December 19, 2005, 08:55 AM
Hi, New Here
Hi Everyone, My son who is 8 has not been diagnosed yet we are just waiting on the doctor but he has all the symptoms and his father, grandmother, and maybe adult nephew. We also believe that he has ADD and that is creating alot of trouble at school. This very smart child is failing in school, has a great deal of trouble with socializing, and we don't know how to help him. Personally I am having a difficult time coping with this. I thought my child was perfect, I cry when I think about something being wrong with him, and I look at him differently. Please tell me what I can do to help him. Steph
December 19, 2005, 10:36 AM
Hi, New Here
Hello Steph and welcome to the TSFC Forum,
I sense your frustration and concern and I hope by discussing your concerns here among friends who understand Tourette that we can provide you with some insights. With more information about the disorder, you will be able to help your son develop strategies to deal with his Tourette.
As you have alluded to, Tourette Syndrome has nothing to do with intelligence, so your very bright young man is in no way compromised by his disorder if in fact the diagnosis is Tourette.
It's not unusual for a child with Tourette and its associated components like ADD to experience difficulty at school. However, teachers and school authorities are becoming more aware of disorders which affect a child's behaviour and can often help in his integration.
The TSFC can help you with in service education materials for your school and his teachers.
Is your son being seen at a medical facility where his physician has training and and a professional interest in Tourette? Because there is no diagnostic test for Tourette and the diagnosis is made by observation and interview, the physician's training in Tourette is important. Not all physicians possess the diagnostic skills to recognize Tourette Syndrome.
Have you been in contact with a local Chapter of TSFC? Here's some contact information.
Steph, the greatest support you can provide your son is to help him feel good about himself. Once your diagnosis is confirmed, you need to help him understand his disorder, so he can verbalize and explain it to people whom he will encounter.
There are lots of resources to which we can direct you to accomplish this important task.
I am glad you found us, and know you are among friends who can share your concerns but more important who can provide you with the tools and knowledge to deal with your challenge.
In the meantime, look through the Forum and feel free to join in any of the ongoing discussions. Also have a look at the resources on the TSFC Home Page (link below my signature).
December 19, 2005, 12:52 PM
Re: Hi, New Here
Welcome to the TSFC forum and I am glad you found the website. You will find support, related experiences and after reading other posts you will find you are not alone and experiences you have are like others have with their children or family members.
The quote above is very human and real and I am glad you felt safe enough to express it on the forum.
Your son has not really changed though, he is still your perfect little boy. The way you are dealing with his concerns has changed.
Disorders can be a fact of life but do not end your life. You learn in time to deal with them and understand them. How you react will effect the way your son will react. Children read body language and responses too well.
Supporting your son is first priority to protect him and get help for him at school and to push to make sure you get the referrals you need to help him.
Don't hesitate to ask for help too. Having someone professional to talk too about your own feelings might be good idea so that you can be stronger and more focused to help your son.
If your son has TS and/or ADD, he was born with it and although you can trace it back to family members it is still a fact of life. He needs your assurance that he is alright and life is going to be ok.
My son has TS, ADHD, ODD, anxiety. At first it was not easy to understand but you learn how to live with it in time. Asking questions and getting help makes a difference.
Do you have other children? If so, how are they managing? How does his father handle the diagnosis process?
Please keep us posted. Let Steve know where you are located he maybe able to direct you to some support in your area.
December 19, 2005, 08:36 PM
Hi, New Here
My son is an only child and we believe that his father and many other relatives have TS also. When we started reading TS symptoms we recognized that many people in his family have this disease. His father was against starting the medical route but now realizes that it was a good decision. Can you help me with his ability to socialize? He has 2 pretty good friends but others in his class make fun of him everyday and call him dumb. At home we really love him and support him and encourage him to talk about his feelings but we wish there was more we could do for him. Steph
December 20, 2005, 10:53 AM
Hi, New Here
The same things do not necessarly work for all children to socialize them in this case.
Often with us it works better to introduce him to others through experiences outside the home, like skating, karate, riding bike etc.
We are dealing with the same concern here with our 12 yr old. Although he can have up to 6-8 friends, he still seems very issolated in some settings.
Getting him to branch out away from home is not easy either.
Have you asked your school if they have socialization programs for students? Ours has one here. Children have to feel good about themselves outside the home. This is hard for some.
Some children can have very high IQ's but not have the maturity or social skills to survive around others the same age. Kids can be cruel but it is a lesson to be learned and developed.
Providing support at home is obviously important but getting some professional sound advice to help him through may help too.
A clincian may be able to help sort the concern out and offer some tools to work with.
December 20, 2005, 11:40 AM
Hi, New Here
Just to be sure I understand this statement, are you saying his Dad is now in agreement that persuing medical advice is the correct course of action?
Tourette is a legitimate medical disorder (as opposed to a disease) in more precise terminilogy.
As such, it needs to get medical attention by competent and properly trained medical professionals. Up until ten or fifteen years ago, Tourete was relatively unknown, though the condition was described over a hundred years ago.
The very nature of the disorder often confuses people who don't fully understand it as a neurological disorder. The expression and behoviours associated with Tourette are sometimes so bizarre that one could easily think "how could anyone else in the world be doing this?" or "no one would believe the things I do".
This was often the guilt and frustration people lived with in the past, but thanks to information sources like the TSFC which has created awareness among the community, children and adults with Tourette today can get the treatment they need.
The key to improving ones ability to integrate with Tourette is to inform those with whom we come in contact about the nature of the disorder.
Have a look at this online brochure, and consider printing it. Give it to your son and he could give a copy to some of his friends to acquaint them with What is Tourette Syndrome.
Also get a copy of the FAQ brochure from the TSFC which serves as a good handout as well.
December 20, 2005, 12:25 PM
Hi, New Here
My husband was against medical interventions for a variety of reasons. 1 He did not want many tests or needles or invasive procedures done to him. 2 He felt there was nothing wrong with our son. 3 My husbands's parents had him investigated years ago and nothing was found wrong with him.
Steve you are correct and I told my husband what you said. Years ago TS was mainly unknown and that is the reason his TS was missed by the doctors.
My son has always been very active outside the home, he is in hockey, guitar, and is a yellow belt in martial arts. He knows lots of people but only has 2 good buddies. His teacher at school is worried about his socializition when he gets older. But for us, just coming to terms with the reality that there is something wrong with our son is all we can handle right now. But like everything in life we will get through this together. Steph
December 20, 2005, 06:37 PM
Hi, New Here
I wouldn't look at at as something being wrong with your son, but rather this being one of his distinctive characteristics. You know, some people have dimples, others clubbed feet, and others some very serious congenital birth defects.
My point is everyone is born with a certain package of characteristics, some present greater challenges than others, but it's not because of anyone's sinister actions but because we are all different.
In time you will learn that people with Tourette have certain inherent life skills not possessed by others which will enrich their lives and make them valuable contributors to society.
Don't undersell your son, Steph, though I fully appreciate your frustration.
Take it one day at a time and gather information, because information will provide bot you and your son with empowerment to deal with your new found challenge.
And please don't deny your son the medical diagnostic tests he may require, because of fear of what you might find out or because it is felt there's nothing wrong with him.
If a person exhibits behaviours that are abnormal or out of the ordinary or unexpected, there is a reason for it. The reason for the behaviours has to be determined because there are strategies that are available to correct correct them.
There is no shame in requiring medical aid, whether the aid is in the form of physiological treatment or in the form of psychological treatment.
December 21, 2005, 12:12 AM
Hi, New Here
It is good to hear your son is so active with sports and groups.
Once your family has a solid plan of action and your son better understands what is happening everyone concern will grow stronger and closer then ever.
I've met other kids with TS besides my son and I find they are better equiped to handle it then we are not.
Steve is right that most do have hidden talents or strengths that balance the scale and can make them even more successful in life.
Do some reading, see if you have a local TS Chapter in your area and attend a few meetings. If you can not find a chapter close by on this website, then call a national one to ask were you can go for support.
Your eyes will open and help you better understand that it can be alright.
January 1, 2006, 11:24 PM
Hi, New Here
Hola Steph! *waving* sorry to greet you so late, I've not been posting much these days as I'm dealing with some personal stuff. but I'm glad you've found this forum to ask questions and work on helping your son. :D
It sounds like the ADD is main problem. I'm no doctor and please don't take this as medical advice, per se.... but I wanted to point out that when one starts treating something, it can be hard to figure out what med is doing what... so treating the most aggravating symptom first is often a good course of action. once the ADD is under control, if the tics are causing problems, then if you add another med, you have a better idea of what is helping and what is causing undesirable side effects. Often though, tics themselves are not really a problem if the person is surrounded by people who've been educated about the tics and can offer support and understanding.
Whatever you and your doctor decide, I hope it goes smoothly and your son can get back to being 'just another kid' at school.
I hope you'll keep us posted. :D