I have a digital subscription to Sensory Focus and while all of the information is great, one of the articles in the April 2013 issue caught my eye – Self-Advocacy in SPD: Knowledge is Power by Jennifer McIlwee Myers. I am a big proponent of self-advocacy and my children have been involved in their IEP meetings since they were old enough to understand and provide valuable input.
“First, my parents taught me that I could change situations, and they helped me learn how to do it. It is all too easy to overprotect a child who has SPD and Asperger’s syndrome, and even though neither of those things had a name when I was growing up, y mom noticed early that I tended to hide behind adults and try to get them to handle problems for me. My folks weren’t having any of that.”
As a mom, this is something I battle daily. I want to be there for my children, specifically my son as he goes through some struggles with school, but I also want to make sure he has the tools he needs to make his own choices and take his own actions. Helicopter parenting is an easy thing to do when your child is on the autism spectrum but as in parenting a neurotypical child, it can be as harmful as it can be helpful.
The second thing her parents taught her is that knowledge is power. Myers explains, “When I first received a diagnosis of Asperger’s syndrome, I picked up some books that had sections on SPD. I started reading about how sensory problems could make normal experiences difficult and what those sensory problems look like.”
Knowledge is, indeed, power and that is why my husband and I made the decision to tell our children about their differences when we felt they were at a level they could understand. I know not all parents that have children with high-function autism and/or sensory processing disorder make the same choice but for us, it was important that our children be involved in all aspects of their care and treatment. If they weren’t aware that there was a name for these differences, it would be difficult to have them involved. I didn’t think we’d be able to bring them into IEP and other meetings while having to dance around the A-word.
A big thank you to Ms. Myers for sharing her experiences, as a mom it helps me better understand what my children go through when they are experiencing sensory overload.
For more information, check out the Sensory World website to subscribe to Sensory Focus magazine. If you subscribe, enter discount code MHO to save 15% off of your subscription fee.