Wow! Amazing Progress.

Climbing stairs two days
after we got home
Ethan's had a surprisingly great three weeks since we came home.  I mean surprisingly, as in "Wow! Look at what he can do now!" and great as in, "I can't believe he's still wearing his brace!"

Man he's firing on all cylinders.  Okay, maybe he's not firing on ALL cylinders.  His sleep cycle is still in the crapper.  But aside from that, he's been amazing to watch.

Let's start with the elephant in the room, his brace.  He's wearing it.  I can't put it any more plainly than that.  Yesterday, he wore it from 8 to 8.  The day before that he wore it most of the day, except for two periods when he asked to take it off and have a break.  Then he let us put it back on after 20 or 30 minutes.

Why is he wearing it?

The brace
It's a little bit of the anti-anxiety meds that he's still on, but only a little bit of those.  It's a part that he's not in school and not as active as a lot of kids, so I think it gets in his way less.  As Sarah pointed out, a big part is that the folks in Seattle did a great job making it for him and so far he doesn't have any red, rubbing or sore spots that we can see.  But most of the reason that the brace is working is that Ethan is working with us. He's mostly accepted the brace, he's not fighting it.  We still need to negotiate with him sometimes.  And when Ethan says he wants the brace off, then it comes off as long as he's not doing something that might throw his back out of whack.

We were all prepared for this to be a big, big challenge for Ethan, but he's handling it exceptionally well.

In other news, cognitively, Ethan is making a lot of visible and audible progress.  He's actually started occasionally using full sentences!  They're slow and he's got to think a some, but he's putting the words together!  Last week, we were all out at his psychiatrist appointment. Sarah and Ethan took the elevator up and Caleb ran up the stairs and was waiting for them when the doors opened. Caleb looked at Ethan, and said, "Wow.  How'd... you.. do. that?"  It was super cool.  Then last night, Sarah said, "I love you, Ethan." and Ethan said,  "I love you too." Which was maybe the second time he's done that, and was even more awesome-r.

We've also seen some signs that Ethan's problem solving abilities have increased.  The other day, Caleb wanted Ethan to stop playing the video game that he was into so that they could put in a different one that Sarah and Caleb could play, too.  Caleb asked Ethan if they could change games so that they could all share and play together.  Ethan stopped his game in mid-level and said, "okay." And allowed Caleb to make the change.  Sure, it's a small thing, but a few months ago Ethan just wouldn't have been able to stop and reason that through.

Also last night, while I was studying in the den, Ethan, Sarah, and Caleb came in.  Ethan had put on his sneakers and the backpack that he used to wear to school.  He came in and Sarah asked him where
he wanted to go and Ethan said, "School."  I wanted to dance and I wanted to cry.  It was so great.

So, what are we doing to support all of this growth?

I've got a couple of emails into his case manager at the school district looking for ways we can stretch his playground time.  I think the kids have gym before recess and snack time after recess.  I'd love to get Ethan into those loosely structured activities before or after the playground time that he already knows.

Unfortunately, Ethan's sleep cycle is pretty screwed up right now.  That's really impacting how often we get to the school for playground time, and it will probably continue for the next few weeks.  Ethan's been waking up early, like 4 or 5 in the morning.  Then he's tired and ready to fall asleep where he's standing by 9:30, when it's time to go to the playground.

Sleep has always been a challenge for Ethan.  But it's worse at the moment because we're weaning him off of his pain meds and the stronger anti-anxiety meds that he's been on, And that's making it hard for him.

I've also asked the school system if we can develop some afternoon options for him.  Hopefully, we'll be able to put something together over the next week or two so that Ethan has some other school options that meet his needs.

Don't get me wrong.  Ethan and the brace is an ongoing dance and constant negotiation.  And we've got a long, long way to go before Ethan will be ready for even a half-day back in school.  But I think Sarah and I are both stunned, so very pleasantly stunned, by how well he's doing.
Sleeping at the
school playground

 Why?  Why are we seeing all of this development now?  What's changed?

Sleeping at the
school playground
Sleeping when he should be at
the school playground
I don't know the answer to that.  The best part of an answer that I can come up with is that I think Ethan's been making slow progress over the last year.  But he's been so unstable emotionally that he couldn't express it and we couldn't see it.  Why is he more stable now?  It didn't happen overnight.  It's been a very slow process of improvement over the last 9 months. And, it's not over.  Ethan can still escalate and he does.  But they're less severe events than before and less frequent.

So we've got a lot of work to do yet. But we're completely thrilled with how he's doing and we're doing little happy dances as we go through the day.

By the way, Ethan is 1 1/4 inches taller than he was before the surgery. :-)


Patrice said…
So wonderful to read about great progress! Thanks for posting.