Wednesday, February 27, 2013

How to explain?

B has been noticing his tics. The other day he told his teacher "sometimes I blink a lot, or bend my head, but I can't stop". Oh, heartbreaking!

So I will be talking to B about his TS soon. He is such a strong young man and I know he can handle it. I was just hoping we could keep it from him or a while.

But why? Why would I want to keep this from B? Is it to protect him? Is it so he doesn't FEEL different? Is it so he will still be the outgoing, ambitious kid he's always been? Is it so he doesn't use his TS as an excuse not to succeed and to not do his best? Well, honestly, yes! All of the above! As his mother I want to protect him. Honestly I wish I could take this away from him completely but I know I can't. So instead I thought I was protecting him from... Well... from himself if I truly look at my actions.

Does that make me a bad mother? Maybe. But I know now that it is not right to hide his disease from him. It's not right to try to "sweep it under the rug" until he's old enough to pull up the rug himself.

So I will be sharing with Ben what it is that he is dealing with. I am going to tell him "its" name, explaining what it means to him and his life. Letting him know that this will NOT hold him back. Let him know that this does NOT make him any less amazing. Let him know that this is a challenge and it is his job to rise to it and to overcoming it. No, it won't go away, but it WILL make him stronger!

I found this great story online that I will be reading to him.
I also found a newsletter, including several past newsletters, called "That Darn Tic". It is by kids, for kids with Tourette's. I think it will be good for B to read about other children with TS. They can be found here:

I also found a great site for my husband and me as parents! Of course I wish this wasn't something I had to do, but I am so grateful for this new found resource and am excited to explore all the information.

The Letter

Welcome to my new blog. I have started this blog for a few reasons. First of all I needed an outlet, someplace where I can freely express my feelings and thoughts. "Why not in a private journal", you ask? Because I am hoping to be able to connect with other parents, get advice, and maybe my thoughts and experiences with help others along their way as well. Please feel free to leave comments, to share this blog with your friends, etc.

To start us off I am sharing the letter that I wrote to our family and friends explaining about our son's new diagnoses of Tourette's Syndrome. He is our third child, an amazing 7 year old! I have shortened his name to "B" because this blog can be read by anyone and I want to protect his privacy.

Dear Family and Friends,

We have recently discovered that our son, B, has Tourette Syndrome. Here is a website if you would like more information about TS: 

B is currently displaying several tics; eye blinking (simple motor), bending his head down, opening his mouth, and rubbing his chin on his chest (simple motor), gulping noise with his throat (simple vocal), jumping (complex motor), and interrupting or blurting out what he's thinking (complex vocal). In the past he has also had a throat clearing tic and a sniffling tic that may or may not resurface.

B's tics will worsen if he is stressed, excited, or tired. Also random things can bring on a tic. For example: if he is looking at you in the eyes as you are talking with him and you blink and he notices that then his blinking tic may start up.

Tourette Syndrome usually worsens throughout childhood, peaking in the early teens. Then they usually lessen. This is usually because as they get older they are able to control the tics better. 

There is medication for TS, but because B's tics do not alter his life or interfere with anyone else's we are choosing not to medicate him at this time. We also do not want to run the risk of side effects from pharmaceuticals. We will be doing some therapies at home with him and looking into essential oils and other natural treatments. We will also be seeking additional medical advice but are waiting to see what will happen with medical care and insurance in the country. 

We are letting you know this so that you can be patient with him and recognize his tics as being a medical condition, not B being disrespectful, rude, or hyper. If you notice another child giving B a hard time about a tic, please help that child understand that it is not B's fault. Also, if you happen to notice something that may be a new tic, you can let us know about it and what was going on when it came about. Like most TS patients his tics come and go and he can go quite a while without experiencing any. Right now, however, he has been doing them quite a bit. We think that may be due to all the Holiday excitement.

We have a friend who is a successful adult with a beautiful family and he has Tourettes. I talked to him in length about it and he helped me to understand many things about TS. One thing I will pass on to you is that tics are a lot like an itch, or sneeze. The more you try to not itch it or try not to sneeze the worse the urge becomes and you know it will feel better if you just do it. 

We are not going to be telling B about his this yet. We do not want him to think he is any different from other children. We want him to make goals and reach for dreams as vigorously as he always has. As he gets older and more aware of what his body is doing we will, in our own time and in our own way, tell him. That may be a year from now, or when he's eleven. Our older children do know. 

This has been hard for me as his mom. I was sitting in church a couple weeks ago and I was thinking about sweet little B and all he's been through in his short life and I thought to myself, as I choked back tears, "what more does my son have to endure? when will it be enough?" Instantly the words came to my mind, "That's what Mary asked." Wow! I was quickly humbled. I know that Jesus suffered and endured all so that he can be the One we can always turn to for solace, support, and strength  I know our Savior loves B and will be B's strength. 

I know this will be a challenge for B throughout his life. But it is a challenge that his Heavenly Father has given him to strengthen him and to strengthen us. We will all grow and become better people for knowing B. I believe he will grow up to live a long, successful and happy life. I have faith that Heavenly Father has a plan for us all and that plan has been in place from the very beginning.
I have another story to share about B. When he was a few months old I was standing in the checkout line at a grocery store and a tiny little elderly woman came up and looked at B with wonder in her eyes and said, "Oh my, that child has such a wise soul, you are so blessed to be his mother." She gently squeezed my arm and walked away. I was humbled then as well. I am so very blessed to be B's mom. All of our children are such blessings and I am so grateful for them! 

Thank you for reading this and thank you for your support for our family!