School giving me a very hard time about a 504 plan

Seated at the center of a half-circle desk, I try to adjust my posture to fit. This is impossible — I am sitting in a chair made to accommodate a 5-year-old. I am 5-foot-8, and my knees form a peak higher than the edge of the table.  I don’t feel like myself at all. I have a head cold and I forgot to take medicine before leaving home.

The boy’s school smells of old cafeteria food, and I am overwhelmed with childhood memories of not knowing which lunch table to pick. I wonder silently if awkwardness is genetic? I decide that it must be and I know he gets it from me.

In attendance at the meeting are the boy’s teacher, an occupational therapist, the school’s psychologist, the school’s counselor and a few administrative people that wander in. Two people admit to seeing e-mails about the boy and the meeting, but they are turned away at the door. They don’t need to be there.

I am shocked by the loose communication practices and wonder about my privacy. I try not to let that bother me. I am too busy feeling outnumbered, and my confidence is shrinking. We start with introductions and I don’t shake hands but warn that I’m not feeling well. I secretly hope they will take it easy on me — I can’t explain why, but I feel like they are their own team.

We are here to finalize a 504 Plan. This is spurred by the boy’s teacher asking him to cease ticking/stimming in class. He is having trouble toileting, transitioning, following social rules, abiding by school policies concerning personal space and walking in line. If only I had sent him to school with one his special T-shirts on…you can read more about what this means for children with disabilities here. Continue reading

Saving for Brain Balance — no obligation to buy!

Stink’s tics are still pretty yukky. I’ve decided to go full bore and save for Brain Balance. This is the one time I will mention here that I am accepting donations for this. Please don’t feel obligated give me a penny. I’ll keep on writing here forever. I just figured, with so many people with less worthy causes making $ off their blog, I would finally try and create a small stream of income for something I find quite worthwhile. I am also open to notes here that tell me I’m extremely tacky to do this. I would not disagree. At the same time, after wrestling with this for a year, I decided that there’s no harm in asking.

Cool T-shirt ideas for Tourette Syndrome and Asperger’s

EDITOR’S NOTE: Please welcome KielM to TSParentsOnline. She is the author of the Momma Has Monsters blog, and she will be blogging here from time to time now as well.

Sometimes I think this would all be a little bit easier if I just had a quirky shirt for my boy to wear every day of the week. Because one of the trickier parts of neurological disorders is that they can be totally invisible to the untrained or, as I like to call them, “judgey eyes” of the not-so-well-meaning public.

So what looks like a typical kid acting like a hyper jerk could actually be a child with special needs coping with their environment the best they can.  What I’m getting at is, I get it. People will stare. People do stare — a lot. I should at least be able to mess with them a little if they can’t keep their horse eyeing to themselves! 

That brings me my list of shirts I wish my 5-year-old boy could wear: Continue reading

Help me cure the one thing I hate about having Tourette

Having Tourette has definitely made my life different. It’s hard to be “normal” when I’m always drawing people’s attention for the weird sounds I make or the odd behaviors that I just can’t stop doing. I avoid a lot of situations especially crowded places where people stare and sometimes openly laugh. I deal with aches and injuries when my tics get bad.

On bad days it can make it impossible to work with my hands, a big problem for someone who works with tiny pieces of wire. I wait for movies to come out on DVD rather than risk upsetting other movie goers with my often loud vocal tics. When I was in school, my outbursts were disruptive to classes, teachers were often frustrated with me and other students weren’t exactly accepting of my weirdness.

As many negatives as Tourette has brought to my life I’m not sure I’d ever want to get rid of it. With all the bad it has also brought good. I am a different person with Tourette, a better person, than I would have been without it. I know what it’s like to be different and I’m a more accepting person for it.

I grew up knowing I was different but not knowing why. I remember how that felt so now I make myself available to parents of children with Tourette to help them understand what their children are going through. I know what it’s like being bullied and having no one stand up for me. I also know what it’s like to have that one person stand up for me so I try to be that person for others. I like the person I am and I’m sure that had I not been through the struggles of life with Tourette I would not be the same person.

If there were one thing I would change it would be people’s perception of the disorder. Continue reading

“Tourette Syndrome: The Facts” video translated into Chinese

Hello, I’ve decided to make a Chinese translation of my Tourette Syndrome: The Facts video that I debuted last month. A big thanks to Ben Smith, who is my nephew and a preacher who has taken up Chinese to continue his ministry. I’m very grateful for his help with the Tourette Syndrome Awareness Chinese text translation for this video!

The ddea for the video came from talking to Chinese family in China who had never heard of TS, so I thought it would be a good idea to make the TS facts video in Chinese! Be sure to check out a couple of my other videos, one introducing the facts video, and another talking about my motor tics. Enjoy!

Channeling energy, not suppression, can help Tourette Syndrome

EDITOR’S NOTE: The following post was entered on our Facebook page the other day. It’s from the leader of an online community called Collectively Conscious, who has Tourette Syndrome and associated disorders such as ADHD.

I would just like to share that I, myself, was diagnosed with Tourette Syndrome as a child — kind of like a more intense case of what doctors term ADD or ADHD. And for years they tried to suppress it with medications like Valium, Clonidine, and eventually, when it was at its worst, Haloperidol (Haldol), an anti-psychotic.

The first two made me feel as if I was hardly alive, hardly present — like I was walking through some sort of dream. But the last one, Haloperidol, nearly killed me. I woke up one morning, a few weeks after being on it (age 12) and couldn’t move a single muscle in my body, except for my eyelids. Continue reading

My 9-year-old son is becoming his own advocate

Jaden was diagnosed at 4. Last year at age 8, I finally broke it to him that the reason he made these noises, etc., was because he has Tourette Syndrome. After the natural reaction of crying and self-loathing, he immediately began to research it. He read all about it. Still, he was NOT comfortable talking about it and definetely refused for his classmates to know.

This year, it’s different. I have worried myself sick thinking he will be so stressed and come home and tell me he hates school. Not the case. This year, I called a meeting with his teachers, counselor and principal. At the meeting, I made sure to bring along pamphlets about TS, etc. Most importantly, I brought Jaden with me.

He sat at the head of the table. He was very excited and eager to share his symptoms, which shocked me. They were impressed with his terminology, knowledge of the syndrome and his coy way of explaining himself. He is pretty much telling a new classmate daily about TS. He is allowed to go to his bus early to avoid large crowds during dismissal (504 accommodation). He has a “bus buddy.” He has 7 children to pick from. He “randomly” alternates turns of who he can take with him to the bus.

Today, he told Jenna after she asked, “Why do you get to go to your bus early and I get to come with you?” He says, “It’s a long story, we don’t have time.” Jenna says, “We have nothin’ but time.” He answers, “Well, I will give you the long story short, I have TS!” She of course answered, “What’s that?” He answered, “When I was 3, I got this thing called TS. It makes me tic and make noises. It makes me have OCD and makes me anxious, and I have to take frequent breaks. And that’s why I get to go to the bus early, to avoid large crowds cause it makes me worse.” Jenna answered, “That’s cool, thanks for picking me today.”

All in all, I’m very pleased with his explanation of TS and his way of explaining it in a nonchalant way. Genius actually. 🙂 Mood: Grateful and Optimistic!

EDITOR’S NOTE: Jaden is a blogger for TSParentsOnline’s sister blog, Teens4TS. Check out what Jaden’s been writing about and encourage him with a little interaction!

My son’s “Tics and Tourette” speech went really well!

In my last post, I talked about how my son, Stink, had a big speech in school about Tourette Syndrome. The speech went really well. With the dry-erase board in the picture above reading “Tics and Tourette,” the speech went basically like this:

A blond-haired boy, STINK, shuffles in front of the classroom in a too-small Scooby Doo shirt. A bleary eyed MAMA and protective younger sibling, PIP, stand to the side.

Teacher: I’d like all of you to turn your attention to Stink, who is going to share something very personal. It is very brave of him to be up here, so please, show your respect.

Quiet all around.

Teacher: So, Stink? Why don’t you begin?

Stink: Okaaaaay. Well, um… see… I have Tourette and tics. That means I tic. Yeah…. that’s about it.  (Long pause.) So… Mama?

It might be the first time in this young boy’s life he is speechless. This does not forebode well for his Clown College culmination talk, where he graduates Magna Cum Loud Mouth.

Mama: You want me to talk now?

Stink: Yeah… give some more details. Continue reading