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.

Friday, July 18, 2014

Public Service Announcement

After our cute little tic that disrupted our announcements in church. I texted our Bishop and we decided it was time for a public service announcement on Tourette.
The one I have given in the past goes as follows:

Tourette's Syndrome is a neurological condition that causes a chemical imbalance in the brain, our brain releases chemicals to tell us to move or speak, People with Tourette have an excess of these chemicals. this causes a tic. A tic is a sudden rapid recurrent stereotypical motor or vocal involvement… or in lay mans terms a movement or sound that your body makes that you cannot control.
There are 3 different kinds of tics,
Vocal Tics sneezing Sniffing and Monkey mans Singing (Coprolalia)
Motor Tics jumping, clapping, facial movements any movement that your body can make
and Tics of the mind (which is kind of like OCD)
What does this mean to you and me?
well for me, I have 3 kids with Tourette Syndrome, that just means that my life at home just got a lot more exciting. my kids are just like everyone elses, they make me Happy, Proud, Sad, Worried, just like everyone elses kids, but my kids also make weird noises, jerky crazy movements, and some times say Social Inappropriate words. But, I Love them even with all the “Tourette Craziness”
I know that Heavenly Father has blessed our family with Tourette, we have become a stronger family. one who has empathy for each other, and others. I am thankful for our ability to cope with this disorder that affects every aspect of our lives. even church
What does this mean to you?
That you guys get to go on this fantastic ride with us, when you are in church or other social interactions with our kids you may get to see the effects of Tourette, You may hear monkey man’s silly words, or see Baby Mermaids crazy faces… do we expect you to not jump in surprise? no, because we still do that, but we would like understanding. that our kids reverent behaviors may look different than yours..

I think in the past this has gone over pretty well. There are a few things that are a bit "controversial" and I will explain why I say these things.

The first thing that the Tourette community shys away from is the tic of Coprolalia. Why do we shy away from this? Because, traditionally everything you see about tourette includes coprolalia, when ever you see it in a movie, or you say my kids have Tourette, the first thing people think is that your kids are going to swear all the time. The fact of tourette truth is that only 10% of the Tourette population have Coprolalia. The reason why I explain that is because Book Worm has Coprolalia. Fun times.

The second thing that I usually get slack from is the use of the term "blessed our family with Tourette"  as far as I am concerned Tourette is NOT a blessing. If I thought it would do any good, I would pout an cry and ask for it to be taken away. But as it is not going anywhere, (as far as I can see in the predictable future) and it is something that will affect our family as far as the eye can see. I have to see the positive affects that Tourette has on my life. I truly do believe that the people that we have met are Amazing people. People who are strong in the face of adversity. Who do amazing things with an incredibly difficult disorder. People who inspire me. also that we have become a more empathetic family. We care about other peoples struggles, not just ourselves. We have become more protective, and kinder to each other, and we have learned to love each other even in hard situations. Are we perfect...Heavens NO!  anyone who lives by us will probably tell you quite the opposite. bet we are working on becoming better.

The third thing that I am needing your help with is because people say that I need more of a call to action. what things in particular do I want people to do? How can they help my kids?  What does the kind of help I am looking for look like? I am a crier, just putting it out there. So by the time I am done reading this the tears will be flowing. I need some concise points added of what things help. I'm really good at telling about Tourette, how I feel about Tourette, how we deal with Tourette. But telling others how to deal with it is hard for me!  So any help would be appreciated.

Sunday, July 13, 2014

Tourette and Church. need I say more

So, Since I have only had 6 posts up to this point, and our tourette life goes back 4 years, you are missing a lot of info! Baby Mermaid was our first Diagnosed child with Tourette. Then Brian, My DH was self diagnosed. Which, in our tourette circles means that he has all the requirements for a tourette diagnosis, but why bother...(he is an old man). Then our sweet Monkey Man was diagnosed, We are LUCKY with Baby Mermaid because she just has Tourette, none of the comorbid disorders that go along with it. Monkey Man has the Tri-taverate of Tourettes, Anxiety, OCD, ADHD, He also has been diagnosed with executive Dysfunction. Then we were blindsided with a Diagnosis for Book Worm. wow! that is a lot of info in one paragraph!
Needless to say we have been doing a lot of Tourette. Its kind of a big deal at our house where 4 of the 6 have tics. I Have a friend through the Tourette Syndrome association named Whitney Fits-Flygare. She says if you have seen one kid with Tourette, you have seen one kid with Tourette. Meaning that Tourette looks different in everyone, and everyone needs different things when it comes to tourettes. Baby Mermaid has lots of physical tic's and needs very little advocation on my part. She is really good at explaining and people not having a problem with it. Yes some times she runs into problems, but she knows that I am in her corner. all she has to do is give a yell and I come running. Monkey Man is way more vocal in his tic's. He is still having a hard time standing up and explaining, and we have run into the problem of people not believing him. Our new ward (congregation) Is really great. but its always changing. Today in the middle of announcements he dropped the dirk...
Now this was exciting because we had a lot of visitors there! and lots of them didn't even know that he has Tourette, let alone why this kid is singing out in the middle of church! I would love to end this story with I just sat there and smiled and totally supported my kid. But lets get real, its loud! It echoed through out the chapel, People looked, I turned red. But I think its O.K. My kid didn't see my face, my kid just saw my fist come up for a fist bump and I put my arm around him and gave him a kiss on the forehead. I love this kid! and I hope he felt that, and I hope he knows how much I respect him for being true to himself!

Friday, July 11, 2014

A new start

When I started this blog I wanted to share with everyone my struggles as a parent with a child with Tourette. Man that is a mouth full. I know when we first got diagnosed, I goggled Tourettes and all I got was scary stuff of how my life was ultimately going to suck, and change, and be hard. I cried a bunch. Lets admit it thats a perfectly good response. I'm not a bad mom for that reaction. Even though at the time it felt wrong. but everyone goes through a mourning period for the change in your kids life. But as life went on and things got better I thought. I have a great Idea! I will have a blog that shows how life is hard, but fun, and manageable with all this Tourette fun! SO I started the blog with great intentions of posting our everyday triumphs, challenges, heartache, all that everyday stuff. but it all felt so mundane and I felt so inadequate in telling my story. but lately I have been thinking that that is exactly why I started this blog. The story of an inadequate mom, telling her story, which isn't big and exciting, just an real life account of one family's boring everyday life with Tourette. so if you will stick with me, and my just everyday mom-ness. We can enjoy the journey together!