Wednesday, February 5, 2014

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.

Friday, January 31, 2014


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?

Wednesday, January 22, 2014

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.