Sometimes I feel so guilty I couldn't be more like our local super-advocate for people with autism, Sally Colletti.
A tireless fighter for people with autism (including her son), Sally continued to fight all during her fight with breast cancer.
What if Bil was her relative? Well, he'd be hooked up to all the right programs, he'd be making progress, there would be some kind of miracle.
Or not. I am no Sally Colletti. I am just....tired.
Superwoman I am not. Why do I feel guilty for feeling so tired sometimes? I even feel I've lost my way with this blog. It just isn't coming together for me.
Perhaps I need to start at the beginning. Like many middle aged people, I find that I sometimes am in a room and forget why I am there. I have to go back to the beginning so I can remember why I am where I am. And why.
So I will do that.
Flashback to oh, 40 years ago. I've graduated high school and am in college. A young man in one of my classes makes my acquaintance. We enjoy spending time together. More and more time together.
I go and meet his parents. We have Sunday dinner. Things don't go so great.
I have several strikes against me. One is being from New York City. Another is...well, it's because my father has epilepsy. This boy's father isn't too thrilled about that.
However, that father is holding a secret, a secret about his younger son. How ironic, that he dwells on my father's seizures, when he has a son who is disabled. In those days autism wasn't out in the open. When I finally find out, I'm not even sure I know what autism is. But it doesn't scare me.
We eventually marry. It isn't until years later that I do reading and find out just how many people run the other way when presented with a boyfriend with an "elephant in the room". Perhaps I didn't run because of my Dad. But some days I wish I could, and there is no shame for feeling that.
I've sure learned since then what autism is, and I know I won't find out until my mother in law passes on the true extent of what Bil is like, what he is made of. Right now everything is filtered through my mother in law. She is Bil's spokesperson. His communication device. His way of seeing the world.
So what happens when she leaves this plane of existence? Will Bil have his own breadcrumbs to find his way? How will be react to things when she isn't his buffer? When we don't know the right things to say or the right ways to say them? She's never written these things down. We will have no Bil Rosetta Stone.
I don't think Bil will take her eventual death well. (yes she isn't immortal, and in a way that is an elephant in the room of our lives. Not just ours but Bil's other two siblings.) He expects to be able to live in the room he's lived in so long forever. But there is no forever. The house will have to be sold. My mother in law won't talk about it. She still expects his siblings to take Bil in. We aren't going to. There is a huge generation gap between her perceptions and ours. We've promised to make sure he is cared for. But she hasn't done her part. Forgive me, but she hasn't. I know a couple of people with disabled adult children; I used to work with one. They moved their son into a "forever" housing situation young, when he had lots of time to adjust. Good thing, as her husband died earlier this year. My mother in law, on the other hand, won't let go. Isn't that a form of selfishness when you are in your 80's and declining health?
You see the true elephant in the room is this. Bil was on a housing list here in NYS called NY Cares. His name came up a couple of years ago. His Medicaid Service Coordinator approved of the possible placement. My mother in law wouldn't cooperate. We talked with her, we all did, we pleaded with her. And then we spoke to Sally Colletti. She started to give us good suggestions and then....breast cancer struck her life. We lost our way.
So what will happen when he can't get his way about where to live? Does he have a huge tantrum? Exactly what will happen? What are our options? With the NY budget cuts coming...what are our options?
Do the siblings have a right to their own lives?
Why do we keep going around and around with this?
Breadcrumbs, please. Someone. I feel like we've failed.