I have a son with Tourette Syndrome and Obsessive Compulsive Disorder. I want to share what I have learned over the years and perhaps learn something new from other parents. My son was diagnosed around age 7, and he will be turning 12 soon.
We have learned a lot over the years and have had the good fortune of finding wonderful doctors and therapists. I am tremendously grateful to them for the strides my son has made over the years.
Like those with TS know very well, there is a constant waxing and waning of symptoms. My son started middle school in September, and to my surprise the transition went better than I expected. My son is a very hard worker with a lot of determination and that certainly has a lot to do with it.
Over the years, I have been very disappointed with the lack of support groups for children with TS & OCD. Although there are many options for the parents, I have yet to find something where kids could meet twice per month to talk about what it is like living with Tourette.
I feel this is so important and so desperately needed. There is nothing like being able to talk to someone who truly understands what you feel and what you go through on a daily basis. My son is social and does have some very nice friends who seem to accept him for who he is, but I would love to meet another family with a 12-year-old boy in the State of New Jersey.
I think it would help my son feel that he is not alone and hopefully will help another child, too! We will be at NJ Walks For TS at Ramapo College on April 14. I am hoping we meet some people and maybe can exchange e-mails.
The following entry is from RuthieP, who posts regularly on the Teens4TS blog:
So I’m going to be starting a Big/Little program for kids (elementary-school aged), teens (middle school or high school-aged) and college students with Tourette Syndrome. For those of you who don’t know what a Big/Little program is, it’s pretty simple.
A younger kid or middle school student (the Little) gets paired up with a student in college or high school (the Big, who will most of the time be someone from their area), and the Big serves as a kind of big sister or big brother point person for the little to specifically be connected to on a one-to-one basis.
The little can ask their big for advice or contact them about things that they might not be comfortable posting about in a large group or just talk to them about things that you would want one person’s perspective on who you come to trust and know as a “big sister/brother.”
The Big/Little relationship is a special and sometimes lifelong bond, so I would encourage you to sign up to be part of this program! If you are a college student or high school student who wants to take on a little or a high school student or elementary/middle school student who wants to be placed with a Big, simply comment on this post or message me on my A Little Bit Different page on Facebook saying so.
This is the continuation from my post yesterday. Read that one first, if you haven’t yet!
My son had complex tics when he was diagnosed with Tourette Syndrome, but those tics subsided once life stresses were reduced and we were on the right path. We were running away from tics with a trial and error of two pages of medication because we were told by my son’s Child Psychiatrist that it was the meds, while never suggesting it could be TS. Once we knew better, after consulting with a Child Neurologist, everything started falling into place, and his tics subsided. My son’s meds have been handled under the same Neurologist which simplifies our lives.
We are more fortunate than others because my son’s tics are mild in comparison to others, which often makes for a great conversation after they have been around my son long enough. They are surprised when I share the facts and they are intrigued enough to ask questions. Like many, they presumed Tourettes was just complex tics. Though I appreciate TS Awareness, I feel that only showing the severe cases of tics has made it more difficult when it comes to people really believing that my son has TS.
My advice to other parents is to never to accept the opinions of professionals as fact or what is best for your child while ignoring your expertise on your child. Ask questions and question what does not sound right. No one knows your child better than you.
Getting professional help is essential, but a one-sided approach is not realistic or beneficial when it comes to TS. Ignore those who make judgements, and don’t feel guilty if you choose medication because it is not a decision made lightly. Continue reading →
It’s a new year, which means it’s time to make some changes. For some people, it’s to lose 10 pounds. For others, it’s to get a great job. I’m no mind reader, but I’m guessing that for many of you it’s to “Stop those Tics!”
I wish there was some magic elixir out there I could recommend, but in my six years at this, there simply isn’t. Everyone’s child is different with a unique personality and temperament. As parents, we must be our child’s best advocate.
While I will absolutely spend time in January discussing vitamins and techniques that have worked for Stink, what I feel compelled to remind you today is that Tourette is not a sprint. It is a marathon. This means that, like with any physical sport, you need to stretch and prepare. Here are some things to help you with that: Continue reading →
Greetings from Los Angeles. As of today, tics for Stink remain at a minimum. (Knock on fake wood desk.) I need to make a few gluten-free sandwiches with natural strawberry jelly and carrot sticks (can you feel my son’s excitement?) so I’ll keep this short:
Is this blog enough? Assuming I continue to write a couple of times per week, I really want to know: Why do you come here or to my Happily Ticked Off site?
Tips on diet?
I ask because I’m considering doing another site – a kind of “upgrade” support-group type site. Continue reading →