Project Alex: The Brass Ring

So here’s a good place to start: What would we want for Alex if we could have anything at all?

Well, first of all, we’d get him to a higher degree of functionality and independence than we see right now. Presently he can prepare a few foods in the kitchen — hot dogs, mac and cheese, scrambled eggs, breakfast cereal — with varying levels of supervision. He’s a crackerjack heater-upper of leftovers in the microwave. It’s a fair start, but we’d love to see him more maneuverable in the kitchen, with a small library of simple things he can cook for himself.

And that goes for the rest of the house as well: Future Alex should be able to do his own laundry, keep himself clean, properly take his medication, and so on. The laundry bit should be no problem — he’s already very helpful on that front. He does a decent job in the shower, but there are other matters of personal hygiene that I don’t know how the hell to approach them. Trimming fingernails and toenails — that’s a big one. He just doesn’t have the coordination for it right now. It’s a surprisingly subtle art, positioning the little clipper precisely so, and then applying just the right amount of pressure. I can more easily imagine him preparing trout almondine than trimming his own toenails. Also a challenge: Getting the ideal amount of toothpaste on the toothbrush.

Medication is a significant issue as well. Obviously, this has to be done right. He’s off to a pretty good start — more than once, he has reminded us, his parents, that he has not taken his final pill, even coming out of his room after lights-out to rectify the oversight. He can pull apart his capsules, so that he might sprinkle the powder into his yogurt. (He can’t take capsules or non-chewable pills the traditional way, with water.) The daily patch he wears is a problem: Stripping the patch from its adhesive backing is semi-tricky even for me, and I guess he’ll have to start wearing it on his rib cage or something, because he would never be able to remove the patch from his own back.

Not that I think today’s medications and dosages will remain in place forever. They’ve changed before and they will change again. Alex will have to adjust.

But all of this — Alex’s dinner menu, what shampoo he’ll use, etc. — ducks the real question. Where will Alex live? What will his daily routine look like? What sort of supervision will he have? Right now it’s hard to imagine.

We’d love to see him in a group home. He’s got his own bedroom. A bus comes by to take him somewhere — a job, maybe (makework, to be sure), or some sort of daily activity. (Today’s Alex would be perfectly content watching Pixar movies all day and eating cheese sticks and salty snacks. He’s going to need motivation to get out there into the world.) That same bus takes him to the supermarket. He uses a debit card to buy food for himself, from an account refilled from a trust we’ve established for him. One or more diligent supervisors stop by periodically to make sure that the Alex train is fully on track.

He is happy every day.

Oh, and none of this requires every single red cent my wife and I have saved over the years, nor does it place too much responsibility on the shoulders of Alex’s younger sister.

I believe that about covers the waterfront. Totally doable, right?

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  1. Kurtis
    Posted November 6, 2014 at 1:59 pm | Permalink

    “Today’s Alex would be perfectly content watching Pixar movies all day and eating cheese sticks and salty snacks.” – He would get along well with my son. And me. He’d get along well with me.


  2. Posted November 10, 2014 at 7:29 pm | Permalink

    Alex, thanks for starting this. (And thanks to Matthew Baldwin for the pointer).

    What is the patch for? I mean, what medication is it? I’d love to hear more about the medical issues and how they are addressed.


  3. Posted November 10, 2014 at 7:33 pm | Permalink

    Ugh, you are Eric, not Alex. D’oh.


  4. Eric Berlin
    Posted November 10, 2014 at 9:08 pm | Permalink

    The Daytrana patch allows for slow release of the medication, which helps him maintain his focus… theoretically. (No, it does. You should see him on those rare days when we forget to put it on.) He’s also on two other drugs, one that also helps with symptoms of ADHD, and one to curb aggression, which is frequently a problem in Fragile X types.


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