Wednesday, April 22, 2015

Long Time, No Post

You know, I felt like things were sort of winding down. Like, without trachs, and with Leaf's g-tube on it's way out (well, ok, out this summer, but it hasn't really been used since September), that there wasn't much else to write about on this crazy journey of ours, because things were going to be "normal," or at least something approaching normal.

Except....they're not.

There are still therapies. Still IEPs (and we've added in regular behavior check-ins for Acorn with the principal and his teacher). There are still people who don't get how much work we put in every day to have Acorn be as close to fitting in as he is (people who think, "he's so close, if you just did more with him, he'd be fine.") if fitting in is the be-all end-all of what someone needs to be successful in their lives.

Leaf is moving from her daycare in June, to a school-based preschool (which will be part time this fall, with a few hours in the special ed preschool). Daycare is unable (or unwilling) to move her into their preschool class with kids her own age, because they can't keep track of her there. Frankly, we get a lot of complaints about how she sneaks out of the current room, with 2 adults and 8 kids. And weekly reports that her feeding tube needs to be seen by a doctor (it looks amazing, actually - a little leaking is normal, a little irritation is sometimes expected, so I don't know what their issue is). And they've been asking us to help figure out how to keep her from pulling her hair....because, you know, we're child psychologists, and no one there knows anything about how kids behave.

Leaf is talking too, though much of it is scripted and repeating things she's heard. Still...we get sentences, at appropriate times, with appropriate meanings. After all our work to get her a communication device, she doesn't need it at all, and Acorn is using hers, because the approval for his is still in progress.

Acorn, too, has made huge strides. He says hi and bye to people. He signs, "May I leave please" to be excused from the dinner table. He can, with prompts, go into his closet, pick out a shirt, put it on, pick out and put on clean underwear and pants and socks, and find his shoes and put them on.

Speaking of underwear....Acorn is, finally, by and large, potty trained, and more and more independent about going (instead of needing to be told to go) every day....including going in stores and at therapy and other public bathrooms, which was unthinkable 2 years ago. We recently discovered he had a UTI because he went on the floor, with a horrified look on his face - he hadn't gone on the floor in a couple of months, and was normally not horrified by it, but just sort of "oh well" before.

So...yeah. There's still a lot going on. There's still stuff to work out. Less complicated? Maybe...but mostly just differently complicated.