Tourette Syndrome & Tic Disorders Support Group

Shelley, I have copied something that I posted several weeks ago. I do not know if you read it or not but even if you did I think you should read it again. Here it is:

You know how when you get married and start planning for your family how you have really big dreams? You have it all planned out in your head. As parents of children with a disability we all know how our dreams can be different from reality.

I don't know if any of you have heard this story before, but I had a father of an autistic child tell me this today. Here is the story:

Say you've always wanted to go to Paris. You have planned your whole life to make this trip and it has taken you 10 years to save enough money to go. You plan your trip, get your passport, buy your tickets, pack your suitcases, hop on the plane and sit back and wait for the long flight. When the plane lands, you are so excited because your dream is finally coming true. You are walking off the plane and when you go through the door people are standing there welcoming you to Holland. Holland? I didn't want to go to Holland! I wanted to go to Paris. What happened to my dream of going to Paris? I planned for Paris! Well, you are not in Paris, you are in Holland. Holland is a very nice place to be. It is a beautiful country. It has the most gorgeous flowers. It has windmills. It has wooden shoes. You will love Holland even though you planned for Paris.

I love this story. I believe we can all relate to it. There have been several people to come and go in this group. A couple have come on and written that they are just not ready to accept that their child has TS much less all the other stuff that goes along with it. I can understand that. We all go through a host of emotions when we first get a diagnosis for our child. I even read where one mom said she has so much going on right now that she is too busy to deal with her son. That post was several months ago and I keep checking and haven't seen her back on. I thought that maybe she was just having a hard time. If any of us have a hard time the others on here can pick us up and get us through. Let's stick together.

Maybe we don't have Paris, but we sure have Holland. Holland is a nice place to be.

I wouldn't trade Wesley for anything. Not even Paris.

Tourette Syndrome by itself or Tourette Syndrome with all the extras that can come with it is not terminal. It is not a diagnosis that will make Hunters life end early. If you have never met anyone else with Tourette Syndrome in person, then I would suggest that you find someone nearby and get with them so that you can see for yourself that Hunter can and will still have a full life. The first time I met with others that their children had TS, I was amazed. I was amazed because I had this wild thought of what Wesley would turn out to be inside my head. I was with a group of people with TS ranging in ages from 6 to 40. If I hadn't been told, I wouldn't have even known that the majority of them had TS. I don't know where you live but if it is anywhere near me I would love for you to meet my son Wesley. He is 9 years old. He had Tourette Syndrome with OCD, Anxiety Disorder, Attention Disorder, and lots of sensory issues. He functions very well and yes, we do have our days because TS waxes and wanes (worse and better) and I have my days as his mother and my husband as his father that we think he and all of us have been dealt a bad hand, but he is our child and he is perfect.

Please understand that what you are going through is normal. It is a grieving process. You are grieving for the child you had planned out in your head. I am a Christian and I believe strongly in the power of prayer. I also have a strong faith in God and I think that sometimes we are tested to see how we handle what is sent our way, and where we will put our faith.

What state do you live in? I would love for you to meet Wesley. If it is not possible, find someone that you are close to. I know it will help you.

Keep in touch. It will get better.

If your son is young, they wait a year to dx ts because it can be transitory. Honestly, you don't want a hurried dx because you don't want to start him on meds he doesn't need. My son waited a year for his dx and when it came, believe it or not, I was relieved. Very often, if it isn't a severe case, it sort of fades out to something more innocuous after puberty. It can come with other ... gifts ... that aren't so innocuous, but the tics are the least of my worries now. My son is 13, probably on the cusp of puberty and I'm waiting for the worst of it. But then, I have lots of hope that it will fade. Don't sweat this too much.

Hi Shillo,

I hope you're having a better day today. I know how every day can be different. I just read your message from a few days ago and I can completely relate to you. I also awake to a bad dream and wait to hear a tic or see a tic. Prayers have gone unanswered and I feel I will forever be lost. BUT he needs me and that is all that pushes me to go on.

I just yesterady received a Tourettes diagnosis for my son. Even though I knew it in my mind, I was not ready to hear the words. I never will be. I am dealing with a mix of emotions with the worst of it "fear".

In our situation, my son's tics began at 5 1/2 and now at 7 he was just diagnosed. When I took him in back then, I was told that the Tourettes diagnosis would have to be determined a year from when the tics began as part of the criteria. Yesterday, he matched the criteria for diagnosis for the following reasons:

1. The tics occurred for at least a year, this includes the coming and going of them and very simple ones. (Even though for 1 1/2 years the tics were very mild and at times gone.)

2. The tics have to include:
a) at least one vocal tic during this time
b) and complex motor tics (simultaneous simple tics).

A pediatric neurologist at our children's hospital is who made the diagnosis.

I did find a specialist 4 hours away that I want to meet with to ask more questions.

I can say that I was told that 1 in 4 children (especially boys) have tics up to the age of 12.

What made me realize that it was possibly TS and not a transient tic is that since May he has started the complex tics and this month had his first vocal tic. Prior, his tics were never vocal and the motor tics were simple.

Does that help explain it better?

Hi Shillo,

I hope you're having a better day today. I know how every day can be different. I just read your message from a few days ago and I can completely relate to you. I also awake to a bad dream and wait to hear a tic or see a tic. Prayers have gone unanswered and I feel I will forever be lost. BUT he needs me and that is all that pushes me to go on.

I just yesterady received a Tourettes diagnosis for my son. Even though I knew it in my mind, I was not ready to hear the words. I never will be. I am dealing with a mix of emotions with the worst of it "fear".

In our situation, my son's tics began at 5 1/2 and now at 7 he was just diagnosed. When I took him in back then, I was told that the Tourettes diagnosis would have to be determined a year from when the tics began as part of the criteria. Yesterday, he matched the criteria for diagnosis for the following reasons:

1. The tics occurred for at least a year, this includes the coming and going of them and very simple ones. (Even though for 1 1/2 years the tics were very mild and at times gone.)

2. The tics have to include:
a) at least one vocal tic during this time
b) and complex motor tics (simultaneous simple tics).

A pediatric neurologist at our children's hospital is who made the diagnosis.

I did find a specialist 4 hours away that I want to meet with to ask more questions.

I can say that I was told that 1 in 4 children (especially boys) have tics up to the age of 12.

What made me realize that it was possibly TS and not a transient tic is that since May he has started the complex tics and this month had his first vocal tic. Prior, his tics were never vocal and the motor tics were simple.

Does that help explain it better?

thanks guys,,the support is great here...

wesq, unfortunately, my niece who is 18 has severe tourettes that is why I am so worried,, i have seen her grow up, and I remember saying to my sister i dont know how you do it,, if my child ever did that i would have to give them away, i cant believe i said that, because of course i would never give hunter away, my niece had to go live in a group home by the age of 11 because my sister could not handle her at home.. she was the severe case that started banging her head on cement floors at 2, she had a brain injury at 6 weeks old, hunters stroke was at at birth, this is why i worry, hunter is terrified of erin,, she is way better now though, her tics have stopped since she stopped her medication, but her ocd is out of control.. this is why I am scared

If it helps, even Tourettes can sort of fade into remission as the child gets older. This happened to me, around puberty they started becoming almost unnoticable. Now in my case they did return in my adult years but that does not always happen. From what I have read it is actually pretty common for kids with TS to have a remission and sometimes complete disappearance of the symptoms as they get older, so all is not lost. Everyone is different and you really cannot predict what will happen. Just remember, whether the symptoms fade or not, most adults I know with TS, myself included, are happy and productive and do not experience the social 'shunning' that tends to happen in childhood. Also, it is my opinion that people with TS, ADD, or other disorders along that spectrum have gifts and strengths in other areas, such as creativity, sensitivity, and compassion. It is seen as anecdotal evidence but it is amazing how many kids and adults with TS are extremely talented in some way, in music, art, sports, etc. So there are positives about having this disorder. Hope this helps.