Life with Coco and Gigi... and Jack-Jack too!

Life as a Mom, A Homesteader, A Blogger and A Wife.

Bill of Rights for Kids with special needs

I stole this from a friend who stole this from a friend (:D) just had to share. I had tears in my eyes as I read through these.

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 ass.

* 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.

4 comments:

RocketGrl 4:45 PM  

Julie from A Little Pregnant once posted a list of favored comments for loss, I've love to see your list of favored comments to a parent of a special needs kid.
- How should we express our concern for your needs? and your sanity? Yes, more Pinot Grigio is a good start. :o)

Anonymous 12:19 PM  

Hello! I am a long time lurker as we were pregnant and had miscarriages and got pregnant again at the same time.

I love to read your post and to learn about being a mom to a child with disabilities.

I do have a question for you and wanted your opinion.

When my child is out and about at playgrounds, etc. and I am talking with another parent and their child does have a disability, what do I do?

Obviously I treat the child with respect and dignity that is deserved. However, do I say nothing to the mom and ignore the differences, do I ask questions about the child in a friendly manner, or what? I do not want to be disrespectful or put the child/mom in an awkward position.

I am just curious of your thoughts, as sometimes I think parents without children with disabilities just don't know what to do around parents with children with disabilities.

MrsSpock 7:39 PM  

I love this post. In fact, I will be sending this link to a friend. Thank you.

Brigid 10:20 PM  

This is an awesome list, and you are an awesome woman and mom. I learn so much from reading your blogs and want you to know I think about you guys all the time. I can't wait until I can see those little girls and play with them again. You guys are such a special family and I love following what is going on with you all, the good, the bad and the ugly, but especially the cute moments you catch on video. All I see in those moments are 2 happy, loved and beautiful little miracles; you can see their hearts and yours just shining through.

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Over 8 years we have struggled through 3 IUI's, 6 rounds of IVF, several RE's, hundreds of appointments and the loss of three little angels. Now we find ourselves the proud parents of two perfect little girls and a wonderful little boy!!

Both of our girls struggle with some disabilities but that won't keep us down. Each day has it's own brand of insanity but we love it. Most days I am more monkey wrangler than mother but I do the best I can. Todays goal - getting to tomorrow.

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