It's a Tourette filled day (in a good way!)

A few months ago, a friend who works at a private school in Providence told us that a speaker with TS was coming to the school where she works. I immediately blurted out "Is it Marc Elliott?!" Marc is a 25 year old motivational speaker who is known internationally for speaking about tolerance. I have seen various clips of him and was so impressed by what I had seen that I really wanted to see him live. She said "I don't know, but you and Liam are welcome to come as my guests". A few days later she touched base via email and it was indeed Marc Elliott that we were getting the chance to see! This morning (after I called Liam out of school) we hopped into the car and drove to Providence to meet our friend. She met us outside of the building and as we walked into the entrance to the auditorium, Marc was standing there talking to one of our friend's coworkers. She introduced us, and Liam and Marc had the chance to chat. Marc is exuberant, funny, charismatic, self effacing and genuinely kind and caring. He treated Liam like he was a rock star. I told Marc that we were having an all TS day lined up- Marc, our first appointment with our new therapist who is going to work with Liam on HRT, and our monthly TSA meeting. Marc gave Liam some excellent advise on HRT. He told him that it may really help him a lot, that it is A LOT of hard work, and most importantly, not to beat himself up inside if it doesn't work for him.

Liam left to use the rest room and Marc explained to us that lots of times when you're trying to control the urge to tic it's overwhelming and it's all you can concentrate on. He said that it takes a lot of hard work for HRT to be successful.

There were a few things that really stuck out from his presentation. He talked about tolerance, and why teaching tolerance is more important than teaching acceptance. While acceptance is the ideal that we should all strive for, we are all human, and we all make assumptions about other people all the time. The important thing to remember is not to turn those assumptions into actions. Live and let live.

Marc mostly told stories of peoples' reaction to him. The story that I think will stay with me for a very long time was that he asked someone who had a very accepting reaction to his TS why he was so accepting. The other man "Jay" (who Marc met on a subway platform in NYC) said that he was on a bus one day and there was a very loud kid screaming at the front of the bus while Jay was at the back. Everyone on the bus was kind of talking about why the father (who appeared to be sitting next to the child) wasn't doing anything. Finally someone else on the bus walked up to the dad and said "will you please control your child?". The father explained that they were on their way home from the child's mother's funeral. Jay's take away from this experience was that you never know what is going on in someone else's life, you never know what challenges they are facing. If you can be accepting, that's the ideal, but at the very least we should all be tolerant.

After the presentation, Liam and I went up to stay good bye, and you would have thought Marc was saying good bye to his best friend in the whole world, he gave Liam a big hug.

(to visit Marc's website, go to the link on the right hand side of the page)
So now we're on to TS adventure #2 of the day- Liam's new therapist, Dr. Bidwell. I'm nervous but hopeful that this will help Liam feel more comfortable.

Tonight we're going to our monthly TSA meeting. This month one of his new friends is bringing Yu Gi Oh cards, TSA meeting and Yu Gi Oh duel combined- what could be better?

Matt Giordano

We had the pleasure of seeing Matt drum and hearing him speak at the September RI TSA Meeting this year. Can't share the speaking with you, but here he is drumming. Enjoy.

One step forward, two steps back

I got the call today. The one I've been waiting for for quite some time. The Anxiety Research Clinic is taking Liam as a patient. They will work with him on CBT and Habit Reversal Training. While I'm a little hesitant to pull him away from his therapist that we've been seeing, I want him to give this a try. They will be working with him to realize the feeling of a tic coming on and develop a competing response to try to lessen the tics.
There are a few schools of thought on this within the TS community. Some feel that it is an awful lot of work for little return. Some feel that it's not good for people with TS to suppress their tics. I feel that Liam does this anyway on his own, and if he can get some help with better ways to do this, it will be easier for him. I explained to him that it may help him with turning his loud squealing tic into something that's less noticeable and easier for him to deal with in public. I asked him how he felt about that. He said he wasn't sure.

He told me that he was taking his break today at school. He takes two timed walks and has permission to take walks whenever he needs a break. He usually is able to suppress his tics in the classroom and lets out his loud squeals on his walks. He told me that today while he was taking his walk an adult told him that "that is enough of that" when he was walking near her and he ticced. I asked him who it was. He said "I don't know, some parent." He told me that he tried to explain but he ticced again and she told him to stop it.
So while I feel that the world should conform to Liam and be more supportive and less judgemental, if we can help him to lessen the tics and make it easier for him not to have such severe tics, we'll give it a shot.

Report Card YAY!

To say that this has been a challenging year academically would be an understatement. It does not help that Liam's sister is academically a superstar- I don't believe she has ever brought home less than an A. So while we don't make the comparison, I'm quite certain he does. This has been a year fraught with average grades for him, and he's unbelievably hard on himself. I try to highlight the positive of what he's done well in when he brings home a report card, and remind him that if he did his best, that's all we care about. The biggest accomplishment for me was the comment!
First marking period the comment was: Liam is impulsive and inconssistanyt in his daily work.
This made me seethe. Did she not read his 504 plan and the information that I had attached to it about Tourettes being more than just the tics? I tried to discuss this with her at the parent teacher conference and she was fairly dismissive and wanted to discuss what Liam was doing well academically and her fears for bringing him up to speed for middle school. I thought second quarter would be better. Nope.
Second marking period comment: Liam likes to make his own directions rather than following the directions given. His written work is not always organized well.
No, Liam has a neurological disorder that makes it very hard for him to follow directions given and sometimes he needs to have it gone over in a little more detail and time. Liam also has in his 504 plan that all writing assignments should be done with a graphic organizer because he has a hard time organizing his thoughts when writing.
The thing that made me most furious in these comments is that by fifth grade, we all know that Liam is reading the comments himself as soon as he gets out of the classroom door. I had this discussion at our last 504 plan meeting and asked his teacher to PLEASE email me or call me with those types of comments and to try to find something positive to say about my child in his report card because he comes home pale as a ghost and horrified when he has to hand them to me.
I am happy to say that this report card was different- he burst in the door and yelled "mom I got a great report card!" And it is. All As and Bs, not a single C in sight. A check mark in needs to work on self control and needs to work on working independently. And the piece de resistance in my opinion:
Third marking period comment: Liam has shown improvement in all areas.