April is autism awareness month . . .

The month of April means many things here in Georgia – warmer weather and its requisite pollen, the beginning of baseball season, the winding-down of the school year. For the past 30 years or so, April has also been designated ‘Autism Awareness Month’ in the US and abroad. It’s a time of conflicting emotions for me, some grateful, some hateful. It is truly gratifying to see the good work being done on behalf of people with autism and their families. Awareness has increased dramatically since my twins were diagnosed in 2001, not to mention since my sister-in-law was diagnosed in the early ’70s. On the other hand, any time there’s more awareness there’s more controversy, more bad information, more people making a buck off the challenges of others, and more daily reminders – especially in the media – that one’s station in society is “different”.

The over-arching theme this year is the emphasis on continuing support for adults with autism. Parade Magazine’s Sunday feature titled “Who will take care of Dana? Autism’s Lost Generation” was emotional and hard for me to read. So I filed most of it in the back of my mind to process later. But it’s an important point and one our family, along with thousands of others, will face someday. As difficult as it is to navigate educational options (or lack thereof) for our kids with autism, it is exponentially more difficult to find options for them as adults once they’ve left the relative safety and structure of the federally mandated educational system. From the article:

In the next 15 years, an estimated 500,000 autistic children like Dana will graduate out of school systems in the U.S. and into the unknown. Meaningful programs for them are scarce, and funding even scarcer. “We’re at the moment of truth to address the numbers of children aging into adulthood,” says autism activist Linda Walder Fiddle. “Their lives are hanging over a cliff, and we must not let them fall.”

Because of people like Dana’s parents, I hope there will be more and better programs for kids like mine when the time comes. And hopefully our advocacy for Rob and John will help families coming down the line, too.

In February I wrote about autism and other developmental disabilities becoming the new civil rights battle of our time, and I was delighted to see the Chairman and CEO of the Special Olympics, Tim Shriver, refer to it as such on a recent episode of ‘Real Time with Bill Maher’.

 

 

I often enjoy Maher but he’s way off the mark here, particularly when he says schools spend more money on their special needs kids, insinuating our kids are getting a quality education because of it. Nothing could be further from the truth and he’s perpetuating a dangerous fiction. While it is true that districts are allocated more funding for students with special needs from federal and state sources (depending on the students’ IEPs), it’s foolish to assume all that money goes directly to providing an appropriate education for our kids. I suspect districts and administrations gobble up much of the funding because, in my experience, it damn sure doesn’t go to technology, innovation, support in the classroom, or equitable wages for paraprofessionals and teachers.

I confess I had an antiquated view of the Special Olympics. Robert will be participating in some of their events this year, but it seems the work being done by Special Olympics is a lot more than allowing our children some physical recreation in a safe and non-judgmental environment. Shriver describes the Special Olympics as a new civil rights movement. YES! He also makes the most eloquent case I’ve ever heard about why we can all really do without “the r-word”.

One more thing I’ll touch on briefly here. We recently visited a private school for Rob for next year. It’s tiny and almost literally has a 1-1 ratio of students to adults. It’s run by folks we’d previously been somewhat connected with when the boys were younger. Rob’s doctor recommended the school and, while there were some drawbacks – the most obvious being a complete lack of exposure to typical peers – we were hopeful that we’d find a way for Rob to attend. It turns out, he “isn’t a good fit” for them. I’ll give you my definition of what that means. It means “we don’t see the potential in your child.” “We don’t think we can help your child.” “We don’t believe in your child.” “We don’t want your child.” “Even though we have one adult per one child in this program that is purportedly designed for children with autism, we can’t help YOUR child.”

What kind of place is this when even the private schools, first John and now Robert’s, can’t help? Not even for the annual cost of a mortgage for God’s sake? What then? I’ve often spoken about my dream of starting a school and I will make that dream a reality. Only now I’ll do so out of necessity because I don’t know where my kids will go to school next year. The local high school doesn’t have an “autism” program, so we’d have to go to a different high school. (Nothing says community like sending the kids with autism to a completely different school, but whatever.) I want to bring the same acceptance, support and peer modeling that I’ve seen since Robert started back to school to a new environment of technological innovation, community integration and genuine hope for the future.

Rob’s aide describes him as ‘the most popular kid in 7^th grade.’ I’ve seen it with my own eyes, kids I don’t even know saying ‘Hey, Robert’ and giving him high-fives in the hall. They ask about him if he’s not there and beg to work with him when he is. He’s a cool kid. Who knew? John only wants the same thing. He wants friends. The kids are ready, even if the administrations are not. How to best tap into that?

I would love to hear from other parents in the metro Atlanta area who believe we can do better for our kids. Please email me here.

Peace.

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