My son is 9 years old. He has been diagnosed with tourettes syndrome. His speech was delayed at a young age, we decided to have tests done. They found nothing wrong with him. At 3 years old, he was having eye tics. I thought he was having siezures, and it scared me nearly to death. As he has grown up, he has acquired a slew of different tics along the way. Everything from eye tics, noises made with mouth/throat, "hmmming" sounds, hand and head tics/movements. It seems to get better when he is concentrated on video games/movies or computer activities. The doctors say that he will "get better" as he ages, but it only seems to get worse the older he gets. The biggest problem we seem to have is with his speech. It almost sounds like he is talking under water, muffled and slurring alot. It bothers me because he says he is teased repeatedly in school. He is seeing a counselor, specialist and school speech therapist. How do I deal with the emotional backlash from the kids at school that don't understand or avoid him when they find that he is "different"? Any other moms or dads dealing with this or gone through this? If so, please post any remedies youve done at home to help "calm" the tics?
My son was on medication for about two months. I didn't like it at all. Nor did he. He was lethargic and groggy all the time, his ambition levels went way down and motivating him off the couch or out of bed was like pulling teeth. We took him off it when we realized that the medication was not even working, and he started to develop new ticks. I have been to his IEP meetings, and they claim he has progressed in making improvement. I see some improvements in some areas, but others are not so much. He's a bright kid, learns quickly and does well in school grades wise. Its just the bullying or self confidence that Im trying to work with. The tics dont seem to bother him until they get consistent, then he starts having neck pains from the tension. I will definitely look into the programs and books you all have mentioned. Thank you for that. He was tested by an ear/nose/throat dr when he was younger and then again a short time later to rule out any abnormalities in his jaw structure or having fluid in the ears. They claimed he didnt need tubes in his ears. (Not sure how to properly respond to all your questions/comments...theres no way for me to add my own comment :( )
My grandson went to a specialist at
Childrens Hospital and was on medication - still is on meds at age 25 and the meds control the ticks. He talked late also. With the speech, has he seen an ear doc? Another grandson sounded the way deaf people sometimes sound. He had mucous and fluid in his ears. When he got tubes, his speech improved immediately and at 6, he sounds very normal.
Things from using non toxic cleaners in the home to whole food supplements can help your son and better than any medication.
If you are open minded and want to talk about it further, send me an email and we can do just that and can do it over the phone.
It is good that you have your son talking to someone. Children, and adults, can be cruel.
Many blessings.
I just wanted to tell you that the principal at my son's school has Tourettes...it hasn't stopped him in any way, obviously. Just a little encouragement.
Does he have a buddy or two? I would help him cultivate these friendships by inviting the kid(s) over so your son is in a low stress, familiar environment to bond a little better with his best buds.
Hopefully your school is big on inclusion. I know y son amazes me because he seems very, very open to all different kinds of kids and says things all the time like "just b/c so-and-so has autism, a wheelchair, etc...it doesn't mean you can't be friends with them. He's in 2nd grade ad I know it gets more "cliquey" as they get older ....
Does he do any sports/clubs/activities that help build his confidence? That might help too.
Good luck to you and your son.
I read the book, Against Medical Advice by James Patterson. It was amazing. My children don't have Tourettes, but I have a cousin that has it. I wish you luck, grace, patience and love!
See a pediatric neurologist at a major medical center. There are some medicines such as topamax that are used for tourettes.
I have been a teacher to many students with tourettes. If they are medicated other kids really can't tell - no more tics, hmming, etc. You haven't said anything either way about medication, but I'd seriously consider it. Yes, there are side effects, but, in my opinion, the side effects would have to be awfully severe to outweigh the potential social otracization of tourettes. Best of luck to you.
I agree with the first poster - find a Cognitive Behavioral Therapist. This individual should be able a) to give your son some strategies to deal with bullying etc. b) give your son some behavioral strategies to address tic behavior at school and at home and c) give you strategies to take to an IEP meeting so that your son can better manage his tics.
While it is true that many folks with Tourette's do well with medication, most also need some sort of behavioral intervention as well, particularly given that stress can exacerbate tics. Ask the therapist to train your son in progressive relaxation. Hopefully that therapist will provide you with a CD with the protocol so that you can use this technique at home.
Some folks with Tourette's are able to hold back their tics for a short period of time and then they can go to a more socially appropriate location to engage in them. So - if you tell your son that every hour, on the hour, he can tic as much as he wants, he may be able to hold them back. (It might be for a shorter period of time... just giving an example). When folks are able to do this, the tics can be intense for a bit while they "get them all out". You could build this into your son's school schedule. Usually this just works for a short period of time (like a school day or less) and kids need to be able to let it all hang out somewhere else, such as at home.
Also ask if the therapist is able to use purely behavioral techniques, such as habit reversing training - which can help reduce the tics a little.
Finally, find a support group both for you and for him. Parenting a kid with a developmental difference is highly stressful... more so than parenting a typically developing kid. Take care of yourself and stick with the folks that can support you through this, as well as your son. Putting him in a support group will be great for him because he'll learn that there are other folks like him, going through what he's going through.
Here is a site that is likely to be of help:
http://www.tsa-michigan.org/
Call the TSA - they'll know who the good therapists are and they'll be able to help you to utilize the school district's services more effectively. Usually folks are more than willing to help you for free!
My 10 year old daughter has tics. The dr says it is stress related. We just found this out. They put her on clonidine, her tics are coughing tics so it was distrupting her life. It has helped with the anxiety but I am planning on putting her in therapy to help teach her coping skills so maybe she can get off the meds. Good luck!
Could you find a school where the kids are kinder? A charter school, maybe?
I have not dealt with this and don't know anybody who has but I just read a book recently about a family dealing with Tourettes and their journey, it's sad but ends happy.... Might be something you would be interested in. It's not a remedy book, just a story, a true one though. It's called "against medical advice" I am pretty sure it's by James Patterson
My stepson has Tourettes. He's 20 now, and it is better. However, it peaks at adolescents, so it will probably get worse before it gets better. Sorry. I know my stepsons mother pulled him out of school and homeschooled him for 7th and 8th grades due to the bullying.
I don't know what the underwater speech is. I do know that usually there is more wrong than just Tourettes. My ss also has ocd, which seems to accompany it alot.
I would suggest that you go to your specialist (Neurologist, Developmental Pediatrician, or psychiatrist?) and tell them that his treatment plan is not effective enough and he needs more. They will guide you to the appropriate services that will help with the symptoms that he is still struggling with.
It is a reality that some medical issues, like Tourette, stradle the medical-educational fence. Your school is only required to make your son functional in the school-educational setting. You are responsible for Maximizing his potential, and almost 100% of children with school services will need extensive private therapy to supplement thier school program. I would guess that he needs a great deal of private speech therapy, medical intervention, and social skills classes. If his counseling is not Cognative Behaviroal therapy, look into that and see if that would be more helpful. It may just be time to ratchet up his services, or seek out some different providers.
Those issues that effect his school perfomance or behavoir should be addressed in his IEP. You should be arguing that he is not makeing progress or is regressing in some areas, and try to up his services and adjust his accomodations and modifications.
If he is being made fun of because of his disablity, then this should be addressed by the administration as disablity harrassment under the schools bullying and harrasment policy. You should get a copy of that policy, and work through the steps to stop this behaviro in other students while you find extra help for your son to be less of a target.
www.wrightslaw.com is a great site that will help you with advocacy for tourette syndrome and IDEA advocacy. Log on and check it out. There is a yellow pages for each state with providers that may be able to help you.
M.
I knew someone in college with Tourettes and he said it was worse when he was under more stress. Can his counselor help him with relaxation techniques?
