Invisible Again

In October of 2010, I wrote about autism being the invisible disability.  I wrote about how our children have no physical markers that signal to the world the way their brains are just wired differently. While autism awareness is more widespread today (since I wrote the original post the statistics for autism have shockingly gone from 1 in 110 to 1 in 50), the supports and services our children need are still hard fought for and sometimes denied. Services vary greatly from school district to school district and state to state. Some of us desperately need these supports for our children. It is the only way they can thrive and reach their full potential. Sometimes, it's the only way to keep them and other family members safe. We would like our children to be in the news for positive things. Not because they wandered away like Avonte Oquendo, where the school personnel failed to keep him safe.  Or the parents who murder their children because they see no other way out after being denied help and services time and time again. (I absolutely do not condone murdering your child which is why there are no links to media stories.)

So we as the parents are invisible until something horrific happens to one of our children.  Then the media and the public pay attention.  Then there is judgment, public outcries for justice and finger pointing. How much suffering and how many tragedies could be avoided if the people and system who are designed to help children like ours actually worked? What if, instead of judging us after the tragedy, you put your hand out and helped to prevent the tragedy. Society is reciprocal. At some point all of us will need help from one another.  No one's life is free from difficulties.

If you are the friend of someone with a special needs child, you offering to watch the child for an hour, bringing a meal, calling with a funny joke or just being a shoulder to cry on could make a big difference. I am fortunate that I have a strong support system in place. Some friends with typical kids and a wonderful network of special needs moms and dads who will come if I call and say for today I can not face this alone. I, in turn, have the same offer on stand by for them as well.

The tragedies need to stop. They can be stopped with support, love and compassion.  The autism rate has soared in the 6 years since Boy Wonder's diagnosis.  Autism crosses every race, religion and socioeconomic barrier. It does not and will not discriminate. We could be you some day and we will be here for you.

Hi

I always talk about how we waited for Boy Wonder to talk. Getting him to talk was difficult and mostly him just repeating back what was said to him.  His progress over the last two years regarding speech has been phenomenal. The little boy we were told would never communicate can talk . Is it conversational? Well no but he can tell us what he wants. He can say hi to people. In fact, it's one of his favorite things to do.

Every morning, I hear him fling his bedroom door open and he comes running down the hall. He bursts into my room and jumps in my bed with me. He presses his forehead against mine and says, "Hi!" and that is the very best way to start my day. Now if I could just get him to bring me coffee in bed. A girl can dream, can't she?

Snow Day Playlist (Where is Summer?)

Yay There's No School (Xanax Time)

No You Can't Wear Shorts with Your Snow Boots (Put On Your Damn Snow Pants)

I've Got My Snow Pants On! (Mommy I Have To Pee)

Snow Boots On the Wrong Feet (Accident Waiting to Happen)

30 Minutes to Get Dressed (5 Minutes Outside)

Delayed Opening Would Have Worked (Superintendent's A Moron)

We Only Throw Snowballs at Daddy (Mommy Will Kick Your Butt)

Make Us Hot Chocolate (So We Can Dump It In the Garbage)

Mommy's Our Short Order Cook (Look At Our Maid Cook)

I Need Dora's Map (Looking for My Sanity)

I Saw Mommy Kissing the Bus Driver (Day after Snow Day)

4  PM is the New Bedtime (Benadryl Darts)

I Love My Kids (Especially When They Are At School)

Humor is the only way to stay sane when you've had way more time with your kids than you should have had since mid-December. Now if you'll excuse me I'm going to go make a drink. It's 5 o'clock somewhere.

The Goal is Happy

"When I was 5 years old, 

my mother always told me that happiness 

was the key to life. 

When I went to school, 

they asked me what I wanted to be when I grew up. 

I wrote down ‘happy’. 

They told me I didn’t understand the assignment, 

and I told them they didn’t understand life.”

― John Lennon

I always said that when I had children that I wanted them to be happy. I didn't care if they were trash collectors as long as they at the end of the day they could honestly say they were happy. By no means does this mean I do not or will not encourage them to reach their full potential. I will not, however, force them to do things just because they look good to other people.  Forcing kids to do something because you feel it makes you look like a good parent, to me, is kind of the opposite of a good parent. I'm not talking about making them eat vegetables or go to sleep early, the daily nitty gritty of parenting. I am not talking about making a commitment and then walking away when they change their mind. I'm referring to letting a child find out who they really are without undue pressure to be daddy's football player or mommy's ballerina.  Sometimes, a child's interest is very different than a parent's dream of what their child would be like when they were born. And sometimes you have a child who is not a child you ever imagined when you decided to become a parent.

6 years ago today, Boy Wonder was diagnosed with severe autism. It was devastating and life changing. I felt then, and sometimes still do, feel ill equipped and vastly under qualified to parent  a child with a disability. But BW has taught me so much. He turned the world right side up. He made me more patient (mostly), far far less judgemental and he showed me that proving people wrong is really really fun. 

I may doubt my ability to make the right choices for him when he can't tell me what he wants or why he is upset but I do know for the most part that my boy is a happy kid. So while we may have a bunch of IEP goals unmet and life skills we have been working on for years at home, I do know that my biggest goal for my son is met daily, he is HAPPY and in the end that's all I ever really want for him and his sisters. 

Eight Years

Eight years of

love and joy

smiles and giggles

tears and struggles

late nights and early mornings

learning and growing

turning nevers and can'ts into yes he can

inspiring and silly

miracles so very many miracles

and a whispery deep little voice that says,

"I love you to you"

Happy 8th Birthday to the Guy who stole my heart!

You are love personified.

 

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.

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.