Life with Tourette's
Life with Tourette's
It was a bright and sunny day in early November when our family was heading back to Alabama from a five month field trip to California. Don't you just love how homeschoolers can pick up anytime and head out across the country to learn and explore? My family sure does! It was such great fun and my children, then ages 6, 7 and 9, had so many learning opportunities, they could hardly contain themselves! Of course, as parents and teachers, we learned a great deal along the way also. I wish that I could say that it was all learning related to geography and science, but that's not the case at all.
A few weeks before we started our trek back across the states, we noticed that our 7 year old was shrugging his shoulders quite often. Both his dad and I chalked it up to one of those "habits" that children often go through. It was soon that I began to notice that his shoulder shrugging began to involve his arm also. The odd behavior would come and go. Up until we actually started our trip back, there wasn't much thought of it. By the time we had reached the Grand Canyon from San Jose, California, our dear boy was in one big jerk! He was shrugging his shoulders, rolling his arms, rolling his eyes, opening his mouth in really odd ways, and was beginning to roll up on his toes while walking. Yes, that sounds really strange! If you know anyone with Tourette's, you know what I'm talking about. If you don't, you would just have to see it to understand. Now, as a nurse, you would think that I might have the knowledge base to already know what was going on with my son. In all actuality, people in the medical field tend to think the worse before being rational in these cases. After all, this was MY son! Although it seemed fully evident that it was a neurological issue, there were lots of "neurological" disorders that are far worse than TS and sometimes fatal. His dad and I were scared to death! Needless to say, we didn't spend too much time exploring the Grand Canyon. We headed back as fast as safety would allow so that we could get our son to his pediatrician.
Once we were home, our son seemed to settle down and the tics were not quite as severe. That was a good thing because it was a couple of weeks before we could get in to see his doctor. The doctor quickly dismissed his tics to his age and sex. "Boys often have transient tics at this age and it's nothing to worry about" was the doctor's response and diagnosis. Being the mom that I am and having been a nurse for more than 15 years, I wasn't quite convinced! So, I began searching and researching until I came up with my own diagnosis. (You'd just have to know a few nurses!) I knew it had to be Tourette's Syndrome.
Tourette's syndrome, or TS, is a neurological disorder thought to be genetically transmitted. TS is one of several neurological disorders than can be associated with tics. Motor tics are involuntary movements and vocal tics are involuntary sounds. A person with TS will have both motor and vocal tics, although they may not be present at the same time. TS was once thought to be rare and has often been undiagnosed or misdiagnosed. Recently, there is growing evidence that Tourette's is much more common than originally thought. It is more prevalent in boys than in girls and some studies have suggested that it is indicative of varying degrees of learning disabilities. To me, that's questionable, but who can argue with "studies"?
My sweet boy turned 9 in January and after many long months of watching, waiting, and comforting, we saw a pediatric neurologist and my suspected diagnosis was confirmed. In order to confirm TS, tics have to occur intermittently for a period of at least one year. The sad part is that not a lot of research has been done until recently, so there is no cure for TS. There is medication, but nothing that will completely relieve all tics in most cases and the side effects are, (in my opinion) as bad or worse than the tics. So, we have lived and learned! We believe that God's plans are perfect, therefore, we trust.
What about school? Now there's a question! There are many factors that can cause tics to be worse and school is no exception whether it's public school or home school. I do feel that home school causes much less stress than the case of public school for obvious reasons.
It is important to accept a child with TS unconditionally. That may sound odd, but in the initial stages of a TS diagnosis, many parents find themselves running to and fro trying to find the cure for tics, and I was no exception. What I found was that the more we "tried" different things, the more stress we caused and therefore the tics were actually worse. Don't get me wrong! Give up? Never! I'm always on the look-out for new developments. For the time being, we take one day at a time and use whatever comfort measures are needed.
With the waxing and waning of the tics, some school days are quite easy to get through and others are quite difficult. Again, adjustments are necessary. On the days my son has difficulty writing, he usually does quite well with keyboarding. There are days we whiz right through and days that are better divided into more "do-able" chunks.
The very best thing you can do for a child with Tourette's is to take the time to really know him or her. In doing this, you can anticipate your child's needs and make adjustments accordingly. They may toggle back and forth with particular needs related to school and education. It may be hands-on one day and an online program the next. Whatever the case, a child can learn through different methods and may need those methods changed quite often. And that's okay! I'm not an expert by any stretch of the imagination, but I dare say that the learning ability of a child with TS does not have to be disabled. It just takes a little tender, loving care!
Disclaimer: This is not intended in any way for medical advice. For more information on Tourette's Syndrome, please visit the National Tourette's Syndrome Association (TSA) or see your doctor.