RESPECT-Ability

A few weeks ago Marilee and I took the grandkids on our annual summer outing to Lake Quassy Amusement Park in the upper Connecticut countryside. The kids did the rides first: the Wooden Warrior roller coaster, the carousel, the miniature train, etc. Then our picnic lunch of sandwiches, applesauce, chips. At last we headed to the sandy beach on pristine Lake Quassapaug, with its picturesque views. Abby and Maggie immediately ran off to the water park area with its huge waterslides, while Louis and I waded into the refreshing water of the lake.

It’s encouraging that Louis is getting better at following instructions, especially the no-throwing rule. He makes a big splash though. There was no mistaking that he’d arrived. It was reassuring also to realize that the obvious Down syndrome part of Louis was not what commanded attention. His latest trick is a triple flip…under water! Most of the kids couldn’t even manage one. You could see RESPECT written on their faces.

Pretty soon he looked at me with a question: “OK, Poppy?” With a nod from me, he took off for the waterpark. I joined Marilee in the inviting chairs beneath a shade tree. We’d take turns checking on the kids, but from a discreet distance. I like the concept of “practice letting go”, even for grandparents.

Soon a new family arrived and found a spot right near us. The father transferred from his wheelchair to the plastic chaise lounge, a little assist from his wife to lift his legs. He was a paraplegic. Of course, it made me think of my brother Dan who has been a quadriplegic for 46 years now. But aside from a disability, I saw a family. I saw a father with confident strength maneuvering that wheelchair over the sand, kids and mother setting up and chattering quietly.

For an hour or so we shared the shade tree, Marilee and I taking turns at the waterpark.Our neighbors packed up first. The father led the way. But even the best developed upper-body strength could not compete with the beach incline and loose sand. The wheelchair got bogged down. The mother and daughter put down their bags and struggled to push from behind.

There is a thin line between “abling” and “enabling”.

We face this question often in the Down syndrome community. When to help? When not to? I, who had the ability to get up out of my chair, resisted the temptation, questioning my judgement at the same time for not doing so. Others watched. As he rested his arms for the next advance, the nineyear- old came around to the front of the wheelchair. She faced her father and spaced her sandaled feet apart to match the two wheels. Using a shifting motion, she walked backwards, creating two smooth parallel paths to clear the way. He moved forward a few feet, another rest, and so they moved on. An elevated sidewalk loomed ahead.

I got up now to introduce myself and say that I often help my brother Dan on such occasions, and to comment on what a heartwarming, ingenious and inspirational solution his daughter had just devised. Her parents beamed with pride. She smiled as if to say, “It’s nothing, I do stuff like this all the time. He’s my Dad.” Her father cheerfully accepted my assistance and together with the lifeguard’s help, he was safely up on the sidewalk.

Sometimes we all need a little lift up.

My grandson Louis has a very independent streak. Often he declares, “I can do it myself!” Wisely, he realizes there are times when he needs help and will readily accept it. It’s a good formula with an essential ingredient: there is an appropriate system of support.

GiGi’s Playhouse understands appropriate. Down syndrome is not a picnic. There will always be questions and GiGi’s Playhouse is constantly seeking answers. When to help, how to help, when to coach, when to cheer. We are solution oriented. We learn from each other. Children are many times the best instructors. Unencumbered, they have an uncanny ability to not over think. Going backward to go forward? Who would have thought! That father had the additional encouragement of his daughter’s expectant smile. They both gained the respect of all on the beach.

GiGi’s is a place where we celebrate family and ability.

Yes, the focus is on the individual, especially the person with Down syndrome. But when truly experiencing the encompassing environment of the Playhouse, an epiphany occurs. From the founder’s example and throughout the entire organization, right down to the newest volunteer, there is exhibited a sincere intimacy, the bond of family. The dignity of each member is acknowledged.

We pull together at GiGi’s Playhouse. Our doors are open. We invite you to get out of the chair and help make a difference. Stop in, join the family and see how you can “benefit.”

Richard Reilly
The Grandparent Connection