2012 New Jersey Youth Ambassador had a blast in D.C.

My daughter Sarah and I were in Washington, D.C., from April 18-19 for the National Tourette Syndrome Association Youth Ambassador
 Leadership Program. Sarah was chosen as the New Jersey TSA Youth Ambassador by the New Jersey Center for Tourette Syndrome. We both had a ball!

From left, New Jersey National Tourette Syndrome Association Youth Ambassadors Sarah Ethridge, Amanda Silvers, Tommy Licato and Anna Baldwin with New Jersey Senator Frank Lautenberg.

Sarah and I left with renewed
 strength to continue our goal of educating everyone we come in contact 
with about TS. The material NJCTS sent us with was wonderful and kept us 
in front of the curve. It also was helpful for Sarah because she was 
able to give six peer-to-peer presentations before we left for D.C.

Having 
spoken to 200 classmates was invigorating and cathartic for Sarah. All 
around, it was a great experience!

 Sarah and I are starting to put together her brochure and letters for 
more presentations.

We’ve spoken with a few principals in our district
 (Chatham) about Sarah presenting in the fall at one of their faculty
 meetings. All were very positive that this would happen. We also are potentially looking at doing presentations in the surrounding schools districts of Madison, Summit, Westfield, Morristown, etc.

UCLA study on Asperger’s and focus — Intuniv

It’s been awhile since I wrote here. I’ve been in a state of confusion and a bit vulnerable, but now I’m ready to spill my guts!

As I mentioned in my last post, I wasn’t ready to put Stink on any kind of meds. It just didn’t feel right. He’s not complaining about his tics. His doctor doesn’t see any reason to use meds, so why bother? (Other than they sometimes can be frustrating for me. Not a good enough reason.)

After our last visit to UCLA, however, the idea of possible Asperger’s came up. Combined with many visits with teachers over the past few years, I decided to look into it more via a UCLA diagnostic study. Shock of all shock, Stink fits the description for being on the spectrum and is a candidate for their drug study — one that uses Intuniv (ADD medication) and sees if it helps with symptoms of Asperger’s.

I found this disconcerting for a few reasons: Continue reading

Tourette Syndrome Awareness Week: Graduate students get a dose of the reality of TS

TracyL talked about the following with first- and  second-year graduate students at Rutgers University’s Graduate School of Applied and Professional Psychology as part of the New Jersey Center for Tourette Syndrome’s first annual Tourette Syndrome Awareness Week.

I have an 11-year-old son with TS and a 9-year-old daughter who does not have it. With my son, Ethan, we had him evaluated when we started noticing language delays at 3 years old. He also would drop to his knees, then get back up and retrace his steps while walking as a toddler, and also was volatile and challenging. Those were really our only complaints early on.

But it persisted for a few years. Still, Ethan qualified for Early Intervention, made progress for a few years and was put in a regular kindergarten class. But the falling-to-his-knees tic eventually became more aggressive and started to involved jumping. It was at this time that he was first diagnosed with OCD and anxiety.

Since that time, Ethan’s tics have evolved. There’s a lot of eye blinking, shoulder shrugging and shaking of his hands, as well as spitting, which luckily has come and gone. He also has coprolalia and, as much as I hate to say it, he has become quite creative with his curses.

Still, despite all that, Ethan initially did a good job of keeping everything in at school — until a few years ago, when it got worse and he finally got the diagnosis of TS with OCD and auditory processing disorder (APD). Continue reading

Kudos to NJCTS advocacy efforts

Thanks so much to the NJCTS community for the invitation to guest blog. As I mentioned on my Tumblr page last week, I was very impressed by your organization’s advocacy efforts around H.R. 3760.

The press release praising Congressman Rush Holt for signing on as a co-sponsor showed up in my inbox via “Google Alerts” because of the mention of POPVOX (the company I co-founded with Rachna Choudhry to help bring the “Voice of the People” to Congress.) When I clicked through to read the full release, I was blown away.

The press release was not particularly novel — no screaming headlines or inflammatory language. In fact, it was the simplicity and respectful tone that caught my eye. The advocacy effort it described was, to me as a former Congressional staffer, a shining example of genuine grassroots advocacy and an excellent model for others to learn from. These were my takeaways: Continue reading

Rage attacks can be a challenge

“Get me nice parents now! I’ve had enough of you two! Play a game with me or leave the house! Go die in a hole! I don’t want you to live here anymore!”

My crime that unleashed this tirade from my 13-year-old? Checking his social studies teacher’s website, finding out he had a large amount of work due last Friday and insisting he do it over the weekend.

What sealed my fate as a terrible mom was refusing to play a particular game with him after he spent half an hour working on the assignment. There was more he said, but I can’t include it all without the risk of having this post censored.

Rage attacks are beyond the “go away” response typical of kids going through puberty. Dylan screamed at me for I don’t know how long, threatened to “beat me up,” and tore my magazine out of my hands and threw it to the floor.  My response was to remain as calm as possible, refrain from raising my own voice, not give in to his demands, and wait for the storm to subside.

I have to wonder: Are these screaming fits really Dylan, a result of TS-plus combined with puberty? Or is it a side effect of the medication? When will they subside? My husband and I never give him what he’s demanding when he yells and insults us, so he can’t have learned that’s how to get his way. We in fact remind Dylan that screaming does not get the results he wants, but when he’s in a rage his ability to think logically disappears entirely.

That Sunday he eventually calmed down, and by the end of the afternoon completed the social studies assignment. He even apologized for yelling at me. I never did play the game he was demanding, although I did play another game with him after dinner.

Does your son or daughter experience rage? What provokes it? Is there any response from you that calms your child? Or does it just need to run its course? In Dylan’s case, I think the rages have at least gotten less frequent, but last Sunday’s was especially intense.

Have you seen what the teens are up to?!

Chances are, if you’re reading this, you have a child or teenager with Tourette Syndrome. But did you know that there is a blog just for teens for TS? There is! It’s called Teens4TS, and right now, we have teenagers from all over the world discussing their lives with Tourette on it!

Exciting things are happening over at TS, from a video log (or “vlog” chain) that originated on Facebook, to the “Great Wall of Tics” that also can be found here on this blog, to National Youth Ambassadors taking their Tourette stories all the way to Washington to help spread advocacy for the disorder that affects as many as 1 in 100 kids.

We at TSParentsOnline encourage you to check out what the teens at Teens4TS are doing, as well as encourage your teen — if you have one or know one — to jump online and join the community there either as a reader or blogger. They won’t regret it. They might even learn something new about themselves and the wonderful lives which they lead.

So head on over to Teens4TS today and spread the word. That’s what advocacy for TS is all about!

THE GREAT WALL OF TICS — Share your tics with the world!

Just days before this blog was launched, the Tourette Syndrome Foundation of Canada started a website called The Great Wall of Tics — a place for anyone to post about the tics that have resulted from their Tourette Syndrome.

We have received permission to take that idea and start it here on the TSParentsOnline blog. So please, comment away about your tics or the tics of your son or daughter. You can write about all of those tics in one comment, or dedicate one comment for each tic! Whatever you’d like to do is fine with us!

We just want to hear from you so the whole world can learn more about tics and the people who have them. This is YOUR blog and YOUR chance for 15 minutes (or more!) of fame. Why not seize it today and share your tics? The clock is … ticcing!

If you would prefer to post them on our Facebook or Twitter pages, you may do that as well. Or, you can write to us about your tics at parents@njcts.org. Once we receive enough tics, we are going to try and take our “Great Wall of Tics” and make it as public as possible! The more people that know, the more TS will be able to be better understood.

Pediatric residents learn more about Tourette Syndrome from teens

Drew Friedrich and Sarah Ethridge had a lot to say at the New Jersey Center for Tourette Syndrome’s patient-centered training April 9 at Goryeb Children’s Hospital in Morristown, N.J. And the pediatric residents to whom they spoke absorbed every word they spoke.

The packed room of pediatric residents learned more about Tourette Syndrome in 1 hour than they did during their entire time in medical school or during on-the-job experience. NJCTS’ patient-centered trainings are, simply put, THAT effective. But don’t take our word for it. Listen to what the chief pediatric resident had to say:

“I didn’t realize that you could actually suppress the impulses of the tics. That was interesting information for me,” said Angela Mukherjee, the chief pediatric resident at Goryeb. “I think we got a really good insight into how Tourette affects children on a daily basis and the struggles that they encounter. In the textbook, we learned what Tourette is and how to treat it, but it’s different in person. It was great. It was really educational.”

NJCTS’ story about the training can be read by clicking here, but we at TSParentsOnline would like to provide you with some exclusive behind-the-scenes quotes and information — straight from the parents, Donna Friedrich and Carol Ethridge, who were at the training with their kids! Continue reading

Letters to Congress about Tourette Syndrome bill ARE read

Hi everyone, I just wanted to share a little note that shows how important it is to support H.R. 3760, the Collaborative Academic Research Efforts for Tourette Syndrome Act of 2011. I posted the following short letter to the POPVOX website on March 27:

Dear Rep. Christopher Smith:

I support H.R. 3760: Collaborative Academic Research Efforts for Tourette Syndrome Act of 2011 because my 11-year-old son was diagnosed with T.S. and some of its co-morbid disorders when he was quite young. We want him to have every chance at a normal life, and he is oh so far from that now.

TracyL
New Jersey’s 4th district

The very next day, the following message appeared underneath it on POPVOX:

This letter was delivered to Rep. Christopher Smith [R, NJ-4] on 03/28/12.

See? Your letters to Congress ARE heard, and our representatives ARE interested in hearing what we have to say about Tourette Syndrome. The more letters we send in, the more likely they are to co-sponsor this bill and get it sent into the House of Representatives for a vote. Log on to POPVOX today and share your opinion!

Daily Tourette Syndrome Links: Wednesday, April 4

Here are the past few days’ Tourette Syndrome-related links from websites all over the Internet. This is just another way TSParentsOnline hopes to help the parents of the TS community. Also, we are looking for more parent contributions. We would love to hear from you! Thanks!

Chatham teen selected as 2012 National Youth Ambassador

Tolerance is key in upcoming Tourette Syndrome lecture

Support between brothers, teen raises Tourette awareness

Study: Altered monocyte activation markers in TS

New book out about living with Tourette Syndrome

“I Can’t Stop” — a children’s book about Tourette

Understanding and treating TS

Top 10 important facts about Tourette Syndrome

Best-selling book features unlikely teen hero with Tourette

Stars gather to spread anti-bullying message at schools

NJCTS webinar, April 11: Managing TS in the classroom

First statewide Tourette Syndrome Awareness Day will not be just another walk in the park