Friday, August 22, 2014

Ticing in the backseat!

On the way to school this week, My little Tourette kids totally cracked me up and I thought I would share one of the fun things about Tourette. So in my last post I told you about Baby Mermaids Tigger 2.0. Well Monkey man also has a full body jerk, its not quite as intense as Baby Mermaids Tigger, but it happens all the time. not just laying down like the Tigger. Also every Touretter at our house curently has an eye blinking tic. Well I talked about how some times see tics remind you of tics.(like doing someone elses tic)  Well the kids in the back seat started laughing and I looked back and one of them would tic which would cause the other one to tic, wich would start the whole cycle over again, so we jerked and blinked the whole way to school with a lot of laughter. I wished that I wasnt driving so I could have got a video. It just reminded me of my whole "enjoy the journey." Sometimes things are hard and lets be honest some times it sucks. but most time when you look at the little things you can find joy! well I am off to enjoy!

Monday, August 18, 2014

Tigger 2.0

Baby Mermaid has a tic that we call Tigger 2.0. Tigger 2.0 is a full body tic that looks a lot like a seizure. It caused her to knock out a tooth. When we moved into our new house, Baby Mermaid was so excited because she could use her bed again. We had been in a small rental for a while and she had been in bunk beds. So when she came to me and told me that she wanted to sell her bed, I told her that was fine, but I keep exploring the reasons why. eventualy she told me she was scared that she was going to get hurt.

 as tyou can see in the picture, her bed has lots of places to bang and hit when she tics. I told her she could easily sell her bed, but if she wanted to keep it that she should because we dont let Tourette stop us from the things that we love. So we put her bed up, and came up with some strategys to keep her safe. extra pillows, laying certain ways. One day she came in to my room, just a little mad because she had tic-ed and it had knocked out one of her baby teeth. I held her and laughed and cried with her. but guess what! she still has that princess bed, she loves it.
But this causes her a lot of pain. as you can imagine. She only does it when she lays down so going to sleep is especialy hard.
One day I was driving my car and she was in the backseat, I was driving down the freeway and my car started jerking like I was running out of gas. I looked in the rear view mirror and she was back there ticing away. My car was fine, Her tic just had so much power that it was rocking the car.

Thursday, August 14, 2014

Wins and Losses

My main objective in raising kids is to help them grow into responsible, happy, self sufficient adults. Is that not every moms goal? So why is it so hard to see them become self sufficient? I always tell my Tourette kids that you are your best advocate. If you think someone is not getting "it", get in there and explain, educate, and be a friend. If you still have a problem, Mom's got your back!

 Yesterday was the first day of school for my kids. The first day of school is stressful enough. Then add a crazy disorder that causes you to say crazy things, make crazy faces, and lets admit it be a bit weirder than any kid wants to be, and you can imagine, my stress level is in exact correlation with my kids, multiplied by 12,000 percent.
When my kids climbed into the car on the way home from school, I was excited to listen to their journeys and experiences. When I asked Monkey Man if it was a high tic day or a low tic day, he responded with "Low. I only tic'ed about 5 times." Then he got really quiet and said "Hey Mom, do you know E___, well, he kept getting in my face and doing my tic. I asked him nicely to stop, but he wouldn't."
So why is it a big deal to do someone else's tic? When you have Tourette, it feels good to tic, just like when you have to sneeze and you hold it in for a while and then finally let it go, you feel a release. Well, when you see someone else doing your tic, it makes your brain say "Oh man, that looks like it feels good, lets do it too." Like when you see someone eat something delish, your mind says "Man I need that too."
My Mommy bear instinct kicked in, and I was ready to go solve some problems. Monkey Man said he tried to talk to him, so I just thought I would go talk to the teacher and get things worked out first thing in the morning before school. I asked him if he wanted me to go and talk to his teacher, he was like "OK."
 This morning I got up early, did my hair, put on a clean outfit, made sure I looked "OK", which let's admit, is a small victory in itself, considering today I go to Yoga as soon as I drop the kids off at school.  I didn't want to embarrass the small boy. So I park the car, jump out and head into the school. As I get to the front doors, Monkey Man stops, and is like, "Mom, just go home."
  I (feeling heart broken) say, "You sure? I'm right here, I'll just dash in and talk to your teacher."
 He says "No, I got this"
Gulp, I don't know what to do. Lets admit it, as parents, fighting battles is our job description. I think I just got fired by my 5th grader. Well, the youngest does not need me any more, I will just go get a job. As I stand there feeling totally awkward, Monkey Man says "Mom, there is E___,"
 So I make a fist and smash it into my other hand and say, "I'll just go take him out, This will only take a second."To which Monkey Man Laughs. I grab Him, (my son not the other kid) give him a hug and a kiss on the forehead. I'm not above embarrassment, it builds character! Turn around and walk away from the school. I call my husband and cry. I call my friend and joke at my pain. Go to my best friend/neighbor/boss/confidant (who everyone needs) and tell her my story, laced with lots of sarcasm, it's my media of choice.
She looks at me and says, "He is just doing what you taught him to do",
and with a tear in my eye, I responded with, "But, now I don't have a job." (I know stupid thought) She looked at me like I was off my rocker and said, "No, now you just have to wait, make sure that everything went well at school, and go from there. You're still back up."
Well duh! of course this is what I want! To be back up!

So Monkey Man got home from school. I asked how it went. He was like "Great, I talked to my teacher, she talked to E___. No one tic'ed in my face."
I'm putting this story in the Wins category. Things happened exactly as they should. My kid IS his best advocate. I had the same roll I've always had. As backup, just because I wasn't called up off the bench, I still did my job. Even though it felt like a loss, like my job had been diminished, it really was a huge win on the course of getting my kiddo to the end goal, of becoming independent, of becoming an amazing adult, which lets admit, is a step above my goal.