Tourette Syndrome & Tic Disorders Support Group

This community is dedicated to those afflicted with a tic disorder. A tic disorder is one in which uncontrollable muscle spasms that can range from small annoyances to major disruptive occurrences. .

304 Members
840 Posts
0 Online
Children's Mental Health
/ Tourette Syndrome & Tic Disorders Support Group

Feeling Disturbingly Unsympathetic

deleted_user
deleted_user
I need help and advice. My son was recently diagnosed with a Tic Disorder. While I feel sad and a bit distressed about how to best support him, I am starting to notice patterns of when his tics are more prominent and when there seem to be none at all.

This summer we moved 1400 miles from California to Nebraska and as much as I expected my son to experience increased anxiety and stress thus increasing his tics, he transitioned really well. That is until school started. At first, even school seemed to be a smooth transition but just as in years past he started getting in trouble for disrupting the class.

Now to explain, he has motor tics and to my eye they are easily identifyable. But he also likes to make noises and make up silly words. He does this for fun and finds it very entertaining and this is why he gets in trouble at school. He is very intelligent and gets bored easily so when he gets bored he entertains himself (and his classmates) with silly noises etc. And of course this can't be allowed, the class would
never get through their work. His teacher is working with him and has seen improvement. She has even made a point of coming to tell me when he has done really well.

This is all great except the extra effort in school seems to cause his tics at home to be almost constant. And I feel horrible and guilty that they drive me crazy! What do I do?! I know that bringing the tics to his attention or asking him to stop just makes it worse. I am hoping I can get some suggestions on what to do with him to let off the stress and energy or if there is no way to reduce them, advice on how to cope.

I tried to talk to my husband who is typically at work all day and he says he doesn't get why they bother me. Feeling so alone and ashamed of myself.
deleted_user
deleted_user
I have read your post a few times and I bet more than a 100 others have too and we just dont know what to tell you. We all go thru the same stuff on a daily basis and hate it as much as you. There does not seem to be an answer. I have asked my 16 yr old grandson what parents can do to help and he says nothing, just dont yell about the annoyance. And if we think it bothers us, it bothers them way more. And if we think they are not aware they are making these noises or faces, believe it, they know. I sometime feel he just does them so much he is unaware of it anymore, wrong . I keep hoping and praying he will 'outgrow ' them but not seeing that any time soon. We have been thru the trouble at school and still , everyday, I wait for a call saying he distupted the class with something he did or said. He said being the class clown helps, cause then the other kids think he is cool instead of weird.
God help us.... we are in this together.
kgore
kgore
I think mgibbs sums is up nicely, our kids are governed by their neurology and they hate it more than we do. All we can do is support and love them. Learn as much as we can about ts and the comorbid conditions that often go along with it. Your son sounds like he has a measure of adhd along with his tics and this makes everything more difficult. You shouldn't feel so guilty about having a hard time excepting this or being driven a little crazy. You are human after all and we as parents all probably feel like that from time to time. Try and get as much support as you can. Contact your local tourettes society and keep reaching out here on daily strength.

mgibbs: is it your grandson?? Well he seems a lot like my son by the way you describe him. My son is 18 and a half now with no signs of remission of tics. We are now contemplating deep brain stimulation here in Australia with one of the best doctors in the country.
deleted_user
deleted_user
kgore, i have seen alot on the brain stimulation. It sure looks scarey but what I have seen has been amazing results. Shane is my grandson although a few times he has been refered to as my son so I just left it that way. He is 16 yrs old and in first year of highschool. When we first got the dx on him, the dr said he could grow out of it in early teens . Didnt happen and it just seems to get worse as time goes on. Did your son get thru school , or still in?

peka7800, We are all here for each other...
deleted_user
deleted_user
My daughter who is 7 started with vocal noises, humming and such. She now has a 'finger blowing' tic which is driving me mad. I totally understand your situation Peka7800, you are not alone in feeling that lack of sympathy. We are in early stages with it but I am already stressing. We have had medical advice and been told it will go away, but not so sure. Dont really know what to do next.

My hubby has also said to just ignore it, but when he only sees her for 2 hours a day its a bit different!
deleted_user
deleted_user
hi my son matt is 7 yrs old and he just started the tick motion in may. he has also did the eye blinking and noise in the throat. dr have offered medications. sometimes i cry alone because it gets hard just watching him..we are in this together.
deleted_user
deleted_user
Don't be ashamed. My son's tics drive me insane. I have my own sensitivities to repetitive sounds, so when he is presenting a major vocal tic I almost can't stand to be around him. At one point, he was banging his head against the back of the couch... I could hear it AND feel it. I hate myself for asking if there is any way he can stop, when I know in my heart he can't. The mantra that works best for me is to remind myself that, as difficult as it is to be his mom, it's 100 times more difficult to be HIM. Then my compassion takes over. And fortunately tics wax and wane and replace themselves with something new. Just when I thought I couldn't handle his current tics anymore, they changed. I even feel guilty for that, because his new tics may not annoy me but they are still a misery for him. It's an ongoing struggle and it never goes away. That sounds pessimistic, but if you're a loving parent you never stop worrying about your child and sympathizing with them. Just hang in there!!! My son is a source of great joy. When I'm freaking out, I call a friend and vent and then everything is okay again. I have great friends who have taken the time to know me AND my son... they appreciate both of us. Surround yourself with compassionate people you can talk to. You'll find that, the more support you receive, the less you need it :)
jacob337767joel
jacob337767joel
I doubt if the disturbance in class is something he can be held responsible for. I do the same thing and it is the TS that causes it. Let up!
deleted_user
deleted_user
Thank you all for your support. It has taken me this long just to look at the responses. My son has now been diagnosed with ADHD as well and after significant increases in his difficulty at school and great efforts by the school staff to find ways of encouraging and supporting him that all ended with his return to the same patterns of behavior, we have chosen to start medication. He is still having some difficult days, but is caught up on his work and able to move forward. Thank you again! I will continue to seek and give support.
deleted_user
deleted_user
As a 20 year old who has had a tic disorder since I was an infant, I understand your frustration but it also scares the hell out of me.

My mother used to become furious with me and actually punish me over my tics (which I had and continue to have absolutely no control over). I can't tell you how sad this made me as a child and how sad it makes me still to reflect upon it.

When I was young it was impossible for me to explain my tics to my mom because I didn't know what they were or why they kept happening. So she concluded that I was doing them on purpose to get attention! As a child, that accusation made me feel more isolated than I can explain.

When I was older and after a few visits to a tic specialist, my mom became more accepting of my tic disorder and has apologized since for ever making me feel badly as a child for something I COULDN'T CONTROL.

Please... I know being around someone with a tic disorder can be like nails on a chalkboard (I get tired of my own tics more than anyone) but your son needs YOU to be more patient with him than anyone else. You'll get through this!
jpow
jpow
My daughter is 5yo she used to be he light of my life and I couldn't imagine being anything other than her mom. I enjoyed spending all of my time with her. She was my little best friend.
Now her tics annoy me so much I can't even stand reading a book to her as she's doing these deep hard exhaling breaths that end in a loud barking noise , in my face where I can hear and feel these puffs of air on my face.
I feel guilty like it's my fault because I can't help her and I've tried everything. Supplements, diet changes, taken her to a neurologist, Clonidine, and now cognitive behavioral therapy. I love her so much but I get so depressed when she's home on the weekends and I'm hearing this sound 10x a minute
jpow
jpow
I just pray that god gives me the patience and compassion that I need to have in order to love her properly and not judge her, I want her to feel comfortable and liked and loved especially at home. I wish these would just go away! :-(
jpow
jpow
:_(
SparrowVerum
SparrowVerum
The fact that you feel bad, the fact that you are reaching out for support, means that you truly love your son and are doing everything you can to support him. I was raised by a dad and stepmother who didn't understand or even accept the fact that I had Tourette's, regardless of the fact that I was medically diagnosed at age 8. As a result, I have PTSD from the abuse I suffered, punished over and over again for something I was doing 'for attention'. They didn't accept that I couldn't control it. And they've never apologized. I know how hard it is. I know how overwhelming and annoying it can be. And it's not going to go away. There are things that you can do to reduce the severity of the tics, like medication and therapy and stress management, identifying triggers and avoiding them. But just know that the only thing you should never, ever, ever do is punish your child for their tics. It would literally be like punishing them for breathing. While we can hold our breath for a while, eventually we are going to lose control, and end up gasping for air desperately. The same is true about our tics. Kept on breathing. You can do this.
Posts You May Be Interested In
  • deleted_user

    Food Allergy?

    Posted by: deleted_user
    Last Reply: Iafaforallergy
    7
    My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...