TSParentsOnline can be found in two places on the Internet — here on this blog and also on the New Jersey Center for Tourette Syndrome Facebook page. Less than 24 hours ago, DeniseF posted an entry that asked for help regarding her son, who has severe coprolalia — the condition associated with TS that causes involuntary swearing and is found in less than 15 percent of people with Tourette.
In that short time period, the posting on Facebook received more than a dozen comments — all of which could help DeniseF. We wanted to post those comments here so that readers of the blog who might not know of the NJCTS Facebook page could see them, too, and join in the conversation:
Leslie Kowalski says … “No advice, just hugs. Our older daughter has corprolalia. We have had some public events that have gone very smoothly (usually because supportive people are around us), and others that were difficult. I notice that she holds in the curses in many public situations, but the cost that she pays for that is increased motor tics — to the point that she’s jumping out of her chair., or increased sniffs, grunts, etc.”
Lisa Lagana Delia says … “Reach out to your local movie house, they might be very supportive in having a private showing at an off time. Your son is lucky to have such wonderful considerate parents. God Bless!”
Denise F says … “Thanks for the support, Leslie! Kyle wants to tell people so they won’t think he is just being weird. That really does help and, thankfully, people are always so understanding! And thanks for the great idea, Lisa! … I meant to add….I will let you know what the movie theatre says. We have a Studio Movie Grill near our neighborhood so I will give them a try!”
Christina Garcia-Determan says … “How about asking local companies if there is a time you can visit before official opening hours? I can imagine how difficult and frustrating this is for your son and your family. The only thing I can think of is perhaps a zoo, aquarium or local amusement park that may make an exception.”
Gayle Forman says … “I so hate the idea of your son being so isolated. Having said that, it is not up to your family to educate his world about coprolalia. I just keep thinking that bt keeping him away from the public, the human race never has a chance to learn to be kind, compassionate, empathic towards those people who have differences. I wish for him and for all of you a way to have him live his life, be out among people, be a part of humanity. I think of ALL the people in the world, about how many of them have something that makes them different, how hard it is for anyone who doesn’t fit whatever the mold is– and how lonely and isolated they all must be. How much courage it must take for you, your son, your family to venture out. I think the suggestions above are good ones worth investigating. But I do wish there were a way for him to be able to be amongst the world. Just wanted to share my thoughts…I have an adult son with TS. I do understand how cruel people can be. Remember to breathe and do something nice for yourselves always. My son had a very rough childhood and I think he always had that proverbial angel on his shoulder because he is doing great now! I didn’t know that THAT would be how things would evolve. We are all so very lucky. Sorry this is so long! Keep me posted if you have the time and energy to do so!”
Mindy Green says … “Big hugs I know how hard it is being in isolation….my twins don’t have coprolalia ‘yet’ but her other tics she has keeps us from going anywhere including school now and the medication they put her on keeps her awake making her tics worse! Hang in their I have noticed tics change into something new after time some gets better….there is only 1 tic or what ever it maybe that one of my daughters has had for 6 years and has gotten worse and that’s problems with certain words and sounds she can’t handle hearing seeing or writing them because she hurts her ears pushing on them screams 4 times real loud and pushes her eyes in…she can’t stand the sounds of certain voices either My voice is really aggravating to her ‘I can’t speak’ these tics cause her pain and she can’t even be near her twin sister because they make each other tic out she can’t be without me at all either….its been a heartbreaking 6 years! Praying for the cure!”
Leslie Kowalski says … “A few months ago I took my ticcer to see Wicked. We were lucky and the few seats in front of us were empty. My daughter was holding in her louder tics so she was sniffing instead, but really she was so absorbed in the show (for those who know it, she definitely identified with Elphaba’s character!) that her tics were pretty manageable. But, during the second half of the show, two people moved to the seats in front of us. They then proceeded to stare at my daughter whenever she sniffed. I was waiting for them to say something because I was going to ‘commiserate’ with them on how much it must suck to have the misfortune of STEALING a seat that happens to be in front of someone with TS. I was going to deliver it in my snarkiest voice. Oh well! That being said, I have been in public situations where people are distracting to those around them and do not have TS as an excuse! Like people who check their emails, or take calls during shows, or one memorable concert where the woman next to me sang along in full voice (and it was a small theatre, not a stadium show). Grrrrr…..”
Mindy Green says … “I was at the ER having ultrasound done and my daughter had her screaming tic and the nurse looked at my daughter and said if your gonna be in here you need to stop that….it’s obvious my daughter can’t stop it she is 10 not a 2-year-old screaming….and just the attitude voice she spoke in….I told the nurse she can’t help it and she will be in here! I’m not gonna leave my daughter in the waiting room with a bunch of strangers! The nurse didn’t like me after that…at first she was telling me how good things looked then I got mad at her for smarting off to my daughter then she started making it sound like something was wrong with my new pregnancy…what’s wrong with doctors? I had one doctor ‘nurse practitioner’ tell me that my daughter was the most manipulative little girl she has ever met and that was just spending 5 minutes in with her…she made my daughter worse and we will never go back to her…she said I should just place her in a room and ignore her that what I’m doing is not helping my daughter that I’m making her this way…if my daughter needs help with her tics I do so! Its like docs just don’t understand or care to help….teachers make it so hard to…expect it from kids but adults should be the ones helping not making it harder for a child to live without feeling they don’t belong anywhere!”
Holly Miller says … “Mindy, if those comments are all in direct response to your daughter’s tics, I do hope you have or will file complaints with whoever is in charge of these people.”
Mindy Green says … “I should but so busy with my daughters and this pregnancy that I got to stay focused on getting the right help. I just chose to not go back and have spoke up on how we were treated their!”
Leslie Kowalski says … “So sorry you and your daughter were treated that way Mindy. Good for you for speaking up. I find that kids are generally very accepting and friendly once they know about the tics. Adults often have a harder time and make assumptions.”
NOTE: By the time you have finished reading this, it’s quite possible that more comments have been posted on the NJCTS Facebook page! If you are interested in this topic, please be sure to check both the blog and the Facebook page for more comments and information!