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.

Developmental Disabilities Isn’t Just in Kansas Anymore

Some parents get to know developmental disabilities (DD) with the force of a tornado.

DD comes roaring in—deafening their dreams, snatching them up off their solid footing, and twisting their sense of conceivable. When they land they are no longer in a black-and-white world of norms. They know they are now in the Technicolor world they had only seen or read about.

Other parents are introduced to DD in relentless stages and elusive milestones. 

Time after time what looks familiar at first becomes the unimaginable. Over and over they get a glimpse into the crystal ball. Again and again, the curtain pulls back, revealing another new normal.  They are muddled, traveling simultaneously through dust bowls and poppy fields.

However parents come to DD, it is a similar place. They are confronted with wizards masquerading as medical experts, spewing jargon with detachment, and ordering tests on diagnosis witch hunts.  They are affronted with stares from those enchanted by curiosity. They ride the horse of a different color.

Parents who have lived long in the world of DD can tell new arrivals: you will cry, you will laugh, you will find your footing again. Along way you will meet friends you might otherwise never have met. You will learn to throw water in the face of fear. You will encounter both flying monkeys and happy little bluebirds.  And regardless of the obstacles, there is a beauty in the world of DD—whether it is black-and-white, Technicolor, or silver. It is not the end of the world, only the rainbow.

Advocacy Series: Exploring Your Inner Advocate

You don’t need a PhD of Advocacy & Care to be an advocate. Just look inward.

You might even be using skills in your day to day life and not even recognized them as transferable talents. By identifying our strengths—and our challenges—we can recognize what we do best and where we need support.  For example, personal strengths could be a diplomatic demeanor, natural leadership abilities, or a positive attitude.  Personal challenges might be organizational skills, public speaking, or a compromised back.

Take inventory of your comfort zone, of all your abilities. Write down answers to the following questions (this is just for you – there is no judge and there will be no grade):

1. Who am I?
2. What am I good at?
3. What are my job skills?
4. What do I like to do?
5. What do I want to learn?
6. What do I avoid?
7. Why?
8. What do I want help with?
9. Who can help me?
10. Where do I find joy?

Page one of becoming an advocate is choosing the kind of advocate you want to be. You decide where you will be the most effective based on your innate and learned capacities. You dictate the action. You write the story. The next step is learning to tell it.

Until then, you take care.

the story of advocacy

 

 

Advocacy Series: Advocacy 101

What is advocacy? Let’s spell it out: advocacy is not a four-letter word (although we may have been frustrated enough to use one). Advocacy and advocates are not something people need to fear.  It is simply being for Something.

Advocacy does not mean you have to burn your bra…or your jock strap.  You don’t have to heft poster board with a magic-marker-message above your head and chant, “Down with (insert antagonist of choice here)” among a sea of protesters, nor do you need to lie down in front of a bulldozer. True, this is advocacy.  But this assertive form of activism is one that has often reached the desperation stage—and admittedly, there have been moments of desperation in my own caregiving days and nights where I considered extreme attention-getting methods.

So what are the different forms of advocacy?

• Legislative – lobbying to legislators to influence public policy.
• Legal – authorized to represent someone in a legal process.
• Mass – large group efforts, such as petitions and demonstrations.
• Social – create awareness or change on behalf of something or someone.
• Self – speaking up for yourself, your particular demographic.

Think of advocacy like a story. Where starts and where it goes is up to you. You choose the characters and decide the setting. Don’t worry about the key element that drives the narrative—conflict. That’s a given or you probably wouldn’t be advocating for/about a Something. If you don’t know where to start, channel your inner Glinda: “It’s always best to start at the beginning.”

Advocacy begins with a passion. What do you feel strongly about? Who do you feel strongly about? What causes you to spend your time, your energy, your money on? What is the philosophy, situation, need, obstacle, frustration, or joy that gets your blood pumping, that massages your heart.  What is your Something?

Call to action. This is when your “I am for…” can’t sit still, can’t be quiet. You feel the need to do something about your Something, to no longer be a bystander, to shed the sense of helplessness and become empowered through action.

Finding your voice’s comfort zone. Shy? You can voice show your support through passive methods: t-shirts, petitions, e-mails, letter writing, awareness bracelets, attendance at events. Outgoing? Any of the above of course, but add advisory committees, boards, meetings with policy makers, testifying, public speaking (stay tuned for a personal account in the Advocate Series: Speaking Of)

Fortunately, the wheel was invented some time ago. While no one has your unique perspective, skill set, or experience, there is a very good chance that there are other people who are advocating for a similar Something. Find them. Pool your energy. Share your stories. Connect with other advocates—there is strength in numbers.

Advocacy training resources:

Disabilities:  The Advocacy Institute has an online webinar. Note that there is a charge, but you can view past presentations for free for “a limited time.”

Autism: Autism SPEAKS has a tool kit download for families and individuals. You will need to fill out a form to get the link.

Medical: Patient Advocacy Resources is a site with links, books, and guides that can point a patient or patient advocate in the right direction for becoming a better partner in health care.

Lions Club Parade with MDS staff

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