Monday, August 3, 2009

It's a Trip

I somehow meant to write this post while we were in Tampa, when everything was fresh in my mind. I couldn't have posted it then...not for less than $10 in internet access fees anyway...but I thought some reflection was in order. Now, you'll all be spared my detailed reflection because it seems like so long ago.

On June 22nd, we left for Tampa, Florida to attend the annual Friends convention. Friends is the short name for the National Association of Young People Who Stutter, so our attendance was mostly for Smunch. It seemed like maybe he was getting old enough to want to meet other people who speak more like he does. We were wrong, but that was our logic.

It also seemed like Florida would be a pretty good place to go. The best man from our wedding lives there as do some old family friends of Daddy's. And Disney World is there. Despite living in relatively close proximity to Disneyland, we've never been there. If you're going to do it, do it big, right? Of course, Florida in late July is hardly recommendable, but what the heck.

We arrived late that night, without any luggage because although we'd barely made our connecting flight in Dallas, our suitcases hadn't made it at all. We stopped at Walgreens for toothbrushes and $2 T-shirts to sleep in, checked into the hotel, ordered a pizza and went to sleep only to be awoken at 3am by the front desk calling to tell us our luggage had arrived. Uh, thanks.

In the morning, we discovered that the outdoors is alive with little lizards and geckos and the trees are all dripping with Spanish moss (pictured at the top). I also learned that epiphytes (air plants) seem to be native to Florida and live in all sorts of trees in the hotel parking lot. Cool.And that's about the extent of the outdoors we saw in Tampa...well, that and a couple of trips to the pool. It was a convention, after all.The rest of the time was spent indoors, at the Embassy Suites at the University of South Florida (USF)......where they have a super fun-to-ride glass elevator.Seriously. Who needs Disney World?

The convention wasn't quite what we'd expected, but in a lot of ways, it was so much more. We were unsure what we'd do with Mam while we were there. You had to be six to join in the kids' activities (didn't matter if you stuttered or not) and she's not quite five and a half yet. Turns out, no one really cared if she joined the other kids or not, so she did. Both days she and Smunch went merrily on their way to their own activities while Daddy and I sat through talks.

There's a significant aspect of "support group" to the Friends organization. And that's good. It is obviously fantastic for a lot of the teenagers there. They have friends who they look forward to meeting up with every year. I'm not sure what it did for Smunch. I'm not even sure what he was doing most of the time...only that he was in a room playing games with a bunch of Speech and Language grad students. Daddy and I, however, learned far more than I ever thought we would.We've done a lot of reading about stuttering. I feel like I know the current thinking on it and I wasn't wrong. Much of what we heard confirmed that we had a clue. But then there was a talk about making your IEP (Individual Education Plan) work for your child. It was done by the Stuttering Program Coordinator from the Children's Hospital of Philadelphia, Joe Donaher and it was absolutely brilliant! I left that talk with a completely new view on IEPs for stuttering and feeling very grateful.

To be honest, I never paid much attention to the goals set in Gavin's IEPs. I knew they were mostly unreasonable and not easy to measure. I didn't care if he never met them. Acheiving a certain percentage of fluency or learning to use certain speech tools (which general work great for about a week and then fail Smunch completely) are totally ridiculous goals for him to have. But goals such as participating in a class play, volunteering answers in class, calling someone on the phone...those are totally appropriate and may help him get over any fears he's got about doing those things. I wish I'd thought of these things earlier. I don't imagine many school-based speech therapists are going to come up with them.

We heard a talk from Dr. Gerald Maguire a member of the Stuttering Research Group at U.C. Irvine and also a person who stutters. He's involved in clinical trials of drugs that may reduce stuttering. I've been following some of his studies for a while now. They're interesting, but far from complete. He talked about the pathways and such involved in stuttering, so it was very educational, even if it wasn't exactly information I could put to work for Smunch right away.

The third memorable session was one where some of the teenagers addressed the parents with things they wish they could have told their parents earlier. There were a lot of tears and it was heartbreaking as well as eye-opening. Being parents of one of the youngest attendees, I felt like we could get a lot of instructional guidance from these young people who struggle so much with their speech, even though Smunch's struggles aren't nearly so severe right now. First and foremost, it turns out, kids don't like to be told to "use your tools" when they're speaking. They just want to be heard without their parents listening to how they're saying it.

That's hard. After several years of going to speech therapy and paying for speech therapy, you really want to make the most of whatever your child is learning there. The therapists tell you to practice at home, to use gentle reminders to use their tools. Obviously, it does a lot more damage to some of these kids than you might expect.

But it's hard. It's hard not to tell Smunch to use his tools (although I've stopped completely since the convention). I really want to hear what he has to say and I don't care if he stutters when he stays it, but sometimes I can't understand him and that's really frustrating for both of us. I hate making him repeat himself. I often try to blame my own inattentiveness when I ask to to say something again. At least half the time, my inattentiveness is the culprit anyway. But not always.

So, that's the story. I don't know that Smunch made any friends. Having his sister there (who did make friends, of course) probably didn't help much with that. I don't know that he identified with these kids who stutter. He knows he's one of them, but in some ways, he's not. he hasn't yet been particularly damaged by his stuttering. He's not made fun of. He raises his hand in class regardless. He's just a kid. A kid who happens to have trouble speaking.But I feel better about everything. I feel like I have some things to work on that don't involve frustrating my son or asking for things he can't deliver. I know the majority of children don't face this kind of issue, but now I also know that there are many children who face far worse issues with their speech. He's going to be O.K.

Now, off to Disney World!

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