Saturday, December 31, 2011

The Year 2011 in Review

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?

Friday, December 23, 2011

Ability Awareness - Part 2- Building Peer-Advocacy

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.

Monday, December 19, 2011

Ability Awareness - Part 1 - Building Peer-Advocacy

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.

Sunday, December 11, 2011

Bullying Digest - special edition

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.

Thursday, December 1, 2011


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.

Jenny Matlock

Wednesday, November 23, 2011

Book Review - the show-and-tell lion

"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."

The Show-and-Tell LionChildren 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!

Wednesday, November 16, 2011

New Series - Thoughts on Bullying

I am about to abandon my normal blogging 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.

Saturday, November 5, 2011

Trisomy 8 - Warkany Syndrome

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, October 30, 2011

Sunday Digest 37

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.

Thursday, October 20, 2011

Fallen Stars

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 every pile of autumn leaves carries with it a sense of impending doom.

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.

Jenny Matlock

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.

Wednesday, October 12, 2011

Book Review - Whole Body Listening Larry at School

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...

Monday, October 3, 2011

Clean Up

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.

Friday, September 30, 2011

Dignity and Humor

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, September 18, 2011

Sunday Digest 36

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" 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.

Thursday, September 8, 2011

Ugh! and Understanding...

Jenny Matlock

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 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.

Wednesday, August 31, 2011

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

A Mother's Courage: Talking Back to AutismMy 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. 

Friday, August 26, 2011


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.


Monday, August 22, 2011

Camping Special Needs Style

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!

Saturday, August 13, 2011


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, August 7, 2011

Sunday Digest 35

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 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!

Friday, July 29, 2011

Guest Post

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!

Wednesday, July 27, 2011

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

D.W.'s Guide to Perfect Manners
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.

Friday, July 22, 2011


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.

Monday, July 18, 2011

Insomnia? Some Tricks that May Help

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 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 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's always good to have more tools in the kit. Just click on comments below.

Sunday, July 17, 2011

Sunday Digest 34

Here's the best I've seen while scouting around...still horribly behind on blog reading, but I was caught up on 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 can read about it here. [We don't need a makeover so much around here as someone with some insane organizational case any reality TV shows are scouting for story ideas...just sayin']

Thursday, July 14, 2011


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.
Jenny Matlock

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

Saturday, July 9, 2011

Phelan-McDermid Syndrome Primer

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.

Wednesday, July 6, 2011

Rerun Book Review - When I Feel Angry

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.



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