Monday, July 25, 2011

To my mom

"Stop doing that!
"You're only trying to get attention!"
 "You're making too much noise!"
"Be still!"

Most kids with Tourette's have heard these phrases more times than they can count. People without TS simply cannot understand. You can say, "I can't help it" a hundred times, but unless someone actually has TS, they usually don't believe you.
I knew something was different about me when I was 6 years old. I had what my mom used to refer to as "bunny nose," where I'd twitch my nose like a rabbit. I think everyone thought it was cute at first, but over time, I'm pretty sure it drove my folks nuts. I do remember them telling me to stop doing it and accusing me of trying to get attention away from my little sister. I tried to explain that I couldn't stop, but no one believed me at first. That tic eventually evolved, and I began to stick my shoulder blades out as far as they would go. I used this to impress the neighborhood kids, who ooed and aahed over this freakish trick of mine. I must have been exhausting.
At no point in my childhood did I get a diagnosis. I learned to suppress my tics until I was alone in my room, and the depression and OCD that came along with just made me appear bookish and a good studier. I was a miserable child, always feeling misunderstood and mostly alone.
And here is where my mom comes in. She treated me like I was perfect. I was no different, no better, no worse than my two younger sisters. We were all unique and very different from each other, and she treated us as the special little snowflakes she thought we were. I was more artistic and free spirited, Jen was serious and brilliant, and Steph was athletic and funny. She encouraged me to write, to sing, to dance, to be who I was. There was no judgment, no criticism, just unending and unconditional support. Her only expectation for me was for me to be happy. That's all she cared about. "Do something that brings you joy," she told me over and over again. When I was bullied, when I was sad, when it felt like the world would collapse around me, she always said, "This too shall pass." And it always did.
She allowed me to dye my hair when I was 14 because she believed in self expression.
She allowed me to paint my bedroom this insanely bright yellow because it cheered me up.
She allowed me to dress however I wanted as long as I was following the school dress code.
She taught me that being weird or different or strange was not only okay but far superior to being what someone else considered normal.
She came to school and screamed at my teacher because she was treating me unfairly.
She was a warrior for me, and I have never gone a single day of my entire life not feeling loved.
And she never knew I had Tourette's.
So thank you, Mom, for having the patience, compassion, and humor to navigate the minefield that was me. If I'm half the mother you have been to me, I will consider that a success.

Wednesday, July 13, 2011

The ADD Morning

I begin my day with the relaxing sounds of the ocean, slowly lifting me from my dream state into a bright new day. Oh, and by relaxing sounds I really mean the howler monkey screeches of Perrin bouncing on my chest shouting "WAKE UP!!!" directly into my face.  His awakening resembles what I imagine it looks like to watch someone take a speedball. He comes barrelling through the house for about 20 minutes, a little Tasmanian devil with no purpose other than to get as much sensory input as possible. He picks up a toy, flies it around for a bit, throws it on the floor as if he suddenly forgot what it was, moves on to the next. He likes to do experiments and his "work" first thing in the morning. He'll just randomly say to me, "I need scissors, tape, and an airplane." He then proceeds to tape up the elliptical machine, attach the airplane to it, and then step back to admire his manic genius. He's typically so engrossed in these activities that he forgets to eat, so 30 minutes before school I have to follow him around with food suggestions or just make something, set it on the table, and hope that the scent of food somehow sends his body floating towards it like a Looney Toons cartoon. Then the true work is to be done.
20 minutes before school I begin the "It's time to get ready for school" routine.  It goes a little something like this.
Me: Perrin, it's time to go brush teeth. Go upstairs and do it.
Perrin continues his work, either ignoring me completely or truly not hearing me. I repeat this command directly in his face. He begins to move up the stairs. He reaches the top of the stairs.
Perrin: What did you tell me to do?
Me: Brush your teeth.
Perrin: I have to take off my jammies first.
Me: Okay, then brush your teeth.
Perrin removes his jammie shirt, then is distracted by something shiny in his toybox and proceeds to dig it out.
Me now in his room: Perrin, take off your shirt, then brush your teeth.
Perrin goes to the bathroom to brush his teeth. He puts the toothpaste onto the toothbrush and then drops the toothbrush onto the floor. This pisses him off, so now he insists he can't brush his teeth.
Me ready to jump out the window: Perrin, pick it up, rinse it off, and BRUSH!!!
Perrin, calmly, like he's trying to talk me down from a ledge: Mom, I am brushing. Chill.
Perrin starts to brush his teeth, notices something moving out the window and must investigate. The toothbrush is now dangling out of his mouth as he opens the curtains to peer out.
Me, the blood pumping in my ears: BRUSH!
Perrin, having brushed 5 of his teeth in 2 minutes, then is told to get dressed. This must be told to him step by step. Perrin, put on your shirt. Shiny object beckons him, and he stops. Perrin, put on your shorts. The neighbor walks by our window. Perrin runs to the window, shorts still in his hand. Once he is satisfied that nothing exciting is happening that he is missing, he puts his shorts on. Perrin, put on your socks. Perrin then puts on one sock, upside down, and then wanders into the kitchen like a newly resurrected zombie that doesn't quite remember how to use his limbs and dreamily asks if he has eaten breakfast. He then remembers that he hasn't yet struck me down with his light saber and lunges for it, going to the dark side, sock completely forgotten.
Me: Perrin, put it down, get over here, and put on your sock.
Perrin, laughing at me as if I'm the most ridiculous creature on the planet: Mom, you're being so silly.
Me, totally won over by his cuteness and his complete lack of regard for anything: Come give me a hug and then put on your sock.
At the end of this insane song and dance, Perrin is dressed and ready for school, seemingly unaware that his mother is on the edge of insanity. I drop him off at school, drive home, and stare at the clock wondering if it is really too early for a mojito.
And then it begins again tomorrow.

Tuesday, July 5, 2011

Life in the bubble

We do not do "normal" things very often. We don't go to festivals or parades or parties with lots of people. We have created a bubble of comfort from which we rarely emerge. To others, it may seem as though we are sheltering Perrin or isolating ourselves from the rest of the world. In many ways, this is probably true. We are sheltering him, and ourselves, from the chaos that frequently makes both John and Perrin completely shut down. I have to take a threat level assessment before we go anywhere to determine if any of us will be able to make it through an activity. We can't go for a family bike ride around the block because Perrin is convinced that he will crash into a bush and is therefore terrified. Because of this, he is missing out on a childhood rite of passage that I'm beginning to think may not be worth the drama. We were invited to a neighborhood BBQ thing yesterday for the 4th.  We had to leave after 2 hours because Perrin had become so convinced that the other kids were trying to kill him that he started to hit anyone who came near him.  He has become afraid of everything. We haven't watched a new movie in over a year because the last Shrek movie scared the shit out of him, and now he thinks every movie will have a bad guy in it. So we don't go to theaters anymore, which is something that he used to love. The fear makes our bubble smaller and smaller. Trying to bust out of that bubble usually ends in tears, and so I have to ask myself every day, "Is it worth it?" Is being a part of the world worth the suffering it causes? Am I making my son stronger by pushing him to do these "normal" things so that he can adapt or am I causing unnecessary trauma? Is the world worth popping the bubble?