Our journey with Tourette Syndrome ….
Hi guys, I hope you are having a great weekend. I wanted to talk with you today about something that has been on my heart for a while and this month was the perfect opportunity. It’s National Tourette Syndrome awareness.
This is something that is near and dear to my heart,I have a child at home with Tourette’s. It’s something I haven’t brought up before because it’s not my story to tell. But I asked her if it would be ok if I shared our story with you and she said it was ok.
Many people are confused as to what Tourette’s is. The general misconception is that people with Tourette’s swear loudly and spontaneously. It’s the biggest thing people make fun of and say about it. I’ve walked past people and they’ve saida swear word and said in a joking way “Ooops! Sorry that was my Tourette’s!” While there are a small amount of people who do that, most people with Tourette’s don’t do that at all.
Tourette’s is characterized by uncontrolled movements and noises called tics. They can be anything from repetitive eye blinking, constant throat clearing to large motor movements and loud noises. It all depends on the severity. They can also be accompanied by ADHD,OCD,anxiety and other similar conditions as they occur in the same area of the brain.
We realized something was different when she was about 3 or 4. She was making a noise and we kept asking her “Why are you doing that?” She had no clue she was even making a noise. From there it would change into facial expressions and other noises. I kept telling the Doctor about them and they kept saying it was transient tic disorder and it would pass in a very causal way, lots of kids get it… etc.
The thing is it never passed, it instead became worse, with louder noises and more exaggerated movements. I remember sitting by her bed and watching her as she slept,because she was so small, and I had read kid’s with Tourette’s tic in their sleep and I would watch her for a tic to convince myself it wasn’t it. As her mother, I didn’t want this for her and it was breaking my heart.
But as each day passed and things would wax and wane and new noises would come out or new physical tics, I slowly came to the realization that it was more than tic disorder. An incident during first grade story time finally made me realize we needed to pursue that option even though I didn’t want to believe it.Her teacher called me to tell me that she was yelling a noise out during story time and they had to call the nurse in because it was so unlike her. We finally had her evaluated for all of the other things it could be such as a seizure disorder, brain tumor,sleep disorder etc, and finally when she was 6 she had the official diagnosis of Tourette’s Syndrome.
At first as the reality set in I was devastated.I remember walking around in a daze feeling like I was floating.I kept asking myself,How was this our life? How could this happen to our child? As I slowly returned to reality and did more research, I started to get perspective and set my heart on the fact that this”thing” would not kill her or make her sick. She would live a long healthy life and get a job and have a family and all of the other normal things.She had a syndrome that was more damaging to her self-esteem than anything and it was our job to hit it head on and do what we could with it to keep her secure and loved.
The hardest part of Tourette’s there are no medications specifically for it. After the Neurologist explained to me that they typically use medications that have other purposes for Tourette’s, I really didn’t want my 7 year-old on high blood pressure medicine or anti-seizure medicine if she didn’t have to be, so I started investigating other ways to control her tics.
We started her in aggressive Occupational and regular therapy and also an all organic, food-dye free,preservative-free diet.It has reduced her tics from severe-moderate to moderate-mild,which doesn’t sound like a lot, but when you live with it, it’s a lot. It’s the difference between not being able to function during daily tasks to functioning on an almost normal level.
The doctor’s are shocked she does not have ADHD, which normally goes hand in hand,but I believe it’s due to her diet.She does have slight OCD and sensory integration disorder, but the therapy has done wonders with those. We had also tried a gluten-free diet which didn’t do anything, but I had noticed when she was eating popcorn or corn chips her tics would spike about 10 minutes, and be horrendous for about 2 days after. We tried various food challenges with and without corn and we finally found that was a huge culprit! Which flipping corn is in everything! It goes under names such as Xanthan gum,Dextrose,Dextrin,corn Syrup, corn sugar, corn starch, MSG, and modified food starch.It’s also hidden in a lot of foods.She also can’t tolerate Annatto which is a natural coloring in a lot of foods such as cheese crackers.So I cook a lot, and we constantly monitor her diet. Luckily she’s a good label reader, but occasionally something sneaks in and we can tell the minute it does.
The hardest thing about Tourette’s is the emotional part.I know she feels different and she asks why she has it. I don’t have an answer. We kept telling her it’s a part of who she is, but it’s not who she is. We all have things that make use feel different, hers is just more obvious.The biggest thing we do is try to keep her self-esteem up and teach her to advocate for herself. I want her to hit it head on. I want her to speak out. I am so proud of her.I think she is amazing and brave.She’s done several talks at school on her condition to her classmates.We have also been so blessed to have amazing teachers and kids in our school district who are very open and accept her or who she is. And she has amazing friends who love her for who she is.
I know it’s hard for her to be in public in a quiet place sometimes because she will get stares and looks and feel embarrassed. I stare people down,I will also tell them directly why because I am not embarrassed. They need to know.Sometimes it’s hard at home because when she gets into a period where her tics flare, it can be very wearing. Some days aren’t very quiet and when she goes through a time of transition like the end of the school year or something exciting or nerve-wracking is coming up her tics can flare unbelievably and make it hard for her to sleep. We have not gone the traditional medication route yet, but if she needs it, we will definitely consider it, but it will effect her body so I want her to be able to make the decision with us.
Many people have asked us if she will grow out of it. Maybe? I don’t know? It all depends on the person and their bodies.There are some experimental treatments, but none of them are a “sure thing” yet. We’ve even done a university study to help them understand it better. No matter what, I really just want her to be proud of who she is and not be ashamed. I am so proud of her. I met with one mom who’s daughter was diagnosed after ours and she was looking for support, but I had a very hard time talking with her because they decided they were going to call it “Motor neurological disorder” and gloss over it with their daughter. They didn’t want to “label” her or give her a “stigma”. I just don’t agree with that. We have been very open and honest since the beginning. While I am not a huge fan of labels, sometimes, they serve a purpose and are necessary. Labels can be helpful. They can help you get the help and resources you need in school.They can bring a good truth to a situation. Through her “label”, my child has excelled. We have met the difficulties head on. This life is not an easy one. We all have challenges. Pushing them aside and glossing them over doesn’t solve them, but once you name something and deal with it, it gives you the power.
There are days that are very hard and they downright suck. When she has weeks where her tics flare,I know it’s hard for her at school and for her concentration and it spill’s over into home.
If you want to get a feeling of what having Tourette’s is like, pick 3 pages of a book to read and have someone else randomly clap.When they clap you have to stop reading, look up and the ceiling and then start at the place you left off until they clap again.She did this with her class and it think it opened a few eyes.
I know as she grow and relationships become more complicated, I know it will be even harder.But I also try to be realistic with her so she can understand that other people have worse things. We are still blessed and God is with her no matter what.
Tourette’s is just a normal thing in our home now. Enough that my 3 kids will fight each other for the award of who has the worst condition.”So, you don’t have Tourette’s!” … “Oh you think it’s so bad you have Tourette’s at least you don’t have Asthma like me!”..”Well at least you aren’t allergic to red food dye!”..”So, at least your not the shortest in your class!”… Way to put it in perspective kids. Not quite what I was going for with the whole “bigger view” thing. Nothing like a sister to bring it to a while new level and keep you from feeling sorry for yourself.
If you want more information about Tourette’s Syndrome, you can visit the National Tourette’s Syndrome Association page here.
Thank you so much for sharing this, Jen. I have a special needs child at home and I cried reading your post because I have been through so many of the things you have been through. The heartbreak, the misunderstandings from others, the journey as a whole…. Our first OT saved our lives. We also found that a special diet (in our case grain- and dairy-free with no artificial colors, preservatives or refined sugar) made a huge difference, but it’s a ton of work. Even with those things in place, we still have good days and bad days, but I wouldn’t change a thing. I have grown so much as a person to be the steward for this special creature who lives with me, and I can tell you feel similarly blessed!
Much love,
~Angela~
Thanks to your daughter for letting you share her story with us. Honesty and education are the best ways to help people understand the challenges we all have. I’m very proud of your daughter too!
Thank you to you — and your daughter – for sharing this very personal and important story. She is a very courageous young lady and I truly admire her strength. I agree that educating can be key in term so helping others better understand what Tourettes is and how it works – and that your daughter is equally as smart and beautiful and capable as every other child in that class. In fact, I’d say she’s even more so for her maturity and taking responsibility at such a young age to take control of her life!
She and you are in my inspiration!
🙂 Linda
Hi Jen,
Maybe your little girl will become the scientist or physician who discovers the answer to this condition. Who knows what she will contribute to making the world a better place? She is already making a difference in her life, others are learning empathy and to look within to see the beauty of each unique soul. I predict, with you as her mom, great things to come.
-Ginene
Thank you and your daughter for sharing. My dear friend, Kathy’s little boy was your daughter’s age when he was diagnosed. It was over the Christmas holidays 28 years ago. I noticed during the season as he was singing he had classic tics. It was a hard call but I called her and told her my observations. She listened and I was able to talk to a dear friend who’s husband saw them and diagnosed him. He is now married and has a little boy. Tyler lives overseas with his wife and son and they are expecting another little one. I am so proud of him and his family. Thank you again for educating people that these beautiful people can have wonderful and fulfilling lives. Di
Thank you for sharing your story. My son has Tourette’s, OCD, ADD, and had therapy for sensory integration. I read once that the symptoms of Tourette’s are most noticable around eleven years of age and may decline after that. That has been true for him (he is 23 now). I wish I had looked into food allergies as you have. We really just didn’t make a big deal about his tics. They are just a part of him. Thank goodness he has always had wonderful friends too.
I think your daughter is amazing and brave too 🙂 Thanks so much for sharing your family’s story!
Jen, I’m so pleased that you shared this with us. I used to be a teacher and one of my students had Tourette’s so I know a little bit about what your daughter has. I love how she has made presentations at school about it and has helped to educate her fellow students. You are such a loving mother and it sounds like you are handling all of this with such grace. As you mentioned, we ALL have one thing or another that we have to live with so it is not like your daughter is alone in all of this. Keep up the good work and with God, a loving family and good friends she will do just fine.
xo
jeanne
My husband also has Tourette’s Syndrome, OCD, ADHD, anxiety and depression so your story really hit close to home. You are a wonderful mother and being so supportive of her will make all the difference in the world. My husband did not have such understanding parents and really struggled growing up Tourettes. Thanks to you and your amazing daughter for sharing your story and bringing awareness to this Syndrone.
Thank you Jen for bringing Tourette’s out into the light. I forwarded this to my daughter. Her 16 yr old son, my grandson also has Tourettes and it’s amazing how closely your experiences match. The initial shock, denial and mourning turning into acceptance which leads to understanding, being educated and hopeful. I agree it needs to be met headon, the truth is always the best option. May God bless you, your daughter and your dear family for being a force for good in this world.
No doubt, she’s a brave girl…and she has a brave mama! Thanks for sharing!
Thank you Jen for sharing your story–I am Special Education Teacher and I have a few student with Tourette’s in my classes. You, your daughter and your family sound like a great family who are filled with love, patience, hope, and fun and that’s all that matters. Have a great week!
Thank you for this Jen. The truth is that we all have such an ideal of what life will be like for our kids and it is often different. I was a mild special education teacher in my career and often helped kids with Tourette’s within the regular classroom but they usually did have OCD or ADHD that prevented them from being successful in school. You are right that labels are helpful because they help us know how to deal with things and get the services that a child might need.
My son has ADHD and at 20 was hit with a pretty severe case of depression that we are still trying to recover from. You just never know what life will hold. We have to love our kids as they are and try our best every single day.
Thanks to you and your daughter for sharing her story. I have many physical challenges but God is with me through my journey. He is with you and your daughter too. Jen, you are an amazing woman and inspiration to me and many others. You encourage us in so many areas of our lives not just creating a home filled with love and fun. I really look forward to your blog each day. As I have read the other comments I can see once again you are an encouragement. May God richly bless you and your fmily and help your daughter, her brothers, you and your husband to always feel His Presence and know is always with you and loving you no matter what!
Thank you! Every body has got something… and it is good to better understand this “thing”. You sound like a very caring mother. Your daughter is blessed!
Wow Jennifer, it is obvious that you are a very strong mother who loves her daughter so very much!! Thank you for sharing this so we can pray for your family and your daughter. We have friends who had a son with Tourette’s and they have managed his condition with grace, humor, and love. It sounds like you are doing the same and your daughter could not be in any better family. You are right, we in our families all deal with specific problems and obstacles but God is faithful and provides us mercy and grace to work through. Your daughter is blessed to have such wonderful parents and siblings to lean on for support. May you continue to receive divine wisdom as to what is best for your sweet girl to help her grow up to have a wonderful life and find her gifts to use for God’s glory. Blessings, Linda
This was beautifully written and very informative. I did not know much about TS and I’m grateful for the education. I hear strength and love in every word of this and I think you have a wonderful and honest perspective. Thank you so much for sharing. Since food impacts your daughter I wonder if you have heard of GAPS diet. It did wonders with my son who had a variety of health issues. It’s a way to reconstitute the gut as a kind of “do-over”
Thank you for sharing your story. I felt like I was reading about my family’s experience with my son’s diagnosis. Everyday is a challenge as you don’t know what tics and behaviours you might find. It is so hard to watch some of the challenges your child has to experience on a daily basis.
Your daughter is amazing – speaking in front of her class! I think she gets her spunk from her mom!
Kelly
Jennifer,
Not sure if you’re following the soccer games. U.S. is out now but the U.S, goalie Tim Howard has Tourettes.
Here’s a story about it.
http://www.nydailynews.com/sports/soccer/goal-oriented-u-s-keeper-howard-overcomes-tourette-syndrome-article-1.1844398
I pray that it will be inspirational and an encouragement to your daughter, you and your family.
Thank you Loretta! I will take a look, we are always up for any kind of inspiration!
I hope it was encouraging. I thought it was an amazing story. Even as you all are living out your own amazing story!
Loretta