is published by Think Social Publishing and is based on principles developed by Michelle G. Winner in her work on Social Thinking. I have met one of the authors, Elizabeth Sautter, as she is the co-director of a program my daughter attended last Summer for social skills support. I recognized many of the concepts in the book from similar concepts presented in the social skills curriculum, so I know it will connect with my daughter, too.

Soon they'll be releasing "Whole Body Listening Larry at School!" which will be a great tool for teachers!

Sweet Memories

2011-02-04T15:27:00.000-08:00

I made a cake yesterday that carries a lot of nostalgia with it - cherry chocolate cake with chocolate glaze. If memory serves, my mom learned to make it from our "artificial" grandma, a dear friend who often stood in for our biological grandparents who lived far away. Just remembering her makes the cake a little sweeter. It was a cake that my mom made fairly often, and one that my brother and I both requested for our birthdays. It is still one of my brother's favorite cakes. I was looking for a sheet cake to take to our weekly Bible study last night and came across a similar recipe in my cake book. I couldn't resist making it. All of the memories bound up in that recipe - I didn't even consider a different cake.

I made the cake while my daughter was at school, but still needed to frost it when I went to pick her up from school. This was putting some time pressure on me because the glaze needs to be poured hot on top of the warm cake for it all to turn out just right. There is always transition time when I pick my daughter up from school. She needs time to switch from school mode to home mode; teacher interaction to mommy interaction. Sometimes she wants to play on the playground. Sometimes she wants to show me something in her classroom. I've learned not to rush her because it just makes the transition harder, but there are times, like yesterday, when the transition time doesn't line up well with my agenda. My agenda has to be shoved aside. Yesterday we needed time to look at the newest class pets - two cute little mice (yes, Mom - mice!) and look at a couple of projects my daughter was so proud of. Toward the beginning I told my daughter that we would need to go straight home after we looked at the mice because I was in the middle of making a cake. She likes cake and I think this motivated her to make the transition shorter and more easily than if my agenda was something she totally wasn't interested in...like vegetables or something.

As we were walking home she wanted to know more about this cake. What kind was it? Why did I want to make that cake? I tried to explain to her how it reminded me of my family and good memories, and although she later repeated this information verbatim to her father and our Bible study friends, I don't think she ever understood why this was an important reason to make this cake. I'm kind of fascinated by her reaction. For one thing, my daughter has an excellent long term memory. As often occurs with individuals affected by autism, she can remember details and events that I have long forgotten about. She remembers (and has asked me to go buy) a toy that she saw in a toy store when she was three years old (she is now seven.) We went there once, and she remembers this toy. She remembers children from Kindergarten and preschool that we haven't seen for months or years. She remembers their names and where they live, and probably anything else they told her. I have to be careful what I say around her because chances are she will remember it and may say it to the wrong person at the wrong time. There is no lack of memory skill in her disregard for nostalgia. I think she probably even experiences nostalgia at some level. She chose certain events and details of her birthday party because "that's what we did last year" and evidently she remembered it fondly...or is that just her love of routine coming into play...or is there a deeper connection between "routine" and "nostalgia." Still, she couldn't make the connection between memories, good feelings surrounding those memories, and how those feelings might direct one's decisions. Or perhaps she just couldn't empathize with my process.

All of this goes to remind me how important good memories are and how we should try to hold onto them and celebrate them whenever we can. I certainly want to build good memories into my children's lives. Will they remember cherry chocolate cake and choose to make it for their kids some day? I hope so.

By the way, that cake was JUST as good as the way I remember it. There are not very many things one remembers from childhood that one can say that about. I was also relieved that after all my raving about this cake my daughter liked it to and asked for a second piece. I thought I'd include the recipe here, in case you want to try and make some sweet memories yourself...enjoy!

Cherry Chocolate Cake with Chocolate Glaze

Cake

Chocolate or Devil's Food cake mix (with or without pudding in the mix)
2 eggs
1 teaspoon almond extract
1 can of cherry pie filling

Preheat oven to 350 degrees. Mix all of the ingredients together using an electric mixer until well combined (2-3 minutes.) [If you want large pieces of cherry in your cake then combine the first three ingredients first and fold in the pie filling afterward.] Grease a 9x13 sheet cake pan. Pour the batter into the prepared pan. Bake 30-35 minutes or until a toothpick inserted in the center comes out clean.

Glaze

1 cup sugar
1/3 cup butter
1/3 cup milk
1 cup semi-sweet chocolate chips

While cake is cooling slightly, mix sugar, butter, and milk together in a saucepan. Stir constantly. Bring to a boil and keep boiling for 1 minute. Remove from heat and add chocolate chips with stirring. When all chips have melted pour the warm glaze over the still warm cake to completely cover the cake. Don't forget to lick the spoon!

Sunday Digest 27

2011-01-30T20:21:00.000-08:00

It's been a while since I've written a digest. Between taking some time off over New Year's and rearranging my writing schedule a bit it just hasn't fallen into the rotation, but here we are...the first Sunday Digest of 2011. Given the gap I should have plenty of material to choose from.

1) I wanted to start off with a moving video posted by our new friend, Justin Buzzard. We met Justin because he has spoken several times at our church while we are seeking a new pastor. Justin is an excellent preacher, and is starting a church in the San Jose area...in case you're looking. He is also the uncle of Brody, who is affected by autism. Brody's parents took some photos of him at a recent beach outing and overlaid "10 Things Every Child with Autism Wants You to Know..." If you've been looking for a good way to pass this information on to someone, well here it is.

2) Here the inimitable Varda explains why we need to keep telling people how to understand and help our children reach their full potential, regardless of what their challenges and needs might be. It wasn't that long ago that children with special needs were sent off to institutions without question, or worse.

3) Ever have one of those moments when your temper gets the best of you and you can't seem to get a grip on your anger? Please don't tell me I'm the only one...My fellow 5 Minutes for Special Needs contributor, Laurie, shared some of the secrets she's learned over the years to get a grip on her anger. Fake swearing...love it!

4) I've been attending some IEP meetings with a friend. Perhaps that's one reason this piece, sort of retrospectively viewing the IEP track of education over the long haul jumped out at me. The analogy at the end is powerful.

5) Last but not least, we've been encountering lots of situations lately where I wish I knew better how to support my daughter's social skills. Hartley shared some of the things she's learned here. I definitely need to try a couple of these to see if they will help in our scenarios.

Noble and Precious

2011-01-27T12:15:00.000-08:00

So I'm jumping into my look at the inner qualities of the Proverbs 31 woman. As I already mentioned, she is often upheld as the "super-type" role model for Christian women. Reading through the list of all that she DOES could cause one to throw up one's hands in despair and crawl back into bed. I'm not sure that's why God put her in the Bible though. Somehow I think we're supposed to look at her character - who she IS - and to strive to BE rather than to DO. This is a lesson God has been impressing on me for quite a while, and it's taking a long time for it to get into my skull...and perhaps even longer to get into my heart.

To find out who this woman is I thought we could look at the adjectives that the author uses to describe her. The passage begins:

A wife of noble character who can find? She is worth far more than rubies.
Proverbs 31:10 (NIV) (emphasis mine)

Already we are seeing some special things about this woman. She is noble and she is worth a lot (which I will refer to as precious.)

In the original Hebrew, the word noble (New International Version, NIV) is translated from chayil (khah'-yil) which refers to a force (of means, men or other resources) producing virtue, valor, and strength. The word is derived from chuwl (khool) or chiyl (kheel) a primary root that means to twist or whirl, to dance, to writhe in pain or fear, to wait, and to make to bring forth. The King James Version (KJV) translates chayil as virtuous. The English Standard Version (ESV) says excellent. In other words this woman possesses an internal force (from some resource) that causes her to bring forth virtue (goodness), valor (courage), and strength. Boaz uses chayil to describe Ruth when she rendezvous with him to ask him to "redeem" her (Ruth 3:11). Ruth's chayil is probably what helped her stand by her mother-in-law even when it meant leaving her own family and being reduced to the status of a beggar-woman. The result of her chayil is that she became the great-grandmother of King David, and one of a handful of women listed in the genealogy of Jesus. As a Christian this chayil need not come from my own resources...I can rely on the indwelling of the Holy Spirit. There's no great virtue in anything I try to do apart from Him, actually. (Isaiah 64:6)

I was particularly struck by the reference to this woman's worth as exceeding rubies. Why not gold or diamonds? Is there something about rubies that makes this reference most apt? So I did a little research and found out that "rubies are the scarcest of all gemstones and command extremely high prices." (So ladies if your husband or significant other offers you a ruby don't pout at him that you wanted a diamond...) The author is telling us that this woman is so precious she is more costly than the rarest of jewels. It also appears that this analogy refers us back to earlier sayings in Proverbs where wisdom is considered more precious than rubies (see Proverbs 3:15 and 8:11). As such this woman personifies wisdom. Also note that the value of the woman comes from how scarce she is and yet is assigned to her by her husband (and only him), not by herself.

In all of this we can be encouraged because our virtue and our value are not dependent on ourselves. It is not our own work, but the work of Christ that makes us noble. It is not up to us to be precious on our own, rather as the Bride of Christ He has made us precious, more precious than rubies.

Link 5 Minutes Post

2011-01-26T15:18:00.000-08:00

I thought I should start posting a link to my 5 Minutes for Special Needs posts here, mostly for completeness sake. I know some other bloggers do this, too. It gives me some chance to comment more editorially on those posts. This one was hard to write, for some reason. I felt disjointed even while I was writing it, but the overall question seems important to explore. In this "information" age, how much is too much to share about ourselves, our experiences, and our encounters with others. What do you think?

Getting Into the Word

2011-01-24T02:27:00.000-08:00

I can't be the only Christian mom out there who struggles to find time for reading the Bible. Honestly this is not just an effect of motherhood...I have always struggled with the "discipline" of daily Bible reading. It's not that I don't understand the importance or agree with the concept:

Every relationship needs two way communication...our experience with autism does nothing but highlight this fact. One of the most devastating aspects of autism is how communication is impacted, particularly for individuals who remain non-verbal, but even among the verbal the subtleties of conversation like sarcasm and figures of speech can be sadly inaccessible...but I digress.

Prayer is a whole different post, but that's how we tell God what is on our mind. My prayer life has also become a lot more pragmatic these days...my most frequent prayer is, "What do I do now, God?" followed quickly by, "HELP!" with "Wow, thanks!" a close third. Hearing from God can come in several ways, but reading the Bible is one obvious way He can lead us and answer our questions and needs.

Mostly I'm just busy. I always have been and always will be. I'm busier now that I ever have been in my life. There have been seasons when I've been able to consistently wedge Bible reading into my routine for weeks and months at a time. Usually some "crisis" will occur that gets me off track. The longer I go without the easier it is to justify. Just trying to be brutally honest here.

There are all sorts of Bible reading programs out there. Read through the Bible in a year, two years, three years. I tried the last of these starting last year and hung in there until February, then fell hopelessly behind and gave up. This year I ran across "the Bible reading program for slackers and shirkers" which sounded good, but also (oddly) seemed like a lot of work - which day is it, what am I reading again?, where did I leave off? So here's what I'm doing now. I'm leaving my Bible OPEN. When I first read this I thought it was kind of impractical. Around here paper (and we have a lot) is considered fair game for scribbling by two members of our household. Any writing implement will do - sharpie on onion skin anyone??? However, I did find a shelf that is out of reach of the ~~imps~~, uh preschoolers, yet is still in my eyesight every day. There's a small shelf in my closet right above my dresser. Every day when I'm getting dressed (even if it's just jeans and a t-shirt) I see my Bible sitting there OPEN. Just inviting me to take a gander. Most days I manage to pick it up and read a few verses. Even if I re-read a bit, it's easy to read a little further until I know I've hit something new. Right now I'm making my way through Proverbs 31. Just a few verses, but God has been meeting me there.

Psalm 37:4

Hebrews 11:6

Another idea that I'm working on also relies on daily visual contact. I'm finally getting around to framing some inspirational thoughts from a ladies retreat I attended last May (told you I'm busy)...one of the activities at the retreat was making our own recycled paper. I'm putting one quote and one Bible verse reference on each paper and framing them. Now I just need to find a good spot to hang them and each day I'll be reminded of these key verses.

Some other ideas that can keep you reading often, if not every day:

Attend church regularly - sermons are God's way of making a certain verse, story, or book jump out at you.
Find a good Bible study - we have a weekly Bible study with a few other people from our church. We're studying a harmony of the gospels. I don't generally get to my homework, but we read some verses while we're at the study, and it is another opportunity for God to highlight His word for me. There are some groups like Community Bible Study that include childrens' programs.
Listen instead - I haven't tried this one, but I have friends that listen to the Bible on CD or mp3s each day.
E-mailed readings/devotionals - You can also sign up on-line and have devotionals e-mailed to you or added to your reader of choice.

What do you do to keep reading?

Dysgraphia

2011-01-22T21:57:00.000-08:00

I thought I'd finish out the set by posting some basic information about dysgraphia. Dyslexia is a learning challenge in the realm of reading and understanding written materials, dyscalculia affects an individual's ability to understand and perform mathematics and other skills involving numbers. An individual affected by dysgraphia has difficulty with writing tasks - from the motor skills used to handle a writing implement to the process of putting thoughts down on paper in written form. Because writing is a skill that develops in a continuum from early childhood (preschool) through adolescence and into adulthood, different challenges may arise at different times.

Some warning signs of dysgraphia include:

ineffective pencil grip and poor writing posture
poor penmanship
fatigue during writing tasks
finding ways to avoid writing
saying words aloud during writing tasks
incomplete sentences or missing words
trouble putting ideas onto paper
problems with sentence structure, common usage and grammar
significant differences between written work and ideas expressed through other means such as oral or practical skill.

Parents and school staff should work together with the student to determine an appropriate combination of support and accommodation to best meet the student's needs. In some cases written tasks can be performed through other means such as speaking or using a computer instead of handwriting. Assignments can be modified to reduce reliance on written skills. However, because handwriting is an important facet of everyday life, remediation and coping skills should also be used to strengthen writing abilities.

This website has a variety of suggestions for different developmental levels to encourage writing skill improvement.

One particular idea that I wanted to emphasize is the introduction of computers early in a child's schooling. There is a lot of advice out there about limiting screen time and reducing childrens' exposure to technology in order to encourage more physical activity. I want to emphasize that "computing" should be done in moderation. However, I do feel it is important to begin familiarizing children with computers, keyboards and mouses (mice?) earlier rather than later. Our daughter is in first grade and her class spends about an hour each week in her school's computer lab. I have observed a couple of short sessions in the computer lab during my regular volunteering time. The students use the keyboard to log in to various software programs. They use a combination of point-and-click mouse skills and keyboard strokes to drive the software. If they are not familiar with the keyboard and mouse they lose learning time, and have trouble completing their tasks. I was relieved that our daughter has learned these skills. In fact we have a little competition going sometimes as to who spends more time at my desktop computer. Fortunately I can always access my laptop! As technology increases I imagine that computer skills will become even more essential to daily life, though I'm not sure that handwriting will ever completely disappear.

For more information on dysgraphia, you can start here.

Book Review - Parenting with Love and Logic

2011-01-19T01:44:00.000-08:00

It is hard reviewing parenting classics. Last time I tried this I could not give a glowing review. This time around I'm a little more positive. I had heard a lot about "Love and Logic" parenting, but I had never read the book, so when I saw this goodie sitting in our preschool's parent library I snatched it up. It turns out that I do a lot of their recommendations already: giving children limited choices to help them learn to think for themselves, setting limits, and sometimes allowing for natural consequences. What I am perhaps missing is the calm finesse the authors characterize as "consultant parenting." I tend more toward their "drill sergeant" mode, so I've been working on that with some success. One key point that I've taken away and that seems to be helping the general flow of life around here is that I should not allow my kids' problems to be my problems, unless they are truly too big for the child to handle on their own. Lately when the twins come with their latest "tattle tale report" instead of dropping everything to go sort out the situation I say, "Did you use your words? Tell them you don't like that," and I offer a kiss to help them find their nice strong voice. Unless there is a safety issue in question this keeps me out of the fray and lets them learn to handle hard situations, which they will eventually need to do on their own anyway. Wouldn't you like your child to be able to say,"I don't like that!" when another child is picking on them? There are a few things I really liked about this book:

First, they present their overall philosophy and then they provide a ton of real life situations (48) where their principles can be applied. Everything from pacifiers to internet use is covered at least briefly. It helps you see that this is not pie in the sky parenting advice, but really can work in a variety of situations. One of those 48 suggestions covers when to get professional help. I wish I had read that page about four years ago. It might have saved us a few months of heartache.
Second, their view of spanking is not that it is "wrong" per se, but that it is ineffective compared with other techniques they say leave children "wishing for a spanking." Considering that some of the natural consequences they suggest include the child paying for their own babysitter...um, yeah. Around here that could bankrupt a kid pretty fast. This is much more in line with my current thinking on this hot button topic. We avoid spankings almost entirely around here and have replaced them with several more effective techniques.
Third, they actually mention special needs children. Once. On page 130. It is presented in the context of how to help children handle bullies. If I have a beef with this book it is that they don't address special needs children and their parenting more, but at least they recognize we exist, briefly. I think a lot of the ideas in this book can be applied to special needs children directly - with developmental age taken into consideration - but it would be nice to hear the authors thoughts on this community. Not everything will work. The extended heart to heart discussions of a child's behavior post facto would probably spiral us back into the situation, and even if they didn't would not result in the "aha" moments described in the book. Language is just too much of a barrier for this to be effective for us.

One thing that I'm going to have to watch out for as I practice more of these techniques is that I maintain the right "voice" as I deliver the various parental messages they endorse. The calm component is a big challenge with my short fuse temper. Providing choices just doesn't come across the same when offered at drill sergeant volume by a beet red face. The empathy component of delivering consequences is also hard to remember for the same reason. It would be easy to slip into either anger or sarcasm (which is lost on the child anyway) instead of the shared sadness the authors advocate.

Rejoicing Along the Way

2011-01-14T20:30:00.000-08:00

The other day the child made a sticker chart for me. We are big on sticker charts around here. We have been for a long time. Way before I understood what was going on with our daughter, back in the days when she used to pull my hair (hard, repeatedly) every day but "she's just a toddler...she doesn't understand..." was the only explanation I actually got her to stop doing it by using stickers. One morning I noticed that she hadn't pulled my hair (by some miracle) so I gave her a sticker. We put it on a piece of paper. It gradually evolved into a chart and a system. Every day she would get a sticker before nap and before bedtime if she was nice to mommy's hair. Thus began our love affair with sticker charts, though the passion is mostly in the heart of my daughter and not mine. I find them tedious to keep up, which is actually a good thing because any reward system needs to be faded over time and replaced with more natural effective praise. But I digress...

My sticker chart (pictured above) is woefully empty. My daughter told me that I could give myself a sticker every night before bed if I finished all my work for the day. Ha! How did she know I've been struggling with this very issue. Either she's more aware of people's emotions than I give her credit for, or she's heard me (ahem) discussing the problem with other people. Or maybe she's just tired of me telling her that I can't play "money store" (bank) with her because I need to get my work done. I'm pretty sure she didn't read it from a certain blog post...

At any rate she was trying to use a tool that we have shown her for other challenging situations and applying it to my life. How sweet....except wow....it really draws attention to how impossible it is for me to get stuff done. She asks me (often) how many stickers I've earned. "Just one, sweetie..." One day, in a week, I felt like I could honestly say I'd done everything on my list.

Then I read this blog post by Tasra Dawson. We were (briefly) in the same writing group. She's going places. I think perhaps her philosophy helps her along in this regard. In summary she was reminding us (ME) that everything we do should be a celebration, an opportunity to pat ourselves on the back and worship the One who gives us strength. Rather than trying to finish everything how about if I try to be glad each time I finish one thing?

I don't expect this to be an overnight transformation, but I think I need to re-purpose this sticker chart. Maybe I'll get a happy face each day I remembered to rejoice along the way. It sure beats the alternative.

Five Tips for IEP Preparation

2011-01-10T21:00:00.001-08:00

Today I attended my first triennial Individual Education Plan (IEP) meeting. It was not for our daughter, but for a friend of ours. I was glad to go because our first triennial will happen sometime in the next few months here (it's complicated) and I wanted to see what it was like. In today's meeting the answer was: LONG, crowded, and more to come. In this case eleven people were in the meeting room and five were conferenced in by phone. Six people had some kind of report to read and there were quite a few goals to review and revise. I'm still on a big learning curve when it comes to IEP meetings, but there are some things that I think are generally helpful no matter what sort of meeting you're heading into...

Don't go alone. Let's face it - it's intimidating sitting in a room with a bunch of experts often using professional lingo that you may or may not understand, trying to listen to what they are saying, writing things down so you can remember what was said later, thinking about how to respond, keeping emotions in check, etc. Bring a friend, a fellow special needs parent, or another family member. Even if the other person just takes notes it will let you focus more on the other roles you must play during the meeting. This is the role I filled for our friend, taking eight pages of notes.

Remember you are part of the team. This cuts two ways. First, it means that you should try at all times to maintain a professional demeanor. There may be times when this is extremely difficult, which I can say from personal experience. As a parent your emotions will be running strong, but it's really important to keep your cool. Second, don't discount the importance of your role. The other members of the team may know more about speech, occupational therapy, psychology, education or behavior theory, but you know more about your child. You know that they like the color yellow for everything or that they really hate it when the seams on their socks get under their toes. You know how their day at school affects the rest of their day, and you know how to get them to do stuff. You know what works and what doesn't, and THIS is the key to truly individualizing an education plan. There are a lot of general practices that work most of the time for some kids, but you know the little tweaks that will make it work for your kid. Without your input the experts can be left experimenting, and this can waste precious time.

Ask for reports ahead of time. Particularly if there has been a recent assessment, but even for simple progress reports, it is good to look written reports over before you're at the meeting. Remember you will be busy listening, thinking, responding, and staying calm. The last thing you want to be doing is reading through a report laced with jargon, graphs, and test scores in the midst of all this activity. We have generally found that even requesting reports ahead of time you may not get them until the day before, but it's still worth it to read through the reports. Mark things you agree with, things you disagree with, questions you have, and action items that you can draw out of the report.

Go in with clear expectations. I call these my bare minimums. I go into the meeting knowing what I want to come out with. Careful here - you may not get it! It's still good to go in with a list of what you want to see happen. You may decide during the meeting that what the school is offering is equivalent, sufficient, better, or unacceptable, but if you go in without knowing what you want then you won't know how to respond at all.

Give yourself time to reflect. I know I always need a few hours (or days, even) after an IEP meeting to process my emotions, consider what was offered or suggested, and formulate my response. We do not sign approval on the IEP plan until after this processing time is over. You are required to sign that you were present at the meeting, but you don't have to approve the IEP until you are ready to do so. This can sometimes mean a second meeting, but sometimes (as in today's meeting) that has to happen anyway. Often you can just meet your child's case manager (the school staff member who coordinates IEP actions) to sign the paperwork if that is all that is needed. Also be aware that you, as a member of the IEP team, have the right to call another meeting at any time, so even after you sign an IEP if you have concerns that something isn't working for your child you can revisit the plan and work together to address your concerns.

Finally, I wanted to note again that for parents of faith an IEP meeting often has a spiritual component. One of my early posts here addressed those concerns. You can view that post here.

What's your favorite IEP tip?

My Goals for the New Year

2011-01-06T01:35:00.000-08:00

Apologies for the long absence...I was keeping up right until New Year's and then, well, lots of fun stuff happened and I couldn't do everything I wanted to do. Bad stuff happens, life gets full. Good stuff happens, life gets full. Same result, but I prefer option B, thanks!

Meanwhile, today over at the Special Needs Blog Hop they're talking about goals for the New Year. Goals, mind you, not resolutions. Five things we'd like to reach during this New Year. Here are my five:

Get organized. No really. Perhaps I should say get more organized. Three years of just going through the paces and trying to keep up with the essentials has left us kind of buried in paper (among other things). Everywhere I look there are piles of projects that I'm going to work on "later". Well, later has come, my friends. So far I'm using this 21-day challenge except I'm letting myself work at my own pace and I'm not posting photos here because it would move too far away from my purpose. I'm almost done with the second challenge. (Clean off my desk in a day? NOT) I did get it cleared off in one day, but dealing with the detritus has taken another day on its own.

Get a shower. That's my incentive for getting up a wee bit earlier in the morning, which should mean I go to bed a little bit earlier at night. Didn't happen tonight, but you know.

Improve my writing. There's a 31-day challenge for this, which I haven't started yet. I figure I should finish the get organized challenge first. Being subscribed to these via e-mail and Google Reader is letting me do them on my own time schedule, which is kind of essential around here. In fact, I just noticed that 21+31=52, and if memory serves there are 52 weeks in a year, so even if I only get to one challenge per week I'll finish both of these by the end of 2011. SWEET.

Make my husband's lunches more interesting. He used to have this cushy job where he got to eat in gourmet restaurants every day for lunch (rough times, right?) Then when he decided to start our home business again, right before the economy tanked mind you, we cut back to brown bag lunches. That was over three years ago. During that time I've packed him a sandwich, a yogurt cup, some fruit, a drink, and a cookie or two anywhere from 2-4 times per week. Seemed like he could use a little menu variation. So one of his Christmas presents was a new lunch box and thermos. I can send hot leftovers in his thermos. Tomorrow he has requested left-over chicken, stuffing and gravy. Gotta beat cold cuts, right?

Get a clearer vision for who God wants me to be. I'm thinking about starting with Proverbs 31:10-31. My primary job right now is wife and mom. There are other things I do (writing, supporting my husband's business, leading our church's Sunday School, volunteering at my kids' schools) but wife and mom are at the top of the list. The Proverbs passage has long been held as the "ideal" woman. I think one large chunk of the things I struggle with comes from trying on my own strength to meet a lot of "ideals." I have high expectations for myself and for my kids, which is not all bad, except when it is. Loving has to come before expecting, I think. So instead of looking at the Proverbs 31 woman for what she does (I already do plenty) I'd like to find out more about who she is...her foundational character. I'm thinking that's how she gets it all done well. In the end...

"Her children arise and call her blessed; her husband also, and he praises her: "Many woman do noble things, but you surpass them all." (Proverbs 31:28-29, NIV, emphasis mine)

There's doing and then there's surpassing. I'm tired of just doing.

Check out the blog hop...it's fun!

Movie Review - Race to Nowhere

2010-12-29T01:36:00.000-08:00

It's past my bedtime, and I haven't finished reading the book that I wanted to review next. So...I thought I would re-post a review from way back when not so many people (well even fewer than now) were reading Simple Life. My first review ever is posted below. Since writing this the film has been released and is now called Race to Nowhere. I have not seen the final version yet. You can look for a screening near you here. I would love to hear comments from anyone who has seen the movie. With all the debate about education these days, this movie takes a different tack...

I attended an advance screening of a film this evening hosted by our local library and learning center, and the film's producer (Reel Link Films). The film's maker, Vicki Abeles, lives in our area and has travelled across the country to gather interviews for the film. The film is called "Slipping Behind" and it is about the pressures on youth, particularly high school students, but also as young as 3rd grade, to excel at school, in sports, in the arts, and in other extracurricular activities. Among the shocking content I heard tonight:

Applause for a 15 hour/week limit on high school sports commitment (n.b. this is still more than 2 hours/day on top of school work)
Success is currently thought of as constant work, and being good at everything.
In the 1940s high school students did 3-4 hours/week of homework; now it is more like 3-4 hours/day.
80% of students admit to cheating in some form because they don't feel they can do all of the work on their own. This is often viewed as "borrowing" someone's work.
Adolescents need 9-11 hours of sleep each night. Many high school students are getting only 4-5 hours of sleep each night.
What might be an escape from the stress of school - sports, music, theater, etc. often turns into a new form of stress as the competition levels increase or when the student feels they cannot do something they love because they don't have time for it.

What drove me to attend this meeting is the nagging feeling that it spells disaster for children with special needs and those at risk if even the brightest and best are overwhelmed by the current atmosphere of pressure-cooker achievement. In the end the film questions whether we're even teaching youth the right skills when in the work force they will succeed most by being flexible, optimistic, enjoying their work, and being able to work on a team. We are failing ourselves and our children by putting pressure on GPAs and test scores because the best conceptual learning does not occur under pressure. It happens with real world applications and time for exploration. If students who learn things readily and need only a modicum of discipline to focus on required tasks are struggling to succeed, how will the child who struggles to read or write or whose attention drifts easily be able to even subsist?

I'll plan to write a response to these questions from a Biblical perspective in my next post. It would be easy to get wrapped up in fear with these ideas floating in my mind, but I will trust instead that God has the answer.

Part two Achievement
Part three Achievement
Part four Achievement

A New Christmas Story

2010-12-24T23:04:00.000-08:00

The other day my daughter came and asked me if she could do "stickers on my computer." By this she means she wants to use the clip art in Word. As I was setting her up she said she wanted to use Jesus stickers because it is Christmas. So I typed "Jesus" in the clip art search box and left her to do her thing. She is getting pretty good with Word. She picked out four clip art pictures:

After picking them she needed a little help making them larger and then she wanted to print them out in color. Then she wanted to "read" the story to us, first Daddy, then me. Daddy came away from the story with a grin, so I knew this was going to be good. After she told me the story I asked her if we could write it down so I would be able to remember it. She wasn't too keen on this, but she did write down the first line herself and then dictated the others to me. So here for your reading pleasure is my daughter's Christmas story:

one Day There wus in egg in Jesus crADL.
(One day there was an egg in Jesus' cradle.)
The house was very dark.
All the animals came to sleep with Jesus.
The plus (the star) glowed in the dark; every night it did.
Jesus was fast asleep. He made those four lines. (by snoring)

There is so much about this story that I love, but I'll focus in on three of them.

It shows me how much she relies on visual cues to understand and therefore sometimes misinterprets what is going on. I'm pretty sure that's supposed to be baby Jesus' head in the manger, not an egg. She's right, though, it does look like an egg, and why shouldn't there be an egg in a stable manger? I suppose there were chickens around...I don't know.
I love the very real sense of personhood that she envisions for Jesus. No halos and meek and mild baby here. He's fast asleep and snoring away. Did you ever imagine Jesus snoring? I wonder if he did...
It's another misinterpretation, but very special in its own way. That's a crucifix, not the Christmas star (or a plus, for that matter), but we do often show the Christmas star in a cross shape, and why is that? Have you ever seen a star with a cross shape? I'm not too much of a star gazer, but I have never seen anything but brilliant points of light, twinkling to be sure, but pretty much circular if anything. Meanwhile, isn't it good to remember Easter even as we celebrate Christmas? His birthday wouldn't be so special if the whole purpose of His coming wasn't what it was. He came with the express purpose of paying the penalty of our sins by dying on a cross. He not only died but He also conquered death by coming back to life on Easter morning. How fabulous to be reminded even as He lays in a manger (cuddling His egg and snoring?) that He came to fill us with abundant life.

This story, by the way, is now wrapped and sitting next to Santa's cookies and milk. Yes, she made a story about Jesus to give to Santa. I love it.

Merry Christmas to you and all of those you love.

May you be blessed with His peace and goodwill this season.

Amen.