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.

New sports season, new people to tell

We got the info on Liam's first baseball practice this year. I have mixed feelings about that these days. He's getting to an age where it's less acceptable to skip practices, but if I know he's overstimulated and tired after school, it's really hard for me to take him to practice. I also had to write the obligatory email to the coach in response to his email regarding the first practice:

We're looking forward to it! FYI- we put it on Liam's registration, but just so you know ahead of time, Liam has Tourette Syndrome. It's a neurological disorder that makes him have motor and vocal tics. The motor tics are pretty small (at the moment). His vocal tics can be pretty loud. He does not have coprolalia ("the swearing tic").
Tim Howard (the soccer player) and Jim Eisenreich both have TS.
We're very open about it, please feel free to pass this on to other parents (though many of them may already know, it's always good to let people know ahead of time). If you have any questions, please feel free to contact me or Brian :)


I have mixed feelings about doing this- part of me feels like I should let it come out organically, but that leads to misconception and I'd rather have it just out in the open at the beginning. I have flashbacks to my worst moment with Liam's TS with me standing helpless on the sidelines while the kids on the other team screamed at him to stop making that noise. I wanted to run out on the field and grab him and hug him and bring him home away from that. Instead I waited just on the edge of the field, and smiled at him as he came off and we talked to the other coach about TS when the game was over. It was one of the worst moments of my life. The other coach was fantastic and understanding, but there's only so much you can do in the moment. If it were left to me, we would stick with karate where everyone already knows Liam and just ignores the tics. I know that's not fair to him and not good for him. So off we'll go to baseball and hope for the best.

A Tale of Two Meetings

One big transition that's been weighing on me has been the transition from Elementary School to Middle School. I called the Principal at the Middle School and asked him if we could meet and discuss the transition and what would make it easier on Liam.

Meanwhile, Liam was feeling sort of down one night and asked if I could come and snuggle with him. He started crying and told me that he was being punished at school for using a silly voice. He told me that he hated doing it, it was a bad habit and he just couldn't stop. I asked him if it was a tic. He said, no, it didn't "feel" like a tic, but he really couldn't stop. His teacher has been reprimanding him for it, and some of the other children have been doing it, and Liam's been getting blamed. He said one day, he thinks a chair squeaked and he got reprimanded. My "mama bear" instinct totally kicked in, and I emailed the teacher and cced the Principal to explain that Liam was not able to control it and the reprimanding needs to stop. She said that she asked him if it was a tic and he said no. The difficulty comes into the equation in that hardly anyone with TS JUST has TS. Liam also has OCD, and tends to fixate on things when reprimanded rather than redirected. This is hard for me as his mom to understand and recognize, it must be very hard for his teacher who is dealing with a classroom full of kids, all with different needs. While I respect that, my concern is for my son, not the other kids or the teacher.

My first meeting was with the Principal of the Middle School and the 6th grade team leader. My husband came and we discussed transitioning in general and Liam's specific needs. I was put very much at ease, and feel so much better about the tranisition. They have a sensory break room with a swing and a yoga ball and some scooters. I feel that this is going to be a good break for Liam when he feels he needs to "bounce" and the swing will probably be helpful as well. We talked about the rest of the staff. The last thing I want is for Liam to get punished in the cafeteria or by a substitite and we talked about my concerns. We also talked about the best way to deal with his behavior- planned ignorance and redirection. His seating- not in the front, not in the back, to the side and near the door. Discrete break signals. And where he could go to let out his tics- the bathroom is where Liam will probably feel the most comfortable. They were supportive of Liam coming in whenever he needed to over the summer to put his anxiety to rest, and the Principal suggested that we plan to come a few days before the official orientation for an orientation just for Liam so that he feels more confortable at the one with his peers. We discussed the Teen Ambassador coming in to do a presentation for the older kids who have not been with Liam in a few years and won't know what to expect. I left hoping that the team leader is Liam's teacher, loved her. And the principal was fantastic too.

I've had a very nice relationship with Liam's current Principal. She's been very supportive of Liam. I have had a love/not so love relationship with his teacher this year. It's been a tough year. I want to push him, but also know how tough it gets for him. We decided to leave the 504 plan as is, and I asked her to be very cautious about reprimanding to try to not get Liam fixated on a behavior. I also asked her to email me with things like him being impulsive and blurting things out with each individual instance so that we can try to work on those rather than a general comment of "he's impulsive". She did have some great ideas for Liam, including having him work on his keyboarding skills over the summer so that if he's having a rough time writing he can type. She also mentioned a film program that he might enjoy during the summer, so we're going to look into that for him.

Next to Normal

I had the opportunity to go see Next to Normal at Providence Performing Arts Center. It was such an emotionally draining show- very powerful. The performances were wonderful. For any of you who have been reading my blog for awhile, you'll know the personal struggle I've faced with the medication decisions. I think it becomes normal for those of us facing neurological disorders to discuss the various pros and cons of different meds. I used to be one of those smug people on the outside looking in thinking "I'd never medicate my child, how could people do that to their babies". When you're looking at it from the perspective of what will give you or someone you love some relief from their symtoms, the perspective totally changes. The song that resonated the most with me was "Who's Crazy/My Pharmacologist and I"

Dan:
Who's crazy?
The husband or wife?
Who's crazy?
To live their whole life
Believing that somehow
Things aren't as bizarre as they are?

Who's crazy—
The one who can't cope,
Or maybe the one who'll still hope?
The one who sees doctors
Or the one who just waits in the car?

And I was
A wild twenty-five,
And I loved
A wife so alive,
But now I believe I would settle
For one who can drive.

Doctor Fine: [Spoken]
The round blue ones with food, but not with the oblong
White ones, the white ones with the round yellow ones
But not the trapezoidal green ones. Split the green ones
Into thirds with a tiny chisel, use a mortal and pestle to grind...

Diana:
My psychopharmacologist and I...
It's like an odd romance—
Intense and very intimate,
We do our dance.
My psychopharmacologist and I...
Call it a lover's game—
He knows my deepest secrets—
I know his... name.

And though he will
Never hold me,
He'll always take my calls.
It's truly like he told me:
Without a little lift,
The ballerina falls.

Doctor Fine: [Spoken]
Goodman, Diana. Bipolar depressive with delusional episodes.
Sixteen-year history of medication. Adjustments after one
Week.

Diana: [Spoken]
I've got less anxiety, but I have headaches, blurry vision,
And I can't feel my toes.

Doctor Fine: [Spoken]
So we'll try again, and eventually we'll get it right.

Diana: [Spoken]
Not a very exact science, is it?

Voices:
Zoloft and Paxil and Buspar and Xanax...
Depakote, Klonopin, Ambien, Prozac...
Ativan calms me when I see the bills—
These are a few of my favorite pills.

Diana: [Spoken]
Oh, thank, Doctor. Valium is my favorite color. How'd
You know?

Doctor Fine: [Spoken]
Goodman, Diana. Second adjustment after three weeks.
Delusions less frequent but depressive state worse.

Diana: [Spoken]
I'm nauseous and I'm constipated. Completely lost my
Appetite and gained six pounds, which, you know, is
Just not fair.

Diana, Doctor Fine & Voices:
May cause the following
Side effects, one or more:

Diana & Doctor Fine:
Dizziness, drowsiness,
Sexual dysfunction— Voices:
Headaches and tremors Diarrhea, constipation
And nightmares and Nervous laughter,
Seizures— Palpitations—

Diana, Doctor Fine & Voices:
Anxiousness, anger,
Exhaustion, insomnia,
Irritability,
Nausea, vomiting—

Diana:
Odd and alarming sexual feelings.

Diana, Doctor Fine & Voices:
Oh, and one last thing—

Doctor Fine:
Use may be fatal...

Gabe:
Use may be fatal...

Dan:
Use may be fatal...

Doctor Fine: [Spoken]
Goodman, Diana. Third adjustment after five weeks. Reports
Continued mild anxiety and some lingering depression.

Diana: [Spoken]
I now can't feel my fingers or my toes. I sweat profusely
For no reason. Fortunately, I have absolutely no desire for
Sex. Although whether that's the medicine or the marriage
Is anybody's guess.

Doctor Fine: [Spoken]
I'm sure it's the medicine.

Diana: [Spoken]
Oh, thank you, that's very sweet. But my husband's waiting
In the car.

Dan:
Who's crazy?
The one who's half-gone?
Or maybe
The one who holds on?
Remembering when she was twenty,
And brilliant and bold.
And I was so young,
And so dumb,
And now I am old.
Diana:
And she was And though he'll never
Wicked and wired. Hold me,
The sex was He'll always take
Simply inspired. My calls.
Now there's no sex, It's truly like
She's depressed, He told me—
And me I'm just tired. Without a little lift
Tired. Tired. Tired. The ballerina falls.

Who's crazy— My psychopharmacologist
The one who's uncured? And I,
Or maybe
The one who's endured? Together side by side...
The one who has Without him I'd die...
Treatments,
Or the one who just My psychopharmacologist
Lives with the pain? And I.

They say love is blind,
But believe me—
Love is insane.

Doctor Fine: [Spoken]
Goodman, Diana. Seven weeks.

Diana: [Spoken]
I don't feel like myself. I mean, I don't feel anything.

Doctor Fine: [Spoken]
Hmpf. Patient stable.