Here is a post from a mother who wishes to remain anonymous. She could really use help, though, so please consider commenting with a reply if you are reading this. Thank you!
I’ve asked questions before, and it always helps to get input from others who have been there, done that. My son is 13 and has Tourette’s. He has coprolalia as well. Unfortunately, when he gets very excited — either very happy or very mad — the words fly.
He has certain phrases that he says over and over again. It’s really really hard to listen to on a daily basis, and much of it I have tuned out. He is homeschooled, but the problem is with friends. He only has one friend in the neighborhood — most of the other friends have gone by the wayside over the years.
My son is much younger emotionally, and his best friend is only 8 years old. Today his mom told me that he can no longer have his son play with mine because of the horrifying thing my son said within earshot of her daughter (who is very sensitive and doesn’t get it).
The mom “gets it,” but she is afraid that her ex-husband will hear about what was said (from the daughter) and take her back to court for custody because she is letting her children be around someone who is saying things that could be seen as threatening.
I don’t want to say exactly what was said — it wasn’t good — but it’s a phrase that is in my son’s repertoire. We have tried word substitution, but it hasn’t worked. I have tried explaining why it isn’t a good idea to say certain phrases, to no avail. Has anyone tried any form of behavior modification that has worked for the worst of the language?
I guess I’m worried as he is getting older that what if someone, such as a police officer, hears him say something that they consider threatening … even though he has Tourette’s, can they arrest him? What happens in those cases? He is currently unmedicated as nothing has worked so far to make the tics any better.
Thanks for any advice
I’m 36 and have TS. I also have said bad things from time to time. For me it is taboo words that will pop out. As saying “junkie” when I was 13. My dad was furious because he thought I called him junkie. That word became “electric” and I had to say it, I knew I’d get beaten but I couldn’t stop it.
I have 15 mg Abilify now and my tics have almost vanished completely and I can concentrate and don’t act on impulses. Have you tried Abilify?
I’ve read in some places that coprolalia is a component of Tourettes that waxes and wanes based on age and that it’s most prevalent during the puberty years. Is that true?
For us that has been true–he didn’t have this earlier in his life. It’s the worst now that he’s 13.
Your son has a neurological disorder. I often compare it to being in a wheel chair or having cerebral palsy. If he had C.P. people would understand if he inadvertently made a rude gsture with his hands or made a “rude face” due to his lack of muscular control. He just says words, that’s all. When I introduced my 5 year old son to my girl friend’s son who has full-blown TS+, I told him he was going to hear a whole bunch of bad words, and then I taught him about the disorder. As result, my 5 year old learned EVERY word that is taboo in the English language. As a result, he learned what was forbidden. If he tried to use one of those words, he received consequences. In the end, he never used the words because he was taught properly by his parent. That’s why it’s called parenting. As a vice principal, I usually discipline at least one child every school year for using a bad word that they heard in the school yard. They don’t have Tourette Syndrome and have control over their behavior. They get in trouble for this infraction. That has never happened to my 5 year old, and likely never will, thanks to his exposure to my girlfriend’s son. My 5 year old learns from my older son and we all learn from each other. BTW that foul-mouthed kid is now my step-son, and we (as a family) couldn’t be happier. Teach and practice self advocacy with your child constantly. With some simple information some will “get it” and find out who your son really is as a person. Others won’t and you can’t control that. But self advocacy skills are so important. As an adult with TS who has coprolalia myself, when pulled over for a police spot check or something I immediately say, “I have Tourette Syndrome”. Usually that is all I need to say because they know what that means but I am always happy to share more if needed. Please visit our website for more information on coprolalia. http://www.neurologicallygifted.com. There is information about self advocacy and more that we have learned from loving my (now) 11 year old stepson.
Ken, thank you for posting your articles here from your website. They have proven very helpful, as my daughter has coprolalia, and believe me, she feels like a “freak.” She’s 12.
I sure hope no one is calling her a freak. That would be just wrong and should be considered bullying.
What an awesome story about your step-son! How lucky he is to have found a stepdad like you! And what you say makes perfect sense about his interaction with typical kids. Not everyone sees things that way, and it’s a daily struggle to bring everyone on board. I do it–i am slowly teaching my son to do it. At times he’s ok, other times he’s down on himself. And how to explain to him that he’s not going to be seeing his best friend -because of his disability…that’s a tough one. Thank you for the website link!
Your welcome. You can connect with our Facebook page as well at Neurologically Gifted: Understanding Challenges in Neurological Disorder. Good luck to you.
Ken Shyminsky
First I want to say what a loving mom you are, and how lucky your son is to have you. The fact that you can give him the freedom to tic, and mostly allow yourself to tune it out is a gift for him. I know, though, how hard it is to live with the constant words, especially ones that have such a negative connotation. Even though we get it, as parents, that they don’t have control over the words, it is still very, very hard to be cursed at, or called names.
I am so so sorry to hear about the way that you are being treated. Our daughter (also homeschooled) had very strong corpolalia for about 1.5 years. Like your experience, it was non-stop and (most of the time) we tuned it out at home. Sometimes my ears were so full of the noise and the curses that I definitely did not handle it so well, but mostly I tried to give her space and time to tic without judgement.
Out of the home was different – many stares and sometimes comments. We were lucky that her friends continued to support her, and the families of those friends took it all in stride. We were also lucky – once we decided to try medication – that guanfacine took the edge off her most intrusive, and verbally difficult, tics. My daughter often remarked that it did not help much with the tics that bothered her the most (physically), but she was relieved to have less social pressure from her tics. I hope that you have a continued dialogue with your doctor to try to come up with something that can, at least, diminish the tics.
I am wondering if your friend’s reaction to your son had more to do with her own feelings (possibly unconscious, but definitely playing a role in her decision) than her worries about her husband’s reaction. I’m guessing it would be hard to talk to her about it though! It is incredibly hard to feel like you are not supported by your friends, my heart goes out to you.
I asked my daughter what she thinks might be of help. One thing she mentioned was support groups like the social skills group at Rutgers, or the monthly support groups that happen around the state. Meeting other kids with TS at events like the Mendham walk or Camp Bernie was really great for her too.
With your love and support, you and your son will find a way. I wish you much love and healing on your journey. If you are going to the walk next week, I would love to meet you.
Thank you for your reply! I hadn’t thought about the reaction having to do with her own feelings….perhaps you are correct. It makes me sad since I thought she was one who “got it”, as she’s a therapist. My son won’t do too many groups-i’ve asked him but he doesn’t do well sitting down. He did attend the Camp Bernie though, and is looking forward to that again next year. The walk is a little far for me (2 hours), i don’t think he would be able to do that car ride. But we may decide at the last minute, it would be great to be around everyone! thanks!
Leslie K, do you think homeschooling makes a huge difference in the life of maturation process of a kid with TS or another disorder like it? I hear more and more of parents trying this. Would love to hear your perspective.
I think homeschooling is a fantastic option for some kids/families. It certainly helped my very anxious little girls grow in their own time, to tic freely, and become the much more confident girls they are today. We found the homeschooling world to have many activities and opportunities. We made many good friends and have learned a lot. After my initial worries I realized what a great world homeschooling is. I’ve often told people that there’s public, private and home – all good and bad in their own ways. Of course it all depends on time, money, personality and willingness- both the kids and the parents.
Right now I have one child at home and one in school. My older daughter loves the freedom of homeschooling. She has time for doing her studies, to be a youth advocate for njcts, and do many many more activities. My younger daughter homeschooling up to the middle of 4th grade and then asked to go to school. She’s so happy there. So, both have many activities and teachers in their lives. They also both have some not so good days! Ultimately no one schooling option is best – they all have pros and cons. But, homeschooling has been very good to us!
I agree, homeschooling is a fabulous option — especially for kids who already are battling personal issues. They don’t need them compounded in an already crueling, uncaring place. Yes, they need to learn about what it’s like to live and function in the real world, but force-feeding that at a young, vulnerable age is not a good option, in my opinion. So kudos to all home schoolers.
You are in my shoes mama! 13 yr old son almost getting kicked out of his special needs school for coprolalia & copropraxia. While atypical neuroleptics do seen to help us, we noticed that a smaller class ratio makes a huge difference. He was moved into a smaller section of the special school with 5 per class & paired with a mentor/advisor. Even a ratio of 1-2 per class, a shorter school day, less homework, the few people around him who understand & not keep telling him to stop it can make a big difference. mine has no neighborhood friends either. But he has 2-3 friends who are true friends. This should get better in a year or so. Please keep your chin up and his too!!!
Thank you so much for your kind response! It’s comforting to know I am not alone in this, and I so hope it gets better!
Wouldn’t it be illegal for him to be kicked out for what’s clinically something he can’t control? You might want to look into legal options.