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Thread: A Bill of Rights For Parents of Kids With Special Needs

  1. #1
    Join Date
    May 2008
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    Red face A Bill of Rights For Parents of Kids With Special Needs

    When I ran across this I knew that other parents of Special Needs Kids probably feel this way too... I know it home with me.


    A Bill of Rights For Parents of Kids With Special Needs.
    By: Ellen

    We, the parents, in order to form a more perfect union, establish justice, ensure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.

    * We have the right to expect our kids to been seen for who they are as individuals, not as labels or diagnosis.

    * We have the right to trust our instincts about our kids and realize that experts don't always know best.

    * We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.

    * We have a right to choose alternative therapies for our kids.

    * We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.

    * We have a right to wonder "What if..." every so often.

    * We have a right to play aimlessly with our children. Not for therapeutic or educational purposes--just for fun.

    * We have a right to blast Bruce Springsteen/ Tom Petty/ "Any Rocker", down a glass of Pinot Grigio, get a pedicure, go out with the girls, or do all of the aforementioned at once if that's what it takes to avoid burnout.

    * We have a right to react to people's ignorance in whatever way we feel necessary.

    * We have a right to not always have our child be the poster child for his/her disability and some days just be a child.

    * We have a right to go through the grieving process and realize we may never quite be "over it".

    * We have the right to give our kids chores...even better, if they can learn to make breakfast in bed for us.

    * We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.

    * We have a right to yet more Pinot Grigio.

    * We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says "suck-y" things.

    * We have the right to tell family and friends that everything may not be OK--at least not how they mean it, anyway.

    * We have a right to hope for an empty playground so we don't have to look into another child's eyes and answer the question: "What's wrong with him?"

    * We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children's challenges become glaringly obvious in the face of all the other kids doing their "typical-development" things.

    * We have the right to give our children consequences for their behavior. They may be "special" but they can still be a royal pain in the ass.

    * We have a right to take a break from "Google-ing" therapies, procedures, medicine and treatments for our kids and to research upcoming concerts, exotic teas or anything not related to our child's disability.

    * We have a right to talk about how great our kids are when people don't get it.

    * We have the right to not always behave as inspirational icons who never complain or gripe about sometimes awful realities of raising a child with special needs.

    *We have a right to expect quality services for our children; not just when they're infants, preschoolers and elementary school age, but, when they're in older grades and adults too.

    * We have the right to adequate funding for those services and to not have to kick, scream or endure a wait for them.

    * We have a right to get tired of people saying (as they give that sympathy stare), "I don't know how you do it."

    * We have a right to wish that sometimes things could be easier.

    * We have a right to cheer like crazy anytime our children amaze us--or weep like lunatics.

    * We have a right to push, push and push some more to make sure our children are treated fairly by the world.
    KACI had Umbilical Cord Stem Cell treatment for cerebral palsy on 7/3/2008
    2nd Treatment on 6/29/2009
    3rd Treatment on 6/02/10

  2. #2
    Join Date
    Aug 2008
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    Default Bill of Rights

    Kristin,
    Made me laugh! Thanks for posting it.
    Dave Snow

  3. #3
    Join Date
    May 2007
    Location
    New Hampshire
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    Default

    As the mother of a special needs child (who is now an adult) I can certainly relate to this bill of rights.
    Still Pioneering
    Had UC treatment April 5th, 2007
    Had autologous treatment March 19, 2010
    Had bone marrow and adipose stem cell treatment (autologous) June 16, 2010

  4. #4

    Default

    WOW that is exactly how I feel it feels good to know that I am not alone in those feelings

    Ava Grace had treatment
    Mexico 05/2008
    Peru 11/2008
    Florida 03/2010

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