Wednesday, May 4, 2011

Letting Go.....step by step

With Mother's Day coming up, I tend to get sentimental.  Seems like yesterday, my son was just starting to take baby steps, learning to walk.  Now he is 15 years old and is learning to take baby steps of a different kind—steps of independence, of becoming an incredible young man.  And just as we did at 14 months old, I'm still learning to let go, knowing that at times he might stumble and get hurt in the process.

My son was diagnosed with Tourette Syndrome (TS) when he was seven years old.  Before his diagnosis, I doubt my husband or I could have answered the question “What is Tourette Syndrome?”  Now it seems that sometimes we explain it on a daily basis.  We struggled finding the right medical care for him, and began the process of trying different medicines to help him with the symptoms of Tourette Syndrome.    In 2005, I stumbled upon an article about a doctor who was familiar with Tourette Syndrome (TS) and was involved in research for TS and Obsessive Compulsive Disorder (OCD).  We contacted him and soon thereafter began travelling (two hours one way) for CBT therapy to help with my son's OCD.  Finally, after three years of going from doctor to doctor, we had found someone who could help.  Not only could he help, but we were included in a medical study which meant we received this therapy at no cost!  (Therapy which is usually about $300 per session.)  It was quite obvious to us as this point that God had his hand in this.  We began seeing some progress with my son's OCD and with his TS and finally began to breathe a sigh of relief. 

As is common with Tourette Syndrome, once he began getting closer to puberty, the TS and tics started to rev their engines up once more.  So once again, we began weekly visits to our doctor—still a 2 hour drive one way.  And once again, God provided.  We were able to be included in a medical study that “coincidentally” was geared specifically for kids his age—learning to cope and manage life with Tourette Syndrome.  Again, we’ve seen great progress….although we have learned and experienced that the only consistent thing about TS is that it isn’t consistent!

When my son was first diagnosed with Tourette Syndrome, I think it would be fair to say that we went through a sort of grieving process.  We thought some of the dreams we had for his life would be unattainable now.  What we are beginning to realize more and more, is that those dreams are REACHABLE, but the path to get to those dreams may look a little different than we had envisioned.  Now, instead of being embarrassed by his TS, he has begun to embrace it, and see that perhaps God has placed this in his life to give him a platform to help others. 

Last spring, my son was trained as a Youth Ambassador for the Tourette Syndrome Association.  Now he is equipped to go into schools and other settings and share with his peers and others about Tourette Syndrome. He has been interviewed by several newspapers and many have been encouraged by his boldness.   He has spoken to a psychology class at a community college, elementary schools, education fairs, support groups, and with his classmates.  Each time he speaks about TS, I see his self esteem grow a little more.
The past eight years have been quite a journey, but God has been faithful.  Now as my son finishes up ninth grade, we once again have more steps to take.  He's just recently received his passport....the next big step is going on a mission trip with his youth group to Nicaragua in June.  This is a HUGE step for me as his mom!  And no, I'm not going, but I have my passport just in case!  This young man has more compassion in his heart than any other 15 year old boy I know.  He'll do's me I'm worried about!

As hard as it is to let go, I know it's the right thing to do.  Do I still worry?  Absolutely!  But as I sit back and watch what an amazing young man he is becoming, I realize he's going to be just fine.....and he's going to make a difference in this old world!

Monday, April 25, 2011

It's more than just tics.....really!

How many times have I shared about my son's Tourette Syndrome, only to be told, "I just don't see it....he seems so 'normal'."  Duh!  He is normal....he just happens to also have TS!

We are among the fortunate, my son's tics are not as severe as a lot of others.  He usually suppresses a lot of it, and then lets it all out at home.  There are pros and cons to PRO - is that his classmates are not always aware that he has TS and never think twice about it.  CON - his teachers or other adults may not understand the amount of energy and effort he is putting forth to keep control of his tics and assume his life is just peachy.  What they don't see is the tic explosions at home, the rage outbursts, the meltdowns, and frustrations from holding it in all day.  Or the havoc that it can play on family life.

Ever had a night when the whole evening crumbled in front of your eyes, because you made the mistake of mentioning one thing for dinner, and ended up having to make something else?  Or been in line at DisneyWorld for that favorite ride you promised, only to have them tell you the ride is being shut down....which leads to a major meltdown.  Everyone thinks you have a bratty kid, and in the meantime you're trying to save the day for your child and for your family.  Disney is a little less magical at that point.

Sometimes I've secretly wished for the tics to explode more in public, just so others will see we're not faking it!  Others without TS seem to think that motor or verbal tics are the worst of it all.  And granted, they are no joy, and we struggle with those at times too.  However, the "unseens" have caused more heartache in our family than the tics.  You can't exactly explain to the family in front of you at DisneyWorld that your child has anxiety issues and OCD.....and he really can't control the way he's acting.  And why should we owe anyone an explanation to begin with?

So yes, it's more than tics.....way more than just tics.....