Rett Ramblings

Louder Than Words: A Mother's Journey in Healing Autism

Here’s a story from the September 18^th 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

 

Rett Syndrome respite worker facing felony charges for neglect and abuse

Those of us in the Rett Syndrome Community who knew about this were shocked and saddened to hear about Stephanie Cupps of South Carolina, who was seriously injured in 2004 in a vehicle accident when her respite worker (who has legally drunk at the time) drove off Interstate 20 and crashed the vehicle. The details of this story were told by Stephanie’s mother Amy Davenport one of the Rett Syndrome email discussion groups.

We learned from this WLTX-TV story that on August 31, 2007, prosecutors finally filed charged the respite worker with neglect and abuse of a vulnerable adult, which is a felony.

Amy was quoted as saying: “It's up to the court system now. I do feel like we followed it through, and that's what I wanted to do for Stephanie."

We offer our heartfelt kudos to Amy for the courage and persistence in pursuing this matter. It would seem to me that “following through” may not have been as easy a task as it would seem. It would probably have been easier to simply let the past go by, particularly with the rigors of caring for an adult with Rett Syndrome. The challenges of navigating any legal system are significant, although I am not certainly familiar with what Amy went through. I would imagine she had to spend a great deal of time convincing a prosecuting attorney why they needed to invest their limited time to more fully investigate what many might have considered a "cold case".

Kudos also to those in the Rett Syndrome Community who may have provided the encouragement, inspiration, and advice that may have bolstered Amy’s follow through efforts. This type of encouragement and assistance is what makes being a member of the Rett Syndrome Community such a joy. Kind words of encouragement can indeed inspire others to not only get through the rigors of each day, they can empower ordinary people to do extraordinary things.

We are hoping to learn more about how Stephanie is doing and will let you know more. Stay tuned...and keep those kind thoughts coming! It sure feels better than hearing hostile words doesn't it?