As I type this post, my son is doing a light warble about every 30 seconds as he speaks. His playmate, a blond neurotypical easygoing girl, is not bothered in the least. I, on the other hand, am annoyed beyond reason.
“We have to save the world! Ah ah ah… Let’s use this stick and go for it!” Stink sings, before shooting out the back door Video Game style.
I know I should be happy that my son does not have a more severe case. I should be thrilled he is socially accepted, he likes himself and we have no end to the gaggle of kids in and out of our house. And yet, the nonending machine-gun consistency of this dopamine-firing induced tic has me unglued.
I get short with the kids. (My next post will be my confessional post. Be kind.) I have two reasons in particular to feel the sting of this tic: Continue reading
Since it was introduced by U.S. Congressman Albio Sires (D-NJ13) on Dec. 20, 2011, bill H.R. 3760 — the Collaborative Academic Research Efforts for Tourette Syndrome Act of 2011 — has gained a lot of national attention.
It now has 36 co-sponsors, is pending review by a Congressional subcommittee and is being voted on and debated by people from all over the nation on multiple legislative websites, including POPVOX.
On POPVOX, which bridges the gap between the input the public wants to provide and the information members of Congress want and need to receive, H.R. 3760 has garnered overwhelming support — 83 percent of those who have weighed in about it have said, “YES! We want and need this legislation.”
We want to let you know what people nationally have been saying about the bill and why it is so important, as well as encourage you to support it and spread the word! Please enjoy these testimonials and then head to POPVOX to voice your opinion and make this YOUR legislation! Continue reading
I made all her baby food myself. I scoured every market, grocery store, health food store and bodega in our corner of New York City to find organic kale, organic sweet potatoes and organic beets. Spinach, broccoli, berries and apples were a little easier to come by, but I still had to visit several stores to get them all.
I would carve out hours out of my schedule to carefully roast, broil, sauté and steam all the vegetables and fruit, then cool them, pour them all into the blender in small batches, adding filtered water until at the right consistency, then strain those that needed straining, pour the warm food into ice cube trays, cover and freeze.
I would transfer the single-serving-sized cubed into freezer bags labeled with contents and date, and move on to the next item to add to the stockpile.
I bought only organic milk. I only let her have Veggie Booty as a “junky” snack. The occasional cupcake was a nonissue since she’d happily snack on her little bowl of organic broccoli before and after the treat. Continue reading
As a father of two children with TS, I am reaching out to other parents of children with TS to help support a first-of-its kind legislation that would amend the Public Health Service Act to provide for the expansion, intensification and coordination of the programs and activities of the National Institutes of Health (NIH) with respect to Tourette Syndrome.
A copy of this bill, introduced in late 2011 by U.S. Congressman Albio Sires (D-NJ13), can be obtained by clicking here. This legislation seeks to establish regional centers of excellence across the country to conduct research into the cause, diagnosis, early detection, prevention, control and treatment of Tourette Syndrome and associated disorders.
As of today, 36 Congressmen have co-sponsored this bill. I am asking you to help increase its support by reaching out to your member of Congress, and asking your friends and family here in New Jersey and around the country to do the same. Let’s get the word out and pass this legislation!
A simple and quick way to make your voice heard is to use the POPVOX system, which automatically allows you to write to your member of Congress in support of this bill. Here are the steps to take: Continue reading
Hello, this is my first experience as a blogger. I’m not sure what to expect from this, but I am hoping to gain outsiders’ information on the matter of Tourette Syndrome. My son is 7 years old and recently was diagnosed with this disorder.
He is adopted, and from the very beginning I noticed something just not “right.” We had a closed adoption, so his medical history is limited. He struggled with speech and sensory integration, and we chose to send him to a specialized preschool for early intervention.
As is the case with many other families, he has dealt with a darker side vs. the “typical child.” He deals with high anxiety, OCD traits, anger outbursts and all types of behavioral issues on top of his tics.
We noticed at a very early age — around 3 years old — that he would change a certain behavior almost monthly, which appeared to be triggered by anxiety. He would either sniff his fingers constantly, eye blink repeatedly, make a grunting noise or a sound repeatedly.
Now, unfortunately, he has learned some new-found language too soon for his age from friends up the street. His preferred morning ritual is to verbalize vulgar words to his family members for no reason — very frustrating as a parent. His doctor shared that consequencing him may only increase the behaviors.
Wow … what to do?! We are hoping for some inspiring words of encouragement and tools on how to handle our family situation vs. making excuses for what appears at times to be inappropriate choices.
So many times we write when something is going wrong. Then there are those wonderful times when everything goes right! I have tears of joy in my eyes remembering my son’s Bar Mitzvah a few weeks ago.
Words cannot describe how proud I am of Dylan. He got up in front of the congregation, tics and all, led the service and read from the Torah, radiating an immense joy that came from inside. He expressed the feeling of, “I can do this! I’m a Bar Mitzvah” in his smile, his expressions and his words.
In his D’var Torah (speech about the Torah portion) he talked about his parents helping him do things he didn’t want to do, likening it to Moses’ getting help to lead his people out of Egypt, and also said that part of becoming a Bar Mitzvah is that he will need to do more on his own without help.
He does want to do more on his own now, be more independent — even in simple things such as making his own lunch. He tends to make quite a mess while making his lunch. Because of his tics, he’s more likely to spill things, and his motor skills are delayed. But you know what? He can do it. And he can clean up afterward, too.
The stuttering tic made Dylan so frustrated during those months of practicing the prayers and Torah chanting. In the months leading up to the Bar Mitzvah, Dylan’s tics would often increase at the mere mention that it was time to practice Torah. That reflected his nervousness about the upcoming event. During the Bar Mitzvah service itself, did he stutter? Yes. Did it matter? No.
The process of becoming a Bar Mitzvah is ideally a growing-up experience. A 13-year-old is not an adult — far from it — but it’s an age at which children can often first really envision themselves as adults some day and start making purposeful steps to move in the right direction to get them where they want to go. This experience, for my son and our family, was more than I ever dreamed it could be.