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Thread: How Young Nick Battles Tourette

  1. #1
    Join Date
    Apr 2005
    Ottawa, Canada

    Default How Young Nick Battles Tourette

    CEDAR FALLS, Iowa --- Nick Huffman doesn't do well with change.

    Every night before bed he double checks that the doors are locked and his bedroom door is closed. At school, he needs things to be the same everyday. The same teacher, the same students, the same routine.

    The elementary school third-grader was diagnosed with a moderate case of Tourette Syndrome when he was 2. It most commonly manifests itself in involuntary verbal and physical tics.

    In Nick, it can result in hand slapping, eye blinking, flapping his ears, slapping his back or sticking his tongue out.

    Other common symptoms include vocal tics, such as throat clearing sniffing and tongue clicking, though Huffman doesn't exhibit these. The symptom most commonly associated with the disorder is saying or yelling obscenities. But this tic is uncommon --- less than 15 percent of people exhibit the symptom, according to the Tourette Syndrome Association, a national advocacy group. Tourette Syndrome itself is rare; the federal government estimates about 200,000 people in the U.S. have been diagnosed with the disease.

    Children with the disorder will sometimes also be diagnosed with obsessive compulsive disorder and anxiety disorder, which is the case with Huffman.

    Too much change, or sometimes loud noises, leads to stress, which makes the tics worse and can lead to "meltdowns" in Huffman, the name he gives his most severe tic outbursts.

    The last "meltdown" came this winter, when his regular teacher was on maternity leave. Having a substitute teacher isn't a big deal for most kids, but for Huffman, it can ruin his whole day. Or in this case, a couple of months. Add the fact that he was off his medications because he was switching to a different drug, and that's two big strikes against a child with Tourette Syndrome.

    So it wasn't surprising to his mother, Libby Huffman, when one morning he rolled on the ground in the middle of class and repeated the phrase "out of control."

    "(There is) tons and tons and tons of stress and stuff. And just tons of tics going on at once, where I might roll on the ground and do this (he hits his hands on the ground) and start yelling out of control. I can't stop it." Nick Huffman said of his "meltdowns."

    Unsure of how to handle the situation, the school sent Nick to the principal's office for the rest of the day.

    Libby Huffman said disciplining a child with Tourette Syndrome for acting-out tics is inappropriate because the tics are involuntary --- it's akin to scolding a child for blinking. However, she said it's an easy mistake for the uninformed to make. Before she knew Nick had the disorder she used to discipline him for actions that were out of his control.

    The school principal, said the school is always finding new ways to approach a child with Tourette Syndrome. For instance, his teacher, is adept at seeing when Nick's stress level is rising and giving him the space he needs to calm down. She also took the time to explain Nick's condition to the class in September. Those are two major recommendations the Tourette Syndrome Association makes to educators, and it has helped Nick enjoy and excel in school.

    "(Sandvold) can visually see when he's getting more stressed out and he literally takes a walk around the building. Nick does a nice job of that, he's very responsible with it," he said.

    Libby Huffman takes the lack of knowledge about the syndrome in stride. When she first noticed something was wrong with Nick at a young age, doctors kept telling her it was something he'd outgrow. It took the persistence of a mother protecting her child and a trip to the Mayo Clinic in Rochester, Minn., to get him diagnosed.

    The federal National Institute of Neurological Disorders and Stroke said it is not uncommon for people to be diagnosed only after symptoms have been present for a long time. That's because for doctors and families unfamiliar with the syndrome, it can be easy to confuse mild or moderate tics as unimportant, temporary or the result of another problem.

    "I find a lot of times going to the doctor, I'm the expert in Tourette Syndrome. A lot of times (doctors) remember learning about it in medical school, but they don't deal with it often," she said.

    Libby Huffman acknowledged that parenting a child with Tourette Syndrome can be exhausting and exasperating at times, but said, "I wouldn't trade it for the world. If he didn't have Tourette Syndrome, if he was like most kids, I couldn't love him anymore anyway," she said.


  2. #2

    Default How Young Nick Battles Tourette

    The school principal, said the school is always finding new ways to approach a child with Tourette Syndrome.
    I think having the support of the school has a positive effect on the child.

    Instead of battling the school to make some allowances for a child with a medical problem, having the support of the school gives a family a sense of partnering together to give a child with TS the best education possible.

  3. #3

    Default Nick Huffman doesn't do well with change

    Hi, My name is Libby, I'm the mother of the child this article is about. I camr across this web site quite by accedent and found the article about my son here. I am curious as to how it was put on this web site and woul love to talk with anyone interestid in my sons story/

  4. #4

    Default Nick Huffman doesn't do well with change

    would also like to comment about the principle. i did not feel he was very supportive. He made himself apear this way in the newspaper but he caused a lot of pain in our family during the school year with our son. I'm hoping and praying for a better school year for my son next year.

  5. #5

    Default How Young Nick Battles Tourette

    Hi Libby33,

    Welcome to the TSFC forum, we are happy to meet you.

    I would love to hear your son's story! When was your son diagnosed? How has your family coped?

    I am sorry that the principle didn't accurately portray his reactions to TS and hopefully it shammed him into acting better for your son next year.

    We have articles talking about TS and one is called the Nine Faces of a TS Parent and they are really interesting.

    We have many discussions on various tics thoughout the body that you could jump into or start a new discussion. Let us know how we can help your family.

  6. #6

    Default Nick battles tourette syndrome

    Hi, let me first say there were some mistakes in the article. My son was diagnosed at age 7 and he was diagnosed at the University of Iowa hospitals and clinics in Iowa City, Iowa not Mayo clinic in Rochester. He had an episode in class where he repeated the phrase "outta controle" over and over. The school nurse shamed him, took him to the principles office at 10:00 in the morning and Nick stayed there for the remainder of the day. The principle than told Nick "there are some things you can controle and some things you can not" he made Nick write down what he did and why it was wrong. they argued with me and still feel I am in the wrong. I have provided them with much lititure and videos but i get the feeling they do not want to do the work of "dealing" with a child like Nick. I am having a hard time getting the school to give my son an IEP. He is on a 504 plan right now but it's not all that great. I got pro active and got in touch with The National Tourette Syndrome Association in New York and they are now travelilng here to do a parent work shop july 31st and a conference for teachers, medical students and professionals on August 1st. I'm very excited about this and I have encouraged the sataff at my sons school to attend. I hope they will. I'm still curious to know how my sons article got to this web site? I have never been to this site before and came accross it totaly by accident. I thought it was really cool to find it here. I know the word is getting out and promotin awareness is exactly what I want. We here so many things about autisuma nd other disabilities but we never hear about TS and if ya do it's always some off the wall misconception of people yellilng and swearing. I know there are touretters that do this but my understanding is it's less than 10%. I'm very scared and nervouse for next school year and the kind of teacher my son will get. I really want my son to enjoy school so I'm praying for a good year this fall. If you have any idea how my article made it to this web site please let me know, I think its great!

  7. #7
    Join Date
    Jun 2005
    St. John's NL

    Default How Young Nick Battles Tourette

    Hi Libby

    If you have any idea how my article made it to this web site please let me know, I think its great!
    One of the roles of the moderators on this forum is to continue to seed topics for discussion. We achieve this through checking daily for news or publications that are available on-line to share with our members. Steve located your story and copied it for our members to read. We do this quite often but this is the first time we actually had someone from one of the articles we've located find us. I am so glad you did.

    Libby are you affiliated with the Tourette Syndrome Association in your area? I was wondering if they have offered support to how to deal with the school.
    Janet, mom of 4

    TSFC Homepage

    "Intelligence is always increasing; accommodation allows your intelligence to do what it has always done." Cassie Green, Washington College

  8. #8

    Default TSA

    Unfortunatly we do not have a TSA chapter in Iowa. And no i have not had help from anyone. I just spent 450.00 at the university of Iowa hospitals and clinics for Nick to see an educational consultant. They did testing and are finding ways to help me get the things I've been fighting for since Nick was in 2nd grade now going into 4th.

  9. #9

    Default How Young Nick Battles Tourette

    Hi Libby,

    Nick was in 2nd grade now going into 4th.
    My son is going into the 4th grade and he does find major changes hard. What I found helps him is talking about what is bothering him over and over again to the point where he says Mom not that again.

    having a hard time getting the school to give my son an IEP
    Could you try going to the school board? Also, I would definitely go back to that school nurse with the TS information and tell her that this is the medical information that your son is diagnosed with and she should help you.

    Let us know how we can help.

  10. #10

    Default Great article

    Steve, thank you so much for finding, and posting, that article. I have printed it out, and will be keeping a copy to show to my son's principal in September. I don't know if "the powers that be" in the school will really understand, but between this article and the in-servicing I am hoping to arrange, this should be helpful!

    Libby, welcome to the site! It must have been very strange to find an article in a website you'd never been to before! I have not yet had a confirmed dx of tourettes, but we should have some answers by the end of the summer.

    I am looking forward to getting to know you.

    Be well,

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