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Saturday, June 27, 2009

Bill of Rights for Parents of Kids With Special Needs

I'm totally stealing this from Ellen, but it's ok because I asked permission. I found myself nodding my head at so many of these and just wanted to share it here too.

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 butt.
* 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 children’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.
(Compiled in honor of her little boy, Max, and all of our beautiful children, on June 17, 2009.)

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Cheri @ Blog This Mom! said...

I love this.

Sue said...

Here here Michelle. I know Kayla's special needs are not the same as your Kayla's, but so many of them apply to us as well. My "favorite" is the "I don't know how you do it". I get that ALL the time!!!

Linda said...

I'm going to post this on my blog. Hope that's okay. It's too good not to share.

Annie said...

I want to post it too, so many of these ring true.

Mom24 said...

This is really good. I am struck though by how many of these things are exactly what we want for our normal ability children too. They all get labeled, judged and limited, of course, I do realize it's very, very different for those with special needs. Thanks for posting these.

Erin said...

Can I post it too? It's pretty amazing and hits home pretty well.

Omaha Mama said...

And push and push and push.

I hope to never anger a parent. It's a goal of mine. No one knows a person like their parents do.

This is a great list.
I know how you do it. Every parent does what they need to do for their kids, whether it's what they had planned to do or not. I hope that as time goes on things get even better, smoother, and sweeter. Imagine days when Ms. Kayla can stand up for herself (coming soon). Watch out world!

Katy and Landon said...

I haven't checked here in so long! I'm overdue to have baby #2 and I'm sitting here just waiting for it to all start!

Anyway...a HUGE AMEN to the 2nd Bill of Rights:
"We have a right to trust our instincts about our kids and realize that experts don't always know best."

We just went through a horrific experience thanks to a military doctor who exerted his authority over us and didn't trust our judgement and expertise in regards to our son - this one really hits home for me now and I will never give the time of day to any "expert" that doesn't recognize that though I'm not a medical expert, I'm an EXPERT when it comes to my son.

Karly said...

I love that. Thank you for sharing!

The Girls' Mommy said...

Love it.

Jeanette said...


Karen said...

That. Was. Awesome. Mind if I steal it as well?

Heather Hladish said...

That was just awesome. =) I write for the GiGi's Playhouse McHenry blog (www.mcgigis.blogspot.com) Could I possibly repost this there?

Ellen said...
This comment has been removed by the author.
Ellen said...

Oops, sorry. That was just a note to say I'd be pleased if any of you wanted to post the Bill of Rights I put together.