Tommy Molter is like any other almost 15 year-old boy: he’s into sports, works hard at his school work, and dreams of being an astronaut. But Tommy is not like any other almost 15 year-old boy in spite of these details. Because Tommy has Tourette’s syndrome (TS).
This is Tourette Syndrome Awareness month, and Tommy, as Tourette Syndrome Association Youth Ambassador for the State of Georgia, graciously agreed, along with his mom, Kerri, to be interviewed by Kars4Kids. What exactly led Kars4Kids to Tommy and Kerri Molter? That would be Brad Cohen, the guy who fulfilled his lifelong dream of becoming a teacher in spite of Tourette’s—the same guy whose life story was the basis for the movie, Front of the Class.
Kars4Kids interviewed Brad, and that ended up turning into a small grant from Kars4Kids to Brad’s Brad Cohen Tourette Syndrome Foundation. The money Brad’s foundation received from Kars4Kids is helping to underwrite the 2015 Tourette Syndrome Conference, to be held June 6 in Atlanta, Georgia. And since the conference is in Georgia, and Tommy LIVES in Georgia, Brad reached out to the boy to ask if he’d like to give a workshop on Tourette syndrome advocacy.
Now that’s a big responsibility to put on the shoulders of a young man just getting ready to go into high school. But Tommy is not just like any other boy: this is a kid with grit. And after speaking with Tommy and his mom Kerri, Kars4Kids has no doubt that this particular teen is up to the challenge. Read this and judge for yourself.
K4K: What are some of the challenges you’ve faced as a result of TS?
Tommy Molter: I’ve faced a lot of challenges in school, because the teachers don’t really get it and don’t seem as if they want toget it. I have really mild Tourette’s. Since my teachers don’t see my tics that often, it may not look to them as if I have Tourette’s. Sometimes they doubt I have Tourette’s which is a problem when I need to ask for help.
Kerri Molter: When Tommy was younger, his tics were more bothersome—weren’t as mild as they are now. As he’s gotten older, the tics have lessened in severity and he’s learned to kind of mask them a little bit better and I think right now, the issues come more from the Obsessive Compulsive Disorder (OCD), than from the Tourette’s. OCD is often comorbid as one of the things kids with Tourette’s have.
I have discussions with teachers, they say, he’s just faking it. And I say to them, “Oh, no he’s not! If you would just read the information I’ve given you, you’d know he’s not faking because his tics bother him more than they do you.”
Tommy: It really does. I can’t imagine living life without Tourette’s but I’d like to know . . . (Kerri cuts in).
Kerri: He’d like to know what it’s like to live life without Tourette’s! (both laugh)
He’s had trouble making friends and keeping friends not necessarily because of his tics, but also because of his quirks and OCD and other things. With OCD things have to be a certain way and no other way or he gets angry and he has trouble managing that anger. If people interrupt him when he’s doing something, the flow of his OCD is interrupted and he’s got to start all over again. I’ve explained this to two of his teachers and they choose to believe this is something he can choose to control.
Tommy doesn’t have a lot of friends, but I think it’s more because of the quirks. They don’t want to get to know him and they judge him because of that. He’s made comments: ‘I’m nice to everybody I try to be nice to everybody, but then they’re looking at me in the hallway, and they see someone with three heads.’
As a mom I say, just keep going and some day someone will see past the stuff you can’t help and really get to know you!
Tommy: That’s why people really need education! They need to learn about Tourette’s.
Kerri: And that’s why Tommy really wanted to be an advocate for Tourette’s because he wants to help tell people about Tourette’s.
K4K: Tell me about that.
Kerri: We went up to [Washington] DC in March, he was given the tools, and taught how to give a presentation to a large number of people. It’s a good thing, because he’s done this before, and it was good, but he wasn’t quite able to convey what it’s like to have Tourette’s.
When he was in 4th grade his teacher allowed him to give a presentation to his whole class, he wrote it out, I helped him and he gave a little speech about OCD and Tourette’s and he got a lot more understanding after that.
Tommy: After that, if someone was bugging me, the other kids would say, “Hey, leave him alone.”
Kerri: The school actually switched him out of a class because of a known bully, and then teacher in fifth grade allowed him to do the same thing and give a presentation to the class about Tourette’s.
Then we moved and we asked if he could do the same thing for Tommy’s sixth grade classroom but they said, ‘No, no. You’re not going to have a problem with bullying in this school,’ and the truth is, we haven’t.
But I think the presentations, the advocacy, goes a long way toward helping to include him. So this year when he applied and was accepted to be Georgia youth ambassador, we went up to the principal—I love him he’s amazing—I told him, can he please give his speech? It was toward the end of the year with finals, and he said, well, let’s let him get his feet wet with a smaller group before we give to a larger group, and of course it never happened because it was the end of the year. I’m hoping that the school will welcome him back to give a presentation. Even though he’s in high school he can still advocate for them!
K4K: Tommy, how do you think it will be for you in high school? Will you manage to carve out a place for yourself, make friends?
Tommy: I swim, do cross country and track, and I’m hoping I can gain friends through that. Maybe with the older crowd in high school, maybe not, but maybe, in high school, I can reach a bigger audience to try and put the word out about Tourette’s.
Kerri: I think too, that having the title Georgia Tourette’s Youth Ambassador, that he’s gone and been trained and has the title behind his name, and isn’t just some random guy, maybe he’ll have the ability to make himself heard. I’m still going to encourage him to speak to the high school, to make his presentation there. He was trained to give his presentation to a whole gym full of people. I think that even though he’s going to high school, I will encourage him to go ahead and give his talk.
Tommy: Of course, I want to get the word out and advocate for Tourette’s, but I want other people with Tourette’s and even those without Tourette’s to advocate for Tourette syndrome.
Kerri: On June 1st, he starts cross country training and I’m hoping it will give him a leg up on making friends with at least the kids in cross country. And then they go away to spend the whole week at the beach and they’ll be spending lots of time together. Kids with Tourette’s want and deserve friends just like everyone wants and deserves friends.
K4K: Tommy, what do you want to be when you grow up?
Tommy: I want to become a pilot in the navy. I want to go to the naval academy and after that, I hope to become an astronaut at NASA. Or maybe in the private sector for the commercial space program.
K4K: Commercial space program?
Kerri: Yeah, I know. But there really is such a thing. Tommy could tell you all about it. People with OCD are into research. Tommy has always been into space. It wasn’t just talk about being an astronaut, even when he was small. It came from wanting to be a navy pilot. Unfortunately, people with Tourette’s are currently banned from the military as pilots.
Tommy: But I’m hoping to change that!
Kerri: If his Tourette symptoms stay mild enough, Tommy is hoping he may be able to convince the Navy to take him. A woman with Tourette’s, a friend of a friend, has been trying to convince the military to take her. She’s had 13 rejections due to her Tourette’s syndrome, all 13 of them framed on her wall. She’s determined she will be an astronaut. So is Tommy.
K4K: It’s understandable that a pilot has to be understood by his crew, and that motor tics, for instance, might cause a crash. But I’m not hearing any verbal tics during this interview, so I’m guessing Tommy’s tics are pretty mild. Wouldn’t that be taken into account?
Kerri: Actually, the first tic Tommy had was verbal. He’d make these huffing sounds like he was hyperventilating. We were always telling him, “Stop those mouth noises!”
But the thing is, there IS no grading system for Tourette’s. One in one hundred kids has Tourette’s syndrome. It worsens during puberty and usually settles in adulthood. But it never goes away. It waxes and wanes. There’s no “mild.” There’s moderate to severe
K4K: So when Tommy made those huffing sounds, is that when you knew Tommy had Tourette’s?
Kerri: No. I had no idea. The thought never entered my mind. I pretty much knew he had OCD, even as a toddler. We had him in therapy for OCD at one year old. But in pre-k he started those mouth noises and he was always making sounds like either a car or a train. But he knew everything about trains. He LOVED trains.
Tommy: I like to think that OCD is a blessing. All my clothes are color coordinated and put in color sections in my closets. I have my pants and then I have all my shirts and then all the colored shirts are in their own section and within their own color sections along with t-shirts with collar and long sleeves, and long sleeves without a collar. It makes it easier to get dressed in the morning!
Kerri: My poor child was born to the wrong mother because I am the complete opposite. To go into my closet is to enter chaos. Some clothes are on hangers and some on the floor. I am more of a schedule person. When I go out of my routine I cannot have a coherent conversation with someone.
This poor kid, his whole life, everything has to be just so and everything causes him great anxiety when everything is not just so.
Tommy: Whenever I get ready to go into the shower, I do everything according to a certain order and if someone interrupts that routine . . .
Kerri: What happens? He gets very angry and when he was younger, he’d have to start all over again.
And when he was younger, he was late a lot. Because if his routine got messed up, having me rushing him was actually making things worse. I actually had Social Services call my home because he was late to school so often! I told them: look, I wish you would look up his record at school, because he has OCD and if you know anything about OCD, you know his lateness is due to the fact that if anything interrupts his schedule, he has to start over again, and it’s on his medical record.
K4K: Wow. But it sounds like you’re no longer showing up late to school. What about the Tourette’s? Do you have problems with tics in class?
Tommy: No vocal tics. Even facial tics, I only really have a neck-popping tic and occasionally a finger-popping tic.
Kerri: I beg to differ. It’s not so occasionally, the neck and finger-popping. But the motor tics have always been more bothersome. His first motor tic was when he was really little. He started blinking, really hard fast blinking. It was so bad we took him to an ophthalmologist because we thought he might have a scratch on the cornea. It just started overnight! None of us had ever noticed a thing before that day. But we checked his eyes and nope. No scratches. Nothing.
He continued on with the blinking and then he started this sort of shoulder-twitching. It looked like he was flexing his muscles (laughs). His pre-k teacher was the first to suggest to me that Tommy might have Tourette’s syndrome. She had a good friend with Tourette’s—in fact this teacher and I became good friends and we’re STILL good friends—and she called up that friend and said, “How do I gently break the news to her that her son has Tourette’s??” and the friend suggested she give me a book on the subject.
I didn’t believe it. It’s genetic! No one else in the family has Tourette’s. But the book included a tic list and I ended up checking off every tic in the list. I showed that list to my husband and I cried. Of course, we took Tommy to a neurologist. He had to be watched for a year, had all sorts of tests including an EEG to rule out other things, and of course, they discovered Tommy also has ADHD and OCD, and probably every other combination of the alphabet you can think of. But he’s very strong willed. I’ve always thought that Tommy will be able to do whatever he puts his mind to.
K4K: How did you meet Brad?
Kerri: I went to the conference last year and then I went up to him and said, “Oh my goodness, my son would love to meet you!” And he said, “Well, we need to arrange a meeting!”
But somehow it never happened. Then Brad was planning this conference and found out Tommy was Georgia youth ambassador so he called and said, “I’m thinking of having Tommy run a workshop for the kids, do you think Tommy would want to speak?”
We went to meet him. He is one of the nicest people you’d ever want to meet.
K4K: How did Tommy become a TSA Youth Ambassador?
Kerri: I’m on several Tourette’s boards and people were talking about different conferences and I said, “Tommy has always wanted to be a youth ambassador,” and so someone messaged me and said, “You should apply.”
Tommy: I sent an essay of my life story and explained why I thought I’d be a good Tourette’s youth ambassador. I applied and the Tourette’s Association accepted me as Georgia youth ambassador. I went up to DC for training.
K4K: And what was that like? I imagine you were with a bunch of other kids with Tourette’s. That must have been amazing for you!
Tommy: We all bonded really well. We were all hanging out at the hotel, hanging around with each other. It was a great experience, a lot of fun.
Kerri: There was this immediate rapport. They were all different ages, but that didn’t matter. They all bonded over this same uniqueness they had that is Tourette’s syndrome, and they were like, “See ya Mom, see you Dad and they were GONE.”
Tommy: We all talked about how we wished we had our own community, like a band of sisters and brothers. I’m sorry they live so far away.
Kerri: But I think these friendships and bonds are going to last forever. We watched them all get to know each other so quickly. As a mom, you’re like: so why can’t everyone see them as they see each other?
K4K: Tommy, are you nervous about that workshop you’ll be giving at the conference?
Tommy: No, not really. I have the necessary tools to do this. And Brad tends to agree with me. He was wishing there were more kids that were coming for him to reach [note: there’s still plenty of room left for more kids at the conference!].
Kerri: I think this is only the second conference that Brad is putting on and I think that once word gets out how great it is—I went to first one and loved it, that’s why I’m going back—and I think once people hear what the kids conference is all about and what they can learn and get from it I think they will be more likely to bring their kids next year, so we can reach a broader audience.
K4K: Does Tommy have siblings? How does Tommy’s Tourette’s affect them?
Tommy: I have two younger siblings, a little brother, Presley (7) and a younger sister, Audrey (12).
Kerri: There have been times when his tics were so bad it looked like he was convulsing on the floor. He’d cry out, “Mommy! Please make it stop. And I’d hold him because I wouldn’t know what else to do. We’d be in almost in a fetal position. And I’d just hold him. He would be ticcing so hard my whole back was shaking. And if we were on the couch and the other two kids were sitting there, watching movies or something, the whole couch would shake.
Springtime was always the worst and of course, going back to school in the fall was pretty bad, but summer the easiest. One year he had this spitting tic, he HAD to spit! He was in second grade and inside or outside, it didn’t matter: he had to spit.
He would spit into a tissue. It lasted for about a year. I remember we were at a Fourth of July celebration and he was spitting a lot, over and over again, and people were giving him dirty looks. Finally, I said, “I’m really sorry he’s spitting. He has Tourette’s syndrome and he has to spit,” and they said, “I’m sorry,” and that was that. They didn’t say anything else, or at least not where “Mama Bear” could hear it!
It never really bothered Tommy’s siblings, the tics. But he would have vocal tics. And they’d say things like, “UGH, can you please stop?” and he would get his feelings hurt and I would say, “No. He can’t stop.” and they would say, “Yes, Ma’am.”
They’re really great kids, they think Tommy’s pretty awesome most of the time. They’ve accepted his Tourette’s and they know. When Tommy has a new tic and none of us know, they know: it’s a tic.
K4K: Tommy and Kerri, we’ve come to the end of the questions. Is there anything we haven’t covered that you’d like to say? Something you want people to know about Tourette’s syndrome?
Tommy: Tourette disorder does not affect your intelligence. There are a lot of people with TS who are very successful, who do well in school and in life. Teachers think: you’re very smart, you can’t have Tourette’s. They say it’s not true, that kids with Tourette’s are faking it.
Kerri: That’s right. I’ve had to fight teachers and administrators, for instance to help get Tommy’s 504 accommodations. I was told he’s in advanced classes, his grades are too good. He doesn’t need one. I’d say, you don’t understand. He needs preferential seating. He has OCD. He has a hard time when he’s ticcing. He needs a safe place so all eyes aren’t on him when he’s ticcing.
He’s really smart, so they don’t see it.
I had to fight two or three years before they would finally give him the accommodations until I threatened them with the Americans with Disabilities Act. So then they said, “Well, maybe he does need a 504.”
You mean because he’s struggling so hard and getting such good grades?? He’d come home ticcing so bad, try so hard to hold the tics in while trying to listen in class. He was an emotional wreck, exhausted, trying not to draw negative attention to him in class. I said, “I could videotape him at home and show you,” and the principal said, “Well, I could videotape him here at school and show you how normal he is!”
But Tommy wouldn’t let me. Just trying to get through homework in the afternoon with his head tics and finger-popping it would take him hours to get through his elementary school homework.
Tommy: I want to get this across: Tourette syndrome has nothing to do with intelligence. In fact, I believe Mozart had Tourette’s. It’s in his correspondence with his sister.
K4K: Really?? Now THAT’S cool.
For more information about how you and your children can attend Breaking Down the Barriers, the 2015 Tourette Syndrome Conference, visit the conference website here: http://tourettesyndromeconference.com/