I've had this blog since Janey was three and first diagnosed. Now she is 19---hard to believe. That's a lot of World Autism Awareness Days under our belts. I was thinking today how my awareness wishes for the general public have changed since she became an adult.
First of all, there's just that---she's an adult. There seems to be thought out there that autism is something for children. I am not sure what people think happens to those children with autism---upon turning 18, they are suddenly no longer autistic? They just somehow disappear? No---they are still around, still autistic, still in need of services and help.
I remember thinking when Janey was getting close to an adult that I wanted to be sure to keep writing about her, to help in my small way to raise awareness of autistic adults. But as you might have noticed, I write far less than I used to. That is tied into something else I'd like to make people aware of. As the years go by, there is less new news. I might be negative and say there is less hope---but that's not really it. There is less urgency, somehow, to DO something, to FIX something. That is an awareness that doesn't need a special day for us to arrive at. If there is something Janey isn't doing at this point, it's unlikely she will be doing it in the future. And that's okay.
My father asked me something the other day that made me think. He said "You must sometimes have some sadness and regret over things that Janey will never do". And I realized---I don't. I don't think a lot about what Janey won't be able to do. What comes into my head often is the phrase "That's not her path". It's like how I don't regret that I can't fly, or that I'm not an astronaut, or a world class figure skater. I was never going to be or do those things. I don't regret what was not my path, and I don't really feel regret for Janey that she's not going to do things that were never her path---live on her own, get a job, get a high school diploma, go to college. She has her own path. That's something I'd like to make people aware of---that everyone has their own path, their own way through life, and we don't all need to have the same milestones along the way.
Lately, much of our life is bureaucracy, the endless series of obstacles to overcome and hoops to jump through to get Janey what she needs as an adult. THERE'S something I wish people were more aware of---how hard it is to get even the smallest amount of help for people like Janey, except for school. For example, we are working on registering her for services when she's 22. She is 19 now, so it might seem early to start, but believe me---it's not. First, we had to do an endless form and send in a huge amount of paperwork to prove there was a need for her to get adult services. Then, we got requests to send even more---more reports, more proof of her autism, more IEPs, things like that. THEN we got assigned a worker, and we took Janey to meet her. The next day, I did many hours worth of phone interviews about Janey's development and current level of functioning. You might think all that would be enough. But of course not. The worker told us we need a letter from her psychiatrist outlining all the reasons that Janey meets the definition of autism---despite her being diagnosed as such at least 3 times in the paperwork we already sent. We are working on getting that letter, but getting no response from her psychiatrist at all. Once we get that letter, if we ever do, finally she is formally put in to MAYBE get services---all this is just part of the application. Once she is approved (and I would certainly hope she will get approved, but who knows?), we get assigned ANOTHER worker and we start trying to figure out if there are actually any programs out there for her (which it is very possible there won't be, from what I hear),
My boys both went to college, and got good financial aid, and I swear that was about 10 times easier to apply for than all this is. You could spend 5 minutes with Janey and know she needs lifelong services. Tony and I are fairly good at paperwork, and we are about out of our minds at this point. What in the world would someone who might not read well or speak English well do to get this kind of help for their child? WHY is it so hard?
And this is just ONE of the tasks of adulthood. We also had to apply for Social Security for Janey, which wasn't quite as complicated but took over a year to be approved, and we had to get guardianship for her, which was another nightmare of complexity and is something we have to repeat EVERY YEAR. I don't think it has to be this hard. I think there's an impression out there, and in fact people have said to me that they think people with autism "get all kinds of help and services", like you get the diagnosis and suddenly help and money and respite and programs are all provided in abundance. I'd like people to be aware that most certainly is not the case.
However, of everything I wish people could be aware of, the biggest is this---Janey is an amazing person. She is our joy. She loves so many things---good food, good music, good (in her eyes anyway) videos and movies. She has a smile that is so wonderful it's impossible to describe if you haven't seen it. She's funny and beautiful and in her own way, very smart. You might look at the bare facts about her---a recorded IQ of 30, very little useful speech, not fully toilet trained, unable to read or write---and picture a tragedy. The tragedy to me is that anyone would think that. She is everything to us, and she deserves a full and interesting life as much as anyone does.
I wish sometimes everyone who is responsible for any kind of public policy that affects the disabled could meet Janey. And meet all the other amazing people out there that I've met because of Janey---I wish they could see for themselves the actual people they are making decisions for. Maybe I'm a cockeyed optimist, but I think if they could, they would do all they could to make the world a place where Janey and all the others like her could not just survive, but thrive.
No comments:
Post a Comment