Wednesday, June 6, 2012

A Different Kind of Meltdown

Many of you on Facebook saw my post about this today. Dean had two therapies today, which is not what we usually try to do, because he seems to benefit from things being spaced out.

He had PT this morning with a different therapist, and I'm realizing now (I had a hunch already) that he doesn't really like this one. For the entire hour, he evaded tasks and tried to run away. He hasn't done this in a long time, so I knew something was up.

Then in the afternoon, he had OT/speech (he gets a combo session on Wednesday afternoons). They took him into a different room with all new items and surroundings and everything. Dean was doing the same behavior with running away, avoiding tasks, etc., but it was a little better than in the morning. Then at the end, the OT brought out a lacing activity (stringing beads through pipe cleaners). Dean HATES lacing. HATES. H-A-T-E-S. At that point, he'd had it. He ran away and kept pushing away when they would bring him back because he just didn't want to do it. They negotiated down from the 5 left to 2 more to encourage finishing a task (which I was in agreement with them - I don't want to reward misbehavior by ending the task without finishing it). Dean flipped out out of nowhere. He started screaming and throwing himself around. He doesn't engage in intentional self-destructive behavior, but in the process of having some of his tantrums, he sometimes hurts himself. He was especially out of control, in a way I've never seen before, so I grabbed him and tried to restrain him on the ground so he wouldn't hurt himself. Dean is QUITE strong and he bucked out of my hold and flipped around to hit his head on a receptacle on the wall behind me. :( At that point, he was now sad, in pain, and VERY angry. It took him another minute to calm down (he was still screaming and thrashing), and then we decided it was best just to end the session. His therapists agree that it was probably from too many things changing in his routine in one day and he'd had it.

I felt numb leaving the therapy center. Dean's tantrums pale in comparison to the intensity and length of Cole's tantrums when he was this age. Cole would scream and throw a fit sometimes up to a half-hour or longer. Dean's tantrums are less intense (although still intense), and very short-lived. Of today's episode, Bob said (when I explained it to him back home), "sounds like this one was to a whole new level." But it wasn't. It just felt entirely different, without comparison to his other tantrums. Something about it felt like Dean was very, very out of control. Like PWS had taken over. This was not a typical tantrum. Once back in the car, I told Dean that that behavior was not ok and that he really needed to listen and finish his work. He said nothing in response, but the look on his face seemed to say, "Mommy, I had no choice in this matter. It just happened to me."

Like kids with autism, kids with PWS can often be very inflexible when circumstances deviate from their expectations. A subtle difference here or there can set them off. We've experienced this to some extent in Dean before, like one day when he was convinced Cole was coming out of a certain classroom at school and threw a fit when I tried to tell him that he was at a different door. But this was more.

Oddly, even though I was upset, embarrassed, and even angry about the situation, I was not discouraged. If anything, I felt more encouraged to fight for Dean and to help him through situations like this. I posted on Facebook, "we might have lost the battle, but I refuse to lose the war." A mom with an adult son with PWS replied, "you will lose many, many battles, and you will NEVER win the war." I'm sorry, but I just don't believe that. Maybe I'm in denial, but I refuse to look at Dean's life as a fight that cannot be won. PWS continually tries to get us down, but I'll just keep getting up. Tonight I found myself saying a prayer for all those for whom their brains cannot adjust to the changes that are inevitable in life. Once back home, I hugged Dean over and over because I just wanted to fill him up with love. Dean was back to his usual self within the hour, which is amazing. He is a model for how to bounce back from a tough situation. As usual, I continue to learn so much from him.

How can you not want to fight for this?


Maegan0514 said...

Ali, You are so wise! I love that you are determined! With determination and strength, I believe we WILL win this war against PWS one day. :)

Janet Gulley said...

I am with you. One battle at a time we will help our kids be happy, active, healthy, caring, productive,... children of God. That's winning the war to me!