Wednesday, February 22, 2012


It has been quite a year so far.

 Let me 'splain.
 No, there is too much. Let me sum up. Buttercup is marry' Humperdinck in a little less than half an hour. So all we have to do is get in, break up the wedding, steal the princess, make our escape... after I kill Count Rugen.

Er, um

Homeschooling is going well.  Perrin and I have settled into a nice little dance, and despite my attempts at being spontaneous and creative and more hippie-like in my curriculum, Perrin has decided that he'd much rather just get to it and be done with it so he can move on to play. The computer has become our best friend. Due to a huge increase in Perrin's tics, it's much easier for him to manipulate a mouse than a pencil, although I do insist on at least 20 minutes of handwriting practice and journal writing every day. I know that inevitably he'll do all of his work on the computer, but I do think it's important to be able to write at least somewhat legibly.
We have had a great time exploring science, and it's absolutely our favorite subject to share. We've taken field trips to the Field Museum to see the largest T-Rex skeleton, and The Museum of Science and Industry where Perrin got to stand inside a tornado. Our co-op had a lesson at the college's planetarium that Perrin loved. We've created a volcan as well as a life size human body complete with organs.
I discovered fairly early on that Perrin hadn't really learned phonics at school, and his learning style is definitely geared more for a whole language approach, but we are going back to basic decoding. It's difficult for him to sound out the words, and he still struggles with remembering the rules, but good gravy, the english language is insanely confusing. How anybody learns it is beyond me.

Our biggest challenge this last month has  been issues with medication withdrawal. When we began neurofeedback, the director recommended that we decrease Perrin's risperidone, as it may affect his brain's ability to train. Huge mistake! I mean, I'm going to go on the record saying this was a huge parenting fail on my part. We decreased very slowly down from 3 mg to .5 over a 2 month period, and what I learned at the end of this process is that he simply doesn't function very well without it. His tics are now the worst they've ever been - he grinds his teeth, his entire body convulses on an almost constant basis, he now has a coughing tic that is heightened when he eats, causing us to be paranoid about choking at every meal. The kid now hates his tics, and they exhaust him. He becomes easily frustrated by simple tasks, and his moods have become unpredictable. We saw mania like we hadn't seen in 2 years which could quickly turn to tears over the smallest thing. Now that we've put him back on the risperidone, he seems to be calming down, and he's a lot more stable and happy.
On top of all of that, we're 20 sessions into the neurofeedback and seeing little change in Perrin's focus and attention span. It's hard not to be discouraged, but I have to keep reminding myself that it does take time, and that the hope I had placed in this process was probably a little overly optimistic. His speech seems to have improved, his ability to retain new information seems better, and his reading has definitely improved. I have no idea if this is due to the neurofeedback, but we're excited about his progress.
Overall, life is as it always is. We treasure our good moments like people who will never have them again. We try to get over the hurdles as quickly and painlessly as possible, and we stick together through it all. Perrin knows he can talk to John and me about his tics, about how tired he is, about how frustrating it is to live in a body that never stops. He knows we get it. I think that brings him some comfort.