Wednesday, August 17, 2011

Don't just stare. Ask me about my Tourette.

 "Don't just stare.  Ask me about my Tourette."

That was what my son was screaming as loud as his heart could be heard, but without saying a word.

Matthew has been going to Karate Camp all this week.  Before I start to share about what prompted this post I have to say that he is having a great time!  It is fun and he is learning a lot.  Each day I have picked him up I ask if he wants to go back and he responds with a definite "Yes!".

But, for a kid with Tourette trying something new and adventurous like this doesn't come without obstacles to overcome and lots of bravery to muster up.  First of all, the change in routine is enough to jump start a bag of new tics and OCD behaviors.  But, Matthew doesn't shy away from the challenge.  His motto...."I have Tourette's, but Tourette's doesn't have me."

So, onward we go.....

Camp started Monday.  Great day.  No new tics.  Tuesday morning comes and as we are getting ready to go back to camp I notice his vocal tics are a lot louder and more rapid than "normal".  I ignore it (like I always do because that's what is best).  Matthew is doing more pattern and OCD behaviors than "normal" for his morning routine.  Hmmmm....what's up?

I send Matthew off to get dressed and when he comes out *finally* I look quickly and notice the shirt he has on is too small for him.  I ask him to go change.  He just stands there.  Then, I look closer and realize that it is his t-shirt from the Florida Tourette Syndrome Family Weekend we went to earlier this year.  I look into his big brown eyes that are watery with tears and I say "You really want to wear that shirt?".  He nods his head as a tear rolls down his cheek.  I swallow the large lump that has formed in my throat and I say, "Do you want people to ask you about your Tourette?".  He nods again and his bottom lip trembles.  I hug him and tell him how brave he is and how wonderfully God has made him.  He says to me....

"If they know about my Tourette's, then maybe they won't stare."

Now, I don't know who was staring.  It might have only been one person and only one time!  Noone at camp has been mean to him.  Remember, he is having fun!  But, for Matthew it is just one more time that he feels misunderstood.  Matthew doesn't mind being different, silly, weird, odd, coo-coo....
I try to teach him that people are curious creatures and that sometimes people will stare at things they don't understand, that they are curious about, or that interest them.  Lucky Matthew!  He is the subject of curiosity!

So, off to camp he the 2 sizes too small shirt...

Can you imagine how much I prayed for him during the day?  Lord, give him strength.  Help him to be brave.  Show him that he is fearfully and wonderfully made.  Let him know that you have given him a gift; one that can open the hearts and minds of others.  Give him the opportunity to share about how amazingly unique he is and how he can do all things through Christ who strengthens him.  Oh, Lord, hear my prayer!

I picked him up from camp and everything looked great!  Smiles, laughing, detailed run-down of the day's events. *Sigh*  So, I have to ask...."How did the shirt work out today?"

"It was a good day today and I think it's going to be a good one tomorrow too."

Now, what that means in detail, I don't know.  Did he get to talk to someone about his Tourette?  Did the shirt speak for itself?  I didn't press for the answers.  All I knew was that my brave son had conquered an obstacle, he moved forward with his heart on his sleeve (literally), and he was reminded once again that nothing can stop him from having joy in his life.  That's all I need to know.

Tourette doesn't define Matthew.  If you ask him to tell you about himself, he may not even mention it, or it may be mentioned after the long list of other things he likes about himself like that he loves legos, he's an awesome reader, he is a purple belt in karate, he plays the guitar and he loves doing science experiments.  But, the Tourette is always there - ticking away.  The OCD is always there.  The hearing aid is always there.  You can try to ignore it, but it doesn't go away.  Matthew tries to push his tics inside when he is around people he doesn't know very well because he doesn't like that it makes him feel weird.  It takes a tremendous amount of energy and sometimes makes his tics worse.  So, in the words of Matthew....

"Don't just stare.  Ask me about my Tourette."


  1. What a beautiful post. You have a special young man there. Can you imagine what the Lord can do through him? There are a great number of adults who couldn't handle things with that much grace.

  2. As a mom to a child with Autism as well as an extemely white blood cell disease that leaves orange lesions on his face and body, I think I can relate what you are saying about the stares too. But you're so right; those things don't define them. Thanks for sharing!

  3. Wonderful post and what a great kid you have there!

  4. Thank you for sharing such beautiful thoughts; you have an amazing son!

  5. Reading this brought tears to my eyes. What a beautiful boy, and what a wonderful post. Thank you.

  6. Doreen- Thank you so much for sharing. My daughter would so love to be his friend. You see, she understands as she struggles with Asperger's. I know people wonder all the time about her. She is the first person to stick up for everyone and yet no one ever sticks up for her. It is heartbreaking. I pray a lot, too. So good to know that the Lord has a plan for our wonderful kiddos.:) Lori

  7. Logan said him and Matthew can be in the Awesomeosity Club;-) Love that kid! He is very brave!!!!

  8. Thank you for this story! Your son sounds so smart and brave:) Good for him! I have some children with emotional issues that are quite hidden, but it makes their lives hard sometimes and I just wish everyone was more kind! Tell Matthew we think he is wonderful!

  9. Thank you so much for this post. I really needed it to day. What a special family you are.


  10. I like your family and your posts. I am your newest follower on NetworkedBlogs.

  11. I am enjoying your view (and your son's.) Thanks for linking up with the blog hop!

  12. Beautiful post! We are definitely on the same page when it comes to advocating for our wonderful blessings. Thanks so much for stopping by my blog and leaving an encouraging comment! :)

    God bless you!
    Lisa @ Heritage Homestead and Homeschool

  13. Me and my son totally and completely understand! Great post!