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.

Dysinhibition

"The phenomenon known as dysinhibition is characterized by difficulty consistently

inhibiting thoughts and/or actions. Inappropriate statements or behaviors very

frequently result from the student's inability to consistently apply "mental brakes".

Dysinhibition means that a child cannot stop himself from expressing behaviors,

thoughts, or displaying actions that someone else may more easily be able to control.

Such behaviors might be displayed as excessive silliness, being sassy, freeassociative

comments, emotional outbursts, contextual swearing, blurting out,

inappropriate comments explosive anger and oppositional defiance. Picture a sign

that says, "Don't Touch, Wet Paint". For many of us, the sign is an invitation to touch

the paint. We must fight the urge to do so if we are to obey the sign

and the norms of society. We must inhibit the very behavior that has been suggested

to us by the sign. We can easily recognize inhibition as being difficult for all children

when we think of puddles on the sidewalk that are just begging to be jumped into.

Inhibiting behaviors is challenging for all children but it presents a far greater

challenge for students with TS due to this neurological disorder. We must understand

that this is not purposeful disobedience but is merely a function of the brain that is

affected by the chemical imbalances that cause TS.

A young boy's teachers had a difficult time believing that every time this second grade

student said something inappropriate or acted in an impulsive manner that it was a tic.

It is helpful if we understand that Tourette Syndrome is more than tics, and recognize

that many of the difficulties a student is experiencing are "symptoms" rather than tics.

All too often we think of verbal and physical tics as being the only symptoms of TS.

Many students whether they have severe or mild physical and vocal "tics" also have a

significant difficulty with the invisible but extremely disruptive symptom of dysinhibition.

Therefore when this student is told that his turn on the computer is over and he makes

an inappropriate remark, it is indeed a symptom of his TS. In these instances, it is best

to ignore the symptom, but to include counseling support as an accommodation in

order to teach him techniques that will help him to recognize that his “brakes" do not

always work well. Over time, he may learn to substitute a more appropriate behavior

but since the actions are impulsive, it may require a great deal of practice and

patience on everyone's part." From http://www.tsa-usa.org/



I'm having a tough time with making Liam's teacher understand this piece of the puzzle. I get that she wants to be firm.
I want to cry and yell and tell her to be nice to my kid so that he won't hate school.

Book Group

I have a very nice group of friends who I mostly met at the gym. We decided to start a book group. Yesterday was our first book group meeting in awhile. The book for this month was "Against Medical Advice" by James Cameron. I'd heard about this book on the Tourette Syndrome Association facebook page. Many of the people there warned that this was not a book that parents of newly diagnosed kids with TS should read, as it would be terrifying. I do have to admit that there were some sweaty palmed moments. The funny part of this is that I don't think the sweaty palm moments were probably the parts that my friends thought were terrifying. Most of the scary parts for my friends were what was going on with the drugs surrounding TS. Sadly, many people still do not understand that TS is not just a "tic disorder". Anyone diagnosed with TS is also diagnosed with a whole slew of other disorders. And as children grow, the associated disorders change. What needs to be treated the most changes as well. Our own struggle with the drug decision has been to medicate or not to medicate. For many it's how much medication and what combination. There's discussions of which disorder is causing most of the problems, and if we treat for the OCD, the anxiety is going to worsen so we have to treat for that as well.

For me  relating the book to our own family,  considering a family history of alcoholism on both sides, one of the most terrifying parts was the thought of Liam ever feeling the need and desire to self medicate with alcohol and drugs. We're working really hard with his therapist to come up with a plan for how to deal with his feelings and anxiety.
One of the other scariest parts for me, which I thankfully have not seen in Liam, is the self destructive compulsions. I watch friends of mine struggle with this and worry about them. In the booksome of the compulsions include: pulling the steering wheel of the car or climbing up a tree to the highest point possible even after falling through the branches. While I don't see this in Liam, I have friends who are going through these types of things and it scares me so much for them.

I'm thankful that my friends were so excited to read this book and gain a better understanding of TS.

I'm thankful that my friends were