Wednesday, April 10, 2013

Therapy overload? - April 10, 2013

I've seen other parents write about their kids having therapy overload or burnout, but I truly didn't think we were there. After all, my kid loves her therapists. She's known almost all of them for a good part of her life. They're like family. They play with her - nothing is too terribly taxing yet (though sometimes her PT makes her do things she doesn't want, mostly it's just that she wants to swing and instead her PT needs some treadmill time first). We make the whole routine as fun as we can.

But I think we're hitting the wall.

For two weeks straight, when she'd walk into her speech therapist's room, she'd scream and cry and sign/say/use her talker to say "home." She'd kick and yell for a while after we left (speech therapy is my time and my husband's time to run to Target for 20 minutes - so exciting, and now there's even a new Starbucks in there, oooooh). This past week that behavior stopped.

But don't think that this means anything improved. Instead, this past week when we walked into her physical therapist's room, she flipped out. She screamed and howled at the loudest volume I have ever heard. She smashed me in the nose. She nearly broke my husband's glasses. She almost hurt herself a few times. She refused to communicate in any way, shape, or form. All I could eventually get out of her in the moment, with her talker, was "Sad." But that's her generic choice she uses when she's crying - we're trying to teach her variations in feelings, word-wise, but we're not there quite yet. Maybe she really was just sad, but I think there was a lot more going on. We had to drag her out without doing a therapy session (though it's been rescheduled).

In the car, once she'd calmed down a bit, she used her talker to say that she wanted to go to the farmer's market to buy fruit - echoing back to a discussion we'd had in the morning about our plans for the upcoming week. To me this indicated that since her routine was out of sorts during spring break, she thought that's where we were going and was upset that it was therapy time instead. (Today, two days later, she used her talker and verbal language to tell me that she wants to ride the bike and go outside with her PT. So I guess she's over whatever drama she was having, but in the moment it was very, very hard for all of us.) (Also, as an aside, when she finally went to the farmer's market with her daddy, she came home and said to me "I bought fruit." Which was very exciting, as you might imagine. But I digress.)

In light of all of this, we decided it was finally time to leave the therapist who works with us in all things AAC. It absolutely breaks my heart that we decided this - the therapist herself is fine, but it takes an hour to get there and an hour to get home, and there's usually traffic which not only adds time but also stress to my husband (who is the driver in the family). So that was two hours of travel for a 45 minute appointment (which started out at an hour until Medicaid messed around with codes and billing...). We'd also been pulling the kid out of school early once a week in order to make it to the appointment on time - something we knew all along we wouldn't be comfortable doing when she started kindergarten in August.

At this point, I feel like I've learned a lot in how to use and program her device and she's figured out how to use it very well. I'm immersing myself in the tips and tricks provided by PRC and by Facebook pages of AAC experts, and I have the PRC rep out there available for questions and to help talk to the new school's staff. I hate leaping without a net (no specific therapist for the device), but I was starting to not see as much of a benefit as I did in the beginning - and unfortunately the benefits I did see didn't outweigh the problems with the distance. Before we left for the final session, the kid used her talker to tell us the name of her therapist and "speech therapist" before waving her hands adamantly and saying "home." There was no mistaking what she was saying. (She did go on to have an amazing session, and I cried a bit when we explained the situation and had to say goodbye, but it otherwise went very well.)

We're only doing OT alternating weeks, and it's only a half hour each time, and so far she hasn't freaked out on that. Horseback riding is a special treat - I don't think she has any idea that it's therapeutic.

Plus she gets PT, OT, and speech in school a few times a week and her teachers are all always trying to help her succeed in non-specific but therapeutic ways. And then of course me and my husband...

That is a lot of therapy. Yes.

The progress she's making in therapy is astounding - I'm not willing to drop anyone else from her routine at this time, though three of the other therapies are only 5-20 minutes from home at most and while hippotherapy takes longer to get to, we go with friends, we have pizza every week, and it has very unique and specific benefits that I see each and every time we go. (And the fact that my kid is telling me knock knock jokes and giving me details about her day and telling me she wants the "green swing" means that the drive for the AAC therapy was beyond worth it - if the practice was closer, we might have continued.) But I can see that she's getting sick of it and starting to resist. We'll work on it. We'll figure something out. Her summer camp is inclusive but doesn't include specific therapies (school does) so she'll get a bit of a break before she starts kindergarten in August.

If you're a special needs parent who found my blog (I think I'll probably link this one up on the Love That Max linkup this weekend), have you experienced therapy burnout with your kid? How did you handle it? And please, stay a bit - say hi! Check out some of my other entries! Point me to your blog! I love comments! (I have them filtered just to weed out spammers.)

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