Tuesday, August 20, 2013

Run, Run, and Run On

Yes I am running again this year with Team Up with Autism Speaks in the Allstate Boston Half.  I've been asked when I'll stop running but I don't plan on stopping. Boy Wonder will always have autism. His sisters will always have a brother with autism.  I don't run for a cure. We are long past the stage where I use words like cure or recovery. Boy Wonder has autism. He is profoundly needs life time care autistic.

So why do I keep running? Why do I stand up at Board of Ed meetings and say no this isn't right? Because my little boy's life still has potential, meaning and value. He has taught me what unconditional love for your child means. He taught me the joy is in the small moments of achievements. That the nots and the nevers aren't necessarily true.

I run because more children will be diagnosed this year with autism than with any other type of lifelong disability. When Boy Wonder was diagnosed 6 long/short, all mixed together years ago, the rate was 1 in 150. The rate now is closer to 1 in 50. I wonder what it will be if I/We don't do something now when Diva and Sweet Baby Girl are thinking about having children.

I run for the special educators who love our kids, for the services Boy Wonder will need when he ages out of the education system because the waiting lists for those services are endless, I run to know why my boy has autism so his sisters can make their choices with more knowledge than I did. I run for his sisters (and all the other siblings) who love their brother and know how to make him laugh and smile despite being only three and five years of age.

I run because I can because there's nothing I wouldn't do for my three babies.

Cause we are
We are shining stars
We are invincible
We are who we are
On our darkest day
When we're miles away
So we'll come
We will find our way home

If you're lost and alone

Or you're sinking like a stone
Carry on
May your past be the sound
Of your feet upon the ground
Carry on 

Carry on by Fun 

Ed's Note: You can click the Team Up with Autism Speaks to donate or you can click the Allstate Boston Half to register to run.

Tuesday, August 6, 2013

But for the Grace of God

When Boy Wonder was diagnosed with Classic Autism just under 4 years ago, the rate was 1 in 150 kids had autism. Then it was 1 in 110 kids. The current rate is believed to be anywhere between 1 in 88 or 1 in 50 kids have some type of Autism Spectrum Disorder.  We are your "But for the Grace of God" story. 

We hear what you say about our kids. We hear what you say when we aren't there to listen when you speak about our kids. And it always eventually gets back to us what you say when we aren't there. To your kids, " Be nice to Johnny. He has special needs" in your Florence Nightingale voice yet then you complain that your kids were placed in the inclusive classroom with our kids.

You complain about what it costs to educate our kids out of one side of your mouth while looking at us with eyes full of pity while rubbing our arm and asking in your most sorrowful voice,"How's Sally doing?".  Then you stand up at a Board of Education meeting and ask if (insert extracurricular activity of your choice here) was cut because of what it costs to educate those special needs kids and furthermore, that our kids are holding your kids back academically.

We hear you and we see you. More importantly, your kids see you. They see your hypocrisy and your double standards.

I'll let you in on a little secret. I'm no saint. I didn't chose to adopt a special needs child. Most of those who have kids with special needs didn't chose this path. It was thrust upon us by some random act of God, genetics or luck of the draw. I know I checked off the smart and perfect child who will never give me a moment's worry. He or she would grow up, go to college,  and have a happy, successful and independent life.

Let me ask you a question. How would you feel if I said well since my kid can't participate in (insert extracurricular activity of your choice here) I'd like it removed from the school. It's not fair to have (insert extracurricular activity of your choice here) since my kid can't and most likely will never participate. That's not fair now is it?

Federal Law protects Boy Wonder. It mandates that he is given a Free Appropriate Public Education. Your child is also entitled to a Free Appropriate Public Education.

So what does your child really learn by having children like ours in their classrooms? Hopefully, they are learning empathy, compassion and an appreciation for other people's differences. They are learning tolerance and acceptance. Aren't these all things that will serve your kids well when they are adults? Yet you want to take that away from them. I bet you think you are all these things but you're not. Your words and deeds have proved otherwise, yet it's not too late for you to change and be a positive example for your kids. Autism and other developmental and learning disabilities are NOT contagious but bigotry, ignorance and intolerance are very contagious.