“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.

katie & dad 21 birthday day

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.

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