July 5, 2012

Autism FAIL

One of the best things that ever happened to me and Bubba  in regards to his Autism was the introduction of a certain preschool teacher, Karen Duggan (yes, I'm using her real name as I can never thank her enough for her total awesomeness). While I had resigned myself to my role as "mom of a disabled kid" and having to do most things for Bubba, she recognized that he was capable of much more than I was giving him credit for and pushed us both beyond what I would have thought either of us could handle. I learned that I can have expectations for Bubba in spite of the fact that he has Autism, and it's okay for me to push him to reach those expectations. And he has done amazing. He went from being a 4 year old in diapers who couldn't speak a word and needed constant direction and a very rigid schedule to being a happy, verbose 11 year old who has been accepted in the gifted program at his school. This is not solely due to his (amazing) preschool teacher. This has been a team effort that involved therapists, teachers, aides and family, but I think having the building blocks put into place thanks to what I learned from Teacher Karen have made a huge difference.

(*Editor's note: As I've said countless times, every Autistic kid is different and the expectations we've set for Bubba won't always be realistic for other Autistic kids.*)

Last summer, we were too busy moving to do much of anything, but the year before Bubba got to attend his second year at camp--this time without either myself or his Daddy. He did alright. We got a couple of phone calls during the week where he asked to come home. It wasn't that he couldn't handle it or that he was misbehaving. The problem? He was bored. This year, when I heard about all the fun things they had scheduled for the elementary kids at Camp Goddard, I thought, perfect! Lots of kids from church were going and they all said it was so fun--swimming, archery, museums--and it was highly structured so I thought it sounded like a great fit for Bubba.

As I checked Bubba and Sassy in on Monday morning (he got to go with his sissy--how fun!), I made sure to make the rounds to all the counselors in his cabin, letting them know what to expect from Bubba. How he gets upset if he loses, how he might throw a fit if things don't go his way. The best solution? Distraction. And while other parents were informing the nurse of which medications their kids needed in case of an emergency, my emergency kit for Bubba included brand new books. If distraction didn't work and Bubba was causing problems, I advised sending him to the nurse for some quiet reading time (his 2nd favorite activity, behind video games). Was I nervous sending him off to camp for 5 days? Of course. I'm always nervous sending him anywhere without me, but I kept reminding myself of all the fun, structured activities they had planned and I was sure he was going to do fine.

*sigh* I so hate to be wrong.

It seems that in my quest to make sure Bubba is independent and treated like every other kid, I sometimes forget that he isn't like every other kid. He is different; he thinks differently, he acts differently, he interprets the world around him differently. If MC and I had been in this mind set when we were looking into camp, we would've realized that the only people who are truly capable of helping Bubba navigate new situations are the two of us. One of us should have gone to camp with him.

But we didn't. And I got a call at 6:30pm on Tuesday night--about 34 hours after the whole train of buses and vans pulled away from the church building and heading out for camp--that I needed to come and pick Bubba up. Something had set him off and he was being disruptive. He was fighting with the counselors, refusing to behave, yelling and screaming--generally acting as an overstimulated Autistic kid. Knowing Bubba as I do, I am sure that the thing that set him off was just the last straw and not the real reason behind his meltdown but it doesn't matter. The fact is, while the people running the camp are an amazing group of people, they were not equipped to deal with Bubba's tantrum.

So MC and I scarfed down the burgers he had just finished grilling, nixed our date night plans and called to make arrangements for Howdy to spend the night with a friend. Then we set off on the 2 1/2 hour drive to pick up Bubba from camp in Oklahoma. The whole way there, I yo-yo'd between guilt over having sent Bubba to camp when he wasn't ready, guilt over anyone else having to deal with him, and frustration that Bubba seems to do so well and yet he couldn't handle camp (I didn't say any of these were necessarily well-founded, it's just what I was feeling).

As soon as Bubba heard we were coming, he calmed down and behaved, and by the time we pulled in, he had rejoined the activities and was enjoying a s'more. We visited with his counselors and the camp director for 5 minutes or so and then set off on the drive home. Bubba was sound asleep in the back seat before we made it to the freeway. We drove about 315 miles round trip, getting back home at midnight. The good news was we were out late enough to avoid any rush hour traffic, and I still got to spend time with MC, even if it wasn't at the movie like we had planned.

There's a fine line between wanting your children to live up to your expectations and knowing what their limitations are, and sometimes I struggle with finding that line. Our first instinct was to come up with some kind of punishment for Bubba for not behaving at camp but then we had to remind ourselves that Bubba is not like other kids. It's a testament to how far he's come and how much he's improved that we have to keep reminding ourselves that he isn't a typical kid. And so life around here is always anything but typical.

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