World Autism Awareness Day - You're Never Too Young To Spread Awareness

I've spent the last three months going back and forth to the Kennedy Center.  We're having The Boy reevaluated.  And the process, has sparked lots of old feelings. 

In May it will be 4 years since The Boy's diagnosis.  And I think back to the April before the diagnosis - when I was waiting for the results of all the evaluations.  When I was hoping for the best while preparing for the worst.  When almost everyone was telling I was worrying for nothing.  When The Husband was certain there was nothing 'wrong.'  I didn't even know April was Autism Awareness Month or that April 2nd, was World Autism Awareness Day. 

Had I known what autism was, I wouldn't have waited so long.  I would have gone with my gut feeling and had The Boy evaluated months before he turned two years old.

But that's neither here nor there.  I can't turn back the clock.  I don't care about what caused autism.  And have no desire to cure The Boy. 

What I do care about and what I can do - is spread awareness.  I believe Autism Awareness and Acceptance needs to start at an early age.  Children who are taught to understand and accept autism, will grow into adults who understand and accept.

Some groups consider autism to be an epidemic - I don't believe that's true.  The real epidemic is ignorance.  And ignorance can be easily cured with knowledge.  No special studies or research needed.      

I'd like to share something that was sent to me by my FB friend Jessica - a fellow warrior mom.  Jessica has three beautiful children.  Emilia, Charlie & Stella.  Charlie has autism.  And Emilia was asked to give a speech at her school - in front of 400 children.  When Jessica shared Emilia's speech with me on Saturday - I was so incredibly moved and I knew I had to share it here.

Autism Awareness is Monday, April 2nd. Autism is a mental disorder that many kids, including my brother have. They aren't gross, or weird, or contagious. They are just like us, but have a hard time learning or communicating. Many people say that autism is a puzzle. They say this because autism is hard to figure out. The color blue represents autism, like pink represents breast cancer. Did you know that the Empire State Building lights up blue in honor of Autism Awareness? Lots of people are working to find a cure for autism. As I said before, Monday is Autism Awareness day, and I would like everyone in the school to wear blue on Monday to represent autism awareness.

Always

Unique

Totally

Intelligent

Sometimes
Mysterious

Emilia's speech will impact the way her classmates think about autism.  Not even 10 years old, and she's making a difference.  I wish there were more Emilia's in the world. 

I've learned so much being The Boy's mother.  Our children can teach us so much, all we need to do is listen.    

Charlie & Emilia - Stella's in the background



Today is World Autism Awareness Day.  But it's also Autism Awareness MONTH.  So if you didn't wear your blue today - you have the rest of the month to show your support.          

"Retarded"

Watched this YouTube video yesterday and was so moved by it.  I cringe whenever I hear this word.  I am always amazed by how often this word is used by adults, teenagers, parents, parents of special needs children (something I don't understand), teachers, therapists, attorneys, people with college degrees and by people without.  It's as common as "OMG," a word tossed out casually in conversation.  And it has to stop.    


This young woman's message to the world is simple, poignant and powerful.  If this doesn't change a person's mindset, then I don't know what will.   

Through the Looking Glass: Like Two Ships Passing in the Night

written by: Marj Hatzell, otherwise know on the Internets as The Domestic Goddess. 

Getting my boys to interact is like putting pantyhose on a goat, as my mother-in-law says. In terms of functioning and autism, they couldn't be further apart. Luke, who is currently ten-and-one-twelfth (That is very important, that one twelfth, and is much different than JUST TEN) is in the higher-functioning range with a diagnosis of PDD-NOSE or Asperger's depending on the weather that day and which doctor we are seeing. Ian, who turned eight just after Christmas with very little fanfare (just the way he likes it) is considered severely-to-profoundly affected. While Luke is above grade level, attends his neighborhood elementary school and quite verbal (and reads the dictionary! FOR FUN!), Ian is largely non-verbal. When we hear a word out of Ian, it's usually, “NO.” When asked to pick something up or, “Uh-oh!” when he is throwing a glass down the stairs. Because, you know, tossing it down to the basement is an accidental. Ooookay. Sure.

They couldn't be more different even though I was due on the same day in December (count back nine months, Irish people, and you can figure it out), are two years apart and they were nearly identical in terms of development before the age of two. One day Luke began to speak. Ian never did. We'd hear a word once in a while, like “SH*T” when mommy dropped a chicken (he said it for three hours. Awesomesauce) or “Choo-choo.” while watching Thomas. For the nine millionth time. But that's it.  And Luke? Let's just say he isn't reticent. No, I think they have a term for this. Diarrhea of the mouth? Jabber Jaws? INCESSANT CHATTER ALL DAY AND NIGHT? Yeah. That.

The toughest part about raising two boys with autism (and ADHD, OCD and a variety of other acronyms) is that getting them to communicate with us is difficult enough. Adults? No problem! But other kids? Each other? Nearly impossible. They might as well be the North Pole and the South Pole. They are like two ships passing in the night. A glimmer of recognition once in a while but don't expect them to warn you about that iceberg you're about to hit. And we all know what happens when you hit an iceberg. Leo DiCaprio drowns. OH NOES!

So. Where was I? Titanic? Disaster? Oh, right! Interaction! We're basically raising two only-children. Or roommates who work different shifts. Ian obviously works nights because he's up every freaking night. But playing together? It can happen. If we orchestrate it. Look at each other? If we say, “IAN. LOOK AT LUKE.” Circles of communication? HAHAHA! You're so funny! But we try. And we'll keep trying.  A friend once gave me an awesome suggestion. She said, “Don't get them things when they ask for them. Make their sibling get it instead! Forced interaction!”  And it works. They will go to one another now if we're not readily available. So, progress. I'll take it in any form.

We know something is working. One night I was in tears talking to Luke because he was so sweet. When I went in to tuck him in, he asked me what would happen to Ian when we died. Luke was confident he'd go to college and MOVE RIGHT BACK IN, MOM. He knew he'd live on his own someday. But Ian? Grim reality. I explained the concepts of group homes, independent living situations and the like. He wasn't happy about that. He was quiet for a moment and said, “Don't worry Mom. You and Dad don't have to worry. I will take care of Ian forever. We'll be just fine.”

Yup. They sure will. 

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Marj Hatzell, otherwise known as The Domestic Goddess, is a Domestic Engineer, Total Babe and SAHM to two boys with autism, ADHD, OCD and a variety of other acronyms. She was a band geek in high school, lives vicariously through computers and prefers dogs to people, which means she has STELLAR social skills.

Her writing has also been featured in  The Stir, 5 Minutes for Special Needs, Thinking Person's Guide to Autism and of course, her very own blog, thedgoddess.com.