Teaching the teachers about TS

We had a 504 meeting the second week of school. It was both of us, the psychologist, the counselor, all 3 teachers, and the principal joined us midway through the meeting. We tweaked his 504 and discussed a lot of what had happened last year. The teachers were very excited about him and said they loved having him in their classes.

Last week they said they wanted to set up another meeting to talk about how we can meet Jacob’s needs so he can be successful. While this sounds benign and helpful, all I can think about is what happened last year and how a teacher with a TS nephew wanted to “help” Jacob.

She punished him for tics, wouldn’t help him remember to turn in his homework, marked him down for missing assignments that he had completed but forgot to turn in and treated him like an idiot. She blamed him for everything and always believed his classmates over him.

For someone who supposedly has a relative with TS, she sure didn’t know much about it, other than the tics. Later in the year, she said her nephew was very noisy and made a barking sound. She was clueless about the behavioral issues. So to say I am nervous about meeting with the teachers is a huge understatement.

Become more supportive of advocacy efforts

Awareness. Acceptance. Action. Advocacy. All needed when it comes to informing people about Tourette Syndrome at the national, regional, state and local level. Our Facebook page (give us a “like”! :) ) is dedicated toward these very things, especially when it comes to supporting the proposed federal Tourette Syndrome legislation.

Yes, we have a request of you. And no, it won’t take more than just a few seconds. If creating a better future for children with Tourette Syndrome is important to you, then there should be no reason why you don’t click here and support the proposed federal Tourette Syndrome legislation.

You can leave your Congressional representative a note just like this one and show them that Tourette Syndrome legislation is important to you, just like it is in Kansas:

lam198 in Kansas’s 3rd District

I have been dealing with Tourettes since I was 8 years old. I am now 32 and doing well but it has been a long road. I hate my tics and they sometimes caused me problems. Over time I have grown to accept my tics as part of me, as well as others around me. I was not diagnosed until I was 16 and I think if I had been it would have been easier on me socially. I 100% support research of Tourette’s Syndrome. Just like anything else, Tourette’s Syndrome will take time and money to find a cure or better treatment for. I have been luck with my medications but so many people take medications that cause them unwanted side effects and can even cause sterility in women. Since I have become more accepting of my condition I have become more and more supportive of advocacy efforts toward the research and education of Tourette’s Syndrome. Please allow this bill to pass.

One small change and his world falls apart

Jacob’s teachers laughed at me last year when I said that even one day with a substitute teacher would throw off his entire week. They thought I was crazy, I guess.

Today was one of those days that his world is completely off. Daddy’s out of town and I was at work late, so he and his siblings spent a few hours with their grandparents. They love spending time with their grandparents, but it’s just not part of the daily routine during the week. Once I got them home, it was like all heck broke loose…

Jacob couldn’t stop saying “Farty fart fart” and “Thingie and a thingie.” These are two of his most-used phrases. “Thingie and a thingie” used to actually be “Thingie and a thingie and a blah blah blah.” I’ve heard it’s from a movie, but I have no idea which movie that is.

Anyway, with Daddy gone, he couldn’t stop ticcing and saying his phrases long enough to read 20 minutes. I heard all kinds of random words coming from the kitchen while he was trying to read. I almost told him to not worry about his reading tonight because he just couldn’t settle down. The timer rang and I let him count it as his nightly reading for school, but I know he probably didn’t read much.

Tomorrow he will be really off, too. I wish that it wasn’t like this.

So I wrote all that yesterday and the evening was super fun after that. My 2.5-year-old threw up in his bed so I had to clean him up. Them my 8-month-old was up screaming. It was chaotic. We apparently have a stomach bug going around. This morning, Jacob and my 7-year-old had it. They made it through the day.

But yes, as I anticipated, Jacob’s off today. Again he can’t settle down to get his homework done. He keeps talking to himself and making noises with his mouth. To totally tap out his sensory chaos, he’s got a loose tooth that’s driving him nuts. I’ve always had to pull them out because it bothers him so much. He hates wiggling it and just wants it out.

I thought about him all day today. I know people always assume that someone with Tourette’s yells out curse words all the time. I wish I could shake them and tell them that’s so not true. Jacob yells random, totally inappropriate things and completely inappropriate times. I wish people understood that TS is so much more than the stupid media portrayal. I wish I could educate everyone on it so that they understood that TS is not something you can control.

We just want our son to be happy

When you find out you’re pregnant, you are the best parent you will ever be. Everything you do will be perfect, your child will be well behaved with good manners, an excellent student, an athlete, president of the student council, or join every club you did.

The first time I felt Jacob kick I knew that was my little soccer star. As I planned out his childhood while pregnant, he continued kicking and pushing on me. The first time the doctor put him on my chest, I felt fear like I have never known. How do I keep this baby alive, much less turn him into the soccer star I imagined?!

Today, I got mad at Jacob for repeatedly telling me the same story I told him last week. He always repeats my stories back to me several days or weeks later. I used to think he was searching for validation or something like that. Now I know he just can’t help but do it, no matter how many times I tell him to stop.

I have to remember to breathe, tell him it’s OK, but no, it’s really not a good time to rehash my latest story. I close my eyes and remember the first time I saw him in the delivery room, how perfect he was, and how everything changed for me. Little did I know that he would eventually change me in ways I could never have imagined.

His first year was a blur. He was so busy, always moving, laughing, kicking, wiggling, and entertaining us with his silly ways. He was adorable and sweet but BUSY. He has never been still. He eats well and always has. He was spirited as a toddler. We did the terrible two’s for two years with him. When he was almost 3, we had our second son.

Jacob was loving with him after getting over a bit of jealousy. But it took another year for his behavior to improve. He wouldn’t sit still for story time and hated being read to. He wanted to be up and playing. He wouldn’t stop to color. He slept pretty well but that wasn’t surprising because he was always going when he was awake.

Around the age of 4, I started noticing things — little oddities here and there that I couldn’t put together. There was just something different about him that I couldn’t put my finger on. Continue reading

Poetry: “Tourettes In Slow Motion”

Wishing to be invisible, I freeze as I sit.
Freeze into a place, a place I don’t fit.

I tense, I try to fight this urge,
Like fighting against a power surge.

The build up so great, nothing can stop,
This feeling inside me, its time, I pop.

Eyes in the back of my head gaze around,
Gazing to see reactions of that sound.

Wishing to be invisible, I freeze as I sit.
Sinking into a bottomless pit.

This is the process, the process in slow motion.
Over and over, I fight these emotions.

Copyright @ 2010 (Emma Stent)

My story: 2 of my 3 boys have TS

TS is a complex disorder that can cross over with others! I have two out of 3 boys with Tourette. My oldest is 15 years old and started with tics at 3. He was misdiagnosed by the children’s hospital in Akron, and when things got worse he was misdiagnosed by them again at age 8!

Noah kept getting worse, and it wasn’t until we took him to Cleveland Clinic at age 13 that they finally properly diagnosed him with Tourettes, OCD, Executive Function Disorder and Dysgraphia! He gets good grades but has poor writing and study skills. Noah has head tics, nasal snorting and throat clearing.

My other son, Damien, was diagnosed at 3 with Tourettes and OCD. He clicks and puts things in his ear. He turned 6 and was recently diagnosed with High Functioning Autism by his pediatrician and his neurologist . Damien is 6 yrs old, still soils his pants and has had rectal prolapse 3 times. He spins, flips, skips, hand flaps and has meltdowns. He has to start kindergarten in a pullup.

My middle son is 12 and has inherited my mixed connective tissue disorder. I also have lupus. It’s crazy, and I feel that people judge me, but that’s their problem — I have enough to deal with!

What Makes Us Tic awareness project

Tourette Syndrome needs more awareness. Bella has made a great documentary to help raise more awareness, but she needs a little help to improve her documentary and get it out where it will be seen. It doesn’t take much to help. If every person who reads this blog contributed just $6.50, she would have the funding she needs. That’s not too much to ask for a little more awareness, is it?

Replace fear with faith

I speak to so many of you worried mamas offline. I was once like you — scared about the future, dreaming of fearful “what-if” scenarios, wondering if my kid jumped up and down in excitement over a surprise Disneyland trip if this might, in turn, make him jump up and down 1,000 more times and he’d develop a compulsive tic that resembled a springy clown from a jack-in-the-box.

In fact, what if he started obsessing about clowns or, worse, started shouting the word “Clown! Clown!” when he was supposed to be sitting quietly on the tram or paying attention in Circle Time?

I want to tell you that none of those things ever came to pass which is a great thing for me, my kid, and any people on public transportation or at public school who have a terrible phobia of clowns.

What I did start doing, however, was the best thing that could ever have happened since my son’s TS diagnosis. It was a cure I didn’t think would be more powerful than a Tic Tamer, Bonnie Grimaldi Vitamins, NAC or Gluten Free/Dye Free/GMO organic elephant poo from India — but it really was magical. It was called Faith over Fears.

“Oh, man, this is not what I wanted to hear,” some of you might say. (In fact, you one mama in the Midwest who has been Googling for cures all night… I just heard you groan from here.)

To your “arrgs” I want to say, “I know. I wouldn’t have wanted to hear my advice at the beginning either. But I wish someone would have told me anyway, because it’s the best cure there is.”

It looks something like this: Continue reading

“Perfect” is perfect!

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Recently, a number of films have emerged that depict Tourette Syndrome faithfully and expressively, such as Different is the New Normal and the short films in the beloved @RANDOM series. It comes as no surprise that these are all documentaries, with real subjects. Representing TS in a work of fiction is either very challenging, or else highly exploitative, often relying on coprolalia and little else.

Enter the brand new short film Perfect. It’s both fictional, funny, and a fair portrayal of TS Plus. Not only that, it’s Canadian! Perfect is the brainchild of filmmaker Karim Ayari of Ottawa, Ontario, who has Tourette Syndrome and Obsessive-compulsive Disorder himself. You can see an interview with Karim along with more details about the film here.

Karim’s film is in competition in the CBC show Short Film Face-off, and it was broadcast nationally in Canada on August 17. In the meantime, you can see Perfect in its entirety here:

We wish Perfect all the best at the competition, where it will vie with other films for the top prize, with the winner being announced on September 7.

Why is this so hard to understand?

One of my pet peeves. I try to acknowledge the fact that I have TS because my tics are obvious and instead of getting an “Oh, OK” or some other brief acknowledgement of understanding and move on, I get people telling me I don’t need to apologize for my disorder. I just want people to understand what they are seeing/hearing, no apologies unless I throw something at you.