Telling Children about TS
How do I tell my child he/she has tourette syndrome?
There is a reason that your body makes the movements and sounds. I know and understand that you cannot stop them, although there are probably times when you can hold on to them for a while. There is a name for it.
You know your own child, see how things go, how is he taking this? Does he want to know? Is this upsetting him? Ask him if he wants to know more. Don’t tell him any more than he wants to know. Tell him he can always ask another time, and you can chat about it then.
It’s called Tourette Syndrome. It’s something you are born with - you didn’t catch it from anyone else, and you can’t give it to someone else. Some people have brown eyes, other people have blue eyes - we are born that way. With tourette syndrome, it doesn’t show up as soon as you’re born though, and it might be a few years later before it starts.
The brain has a sort of electrical wiring system, but instead of electricity, it uses ‘neurotransmitters’ - chemicals that carry the brain’s messages around the body, telling the body to do things.
In tourette syndrome, it seems the brain is more sensitive to these chemicals, so that the messages are received more often, and they make your body make the movements and sounds a lot more often that it should. Lots of people have TS, about 3 in every 100 children has it.
Doctors call the movements and sounds ‘tics’.
It’s OK to talk about it anytime you want to. I understand that you can’t help doing the tics. Sometimes you might find that you can hold on to them for a while, and do the tics (maybe more of them) later, but that takes hard work and concentration. It’s always OK to tic at home.
If you are doing a tic at school that causes you problems, then just tell your teacher that it’s a tic, and that you can’t stop doing it because you have tourette syndrome.
Someone gave this explanation for telling her child’s friends about TS
The message was posted by Dominique on alt.support.tourette groups.google.com/groups?…1.deja.com
QUOTE
“I’ve used a particular story to explain TS to my nephew and the kids of some friends of mine and it seems to work well…
I talk to them first about the brain, making sure they know what it is and how it’s the boss of the whole body. Then I tell them that because the brain has so much to do, it has messengers that help them. For example, if the brain decides it’s time for the toes to wiggle, it tells a messenger “Hey, go tell the toes to wiggle” (I usually give a couple more examples here too.)
ANYWAY, sometimes people are born with TOO MANY messengers. (I guess I’m sorta thinking of brain chemicals here… like dopamine?) Anyway, after all the messengers have been assigned their job, there’s a bunch left over. They want to help too, but the brain says ‘No, I’ve already got enough helpers. Go sit yourselves in the corner over there and occupy yourselves and stay out of our way.” Well, of course, the extra-messengers soon get bored and angry and decide they’re going to help whether the brain likes it or not. So THEY start telling different parts of the body to do stuff. Now, these parts don’t know there’s extra messengers. They just know that when they’re told to do something, they do it EVEN IF THE OWNER OF THE BODY DOESN’T WANT THAT PART TO DO IT. (At this point, I sorta use that eye-blinking example. I tell the kids to try to not blink as long as possible.) Pretty soon the brain will decide it’s time to blink and send down a messenger. The poor eye will be confused. Here’s (kid’s name) telling me not to blink, but here’s one of the brain’s messengers telling me TO BLINK. (Pretty soon, of course, the kid will have to blink.) “See,” I say. “The messengers ALWAYS win.”
Then I go on to explain some of the other ‘silly things’ those bored extra messengers make me do. By the time I’m done, the kids think it’s actually pretty cool. LOL”
END QUOTE
The NTSA (USA) has the following article on their website
To Tell or Not to Tell?
by Ramona Collins, M.Ed.
When a student has mild to moderate TS symptoms that have essentially gone unnoticed, should we parents inform school personnel about the TS diagnosis? As a teacher myself, how I wish I could say, “Yes, of course!” and trust that my colleagues will always respond as caring and compassionate, knowledgeable professionals. However, there are virtually NO cut and dried answers when it comes to the experiences a child may encounter in school.
Resolving this question is quite similar to answering the question “Should I put my child on medication?” By and large, it’s a judgment call; one that is based on weighing the benefits against the drawbacks. Here are some considerations I hope will help when making your own decision for this school year.
What Does Your Child Want?
Of primary importance is the student’s wishes and feelings about revealing the diagnosis. Although parents must retain the right to make the final decision, asking a child’s feelings on the subject plays a crucial part in helping to develop an acceptance of his or her disorder.
The sooner this interchange begins, the better. Early discussion not only helps parents better gauge their child’s self-esteem level, but also conveys the unspoken message that with this disorder, there is a need to explain and explain and explain again exactly what TS is. Periodically, listening to your child’s viewpoint on this subject is time well-spent, no matter which decision you, as the parent, reach at the time. When it comes to communicating with school personnel (regardless of their wishes at any given time), students will feel reassured when parents accept the responsiblity of making a final decision on their behalf. However, when it comes to communicating with peers, I recommend keeping confidences as he wishes, but gently nudging him toward self-acceptance and the freedom that comes with sharing information about a TS diagnosis with others.
Is Age a Factor?
Once your child’s viewpoint is voiced, consider the following additional factors: Is the child in elementary or secondary school? Though I hesitate to generalize, typically elementary school personnel are more child-oriented, whereas secondary school personnel are more subject-oriented. In addition, elementary teachers are likely to have fewer students, and have more time to work with these students than secondary teachers. Consider how much time teachers will be spending with your child and try to put yourself in their shoes. From the teacher’s vantage point, ask yourself, “How much do I need to know about Tourette Syndrome to help this student succeed?” Secondary school subjects may differ dramatically in course requirements. If disclosure about TS is critical to your child’s succeeding in a particular course, then definitely proceed. However, if it’s not, you may want to let it go.
The Pros of Telling
To examine the potential benefits of broaching the subject of your child’s TS, think about this: With disclosure and a physician’s documentation, followed by continuing education of school personnel and ongoing communication, it should be a fairly simple matter to draw up an I.E.P. or 504 Accommodation Plan. Once this is in place, school personnel are expected to address the child’s particular needs in a face-to-face meeting at least once a year. Also, if you take this route, adequate preliminary documentation will be in place to obtain permission to modify testing procedures for college entrance exams.
The Cons
Many parents worry, sometimes correctly, about the stigma, gossip and prejudice of having a “label” put on their child. They worry about having this label on their child’s “permanent record.” Remember, it is illegal to divulge confidential student information, or to print any such information on an enduring document such as a transcript or a diploma.
Ask Yourself . . .
Ask yourself, “Do the benefits outweigh the drawbacks at this time?” Your response should be dictated by the present situation. Whether they be observable motor and phonic tics or unobservable OCD/ADHD type symptoms, if these symptoms are causing academic or behavioral problems requiring additional educational or emotional support, and you believe your educational setting will indeed provide that support, then by all means solicit the school’s assistance.
Re-weigh the factors often. If your family chooses not to disclose, make sure the child understands (to the degree he can) that you’re not ashamed or embarrassed, but that some people really don’t understand yet what TS is. Don’t forget that this is a decision that he or she will need to make many times throughout life. With this in mind, tell him about the issues that led to your decision to disclose or not to disclose.
The Bottom Line
Ultimately, whether this venture succeeds will come down to the interaction and flexibility of the parents and the individual teacher(s) involved. Remember, many educators may have never seen a case of TS, and very few have had any formal education on the subject. So if you share information about Tourette Syndrome, you should be prepared to provide a list of modifications you’re requesting as a springboard for what will hopefully become an ongoing dialogue between you and the school. It’s Up to You
With your continued support of both school personnel and your child, many of us believe that in the not too distant future we may be able to answer the question, “Should we tell the people at school about our TS diagnosis?” with a confident, “Yes, of course!”
Ramona Fisher-Collins has a masters degree in special education. Residing in Oklahoma, she is a member of TSA’s national Board of Directors and author of our brochure “Discipline and the TS Child.”