Monday, September 19, 2011

wasn't i supposed to get a manual with this thing?

On Friday we went to the Fragile X Clinic at the University of Iowa's Center for Development and Disabilities Clinic. To be completely honest, I was not very impressed. Not one person said the words "Fragile X" while speaking to us until 3:30pm, and our visit began at 8:00am. By 10am he had thrown his iPad twice, knocked over a desk, shoved several medical instruments off a table, and smacked me. 

We saw an audiologist, an education specialist, a psychologist, an occupational therapist, and a medical doctor. (I don't know why we didn't see a speech pathologist, as that's someone I thought I agreed to meet with, but oh well.) While they were all very nice and even helpful, I wish I could have felt like we were being handled by experts. At the very least the occupational therapist should have been well-versed in hyper-arousal. And perhaps she was, but she never mentioned it to me. When I asked her about the fact that Punkin had bit most of his fingernails off, she just shrugged. "He has chew tubes, but he doesn't always like to use them." She suggested a chewy bracelet that resembled a stretchy key chain. "Ok, great." Uh, no. He will eat that.

Apparently there's trouble brewing in his right ear, but he's otherwise healthy. He was also subjected to an IQ test. The psychologist let me give him Skittles every time he answered a question, though, and was one of the most positive people I have encountered in a long time. I don't know where she gets her happy pills, but they must be good stuff. We also talked about a picture schedule for home and she gave me some very simple advice that I feel embarrassed I haven't thought of myself. She suggested getting a binder and putting a picture schedule for each day on its own page in the binder. Then it's portable and he can see what's coming up in the week. Brilliant, brilliant, brilliant.

The most dramatic event to come out of our visit was from the medical doctor, who is a fragile-x know-it-all. She suggested, like another FXS doctor did three years ago, that we try Abilify in addition to his Ritalin to manage aggression and anxiety. It scares the poop out of me to give his little body something so strong. At the same time, it scares me not to at least try. I mean, the kid put his head through a window. He hits and kicks me nearly every day. He throws chairs and tables. He's pulled my curtain rod out of the wall three times. He's chewed his fingernails off. He is sweet and he's funny and he's made amazing progress. And he has no "off" switch.

So after all of that, I decided that a trip to Auntie's was in order. We drove home, threw some clothes in a bag, and took off for the weekend. It was just what we needed to relax and reorganize. One of the highlights of the trip was visiting the children's museum.

 That cup is just the right size to stop the fountain in the water room.
 A play space for younger kids.
 Super awesome car table.
 Making a pizza pie.
 This giant art room has a space for children to paint on the windows.
 We HAD to check out the bathrooms! It's a supersonic hand dryer.
 And my personal favorite, the Cadillac of elevators.

It was very nice going from the top picture (GET ME OUT OF THIS IQ TEST PLEASE AND THANK YOU) to the bottom picture (My red? My movie? I have a cookie?)

As for the Abilify, the doctor explained it like this: FMR-1, the protein that Punkin's body doesn't make, helps control this other really long word/chemical that I can't remember. The other chemical is like the gas pedal. Abilify is the brakes. It's been shown to be very effective in children with fragile x and children with autism. The side effects are plenty, though, so I'm putting everyone on high alert since he can't really communicate with me if there's something subtle wrong. We're going back in 6-8 weeks to check in with her and change things if needed. Here's praying for the best!


Karen Mayes said...

I'm sorry your visit to the Fragile X Clinic was less than great. Bummer. We are going to the Duke Fragile X Clinic at the end of the month. I am very nervous. I am hoping for a lot of answers and direction. I guess we'll see... Good luck with the medication. I have the same thinking as you do. Your son is adorable!

Kristiem10 said...

I was hoping it would have been better for you guys. I hope the Abilify works for Punkin. They say it is normally very helpful for Fx'ers. My Fx'er didn't do well with it, but he's a rarity, apparently.

Love the pic of him escaping the IQ test with his blanket. And I am glad you got some time with your sister.

Hugs to you!

Jennie said...

I love you so much. I will be anxious to hear if the Abilify works.

Kristin said...

Wow, that was a big visit! My son's K-2 school teacher showed us a lot of great tricks, including the binder with the schedule. Like you said, easy but effective. That's what we really need. You're doing a great job! BTW, that Children's Museum looks awesome. Where is that?

fragilemom said...

Love the child museum! We just got a FX clinic in our city, and are working on appointments for the kids. Can't wait to see how it goes, but probably won't be for a while since the wait list is quite long - like 6 months. I can wait.

Our kids' schools do the picture schedule too. I used to do and need to start it up again. I think we've been blessed in that our kids do pretty darn well with the 'fly by the seat of our pants' way of doing things around here. Good thing, cuz I don't do well with schedules. Oops.