When my daughter Emma was little we thought she was quirky. She always walked on tippy toes, she always told you exactly what she was thinking, she always talked in absolutes like I never and you always. She was pretty even tempered but had to do things in a certain order or way, shake up her routine and her day could be ruined. Emma was sick a fair amount, she had tummy troubles and aches and pains that no doctor could figure out. She missed a fair share of school but when she was there she worked hard and did well.
We had no idea what was wrong with Emma or why she was sick so much, but we knew she was honest and hated being sick so we were patient with her. We learned quickly that getting enough sleep was the most important thing we could do for her. Some days when she woke up ill I would send her back to bed to sleep. By the time she woke up again she would feel pretty good and I would send her to school for the rest of the day. As she got older it became harder and harder for her to sleep through the night or to fall asleep in the first place, so constant ideas and trying new things became the norm.
As Emma got through Elementary and Middle school it became more and more apparent that she had issues that needed to be addressed. Emma was a funny, smart, talented kid who on occasion at school had to get up and straighten things on her teachers desk, had to stand up and twirl 3 times during a test, had begun having to repeat what a teacher shouted, boy did that go over well!
We went to doctor after doctor and it felt like it should be a fairly easy diagnoses but we didn't get anywhere fast. At first they started treating her for OCD, it was semi helpful, but the older she got the more I recognized the treatment wasn't enough. Finally we were sent to a psychiatrist by our family physician because he thought maybe it would be helpful. Well the psychiatrist visits are another whole story but the greatest thing happened our first visit......he recognized Emma's symptoms immediately! He had a son with Tourettes and knew within minutes what he believed to be wrong. He sent us on to a Neurologist for exact diagnoses and meds. I didn't like this doctor either but he did diagnose with certainty and gave us a prescription.
The next week I was very unhappy. My daughter who had such a large personality and a giggle that wouldn't quit became a zombie. She fell asleep at the drop of a hat, she couldn't focus do her school work, carry on a conversation. She had no personality, no smile, no desires or needs, nothing. Going back to the doctors was not helpful, because of course they knew everything and I was a hysterical mom.
This next part sounds totally corny.....but one day I was channel surfing and I saw a commercial for the Oprah show and she was going to be doing an entire show on Tourettes, I was tuned in! She had some doctors on and some kids with Tourettes but there was one in particular whose every word I hung on. This doctor had a clinic where he specialized in Tourettes and he had written a book. I jumped online and with all possible speed ordered that book. I knew we lived too far away and had no hope of getting to this clinic but I could read that book. The name of the book is Tourette Syndrome and Human Behavior by David E Comings M.D.. I may not agree with everything in the book, I rarely agree with everything anyone says, but this book was very informative and helpful for us to understand Emma and how to help her.
When the book arrived I read for about a week! It is a very thick book and soooo informative. He talked about meds and I learned that Emma was on the right one probably but on way too high a dose. I learned that firm parenting was absolutely necessary for these kids. I learned that only about 3% of Tourettes kids have any kind of the obscene outbursts that people commonly think of. I learned that about half of the kids with Tourettes get most of the symptoms around puberty and around their late teens the symptoms will disappear. I learned that Tourettes is a bit of a roller coaster, it has extreme highs and some points of remission and the meds should never look at 100% control only about 80%. The idea being that when you're in a remission time you should cut back on the meds and increase them on the upswing.
Well now I have real information! I went to our family doctor with the book and was very blessed to find in him a doctor who was willing to learn. He took the diagnoses and the book and agreed to read and study and even call the author for a consultation and help us find the correct dose for Emma. He cut her meds down to about a third and gave us the info and cooperation we would need to handle her med fluctuations. He talked to her as a human being and gave her such a safe place to talk that she felt very good about telling him things he needed to know in order to help her.
Now I will tell you that Tourettes can be a scary diagnoses. I can tell you that I had great hopes that Emma would be one of the lucky ones who would out grow it. I can also tell you that she is a great kid or young woman now and maybe she wouldn't be this great person if she didn't have Tourettes. It's really hard when you see her in repetitive motions and you know she's hurting herself. It makes you want to cry when she has these whole body ticks that cause her extreme pain and she's crying and all you can do is hold her and talk to her until she can stop.
I will also tell you that even though we felt Emma's pain, we did not allow her to use it as an excuse. Emma had chores, she went to school, she was expected to behave and have respect for others. There isn't a mean bone in her body but sometimes she could hurt people because of her outbursts, she was held accountable for that and it helped her to grow. Emma knew that home was always a safe place and she was very loved. She also knew that everyone has their own problems or worries or issues, hers just happens to be Tourettes, so get over yourself!
Emma qualified for an IEP (individual educational plan) at school, but I wouldn't even consider it. She required a little more patience at times but she was fully capable of doing the work and the rest of the world wasn't going to roll over for her the rest of her life, so now was the time to learn to deal. The only thing we did for her was at the beginning of every school year I sat with Emma and we wrote a letter to her principle and every teacher she would have. The letter told the teachers of Emma Tourettes, the myths and the things that she was currently struggling with and what they could expect from her. We confirmed that Emma was a full time student and they could expect everything from her that they could anyone else.
This letter was very helpful in a few ways......although some years it was hard for Emma to give her private information out, when she did have an out burst the teachers knew what was happening and she didn't get into trouble. And as Emma shared with teachers and friends or through reports and things at school she was able to educate her peers and teachers about Tourettes. She has learned as she's grown that Tourettes is nothing to be ashamed of, just something to deal with.
Some other things we have learned......OCD and IBS are very common companions for Tourettes kids. Lucky Emma gets to have both! IBS cannot be cured but can be helped with some easy things....cut out all caffeine, eat lots of fiber, get plenty of sleep, eat several small meals a day, careful with the fat in your diet, yogurt is helpful! We have learned that serotonin is important and if she takes the supplement 5HTP from the health food store every night it does make a difference in how her day goes. We have learned to laugh with her, to point out when she's doing something she's not really aware of so that she can stop, to over look days when she's completely out of control, to accept that her issues are visible when most peoples are not, that doesn't make her weird. We have learned that Tourettes kids need more parenting not less, they need more humor, not less, they need structure, hope, good friends, and the ability to love people even when they don't deserve it. We've learned not to be embarrassed by her because then she's embarrassed too. We've learned to help her to laugh and to accept and to cry when she needs to. We've learned that she will probably always be a person of absolutes and when she's emotional you just need to listen and be patient and she'll come around later.
Emma is now 21 years old and a very special young woman. She's a great example and a cheerful person. She may always have Tourettes, it may always ebb and flow, but she continues to learn how to deal with it and how to live her life well with it. Some people have learning disablilities, some have cancer, some have families that are not functioning, some have no legs, Emma has Tourettes.....so what! Learn about it, learn to live with and through it, learn to be happy, Emma has shown us it's all possible.