It has been a year now, since my youngest boy, Caleb, was diagnosed with Tourettes Syndrome (TS). So, it seemed fitting to re-cap our first year with TS, including its triumphs and challenges.
About two years ago, we noticed Caleb making a strange motion with his shoulders (what we now know to be a tic). We pretty much ignored it, because toddlers (he was 2 at the time) make strange movements. We didn't really become concerned with it, until other people started noticing his tics. That's when I started paying more attention. He would move his shoulder up and down and raise his hand multiple times in a row. He seemed to do this mostly when he was excited or nervous. I thought it was strange, but just a weird habit. This went on for almost a year, until we started noticing new tics. He would blink his eyes repeatedly and scrunch his face. I would tell him things like...Caleb, are you ok? Caleb, relax. But, he was two and had no clue what I was talking about. It didn't seem to bother him, so I decided a doctor's visit wasn't necessary.
I started pointing out these "movements" to other people, to see what they thought. My husband, Lance, wasn't concerned, because he had seen this before. As a child, he did this too. He took out some old home videos of himself, and we watched them together. Sure enough, Lance was making similar movements to Caleb. We talked to Lance's parents, and they said they took Lance to the doctor for this when he was little. The doctor told them it was just a habit, and he would, eventually, grow out of it. This is when I decided to look into this more. It seemed strange that a son would be doing the exact same thing as his father did as a child.
Many things came to mind during my research, but the one thing that kept sticking was tourettes.
Gilles de la Tourette syndrome (Tourette Syndrome or TS) is a neurological disorder which becomes evident in early childhood or adolescence. The first symptoms usually are involuntary movements (tics) of the face, arms, limbs or trunk. These tics are frequent, repetitive and rapid. The most common first symptom is a facial tic (eye blink, nose twitch, grimace), and is replaced or added to by other tics of the neck, trunk, and limbs. (http://www.tsa-usa.org/Medical/whatists.html)
Caleb was exhibiting all of the early signs of TS. On top of that, TS has been found to be hereditary. This fact sealed the deal for me. It was then, I decided to take him to the doctor.
Our doctor agreed that it could be tics, but we would need to take him to a specialist to be certain. At the specialist, we learned there was no "test" to determine if an individual had TS or not. They base their diagnosis from a few different factors.
- have both multiple motor tics (for example, blinking or shrugging the shoulders) and vocal tics (for example, humming, clearing the throat, or yelling out a word or phrase), although they might not always happen at the same time.
- have had tics for at least a year. The tics can occur many times a day (usually in bouts) nearly every day, or off and on.
- have tics that begin before he or she is 18 years of age.
- have symptoms that are not due to taking medicine or other drugs or due to having another medical condition (for example, seizures, Huntington disease, or postviral encephalitis). (http://www.tsa-usa.org/Medical/whatists.html)
On top of these factors, the specialist observed Caleb's tics, listened to our stories, and took into account Lance's tics. She then confirmed, our belief, that Caleb does, in fact, have Tourettes Syndrome. She gave us the choice to put him on medication, or, if the tics weren't affecting his daily activities, just let it be. We decided to just let it be for now, and, if his TS became worse in the future, we would re-evaluate our decision.
My initial thoughts were of fear. Nobody wants to see their child suffer. I knew, from my research, that tics get worse toward adolescence. So, I knew we were only at the surface of his TS. It hurt my heart to know that he would have to suffer. That he will probably be laughed at. I was also afraid for the unknown. How severe would his tics become? Will this affect his future?
But, through all of this, something amazing was happening. My husband was finally, after many years of suffering, feeling relieved. He went through his whole life with Tourettes with no diagnosis. He didn't know why he couldn't control his movements. As a child, he was ashamed of himself. Now, he had an answer, and he felt free.
Lance and I had many discussions, after Caleb's initial diagnosis. What kind of life would he live? How would we handle his tics? How would we treat him? But, one of our main questions was...will this be a private, family matter or will we share this with the world? We had to first take into consideration how Caleb might feel as an adult. Would he be upset with us for telling people? We discussed this topic a lot. This is when I fell upon the TSA (Touretts Syndrome Association). It amazed me at the pride these people, who suffered with TS, had. They were advocates. I learned of many successful athletes, actors, politicians, etc., who suffered from Tourettes. But, they were not ashamed. They did not let TS hold them back. They prevailed. And I realized, this is what my hopes were for Caleb. I wanted him to know he was supported. He had a voice. He can be/do anything. And, the number one thing, we would never be ashamed of his Tourettes.
Once we shared our story on Facebook, we were overwhelmed by all the support. But, we were, also, taken back. Some people thought we were doing the wrong thing. We shouldn't tell people. Now, people would look at Caleb differently. It hurt my heart to hear this. Yes, I understood where they were coming from. And, believe me, I had the same fears. But, there will come a time when Caleb will notice his tics. And, he will have questions. What about when kids begin to make fun of him? Will he know how to respond? Will he be proud? Will he be able to stick up for himself? I wanted him to know, at an early age, that Tourette's was a part of him. How God made him. And, we would never be ashamed of that.
It has now been a year since Caleb's diagnosis, and, honestly, not much has changed. Caleb lives a normal 4year old life. We call him our wild child, because he's always into mischief. But, he is also our lover. He has the sweetest heart, and lives for the opportunity to show his love for others. Lance and I always say...Caleb gives the best kisses.
Some days we are reminded of his tics. He started t-ball this year, and he is beyond ecstatic. But, excitement and anxiety exasperates his tics. It broke my heart to watch him on the field, standing at second base, tic-ing uncontrollably. But, I have to remind myself that he is ok, and he is having fun.
He is starting to notice his tics more too. I will catch him trying to hold his arm down, so it won't tic. Or, when he is having facial tics, he will run up to me and hug me. I just hold him and try to move his attention to something else. I know it won't be long before he begins asking us why he does these things. And, I am so happy he has his dad to relate to and look up to. His dad will know his suffering, and will be able to tell him stories about his own suffering.
We hope and pray that a cure will be found soon. But, until then, it is our mission to raise awareness for this disorder. And, also, debunk the myths that everyone, who has tourettes, shouts and says obscene things.
I encourage those, who are interested, to visit our Team TSA page. We will be participating in the Disney 5K, 10K, and Half Marathon to raise money and awareness for the Tourette Syndrome Association.
