Wednesday, April 6, 2011

Autism Awareness


Most of you don't know that I have a nephew with Autism. So for Awareness Wednesday this month I will be doing a Q & A with my sister, who has first hand knowledge. I can't think of a better person to ask about Autism and the world inside than someone who lives with it every day.

When did you first notice signs of autism?
Zach was four months old when I noticed that he didn't make sounds or follow objects with his eyes. He didn't jump at loud noises. He didn't respond to anything. He didn't cry. I remember thinking he was either deaf or autistic.

What were the signs? 
As he got older it was more noticeable. He played along side other kids but not really with them.

How old was he when he was officially diagnosed?
Because Zach is high functioning, we didn't get an official diagnosis until he was 11 and a half years old. He was diagnosed with ADHD and High Functioning Autism.

What kind of testing did he go through for his diagnosis?
We saw a pediatric neuro-psychologist for a diagnosis. He went through 18 hours of testing. There were different tests. Some tested his intelligence, some his ability to plan what will come next, how to put things in order/groups, social situations, and still others.

Was the diagnosis hard for you to accept?
I know that it is hard for many parents to accept that something is different. I already knew. Getting a diagnosis simply told me what it was so I could learn how to treat it. So not really. The pediatrician and I were pretty sure that was the diagnosis we would get.

Was it hard for him to accept?
I am a firm believer that knowledge is power. Zach is fully aware of all of his diagnosis. He researched on the internet to learn more. He did fine after the research. He said that it explained a lot of things and his behaviors.

A really good poem for the parent of ANY special needs child:


Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


  1. That was a beautiful poem.

  2. I love your sister's attitude towards your nephew's autism! I bet she's an amazing girl!

  3. I totally agree about knowledge being power. She seems to be handling it with great mom skills!

  4. I love that poem/story.
    I think your sis sounds a lot like my bff. She said it was hard to sign on the dotted line with his diagnosis, but she looked at it like this: she's acknowledging it so that he can have the SUPPORT and help he will need in life.

  5. Great post, knowledge IS power.

    Hugs & love,

  6. Wonderful post! I learned some things. I have a few friends with children living with autism. Your sister sounds like a very strong and conscious mother.