Eventually

One of the things that kept running through my brain the other night as I lay in the recliner was autism. It seems to be in the news this week... What with Dennis Leary dedicating a chapter of his new book to autism, and Sarah Palin stating that it's her public cause and Senator McCain claiming that she understands the needs of special needs families better than anyone he knows. Okay. Part of me is grateful to have the bright light of public awareness shined on autism and other developmental disabilities and part of me recoils at the thought of misinformation or trendy "topic of the week" status.

Unlike Micheal Savage [who earlier this year entertained us with his opinion that 99 percent of diagnosed autism cases were merely kids who hadn't been told to "cut the act"] Dennis Leary's sound bites seem to indicate that he believes autism is legitimate, however he worries about grown men self diagnosing as a way to explain their failures. I know... take a moment. I have a hard time visualizing anyone with autism self-diagnosing or an adult considering their potential for autism as an excuse for lack of achievement. But I'm happy to learn that Mr. Leary believes that at least children legitimately have the disability. I wonder what they have when they grow up? Quirks?

As far as Sarah Palin and Senator McCain's belief in her, let me just say thing in a completely non partisan vein...

Sarah Palin does not understand the plight of families supporting special needs children. Not yet. She will eventually, but here's a list of reasons why I make that statement...

  • Her son is only 6 months old. This is a time frame where most people are just beginning to see the challenges their child will be experiencing. And at 6 months, it's too early to say how high functioning her son might or might not be.
  • She has not yet sat through neurodevelopmental therapy with her child and listened to his screams as he's fitted with braces so he can learn to walk.
  • She hasn't been through all the heart breaking evaluations of the birth to three system that begin to tell her how delayed her child is and how many different kinds of therapy lay ahead.
  • She hasn't had to make difficult decisions regarding the costs of therapies and the reality that her insurance will only cover 5 visits a year to therapy. She hasn't had to apply for support dollars from crippled children's services and the shriners in order to continue her child's therapy
  • She hasn't struggled through decisions regarding therapeutic preschool vs. the more affordable neighbors daycare
  • She hasn't faced the school losing her child for an hour and a half on the first day of school. A child found wandering down the street after the school bus dropped them off in a strange neighborhood... a non verbal child who can't tell her what happened
  • She hasn't listened to the district psychologist tell her that her child is mentally retarded and academics are hopeless
  • She hasn't asked for a re-evaluation of her child (as is her legal right) and been told she would have to sue the school district to get them to comply
  • She hasn't listened to her in-laws tell her she's over-reacting about her child
  • She hasn't had to ignore the fact that the school district can't find certified special ed teachers and her child is making do with temporary aides.

And to be honest, she may never have to face some of those scenarios. Through her position in the community, she may be better able to access services for her son. What an advantage that will be for her child to have the best therapies and care available, if that's the case.

While having a child with a disability might make you a better parent, and possibly a better advocate, until you've navigated the public services available to your special needs child, I don't think you can truly understand the needs of all folks with disabilities.

Additionally, having the experience of one child doesn't give you the full scope of the problem. I recommend going to work for a disability service agency... There you will find that those special needs children do grow up. When they enter the adult world, their rights to inclusion (which they've had for 21 years in K-12 schools) disappear. They'll enter a work force which nationally has a 70-75% unemployment rate. Of those that do find work, most are employed at sub-minimum wage. I believe the national average for supported employment is somewhere around $450 per month.

Then look at funding, In the last 8 years, the funding levels for vocational programs for people with disabilities have taken significant cuts. Those budget constraints have led agencies to cut services, cut staff and some agencies closing their doors. Some states have been re-evaluating disability levels in order to exclude folks that were previously qualified and balance their ever shrinking budget.

This a complex, emotional issue that can't be "reformed". It's a system that is overwhelmed, underfunded and undeserved and whose population enjoys one of the the lowest rungs on the socio-economic scale. While you can cut the budget all you like, you don't have fewer people with disabilities to serve, you have same amount, if not more.

Now I'm just getting worked up. My point here, and I do have one, is that talking in sound bites regarding an issue this pervasive does a disservice to the families that do struggle to navigate the services and agencies. It does a disservice to agencies struggling to serve as many people as possible who no longer have funding. I don't want to hear celebrity opinions and candidate sound bites and "awareness statements" that don't lead to results. I am ready to hear real solutions for not only my child, but the clients my agency serves who want nothing more than a job they can go to each day and a sense of belonging.

Gah.

Asthmagirl out