Here’s a story from the September 18th Oprah TV show that we thought might be of interest to the Rett Syndrome Community. Model, television personality and actress Jenny McCarthy, mother of a son named Evan who has Autism has a new book called Louder Than Words.
She was there to promote her new book and to share her story about the techniques she has learned that have helped her son and her cope with the challenges of Autism. She was joined by friend and actress Holly Robinson Peete, also a mother of a son with Autism.
There was much discussion after the show online, but I found one particular viewer comment quite thought provoking. It was from a man with Asperger’s/High Functioning Autism. He has two son’s with Asperger’s. He indicated that every time Jenny and Holly insisted that their sons were “normal” children trapped behind Autism that bothered him. He was by far in the minority of those who posted there opinions after the show. Most people were grateful and thankful for all that Jenny and Holly had to say. In this man’s case, he was grateful and thankful for the opportunity to say this to them and what we call the “Oprah Community”:
“I am a normal Autistic and all I want is to be valued for who I am not be viewed as disordered. The medical community saw a list of common characteristics in a group of people decided it was a disorder and slapped a label on it. That doesn’t make it a diagnosis it makes it a value judgment. People with Autism aren’t disordered they simply have more work to do than the rest of you and by working with them more is required of you as well. Don’t grieve your less than perfect child or your less than perfect life. Instead celebrate the gift of each moment and walk the path of opportunity your child’s life with bring. Don’t think of your child in terms of what they don’t do or don’t give you that you think they should. Challenge your own perceptions about who you think your child ought to be before you harm your child because of your own subjectivity.”
Like I said, it was quite thought provoking. If you’d care to share your comments on the subject, we’d like to hear them. Just click on the comments link below.
As always we appreciate your continued support and encouragement at Rett Syndrome Magazine.
Greg