Take me or leave me. I am who I am. No apologies.
I’ve seen a lot of people advocating for themselves online lately, using language similar to what is above. I admire that strength and conviction. I respect it. (Come on – look at the blog’s title!) As an attorney, I embrace it when it comes to my clients. As the mommy blogger of a special needs child, though, I would be less that honest if I said that my posts do not keep in mind the diverse population of the blogging community when I write.
It’s not that I do not believe what I say. It is that I know there are others who do not think or believe as I do. I respect the right to differ. I respect my right to have my say.
Very recently, a television program was produced here in Northern California by a local PBS affiliate which features a snapshot of my son’s story. I had no say in how the program was written, produced or edited. My child and I were just one of several families featured, discussing autism, in 26 minutes and 46 seconds for a television viewing audience.
I was afraid, for the longest time, about how the program would turn out, and what its message would be. From the moment I consented to participate in February to May 30th, when I saw the finished product at its premiere, I’ve had a continual low-level of stress over how my son and I would be portrayed and edited, and what the message of the program would be.
When the room went dark at the screening, I was nervous. As I watched and learned, I became impressed. I liked it. I know there are people who won’t like it because there is always some segment of the population that will debate most anything. I see that coming.
The program was well-written and factually accurate, as well as filled with information new to me. I am honored that my son is among the stories for a couple reasons. Dr. Chez, who I’ve written about here and here, is one of the most important people to touch my son’s life. Dr. Greg Buch, our behavioral therapist, who was also interviewed for the program, is the other. The program explains why they are so influential in changing my son’s life. I hope our snippet of a story may help bring some awareness of the benefits of EEGs, ABA and autism, in general, to a public that remains largely unaware.
The program brings autism to life through several families’ story. The first is Dr. Chez’s stepdaughter, Allison, who is 19 and on the spectrum. She is a beautiful young woman, who lives independent of her parents with supported services. It is immediately apparent how Dr. Chez is personally invested in medical treatment of autistic children and adults alike. It showed me how fortunate my son is to be under the care of such an incredibly brilliant, empathetic and honest medical professional. I would recommend this doctor to everyone, regardless of age or “place” on the spectrum.
Other autistics include a 44 year old adult male who lives in a group home and attends a day program. There is the story of a couple with two very young children who both have autism, another young boy with autism, a 20 year old young man, my son and others.
Additionally, the producers mention the lack of a known “cause”, research regarding causes, whether there will be a “cure”, and the benefits of ABA therapy. There is discussion by the head of the UC Davis MIND Institute about a new experimental program in which parents are taught a form of play mixed with ABA (I think this is the Early Denver Model (see here) via teleconferencing through Skype. By doing this, they may be able to someday expand it across the country and reach more than the 2,500 families they currently serve.
The underlying assumption of the program is that “autism”, as a disability, is not a great life. That it is harder and sadder and “less”. In many ways, “harder” is true. But from this side of the fence, my life is richer and happier. There are a multitude of times a day that I am grateful that my child is who he is. He is kind, smart, loving, non-judgmental, innocent and pure. Sure, there are tear jerker moments, and those are present in this program. There are also some nice, heartwarming moments, within the program. Overall, it paints more of the struggles than successes. Perhaps that’s just reality but, in my mind, it’s not our reality.
The program’s last segment is about Amanda, a 22 year old, high functioning, autistic woman who participates in a nonprofit group called “A Touch of Understanding”. This organization provides education to students in school about disabilities, including autism. You can read about them here.
Amanda talks to students to help them understand autism and how to handle bullying. The organization goes so far as to bring headsets into class. The children put on the headsets and close their eyes. A voice explains potential sensory overloads for autistics while a fan and other noises play loudly, to simulate what is heard by some autistics to increase understanding.
The program ends with Amanda’s voice reciting her favorite quote from The Lion King:
“And so, we are all connected in the Circle of Life.”
If you are interested, my understanding is that the program, Autism: Emerging from the Maze, will be available online, next week. (You can see more about the program here – when you click you will see a big beautiful photo of Tootles in the promo!) before it actually airs on June 13 at 7 p.m. on KVIE TV. I will post a link to the online version of the program when it becomes available. And for the record, without apologies, I liked this program (not that I’m biased or anything)…