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  1. #1

    Default New to the Forum

    Hi everyone, My name is Colleen aka Mama Dukes...I have 6 kids, 3 of which are my own and 3 of which I took in to work with. Two of my own children Tyler and Ryan are 10 and 5 years old. They both have Tourette's and my 5 year old was just diagnosed. I have noticed tics in my 5yr old since he was 2 and he was just recently diagnosed. We have had a lot of issues over the last 5 yrs with my oldest son Tyler who is now 10, the school would not acknowledge the fact that he has Tourette's along with ADD, ADHD, OCD, ODD, Rage Disorder, Anxiety, LD, Sleep disorder and an immune compromise. The school neglected him and passed him along from grade 1-5 without seeing he has learning disabilities. A wonderful woman (doctor) named Rosemary finally started working with Tyler in May 2006 and has cleared up with the school and the board who Tyler is and what his needs are. We are now making progress with him. Hooray!! Sadly though with my younger son he seems to have a more severe case of Tourettes and the doctor in emergency was quite embarassed to say "Your son has Tourette's Syndrome" instead she said to me "I think your on the right track" When asked what she meant she had to look around to be sure nobody was listening and whispered to me "The last thing you said to the nurses you thought he had tics" I said "OH you mean TOURETTE'S SYNDROME?" she looked about and whispered "yes". I said well ok then, but you need not be embarassed my older son here has it as well and we are ok with it. I said he is not going to cough and your going to catch Tourettes its not a disease you can catch its ok you can say T O U R E T T E " S it won't hurt you and you won't catch it. With that I left the hospital feeling somewhat victorious for the ignorance of others. People really need to understand what Tourettes is and not look an innocent child as though they are a disease as kids are very sensitive and pick up these things without words even being said. Body language is a wonderful thing but not when its being used in a negative manner. I guess I just want to say is that we are new here, this is just a mild amount of things we have been through but we are looking for others in similar situations to know we are not alone and that my boys are normal just like everyone else. I tell them everyday "you are not the ones who are different, the rest of the world is guys, you are special and normal, the rest are different and need to know who you boys are!" They are my life and the reason I breathe everyday. I thank God for the gifts he has given me on a daily basis. Thanks for reading this and I hope everyones journey's are filled with exhilerating experiences to make us stronger in our Tourette's world.


    Thanks again!
    Colleen, Tyler & Ryan

  2. #2
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,939

    Default Re: New to the Forum

    Welcome to the TSFC Forum! It's great to hear your positive message of support. Have you been in contact with any local Tourette support organizations in your area to share your experience?

  3. #3
    Join Date
    Mar 2005
    Location
    Ontario
    Posts
    962

    Default Re: New to the Forum

    Colleen:

    Welcome to the TSFC forum and I am glad you found us.

    Education is the key to understanding and although many strides to accomplish this have been made we have not completely succeeded in our quest.

    You obviously provide a great deal of support to the children and have a great attitude about TS.
    Does your youngest understand what is happening to him? Sometimes it is hard to explain to to a 5 year old that TS is alright even if they see it in others. There are some great books available that might help or short explanations can suffice to ease the transition. You may find once he has completely accepted the TS and better understands the tics may ease up some. Since you have already experienced the process with Tyler I am sure you understand that tics come and go, sometimes they can seem unmanageable or consuming to ones life. It can get better and I hope you and your family find some reassurance here on this forum.

    If you visit the parent section, tic parade and treatment options section you will find some great tips, personal stories and key information to help both the boys during your daily life.
    I suggest keeping a journal to track highs, lows and the tics you see. Documenting can find triggers and provide clearer views on progress with coping and dealing with situations.

    I look forward to your participation and hope you find the search tools helpful to find topics you can join and some answers to questions you may have.

    Take care.
    PJK

  4. #4

    Default Re: New to the Forum

    Thank you so much for your kind words. I have kept a journal on tics but have not thought about books to help my 5 yr old Ryan. I will definitely look through the posts for advise and tools to help us on our journey. The tics my little one has right now are the eye blinking, gasping for air and blowing out and a cough that is really disturbing, its like it consumes his whole body just trying to breathe and yet he says he can't help it. I have sat with both boys and tried to explain how much they are a like but so different in so many ways but together we all will be just fine. Its nice to know other people have the same fears as I do with their children. It is such a cruel world out there and we know first hand about the torture other children can put other children through. The kids in our neighbourhood used to chase Tyler through the bike trails across the road from our house and throw stones, stick Tyler and chase him home chanting they were going to kill him because they did not want to catch what he had. When I approached these kids I explained to them how Tyler was different and they need not worry about catching anything as Tyler is not carrying a disease. These kids I took home to their parents to tell them that their 8-10 yr old kids were sticking my son beating him and throwing rocks at him (tyler was covered in cuts and bruises) and the parents simply said this to me "Ah well you know they are kids what are you going to do?" That was not an appropriate way of dealing with the situation what so ever and I said well if my children ever chanted they were going to kill someone because they were different, or a different race, religion, creed, beliefs, looks whatever the situation may be they would be spoken to about it and have privledges taken away from them. These people laughed in my face. So to say the least its been a struggle but I have my internet world of people here I have found to chat with and hopefully bring some solice to our home and peace and harmony with my kids. As for a support group out my way, I have called the foundation and there are no chapters out this way and I would really like to start my own chapter out this way. I don't know how to start one but if you have some tips on what I can do to start it, I would appreciate it.
    Thanks again for all the support from everyone here, it has made my day to come in and read replies.
    Keep on ticcin and smiling
    ;)
    Colleen, Tyler and Ryan

  5. #5
    Join Date
    Mar 2005
    Location
    Ontario
    Posts
    962

    Default Re: New to the Forum

    Colleen:

    I would recommend you contact the foundation again and inform them of your interest to establish a support group in your area. They are always looking for volunteers and parents that want to be active. They can provide some direction.

    I would also recommend after speaking to them for advice that you post a message in the TSFC News section but do not provide a personal email or contact information. Just specify a general location and allow them to (pm) on this forum to provide some privacy.

    As for the parents, I personally suggest if these kids attend the same school you should let the staff know of your experience as well as the social service worker in charge of your school. They can keep a closer eye on the situation, show your son he has some support and with some specific locations of the children their parents can be warned of future charges that could be placed to protect your son and others. What you are describing is obviously wrong and no child deserves to be victimized.

    The tics you describe we have experienced. The coughing tic can become so bad for my son that his throat became raw. The sound is disturbing and the experience over time became very painful.

    That's about the time I cut back on soda's, removed dark soda completely and started providing a common herbal swiss cough drop to keep his throat from feeling so bad. He also tried breath control techniques that helped from time to time. At the time he was under a lot of personal stress with kids from his school and uncertainties for treatments. Once life began to settling down the tic went away.
    Your son is right about not feeling like he has control over it. Focusing on it unfortunately can make it worse as the stress adds up. With any tic you have to find the trigger and then try to defuse it.
    The journal can help in cases like these. You can also check out the tic parade section for more tips that might work.

    I hope you are able to frequent often on the forum. It made a major difference for our family and this is why I volunteer as a moderator.
    PJK

  6. #6

    Default Re: New to the Forum

    Thank you so much for the kind words. Sadly, these kids go to the local Catholic School, my son Tyler has an immune deficiency so he does not attend school he has to be schooled at home due to infectioin. (the stomach flu sent him to Sick Kids and almost cost him his life on more then a few occassions) He becomes very ill unlike us who can fight off colds, flus, ear aches etc Tyler cannot, it attacks his blood stream and he then becomes septic bacterial through his whole body and ends up in the hospital until better. The parents of these kids I have forwarned them police action would be necessary if their children continued with my boys. It just doesn't seem to matter these people have no morals or values they think its funny and a very normal part of a childs life to be a bully?? I have big issues on this, keep the boys with me at all times, I play with them as do my girls. I have had words again this past summer and we are at the point we are looking to move out towards the country, with more land and build the kids their own park. No matter where we go kids seem to pick on the boys due to tics. Kids can be cruel, but it all starts at home with the parents and family educating their children on others disabilities and teaching them how to cope and behave with others that are different. But as most see society is kind of going down the tubes with shootings, school shootings, gang beatings so much violence its really scarey out there.
    I will be on this forum as much as possible, I am so glad to know the coughing tic is normal, phew, he had me so scared and of course he is only 5 (ryan, with a new diagnosis of Tourette's) and really doesn't know what his body is doing and I am trying to make it an easier transition for him to know his body is doing these things because it has too and for him to just slow down a bit and take it easy, he seems to be doing a bit better especially with me not constantly asking him if he is ok. 8 weeks of him coughing and taking extremely deep breaths was really worrying me as he is asthmatic. Now I know this is a tic its making it a lot easier to contend with. My oldest son Tyler's transition was much easier then this one. But by the grace of God we make it one day at time somedays one hour at a time. I will phone the foundation monday morning and start getting some info to start a chapter out my way, I would love nothing more then to have meetings with others and their children for my boys to go meet and make some new friends. I met Dr. Duncan McKinley a few years back at our local high school and he put so much insight into Tourette's and other disorders that I felt like I knew all I could know in 3 hours. Upon coming home it made our life so much sunnier and easier knowing what we were dealing with and that is when I did alot of investigating and reading on disorders.

    I will keep rambling on here, but thank you so much for the information you share so willingly with me and I will keep you posted on our progress...Thanking you again!!

    Colleen, Tyler and Ryan
    As I say to them, Dr. Dunc's advise "Keep on ticcin boys!!"

  7. #7

    Default Re: New to the Forum

    Hi Colleen:

    Have you thought of having your kids (or someone else) do a presentation to their classmates on TS?

    This may help with the teasing. Most kids do not know what TS is and it is understandable (though not right) that they just may think your kids are weird and the things they do are purposeful.

    If you decide to go this route remember to keep it simple and age appropriate. A good angle to use in getting the presentaion off to a good start for kids is to tell them about some of the famous people that have TS, ADHD and OCD and other neuological issues or learning disabilities. This piques their interest and makes them realize that your kids are special not just wierd and they too can be successful.

    Here are a few that I have been told about or read about:

    Tim Howard: pro soccer goalie for Manchester United has TS
    Howie Mandel: comedian and host of a new game show (Deal or No Deal I think is the name) has OCD
    Jim Carey: comedian and movie star has ADHD
    Robin Williams: comedian and movie star (not sure what he has but have been told he has "leaky brakes")
    Jim Eisenreich(sp): pro baseball player has TS
    Tom Cruise: movie star has dyslexia
    Chris Jackson (Mahmoud Abdul-Rauf) : pro basketball player has TS
    Mozart: famous composer has TS
    Michael Wolfe: jazz pianist has TS
    Amy Wilensky: author has TS

    Hope this helps.

    Patti

  8. #8

    Default Re: New to the Forum

    Thank you Patti for your suggestions. I think its a good idea for sure to educate the children on these issues, but the only problem is with that, is these children who bug Tyler live on the same street as me, go to a Catholic School and some go to other Public Schools in the neighbourhood and my son Tyler does not attend school at all. He has a teacher who teaches him at home due to his immunity. I don't know how I would go about actually going into the schools and doing presentations. I would imagine speaking with the principals and school boards would be a start. But with society the way it is nowadays I believe alot of these children who have these disorders are ignored, looked over, blown off, put away, stuck in a corner or just plain ridiculed as being bad. It should almost be mandatory to educate children about these types of disorders regardless. I do know they have special ed classes and the children are told not to tease these kids they are different, but they all should know about the silent disorders as I like to see them, because really unless you know these kids at home and the tics and such you look at them and would see them as society says "normal". To me all children of all walks of life are normal regardless of color, religion, race, whatever the situation may be, they are all innocent and have no clue what the world out there holds for them and we have to start in our own backyards and educate as many people as we can. We educate about alcohol abuse, drugs, strangers, abuse, inappropriate behaviours and such but what about things such as disorders that affect the brain, or kids walking the railroad tracks as short cuts, or riding their skateboards in the middle of the road or anything for that matter. I mean I know I am off topic here but I believe it all falls under the same category of teaching kids. When I grew up the community watched all the kids and raised them and told parents and they got involved and now a days, people turn the blind eye and pretend it didn't happen, they don't get involved in fear of violence...What is our world coming too? Our children are our future and I believe we need to really get people together as communities and stand up for each other!! Sorry again I have ranted off again, but I get started and my Tourettes kicks in and I go haywire and all over the place trying to make valid points. But thanks for reading again and all the great ideas everyone is informing me of. My boys are excited I am on here talking to other moms and dads and kids about them. They are happy to know they are not alone in this world. Thanks .. Colleen Tyler and Ryan

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