This morning I went to the shoulder doctor with my mom (who just had shoulder surgery) because her appointment was right after my psychiatry appointment. While I was sitting in the waiting room, a 4 year old boy, his dad, and his grandma came in. The boy was frequently moving his arms, neck, and shoulders and I'd have to say, I know tics when I see them. The grandma kept bugging him about it and asking him "I've noticed your moving your shoulders a lot. Are they tired? Are they bothering you? Are they sore?" The boy answered "No" to every question and while she was talking about it, his movements really increased. I really felt for the little boy, and remembered all those years of not knowing why I ticced yet still having to dodge other people's questions or try to make up something that sounded legitimate. So I decided to write a note on a piece of paper. I wrote down on the paper that she should get her grandson checked out for a transient tic disorder or Tourette's Syndrome and that she should bring him to a pediatric neurologist. I wrote that telling him to stop will only make it worse. Then when the family came back out, I dropped the note in the grandma's purse without her noticing. I don't know if she will ever find it in there, but I sure hope she does. I asked the people on my facebook page and on twitter what they would have done in this situation and if they think I did the right thing. So far I am getting very positive comments. Here are some of the comments I have gotten so far.
" I think that is pretty awesome actually"
"As a mom, I would have been eternally grateful to you! Moms share info - it's what we do. One of us can't possibly know everything so we depend on the info of others to help guide us in raising our children. I can only imagine you expressing something like that thoughtfully and compassionately. Personally, I would have been open to you even saying it to me directly - unless my child was old enough to have been aware of our conversation. Great job thinking of writing it down!"
"I think what you did was brilliant, More awareness is definitely needed, I wonder if posters in dr surgeries would help?"
" I think you were very brave to want to try to help. I'm way more pushy, probably because I'm old! But, I would have struck up a conversation if possible, and asked benign questions like "does he have occasions where he has involuntary moment when he get's stressed, or worried"? And, I love your comment about how he might have a transient tic disorder. Because, that doesn't try to diagnose, but just helps her pinpoint that it could be a neurologically based condition and give them a direction to go in. When you feel more comfortable, you might mention all that you went through to discover the cause of your symptoms, and how you hope that sharing might help them. Very brave"
"I think you did exactly the right thing! My youngest started recently and I find it so much easier knowing from
his brother. Hope that grandma finds the note!"
"Great job, thats the goal, to help others"
"Oh sweet heart you absolutely did the right thing, and you re so brave!! Im proud of you! I wish someone wouldve done that for my parents. They would always tell me to just "cut it out". Even now that my son has Tourette's too my Dad still thinks its caused by being nervous instead of a nerological disorder. Pisses me off, but oh well, some people dont like "labels" and so they ignore their childrens needs. Hopefully you pointing it out to that family will make a difference in that childs life."
I think I did the right thing because my life as a child would have been 100X easier if someone had given me or my mom the answer we had been looking for written out on a note like that. I wish someone would have done that for my parents. My parents told me to "cut it out" and "stop it" all my childhood and never thought that something could be neurologically wrong. My parents had a hard time accepting the diagnosis, but I think that things would have been better somehow if I was diagnosed when I was younger. I really hope that I made a difference in that child's life. Maybe I was meant to be in that office today so that I could write the note and maybe I made a difference in this little boy's life. I sure hope so. :)
Besides this, I am going to be showing my TS documentary to my senior class tomorrow. I've planned out what I am going to say to introduce it, which has included practicing time and time again while in the shower. And I am going to meet with the tech teacher so she can show me how to set up the tech stuff in order to show the documentary. I sure hope all goes well tomorrow. I realize that showing my documentary will probably open people up to asking questions, telling me what they thought about the documentary, or talking to me personally about Tourette's, but I seem to be feeling okay with this. When I show my documentary, I will be bringing all of my classmates into my world, even if just for 30 minutes. I want them to know more about Tourette's, know more about what it is like to live with it, and hopefully help increase their compassion for any other type of differences that a person may have.