Monday, June 27, 2011
Punkin sat on the bleachers at the baseball game of the local minor league team, clapping and encouraging the players to "run!" as they made their way into the outfield to catch fly balls. He was by all accounts appropriate, calm, and mild-mannered; he even cuddled with my mom. Looking at him, no one would think that 40 minutes earlier he had put his head through the window in my parents' back door during a fit of rage.
Every summer we attend a baseball game and every summer I wonder why we attend a baseball game. This year I was hopeful that the third dose of Ritalin would help us all keep our sanity and be able to stay beyond the first inning.
As we muddled through dinner at Oma's before the game, trying to convince Punkin to finish his taco so he could have some much-desired strawberries, I wondered aloud to my mother about the possibility that he spit out his 3pm medication. When he threw his plate across the dining room, I said, "Ya, I'll go check the car for his pill when I'm done." I was sweeping up taco meat when he asked to go outside. "No, not right now. We will play outside later." This went on for several minutes, quite playfully, until he snapped.
"NO LATER!" And before I could stop him, he banged his head against the glass of the back door hard enough that it shattered. The panic I felt was less than the day he grabbed three of my mother's knives by the blade from her knife block and started running around the kitchen, but was slightly more than the day he ran out of the apartment and into the parking lot to fetch something from the car.
Now, Punkin is rather unpredictable sometimes. There are, however, a few surefire ways to send him over the edge. One of those ways is when something breaks. This is ironic, of course, because generally he is the one who does the breaking. So he was scared, sorry, and something was broken and could not be immediately repaired. And since he didn't know how to cope with any of his emotions, he became aggressive. Very aggressive. Which meant I had to restrain him before he broke something else. All the while I'm thinking, "Wow, this opens up an entire new list of things for me to worry about."
"I SORRY. A DOOR BROKEN. IS BROKEN. A FIX IT."
"I forgive you. Opa will fix the door. Let's calm down. No cry. No hit. It's okay."
"A DOOR'S BROKEN! I so sorry, Opa. Opa fixa da door. DOOR'S BROKEN!"
Oma called Opa, who reassured Punkin that he forgave him and would fix the door, but the kicking and the screaming the hitting continued for another five minutes until Oma looked at me and said, "Should we offer him some strawberries now or is that against our principles?"
"Forget principles," I whispered, "Do you have any Skittles?" And just like that, he stopped. Oma didn't have Skittles, but she had a popsicle. We calmed down outside, I found his pill from the afternoon under his booster seat and gave it to him, and he only yelled, "DOOR'S BROKEN!" about ten more times on the way to the game.
The game, by the way, where he behaved beautifully.
Wednesday, June 22, 2011
After asking around, I called a popular pediatric group and asked if anyone fit the bill. (I didn't include the part about being mean.) It turns out that there was a doctor there who not only knew more about fragile x than its name, but had other patients with the disability and had recently attended a conference on the syndrome.
When we went to see him a few weeks ago, I was reminded of how lucky we are to have him in our lives. He recently moved to his own practice, and Punkin flat-out refused to go in the exam room painted with a jungle scene. He motioned towards the other room, they obliged, and he happily sat and tore paper in the ABC room instead.
It was a routine med check for his ADHD, and even though he really only needed to speak to me, he made sure to greet Punkin first, ask him questions, and praise him for good behavior. My main concern was not Punkin's dose of Ritalin, rather it was the time before and after I was able to administer it. He understood immediately and came up with a solution that only increased his dose 5mg for the entire day. He also understands that he isn't an expert on fragile x and recommended that we see the team at our local University in the fall.
For now he takes the meds three times a day, which means I can give it to him when he wakes up at 5:30am, rather than waiting two hours, before he dumps cereal all over the carpet or breaks my curtains and a meltdown ensues.
I mention all of this because something fairly remarkable happened tonight at dinner. Before this medication change, we had an issue. I made ham for dinner. Punkin likes ham, but he wanted Skittles and Frosted Flakes. He threw his plate, he screamed, he cried, and he dumped his milk out on the table.
"You can eat or you can go to bed."
"Watch a movie."
"Eat or bed."
"Eat this or go to bed."
So I took him to bed. And after 10 minutes he was calm enough to come out, pick up his plate, eat the five bites of ham, and be done.
Tonight I could see in his face that he didn't want chicken alfredo. He doesn't hate alfredo, he would just rather eat cereal all day. But he ate the five bites I put on his plate, tried a green bean, and announced, "I DID IT!"
I love meds three times a day.
Monday, June 20, 2011
Tuesday, June 14, 2011
He loves his summer program, and I hope he can continue to attend. Right now they are feeling like they need another staff member in order to support him, and obviously they can't just pull that money out of thin air. He's doing remarkably well, though, from what I understand.
He's not having meltdowns, he hasn't wet his pants since the second day, and he's only hit another individual (staff and students) three times. I'm impressed, and I'm thrilled that he's had time to spend with typically developing, same-aged peers.
Oh, and apparently at some point this school year he learned how to draw airplanes:
(It's that thing in the bottom right corner that looks like a fish with spikes. )
Monday, June 13, 2011
Tuesday, June 7, 2011
Friday, June 3, 2011
My job is not glamorous and it does not really pay much. All of the para educators agree that the health benefits and the people make up for the paycheck, though. And we mean it, especially the part about the people. Our school has developed a nice little family that wouldn't be easy for me to leave. Perhaps that's why I've hung onto changing diapers, redirecting problem behavior, and spoon feeding for seven years.
So back to today. This morning my principal called me into his office. A large gift bag sat on his desk, "This was on my desk when I got here. I don't know where it came from, but it's for you."
I took it back to my room and of course immediately opened it. The first package revealed a protective case. And that's when I started getting that surreal feeling and tearing up. I opened the next one and sure enough a brand new iPad sat in my hands.
I went back to the office and told the secretary, who had also been there when the principal gave me the bag, "I have to hug somebody!"
Everyone claims they don't know where it came from, so all I can say is thank you to the internet. I promise to post a picture of Punkin with it very soon. I downloaded the letters app as soon as we got home today and he told me, "Go way. Go o' der." He didn't need my help, and he was very proud. God is good.
Thursday, June 2, 2011
and more tape than Christmas morning.
After we taped the bottom halves of the last two pages back on, taped the inside binding, and added some reinforcement to a weak spot near his left arm, Punkin asked if he could sleep with the tape. "Uh, no. Not really the point of having you help me."
(The book? No, David! by David Shannon.)
Wednesday, June 1, 2011
He wears underwear when he goes swimming -- he always has. It's fine with me. The problem is remembering to bring an extra pair to change into after we're done. So if you haven't guessed yet, I forgot today. I also forgot to give him his 3pm Ritalin. So that was fun.
"MY NUNNERWEAR! I FINE MY NUNNERWEAR!"
"Punkin, I understand that you have no concept of time, but I assure that you will have new underwear in approximately 10 minutes. It will be okay." And that's when we walked to the elevator and he dropped his drawers.