Tuesday, May 22, 2012

Advice for those who have children who have yet to be diagnosed with Tourette's

Today I got a message from a woman who needed some advice about TS and her son's situation. I thought I would post it on my blog because I know so many people can have similar concerns or can be in similar situations. Here is the question and also my response. I hope this can help all those dealing with a child who is yet to be diagnosed with TS but who knows diagnosis is soon to come.


Hi, My son is just in the process of being diagnosed. We know he has it. He is 7 and has been having tics since he was 4. He also appears to have OCD and some sensory issues.

His pediatrician has told us that we'll watch things for now, and if the tics worsen, we'll see a psych re: treatment. I simply didn't think to ask at the time - what do I do until then? How do I reassure my son? Do I just ignore the tics and accept him as is, encourage him to suppress things???

Also, my biggest concern is school for next year. I am thinking of approaching the principal to discuss the most appropriate teacher to reduce my son's stress. Your thoughts would be very appreciated! Thank you!

My Answer:

Hi! Sorry that you are having to go through a difficult time with your son. I know how hard TS, OCD, and sensory issues can be as I have them all as well as Dysgraphia, Anxiety disorder, and a math calculation disorder.

I would actually recommend not to wait and watch things for now. If he has had both motor and vocal tics since he was four it's very likely that he has TS. I was forced to wait until high school for a diagnosis and it was miserable to wait. For most kids with tics like your son's, a diagnosis is inevitable and the longer you wait the worse the situation can get in my opinion. Early diagnosis leads to increased self-awareness of tics (which can lead to an improvement of tics later on as apposed to a worsening of tics in many cases), increased self-esteem, and most importantly increased knowledge of the disorder for both your son and those around your son like teachers, classmates, siblings, friends, and family.

Also I recommend to see a pediatric neurologist who specializes in movement disorders instead of a psych if possible. TS is a neurological disorder not a psychiatric disorder and many kids who see the wrong kind of professional can get misdiagnosed with something else when they really have TS.

Until you see a specialist (which you should do as soon as you can), encourage your son to just be himself! Let him know that its okay if he has to tic and let him know that you accept him for who he is! Do not encourage him to suppress. That is the absolute worst thing you can do. When a kid with TS is told to stop tics it only can make them worse both short term and long term. You have to let the tics run their course because truthfully no matter what you say they are going to run their course anyway. Ignoring the tics in the moment is the best policy and talking to him at a time when he is relaxed to let him know you accept and love him no matter what tics he has or how much he tics is best.

As far as school goes for next year, EDUCATE, EDUCATE, EDUCATE! Do approach your son's teachers/principal to let them know about his situation. If it becomes necessary, it can also be helpful to educate his class depending on how noticeable his tics are to those around him. The worst thing for a kid with TS is to be punished or singled out for something they cannot control and the best way to avoid this is to educate those around him, espeically those in his school. Also talk to the teachers about maybe providing him accommodations that would help with his stress level. It has been very helpful for me to have extended time on assessments and the accommodation to leave a space to go calm down and de-stress if my tics, anxiety, or OCD is bad. Sometimes I don't even use the accommodations, but just knowing they are there for me to use if I need them helps to decrease my stress level a lot.

Hope this has helped! Let me know how things turn out and let me know if you have any more questions or concerns.

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