Jul 27, 2009

A Bill of Rights For Parents of Kids With Special Needs

I got this from Sarah. The original great post was by Ellen from her blog - To The Max. It is superb and well written. A sum up on what we feel for being a parent to special kid(s). I would like to share you the feelings as well:

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 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 the beautiful children on June 17, 2009).

For a printable copy, e-mail LoveThatMax@gmail.com.

On Syafiah, here are few photos of her recently:

Yeah... I've the right not to hardly push her to be someone else. I've the right to treat her just like any other kids too. For me - she's still a cute smart girl!!


Anonymous said...

I do love this post from Ellen!

Love the new photos of Syafiah too!

Have trouble commenting on your site lately, not sure what is going on but it tries to close the whole site everytime I try to read any of your entries!

This one has worked tho!!

nadnye said...

suka tgk photo Syafiah nie.. cute jea..
tukar lay out ker...

Anonymous said...

beautiful voices from the heart.

special or average kids..they are anak kita...tak salah kita nak sayang dia sebanyak mana..tak salah kita nak treat dia special camne.

yg penting dia tau kita sayang dia...voice dari hati ibu itu utk anaknye, dia sorang aje tau how meaningful it is, kan?

suealeen said...

What kinda internet browser are you using? Sometimes it depends on the browser itself.

Anyway, I was bored with the previous layout. It has changed now.

Sekali sudah tukarrr laaa...

Mama-Miya a.k.a MiuMiu a.k.a "Jedi Hopeful":
And mom can be very protective too, right? Tak pahamlah makcik dengan orang buang anak ni. If they know how beautiful their kids are, they won't throw them away.

cutie85 said...

Syafiah is so amazing child.. she's co cute.. solute to her mom's :p. She will become an amazing person in the future.. InshaAllah..

ashra said...

love this post and this cute lil' girl.
To her mom,u being such a wonderful mother!..
May Allah bless you.

Asz said...

sue ... baru perasan kan entry nih ... luv it so much ... most of them out there x paham apa yg kita lalui and sadly they like to judge us when we do/did something ...

psst ... may i copy this entry & put it in my blog ... i thougt of sharing this to my frens ...


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