[Ditzzy]

I saw this on another health board and had to share it with you.

A Bill of Rights For Parents of Kids With Special Needs

We, the parents, in order to form a more perfect union, establish justice, insure 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 be seen for who they are as individuals, not as labels or diagnoses.

* We have a 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 be just 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 have 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 a 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 ***.

* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our child’s disabilities.

* 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 the 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 a 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.

[stacyp]

That is so the truth. Thank you for posting.... I feel the nagging need to forward that to my MIL just so she "gets what ticks me off about her" sometimes. She wants to gauge Luke's mental abilities with his physical features/characteristics..... "His Down syndrome features aren't as strong as some so I think he's going to be just fine" G.E.T..... A.... F.R.E.A.K.I.N.G..... G.R.I.P......L.A.D.Y.... We won't know for awhile how functioning he will be but come on, it will be the best he can do. We will not dwell on it & just be thankful he has blessed us.

Maybe I will just print this, roll it up & smack her with it......
j/k......

[Mod-quietsong]

LOL Stacy. I get that all the time too. "Well, he looks so great, he's going to be just fine!"

[docsmomma]

I get told "He doesn't LOOK sick, he LOOKS soooo healthy." and "he's so happy, are you SURE he's sick?" Sometimes I want to scream "hello people, you can't always see the challenges he faces, and chemo does not always cause kids to be bald, puffy or skin and bones or anything noticable!"

[stacyp]

Some people really have no clue....

[mrshowdy]

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



This one is the one that sticks out the most to be right now. AMEN to this one for sure

[Daisyfields]

* We have a right to trust our instincts about our kids and realize that experts don't always know best.
~THANK YOU!!!!

* 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.
~AMEN!!!

* 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.
~It's about time... so sick of the constant bragging... I know, you're child's perfect!

* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.
~I often want to just be a mom & have fun...no doc apts, no therapies, nothing...

* We have a right to react to people’s ignorance in whatever way we feel necessary.
~Yeah... this is on the top for me...people always saying stupid things, trying to diagnose MY child when they're not parents themselves, their not doctors & their rude remarks about how NORMAL Cooper looks...


* We have a right to go through the grieving process and realize we may never quite be "over it."
~Yes...sometimes we need to grieve & we need to be allowed to cry or ask "why?" instead of accepting it like the "welcome to Holland" poem/story.


* 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.
~Thankfully I am not the only one tired & needing an excuse every now & then.

* We have a right to have yet more Pinot Grigio
~AMEN, again....

* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.
~Just did that w/ our Neuro...some docs just don't get it & never will.

* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.
~Sometimes we NEED to gripe & complain, it's therapeutic when you have others who truly understand.

* 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.
~QUALITY is key... I refused pre-k for Cooper recently b/c I knew, the care wouldn't be one-on-one & wouldn't be quality for him, it would have hurt him more than help.

* We have a right to push, push and push some more to make sure our children are treated fairly by the world.
~Couldn't be better said.