Yo soy La Lay

adventures in family, faith, and Down syndrome

Not settling

on February 12, 2017

I have been told recently that life isn’t fair.

This news doesn’t come as much of a surprise to me.  Once I moved beyond the age of oh, 14 or so, I never expected it to be.

The context of this statement, though, is what rattled me.  As I’m sure you can guess, the circumstances revolved around this little girl:

(when was the last time your face showed that much joy?)

You see, the political climate being what it is these days, I found myself in a debate of sorts with a dear family member about school choice and the impact that it has on children with disabilities.

Throughout our conversation, I was told about the great “special needs schools” that my daughter could attend.  Schools that “specialize” in her “special needs.”  Schools that are “specially equipped” to “handle” the “special care” of our “special girl.”

Dude.  Stop.

I tried to get someone to explain to me why it is that Girlfriend needs all this “special stuff,” most especially when research indicates time and time again that what is actually best for her is to be educated in a typical classroom alongside her typical peers.

(I mean, if you ask me, while she may be hard to understand, she’s kind of a standard three-year-old.)

The only answer that I got, really, was that life isn’t fair.  Basically, we just got dealt a shitty hand, so good luck.  Good thing there are those “special schools.”

I bowed out of the conversation there.

Here’s the thing.  

Down syndrome isn’t the reason that life is unfair for Tessa. It’s not shitty.  People are.  Down syndrome is not some awful life experience to overcome, but the belief that it is awful, is a problem. 

The problem is that no, life isn’t fair, but that doesn’t excuse us from the responsibility to make it better, not just for ourselves, but for anyone.

Our fight to keep Tessa in a regular classroom is very much about her, but it’s also about any other child who walks through the door of that school building – or any building.

(It’s also about the law, though that pesky little thing seems to be lost on a lot of people these days.)

It’s about changing perceptions about what people need.

Not pity. Acceptance.

Not charity. Kindness.

Not escorting off into some “special place” for their “special needs.”  Inclusion.

It hits you right in the gut when the fight is so close to home.  It is bad enough when perfect strangers are the culprit, but let’s be honest, it’s a thousand times more discouraging when people who know and love our sweet girl still don’t get it.  

We’re not settling for special.


5 responses to “Not settling

  1. Mary Fraser says:

    Maggie-My name is Mary Fraser my son Chris went through St. John’s with John. I love your Blog. I am a Special Education Teacher. This year I have a student who has vision and hearing impairments in Gen Ed Kindergarten. It has been a challenge at times but it has been so great for this Kindergarten Class…I could go on and on…love your blog!!!!!

  2. Marge Anderson says:

    Thanks Maggie! The world is better because Tessa is in it. Tessa is Special as any 3 year old is special. She has a story to tell and lesson to impart; a lesson of love and joy and patience and acceptance. What I find unsettling is that so many people don’t realize that by placing people in categories and isolating them that WE as a society lose.

  3. Oneinamillion says:

    You are so right. Life is unfair, but it’s not because of Down Syndrome, it’s because the world refuses to accept and include and acknowledge. You should be able to send Tessa to whatever school you choose and that shouldn’t be a battle. For me, I wanted to send Eva to a special school, but Tessa is her own person and the decisions for her will look very different.
    I’m sorry you’re having to have these kinds of conversations with people who are close to you. I know the feeling very well of realising you see your child so very differently from even those closest to you.

  4. Oma says:

    Keep on momma bear! Acceptance on all levels for all people!

  5. Joanne says:

    Amen, Mama. Just last week the coordinator at the girl’s daycare asked me if I was going to put her into “special needs” school – and seemed surprised that I would integrate her into “regular” school. WTF? And why not? She’s in a typical setting now, and doing well…why would I not want that for her moving forward?

    People. SMH

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