Sunday Digest 44...

...which I'm writing on Wednesday. Yeah...tough week. Actually I played a lot last weekend and I'm kind of paying for it now. Anyway - here are the coolest, most inspirational, most informative, most heart-tugging posts that I've found in my Internet roving over the last few weeks. Please enjoy and be sure to tell them you found them through The Simple Life.

1) This piece on waves from kidz pretty much sums up where I've been for the last four years or so. I'm learning to find treasures amid the surf.

2) As usual, Varda at Squashed Bologna nails it again with her piece about words. Varda is responding to the story about the father who planted a microphone on his son to find out what was happening to him during school. He discovered that his son's instructional staff were being verbally abusive to the children in his special needs classroom - children who often do not have the verbal abilities to tell their parents that something very wrong is happening. It's every special needs parent's worst nightmare. Yes, words are powerful.

3) I love reading Laura Shumaker's blog. Her book A Regular Guy was particularly meaningful to me because we live in the same area and I could relate to so much of her story from her son's early days. I also love reading about how Matthew is doing now as an adult with autism. On the one hand it's hard to hear that he is still struggling. On the other hand it's kind of encouraging to know that this is a long process and it's okay that we haven't figured everything out already.

4) Autism & Oughtisms post about words and rhetoric is also important, and kind of what I was trying to say here, but as usual said with more precision by A&O.

5) There have been a lot of mommy wars out there lately: tiger moms, working moms, stay at home moms, attachment parenting moms, blah blah blah. Katy at Bird on the Street says she is "Just a Mom" and that's plenty. I agree.

Work

A lot of people are looking for it. Evidently being a mom doesn't qualify (at least in some people's lexicon.) A few people are addicted to it, but a lot of people wish they didn't have to do it.

I have kind of an interesting perspective on work. I have tried to juggle work and being a mom in just about every combination known to woman. There are pros and cons to each situation, and I still haven't figured it out by any stretch.

I was a full-time mom when the child was a newborn until she was 8 months old. Then my maternity leave ended and I "went back to work." She was a pretty demanding baby, a function of what we now understand as her sensory disorganization and oral motor challenges. Honestly I was pretty overwhelmed with her care, and just starting to hit my stride when I resumed my teaching position. I'm very glad I had that time with her, but since I had expected to return to work I didn't really allow myself to settle into being a mom.

When I returned to my job my husband and I had a strategy to keep us both working and to keep the child out of daycare. It worked for a while, but we were stretched thin, and we knew it early on. It didn't make sense for me to keep working and essentially hand over my paycheck to someone else so they could be with our daughter. So I finished out the academic year and returned to full time momming.

It took a while for me to settle into my role as a stay at home mom. I wasn't bored (too busy for that...) but I did miss the sense of accomplishment that comes with completing a project or knowing that you've truly been helpful to someone. Somehow folding the laundry didn't quite cut it. I still enjoyed the new freedom, though, and explored some new hobbies. Just when I was starting to get in step again, the twins arrived on the scene, and the child's issues came front and center. Suddenly we were stretched again physically and emotionally. The economy shifted, and now here we are...

It became clear that I needed to start working again, this time from home and in partnership with my husband to boost our income a bit. I have to admit there is a piece of me that is loving the feeling of professionalism, and problem-solving, but it may be the worst of both worlds. I am distracted from my kids who still need a lot of supervision and training, I'm limited "at work" by what my kids need, and I'm still seen as an "at home mom" who has so much free time on her hands to...

The point is, work is important. It is important not only as a means of support for our families, but as a fulfillment of a basic human need. Adam and Eve worked in the Garden of Eden even before that whole apple incident. Their work was satisfying and fruitful without the drudgery that stifles us today. We were made to work. In whatever way you work - in or out of your home - it's important to understand that you're striving to do what you were made to do, but in a world that is waiting to be restored. It won't ever be quite perfect.

Waxing eloquent on the Wonderful letter W. Click here to see the other works of art...

Sunday Digest 43

Time to share the best of the things I've found while floating through cyber-space the last few weeks. I hope you'll visit and enjoy the links below and let them know you found them through The Simple Life:

1) One of my best new finds is Just a Lil Blog by Jim. It is great to get a dad's perspective on special needs parenting. His post People, Not Data really resonated with me and added to what was already brewing when I decided to write my own post "Making it Good" over at 5 Minutes for Special Needs.

2) Varda at The Squashed Bologna always has something to speak to me - several recent posts nailed me actually - but this one, which was a rerun from Hopeful Parents is one of my favorites. We need to start planning for the future of all of these young people now identified with autism or related disorders. The world is going to have to change big time!

3) I LOVED this take on Trisomy 21 by Tammy at Praying for Parker. So many of these "disorders" are naturally occurring conditions that, while challenging, have always been a part of the human condition.When will we accept this?

4) And, while we're on the subject of Down Syndrome, please listen to the testimony of this young man who reminds us that even though we're all different, we're all the same. We all need God. Hear how God used him to reach out to special needs children and their parents and teachers.

5) No matter what you're facing this week, it's good to remember that we each meet the future at the rate of 60 minutes per hour. Some things (the tedium of laundry and dishes) we wish could go by faster, but others, like the wonder of a child exploring the world around them we should stop and enjoy a little more. Tsh Oxenreider shared these thoughts at (In)Courage.

Book Review - Being Me

Being Me is another great public library find. I am not sure which child decided that we needed to bring this little gem home, but I'm glad it ended up in our library pile. At first I thought it was just a cute book about various personality traits of this spunky little girl with poof ball hair, which it is, but it is more. This is a little girl that almost any child can relate to. She likes dressing up, painting, doing cartwheels, and eating chocolate chip cookies. She has to do chores. When she's not at school she spends time with her baby sister and her parents. She seems like the kind of girl you would want for a friend, and she is.

The difference is so subtle, that I almost didn't catch it the first time we read the book. Stated matter-of-factly among all of the other attributes, the little girl informs us that she can't hear. In fact, it seems almost like a benefit as the page where she proclaims this bit of news is one of those "so much noise you're head will split" kind of pictures. Oh, the picture itself is quiet, but what it depicts is a blaring siren, a barking dog, a wailing baby sister and a jet plane soaring overhead. The parents are clearly out of sorts with all of the noise around them (maybe especially the baby) but the little girl is just as happy as can be.

She goes on to explain that she talks with her hands - a concept my children are familiar with thanks to Signing Time. These two differences are tied up with a neat conclusion that we are all different, even though there are a lot of things we have in common, too. Differences are celebrated - I love you, you love me. That's it. Short, sweet, simple. Perfect.

This is exactly the sort of thing we've been talking about a lot at our house recently. Helping the child understand how she is different from her peers has been an on-going conversation. I know it is sticking because she keeps asking me questions about autism. Helping her understand that her differences are just a part of her and not something to be ashamed of is important to me. She is loved, and while the things that make us the same help us to get along and get things done, differences are important, too.

Some features that I have grown to love about this book are the illustrations, which pack a lot of meaning into the simple prose. To me the characters are all fairly ambiguous ethnically, which adds to the universal appeal of the children in the story. The text is simple enough that my four-year-olds have enjoyed reading the story again and again. Hopefully we can fit in a few more readings before we take it back to the library.

Reprise - Timer Tools

We are feeling the sandwich squeeze for the next couple of weeks as we are taking on my mother-in-law's care to give my sister-in-law a little break, and hopefully enjoy Easter with Grandma. To make things a bit easier I am reposting this oldie but goodie - originally posted April 2010. I started using timers with the child, and now I find I use them for myself almost as much as I use them for her...my frazzled brain needs something to remind me that I was just about to do something. My daughter has also taken on setting her own timers - for when to do homework, how long to use her mouthwash, when I've told her she can watch a show. It is a great skill to learn. Timers are just wonderful...

Many children, but especially those with special needs, struggle with transitioning from one activity to another. One very powerful tool to helping a child with special needs navigate their day is the use of a visual schedule, but just knowing the order of events to expect may not be enough. How much "time" can be alotted for each activity may also need support tools. For children with special needs a portion of the struggle can be understood as a poor concept of time. How much time to do I have to play? When do I need to be ready to go to school? What time does the party start? When will my friend come to play? All of these questions and more may be hard to conceptualize, vocalize, or comprehend the answer to.

Allow me to introduce you to my favorite time keeping tools:

(pictured above, left to right, top to bottom)

The digital clock - ideally a child will also learn to use an analog clock at some time, but when a child has learned numbers up to 59 a digital clock can be a much more accessible tool. We use the digital clock in our car to talk about what time we need to be somewhere, and what time it is now...so are we running late and needing to hurry, or do we have plenty of time and can relax.

The Time Timer (TM) - available in many teaching supply stores, the Time Timer also comes in a smaller more portable version, and is an excellent tool for children who are extremely visual. "How much time do I have to play?", "We have 30 minutes before we need to get in the car. Would you like to see how much time that is?" After a lot of use the child knows a little red is a little time, etc. There is also an audible (but friendly!) beep when the timer reaches zero. Our favorite use for the Time Timer is to set a kind but firm limit on "snuggle time" in the morning before time to get dressed. Because we always use it for this function we need no verbal reminders of what it means when the timer beeps.

The sand timer - also available in many teaching supply stores, and in various lengths of time. We have a one minute timer and a two minute timer. Thankfully we don't use them too much any more. They were primarily used for "time outs". Our time outs are used to reinforce our house rules and as an opportunity to calm down. Using the sand timer can be beneficial because watching the sand flow from one side of the vessel to the other is mesmerizing and has a calming effect. Hooray!

The portable timer - excellent for trips to the park ("We need to leave in 5 minutes...I'm setting my timer"), events in the back yard, or anytime that we're moving around the house a lot. It can also be used when giving the child a choice (and a little control) over which timer they want to use. "You can play on the computer for five more minutes...would you like to use the red timer (Time Timer), the white timer (portable), or...

The kitchen timer - ours beeps until you turn it off, so it is harder to ignore and claim that it didn't run out yet. It's only downfall is that it is rather fixed in place, so it requires some back and forth if you are elsewhere in the house.

I think as our world becomes more hectic, more technological, and more complicated, everyone seems to struggle with time management. There's a whole arsenal of tools to help our kids begin early to learn skills to manage their time, and bring some measure of peace to the flow of our days.

Special thanks to two wonderful people, Clarissa Montanaro and Robin Hauge, who turned me on to the power of using timers with children with special needs. Please contact them at clarissamontanaro-AT-gmail-DOT-com for more information.

Trisomy 16

Trisomy 16 occurs when an individual has three copies of chromosome 16 instead of two copies (one from each parent.) For a brief layman's review of how trisomy occurs you can check out my overview post here.

Like other trisomies, there is full trisomy 16 and mosaic trisomy 16. In full trisomy 16 all of the body's cells have an extra copy of chromosome 16. This form is not compatible with life and causes miscarriage It is the most common chromosomal cause of miscarriage in the first trimester. In the mosaic form the effects are less severe and can vary widely. Symptoms of mosaic trisomy 16 include slow growth before birth (intrauterine growth retardation, IUGR), delayed development, heart defects, speech delays, kidney defects, and reproductive disorders. There is also a partial trisomy 16 (16p+ or 16q+) where there is an extra arm of chromosome 16. Interestingly, one source (NIH) I looked at indicated that one form of duplication (16p11.2+) may give rise to an autism spectrum disorder and language delay.

Trisomy 16 disorders can be discovered prenatally. I say discovered because often the tests cannot completely determine the level of trisomy 16 that is present. Alpha Fetal Protein (AFP) screening, chorionic villus sampling (CVS) and amniocentesis are all tests that can be performed, but each has its limitations and risks. It is important to discuss any test results with a genetic counselor. Amniocentesis is probably the most accurate diagnostic procedure. Ultrasounds can help determine whether or not any physical defects are present. Many of these can be corrected by surgery. It is sometimes possible that the trisomy is confined to placental tissues (which can lead to premature birth and/or hypertension in the mother). A pregnancy that continues beyond the first trimester would indicate mosaic trisomy at most.

I would strongly encourage you to read some stories from parents of children born with mosaic trisomy to learn more from their personal experiences. 

For more information please see the following links:

• Clinical summary
• PDF from Unique on Trisomy 16
• Overview from Disorders of Chromosome 16

Lemon Pie

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

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.

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.

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.

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.

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.

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"...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.

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

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. 

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 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!

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 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']

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.

Sunday Digest 33

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!

Sunday Digest 32

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)

Sunday Digest 31

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.