Next up in the ongoing battle against autism-insanity (RFK jr anti-vax, etc)…
This chapter caught me off guard just now (I hadn’t read it since I wrote it), in that only about a decade passed between the first things I was writing, because practically NOBODY knew what the hell autism was in 2001, to this closing chapter. Things changed quickly, in one way, and not at all in others.
~~~
The Chronicles of Ben
Smashwords Edition
Copyright 2013 by David Royko
https://www.smashwords.com/books/view/361251
https://juggling-autism-the-chronicles-of-ben-royko.com/
ISBN 9780615879109
Chapter 13
LOOKING BACK AT THE ROAD AHEAD
2013
Seventeen years ago, less than a year into our family’s life with autism, it felt like we were exploring a massive cave with a miner’s helmets shining tiny spots of light on walls dark and gray but occasionally flecked with something shiny and hopeful. Usually it was fool’s gold.
I found myself wishing that every politician and Fortune 500 CEO would have a child or grandchild with autism. Autism, at least of the severe kind we were dealing with, was a horrible and terribly obscure disorder that could’ve used some attention from the rich and powerful.
In some respects, our family has been lucky since then, or at least less unlucky than many other families. Ben’s received some fine services, funded by our school district. Currently, he is in an excellent residential program only a six hour drive from our home. We spend every second or third weekend with him.
Still, our family continues to feel, acutely, the economic impact of the first dozen or so years of out-of-pocket expenses of seemingly endless therapy, extra help in the home, occasional but costly respite care, the need for Karen to be Ben’s full-time case manager and through-the-night caretaker (his sleeping was always lousy) and the subsequent loss of income due to Karen not being able to go back to work outside the home, and our need to live in a suburban area we couldn’t really afford in order to have access to a school district that actually could help us.
The world of autism has changed dramatically since we first got here. From few even knowing the word to full-blown public awareness; from virtually no available services to school districts designing and implementing needed programs; from almost no research taking place to scattershot but substantial clinical stabs at figuring it out; what a difference a generation makes.
The availability of autism-specific services, such as ABA (Applied Behavioral Analysis), to mention one example with which we are intimately familiar, has vastly increased. Eighteen years ago, we had to shell out huge sums (all of our savings, which began our deeply indebted financial life culminating in our filing for bankruptcy last year and losing our house this year) and massive effort to create Ben’s ABA program, which was subpar anyway, certainly by 2013 standards. Finding, training and maintaining an ABA “staff” was a losing battle. Now providers are seemingly everywhere, along with clinics dedicated to doing what we tried to do ourselves, often covered, at least in part, by insurance.
It was Ben’s generation that did this, that made the world Autism Aware, because he is part of the explosion, the epidemic, the tsunami of autism. It isn’t a rare, 1-in-10,000 disorder anymore with one book on the local bookstore’s shelf, but a common affliction of 1-in-88 and a whole section in Barnes and Noble’s.
Everyone seems to know someone with autism, or have someone in the family dealing with it, including plenty of politicians and CEOs.
Yet here we are again. As the tsunami starts to crash onto the shore of adulthood, the world is not ready.
Déjà vu never felt so nauseating.
In Illinois, our own “fiscal cliff” approaches, and it’s Ben’s 22nd birthday. That might seem a ways off since he only turned 20 in July but considering how much will be changing and how little there is ready for him, it is just around the corner.
Everything at this point is uncertain, and nothing can be counted on. We’ve been told more than once that we need to have a plan A, a plan B and a plan C — at least. Easier said than done, considering that getting half way to Plan A, whatever that turns out to be, seems to be on a very distant horizon.
Being in Illinois, not a healthy state for families like ours, does not help. But really, it’s not simple anywhere for most of us with adult children on the spectrum.
Ben is doing well in his current program. It’s an excellent place for him. The Monarch School is an organization with great experience and expertise in autism. A highly supportive environment with 24/7 programming, it doesn’t come cheap (ask our school district).
One of our goals is learning what Ben’s interests and talents are that might be applicable vocationally, which is only the beginning. We have found that he likes to type (slowly, hunt-and-pecking), and deliver things around campus, and take stuff for recycling. But no matter what he does, Ben will still need support. Lots and lots of support. Boredom is Ben’s enemy, but the problem is finding things that Ben can do, and that he likes to do, that will fill the hours in his day. All of this will become far tougher and more problematic when Ben moves into the adult services arena, where far fewer resources exist to support him and his day to day life.
If he receives Medicaid waiver funding, there is still the issue of an appropriate placement. Ben’s needs, like many other people with autism, are intense. Even if money were no object – even if we had Bill Gates’ money – there aren’t many places where Ben could thrive. Heck, forget thrive, just be happy.
We are exploring the agricultural model, our favored potential solution at this point. These farm-based communities provide a range of occupational possibilities that allow for people like Ben to engage in meaningful work and satisfying activities settings that provides him freedom within the confines of a safe, healthy and controlled environment.
But even within the seemingly insular world of autism, there is plenty of discord.
Some in the disability advocacy world feel that “community” living should be defined in a way that excludes things like the Agricultural Community model. It is depressingly ironic to find members of a population that are trying to gain acceptance being unwilling to accept others who are different, and have different opinions, from them.
Either way, the reality for the vast majority of our loved ones aging into adulthood with severe autism is bleak. Ben is in an excellent setting right now, but it is almost certain that when he ages out of his school district funding, he will not be receiving anything approaching the level of services he’s getting now. He will have a much less “happy” life, unless and until we can help create a new living situation that meets his needs and assures that he will continue to have a decent life, in the near future as well as after his parents are gone.
We have a long, long way to go. The light at the end of the tunnel is so dim it isn’t even visible. And we are not alone.
~
https://www.smashwords.com/books/view/361251
https://juggling-autism-the-chronicles-of-ben-royko.com/