Son with Tourette Syndrome

Hi S.-
I am the mother of a 14 year boy who has Tourette's. He was dx with Tourette's in the first grade. It has been a bumpy ride for him and us. It is heartbreaking to watch as a mother. There have been many times where I have cried alone, never in front of him. We have been lucky as his case is mild to moderate(depending on the season). We have not done meds. I do try to watch his diet, NO caffeine and little sugar. I also try to limit the amount of excitement. Sound difficult but it really is not. My son has been in three different grade schools. This really had nothing to do w/tourette's. I am a firm believer in finding the right spot for your child. If your son needs a better spot go with your gut and move him. I can say from my experience, there is a light at the end of the tourette's tunnel. My son is doing wonderful!! He is in his freshman year of HS. He plays hockey, baseball, is in all honor classes and has a real positive attitude. Those who tease him, he realizes how ignorant they are about the disorder and those people are not worth his time. Good luck with your journey and you are not alone. M. from Chicago

1 mom found this helpful

Hi S.,

As a special needs consultant who works with parents who have children in public & private schools, a special education teacher and a Mom of two girls in Montessori....we could probably talk for hours.

However, here's a few bits of information to get started.

1. You cannot look at a typical public school classroom and decide if it is right or your son. At this point your son would most likely either have an aide in the classroom or be attending a resource room for some subject areas. Therapy in various areas would also be provided.

2. Has your son had a neuropsych to find out what his learning skill level and processes are? Seems to be a lot of guessing by professionals of what is going on and you don't want your son to lose progress in school. This could also be taken care of for starters through a special education evaluation by your school district.

3. Your school district has not been thorough or "followed the rules" from what I can tell in your email. Again, I highly suggest you start a special education evaluation. The request needs to be in writing, if they deny your request they have to do that in writing also.

4. Based on what type of program the public school offers, you could then start comparing it to other private options. Montessori has many pros/cons for children with special needs, but until you know what other options you are comparing it to, you really can't make an informed decision.

5. Sounds as if you need to find a social worker that works not only on self-awareness & confidence, but also on self-advocacy skills. These three areas tackled by a professional can make a world of difference in addition to a change in education program.

Best Wishes,
C.

1 mom found this helpful

Hi S.,

I work with a family who is impacted by Tourette's. They've done more research than I have, but seem to have found some really excellent resources. First of all, there's the Tourette Syndrome Association of Illinois (tsa-illinois.org). They're led by Sandy Shamash- a great resource and go-to for inservices and helping to better understand Tourette's. I believe there are support groups for both parents and children with Tourette's. They're out of Libertyville/McHenry. There's also Dr. Robert Kohn out of McHenry (www.drrobertkohn.com). He appears to be one of the rare doctors in the area who specializes in Tourette's.

I hope this information is helpful to you. Good luck to you and your family!

Hi S.-

Just wanted to give you some encouragement. My husband has Tourette's, and is very successful in his field. He grew up in Michigan, and his parents transferred him to a progressive private school for the middle school years, but he did well, and went back to public for high school. I know this is hard; my husband went through a lot growing up (in the 70's) and we even looked into genetic testing before having our own children, but he just had to work through it, and realize that children could be born with much worse issues. Our children have a 50% chance of having it, each, but right now they're still young, so we don't know. I know that TSA has people willing to come out to schools and educate the staff and students as well, and may be able to point you to some support groups. I think that YMCA's Camp Duncan does a camp in the summer for kids/people with Tourette's. You may want to check into that, to help your son feel less alone. It must be hard when this hits out of the blue; at least I've had advanced warning. I wish you and your son luck!

My experience is with various dx other than TS. Son is now in intermediate level of public school. We have often looked at private or montessori. However, we stuck with public. We did research on what services the school could and was required by law to offer based on our evaluations. Make sure you bring the school all your evaluations and ask any doctors and therapists to write letters on what accomodations need to be made for your child--including how to help your child cope with bullying and help build his self-esteem.

Know the workings of an IEP inside and out. Keep pushing the school in a positive way and make sure you are willing to work with them--not fight with them.

Hi S.,
I used to be a teacher's associate for a middle school in the Special Ed dept. I started out as a one on one aide for a six grade male with Tourette's, OCD and possible ADD. It was just for his transition to middle school so it only lasted for one year. Then I was transfered to the other middle school and assigned to the 6th grade Cross Category classroom to which a few years later had the younger brother for one year.

I was wondering if you contacted the schools and talk with the Social Workers, maybe they can network for you and give your contact information to other parents of children with TS and let them contact you if they wanted to. I know the schools have to be confidential with information and can't give you any names etc. Just a thought.

Maybe you can start your own meetup group. Meetup.com

Here are some links to support groups I have found along the way. Blessings and hugs to you and your children and I hope you find what you are looking for.

Here are a few links I hope they help.

http://www.tsa-usa.org/
http://health.groups.yahoo.com/group/TSparents/
http://health.groups.yahoo.com/group/Tourette_Syndrome_Su...
http://www.mdjunction.com/tourette-syndrome
http://dailystrength.org/c/Tourette-Syndrome-Tic-Disorder...

Tourette Syndrome Association Inc of Illinois
5102 Oakton Street
Skokie IL 60077
###-###-####

Details: Tourette Syndrome Association Inc of Illinois is listed under Social and Human Services. You may contact Tourette Syndrome Association Inc of Illinois at ###-###-####.

hugs n' prayers, gratitude and peace,
linda

Have you explored neuro bio-feedback? The basic theory is that like bio-feedback for controlling blood pressure, neuro bio-feedback can control the electrical activity of the brain. It is quite successful for treating ADHD and other brain disorders. It's safe and simple, but expensive. You insurance might cover it. I suggest 'Googling' neuro bio-feedback to learn more. A neurologist at Health First in Schaumberg is a local provider. Good Luck!

P.

i have no experience with tourrettes but my prayers are with you and your family. i know it must be hard to see your son struggle through things that people take for granted everyday. my son was in montessori school for since he was 2 and he is now 5. we love it and it works wonders for children who have to be given more attention. they work with the way your child learns and this makes them progress faster and easier. again good luck and im sure you will find something that works for your son.

Hi S.~
I don't have a child with Tourettes but I do have experience with Montessori schooling. I love the school and am sending my three year old to preschool there right now. My suggestion would be to visit a Montessori school and share your concerns about your child with the director. Use her professional opinion and your intuition to see if it is a good fit. Not all Montessori schools are the same, so visit a few. My son's current school is very regimented as far as the rules go, but the children are free to chose their work. They are very big into respect for each other and always shake my son's hand and look him in the eyes when he leaves the school. The low self esteem is hard to watch as a parent and probably comes from his school. If he went public school it may help because you could get him an IEP there and they would pair him up with other children that are more like him. This helps the child because they learn from the other children what their behaviors are like. My oldest son has Asperger's syndrome and being with the kids more like him has helped a great deal. His confidence has boosted in the year that he has had an IEP and diagnosed. Sometimes the problem is worse at school than you think because these children lack alot of the skills it takes to tell an adult what is going on. My son went undiagnosed for many years and things were not always good at home because we didn't understand what was going on. Things have improved a great deal since then and I am glad you have a diagnosis at this age. I think things will get better for you soon.

Dear S.,

I do not have any info on tourettes and do not know what you are going through, but I went to college with a male who did have tourettes syndrome and he has accomplished so much! I actually just found out that they made a Hallmark Hall of Fame movie about him. It debuts on CBS on Sunday, December 7. You might want to check it out I am sure it is going to be inspiring!

I will keep your son and your family in my prayers!

J.

I raised a son wih tourettes, he is now 20 and has many friends and functions well in social groups. very out-going and many great friends! I tried the medications, but had the same experience, many mre ticks!! He was in the public school system and experienced many trials..His teacher once told him to sit on his hands as his motor ticks were disturbing other students. He was active in soccer, but in the early years he was the brunt of much bullying. It was heart breaking. I went to the school and talked with the teacher, then I went to his classroom and talked with the class about tourettes (he was in third grade) This helped with the bllying! I also joined an internet support group and got him involved in this also. I researched a great deal and found a diet plan that helped! High amounts of green veggies, no red dyes (kool-aid and sweet things), high protien, low salt, and no caffiene and soda. Very low sugar. It was hard to stick with it so I made it a family venture. I included him in all the information I found and let him know it was "okay to be different" By high school his classmates were referring to him as "tick boy" in a fond way. OT was helpful as well as self-esteem counseling and talking with him openly about tourettes. He went to a wonderful specialist at Northestern. My best advice...stick with whatever works and make it a family venture to educate others. Have the whole family involved with his treatment plan and be open. It was a rough road but he is a great kid! He tried college, but found he couldnt concentrate enough to do well, he is now very active in mission work and relief efforts and is joining the americore. Stick with it and good luck in your venture.

I myself do not have a child with Tourette's syndrome, but a boy who my son was friends with did. There were a few incidents where he did rather surprising things and no one knew why. Then of course it was discovered was what was going on. Diet, medication, etc. helped and this boy has now received several scholarships to college and is quite talented musically. Do not give up. I wish I could give you the mom's information but out of respect for her I can't as she was private about this painful journey. I will tell you I have looked on line and there are support groups for Tourette's syndrome all over Illinois at least.And this boy went all through the public school system I do not know anything about Montessori school. Even if it is hard your child has a uniqueness that will probably prove to be a gift.
Good luck. S.

S.

You may already been doing this so its Just a suggestion would be to look into adding natural nutritional supplements not store bought like Flintstone Vitamins. Also review your son's diet. Have you eliminated candy and soda juices? Also Milk has a lot of hormones in it which can effect your body. Rice Milk works great. Changing what he eats can help alot! There are some really great nutrition books out on the market to really help you understand the power of nutrition and how it can change your conditions. I have a friend who has MS and was shaking, could hardly speak or walk now after getting in natural nutrition she stopped shaking can talk very well again and she has started walking better by herself. I have a young 18 with bio polar and she focus has come back so much that they are slowing reducing her meds. Nutrition can really help. LOts of uncooked Vegetables (especially green)are the source of life.

I will pray for you and your son. Let me know if I can help in any way.

Blessings,

S.,

My heart is with you. I do not have a child with Tourettes. We have a friend who has a daughter with it. She has drastically changed their diet and lifestyle following the Feingold diet and has also met with top doctors out of Rush hospital that specialize in Tourettes. Their daughter is doing great and the tics have diminished dramatically. She also attends a Christian Montessori school.
Take care.