Susan Senator

I don’t want to scare you or make you nauseous. But I’m going to go into the rabbit hole tonight (I’m also watching The Matrix with Ben and Ned), and take you with me if you want.  I’m going to ask you to face your child’s adulthood.

In terms of nuts and bolts technical autism adulthood information, I do not believe I am the go-to source. That kind of knowledge is not my forte; I’m not a big details person. But I am talking to people who are, who have the sharp minds to pull apart the messy clumps of information about adulthood issues — primarily housing and day programs. I want to give a plug to the friend who helped me today, because even though I am not ready to use her info specifically, I owe her and her organization at least that. So click on Autism Housing Pathways and donate something, anything, right now, before you continue reading this. AHP is going to be one of the premier places to learn about housing models, for all sorts of people up and down the Spectrum. And learning about how to put together a home, how to leverage whatever resources you’ve got as well as the three building blocks: SSI, Medicaid, and Section 8.

Piecing together an adult life for your autistic child is not going to be easy, especially given shrinking budgets. But the thing to know is, you must face it. Now. Even if your child is 6. You think about college, you can think about this. Right now it doesn’t seem like much fun, but that’s because you’re thinking, “Ew, if it’s not college, what is it? A life of van travel and decrepit, shoestring day programs? Mall walking and group dinners out at Bugaboo Creek?

Well, yes, maybe, but also, no. I’ve said this before, but it bears repeating. You have to get past how it all looks. First of all, physical appearance is always deceiving. It’s true but it isn’t the whole truth. Nat does all those things. But he is happy doing those things. He is happy. So who am I to say it is not a good life? Because it may look, at times, pitiful?

There is no adult in the world who is as cute as a child. So it is with autistic adults and autistic children. At some point, all children stretch out and pad out into greasy awkward teens and slowly morph into crusty adults. It’s not always pretty. This is perhaps a metaphor for adult disability. It may be hard to look at adult disability at first. I’m sorry, that is a possible truth. It is how we are engineered in this day and age — to be smooth, sleek, symmetric, etc. Non-stim. All those Ableist things.

It’s not good, but it is a possible bias that is there within you and so the sooner you face this malaise, the sooner you can get over it. The ugliness is within us, and it is not our disabled children at all.

So once you know this, once you get past the strangeness, awkwardness, and all the other DIS kind of stuff, you just have a guy, a person that you need to get to know. Luckily, if this is your own child, you have not only gotten to know him, you love him, and so you are already past the awkwardness of all the DIS-related stuff.

I used to wish that people could know Nat just the way I knew him so that they would not think his behavior, his presentation, was ugly. That’s why I started writing. It was pure Mother Selfishness. I wanted the world to love Nat, not revile him.

So let’s say you are more highly evolved than me, and you are past all of that stuff. So then what’s the problem with facing that they are going to be adults with lots of challenges? You already have that in their childhood. Is the problem that you have to face that they may not go to a traditional 4-year college, live alone, work 40 hours a week, have a family?

I’m asking because I’m so different now, I can’t even remember!

Yes, I can. I still feel sad driving away from Nat’s group home! Even though I had a big hand in creating it!

But for the most part it has become so easy to just face it and go full steam ahead.

You, my friend, must plan. You must face different scenarios. You must deal with it. Emotionally, financially (start saving now, not in his name, make a special needs trust fund), and informationally. Bite off whatever tiny chunks you can, chew them, let them digest, leave them for a bit.

Then come back to your meal.

On the most selfish level, the most difficult part of having a child with a disability might just be that you have to face your own non-existence. Who the hell wants to do that?

But — need I say it? You, wonderful, lovely, unique you, are not going to live forever! Argh. I hate that.  And your child as an adult will need support one way or another. That is just a part of what his life will be.  The sooner you understand that you can and will deal with it, bite by bite, the better equipped you will be for that eventuality. And that, dear reader, is the best way you can parent and love your child.