“Presume Competence” – What Does That Mean Exactly?

Emma's Hope Book

When my daughter was first diagnosed at the age of two and a half, presuming competence was not a concept I was ever told about or had heard of.  And even if someone had suggested we do so, I’m not sure I would have fully understood what that meant exactly.  So what does “presume competence” really mean?  And how and why should we carry out a presumption of competence?

In an interview, Douglas Biklen explained:  “Assume that a child has intellectual ability, provide opportunities to be exposed to learning, assume the child wants to learn and assert him or herself in the world.”

A key component to presuming competence is to become aware of the prejudice that currently exists regarding autism and how these ingrained beliefs harm not just our children, but ALL Autistic people.   Like any prejudice, based on layers and layers of misinformation, misperceptions, and misunderstandings, we…

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CAREGIVER ADVICE TOP TEN LIST

(Includes original and reprinted quotes from comedic sages like Dave Barry.)

10. Never under any circumstances take a sleeping pill and a laxative on the same night.

9. Take out the fortune before you eat the cookie.

8. Never lick a steak knife.

7. Advice from a cardiologist: If it tastes good, spit it out.

6. The one word that explains why human beings have not achieved their full potential: meetings.

5. Nobody cares if you can’t dance well, just get up and dance.

4. If you can’t find the milk in the refrigerator, check the cupboard.

3.  Make a checklist for when you finally get a night out: Shoes, keys, wallet, phone, pants.

2. A son calls his mother. Mom how are you. Mom replies. Not too good. I haven’t eaten in 38 days. Replying with concern, the son asks, “what’s the matter mom, are you not feeling well, have you been to the doctor?” Mom replies, not that, “I didn’t want to have my mouth full when you called.”

1. Never put the air freshener next to your hair spray.

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.

He “Could Be Another Lincoln”

People with a developmental disability (DD) need a champion, an iconic figure that encompasses public perception, one that transcends time and political isles: consider the Scarecrow from The Wizard of Oz.

Throughout history people with developmental disabilities have aligned with the Scarecrow. They’ve been perceived as inferior, sub-human, and subject to inhumane treatment, including tied to a stake—although not for utilitarian crop-protection purposes, but to be burned.  A chronology from Teaching for Diversity and Social Justice by Adams, Bell, and Griffin records that through to the 1700s people with DD in many countries were considered evil, possessed. Public policy at the time was torture, burn, or leave to die.

Toward the Age of Enlightenment attitudes and policies shifted slightly. People with DD in the United States had a champion and were upgraded from evil to defective. They had an advocate in Dr. Samuel Gridley Howe, who appropriated money from the Massachusetts legislature in 1848 to teach “idiotic children.” He later founded the Massachusetts School for Idiotic and Feeble-Minded Youth in 1850, believing in their ability to learn.

While Howe did pioneer educational change, he was no Scarecrow—he was not on the receiving side of the fence. He could go only so far in the face of flying monkeys.  These monkeys, including the Nazi regime, practiced methods deemed appropriate for people classified as “defective.” Yet Germany was not the only country who targeted them for sterilization and euthanasia. They may have been the biggest monkeys, but they were followers not leaders in this movement.

The Nazis were guided by the Wicked Witch of the West: The National Eugenics Office in New York.

The National Eugenics Office, a center of human traits and genetic study, presented their study in February, 1914:  “Committee to Study and to Report on the Best Practical Means of Cutting Off the Defective Germ-Plasm in the American Population.” They investigated “all phases of the problem of cutting off the supply of defectives.” They listed “Classifications of the Socially Unfit.” People with DD, identified as The Feeble-minded Class, were first on the list and determined by the committee to be idiots and imbeciles and the “greatest of all eugenical problems.”

Hitler was inspired.

Nazi rule passed German Law for the Prevention of Genetically Diseased Offspring in 1933, implementing sterilization. In the Adams et al. chronology, by 1939—when MGM produced The Wizard of Oz—Hitler was lockstep with 45% of the U.S. who believed in euthanasia for “defective” infants and began Germany’s Euthanasia Program on people with DD, the guinea pigs for selective race:

70,000 adults and 5,000 children put to death during the official phase and over 200,000 killed in total. Children were killed with morphine injections, gassed with cyanide or chemical warfare agents. They were also slowly administered poisons, starved to death, and exposed to cold so that the deaths would appear “natural.”

The United States Holocaust Memorial Museum further describes the transition from elimination of the “unfit” toward racial genocide: “The most extreme measure, the Euthanasia Program, was in itself a rehearsal for Nazi Germany’s broader genocidal policies.”

Edwin Black in his book, “War Against the Weak: Eugenics and America’s Campaign to Create a Master Race,” writes the “lethal chamber” was the “most commonly suggested method of eugenicide.” He also notes doctors and institutions opted out of “organized lethal solutions,” operating in favor of covert techniques such as giving institutionalized patients milk from tubercular cows and other death-by-natural-looking-cause methods.

Neurologist Foster Kennedy encouraged elimination of the “hopelessly unfit.” Under the spell of the Wicked Witch of the West, Kennedy published an article in the American Journal of Psychiatry in 1942, promoting euthanasia of the “feebleminded” as a mercy killings: “Here we may most kindly kill, and have no fear of error.”

Slowly, advocates for people with blindness, mental illness, and physical disabilities—like Jacobus tenBroek founder of the National Federation of the Blind and Professor Timothy Nugent of the University of Illinois—rose up. They fostered programs and legislation that brought disabilities out of obscurity. Developmental disabilities, however, stayed in the shadow of other disabilities for years, a sub category. Some states in the 50s preferred they stay out of sight: “prohibiting persons ‘diseased, maimed, mutilated, or in any [way] deformed so as to be an unsightly or disgusting object’ from appearing in public.”

Then from 1954 to 1960, legislation journeyed down the civil rights road, beginning with Brown v. Board of Education and Social Security Amendments. A storm was brewing.

The White House fell in on the witch in 1961 and out stepped John F. Kennedy. JFK implemented the President’s Panel on Mental Retardation—a beginning that fundamentally challenged the institutional status quo. The world up to this point had never seen an advocate for people with developmental disabilities like JFK. He was intimately familiar with the challenges and the abilities of people with DD. For him there was “no place like home,” and home, community, is where he believed all people belonged.

Since JFK’s time there have been individuals and parent lead grassroots efforts and groups such as The Arc who have been instrumental in systemic change—hard fought battles against public perception and public policy. There have been heroes of specific diagnosis like Temple Grandin for Autism. Still, as sympathetic as JFK was, there has never been a universally accepted champion, an empathetic one that embodied the misjudged, mistreated, mistaken essence of people with developmental disabilities like the Scarecrow.

Certainly times have changed for the better. Labels have transcended with perception and treatment from evil to idiotic to defective to retards to entitled. People with DD and their caregivers are now much less victims of institutions than they are of bureaucracy, budget cuts, and political warfare: Individual with Disabilities Education Act (IDEA) noncompliance battles; health and economic losses on unsupported family caregivers; 300,000 eligible people with DD on waitlists for Medicaid services with vague wait times of five to twenty years.

People with DD are eclipsed in the Medicaid conversations, a subgroup yet again. According advocacy nonprofit organizations like The Arc, people with developmental disabilities are “still in the shadows.” Sprout films about and by people with DD dedicate their mission to “making the invisible visible.” Meanwhile, mega-profit corporation COKE prints “you retard” on their product caps and selectively excludes this minority in their “diversity” commercial.

People with developmental disabilities need a high-profile champion. They need a recognized celebrity like Michael J. Fox for Parkinson’s and Elizabeth Taylor for AIDS. They need a nonpartisan pilot of their balloon: the Scarecrow. They also need Professor Marvel to reach in his little black bag and give congress a brain, courage, and a heart so that the elected power-that-be eliminate the Medicaid Home and Community Base Services (HCBS) waiting lists.

People with developmental disabilities need a voice that will be heard, seen, and respected.  After all they have been through, they deserve it.

Caregivers: Sharing the Care (part 1)

Do you ever feel that you’re in a state of suspended animation?

No matter how many commonalities caregivers have, in the early hours of the day or the late hours of the night when your loved ones need bathed, fed, dressed, toileted, calmed,  cared for, you are pretty much alone. When they need help getting to the doctor, going through the bills, taking medication, you’ve been pretty much by yourself. I know. I was there for nineteen years.

Even though Caregiver Action Network  statistics show “More than 65 million people, 29% of the U.S. population, provide care for a chronically ill, disabled or aged family member or friend during any given year,” as indicated in a 2009 report,  a Caregiver.com article by Kathy Bosworth notes that the majority of caregivers  are  “going it alone.”

“The stress of going it alone is dangerous to your health,” National Council of Certified Dementia Practitioners states in their Understanding Caregiver Stress Article.

Professor Marvel and Dorothy

That means we’re it—unless we find, ask, or pull assistance instead of a rabbit out of Professor Marvel’s hat. 

My assistance came in the form of Development Homes, a group home in North Dakota. Katie and I jumped into the tornado of change, left husband/father back in Colorado, and landed in Midwest-land, otherwise known as Grand Forks. My good witch of the north wasn’t Glinda, it was Tanya—Katie’s nurse at Development Homes, someone who took Katie’s health and best interest under her wings.

Transitioning from living at home to living in a group home for Katie was an adventure. It was more interesting, more stimulating, more consistent in medical care. It was a horse of a different color and she began to thrive—slept through the night, fewer doctor’s visits, and more magical mastering of day to day challenges.

I broke out in hives.

Trusting others with the care of a loved one is scarier than a pack of flying monkeys, whether it’s for an evening, a weekend, or longer. The emerald lining, for me, was that I went from primary caregiver to being part of a team of caregivers. Still, the very idea of sharing the care in of itself can sound insurmountable.

It seems like more work than it’s worth—additional stress. There is one obstacle in particular that I had, and have heard from others, that keep us from reaching out: Who.

Who do you trust? Nobody can do this as well as you, right?  Valid statement. But since cloning is out, for now the best solution is training.

Stay tuned for sharing the care tools…

 

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

Advocacy Series: Everybody’s Got Something

Advocacy begins with a Something. 

We all have a Something, a story. We all have a circumstance that challenges our hearts, our health, our happiness. This is how cliches such as “In everyone’s life a little rain must fall,” and “God doesn’t put anything on your shoulders He (She) thinks you can’t handle,”—this is how these conventions, these pep talks, become cliches.  They are universal beliefs and often doled out by the well intentioned ad nauseam.

There is an event, an illness, a challenge, a disability in each of our lives, or our loved one’s, that sweeps us away from our intended appointment with “normal” and into foreign landscapes. Often without warning, without training, without preparation our paths pivot, sending us careening into the unknown. Things that happen to other people have happened to us. Stares come our way. We become intimate with vulnerability.

Dizzy at first and with unstable footing, we can’t stand still. Restless. Helpless. Frustrated.  But human nature, gut reaction, is survival.

Breathe in, Breath out.

Moment to moment. One day at a time, we chant in our hearts.  We glance into the past at what if, but fact cannot be altered into fantasy no matter how strong the desire or denial. We face forward. The inescapable truth of the future hits between the ribs.

Breath in, Breath out.

Our shoulders hunch, flinch, upon the impact of sympathetic pats on the back, accompanied by universal beliefs voiced with aim to sooth and strengthen. The words give the spirit resolve, even company. We are not alone.

Breath in, Breath out.

The chin lifts.  The sensation of passive victimization fades, and in its place active realization seeps in, an empowering resolve: the need to do something about our Something.

What is your Something?