Developmental Disability Awareness Month 2014

What did I know about developmental disabilities (DD)—then mental retardation—in 1986? Nothing. I didn’t give people with DD a second thought. They were in the peripheral of day to day in my daily encounters.

It was not like they were invisible, though. Across First Street, our kitty-corner neighbor’s adult son who lived at home had “something.” I didn’t know what and I didn’t care. I just knew his bike was bigger than mine and I wanted to ride it. He let me. I crashed. Then the girl who was riding right behind me ran over my nose. Ironic?

Fast forward a through a transient life of sports, nightlife, and Aspen to marriage, pregnancy, and the first of two alpha-fetoprotein tests. The first came back abnormal. I pulled out my giant book of baby information and looked up the implications: Down syndrome.  I flipped back and forth through the large pages of the book, familiarizing myself with the disability through watery vision. The second test came back normal. Even so, the experience foreshadowed my initiation into Requiem for Normal.

I put it out of my mind. Healthy thoughts, healthy baby…until the six month well baby check-up. All was not well. I pulled my head up out of the sand.

At first I saw only glimpses of disability, still not looking it wholly in the small eyes, low brow, developmentally delayed face. But neurologists and therapists and hospitals and IFSPs and IEPs have a way of prying open your eyes, even without a diagnosis. I didn’t blink. I kept them open and stared right back at awareness.

Would I have been mindful of people with developmental disabilities were it not for full immersion?

I seriously doubt it. I am not the guardian angel type. I am not like the many we have met through these years in my awareness journey—guardian angels masquerading as ordinary people, people who spend their time, their education, their mental and physical resources caring for my now twenty-seven year old daughter. I am nothing special. I am middle-of-the road, Midwestern, Jane Doe average. It is my daughter who is special, who is brave, trusting, and deserves to be seen.

I acknowledge that Everybody’s Got Something. I only ask that you are better and bigger than I was and lift your head from your own challenges to see without staring who people with developmental disabilities really are: friends, family, patients, students, teachers, neighbors, employees.

Thank you.

Beneath the Surface of Normal: A Mythical Memior

Anomaly

I am swimming, skimming the jeweled plane of the ocean with indifference toward what lies beneath. My arms reach and pull and lift against the dense drag of salty resistance. Alternately, my hands drip glistening beads of water, arc into the air, and submerge again stroking, stroking forward. With firm hip and level knee, I kick—an unconscious rhythm propelling me until my fingers brush against something below the surface. It is leathery, like the belly of a shark.

My heart races.  I draw my knees into my chest and glance toward shore. It is dry and distant and I am far out in the heaving womb of the sea. There is no where to run.

I plunge my face underwater to meet the future head-first. My eyes prickle when I open them up to a world I can survive in only beyond one breath of my fantasies. The aqua marine world fades into midnight dreamscape.  I scan this saturated horizon, spinning slowly. No jaws, no fins, no twelve-foot predators stalk me from the deep. It is oddly peaceful. Then in the din of sandy distance, I glimpse her.

She’s bewitching and strangely familiar. I squint past the conventional schools of trumpet fish and herds of sea horses into unthinkable. She appears an inhabitant of a mythical world where Neptune’s children wear oyster pearls about their wrists and curl up near the roots of seaweed. I am captivated, unable to turn away.  I cannot help but follow her deeper into the depths to see her more closely.

She turns to me as a sunken shaft of sunlight illuminates her form.

She is amphibian in nature, kindred to a human. Her eyes look into mine with a gaze both indistinct and intimate. She begins to sing a melody my ear regards—one that taps a note of awakening in my blood, a music without lyrics, a siren’s tune that echoes through the tides and implants itself within my gut. I am rapt.  Suddenly, realization stings me like a jelly fish. I know her.

Stale inhalation burns my lungs.  I exhale, choke, gulp in lungfuls of gritty water. I need air.  Bubbles race me to the surface.  I flail about coughing, searching for a life preserver.  She cannot be my fate.  I want “normal,” I cry out.  Save me from a life beneath its surface.

Hers is not the kind of life a mother seeks–it is one that finds.

To be severed from the firm predictability land offers to live with her comes at first with a queasy sense of disorientation, of loss.  But flesh is flesh, so I grow scales. I become a mermaid, learn to breathe underwater, and realize that normal is the anomaly. I found the sunken treasure, turned the skeleton key,  and discovered that Everybody’s Got Something.

A boat nor a fisherman need not rescue me from my future.  I willingly kick my tail and follow my child adorned with special needs into the murky unknown, because she is my rib and I am hers.

After all, I have always loved the water.

THE NOTION OF A SCARECROW

Not everyone is meant to wear

Ruby slippers. Not everywhere

Does a road of yellow brick lead

To an Emerald City. You need

Not be a wizard to see past

 ifs and onlys into the vast

plains where a scarecrow – all her ends

Hanging askew – her sense contends:

Yes, straw sticks out my stitched in teeth

And yes, my hat sinks down beneath

My ears.  And yes, I cannot run –

Muscles flexing like everyone

Else. When the crow lands on my frock,

When songs of crickets pick and mock

And think a scarecrow void of thought

Know – Oh Joy, rapture, I think not.

“I’ve got a brain!”

Quest for the Holy Label

Katie does not have the luxury of a label. She has a “group of conditions” with “not otherwise specified” or “pervasive and profound developmental disorder” characteristics. Try putting a label on that. Even the labeling Powers That Be in government and advocacy are inconsistent in their official terminology. They are at different evolutionary levels: Mental Retardation; Developmental Disabilities (DD); Intellectual/Developmental Disabilities.

undiagnosed

Neither does Katie have distinct physical characteristics related to a label—children with Down Syndrome have recognizable facial features and look like they are part of one big family. And she is not included in a .org support community like  Children with Autism, Down Syndrome, Fragile X, Prader –Willi Syndrome, or Angelman Syndrome. There is not a publicly recognized, organized movement with colored puzzle pieces, millions of followers on Facebook, and celebrity driven fundraisers or awareness walks for people who have an unspecified developmental disability.

The label that comes to mind most quickly for the general public is antiquated, inaccurate, and derogatory: retarded. One word labels are easier to digest. They are snapshots, blinks, for people who are not immersed in the culture.

When Katie was little I wanted to know what community she fit into. So we left our round (kitchen) table and went on the Quest for the Holy Label. After years of geneticists and lab tests and examinations we still had a group of conditions without a name. The only label we had was one they needed for education and insurance coding: profound developmental disabilities.

Now, I will tell you that not knowing a name for your child’s challenges, their Something, can create blissful ignorance.  No one tells you your infant’s likelihood of a lifetime of limited capabilities: will always wear diapers; need someone to dress her, feed her, bath her; will never learn to read, or speak, say “goodnight” or “what’s for supper” or “can I borrow the car” (yeah, we can probably all live without that last one).

Katie is now an adult. In our Quest for the Holy Label we learned that she doesn’t need a label. Her challenges–moderate, profound, or unspecified—are simply part of being Katie, they are characteristics, like her curly dark hair and infectious smile