Sunday, June 21, 2015

Brain Training: Twelve sessions in

Tommy completed his 12th session on Friday.  When we started this process they said we would start to see results in 10-12 sessions.  I'm not sure if the tics have decreased or not.  To me it seems like they are as present as ever.  Most of his tics are bilateral, meaning he moves both arms at the same time.  I have noticed that sometimes he only moves one arm.  Maybe that's forward progress, I don't know.

He has moved from playing games with his brain to watching movies.  Big deal, right?  Well, if his brain doesn't do what it is supposed to, the movie goes blurry and he has to slow his brain down in order for it to come back into focus.

I read a fictional book this week that hit close to home called The Perfect Son.  It was about the parents of an only child with Tourette's Syndrome.  His name was Harry and he was 17.

The mom was primarily in charge of the treatments, the visits to the psychologist, the psychiatrist, the therapist, and all of the activities he did, like vocal training.  The dad was very focused on his job and really had no idea what his son went through on a daily basis.  The mom had a heart attack and the family dynamic shifted and the dad had to be more involved in Harry's life.

The thing that struck me most was that Harry had a best friend named Max.  They had been friends for years.  Max was his best friend, his brother, his protector.  When anyone messed with Harry, Max was there for him.  When Harry's mom was sick, Max was there for him in an instant.  I know this book is fiction, but it made me think, WHY can't Tommy have a friend like Max?  He needs that, more than you can imagine.  This journey would be so much easier for him if he had a friend like that that he could always count on.

He HAS friends, but these kids are 11-12 years old.  They get frustrated with Tommy, he has impulse issues and says things before he thinks.  He gets angry easily.  He misjudges social cues.  These are all things tied to TS and kids don't get it and they distance themselves.

Middle school starts in August.  I really hope that Tommy walks into school and meets his Max. "Max" doesn't need to be perfect.  He doesn't need to be a jock, or a musical star, or the smartest or most handsome kid in school.  He just needs to be a friend that Tommy can count on through thick and thin.  Underneath the TS Tommy has a lot to offer.  He's funny and smart and "Max", if you are out there, Tommy is waiting for you.

Thursday, June 4, 2015

The latest in all things People Hater

I've lost track but I think we have done 7 brain training sessions.  I had a nightmare the other night that whatever they are doing to him worked in reverse and made the Tourette's Syndrome worse and they didn't know why.  I think this stems from the fact that after every session his tics are REALLY bad.  They were really bad yesterday and even worse last night.

Tommy's struggle this summer is that his friends aren't really available during the day.  Most of them are in a summer program and the two boys up the street went out of the country until September.  Tommy didn't want to do a summer program, so he's basically doing nothing.  The first week has not been easy.

Last night he was playing with a friend and I'm not sure what happened but all hell broke loose and he came home super upset.  When the kids are messing with him (not in a mean way) he takes it wrong and flips out.  His impulse control is non-existent, and those of you who know him understand that he can get really LOUD. 

He got home and was upset and the tics were so bad it's like he was having a seizure.  I pretty much melted down while I was talking with his mom...too much going on right now and I'm feeling overwhelmed.  Adrian is working his butt off burning the candle at both ends and we are stressed.  I feel guilty because I won't be home the next 2 nights and worry about Tommy.  I feel like I'm on one of those things at the park that spins super fast and I can't get off and I want to throw up!

I guess the point of this blog is that Tourette's Syndrome just doesn't effect the person afflicted, the whole family deals with it and it is not easy. 

Since it is Tourette Syndrome awareness month until June 15, here are some facts for you:

  • One in 100 people, mostly males, have Tourette's. 
  • There is no cure for TS.  Yes, people can learn to control it, but it's very difficult.  Think about your nose itching and you can't scratch it.  The more it itches the more agitated you become, but you can't reach it, you can't make it stop.  That is what it's like to hold in a tic, it can be physically painful.
  • About 25% of children with TS will outgrow it.
  • There is no medication specifically to treat TS.  There are drugs for things like high blood pressure, heart conditions, migraines, etc. that have good results in children with tics.  For Tommy, many of these worked for awhile, but then they just stop.
  • Tourette Syndrome is not just verbal tics.  Lucky for us, Tommy's tics aren't verbal.  If you ever come across someone who is making noises like throat clearing, screeching, etc. it is possible that they have TS.  Be kind, don't stare.
We are looking forward to the next couple of weeks.  Between 10 and 12 treatments we hope to start seeing positive results from the brain training, in the form of reduced anxiety and reduced tics.  Stay tuned.