Tourettes Uncovered

"Life is simple, it's just not easy."

Please spread the word to watch Tourettes Uncovered on Monday night at 8:00pm on the Discovery Health channel. The more people know, the more they will hopefully understand. Our oldest was diagnosed a few years ago, but looking back, we knew early on that there was something going on in his little body. He is now a teenager and is very positive about his TS. I'm sure there are moments when he really wishes he didn't have his tics. There are places he can't go, things he can't do, and people that don't understand and think it is something to make fun of. He does have "friends" that joke around with him, and that seems to be something he doesn't mind. When it's done with kindness, it's not a bad thing. If it makes my son smile, it's not a bad thing.
Our 2nd son had an eye tic a couple of years ago, but we never pointed it out to him. I'm not even sure if he noticed it. The tic has gone away, but OCD has welcomed itself. I also have OCD, so we talk about it together and even joke about it. It helps us both.
But now our 8 year old is struggling. He started having terrible headaches and tics over a year ago. He would come to us crying and screaming that his head hurt. Scary. Then he would shake his head and cry because it would make his head hurt more. And he couldn't stop. We took him to a neurologist who set Noah up with a bunch of tests. They found a cyst in his brain, but didn't think it was causing any of the symptoms. They did find through one of the tests that he might have seizures someday. I still don't know what that means. But thankfully he has never had a seizure and the cyst has not changed. We are still dealing with headaches and increasing tics.
Last year Noah started slapping himself. His teachers told me they thought it was to get attention. Honestly, that made my heart sink. The people that are with my son 5 days a week thought that what he was doing was something he could control - and I knew it wasn't. I tried to explain to them that I believed it was a tic, but I had to get a note from his neurologist to give to them - because I'm just his mother right? I don't know anything about my own child. Frustrating. So here we are starting a new school year, with a new teacher and in the upper elementary school building. I am once again going to try and educate about TS to those that spend all day with my son. I am trying very hard to keep the "Momma Bear" side of me calm. It's a bit difficult because they don't see or hear everything I do. They don't know that when my oldest started having full-body tics and cursing at a young age, his younger brothers were scared asking me if that will ever happen to them. And I couldn't give them an answer. We needed to wait and see. They don't see my little boy struggling to read and write his homework while his hand has to touch his face every 2 minutes and his head shakes and nods uncontrollably. They don't hear my child cry that he can't stop shaking his head even though he wants to because his head really hurts.
Noah has always had a lot of energy and has always been a tough little kid. But he is also very loving and caring. He is creative. He is fun. Anyone who has ever really gotten to know him, loves him. And man, is he honest! I am going to write a book with all of his quotes someday. It will make you laugh.
And after 3 little sisters, Noah finally got a little brother - and he is amazing with him. Jacob is like his best little friend right now. Everyday, Noah gets out the dinosaurs, the transformers, and the power rangers and shows them to Jakey. Noah gets so excited to show Jacob all the great boy toys around our home.
So next week I am hoping that many people watch the special about Tourettes on Monday night, and I am hoping that I have people with open minds and hearts at the meeting I am going to at Noah's school to discuss his IEP and schoolwork. I pray that they are understanding of what Noah needs to succed this year.