What's in a Name?

What's in a name? That which we call Autism or Down Syndrome or Cerebral Palsy by any other name is still not a disease – because you can’t catch it from us.

For example:

• The “A-word”: Autism. An overly simple definition of autism is a brain defect that causes problems in a person's ability to socialize, speak, and focus.
  
• The “D-word”: Down Syndrome. A condition named after a doctor (Dr John Langdon Down) for babies born with an extra chromosome (47 instead of 46).
  
• The “CP-word”: Cerebral Palsy. Simply defined, a combination of a sane mind with a disobedient body.

These names and many others come under the general category of “Developmental Disability,” meaning a mental or physical disability (such as the above) arising before adulthood and usually lasting throughout life.

How did we get it – this thing called developmental disability?
Some of us got it from Mom’s or Dad’s abnormal genes. Some of us got it because Mom drank alcohol or got an infection like rubella in the weeks before we were born. Others didn’t get enough oxygen during Mom’s labor or during birth. Some of us were just fine – until the day we got whooping cough, measles, or meningitis. Maybe we nearly starved to death or maybe we didn’t get to the doctor in time. Maybe we were exposed to poisons like lead or mercury. And maybe – just maybe – we are blind or deaf as well.

So clearly, our problem is not a disease. You can’t catch it from us. It is not a type of mental illness, like depression. There is no cure for it. But we can learn to do many things. It just takes us more time and effort than our “normal” friends.

There may be some things we’ll never learn, but our teachers here are amazing. Today they taught us the “T-word”: TEAMWORK.

Choices

My friends are allowed to choose. They are almost always allowed to choose. It helps them feel like they have some power and control over what they do. It’s a step in growing up. Everything isn’t planned for them. Making good choices is a skill they will use for the rest of their lives.

Our teachers decide ahead of time what choices they will allow my friends to make. They offer choices only when my friends will truly be allowed to choose. They select two or three things and let a friend choose from them such as:

…“Which book would you like to look at?”
…“Would you like to paint or use crayons today?”
…“Would you like a plain banana or a chocolate-covered banana?" (See above photo.)

How else do they give my friends choices?

…They keep toys on low shelves, so my friends can choose what they want.
…They keep books where my friends can reach them.
…They give my friends free play time to choose and play what they want.





Giving my friends choices also helps them feel good about themselves, their parents, and their teachers…especially when it’s time to go to the NC State Fair!

(YAAAAAAYYY!)






A while back I chose to be a friend to my friends at Frankie Lemmon. One of my inspirations was a man named Dick Parsons. Dick passed away this week. When Dick was eighty years old, he chose to volunteer at Fred Olds Elementary School, where the children and staff became the light of his life for ten years! Farewell, Dick. It was good to know you.

Cheese Day

Can you have too much fun? Absolutely! But that's a daily event at the Frankie Lemmon School. Last week, we learned where milk comes from. Today we learned you can make cheese from it.

Ain't we havin' fun now?!

Drums

We like to sing a lot. And we like to play drums.

Why do we sing and play drums?

…I can't see. But I like the sound of the drum…the feel of it. It makes me smile. I can sing and play drums even before I learn to speak. It is something I can do. It makes the pain go away.

…I have autism. I don't know what to say to people. My life is one of involuntary silence. But when I sing with the others or play drums with the others, I can participate like the others. I can express myself like the others. I can behave properly like the others. I hope I'm learning some of these skills for life. Then I can go where life's paths lead me.

…I have special needs and I find that growing up can be slow and difficult. But when I sing and play drums in class I feel more at home. I can think better. And I think it makes it easier for all my other therapies to become more effective. It makes it easier for my teachers and my parents to teach me. They won't let me quit.

…I was born with severe brain damage. But singing or playing the drums in class forces my brain to follow the tempo and melody. It makes me want to sing and move with the music. Best of all—the good part of my brain is learning how to bypass the damaged part. I'm getting more "normal" every day!


That’s why we like to sing a lot. And that’s why we like to play drums.

The New ABCs

Do you remember how you learned your ABC's? You may have started in Kindergarten—or even earlier if you had glasses with pink frames! Don’t believe me? Ask my friend Ellie. She is only four and she can already navigate through IPAD’s Interactive Alphabet. It even has sound effects! Go ahead—click on her picture yourself. Give it your best shot because I know you can do it!


—I’ll wait.

Meanwhile, I’ll join my friends as we again rehearse our melodrama/operetta Inside a Barn in the Country. We make our own sound effects as we identify various farm animals and the sounds that they make. Today we held colorful pictures of our favorite characters as we sang along with the rebus text.

Speaking of sound effects and pictures, I learned today that our class now has a Flip™ video camera. It is small and compact and easy to use. I think back to the days when my bigger-than-a-breadbox video camera used VHS tapes bigger than a book. Nowadays, by cracky, you can put your video camera in your pocketbook. And kids can shoot videos of themselves and their friends, publish them on YouTube and even share them via email!

These gadgets are wonderful as well as fun. But they can be complicated. I remember some of Robert Fulghum’s simple wisdom in his famous book All I Really Need to Know I Learned in Kindergarten:


—Share everything.
—Play fair.
—Don't hit people.
—Warm cookies and cold milk are good for you.

—Take a nap every afternoon.

To these I would add:
Life is always better when you wear pink-framed glasses!