I don't see it...

There is one comment that seems to be heard by just about every single one of us that has a child with TS.  At some point or another, quite often within the first few months of diagnosis, it seems like we all hear the words "I don't see it".  While the words may be quite harmless, there are other times when the words can end up being more hurtful.  Often times, it seems those words come at a time when we need the support of our family and friends, and rather than getting that support, we instead hear them casting their doubt.

I think there are a number of factors that can come into play as to whether or not someone "sees it."  Those that only see the child once in a while may just be seeing him at times when tics are waning rather than waxing (at a calm time rather than a time when tics are more out of control).  Another factor can be whether or not the child is comfortable around the person that doesn't see it.  Oftentimes, the child will hold in the tics until they are more comfortable, leading to an overabundance of tics once the child is once again in his comfort zone.  There is also the possibility that those that see the child regularly aren't seeing the tics because they've come to be typical behavior for the child, leading to the tics going unnoticed.

Mothers, on the other hand, are often more tuned in to the things that affect our children.  We have a sense when something is wrong, when there is something more than just habitual behaviors going on.  We tend to have a better understanding that our children need our help to overcome the obstacles that they are facing ahead of them.  Just because you don't see it doesn't mean that we don't see it.  When we do come to that realization, when we accept that our children are different, we need the support of those around us.  We don't want to hear the doubts cast our way.  We don't want to have to explain what or why or how... We just want to know that we can turn to our friends and family for support.  Most importantly, we want to know that you accept our children for who they are, not for who you want them to be.

What makes him special

I think that Monster Man benefited from the several months that passed between the time that we first started to suspect Tourette Syndrome and the time that he was actually diagnosed. It gave him a lot of time to learn about TS and to get comfortable with the diagnosis. By the time that the doctor looked at me and said "He does have Tourette Syndrome", Monster Man and I were both able to just reply with "okay." There was no shock, no upset. In fact, we were more relieved. We were relieved to have an official diagnosis, to know that we were for sure dealing with what we'd thought we were dealing with. We were prepared, and we could face this challenge head-on.

Over the past few days, we've been discussing the medical research study that Monster Man may have the opportunity to become involved in. We talked about the benefits, as well as the risks. Believe it or not, Monster Man actually expressed that he was concerned that he'd lose his tics. He has told us, on more than one occasion, that the tics are part of what makes him special. He likes being different, having something that sets him apart from the other kids. His biggest concern, as is ours, is the level of anxiety he deals with on pretty much a daily basis. He wants something that will help take the anxiety away from him, and he's okay if the medication limits the number of tics, but he wants to keep on tic-ing.

I'm really impressed with how well Monster Man has faced this challenge!

In the beginning

We've always known that Monster Man was different. From the time he could talk, he always did things his own way. He didn't like pizza when he was younger, concerned about the pizza sauce getting on his hands (he had no problem with other foods covering him, oddly enough). He didn't like ice cream when he was little, either, choosing instead to have warmer treats than something so cold. Now, at the age of ten, he still doesn't like having milk on his cereal since he says it changes the texture. Those are just a few of the things we noticed, all centered around food, but there were many other things that have always seemed different.

Monster Man has always had an extremely active imagination. From shortly after his second birthday until well after his fifth, he believed that he was Santa. Not just believing in Santa, but truly believing that he was the man in red himself. He wore a red sweatsuit and Santa hat nearly everywhere he went, introducing himself to kids as Santa Claus. He spent hours on end 'practicing' flying his sleigh. He asked for 'real reindeer that can fly' for Christmas. He took imagination to a whole new level, so much so in fact that we often heard comments about whether or not he was normal.

Over time, we came up for a simple answer for why he did things the way that he did. "Because he's Monster Man." We used this answer for just about everything he did. Why did he have to create crazy voices and repeat lines from movies while we watched them? Why did he insist on always wearing his socks inside out? Why did he have to have his food cut just the right way, including having his PBJ cut into four triangles? Why did he get so easily upset when he couldn't get things done just right? Why was he such a perfectionist with his school work? Why did he seem so quirky? Why does he seem like such a spazz? All these questions, and probably a thousand others, were answered the same way.

Out of all three of my children, Monster Man always seemed to be the sickest. What might be a mild cold for Angel Baby would turn out to be a major illness for Monster Man. I remember waking up one morning when he was five weeks old and finding him blue. It was just the start of many respiratory problems he has faced, especially over the course of his first eighteen months of life. During that time, he spent a total of fifteen months sick, with only a few healthy days scattered here and there between illnesses. RSV, bronchitis (three times), and pneumonia (twice) plagued the poor baby, though he rarely let them bring him down. As he got older, he still continued to get extremely sick. He fought off numerous cases of strep, scarlet fever, and ear infections. He ended up with mono in kindergarten and Lyme disease at the end of second grade. It seemed like if anyone was going to get something major, it was going to be Monster Man.

Somewhere around the time that he came down with Lyme disease, Monster Man started having problems with what we thought were allergies. He blinked a lot, really forceful blinks that looked like his eyes were really bothering him. He started clearing his throat all the time, as well. We started treating him with Claritin, hoping to help ease the symptoms he was experiencing. Angel Baby has severe allergies, so it only seemed right that the symptoms Monster Man was experiencing were related to allergies as well. Unfortunately, the more we worked to get rid of the symptoms, the worse the blinking and throat clearing got.

I finally mentioned the symptoms to the pediatrician this past January, nearly two years after the first of the symptoms began. It wasn't until then that we realized that these weren't allergy symptoms at all. Instead, they were tics. He was referred to a pediatric neurologist, though his doctor told me it didn't necessarily mean that he had Tourettes. It took us nearly 10 full months to get an appointment that stuck (the appointments kept getting rescheduled by the office), and by then Monster Man had developed many other tics. In fact, we had seen a total of almost 20 tics by the time that he was finally seen and diagnosed.

And so begins my blogging journey as we experience Monster Man's struggles and triumphs with Tourettes Syndrome.