Susan's Blog

Wednesday, September 30, 2009

My FaNATasy

When our kids have disabilities, on the one hand we believe that fantasy, dreams, and plans are no longer possible. Special classrooms bump out exclusive preschools, the would-be football hero, even the class clown, is not to be. Prestigious colleges shrink away, perfect marriage — busted before it was even foreseen in Heaven.

Are you depressed yet?

The thing is, we should never have those pictures in our heads in the first place. Who says that this is what we get? Whoever made that brochure sending us to Italy (you know, the trip where you end up, by accident, in Holland), lied. It was all a marketing ploy, to get you to buy fancy Italian strollers, to match your fancy imported car, to go with your Ivy League life. Your baby is supposed to match your carefully groomed self, your therapy-smoothed insides, your product-smooth hair. Our babies, on the contrary, are real life. Products of complicated blood and tissue and sophisticated neural circuitries — it’s a wonder it comes out “right” any time!

It truly is a wonder, that we have life at all. We forget, living in our beautiful homes, that nature is red in tooth and claw. Primal. Raw. Remember your child’s birth? Enough said.

I’m not usually this cynical. So, maybe my fantasies have to become fanatasies, in other words, dreams shaped by what Nat is like. Okay, so no grandchildren from Nat. Yes, tragic. The world could use some extremely cute little blond Nat babies (oh, no, tearing up) but — not every adult reproduces, okay? And as for Ivy League: well, that’s not all it’s cracked up to be, either. Besides, how many super-educated kids come back home to live with their parents these days? You shouldn’t know from it.

My latest fanatasy looks more and more like it could fall into place, knock wood. (Take it from me, the descendant of shtetl-dwellers who ran for their lives during one pogrom or another. We autism parents always should keep a little wood handy, for when things are going well.) Today I met with a couple who founded an organization 20 years ago, that helps disabled adults put together housing. These are small group homes with a couple of live-in staff (not 24/7, but enough).

The organization’s staff and resident turnover rate is low. Live-ins are often promoted to house managers. The set up is similar to Nat’s current House, and also the way his school does their adult housing. I am becoming fairly conversant in adult service lingo, which makes this process all the better.

This is the third set-up I have discovered, right in my area. Group homes in urban locations (my town is urban-ish, with access to public transportation and very walkable, interesting streets) so that the residents can get to jobs, day programs, volunteer situations, all without relying on paid transportation.

My fanatasy is that Nat would be able to get a job similar to one of the 5 (five!) jobs he now has. So far he has learned to do cafeteria-serving; janitorial stuff; making boxes; delivering messages; and filling orders for classrooms, as well as his volunteer work with Meals on Wheels. My Natty is a Nat-of-all-trades, at least of trades that many 19-year-olds find for themselves, disabled or non.

The best part is, Nat loves to work. Nat does not even know that his work is “beneath” him. Therefore, it is not. And as for housing, I have been dreaming, as of today, that some of his social group friends could also live in one of these homes along with him! Imagine how happy he would be, to get to live with his buds, just like many young men who get a house together somewhere after college.

What does an adult need to be happy, to live a life and get along in the world? A home, friends, work or other productive activities. There is no need to see Nat’s future as a nightmare, because all that other stuff is just a dream for all of us anyway.


What does an adult need to be happy, or what does Nat need to be happy?

Seems like everyone would like going to birthday parties – well not Jared, and not me, if I'm being really honest. A kicking party with a huge waterslide sounds good in theory, but I've got to come to grips that too much commotion makes Jared withdraw and become anxious. Birthday cake is great, divine even, but no cake is going to make it easier for my kid to be able to participate in a lot of birthday party activity. Regardless of whether or not I believe he should enjoy these gatherings, he doesn't, and would much prefer a small group visit versus all the hoopla (and you know I'm as big fan of hoopla).

All parents need to accept certain realities about their kids, it's just the list may (or may not) be longer with our kids.

I'm off in search of a little hoopla. Lisa

— added by Anonymous on Wednesday, September 30, 2009 at 5:57 pm

Lovely Susan, yes. I think as an adult, like a child, we need to belong. Nat has so many communities that he belongs to, thus his life is rich. I don't think a parent could want more than that, to have their child belong to a community – of work, of home, of friends. Lovely dream becoming a reality.

— added by Penny on Wednesday, September 30, 2009 at 8:23 pm

Susan, if anyone can pull this off, it's you. Nat is so lucky to have you. Good luck, and keep plugging away at this dream, because when you want something bad enough you can make it a reality. I'm keeping this idea in the back of my mind too. I'll be interested in hearing your progress on this. My niece, who works with older residential kids has already expressed an interest in running a house if I go this route. Hopefully she won't be burnt out by then. Good luck!

— added by Candy on Wednesday, September 30, 2009 at 11:05 pm

Have you ever heard of Dr. Wetherby? She is one of the people that developed the SCERTS program that Dylan will be participating in at school. Once I heard her say something like "my goal is to have all autistic people be taxpayers" That just stuck in my mind as being so cool:)

— added by eileen on Thursday, October 1, 2009 at 11:54 am

Lisa — Nat used to dislike parties, too. I hated when we would get a (rare) birthday party invitation for him. Go and suffer or don't go and suffer? But — things do change, sometimes…
Penny — 🙂
Candy — you can make it happen, I know it!

Eileen — Sounds good to me!

— added by Susan Senator on Thursday, October 1, 2009 at 12:18 pm

Defining "success" is certainly a problem in our society. We've defined it so narrowly and by external trappings. Clearly, an Ivy League education would not be the right thing for many, say, Van Gogh, for example. So why do we get trapped in that dream? Cultural, absolutely.
You definitely have a handle on finding out what will be the best for your child and what will make him happy. I am so excited by that vision of him being connected to his work, to his community, and to his friends. I could not ask for more myself. Love.

— added by Brenda on Saturday, October 3, 2009 at 9:07 am

A wonderful faNATasy, Sue!

— added by Donna on Saturday, October 3, 2009 at 10:56 am

So true Susan, I think people in the typical world fail to realize that our kids can do soo mouch more than people think they can and they can have likes and dislikes. My son Mark recently has been listening to my ipod (I can say I got the idea from you with Nat) and it's so neat to hear him say, I like that song. It shows me that there he can make choices without me choosing for him all the time. And to think, my father in law once said to me, Mark is really hard to love you know?? Believe me I had to hold back what I wanted to say. All I can say is that I love when Mark is around people who really understand him, it's all I ever want for him is to be around the people who get it….

— added by Valerie from Chicago on Tuesday, October 6, 2009 at 12:49 pm