Tourette Rochester News
We have just received a notice that VESID has issued guidance on
accessing special education services for parents whose children are
home schooled and has asked for assistance in "spreading the word."
Because there are some time sensitive contingencies, this is
considered ** High Priority **
Guidance is now available on Chapter 217 of the Laws of 2008, which
was signed into law by the Governor on July 7, 2008, relating to
students with disabilities who are in home instruction programs
pursuant to section 100.10 of the Regulations of the Commissioner of
Education (home-schooled students) and are now eligible to receive
special education services from their public school districts. In
order to receive services in the 2008-09 school year, a parent must
submit a written request for such services to the board of education
of the school district of location no later than August 6, 2008 of
this year. This is available at:
http://www.vesid.nysed.gov/specialed/publications/policy/homeinstructed708.htm
MPNnow.com - Rochester,NY,USA
June 6, 2008
Empathy 101: What having a disability is really like
Christopher Hall does a little fishing in the Erie Canal behind his Perinton home May 30. Christopher has Tourette syndrome and as the new youth ambassador of the Greater Rochester Chapter of the national Tourette Syndrome Association, he’s trying to educate the community on understanding the disease and accepting people who have it. Fishing is one of his favorite pastimes.
By Denise M. Champagne, staff writer
It’s sometimes hard for Christopher Hall of Perinton to control his movements.
If he’s upset or excited about something, he may suddenly twitch or grunt and not be able to stop it right away. He can’t help it. He has Tourette syndrome, a neurological disorder characterized by multiple involuntary movements called motor or vocal tics.
Christopher was recently named youth ambassador for the national Tourette Syndrome Association. He is one of about 25 teenagers selected nationwide who received training in April in Alexandria, Va.
“When I was picked to be the ambassador, I didn’t really know what to think,” said the 18-year-old. “I thought I would give it a shot, and before I knew it, I was enjoying it. I was feeling proud about being able to teach people about Tourette syndrome.”
As an ambassador, it’s his mission to visit schools and youth groups, especially during national Tourette Syndrome Awareness Month that ends Sunday, to talk about what it’s like to live with the disorder.
Christopher was nominated by Lena Shiao, chairperson of the Greater Rochester Chapter of the Tourette Syndrome Association, who has watched him mature and gain more confidence in the last few years.
“He has come into his own,” Shiao said. “Tourette syndrome is a difficult disorder to have because it’s a lot of isolation. You don’t make that many friends. I thought it would boost his confidence to learn how to speak to other young people. He’s doing very well.”
Things haven’t been easy for Christopher since his disability was diagnosed when he was in the fourth grade.
“Usually what happens is if I get stressed, anxious or excited about something, my body just starts twitching,” he said. “My eyes will start rolling back in and stuff. At times, I can control it. I can hold it and hold it and hold it, but it’s hard for me to fully stop it on my own. Medication helps, but it doesn’t help it fully.
“Sometimes, the smaller tasks are harder for me, like tying my shoe or brushing my teeth,” he continued. “Sometimes, my hands will be twitching because I don’t have control of them. It made me uncomfortable when I was in school. I would be twitching to the point where I couldn’t think about things. A lot of students tend to make fun of me. They tell me to stop acting weird. They think I’m doing it for attention. A lot of times they don’t realize I can’t stop what I’m doing.”
Now, he’s trying to educate people on what it’s like to live with the disease. He said he gets a lot of questions.
“After I’m done talking with these people, they definitely have a better understanding,” Christopher said. “I don’t expect it to change immediately for everybody, but it’s a good start. It definitely helps me emotionally. It makes me feel better about myself and my past.”
His mother, Judi Hall, events coordinator for the Rochester chapter, sets up his speaking engagements, which so far have included a BOCES conference and a second-grade class in Fairport.
“The purpose is to raise awareness,” she said. “So many people have misinformation about Tourette syndrome. The kids are misdiagnosed and misunderstood as being troublemakers. It’s a lonely life for kids with Tourette syndrome because they aren’t accepted.”
Christopher will be ambassador for a year, and then he’ll train his successors. He also offers hope to others with Tourette syndrome by living as normally as he can. He just graduated from Monroe 1 BOCES, has a girlfriend who lives in Canandaigua, and holds down a part-time job at the County Club Plaza Wegmans in Penfield.
“What I would definitely like to get out of the youth ambassadorship is to make a difference,” Hall said. “I’d like to let people know that just because you’re different, you don’t have to be held back.”
Denise M. Champagne can be reached at (585) 394-0770, Ext. 352, or at