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Thread: Labeling Children

  1. #1

    Default Labeling Children

    Has anyone's children been academically left out because they have been labeled with TS or ADD or ADHD?

    What people have you told the diagnosis to?

    Have you told someone and regretted it?

    Have you told people and they have been supportive?

    I am nervous about telling people because they might look at my child differently. I would love to hear everyone's good or bad stories, if possible. Steph

  2. #2
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
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    Default Labeling Children

    Steph,

    You are referring to stigma's.

    Regrettably ignorant people stigmatize situations they do not care to understand. It's not a problem that has to do with you or your son as much as a problem with the person applying the stigma.

    Disorders that are misunderstood are frequently stigmatized, such as various forms of mental illness, like depression and schizophrenia. But it's not just psychiatric disorders, but historically medical conditions like AIDS and epilepsy, Parkinson's and even people with severe facial burns or port wine stain.

    Ignorant people will always find reasons to exclude others from the so called "in group" because of race, color or religion as well as their socio economic status...the list goes on and on, but you get the idea.

    Who should you tell? Tell people on a need to know basis. If your son was diabetic, would you be telling everyone you meet? Same deal here..and I would advise keeping it simple.

    You could say, "It's called Tourette Syndrome, which is a neurological disorder that causes people to tic or make sounds involuntarily. No, you can't catch it."

    You may also want to carry around a printed explanation of Tourette such as the FAQ brochure from TSFC or this one

  3. #3

    Default Labeling Children

    Steph,

    I cant say every person you encounter and tell about your sons TS is going to react in a positive way. Like steve said, its the person who reacts in a bad way who has the problem. I will for the most, most people I encounter and I bring up my TS to, I get a positive reaction. By that I mean they understand that it is a disorder and though they may not know what it is but hey understand its something I was born with and not something to judge me by. Some even want to know more(I actually like those people, get people to understand TS)

    As your son being young it may be harder maybe at school or other situations where kids his own age are with him but lets be honest, when your that young, any "different" thing someone has is right for teasing. As people get older, those ignorant become the few. I would say honestly my hardest "social" situation with TS is when Im around people I dont know and I dont plan on introducing myself or even talking. i.e. waiting in line, sitting at a resturant. But you finds ways around it I guess.
    The other day at a local grocery store, I saw a rack with books on it and one of them said, "pregancy for dummies"............

  4. #4

    Default Labeling Children

    This evening I told my brother that my son might have TS and ADD, then he told me I was wrong. Stating he doesn't have any of these things and that the reason that he is not doing well in school is because he is just going through a phase and he will grow out of it.

    I was shocked! I am a nursing student and I think my assessment skills are certainly good enough to detect if my son is faking it. I found it sad that he felt this way. Steph

  5. #5
    Join Date
    Jun 2005
    Location
    St. John's NL
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    Default Labeling Children

    Hi Steph

    I tell everyone as the opportunity arises. The schools of my two oldest kids were in-serviced upon diagnosis and now that my twin is in kindergarten I am alluding to the teacher that there may be a concern. Two weeks after they started I sent in checklist so she would know what to look for. Now everyone is not like me, I know, but I guess my point is that I treat TS as if it was any other disorder. If it was diabetes or epilepsy etc I would be in the first weeks of class making sure the teachers knew what to look for if there was a problem.

    If you present your child to world as normal, then the expectations set for that child by his peers, teachers, etc is that s/he is normal and then when the behaviors are outside the expectations, then there is confusion, mis-understanding, etc and people see the unexpected behavior as odd. When they know the child is not normal and that s/he has "symptoms" then when they are not surprised when the symptoms present.

    The TS awareness bands are a great ice breaker. My 7 year old wears it and when someone asks he just saws, "its for Tourette syndrome cause I got it."

    You have to find your own comfort level with the diagnosis first. If you are still not comfortable you will struggle with talking freely about TS. Keep exploring and reading and practise with telling people you know. How long has it been since your child was diagnosed?
    Janet, mom of 4

    TSFC Homepage


    "Intelligence is always increasing; accommodation allows your intelligence to do what it has always done." Cassie Green, Washington College

  6. #6
    Join Date
    Apr 2005
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    Default Labeling Children

    Steph,

    The reaction of your brother is not at all unusual in some family situations. As a nursing student, you are undoubtedly familiar with the human response of denial.

    Can a third party counselor or health professional help in a relationship where one partner unwilling or incapable of providing support?


    Sometimes a third party counselor or a physician can of assistance in informing/educating your family members, when they are unwilling or incapable of providing support.... provided they are willing to listen, to help them understand that sometimes it isn't just "bad habits", "behavior", "stubbornness", or "drama".

    They have to be made to understand Tourette is not a behavioral disorder, but a neurological disorder.

    Being a neurological disorder, the expression of the disorder through tics etc is involuntary.

    Behavioral modification will not stop the tics and the ADD and ADHD needs medication prescribed by a competent physician who understands the disorder.

    Some possible dynamics of denial:

    "A member of my family couldn't possibly have something like this!"

    Could it be fear?:

    "I don't want this to be true so I refuse to let it be true."

    Or, could it be about power struggles?:

    "She thinks this is a problem and I am angry with her so I'll refuse to accept this" .

    Friends support friends in time of need, and the same should apply to family relationships.

    Would it be different if the situation were reversed or if the need for support was in connection with a medical issue like cancer or diabetes?

  7. #7
    Join Date
    Mar 2005
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    Ontario
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    Default Labeling Children

    Steph

    You have been offered some sound advice and shared experiences.

    It is only human nature to reach out to family first for support like your brother but also human nature not to get what you are looking for.

    Be patient with your brother and leave him on the side line as you gather more information and direction to care for your son. He will catch up in time and when he says how great your son is doing you can tell him what you did to get him there.

    I've had family that was not the greatest support or even was concerned what to expect or do when caring for my son on short stays at first.
    In time it gets better.

    A need to know basis is correct and I have found very important in school to assure my son was not punished for something that he did not understand how to control (even if he could/could not).

    If your son has ADD or ADHD, and it becomes managed by med's, diet, etc. his grades will improve and attention span in class. The TS can be a stress reaction and cause some minor problems but there are tools that can be used to allow your son to get the tics out and not be in the classroom.

    This is why I asked you earlier if your school has programs. You do not have to have your son pulled from class to participate. There are flexible schedules in most schools if you ask.

    The first person you need to talk too is your son. There are some good books that relate to TS on this website. Once involved with a local chapter you maybe able to find more material.

    Having someone come in to the school (in-service) to explain TS is a good thing, especially for your son's age level.

    You will find some interesting stories and feed back on this forum.

    My favorite explaination of TS is:

    TS is like holding your breath and being told to continue not breathing. It is impossible and unfair to assume someone could do that. Having tics is no different. Yes will relaxation techniques and other options you can curb the tic but suppressing it only makes it worse later.

    Be patient with yourself, family and especially your son. Yes TS needs some medical attention just like asthma for example. You would not ignore it would you? You'd tell those that cared for your son, right?

    In time you will learn how to read people and have the material available to pass on if you confuse them with details.
    PJK

  8. #8

    Default Labeling Children

    Steph,

    My son was in the middle of grade three when we first informed his teacher and school. At first everything was fine, he continued to excel in his all his subjects then everything took a downhill slide. He was labelled.
    He came home in tears everyday from school wishing that he wasn't alive and no longer had to suffer the ridicule from his teacher or peers. The last few months of his grade three year were the hardest months we ever dealt with, so far. Unfortunatly, the stigma of TS has carried over into his grade four year. The school automatically assumed that he had learning diabilities because of the tourette's and placed him at the junior level. I was furious and spent the first month of the new school year fighting with the principal over my son's acedemic preformance. They kept telling me that he wasn't at the grade four level but his progress reports proved otherwise. Luckily, his new teacher has come to realize that he is exceptional for his wit and character and not because of the tourette's. It is unfortunate that our children our labelled and that as many times you will cry for him you will spend fighting for him.

  9. #9
    Join Date
    Mar 2005
    Location
    Ontario
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    Default Labeling Children

    Lara:

    We have had some bad experiences too and my son has paid dearly for the way adults have treated him.

    My son has a 140 IQ and went from A-B's to D's in a matter of nine weeks over the way he was treated.

    We have changed schools and we have been told that they are used to children with multiple disorders. If you review the staff you will find that they focus on programs driven to assist children like ours yet any other child in the neighborhood attends too.

    We were drawn toward it since they moved the territory for attendance and dropped 250 students from last year to provide smaller classes and more attention to the children.

    It is a shame when out children have to educate the adults in charge.

    On a positive note, he has learned that he is alright and he if he has to tic that it is alright too. He is learning more about his disorders including TS and his self esteem is much higher then it use to be. For this reason he does not let people bother him as much anymore and has learned to walk away.

    Do you have any other options for school in your area?
    PJK

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