Tag Archives: IEP

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

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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 →

Tourette and its co-morbid conditions: ADHD, OCD, Asperger’s

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Photo taken of my kids at the beach in February. Yes, February. Apparently life exists outside of electronics and it is possible to go screen free and maybe, with any luck, reduce tics. Wish me luck.

In my last post, I talked about my son’s big UCLA Tourette Syndrome follow-up appointment. The doctor took a lot of time with both of us, and the overall consensus was that, yes, Stink has some attention issues. Stink tics mildly to moderately. The doc doesn’t feel Stink needs meds for his tics since he’s not being affected socially or academically.

That all said, meds are not out of the question. We have the option of having Stink tested for free at UCLA for an actual diagnosis of something other than TS — be it ADHD, high-functioning Asperger’s or what-not.

If Stink qualifies for Asperger’s, he can start an eight-week trial through UCLA where they will put him on Intuniv and monitor his blood pressure/reaction on a weekly basis. Of course, this is a blind trial, so Stink might just get a placebo, which means we’re driving in two-hour traffic each way for a sugar pill which is kind of not really on my gluten-free/casein-free/food dye free/eat-everything-that-tastes-like-butt diet.

There’s also the issue of Stink’s blood pressure, which tends to be 85/55. With Intuniv’s side affects being to lower blood pressure, I’m taking a chance that Stink will faint, black out or perhaps just not get up easily in the morning. Continue reading →

A Tourette Syndrome mother’s long journey, part 3

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This is part 3 of a 4-part series from a California mom detailing her struggle to get the right care for her Tourette Syndrome son. You can read part 1 here and part 2 here.

The school district my son is in, apparently like many others, are resistant to  accommodations. I had to push and become less than favorable in order to get more support at school for him.

The staff at Spencer’s school were resistant to any diagnosis because they did not want to deal with him. The reasons why people go into education has been lost with many teachers, who only want to work with those who fit into that “perfect student” mold.

Even though my son had the Tourette’s diagnosis, I still had a lot of resistance when it came to getting my son accommodations he needed. Even though it is mandatory to follow an IEP, it takes the parent staying on top of it to make sure it is being followed. I had a special IEP meeting and was thankful to have Susan Connors speak on my behalf via speaker phone.

The principal actually had the nerve to call Susan beforehand to try to get her to convince me to move Spencer to another school. Susan informed me of this beforehand in a private call. I could not believe the audacity to do this, especially given Susan was advocating for my son! Continue reading →

A Tourette Syndrome mother’s long journey, part 2

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This is part 2 of a 4-part series from a California mom detailing her struggle to get the right care for her Tourette Syndrome son. You can read part 1 here.

When we got a referral to a neurologist, Dr. C., he spent 15 minutes with us and sent us home with some old-school meds that sent Spencer’s tics into overdrive. I called the doctor in urgency and explained Spencer’s tics and then told him, “It is like he has Tourette’s.”

It is then that the doctor replied, “well, yes, he does have Tourette’s.” I was shocked and upset that he never mentioned this to me in his office. He just said it matter-of-fact, even though there was no known diagnosis.

I immediately went online and started researching Tourette’s and took Spencer off of the meds the doctor prescribed. After reading the facts, I was in tears. I was crying because of all the years spent not having an answer. All of those days I kept telling my son, “Stop doing that” because I did not know better.

I felt guilt because with my ignorance I had this dumb idea that he might actually stop if I kept bringing it to his attention. He also got in trouble at school because his teacher thought his tics were just him acting out and being disruptive. I was ignorant about Tourette’s because I was like the general population that presumes that Tourette’s is just complex tics and cursing.

I was relieved to finally have something that fit and not upset like some parents when their child is diagnosed with Tourette’s. After so many years of what we went through, I finally could exhale Continue reading →

A Tourette Syndrome mother’s long journey, part 1

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This is part 1 of a 4-part series from a California mom detailing her struggle to get the right care for her Tourette Syndrome son.

Hello, I  am the mother of a 14-year-old son, Spencer, who has Tourette Syndrome. Unfortunately, we had to take a bumpy road  before this diagnosis. I could write a book on our journey so far, and I still don‘t have it figured out.

It has never been easy, including the beginning that started with the worst case of Hyperemesis, Pitocin, 24 hours of labor and hemorrhaging to get him into the world. Nursing was a challenge, he didn’t sleep much, had some ear infections and was sensitive to loud sounds.

He was otherwise very healthy and always in the 95 percent on the height/weight charts.  He walked at 15 months and was running within the end of that month. He had an advanced vocabulary and figured out how to open up the most advanced cabinet locks by his first birthday.

He had an atypical febrile seizure at 14 months old that was severe enough to have him admitted, but thankfully all the tests came back positive. As a toddler, he was very impulsive when it came to playing with other children and it was not long until we were outcasts in play groups. It is then that I started to feel isolated. Continue reading →