By Beth Quinn

We are Gammy and Gamps, my husband and I.

It was up to our second grandchild to so name us. Our first grandchild, Sam, doesn’t speak. At the age of six, he’s never said Mommy or Daddy. He’s never called me  anything. It’s more than possible he never will.

Lest you think this is a sad tale, however, I hasten to assure you otherwise. Yes, autism is bear to wrestle with. And yes, Sam’s parents – my son Sean and his wife Melissa – have  known despair. I am no Pollyanna, and there’s no such thing as sugar-coating in our family.

Even so, this is not a sad tale.

I first wrote about Sam when he was three years old and had just been diagnosed with an extremely rare disorder called Bannayan Riley Ruvalcaba Syndrome. What a name, huh? It took three researchers to discover it, and they all put their names to it.

Sam is like a unicorn. He’s one of only a handful of people in the United States to have this particular batch of missing chromosomal material. As a result, he has an issue or two:

Skeletal abnormalities (club feet, which must be periodically casted to keep them on the straight and narrow – Sam doesn’t mind the casts); a tendency toward polyps so that he must have a colonoscopy at regular intervals (he does mind this); low muscle tone (he has no idea he works harder than others to overcome gravity); some mild retardation (maybe – we’re not sure); food allergies (he can’t eat Ritz Bits, his very favorite food, along with a host of other foods that he doesn’t care for anyway); and the autism.

That’s a summary of what he – and his parents – cope with, but it is not a summary of who he is. Who they are. There are so many stories I could tell to let you know the real Sam and Sean and Melissa. I will tell just one.

Last fall Sean told me he planned to teach Sam how to ski. They live in the Berkshires, near Jiminy Peak, and Sean has been an avid skier all of his life. Teaching a child of his own to ski has long been part of his life plan.

“But Sam hates the cold,” I reminded him. “And he won’t wear mittens or a hat. And – remember? – he hates new things.”

“Um hmm,” said Sean. “That’s true. We’ll see.”

Sean’s goals were modest. On the first day out, his plan was to help Sam get into his gear (anyone who has ever skied knows how much trouble THAT is for an adult, let alone an autistic five-year-old who isn’t much of a communicator), then take his gear off, have a snack (he was still eating Ritz Bits last winter), then go home.

Melissa found mittens online that went all the way up to his armpits in hopes he would keep them on. Sean had him practice wearing a helmet in preparation for the big day of going to the ski lodge to have a snack.

And so they did. Only thing is, that first day didn’t turn out at all like Sean expected. It happens that Jiminy Peak hosts a program called Stride – a group of volunteers who show up to help handicapped kids and adults enjoy sports. In this case, skiing.

One of the Stride volunteers saw Sam eating his Ritz Bits in the lodge and suggested they go outside. Sean got Sam geared up again. Then Sean and the volunteer walked Sam up a small hill. At the top, they each took hold of the end of a pole and they draped Sam’s arms over it.

And Sam skied down the little hill between his dad and the volunteer. And he smiled, then he grinned, then he laughed. And then he did it again. And again. And again. He was outside, in the cold air that he hates, for 2½ hours that day.

My son took Sam skiing three times a week all last winter. Sam learned how to get on and off the chair lift on his own, with just a bit of help. He learned how to snowplow. He learned how to stop. He learned not to run into people and to stay out of other skiers’ way.

Sam learned how to ski. He skied when it was freezing cold. He skied in the rain. He skied until there was no more snow left on the hill.

Good thing, too. Sean always wanted his son to be a skier. And when the Stride program was featured on the Albany news station in March, it was Sam and Sean who represented them.

Meantime, while Sam and Sean were off skiing, Melissa was home trying to figure out how to make some hypo-allergenic food for Sam and disguise it as Chicken and Stars, which is pretty much the only food besides Ritz Bits that Sam actually enjoys.

Oh yeah, and did I mention she was also taking care of two new additions to

the family – extremely premature twin boys who were born in the one-pound range last August? Do these two people know how to have fun or what??!

I’m happy to report that the twins are coming along just fine. And I’m equally happy to report that Sam often pats them on the head and smiles sweetly at them. Beyond that, he’s just happy to get the heck out of the house with his dad for this season’s sport, which is swimming.

He’s now doggie paddling all over the place. If Mom and the twins happen to go along and are in the water too, he paddles over to pat each of the babies on the head and smile his sweet smile at them.

Melissa told me a few weeks ago that she’s a different person because of Sam. “I’m not the person I expected to be when Sean and I first got married,” she said. “We aren’t living happily ever after, but we’re living happily. I like who I am better than the person I might have been, and a lot of it is because of Sam.”

When I worked for the newspaper, I occasionally heard from a reader who talked about his daughter and autistic grandchild. His daughter was his hero, he told me. He said it often, and his voice always held pride and happiness when he spoke of her.

I now know how he felt. The world doesn’t offer the mentally challenged a lot of breaks, but Sam has caught the two most important breaks any child could hope for – his parents.

As for those long mittens, well, Sam never did develop a liking for them and wouldn’t keep them on, so Sean bought a roll of duct tape. When it’s time to gear up, Sam hands Sean the mittens and holds out his arms while Sean puts them on him.

Then Sam hands his father the duct tape and holds out his arms to let Sean tape the mittens to his jacket.

Sam’s a little quirky, but they work things out.

Beth can be reached at beth@zestoforange.com.

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