Wednesday, April 01, 2009

Welcome to Autism Epidemic Action Month.

So here it is, April 1st. The kickoff of "Autism Awareness" month. I'm going to do my best to never refer to these 30 days as being about awareness. If I am "aware" that a child is drowning in my pool and do nothing I'm off to jail for negligence, right?Welcome to "Autism Epidemic Action Month." Pick up copy of Jenny McCarthy and Dr. Jerry Kartzinel's new book HEALING AND PREVENTING AUTISM and give it to someone who has a child with autism but who does not yet know autism is treatable. Call a friend who has a child on the spectrum and tell her you're coming over for two hours to watch her child while she goes out for coffee or tea or simply crawls into bed. Send a few bucks to to help a family pay for biomed treatments. Pop into school and offer to laminate PECS for a few hours. We're doers - not do-gooders. There's a difference. Awareness is no longer enough. It never was.

I wrote this for HuffPo last week about the Sky Walker Matricide case and what it feels like to know I'll die and leave my girls behind. (Hint, paralyzing.) I hope you'll go over HERE TO HUFFPO and leave a comment. This is what I, and thousands of other parents, wrestle with every day. It's terrifying. Autism is neither pretty nor easy nor wonderful - don't kid yourself or let anyone pull the wool over your eyes. Are the kids pretty and sometimes easy and wonderful? You bet your sweet ass.

You think wrinkles and gray hair are the scourges of aging? Try imagining your child with autism as an adult and at the mercy of a state run home, an institution or even prison while you're slumbering away in a pine box.

I'd be happy to look like a Shar Pei if I could stop worrying about what is going to happen to my girls when I die. I sit at Church on Sunday and listen to my priest tell me about the joy that awaits in heaven. "Are you crazy?" I think to myself. "What will happen to my kids?" I know won't be the only Mom up there (hey, a girl can hope for the best) who is wracked with worry. We'll wear holes in the clouds as we pace.


Jenn said...

The worry that never ends what will happen to my boy if something happens to me.



Tanya @ Teenautism said...

Well said, Kim. It's time people exhibit more than mere awareness and display some much needed acceptance.

Amanda said...

Personally I'm banking on my girls' cousins looking out for them, but who can tell when we're gone? All I can do is my best while I'm here, and that includes keeping in shape so I'm here for as long as possible. After that I'll be reduced to haunting!!

Cheryl Kauffman said...

As I was reading your post, there was a story on CNN with some parents saying exactly the same thing. It is heartbreaking. I feel fortunate that since my daughter is high on the spectrum, she will probably be ok. I think that since people like you are working so hard and demanding action, it is encouraging more research to be done. Hopefully before our time comes, there will be a cure, or at least better help available to our children.

Anonymous said...

"Acceptance" of what Tanya? How about some action. That's the message that needs to be out there. To be "aware" or to "accept" does exactly WHAT for the child? Nothing in my opinion. People need to be educated in the action they can take (biomed, therapies) for their kids and get started asap. This entire theme of, let's push "acceptance" does nothing for the child.

Kim Rossi Stagliano said...

I'm wondering who is going to accept Sky Walker, now that his Mom is dead and no one in his family was able to take him, leaving him in jail for 2 months and now in a mental institution. Should we just accept him or get the poor young man help? I vote for help. I don't know a soul who doesn't accept my girls - even the kids in school are open hearted every day. But Jesus Christ, my girls need to be able to care for themselves in some basic way. Love don't pay the rent, and it don't heal real medical problems.

Anonymous said...

I think it is very easy of parents of Asperger's kids or Asperger individuals themselves to preach acceptance and awareness for their quirkiness. Oh Please. It it takes a hell of a lot more than awareness to help most kids on the spectrum.

Kim Rossi Stagliano said...

Anon, I know many people who have great struggles with their HFA and Aspergian kids. I don't think it's that cut and dried.

We autism Moms all face great difficulty in trying to do the best for our kids. I feel strongly that the medical based approach is the platform on which to build the behavioral. I don't waver from that.


Carolyn Lund said...

Dear Kim,
I am Director of Development for the Children's Psychological Health Center. Given the growing need to address autism, I am helping Dr. Gilbert Kliman to publish a newly completed book detailing his 20 years of research in treating autism in preschoolers. His findings are very compelling indicating that 3 years of therapy in a preschool setting can alleviate autism and promote significant IQ improvement. In an effort to disseminate this information as quickly as possible, could you recommend a literary agent that understands and is interested in representing books on autism?