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Thread: Info for Parents of Kids with Special Needs

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    sea witch thalassa's Avatar
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    Info for Parents of Kids with Special Needs

    I debated about putting this here, or in the news section, or in science...but I figured this specifically is probably something of more interest to parents and family, and that we could turn it into a general info/advice/discussion sort of thread of parents with kiddos that have special needs.

    So...here it is--from ADHD to autism to anxiety to Down's syndrome... Share info, resources, or just your story!


    New news on autism:
    http://news.yahoo.com/autism-may-tie...212009245.html
    “You have never answered but you did not need to. If I stand at the ocean I can hear you with your thousand voices. Sometimes you shout, hilarious laughter that taunts all questions. Other nights you are silent as death, a mirror in which the stars show themselves. Then I think you want to tell me something, but you never do. Of course I know I have written letters to no-one. But what if I find a trident tomorrow?" ~~Letters to Poseidon, Cees Nooteboom

    “We still carry this primal relationship to the Earth within our consciousness, even if we have long forgotten it. It is a primal recognition of the wonder, beauty, and divine nature of the Earth. It is a felt reverence for all that exists. Once we bring this foundational quality into our consciousness, we will be able to respond to our present man-made crisis from a place of balance, in which our actions will be grounded in an attitude of respect for all of life. This is the nature of real sustainability.”
    ~~Llewellyn Vaughan-Lee

    "We are the offspring of history, and must establish our own paths in this most diverse and interesting of conceivable universes--one indifferent to our suffering, and therefore offering us maximal freedom to thrive, or to fail, in our own chosen way."
    ~~Stephen Jay Gould, Wonderful Life: The Burgess Shale and the Nature of History

    "Humans are not rational creatures. Now, logic and rationality are very helpful tools, but there’s also a place for embracing our subjectivity and thinking symbolically. Sometimes what our so-called higher thinking can’t or won’t see, our older, more primitive intuition will." John Beckett

    Pagan Devotionals, because the wind and the rain is our Bible

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    The Gaze of the Abyss B. de Corbin's Avatar
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    Re: Info for Parents of Kids with Special Needs

    As a teacher, I see a lot of kids every day.

    Many of them are miserable. The amount of depression and anxiety, particularly in hard economic times when parents are out of work, marriages are crumbling, and the kids are shoved onto a back burner because mom and/or dad have huge immediate concerns, is astonishing.

    I know a lot of parents are against meds, for one reason or another, but, when the meds are REALLY needed, it gets close to child abuse to refuse them. Nobody expects a diabetic to just tough it out without meds - depression, anxiety disorder, and the ADHD alphabet soup, are every bits as much physical conditions as is diabetes.
    Those who have suffered understand suffering and therefore extend their hand.

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    Apprentice of Doom Shahaku's Avatar
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    Re: Info for Parents of Kids with Special Needs

    We have a really bad issue around here of kids being diagnosed with ADHD by their teachers. The teacher says "your kid has it, get them on meds." And the doctor doesn't even consider it. They just write a prescription. So lots of kids have been getting put on the meds without proper evaluation and really they're just particularly excitable, just need to learn a little self control, etc. My husband's family has had a couple issues with this in recent years, my husband himself being incorrectly put on the meds as a kid... then they just gave him a higher dose when the hyperactivity became worse...

    So, I'd say it's really important to get proper, professional opinions on whether your child should be medicated for any mental condition or not. I do think over diagnoses is a problem.
    We are what we are. Nothing more, nothing less. There is good and evil among every kind of people. It's the evil among us who rule now. -Anne Bishop, Daughter of the Blood

    I wondered if he could ever understand that it was a blessing, not a sin, to be graced with more than one love.
    It could be complicated; of course it could be complicated. And it opened one up to the possibility of more pain and loss.
    Still, it was a blessing I would never relinquish. Love, genuine love, was always a cause for joy.
    -Jacqueline Carey, Naamah's Curse

    Service to your fellows is the root of peace.

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    The Gaze of the Abyss B. de Corbin's Avatar
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    Re: Info for Parents of Kids with Special Needs

    I'm not sure what the deal is in Iowa, but if I attempted to diagnose a kid, I'd most likely be fired. Teachers are not qualified to make medical diagnoses.

    Now, I might suggest the kid be checked by a qualified medical practitioner, based on my in-class observations, but the qualified medical practitioner still has to do his/her job.

    When something such as you've described happens, I suggest that a parent take his/her kid to a doctor willing to do his/her job.
    Those who have suffered understand suffering and therefore extend their hand.

    I can't do everything, but I can do something.

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    sea witch thalassa's Avatar
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    Re: Info for Parents of Kids with Special Needs

    Quote Originally Posted by Shahaku View Post
    So, I'd say it's really important to get proper, professional opinions on whether your child should be medicated for any mental condition or not. I do think over diagnoses is a problem.

    I think, if you look at the problem, its not so much overdiagnosis as it is problem is MISdiagnosis. There are several things that ADHD can be mistaken for, and several things that a child can have in addition to ADHD---usually those things are anxiety disorders, food allergies, and sleep disorders (but there are others). All of those things will change how they should be treated. Plus, medicating for ADHD is a lot of trial and error--a child's needs will change over time, and not every child does well on every medication. And, while medication "works" better than behavioral therapy (without meds), a combination of behavioral therapy AND meds is the best treatment for children with ADHD...and properly medicating a child with ADHD means they are less likely to develop drug addictions later in life (often as a method of self-medication). This is also why diagnosing kids that actually have ADHD is so important (and taking a second look at kids who don't respond to medication--seriously, Sharkbait on meds and Sharkbait off them is like night and day...if he's not taken them, you KNOW just by watching him for 5 minutes). I'd be willing to bet that "under"diagnosis is as much of a problem as "over"diagnosis--or, more correctly, the WRONG kids are being diagnosed.

    To be honest, I think the education system is over burdened and teachers aren't aren't given enough training on behavioral problems, and the methods of handling them (behavioral therapy works well for kids without behavioral problems too)...and their class sizes are too big to teach effectively, particularly when so many kids have learning differences. Smaller class sizes and better training (by people that specialize in it) would give teachers a bigger tool box for these kids. And, more non-structured outdoor time...prefereably NOT on a playground, and more play time, more art, more music, less standardized testing, less expecting kids to be cookie cutter.

    And...too many parents fail to do their reseach. Part of *that* is a societal problem because too many people never learn to do research properly--what consists of good information, how to interpret (or even find) scientific (and medical) studies and information. They expect that they can give a kid a pill and it will *fix* them, like an antibiotic does...mostly because of the marketing. Honestly, I'm of the opinion that parents need more resources for when a kid gets diagnosed with any major condition that is expected to affect much of their lives, or at least their childhood. You can not parent a kid with ADHD in the same way you can get away with parenting a regular kid, it just doesn't work for them and it will frustrate the heck out of both of you--they are less resilient, they need more help to develop empathy, they take more time to do even simple tasks that require concentration, they are more likely hurt themselves and break things, they are more likely to blow up at seemingly small frustrations, they need more instruction in developing social skills....I make the joke that Sharkbait is my "extreme sports kid" or "10 kids packed in 1 body".

    Also, while I do think there may be some GP or non-specialty pediatricians diagnose children with ADHD rather than discerning between some of the other conditions it could be, I think that is largely because they lack the expertise and training to do so and the resources (time and money) to get training in every.single.disorder. that exists out there--our knowlege of our bodies and our minds, and how they work is unprecedented. Parents need to ask for (and physicians should recommend) a second opinion (though health care which often won't pay for it) for things outside the realm of basic health care. My kids' pedi takes care of their sniffles, their bumps and bruises, their yearly check up and their shots...and for his ADHD, Sharkbait goes to specialist (he specifically goes to a Neurologist that specializes in ADHD and autism-spectrum disorders at the local children's hospital).
    “You have never answered but you did not need to. If I stand at the ocean I can hear you with your thousand voices. Sometimes you shout, hilarious laughter that taunts all questions. Other nights you are silent as death, a mirror in which the stars show themselves. Then I think you want to tell me something, but you never do. Of course I know I have written letters to no-one. But what if I find a trident tomorrow?" ~~Letters to Poseidon, Cees Nooteboom

    “We still carry this primal relationship to the Earth within our consciousness, even if we have long forgotten it. It is a primal recognition of the wonder, beauty, and divine nature of the Earth. It is a felt reverence for all that exists. Once we bring this foundational quality into our consciousness, we will be able to respond to our present man-made crisis from a place of balance, in which our actions will be grounded in an attitude of respect for all of life. This is the nature of real sustainability.”
    ~~Llewellyn Vaughan-Lee

    "We are the offspring of history, and must establish our own paths in this most diverse and interesting of conceivable universes--one indifferent to our suffering, and therefore offering us maximal freedom to thrive, or to fail, in our own chosen way."
    ~~Stephen Jay Gould, Wonderful Life: The Burgess Shale and the Nature of History

    "Humans are not rational creatures. Now, logic and rationality are very helpful tools, but there’s also a place for embracing our subjectivity and thinking symbolically. Sometimes what our so-called higher thinking can’t or won’t see, our older, more primitive intuition will." John Beckett

    Pagan Devotionals, because the wind and the rain is our Bible

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    Apprentice of Doom Shahaku's Avatar
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    Re: Info for Parents of Kids with Special Needs

    Thanks, Thal!. Misdiagnosis is probably correct. You just see a lot of the cookie cutter style being applied to disorders as well now I guess, around here. "Oh, you're having some sort of mental/attention issue? It must be ADHD. Or maybe Autism." Definitely nothing else. And no way it could be you're just acting like a kid and need some help developing some skills. It's like they don't even try, or tell the parents to try this or that, before medicating. And I don't know if this is all over Iowa, or just my area. It could just be my area. We live in.. well what's considered a city for Iowa. Nothing like Chicago, but still tons of kids, way not enough teachers.
    We are what we are. Nothing more, nothing less. There is good and evil among every kind of people. It's the evil among us who rule now. -Anne Bishop, Daughter of the Blood

    I wondered if he could ever understand that it was a blessing, not a sin, to be graced with more than one love.
    It could be complicated; of course it could be complicated. And it opened one up to the possibility of more pain and loss.
    Still, it was a blessing I would never relinquish. Love, genuine love, was always a cause for joy.
    -Jacqueline Carey, Naamah's Curse

    Service to your fellows is the root of peace.

  7. #7
    Silver Member Tylluan Penry's Avatar
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    Re: Info for Parents of Kids with Special Needs

    Almost impossible to get a child diagnosed on the autistic spectrum in my part of the world. Can take years...
    www.thewolfenhowlepress.com


    Phantom Turnips never die.... they just get stewed occasionally....

  8. #8
    The Gaze of the Abyss B. de Corbin's Avatar
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    Re: Info for Parents of Kids with Special Needs

    Quote Originally Posted by thalassa View Post
    To be honest, I think the education system is over burdened and teachers aren't aren't given enough training on behavioral problems, and the methods of handling them (behavioral therapy works well for kids without behavioral problems too)...and their class sizes are too big to teach effectively, particularly when so many kids have learning differences. Smaller class sizes and better training (by people that specialize in it) would give teachers a bigger tool box for these kids. And, more non-structured outdoor time...prefereably NOT on a playground, and more play time, more art, more music, less standardized testing, less expecting kids to be cookie cutter.
    Amen to that.

    As far as research goes, a parent should put AT LEAST as much work into understanding their kid as they would into buying a new car. WebMD is a great place to start - so much info on many different aspects of medical problems - standard meds, side effects, things to look for, evaluation of various treatments with the + and - of each, symptoms, things to watch for, etc., etc.
    Those who have suffered understand suffering and therefore extend their hand.

    I can't do everything, but I can do something.

  9. #9
    sea witch thalassa's Avatar
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    Re: Info for Parents of Kids with Special Needs

    I'm not really shocked...because there have been news stories from time to time on this (and we've talked about it here)...but to bring the subject up again:

    http://www.motherjones.com/politics/...ental-disorder

    Rather than make this a debate on the appropriateness of the cuffing a small child (and yes, this child is small) with an atypical neurological disorder (because yes, ADHD is more than a kid that doesn't want to listen and can't sit still, whose parents didn't parent enough, regardless of what you think is *really* wrong with your nephew or your neighbor's kid or that kid on Dr. Phil) in what is a clear violation of that state's law by a person that should be trained well enough to know better...lets go with practical information and advice:

    You need to know (special needs or not) what your school's policy is (and whether or not it is compliant with state or federal laws) regarding disciplining your child. You also need to know that just because it complies with state or federal law does not mean that your child has any legal protection from physical or chemical restraint, from the use of seclusion and isolation rooms (including rooms that are externally locked and hopefully no one will forget them if there's a fire), or that (should these or any other forms of restraint be used) that YOU EVEN HAVE TO BE NOTIFIED of the use of such methods with your child.

    Additionally, If you are the parent of a child with special needs in any US school system your child needs an IEP or 504 plan that identifies them as having special needs. If your school says "oh, but their grades/test scores/whatever are fine and they don't qualify," that is complete and utter bunk, if they aren't following the IEP/504 plan, etc--and if necessary, you should consider getting an educational advocate (if you can afford one). You need to know what your legal rights are as a parent and what your child's rights are by both federal and state statute. And you need to know what your state's laws are concerning restraints. (some states protect all students, others protect special ed students, but most states don't do anything)* Additionally, a parent of a child with special needs can make no restraints/seclusion part of their IEP/504 plan (though, schools don't have to follow a parent's recommendations for their IEP or 504 plan. nor do some teachers even follow the IEP or 504 plan ones its been established...but there is some recourse there for parents)

    *This was written in 2013, some states (like Virginia) may have new/different laws on the book since this was written--Virginia has required the state BoE to adopt regulations, though this seems to be the furthest they've gotten on that so far. Also, Arizona's laws have changed.
    “You have never answered but you did not need to. If I stand at the ocean I can hear you with your thousand voices. Sometimes you shout, hilarious laughter that taunts all questions. Other nights you are silent as death, a mirror in which the stars show themselves. Then I think you want to tell me something, but you never do. Of course I know I have written letters to no-one. But what if I find a trident tomorrow?" ~~Letters to Poseidon, Cees Nooteboom

    “We still carry this primal relationship to the Earth within our consciousness, even if we have long forgotten it. It is a primal recognition of the wonder, beauty, and divine nature of the Earth. It is a felt reverence for all that exists. Once we bring this foundational quality into our consciousness, we will be able to respond to our present man-made crisis from a place of balance, in which our actions will be grounded in an attitude of respect for all of life. This is the nature of real sustainability.”
    ~~Llewellyn Vaughan-Lee

    "We are the offspring of history, and must establish our own paths in this most diverse and interesting of conceivable universes--one indifferent to our suffering, and therefore offering us maximal freedom to thrive, or to fail, in our own chosen way."
    ~~Stephen Jay Gould, Wonderful Life: The Burgess Shale and the Nature of History

    "Humans are not rational creatures. Now, logic and rationality are very helpful tools, but there’s also a place for embracing our subjectivity and thinking symbolically. Sometimes what our so-called higher thinking can’t or won’t see, our older, more primitive intuition will." John Beckett

    Pagan Devotionals, because the wind and the rain is our Bible

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    Member Wenny's Avatar
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    Re: Info for Parents of Kids with Special Needs

    My mom taught high school and middle school. From what I saw (and I didn't know more then what she told me, you know work ranting) that it is schools 20% effort to the parents 80% effort to advocate for the child but parents don't know how to advocate or just don't care.

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