I finally got around to watching all the episodes on the internet. Lately I haven't been able to watch any evening TV show with any regularity, so this task has remained on my Franklin Planner's task list dutifully for the past few weeks.
Nicely done, PBS. I appreciated the honesty. I appreciated seeing no "recovered" kids. I appreciated the acknowledgement that we are at the tip of the iceberg of people with autism needing services. I appreciated the experts saying that yes, we know a lot more than we did, but there is still a ton that we don't know. I appreciated that they said that there is no one cause of autism. And I appreciated that there were no simple solutions offered, because those of us in the thick of it would confirm that nothing about diagnosing, researching, treating, and living with autism is simple.
One episode dealt with the lack of services for individuals with autism once they are over the age of 21. I will admit that while I am in a very positive place with our boy right now, this subject looms large and imposing. It's not even so much after 21 that worries me…it is what happens when Rob & I are gone. I say that I need to live to be about 120 years old, because I want T to have a full life, and if he lives to be 80 then I need to live to be 112 years old. I need to outlive him by just one day. That is the only way I will know that he's safe, that he's taken care of. We've put things in place – all the wills & Letters of Intent – but I still worry. And in this age of federal & state budget & service cuts, who can reassure me that he will have any services whatsoever?
My fear is that the numbers of people with autism will completely overwhelm the systems that are in place, and they will be seen as an impossible burden on society. If I spend too much time thinking about it, my heart actually goes into palpitations. So, I try to concentrate on today, tomorrow, and next week - maybe even next month. I know we need to have a vision for him, and it needs to be much more refined and honed than "I just want him to live as independently as possible and have a meaningful day and be a productive member of society…" No, it's going to have to be more than that. Because more and more, I'm beginning to believe there won't be anything for him. I am not usually pessimistic, but I think being overly optimistic at this point won't serve him well. We'll need to plan on having no help. And that way, if there are services in place, then it will be a pleasant surprise.
Communities are popping up here & there that are created for adults with developmental disabilities. They provide living space, work opportunities and supervision in an environment that caters to their needs. It has occurred to me that this sort of a place could be an option for our son. Those who advocate for inclusion are resistant to these communities, and I get that. But while I understand and support inclusion, I don't always believe that it works out best for absolutely everyone with developmental disabilities.
It's hard to look that far forward, especially when I've just tucked my little guy into bed…my little but growing guy that still requests "Goodnight Moon" and loves Baby Einstein, even though he turns 10 this summer.
I started this post writing my reaction to the PBS Autism Now series, and see where it took me? Well, the series got me thinking. These future issues are the ones that lay heavy on my heart, but it is a burden I carry without regret. This growing boy continues to amaze and inspire me, and Rob & I have done a pretty darn good job of putting our heads together and deciding what to do next – so far. I can't control the future that far out, but judging from how well T is doing, I do have faith that we will figure it out.