home
RSS
April 3rd, 2009
08:51 AM ET

Autism is a journey with many co-pilots

By Phil Riley
CNN Senior Writer

Even if you had months of advance notice and could talk to experts and read books, you wouldn't be ready. Each child is a snowflake, unique. There's no blueprint. You fly by the seat of your pants. And you take co-pilots.

Emma and teacher Lynn Tarnow

When I wrote my blog last year about living with Emma, I had no idea how much I would learn and be touched by the postings of people with autism and those who love people with autism. (learn more about autism)  But when I revisit my own writing, I feel fear, solitude and sadness. Life with Emma is much more.

Emma is generally a joyful 12-year-old girl. She loves her family, wanting us together so much she'll continually ask for absent members. Though speech therapy is still a struggle, Emma has made progress on her goals at school. Credit Lynn, her teacher. Emma still has occasional outbursts, but I’m no longer getting calls to bring her home because she's uncontrollable. Besides maintaining a calm classroom, Lynn has expanded Emma’s curriculum beyond school.

Emma’s community-based activities include supervised shopping trips. She gets a list of simple items that her teachers need, along with their money. She goes to a store, makes the purchases, and then returns to school to deliver the items to the teachers along with their change. It’s a blessing to have a creative educator who has experience with special needs kids. But experience is not always necessary.

Kaloni is Emma’s swimming instructor.  He’s worked with a lot of kids, but Emma’s his first one with autism. Like Lynn, he's relaxed, patient and a cheerleader. Add repetition and familiarity, and you've got a winning formula.  Two examples: Monica and Dr. Cathy.  Monica cuts Emma’s hair. It used to be an event full of squirms and tears. Now Emma sits straight in the chair, smock on, no fussing. It used to take two dental technicians and me to hold Emma down so Dr. Cathy could pry open her mouth. Now she jumps up in the chair and opens her mouth wide when asked. A stunning transformation, even if it did take years.

We’re not out of the woods by a long shot. Emma still would rather not speak, which makes it almost impossible to develop social skills. And she'll soon begin menstruation. She won't be able to understand what's happening to her body. The confusion and pain she'll experience has prompted parental debate over using a drug to prevent the cycle. So we'll face challenges for sure.

But as long as we keep going, and have co-pilots along for the ride, we'll get there.

Have you dealt with the challenges of autism?  We'd like to hear your thoughts. 

Editor's Note: Medical news is a popular but sensitive subject rooted in science. We receive many comments on this blog each day; not all are posted. Our hope is that much will be learned from the sharing of useful information and personal experiences based on the medical and health topics of the blog. We encourage you to focus your comments on those medical and health topics and we appreciate your input. Thank you for your participation.


April 1st, 2008
08:37 AM ET

Navigating Emma's autism

By Phil Riley
CNN Senior Writer

My cellphone rings and I know it's bad news.

Only 8 a.m., but the school nurse needs me to take Emma home.

She's biting and scratching herself, and it's taking two adults to restrain her.

I can't ask Emma why she's so upset. She can't tell me.

ALT TEXT

Emma Riley and her family have been struggling with autism

Emma is 11 years old. She has suffered from autism for a decade. Her family has, too.

It started in the 1990s, still the dark ages for autism.

The pediatrician said not to worry about Emma's development.

The psychologist who diagnosed her said to my wife and me, "Read this book."

It confused and scared us even more.

We've come a long way since then.

So has Emma.

She's more affectionate toward her family, more tolerant of changes in routine.

But challenges continue.

My wife and I've had to fight to get Emma in classrooms where we hoped she would thrive.

It's not always worked out.

Just like social interactions.

Typical kids don't want to hang out with a girl who doesn't share their interests or can't have a conversation.

No going out to a restaurant or church as a family.

Spouses spelling each other is good. Less time together as a couple, not good.

Guilt when you're not there for her brother.

Sleep deprivation.

But what most concerns my wife and me is this: How will Emma get along when she's an adult... or when we are no longer physically able to care for her... or after we're dead?

Recently I took our 14-year-old son, Conor, to a school admissions interview.

Later, he told me they had talked about Emma and he had said, "I've had to help watch out for her."

And Conor was asked how he felt about that.

His answer: "You learn to serve others and not just yourself."

Editor's Note: Medical news is a popular but sensitive subject rooted in science. We receive many comments on this blog each day; not all are posted. Our hope is that much will be learned from the sharing of useful information and personal experiences based on the medical and health topics of the blog. We encourage you to focus your comments on those medical and health topics and we appreciate your input. Thank you for your participation. 

Post by:
Filed under: Autism

Advertisement
About this blog

Get a behind-the-scenes look at the latest stories from CNN Chief Medical Correspondent, Dr. Sanjay Gupta, Senior Medical Correspondent Elizabeth Cohen and the CNN Medical Unit producers. They'll share news and views on health and medical trends - info that will help you take better care of yourself and the people you love.

Advertisement
Advertisement