Friday, July 10, 2009

Adaptations for some but not for others

Reality shows are hot. Reality shows about families who are unique are really hot. Reality shows fascinate me. Matt and Amy crack me up sometimes. I often wonder how Jon and Kate or the Duggars would be different with a severely autistic child among their broods. But I don't want to muse about that today. I have something different on my mind. There's a new show on TLC called "The Little Couple" that follows a newlywed little people couple. I've managed to catch a couple of episodes recently.

One half of The Little Couple is the wife. Jen Arnold amazes me. She's a highly trained, highly specialized pediatrician. She has never let her height slow her down. She faces the same challenges day after day after day, and she chuckles her way through them with fun and grace.

I watch her and remind myself that I could learn a LOT from her positive attitude. (Do her challenges ever become too big, too loud, too heavy, too much, I wonder?)

I let my mind wander to the differences between the challenges she faces and the challenges individuals on the autism spectrum face and at why my attitude may be different from hers.

She is short by the world's standards. Very short. Three feet two inches tall short according to an internet search. Door handles, tables and chairs, countertops, cash registers, toilets, sinks, pedicure chairs are all designed for folks of average height.

And everywhere she goes, at least on the TV show, the average height people of the world seem happy to accomodate her challenges.

Removing the chair pad from the pedicure chair to lower her feet into the pedicure soak is not only a simple accommodation, but is easy for the average height world to figure out. Bringing her a booster seat at a salon for a hair cut or a restaurant for a meal is another easy accommodation.

What if she went to the salon and was spoken to harshly? "What's wrong with you? You're too short for our place! Didn't your mother feed you? Go home! Don't come back until you've grown a couple of feet!"

What? Make HER change something about HERself before she is allowed to join the rest of us??? The idea seems ridiculous.

But it happens -- maybe not to Jen Arnold and little people, but to individuals with developmental delays and invisible challenges.

Most autism families whom I know have multiple stories to tell about horrible experiences in public when a child on the autism spectrum has had a challenge in public. I've had strangers tell me to spank my child, suggest that I don't discipline her, stare during a meltdown but not offer to help in any way, you name it, I've experienced it.

A huge topic on internet discussion boards for parents of autistic children is autism-friendly businesses. Which local dentist "gets" autism? Which doctor? What restaurants? What churches? Does anyone routinely use visual programs or schedules? Which businesses have the "booster seats" for children like ours?

(Seems I wasn't the only one having a difficult day, yesterday. Read HERE, and HERE, and HERE and you'll see what I mean.)

Children with autism are excluded from general ed at school, are left out at church, are ignored on the playground. Instead of "bringing them a booster seat", society doesn't know what to do, and the answer seems to be to judge and blame the parents and sentence and punish the child. No one asks the question: Is there something we can do to create an environment where everyone can join us, where everyone has a role, where everyone can be an active participant? What "booster seats" do we need?

Clinics, organizations and non-profits spring up and provide programs for individuals w/ autism, but they mostly don't include the rest of the family.

Seems like it's always an "either/or" kind of thing with autism. We do activities with the NT sibs and leave the kid w/ autism out, or we do an autism activity and leave the rest of us out.

Where are the inclusive accommodations and programs for families who live with the challenges of invisible disabilities like autism? *shrug* I dunno.

Autism is not as obvious as dwarfism. Autism is just as real as dwarfism.

Accommodations for autism can sometimes be as simple as accommodations for a little person, but they are not as obvious as a booster seat at a restaurant for an adult who can't reach the table top.

But society tends to accommodate one and judge the other. And base the individuals's right to accomomodations on low effort and low cost.

And I am trying to get myself out of the frustrating funk of "what should be's" and back into the "what is's" and make the world a better place for all of us.

Suggestions welcome.

In the meantime, I want some of Jen Arnold's humor and grace to rub off on me. I just love to watch her! She's one of my new heroes.


Lisa said...

All I can say is a hearty "Amen!" How do you so eloquently put into words what I feel almost every day?

By the way, I have a surprise for you over on my blog. I hope you visit and see:

Thanks for your amazing insight!


poohder said...

From one mother of a child who has autism to another... A..M..E..N!!!!

Elaine said...

And a third Amen.... Only a parent with a child on the spectrum could see this so clearly. While it's been a while since my child had challenges in public I can remember all to well the earlier years when he was first diagnosed. The stares, the unsolicited "advice" the dirty looks...

Marlowe Bechmann said...

Autism is such an invisible disability, it definitely is difficult as a parent. But everyone judges everyone all the time - it's not just us. I find that educating your community really helps. When people understand why children with autism are acting differently - or even that they have a disability - they are mostly wonderful. I've gotten quite good at it now, However one time when my daughter was 6 years old and took french fries off someone's tray - the grandmother said loudly - "How rude of that girl. Obviously her parents didn't teach her manners". I couldn't help it and said "My daughter has a lifelong disability called Autism. She can not speak or communicate and doesn't understand social skills. I'm sorry my daughter's lifelong disability slightly inconvenienced you for the day!" That left her speechless. :)

Niffercoo said...

Excellent post! (I keep looking for the "like" button! LOL)

Karen Zappavigna Hoogland said...

Excellent post, Penny. I've shared it on my Facebook.

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