Wednesday, September 28, 2011

update

So Punkin's been taking Abilify for a week now and I really can't say I'm seeing any effects except for a bit of an increased appetite, which is scary to be honest. I cannot afford those kinds of grocery bills. I have noticed that when his Ritalin wears off or when it's time for another dose, it doesn't seem as drastic of a letdown as before. One of my biggest hopes, though, is that these little hands will heal. And if you have any suggestions for how to keep him from chewing them, that would be awesome. It's not just a sensory need, it's driven by anxiety. He's given a replacement item to chew on, but it just isn't working.


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!

Wednesday, September 14, 2011

it's like that mouse and cookie book -- you end up back in the same place you started

So I opened the windows this evening. Well, let me back up. We came home and it smelled like salsa. I don't know if Punkin cared, but I did. And since I'm out of those wallflower thingies from Bath and Body Works, my best option was to open the giant window. Normally I don't open the windows for fear I may inhale something too earthly and aggravate my asthma, but I really wanted some fresh air. Once I opened the window I was worried about bugs, naturally, seeing as how dirt comes right up to the window ledge. So I sprayed some all- natural bug spray, which reeks highly of lemon --not the good lemon, the chemically lemon. Then I picked up a few random pieces of Punkin's clothing, took them to his room, came back, and saw him carefully considering climbing out of the giant window -- in nothing but his underpants -- and into oncoming traffic. What about the screen you ask? Oh, that was nothing; it's "oh der."  I shut the window and immediately needed to open it again because of the bug spray smell. Should have stuck with salsa.

Not thirty seconds later, Opa showed up with an item that may either save my sanity or break me entirely -- a rope. I know, right? It's my defense against him stealing my laptop power cords from the basket in the living room to use as a lasso. Of course I could hide my cords somewhere else, but I don't wanna.


Sunday, September 11, 2011

wake up time!





For a while there, mornings were really tough. Punkin woke up full-speed ahead and I, well, did not. I love our new routine now that he crawls into bed with me and the iPad until "EAT TIME!". Did I mention there's a Build a Train app? Because there's a Build a Train app and it's as awesome as it sounds.

Wednesday, September 7, 2011

it wasn't even my idea

Punkin and I tagged along with Oma while she went grocery shopping on Saturday. He chose, of course, to sit in the race car cart. Do your stores have these contraptions? They are terribly difficult to maneuver through the aisles; one woman we nearly ran into (literally) told us she once took out an entire endcap with one of those things.

So anyway, he's in the cart and he finds a naked Barbie doll and a walkie talkie. He was fascinated with the Barbie for nearly an hour, but agreed to leave it with the Lost and Found at the store. When we returned to Oma and Opa's house, I dug out my old dolls and he promptly had them all go swimming before it was "Eat time!" You guys, it was awesome. Not just the play skills, the Barbie part.

He was very curious about their shoes, but overall preferred them in the nude. Can't win 'em all.

Sunday, September 4, 2011

our neighbors love us

You might notice two things about this picture, besides the fact that Punkin is standing on couch waiting for the blue semi to come back: he is wearing a swimming suit and the curtains are missing. The curtains left about a month ago after he ripped them out of the wall for the third time. I haven't figured out the best solution yet. And the suit? Well, that's just his uniform. The more he wears it, the better his chances of swimming, apparently.

So Friday afternoon I did my usual thing and took a shower while Punkin watched cartoons on his iPad (thank you, thank you, thank you, from the bottom of my heart for the iPad, mysterious gifter).

I took a little longer than usual, which you know led to trouble or I wouldn't mention it, but I really needed to shave my legs. For the good of man, it had to be done. So I turn the water off and I hear Punkin burst through the door, "Mom! My blanket's wet. Is wet!"

"Did you pee on your blanket?"

"Mmm Hmm." And he ran off.

Through clenched teeth, "Punkin MiddleName LastName, if you peed on that couch ...." And before I could step out of the shower enclosure, he was back. With two handfuls of poop. And not the kind that comes in one piece. Oh no. Not like the kind at the laundromat. The sticky kind.

"Okay, okay, okay. And we're dumping that in the toilet. And we're washing your hands. NO TOUCH POOP. YUCK. POOP IS YUCKY. GROSS. NO. NO TOUCH. And we're washing your hands again. And why not a third and a fourth time."

"I DONE!!"

"You will be done when I say you're done."

And once more for good measure. "Okay, you're done." We go and get new underwear and head to the living room, keep in mind that I'm still only wearing a towel, we have no curtains, and there's a stoplight outside our large window. "Now where's the poop?"

"Oh der." And he was right. It was right "oh der" on the windowsill. You guys, NONE of it was on the couch, which means he must have been mooning traffic, because I don't know how else you could accomplish that.

You know, when I was climbing into the shower before all of this happened I felt a little guilty for leaving Punkin every Friday night. But after wiping sticky, stinky poo off the windowsill and disinfecting my bathroom, I gladly looked at him and said, "You are SO someone else's problem for the next five hours."