Tuesday, October 22, 2013

Feeling Defensive

B is doing good. His ticks were "almost" non-existent throughout the summer. However, school started, sports started, weather turned colder, allergies flared up, etc. etc. and something or a combination of somethings has caused him to start ticking again. It's not terrible. It's not something that everyone notices and focuses on. But it is something that some people and kids have noticed enough to say something to him about it. That bothers him. It is bad enough some days that he complains about it, or it even effects his school work. He will tell me that his eyes are just so tired, or he couldn't stop blinking, or turning his head, etc and he couldn't think because of it. Poor kid.

I know he is not as bad as many others with tourette's. I know his case is mild and it could be so much worse. But that does not diminish the fact that he struggles with this on a daily basis. It does not diminish the fact that he suffers because of it and we, his parents and family, feel helpless and would give anything to make it all go away.

A parent at the school noticed B blinking a lot. She asked him "do your eyes hurt?" Being a little embarrassed, he said "no" and ran off to play. She then turned to me and said "you should get his prescription checked, maybe he needs new glasses. I replied "Well, he actually has tourette's" She said, "Oh! How did you learn that?" I then proceeded to tell her our story to which she responded, "well, at least its not a big deal for him." ....... There was a long pause as I pushed back all the things that came to my mind to say that would not have ended well and I finally said, "some days it is". She then tried to backpedal and was just digging herself a bigger hole. She tried to say that at least he doesn't shout out random words and isn't a "nuisance on society". What the?!?!?!?!?!?!?

First of all, we don't know how bad B will get. He may stay at the "mild" level (we hope!) or his TTS may progress and get worse and worse. Once children hit puberty it usually escalates and by age 14-16 someone with TTS is about as "bad" as it will get. What if B does get "that bad"? Some people, like this woman, would think of him as a "nuisance on society"?! And to look at B and say its "not a big deal" for him is like looking at a paraplegic and comparing him to a quadriplegic and saying "its not a big deal for him, at least he can use his arms". Each trial is extremely hard and related yet different. Each person has to learn to deal with their unique circumstances the best they can and that in itself is a trial. Just because our son's ticks are not as noticeable in a room full of people and he isn't having full body spasms or shouting out random words, does not mean he doesn't struggle with his TTS on a regular basis. He is still self conscious of them. They still exhaust his muscles and his mind. And it is still very very hard as a parent to watch your child go through this and there is nothing you can do to take it away and make it better!!!!

I wish I could've said, "everyone is unique, we all have trials. B's trials are many. We count our blessings to have him with us because he was so premature that he almost didn't stay. I will take B and his tourette's and his allergies, and everything about him good and bad, and be grateful for everyday. I don't know what trials you or your children go through and would never suppose that your life was "easy" because no one's life is. I would only ask that you pray for our B. Please understand that he is unique just like every other child on this playground. He is very "special", both in what he struggles with, and in his many talents and amazing qualities. We take good care of him. We do not focus on his challenges yet are constantly mindful of his special needs. We treat all four of our children the same and love them equally. To assume you know enough to judge someone is just not a good idea."

But I didn't. I simply turned to her and said, "I don't see nuisances, only blessings." She looked at me and said, "ya, you're right. I'm sorry."

So in the end I am glad that I "thought before I spoke" and held my tongue. It is the hardest thing to do when your feeling defensive, especially about your child!