FW: There's no such thing as the perfect child....(excellent)

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From: Down Syndrome Treatment

[mailto:Down Syndrome Treatment ] On Behalf Of KathyR

Sent: Friday, May 20, 2011 9:58 AM

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Down Syndrome Treatment ;

DownSyndromeIndianaparents ; InFormingLife ;

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Subject: There's no such thing as the perfect

child....(excellent)

http://www.theglobeandmail.com/life/facts-and-arguments/theres-no-such-thing

-as-the-perfect-child/article1470176/

A word to the wise to those of you dying to ask a parent of a child with

Down syndrome, spina bifida or an open neural tube condition if they had

prenatal testing: Don't do it. Bite your tongue. Shut up. Swallow it.

Because what you are really asking us is, " Why didn't you abort your child? "

And, similarly, " Why is this child even alive right now? "

Believe me, justifying the very existence of our beloved children hurts. It

will not gain you any brownie points on the playground or when I'm writing

up my

<http://www.theglobeandmail.com/life/facts-and-arguments/theres-no-such-thin

g-as-the-perfect-child/article1470176/> Christmas card list.

A while back, funny things were happening to my son, who happens to have

Down syndrome, in his preschool class.

went to his neighbourhood preschool, not to a special-ed site. I

believe that inclusion in his community is the best thing for him. As his

mother, I make decisions based on what is best for him. Other families make

other decisions for their children. I'm not into judging since I got thrown

off my pedestal of judgment when was born six years ago. But inclusion

is the choice for us.

The problem with inclusion isn't with the children. It is with a select few

parents, who grew up in the era of special-education schools and

segregation. They are scared of my kid. And they pass that fear on to their

children.

A kid came up to , and shouted in his face, " Why is different? "

(For some reason, little kids like to shout when they talk.)

Fair enough. We are all different, kid. Some kids have glasses. Some kids

have dark skin. Some kids have earrings. See what I mean? This is easy

enough to explain to children.

But then another kid said, " My mom says I have to be nice to because

he is different. "

Now, this is a comment coming from a parent, through a kid. We don't want

your faux sympathy, folks. We want our kid to be accepted as part of a

diverse classroom. With different skin colours, genders and abilities. Is a

kid going to shout in another kid's face, " My mom says I have to be nice to

ny because he's black " ? I hope not.

But intellectual disabilities or developmental delays or mental differences

are the last stance for discrimination.

I sat down and wrote a nice letter to the preschool parents. The teacher,

who has been nothing but welcoming of over the past two years, happily

handed it out.

The letter explained and his family. How he is the same as other kids.

How he likes construction trucks and swimming. How we are all different in

this world. Read between the lines and what I'm saying is that there is no

such thing as perfect.

After the day we handed out the letter, a mom stopped me in the playground

on my way to my car. She chit-chatted a bit, then said she was surprised by

the letter. I said I was hoping if I explained a bit about it would

help foster understanding. I was thinking she was the one who told her kid

she had to be nice to because he's different.

Then she got to her point. She really wanted to know why I didn't get

prenatal testing.

I looked at her, puzzled. It seemed like a funny question to ask, and

staggeringly inappropriate to boot, but I had been asked it before. It was

in a mom-and-baby yoga class when was only four months old. The sting

of it then had not lessened almost five years later.

I thought, rationally, " Here's your chance to educate - I am an ambassador

against ignorance. " I answered her cheerily, " Well, testing wouldn't have

changed my pregnancy outcome, so I turned the testing down. "

Out of the corner of my eye, I could see my car in sight. It was my escape

hatch, but it was several metres away. I had to immediately extract myself

from this conversation because I felt as if I was floating above my own

body.

I said my (pleasant) goodbyes and motored to my vehicle as fast as I could

in the winter snow. I slid into the driver's seat, slumped over the steering

wheel and burst into tears. I'm not much of a crier. But it was as if I had

been slapped.

I continued crying all morning in parking lots in between running errands. I

cried in the coffee shop drive-through and in the grocery store lineup. I

had to bite my lip to prevent the tears from falling down my face in public.

Why do I have to justify my son's very existence? Why isn't it okay that

he's alive? What are you afraid of?

For those of us who have children whose extra chromosomes could have been

detected prenatally, it is a long and lonely road. We get asked these

questions. We get frantic calls from friends who are considering

amniocentesis because their triple-screen prenatal test has come back

elevated. The whole genetic testing thing is fraught for parents who have

kids with disabilities.

One day it won't just be " us. " With the clever mapping of genes, there may

be tests for all the lovely imperfections of life that make us human. All in

the quest for the blue-ribbon baby.

What I should have asked the mom in the playground was, " What if your

daughter was in a car accident tomorrow and had a brain injury? Would you

love her any less? "

When you can answer those questions, I will answer your questions.

Sue Robins lives in Edmonton.