The Mother at the Swings

This was shared with me on the Down Syndrome Listserve. Beautifully written.

The Mother at the Swings
by Vicki Forman

It's a Sunday afternoon. My nine-year-old daughter Josie is at home
drawing cartoons with my husband and I'm swinging my six-year-old son
Evan at the park. Evan laughs and giggles and with each wide arc of
the swing, his smile grows ever larger. The mother next to me smiles
herself and says, "Boy, he really loves that, doesn't he? I mean,
kids just love to swing, don't they?"

Yes, I think, kids do love to swing. But the reason my son loves to
swing isn't the same reason her daughter, in the swing next to us,
loves to swing. My son loves to swing because he is blind and non-
verbal, because he has what is termed "sensory integration
dysfunction" and requires enhanced "vestibular input." Swinging gives
my son the kind of stimulation other kids, those who can see and talk
and run and ride a bike, get by simply being and doing.

And, yes, he also loves to swing because all children love to swing.

I smile back at this mother and I swing Evan higher and he laughs
louder, his squeals of delight growing bigger with every push.

"He really loves to go high," the mother at the swings says. "He's
not afraid at all."

"He's not afraid because he can't see," I say. "He has no idea how
high he's swinging."

"Well, he must have other ways of knowing," she says. "Because he
definitely loves it."

My son was born at twenty-three weeks gestation, weighing only a
pound. His twin sister died four days after birth when we removed her
from life support. Evan was hospitalized for six months and came home
blind, with feeding difficulties, chronic lung disease and global
developmental delays. Soon after that, he developed a serious seizure
disorder and was on medication until his fourth birthday. He did not
walk until he was five, still does not eat anything other than pureed
baby food and formula from a cup, and has only a word or two --
variations on "muh muh" -- which he uses indiscriminately for "more"
or "mama" or "open." I have watched my friends' newborns become
toddlers and school-age children who can walk and laugh and talk and
read, all while my son continues to function at the level of a two-
year-old.

And yes, he has a beautiful laugh and a beautiful smile which grow
only louder and wider on the swings.

When Evan was still in the hospital, a social worker gave us a
handout, a road map for the potential reactions of friends and family
members to our new status as parents of a super preemie. Potential
support people came divided, according to the handouts, into the
following categories: the rocks, the wanna-be-theres, and the
gingerbread men. It warned us that people we might think were "rocks"
could unexpectedly turn out to be "gingerbread men." Just like the
story, they run, run as fast as they can from you when they hear of
your baby's birth.

I quickly found that the guide was right, that I was supported by
only one or two rocks, and that the rest of my friends and family
members had become gingerbread men. As Evan's disabilities became
more obvious, after he left the hospital and in the time that
followed, I found new rocks and said goodbye to the gingerbread men.
And I found a new category for the characters in the social worker's
handout: the mother at the swings.

The mother at the swings wants to know. It's why she makes her
observations, and why she pretends there is nothing different,
nothing dissimilar about her child and mine. All kids love to swing.
The mother at the swings would like for me to tell her what it's
like, how my son is different, and how he is the same. She wants to
know about the cane he uses, and the challenges of having a non-
verbal child, and how I manage to understand my son and communicate.
She'd like to ask, What does his future look like? And How are you
with all this?

She wants to know but she doesn't know how to ask. And so she tells
me that all kids love to swing.

~

It has taken me years to know what to say to the mother at the
swings, and how to say it. To reveal the truth, graciously. To let
her in and help her understand. To tell her that yes, all children
love to swing, and my son loves to swing and the reasons are both the
same and different. That it's hard to watch her daughter, with her
indelible eye contact and winning smile, and not mourn for what my
son can't do. That some days my grief over my son is stronger than my
love.

It has taken me even longer to appreciate the mother at the swings,
to know that she and I have more in common than I once thought. To
know that her curiosity is a mother's curiosity, one borne out of
love and tenderness and a desire to understand a child, my son, one
who happens to be different. That she will listen and sympathize when
I offer my observations. That her compassion and thoughtfulness mean
she will take the knowledge I share and use it to understand other
mothers like myself, some of whom could be her neighbor, her cousin,
her sister, her friend. And, finally, that she wants to know so that
she can teach her own child, who also loves to swing, how to embrace
and treasure what makes us all different. And the same