Tuesday, January 13, 2015

2014 - The Year of Big Changes

This past year has been a whirlwind of excitement and change. Many people with Tourette's don't handle change and/or excitement well at all. We are no exception. While I myself love and embrace the more spontaneous nature of our lives, my guys like a little more structure and predictability to feel content and safe. This year was definitely an exercise in upsetting the balance of things and learning to come out on the other end intact and still kicking.

At the start of the year, we were still in the process of enrolling Perrin back into public school. We had decided that the psychologist who declared that our kiddo was intellectually disabled was a loon, but she did have a point that he needed more than I could provide him. Homeschooling was never meant to be a permanent situation for us, and he was ready to jump back in. It took several months of testing and consulting, but finally by spring, we had found our winner. A small, self-contained classroom with kids who were dealing with a lot of the same social anxiety and emotional intensity that he does - there's even another boy with TS in there with whom Perrin can share in his frustrations over his tics. You can see the excitement on his face as he began his adventure.

 I thought it would be a bumpy road back to public school and that the staff would really struggle to deal with Perrin's many tics, his inability to stay seated, and his frequent refusal to do his work due to frustration and exhaustion. It turns out, he has an amazing team of people who care a lot for him and the other students, and they listened to all of our suggestions and have instituted all of them to their benefit. As a team, we decided that handwriting just isn't going to be manageable for him, so he is learning keyboarding a year early, which should help him tremendously. He is using Dragon Dictation software so that he can begin putting his wonderful imagination to good use. His teacher added realistic goals to his IEP that will push him academically, and I know that she genuinely believes he has the potential to learn.

Not only has this transition been good for him, but it has tremendously improved our relationship. He never really adjusted to the idea of me being both Mom and Teacher, so now I can just be Mom. Next year is middle school, and that's a whole new ball of anxiety, but we'll jump off that bridge when we get to it.

Another adventure we had was going to The Bahamas. Perrin and I got our very first passports, and we spent a week in paradise. This was right after a major med change, so our first couple of days were a little rough with him not knowing what to expect, and the heat was fairly brutal. Once we settled into a fun routine, we all had a wonderful time. There was a major drama involving our dolphin excursion because a storm passed over, and we all had to wait 2 hours for it to dry out. Perrin's anxiety had hit its max at that point, and he fell apart. It was 2 hours of wailing with the dolphin trainers trying desperately to help us calm him and completely not understanding that he needed to be left alone. Eventually I did take one of them aside and explain about Perrin's neurological quirkiness, and he completely understood and went above and beyond to make it worth the wait. Perrin got extra snuggles with the dolphin, and from the pure joy on his face, I could tell that all the trauma was washed away by this magnificent animal.

Watching Perrin in the ocean without a care in the world was beyond rewarding, and for our first international vacation, I believe it went well. We're hopeful that in a few more years, we can add Italy to our list.

The next big change in our lives was to our home. John and I let fatigue and impatience get the better of us, and we settled for something we didn't really love. Tiny bathrooms, tiny unfenced yard, and hideous yellow paint in the largest room in the house. It has taken us 8 years to get to a place where it's starting to feel like our home, and getting rid of that yellow was a huge step in the right direction. We replaced it with a soft gray that will eventually extend to our dining room and kitchen once we open that up as one large space. We also put in skylights, and now it is my favorite space in the whole house.

I saved the biggest change for last. Perrin has been on virtually ever medication under the sun for TS and a plethora of comorbids for half his life. He began taking stimulants for ADHD at age 5, and the next year we added antidepressants for OCD. Due to the negative reactions to those, he was then placed on risperidone, a pretty hardcore antipsychotic, for both his tics and a mood disorder. He was originally prescribed it for early onset bipolar disorder, but over the years we all realized that this was simply not an accurate diagnosis, as it was diagnosed by someone with little knowledge of TS. We attempted twice to wean him completely off of it, but it was never the right time. He was usually on another medication with it at the time, and we never found the right combo to really be effective for any of the comorbids. So this spring, I finally threw my hands up and said "I'm done." Over the course of 4 months, I took him from 4.5 mg to nothing. Perrin has been absolutely med-free for 7 months, and I finally feel like I'm getting to know who he really is. There's no longer that fog of confusion from him all the time, and he experiences a natural intensity of his emotions in a way that he is able to express and resolve. This is the most emotionally stable and healthy he has ever been. Of course he tics, but no more than before.  Of course he still has sensory issues, mood swings, ADHD, and obsessive tendencies. Only now he can actually mine his brain for the right words to make himself understood. He no longer has rage attacks, and even when he does experience an episode of anxiety or anger, it is almost always quickly resolved with a few minutes alone to collect himself. The vast majority of his behavior can now be considered fairly typical tween nonsense and treated as such. Most of his freakouts can be quickly diffused with humor, and he and I have returned to our lighthearted sarcastic banter. I've introduced him to some of my favorite TV shows, and he is just becoming this truly interesting person.  I'm certainly not closing my mind to the possibility that he may need to go back on meds in the future, but right now he is good. And that makes life a hell of a lot sweeter for all of us.

So here's to 2015. Here's to kitchen remodel, middle school, Yellowstone, and me potentially publishing a book.