Independence and Self-Advocacy
Independence and Self-Advocacy
Many years ago there was a book that I read by Jennie McCarthy. It was about her son and his journey with autism. Throughout the book, she referenced that her son is now “recovered” from autism. This book came out when Elizabeth was 7 or 8 years old and we were working so hard on our own journey with her global dyspraxia and sensory processing disorder (SPD) and I found myself so intrigued by this phrase that I had not heard before.
What does that word mean? And how did she know it?
I think what made me focused on this phrase was how it was used in a determined and somewhat non-negotiable manner. But, what made him recovered, and others not?
Phrases and terms like this can mean one thing to one person and another thing to a different person. I think that phrases like that area open to personal interpretation.
Since every person with special needs is unique (and has their own strengths as well as well as things they struggle with), phrases like the above cannot be taken as absolute for anyone. There are other terms that are not absolutes either such as independence and self-advocacy. Just because your child is still working on a skill does not mean he or she is still not independent. Or, just because your child cannot ALWAYS speak up for themselves, does not mean they are not self-advocates. To me it is all a gradient, our children are somewhere on the gradient towards independence and self-advocacy.
Instead of waiting for us to reach the ultimate goal, we focus on the teaching that we did (and do) that helps us grow toward these goals. Because knowing that you are working toward the goals and recognizing successes along the way is important, as well as knowing that you will keep working each day. This mindset is the first tool needed to help your child grow toward independence and self-advocacy.
With that being said, how did we help Elizabeth grow to her current level of independence? I will tell you some of the things we did. First, however, let me give you a thumbnail about Elizabeth. She is 22 years old, was non-verbal until age 5, she has global dyspraxia and sensory processing disorder (SPD), she has been in several therapies of some form since she was 2.5 years old.
Here are some of the things we did in Elizabeth’s life and please know that these are the things WE did for Elizabeth, not all will fit your needs, but, my hope is that some will.
We started off talking before she could even talk back. We would tell her what we thought of her day, what we liked or what we thought could have been better. Sometimes this was a minute or two and other time longer. But these early chat times laid the groundwork to having more substantial chat times as she became verbal and as life got more complex.
It was during these chat times that we would talk about behavior, safety, friends, speaking up for herself (self-advocacy) actions, fears and so on.
Before the world got really big for her, we started talking about the WHY’s of what she did or didn’t do in a day to help her process the day’s activities. Sometimes we would use a white board and colored markers to draw a picture to make a concept more real. One time we used 4 different colors to illustrate how to cross the street safely.
Each day provided things for us to talk about to build in independent thinking about life.
We started using one of these in our chat times as well as when Elizabeth was with her tutor. There are so many great ones available now by simply doing a search for them. The one that we used, and that provided the greatest success during her elementary school years, is called Taking Care of Myself by Mary Wrobel. We used this book as a starting off point for topics not yet covered in chat times before. From personal care to safety topics this book covers it all and in an easy way for younger children to understand.
There is now one for young adults, but when Elizabeth was in middle and high school, we used Social Skills Activities for Special Children by Darlene Mannix to help us cover topics that fit her age group better.
The obvious purpose for us with the books was to teach the independent skills. But, it was also to learn which ones needed more reinforcing or which ones were so important that we needed to break them down into steps to teach them to her better for her to process the information in the best way she learns.
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