Susan's Blog

Tuesday, October 20, 2009

Choice Moments

Yesterday I gave a keynote at the Midwest Autism Conference in LaCrosse Wisconsin. It was one of the best conferences I ever attended, full of practical workshops and even more useful books. Some people came from as far away as Des Moines (5 hours), but I hear that out there, they don’t really notice the time spent in cars. I found that while I was in rural New Jersey last weekend for my wonderful amazing nephew’s wonderful amazing bar mitzvah, I was really taken with how much driving my sister has to do in a day just to get anywhere. I would never leave my house if I had to drive so much. One long run just to get to a Chili’s.

But that’s just me. And just me is what they paid to see at the LaCrosse conference. I enjoyed the talk, and the questions and mingling, as I always do. But the thing that gets me is that it’s me on that podium. Because no matter what I say, just being up there and listened to transforms me into Someone Who Knows. And that’s just not really the way it is. I always say, “Some of this talk is about what not to do, so…” it gets a laugh, but it is the truth. So much of my life with Nat has been trial and a great deal of error.

So much of my life with Nat has been about figuring out what he needs and how to ask for it. That is well documented. But there is also a dirty little secret (although I’m sure I’ve probably mentioned it once or a dozen times): I get really lazy and discouraged and sometimes I just want to give up and keep him home with me. Build that apartment in the basement with a kitchenette and hire someone to live with him and take him places for fun. And that person will sometimes not work out and I will get depressed about that and just decide it’s only us, in the end.

Oh, it’s not as bad as that. And it makes me sad to think of his life like that, but then again, it also makes me feel relieved. I could just chuck the entire state and federal system if I did that; one big F Y to the Bureaucratic Nightmare that is Post-22.

But I am sometimes a role model and so I can’t say that, can I? I’m supposed to tell you all that it will be okay. That it’s doable. That if you do this and that and then yell about this or that, someone will listen and eventually do the right thing.

I don’t know if that’s true! I don’t want to sell you all a bill of goods!! I don’t know what I’m doing half the time. It’s all so much guesswork and hoping I didn’t forget something or get it wrong.

Today I just want to keep him home with me, but that feels like prison. There’s got to be something better than that, but what if there isn’t?

And so there is. If you live in the moment, rather than in the long run.

I choose this moment, at my sweetness nephew’s bar mitzvah.


You may not be a role model, but I do consider you an authority, advocate, and a friend.

— added by Someone Said on Tuesday, October 20, 2009 at 10:05 pm

Wow-you do live in a bubble. Most parents I know drive an hour one way just to get their children to their ABA centers and then more driving for the OT, SLP, PT and so on.

— added by Anonymous on Wednesday, October 21, 2009 at 8:46 am

You're right, I don't know what it's like to live in a more rural or area because I live in a city. I do remember how difficult it was to travel through nightmarish city traffic to get Nat to all of his therapies, though!

— added by Susan Senator on Wednesday, October 21, 2009 at 10:06 am

WHAT?!?! You don't have all the answers? The gall!! Bill of goods, schmill of goods – we're all navigating without a compass, but your blog has been such an asset to my family, and you know you sent some people home from your talk with things to think about.

No offense to your basement, and I'm sure you could make it really cool, but Nat's out there living and coping, just like the rest of us – how awesome is that?

I'm totally with you on the crazy driving some folks do – living 2.5 miles from work is such a luxury.

— added by Anonymous on Wednesday, October 21, 2009 at 10:21 am

wow I hear you…Dylan is only in kindergarten and I'm already feeling like it would be better just to keep him home…for so many reasons….

— added by eileen on Wednesday, October 21, 2009 at 10:48 am

So right … never sure what to do, never sure if we should just stay home, just never sure. And so I take one hour at a time. And some of those hours are sweet. So thanks for reminding me not to live so far into the future.

— added by Brenda on Wednesday, October 21, 2009 at 3:23 pm

You know what Susan? Every single day, I open up your blog just to "see" you. Sometimes you make my heart sing.

— added by Kathleen on Wednesday, October 21, 2009 at 8:59 pm

Hi Susan,
Thanks for coming to La Crosse and for being part of our conference. I am very sorry that we didn't have a chance to show you more of our beautiful community.

But, come to think of it…you probably saw what is best: parents, teachers, therapists, medical folks, advocates, support people, all being and learning together. Thank you for being such a catalyst for reflection, learning, and action.

— added by Andrea Hansen on Friday, October 23, 2009 at 5:23 pm

That is a great picture of you both. Your face has a kind of deep, rare, incredible beauty.

— added by Anonymous on Tuesday, October 27, 2009 at 2:40 pm

Thanks for a beautiful post. I needed that today – to know someone else feels like "just keeping them home"…
I heard you speak at the Midwest Autism conference. Thank you so much for being there!

— added by Anonymous on Wednesday, October 28, 2009 at 4:18 pm

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