August 1, 2006
August Grooves - Preparing for September

It’s hard to believe it is already August. It seems like school just let out. Where did the time go? I’m already beginning to mourn the time I will lose with my kids when they go back to school. There’s something about the days of summer that are comforting.

When I begin to see the school supply lists at the store, I also begin a routine (or "Groove" to quote Dennis McGuire) that started ten years ago after publishing “The Mac Book” in Volume 1, Issue 3. I begin updating our Life Book for Andy’s team. Some years I get all the information into the computer and other years it is hand-written. Regardless, I do my best to pull together a portfolio to share.

Our Life Book has changed a lot over the years. In the beginning the information basically chronicled our family and our hobbies. Over time it has become a key tool for explaining the subtleties of Andy’s communication style. Andy’s book includes photos of friends, samples of activities we have done at home, and information about the combination of autism and Down syndrome for those who wish to learn more.

Truth be told, Andy’s Life Book is as much for me as it is for his teachers and him. If I keep it concise and easy-to-read, I can refer team members and support people to specific sections for the predictable questions they will ask:

• “What signs does Andy understand?”
• “What does it mean when he slaps his chest?”
• “Does Andy use symbols or photos?”
• “Have you tried….”?
• “What does Andy like to do?”
• “How does he tell you he needs to use the men’s room?”
• “How does he communicate?”

And then there are the topics that I find essential to know about anyone I am supporting they forget to ask:

• Things that scare me.
• How I tell you I am anxious or unsure of what is happening..
• What to do if I say “no.”
• Things that motivate me.
• Who do I know at school?
• What do I do on the weekends?

We also include information from people who have supported Andy and know him well. Meagan was a college student (she is now a teacher) who worked with us for over two years. She created an insightful list of what Andy’s different noises and gestures mean when they are together.

View table of Andy's noises and gestures and their meaning.

Reading Andy’s Life Book saves everyone time, frustration, and anxiety, especially Andy. It’s a crash course in “Andy 101.” The trick to it is actually reading it. Some of Andy’s teachers have copied pages to have as a ready reference or to use as training for educational assistants. Others use it as a reference when problem solving. Others still never opened it, but thought it was pretty.

I love having the Life Book to refer to for the most basic, yet essential, answers. It saves me a good deal of time and phone calls during work hours. It is true that some people have asked me why I can’t merely answer the question. I try to stay firm and let them know that homework is required to pass Andy 101.

There have been a few years when I haven’t been able to complete his Life Book in time for school. I always regret this later.

Not every person with Down syndrome is as much of a puzzle for people to support as my son. But everyone, whether or not they have a disability, is unique. Think of the things that would most help your child’s school, support person, job coach, or housemates to know. Have your child choose the topics to share or add to the topics and lists. It is also a good way to communicate family values, expectations, and dreams for each other.

It's always a good time to pull together a Life Book for your child’s school staff, job coach, or anyone who supports your child regularly regardless of age. The first one is the hardest. Be kind to yourself and eventually put it in the computer. This way you can modify the files every year rather than starting from scratch.

After a while, it’s a great trip down memory land and documents all sorts of great things about your child you might have forgotten otherwise.

Take good care,

Joan Guthrie Medlen, RD, LD, is the Project Director of Creating Solutions, Founding Editor of Disability Solutions, and the mother of two grown boys, one of whom has Down syndrome, autism, and celiac disease.

©2006 Joan Guthrie Medlen
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