BUDDY

Buddy was my pal. Tall and stocky for his 6+ years. Tight black curls and smooth, sweet cheeks.

Utterly adorable. Profoundly uncommunicative.

We’d sit together for hours.

I’d read, he’d rock. I’d sing, he’d shriek. I’d try to hug him, he’d hug himself. Then rock.

I was a soon-to-be college grad, interning for six months with children who had neurodevelopmental disorders; delayed cognitive development and language skills, impaired social interaction and communication skills.

Buddy was unlike anyone I had ever met. Those first few weeks we spent together in the spring of 1986, he never responded to me. Frustrated and concerned, I began to dread walking into that clinic (that's code for I had no idea what I was doing).

Within a few short weeks, I perceived that labeling a child 'autistic' was synonymous with giving up on him. The profoundly autistic child would remain unreachable; lost in an unfocused world that the rest of us could not comprehend or alter.

Imagine my joy when - weeks into our ‘friendship’ - Buddy looked me in the eye for half a second. The very next visit, he held my gaze and did not look away.  

I smiled at him, he smiled back.  I stroked his arm. He let me.

Buddy was communicating! I rushed to find my supervisor and tell her the news of Buddy’s break-out.

“It’s sweet that you’re looking out for Buddy," Supervisor said.  "But the Fiddz will visit, and Buddy won’t look at them the way he looks at you. He’ll be labeled, and that will be that.”

I had no idea what Fiddz were, and I wasn’t about to broadcast my ignorance. Naïve and determined, I decided that hell might freeze over, but I was not going to let Buddy be labeled.

We worked hours, days, weeks, for our few precious moments of communication.  

The Fiddz arrived. Dressed in suits and significance, they moved quickly from room to room, carrying clipboards and sharpened pencils.  

When his time was finally up, Buddy was seated next to me. I leaned over and whispered, “That man with the brown beard is coming to say hi, Buddy! When he says hello to you, look him straight in the eye and say hello right back.”

Buddy squeezed my hand. He didn’t smile. Or speak. The psychologist talked to him, asked a few questions, then marked a sheet on his clipboard and disappeared.

Supervisor delivered the news. “This is not a reflection of your efforts,” she warned. “The doctor cannot possibly recreate in two minutes what we work months to achieve.”

“Then why don't you and your staff do the labeling?" I asked.

“Because the doctors have the PhDs.” (Fiddz!)

Buddy was transferred out of the clinic soon after that visit. I've never forgotten my frustration and dismay over that child's diagnosis.

I've never forgotten the touch of his small hand so tightly gripping mine.

1986: 1- 2 per 10,000 children in the US was diagnosed with autism.

Fast forward to 2012: 1 in 88 children in the US has autism or a related disorder. 

Among boys, the rate of autism spectrum disorders is now 1 in 54, almost five times that of girls, which is 1 in 252.

The estimates released today by the Centers for Disease Control and Prevention represent an overall increase of 25 percent since the last analysis in 2006, and a near-doubling of the reported rate in 2002.

It's staggering.

Without question, the diagnostic spectrum is broader, and awareness is greater than ever before, accounting for about half the reported increase in diagnoses. Still, Mark Roithmayr, president of the research and advocacy group Autism Speaks has determined this is a "national emergency and it's time for a national strategy."

The Centers for Disease Control and Prevention Director Thomas Frieden agrees. "One thing the data tells us with certainty - there are many children and families who need help," he says.

Thankfully, being labeled "autistic" is now a ticket to receiving support, services and resources for an autistic child. In 2012, the National Institutes of Health will invest $169 million in autism research to improve screening and diagnosis, develop effective services and resources for families, identify potential risk factors in the environment that may cause the disorder, and test potential treatments.

It might be encouraging, if it wasn't so devastating.

I know, because I have another special buddy in my life.

Tall and strong for his 8+ years. Big brown eyes and smooth, sweet cheeks.

He climbs on my lap, content to cuddle. Occasionally he'll allow a sneaked kiss or two. His giggles delight, and he will joyfully march around the basement 47 times, pulling the red wagon and singing his favorite Wiggles' song. 

My little buddy's mom is my youngest sister.

If you're looking for a hero, she's your gal.

Fact: I've spent many years of motherhood feeling like a never-ending-on-call-doc in an inner city triage unit.

Fact: It's been a cake-walk compared to what I imagine Youngest Sis endures as she cares for her son and daughter every day.

The emotional and physical exhaustion that comes with parenting an autistic child; staying on top of his schooling, hospital, specialist and doctors' visits, therapies, paperwork, and insurance.

The schedule, meals, routines that must never be altered.

 The toll on relationships.

The nagging concern that a treatment or diagnosis may be missed in time to help.

The anger or heartache when her child is stared at or mocked for being different.

The energy and graciousness required to cheer on the successes of nieces, nephews, and friends' kids, even as she wonders if college, marriage, children and independence will ever be a possibility for her child.

The fear of what might happen to her son if she can no longer care for him.

Youngest Sis works day after day, striving to be positive, patient and grateful for the many blessings in her life.  She and her husband - equally devoted - rarely ask for help. Offers for  spa-day or date-night are turned down so they can remain a constant, loving and stable presence in their son's life.

She is the definition of Unconditional Love.

Judging by today's statistics from the CDC, there are millions of moms, husbands and kids just like my sister and her family.

They need our help. Our collective rally cry.

If you have a used IPAD, consider donating it to the special education department of your local school or an agency like Boces or Autistic Services that helps the disabled.

Support Autism Awareness in your community, with programs like Light it Up Blue on April 2nd.

Best of all, say something. 

An offer to run errands, play with siblings, or even kind words of support and encouragement mean the world to families whose demanding, and oftentimes disheartening work never lets up.

Statistics suggest that if you don't yet know someone struggling with an autistic child, you will in the near future.

Someone you might love like a sister.

And if you don't yet know a child with autism, you will in the near future.

He or she is a gift.

Just like my little buddies.

QUING Hereby Decrees: One woman's struggle is another's inspiration.