On another note, my son had a major meltdown at school yesterday. Corey is being placed on home-based schooling until I can get the stuff I need to homeschool him myself. School is not a safe place for him right now. I knew it would come to this eventually, but I wanted to have everything set up to just pull him out. Feeling really lost right now.
I want to cry, but not in front of him. He won’t talk about it and I don’t know how. I just can’t picture him screaming and cussing at his teachers and throwing stuff around. Not this little boy who is hiding under a blanket on the couch because he thinks he’s in trouble. I just don’t get it.
Neurological storms, rage episodes, rage attacks, explosive rage — it has many names. Regardless of the term, they describe the same phenomenon: a person feels unable to control their anger, they explode, they have an outburst of anger. The consequences, like the names and labels, are also many:
Damage to property
Many parents of kids with Tourette Syndrome or adults who have TS themselves say that neurological storms are one of the most distressing symptoms of TS+.
A key feature of these outbursts is that they are not usually consistent with the person’s personality.
It is common for parents or teachers to ask, “isn’t this just a temper tantrum?”
Thanks to everyone who has checked in on me. It’s been kind of a crazy couple weeks around here. I was really sick with an exhausting chest cold. Stink had his 10th birthday party. It was my birthday last week. Plus, I’m taking my mom to doctor appointments here and there, doing my volunteer work, trying to exercise and, oh yeah, my book.
I’ve made a final commitment to really push that sucker out. I won’t feel “done” until it’s done.
I suppose it’s taken a while to finish for a few reasons:
I don’t want to go back to that dark place I was in which is often what happens when revisiting old wounds.
I’ve had other things on my plate, like making actual money through little eBay sales here and there.
I have wondered if I’m just being a narcissist writing this book. Is it therapy for me or is it really going to help someone?
All this has been floating through my mind, and sometimes even makes me feel a bit panicked, but I finally had an epiphany, and it goes like this: Continue reading →
I am writing in response to the article, “Medical Bills Bankrupt Families of Mentally Ill Children,” which is a topic poignant to my family at this time. For the past few weeks, I’ve been checking our mailbox every day, making the walk with a nervous lump in my throat, and returning — hands full of junk mail and heart fuller with worry over a bill that should have been here by now.
Our son, who is 12, has been in a residential treatment program 1,200 miles from home for six weeks now, and we await the bill that weighs on us like a 10-ton question mark. He is receiving therapy to treat complex symptoms related to Tourette Syndrome and Obsessive Compulsive Disorder.
To our best estimation, the bills we will have received by the time he is discharged some time this spring will cost us anywhere between $15,000 and $400,000 — a big range, but every bit hinging upon whether our insurance company deems this intensive, residential program “medically necessary.”
The hospital required a deposit of $30,000 at the time of admission that would cover our son’s first 30 days of treatment, and we have received notes from our insurance company informing us they’ve approved his first three days, and then five days of treatment — good news, yet little comfort when our son will likely require a 4-plus-month stay at this facility.
Our life prior to his admission is difficult to describe, except to say that we were at a level of nonfunctioning unfathomable to most. Our son couldn’t tolerate hearing his name and would collapse in pain if he heard it uttered to or in reference to him. Continue reading →
Marc Elliot has spoken to hundreds of groups and organizations, reaching out to more than 100,000 individuals in the United States and internationally. At the age of 26, Marc has now found a way to use his own story, his triumph over handicaps, as a way of helping individuals around the world find their own path to tolerance for themselves and others. Marc is the author of the book “What Makes You Tic?”
Recently, Stefanie from The Coffee Klatch on BlogTalkRadio spoke with the author and motivational speaker who grew up struggling with Tourette Syndrome.
In 2011, he was named College Speaker Of The Year, teaching high school and college students kindness, tolerance and respect toward others. Marc talked about what it was like for him to grow up as a child who always stood out, never quite fit in and always said and did the “wrong” thing.
His book “What Makes You Tic?” gives readers an in depth understanding of what it was like for him while growing up. He describes the difficulty of knowing that he was making inappropriate and impulsive comments, yet he knew he was unable to control himself.
Today, Marc is tic-free and an inspirational speaker helping create a culture of people who better understand what it feels like to be “different.”
The New Jersey Center for Tourette Syndrome & Associated Disorders’ (NJCTS) yearly Family Retreat Weekend has been a source of fun, inspiration, learning and encouragement to individuals with TS and their families for nearly a decade. Many memories have been made, and myriad more are sure to be captured in 2013!
NJCTS is proud to announce that “the best weekend of the year” will return to beautiful YMCA Camp Bernie for the 9th annual Family Retreat Weekend on June 7-9. Registration is now open for this exciting event, and NJCTS encourages you to get your family signed up right away by filling out an new easy-to-use online registration form. The registration deadline for this year’s weekend is May 10, and the cabins fill up fast so don’t waste timing signing up!
Scores of New Jersey families flocked to YMCA Camp Bernie for last year’s event, and every single one of them had the time of their lives. Here’s what a few of them had to say: Continue reading →
Being a teenager is hard enough, factor in the early 80s and not much info on the subject of Tourette — and the snarky way the media has depicted TS — and growing up was a huge recipe for disaster.
I had finally made it home, and I was once alone again. I had no friends because my family had moved while I was in the hospital, and I had no school. Nothing was familiar to me anymore. I had lived in a hospital environment and wasn’t use to my own family anymore. I was changing in so many ways as a teen, and I had Touretts. I was a square peg in a round world.
I didn’t fit in anywhere. I had missed 2 1/2 years of school, and technically I should have been going into 7th grade. As soon as the school system heard I had TS, I was automatically branded “special needs” and was under chapter 766, which basically put me in a classroom with children that had severe disabilities.
I fought this. I went head to head several times, challenging the head of the special needs department. I wanted to know how I was “normal” and then not. I was still exactly the same. The only difference was that my body would do its own thing at times, but my mind was fine.
The reason I couldn’t keep up was because I missed 2 1/2 years of school, not because of the Tourette. I went from getting through half of the fourth grade and entirely missing fifth and sixth grade. I am stubborn, so I made them send me to the nearest junior high.
When I was at the day school, instead of just putting me in a mixed class, I wish the school would have looked over my records and had given me age-appropriate work. The mistakes that other people made have hindered me, and I can never change this. Continue reading →
In 2008, the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) launched its monthly Wednesday Webinar series, which draws an audience from 48 states and nearly 20 countries. The series, offered at no cost to participants, features online seminars for parents, educators and professionals on topics of interest to worldwide members of the TS and associated disorders communities.
Its next webinars are on February 27and May 8. The February 27 webinar, titled “Food Choices: How Do They Affect Our Performance?” will be presented by Certified Nutrition Consultant Stephanie Goodman, while the May 8 webinar, titled “Medication Management for Tics and Tourette Syndrome,” will be facilitated by Dr. Mark Mintz.
These webinars are EXCELLENT and are among the best 60 minutes you can spend educating yourself about TS, associated disorders and the myriad things that go along with such diagnoses. But don’t take our word for it. Check out what some people said about NJCTS’ slew of webinars in 2012: Continue reading →