Saturday, May 16, 2015

Hyperfocus and pseudo-phantom limb

After a long break from writing, I felt a strong pull to discuss an aspect of having Tourette's that many of us experience but have a hard time explaining to neurotypicals. Or even understand ourselves. I thought I'd give it a try. 

My body often feels like it doesn't belong to me. Obviously, due to tics, some body parts feel as if they are controlled by an outside force. Sometimes there's an inner directive, almost like a voice, that will tell my body to move. That's the voice of the urge. It tells me to twist my wrist, and it will repeat this directive until I do it. I can ignore it for short periods of time so that I can perform normal functions, but eventually, I will have to give in to the urge just to shut up my brain. That is followed by the relief that washes over me now that the tic has been performed. Depending on stress levels, health issues, etc, that period of relief varies greatly and can often just repeat the looping directive. That's pretty standard tic stuff. The "holding back a sneeze" analogy gets tossed around to explain this and fits pretty well. They put it on all the brochures, and it helps people understand us a little better and make us sound a little less freak of the week. 

Then there is this extra special level of Tourette's that is a thousand gallons of weird, and that I only recently expressed out loud to John. And of course he completely understood because he has experienced it too, so I thought perhaps other people with TS (or their children with TS) may also feel this way at times. So I will do my best to describe it in the hopes that it may help someone else feel a little less sack of hammers. 

There are days when I wake up and a body part feels like it's not mine. My left arm will cease to feel like it is attached properly, and when I move it, it feels foreign. Like an invading limb that was replaced in the night. I will become hyper-aware of its existence, and that alien feeling will become so strong that it feels wrong to use the arm. So I tuck it beneath me or press it hard against my side so that I can force a feeling of ownership to it. It needs to be touching another part of my body for awhile, a part that still belongs to me, so that it can reintegrate itself. During that time, the muscles tense up so much that it causes pain, which tenses up the rest of my muscles. After several hours, that fierce concentration spreads uniformly throughout my body until my brain decides to allow the limb to become one with the rest of me. This process is exhausting and uncomfortable to a spectacular degree and consumes so much energy that it's difficult to do much of anything while I'm waiting for the arm to assimilate. I can still use it when necessary, but it feels like working with a robotic arm, and it can be very disorienting. 

I often feel so much envy for neurotypicals because I can only imagine what it is like to put on clothing and then shut off the part of the brain that feels them against your skin. I'm constantly aware of every inch of my body at all times. I feel everything that touches me so intensely that I am never comfortable. My skin crawls at the slightest provocation, and most fabric feels like wearing a sandpaper straightjacket. Having Tourette's requires one to multi-task every thought and feeling and learn to compartmentalize it all every second of every day. We have to filter through sensory stimulation that most people don't even think about. We are often aware of those tiny body movements, like blinking, that neurotypicals do without thought. You may be able to sit in a chair and carry on a conversation as if the chair is no longer there, but my brain still tells me I'm sitting on a chair, and it's a little too soft, and it's making my jeans wrinkle weird, and because it's too high off the floor, my feet aren't pressing strongly enough against the floor, and oh right, my friend just asked me a question about a show I'm currently obsessed about, so I need to shift my brain to form some words right now. I think that this amount of intense shifting in the way we relate our brains with our bodies is what creates the rift between them and makes us feel like our bodies are not ours. It would make sense that at times, our brains reject the acknowledgement of body parts that are being difficult. My brain puts my arm in a time-out because it's just very done with telling it to twist that wrist. 

So this is a part of having Tourette's that I deal with, and maybe others as well. On the outside, I appear to have very minor Tourette's because my visible tics are minimal. Underneath that relatively calm surface lies a storm of activity that I imagine most of us with Tourette's rage through every day. And I've only begun to be able to articulate these feelings into words that I feel comfortable enough to share because I know it does sound crazy. But my continued goal in having this blog and being so open and honest about my experiences with Tourette's is to help parents of kids with Tourette's understand their children a little better. So that when a child tells their mom that his pinky toe feels like it's been cut off so he's gonna need her to tape it to the other toes, their reaction isn't quite as "What the fuck?" And I think we could all use a little less "What the fuck?" and a lot more "Whatever you need" in our lives. 

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.