After a week of highs I’m hitting a bit of a low this week.
UCLA, for all its fabulous sounding accolades and support, is not going to be for us.
Turns out that yes, Stink qualifies for a certain study involving focusing issues. But we were led to believe we’d have a real diagnosis of some sort for his school files. This was a big plus for us, considering diagnosing a kid with anything can cost thousands of dollars. Also, Stink wasn’t eligible for an IEP based on his social and academic performance. He’s doing well. It would have been nice to have paperwork in place should we need to pull some strings later on in his academic career and not go through this crazy testing again.
While Dom qualifies for a certain diagnosis to make him eligible for the study, this diagnosis is not complete. Turns out it was just enough testing to qualify him for the study. Given that this study is being funded by the NIH (National Institute for Health) I’m left with a yukky taste in my mouth. My thoughts go something like this: “You mean I’m going to drive my son one day/week for 8 weeks to UCLA to give him drugs (or maybe a sugar pill, depending on the luck of the draw) to help a big university get $?”
Sure, it could help Stink focus a bit more.
It could also kill his joy.
I’ve got a kid who loves life, has more friends than I can count, is doing amazing in school and loves his tics.
I’m thinking I’d be on drugs to give him medication at this time.
More later. It’s time to lick my wounds and start again on this long road to accepting that my kid tics. MY KID TICS. MY KID TICS! This drug could eliminate a bit of his focus issues and almost all of his tics, but I’m not willing to eliminate Stink’s soul in the process.
And so, we move ahead again. One step at a time. Thanks for being there for me.
Happily Ticked Off 
I’m kind of glad the whole medication thing didn’t work out. Stink is amazing just as he is from what i’ve seen. But I know where you’re at- I’ve been down and out for the last month or so. Our intake interview for the anxiety went great, my son is going to be “easy”, but when I mentioned also addressing the tics, they looked at me like I was speaking dinosaur. Should we even be navigating the medical establishment for a “cure”, or should we just let our mildly ticcing, amazing kids be? (But you know that’s not gonna happen!).
Keep your head up girl, Stink is great and he’s happy, so you must be doing something right 🙂
Opportunity cost = too high. Good call, A.
i get so frustrated on the various tourette facebook pages…..most that is posted is about meds and fixing it and it’s so refreshing to come to your page and find humor in life and have a child who loves life and is ok with being a little extraordinary. i wish kids who didn’t have “issues” had that same outlook. keep it up….you’re doing something right =o )
Andrea, I apologetically admit that I am new-ish to your blog and am not totally familiar with the background and circumstances that underly this post. But I am a parent and something of a walking syndrome (Asperger’s), and I am your newest & most admiring fan-reader-guy. Anyway, two things. First, as someone with Asperger’s and OCD, I will say that one metric for the severity of a disorder can be how much the disorder limits your life or shrinks your world. Asperger’s made it difficult for me to socialize, which imposed some limitations as this is a social world. OCD is a far more considerable adversary in the sense that it can reduce my world to a series of routines and rituals, IF I allow it to. If Stink is happy and his life is not shrinking as a result of his condition, that is rather wonderful news. Second, as a parent, I wanted to say that your instinct is right on the money here. If there is never a silver bullet medication that mitigates tics and somehow doesn’t transform a person’s soul in the process, Stink will have been taught, by your word and deed, to embrace that which makes him special. He’s lucky to have you.
My next comment will be pithy and humorous. Maybe even clever.