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

Posted on April 30, 2012 by CaroleE

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

Posted on April 26, 2012 by AndreaF

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

Posted on April 25, 2012 by TracyL

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

Posted on April 24, 2012 by MarciP

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

Posted on April 23, 2012 by JuliaG

“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.