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Posts Tagged ‘autism’

Down by the Ole Mainstream

This story is from 1981 when Aaron was 7 and Tommy 5. We were in the middle of our lawsuit against Cincinnati Public Schools to allow Aaron to be able to go to public school. Enjoy.

At the end of our street is a pond. Our family often takes walks down there to see the ducks and give them bread crumbs. One day last summer, an old man was down there and said: “Did you see the handicapped duck?”

Well considering I was pushing my seven year old son with a severe disability in his stroller, and considering the 24 hours a day I spend thinking about people with disabilities–this was really too much.

The friendly man went on, “Probably a frog ate his foot or maybe he caught it on the fence…”

Sure enough, there were about 40 ducks and one duck was missing his foot and about one-half of his leg. The duck hobbled toward us but when Tommy tried to pet him he scrambled for the bread crumbs with the rest and then swam away.

Before we left, we did throw him some extra bread crumbs just because we wanted him to know we were friends who understood life’s little extra challenges.

I went home and joked to my friends that at least some humane society didn’t come and set aside a special pond for disabled ducks, start a supplementary training program and segregated nesting area–or some exploiter didn’t take him to Utah and enter him in some freak show for tourists.

We checked in once in a while over the winter, but I really was a lot more worried about people with disabilities than the ducks. We were trying to mainstream Aaron, into a public school. (This was before “inclusion” was thought possible.)

Yesterday the weather was warm so we walked to the pond and saw there were only about 15 ducks. We were only there a minute when that same man came running down full of concern. He told us someone was catching the ducks, putting them in plastic bags, throwing them into the middle of the lake and then watching them drown.

We were shocked. Who would do such a thing?

Meanwhile, the few ducks that remained came swimming toward us looking for the bread crumbs. Guess What?

The “handicapped” duck was among the survivors.

I’m not sure what this all means or why I thought to write about it, but with all the cutbacks and anything else they can think up–I think the duck gave us a message–we’re going to make it. There are some mean horrible people out there, sure. But there are also wonderful people like the man who cared for the ducks. There is risk being in the community–but that is also where there is safety.

This week Aaron learned to peel his own banana, he went boating and he saw a “handicapped” duck that was smarter than the non-handicapped ducks. We also just need to get smarter.

The dream… it lives!

Quiz: For those of you who read the story about the difference between disability and handicapped (click here) and tell me. Did our duck with the one leg have a disability, a handicap, or both?

Share your Stories of Hope

What helps keep your dreams alive? Any duck or pet stories?

Do the words disability and handicapped mean the same thing?

This is the second in a series of posts to explain some of the basic ideas of inclusion and normalization.

The first was from one of my heroes Norm Kunc. Norm Kunc| What’s Your Credo?

If you find these useful, I hope you will comment and then share them on Facebook, Twitter and your other social media. Thanks. Mary

Words and labels make a big difference in our lives. How you answer this question can make all the difference for a person you love.

“Disability” or “Handicapped”?

Do the words disability and handicapped mean the same thing?

The short answer is NO. Disability and handicapped do not mean the same thing. And the differences are important. Is Stevie Wonder handicapped?

Does Stevie Wonder have a disability?

“A DISABILITY refers to a reduction of function or the absence of a particular body part or organ.”

So YES, Stevie Wonder, who is blind, would qualify as a person with a disability.

A disability is usually a lifelong condition: autism, an intellectual disability (the new term for mental retardation), cerebral palsy, or being deaf or blind….

Does Stevie Wonder have a handicap?

“A HANDICAP is viewed as a disadvantage resulting from a disability that limits or prevents fulfillment.”

Does being blind prevent Stevie Wonder from singing or achieving personal fulfillment as an entertainer? NO. So Stevie Wonder, though he has a disability, does not have a handicap.

Does Stevie Wonder need support? Of course. If Stevie Wonder did not have a personal assistant or any of the other modifications and adaptations he needed, then he might be handicapped.

See the difference?

Terrence Parkin swam in the 2000 and 2004 Olympics, winning a Silver Medal for South Africa. Does he have a disability? Yes, he is deaf. Does he have a handicap? Not as long as they add strobe light signals to the usual auditory buzzer to start the race. If however, the committee didn’t agree to add the strobe lights, then Terrence would have been handicapped and unable to participate in the Olympic Summer Games. Being handicapped can depend on the attitudes and social construction of the culture.

Disability is socially constructed

Like many people my age, I have trouble reading small print, (Disability). If I lived in a society where there were no books, or it was against the law to teach women to read, it might not matter if my eyesight was as sharp as it was when I was younger. However, in my culture, so many people wear glasses there is no stigma attached to having the disability of poor eyesight. So, I do not have a handicap. If I use a wheelchair and the building is accessible, I can still have a disability, but I can go to the grocery, do my banking… and not be handicapped. (I hope this makes sense. We will talk more about this in a future post.)

Why is this important?

If you or someone you love has a disability, it is not the end of the world. Even though there might not be a medical miracle or cure at this time, the disability is just a disability. No one wants to be different than anyone else. No one wants to have a harder time doing things than other people, but with the right supports it is possible to have a fulfilling and satisfying life, and not be handicapped.

This is a message full of hope. Robert Schuller says, “Look at what you have left, not what you have lost.” Physical, Occupational, Speech Therapists, Teachers, Counselors, as well as family members, friends and neighbors can look at their attitudes toward a person with a “disability” and rather than get stuck on something they can’t fix, instead spend their energy on creating an inclusive environment that is accessible for all of us.

This is our call to action: We can each think about what we can add, subtract or change to the environment to give a person with a disability the support they need so they will never have to be handicapped.

In the comments tell me what you are thinking. Do you have a story to share? How are you making your child or loved one less handicapped?

Keep Climbing: Onward and Upward

All my best,

Mary

Reference:
Bauer and Shea (1997) Special education: A social systems perspective. Brown and Benchmark: Chicago.p. 12.

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Just learned from Katie Snow of Disability is Natural:

LANGUAGE CHANGE!

Thanks to the hard work of the Advocacy Leadership Network (ALN) of Hamilton County (Ohio) DD Services, the Hamilton County Board of Commissioners officially resolved that “accessible” will replace “handicapped” on all new and replacement signs in the county! ALN, composed of leaders who have disabilities, had previously been instrumental in having the phrase “mental retardation” removed from state laws in Ohio.

Autism Awareness Day| Direct Action is Better

Autism Awareness Day at the Opera

Autism Day at the Opera

April is Autism Awareness month. The United Nations General Assembly even designates a World Autism Awareness Day.

World Autism Awareness | Gone Amuck

For the last week, I’ve been following the comment streams on Twitter (#Autism, #ASD, #WAAD…) and other social media outlets like Facebook… and I wonder if the whole world is nuts.

My son is 39, has autism and we are desperate for help. So I appreciate the need for autism awareness and DIRECT ACTION.

For autism awareness day, I’ve learned some people are buying blue mascara and lipstick to spread “awareness about autism.”

Others are using April 2nd as a “retail therapy” day to buy new clothes in blue.

How will Autism Awareness Day impact the lives of people with autism and their families?

For the life of me I can’t imagine why blue lights at the Sydney Opera House, The White House, Empire State Building or the house next door will change a thing–except for the blue light bulb retailer.

Put Time and Money where your Mouth is

It makes more sense to me, that the expense of buying blue lights, hiring a team of workers to install and operate those lights for one day–is just dumb and a waste of opportunity.

Using those same dollars, the Opera House could invite families or parents to an evening of the opera. Sure, the Sydney Opera House might not get the same press, but the impact would be direct and measurable. Real families would have the treasured opportunity for a night of respite.

I understand the White House is meeting with some advocates for autism which is an action step–much more useful in my opinion to a blue illusion.

The Empire State Building–well, there were those romance flicks with the hearts on Valentine’s Day, but really?

Action–not Hype

Now good people and advocates are working hard for all this autism awareness, and I know my skepticism sounds like sour grapes or something mean spirited.

I’m just tired of being used and being the victims of charity.

Past Experiences with the Charity Model and hype

One time our family was on a trip to the Smokey Mountains. My husband Tom, an avid golfer, passed a golf course which had a huge sign over the gate “Welcome Special Olympics.”

Tom went to the front desk and asked if Aaron, our son with the label of autism, could ride in the golf cart as he played golf.

The desk clerk looked confused. Tom said Aaron would be sitting next to him and would not even be on the course. He also told him Aaron has accompanied him on other golf courses and it worked out fine.

As the clerk continued to stammer around–Tom pointed to the “Welcome Special Olympics” sign.

The young man shook his head,

“Tomorrow, our Special Olympic fundraiser is for radio/TV personalities, the Governor and all kinds of influential people coming to play golf. NOT–those kind (pointing at Aaron). This is our public relations and publicity event for the year. It isn’t for them. We don’t allow them on the course.”

Real People–Not Causes

At a time when getting services for children and adults with autism and their families is desperate, my hope for tomorrow is that people will spend a couple minutes with actual people who have the label of autism.

If you want to dress up in blue from head to toe, with blue eye shadow and lips, more power to you. But somewhere in the day, actually touch a real person. Make a difference in an actual life.

Make the Autism Awareness Day, more than a media moment.

Take the opportunity to begin change–one on one.

Keep Climbing: Onward and Upward
All my best,

Mary

What do you think?

Are you wearing Blue? Are you going to spend a couple minutes with an actual person who has the label of autism?

America the Beautiful| Through the Autism Car Window

Hi Everyone. Getting ready for a vacation? Thought you might like to read about our family trip out West that changed our lives.

Sitting on the top of the world

Just need Julie Andrews in the picture:)

Oh Beautiful for spacious skies…

From the moment I was pregnant, my husband Tom dreamed of the day he could retrace his childhood trip out west. He glowed in the memories of mom, dad and kids studying the maps on the kitchen table, packing the lunch meat sandwiches in the cooler, and repeating the rest-stop conspiracy of Dad throwing the baseball high over his boys’ heads so they would chase the ball and use up some of that stored energy. The year our son Aaron was ten and his brother Tommy turned nine, faithful to Ulrich family tradition, we headed west. The main difference between my husband’s family, and ours, was that Aaron has autism.

Preparing for the trip

Aaron didn’t start walking until he was five, and even at ten was not completely independent in the bathroom. So how were we going to follow his needed routines for toileting, understand Aaron’s wants without the use of words or signs, watch his balance issues, and especially, cope with unpredictable behaviors? How were we going to manage twenty-one days of camping, sleeping, eating, and interacting with strangers in strange places? How were we going to survive–much less enjoy–visiting eleven National Parks and Monuments, twelve states, Mexico, and traveling five thousand miles?

Certainly, we were not the first family to attempt a western vacation with a child with complex needs, but we also knew we were not going to be “typical” tourists. Tom and I briefly considered leaving Aaron with a friend or in summer camp, but we decided this dream vacation included our “whole family.” We would make it work.

Adaptations and Accommodations

What could be more All-American?

Using our teaching and parenting skills, we designed adaptations and accommodations for the trip. In previous years we camped in state parks and all shared a big tent. Aaron had a terrible time sleeping on the ground in such close quarters and often our sleeping bags got soaked in rain storms, so for this adventure we decided to buy a pop-up camper. Our pediatrician recommended some medication to help Aaron relax and sleep at night. We planned to follow Aaron’s schedule for meals, breaks, and sleep. We would only visit restaurants at non-peak hours, choose corner tables, avoid long waits, and skip most museums. We installed a child-proof lock on the car door and had a suitcase of games, music and snacks. Tommy and Aaron’s jobs on the trip were to crank up the camper each night and help carry the water buckets–jobs that were successful in our previous trips.

Oh Beautiful for pilgrim feet…

Like the pioneers of old, and Tom’s family a generation earlier, at dawn our family set out from Cincinnati with Tommy’s version of a “Colorado or Bust” sign taped to the windshield, driving not oxen-pulling-a-Prairie-Schooner, but a brown-station-wagon-pulling-a-pop-up-camper. We were confident we could handle any of the challenges we knew would come. We would enjoy our family-time and see the beauty of America. And fortunately, instead of mud and rock trails, we had interstate roads and could travel sixty MPH.

We Americans like to brag about being the melting pot and/or salad bowl of the world, a nation that values brotherhood and diversity.

Even with our best preparation, instead of a three-week vacation, this became a three-week teaching excursion. It seems the human America was not quite ready for us.

At home we were surrounded by people who know us; they saw the beauty in Aaron and our family. With the strangers we met on our journey, we had both negative and positive interactions.

Transformational Experiences, day after day

As if we had a disease, one family packed up their tent and moved it to a site on the other side of the campground, and a pregnant woman crossed the street so she wouldn’t have to pass us.

One evening Aaron was enjoying the loud echoes that he could make in the campground bathhouse, and a young boy ran out screaming, “The Hulk, the Hulk’s in there!”

An elderly man said, “We have one of ‘those’ in our family but he doesn’t travel, he lives in a home.”

“Mom, what’s wrong with that boy? Does he act that way on purpose?” The mother whispered, “SHHH, he’s retarded,” and like we were dangerous, yanked the child’s arm and dragged him away.

“Have you tried the Feingold or gluten-free diet?” or, “I know an allergist in Illinois who can get kids like that to talk.” It seems many people think they have the right to offer advice. I am sure they think they are helping, but do they really think we were so desperate we needed a consultation standing in line at the grocery? We struggle with the question: Can Aaron ever be accepted just the way he is, or does he only have value if he is “fixed” or “cured”?

In Arizona, we were asked to leave a family-style restaurant because, as the manager said, “We don’t serve people like him.” Tom and I were shocked because Aaron was happily eating his pancakes. If he had been noisy, we would have understood, but he was acting as normal as anyone. Sobbing, I hurried Aaron to the car wondering what we were going to do a thousand miles from home. I realized this was the lowest point of the trip and saw a glimpse of the discrimination that has followed individuals of other ethnic and racial groups. The stigma of being asked to leave a restaurant because some anonymous person didn’t like the way my son “looked,” and the management’s open prejudice presented an uncomfortable dark side of America I will never forget.

Oh Beautiful for heroes proved…

Our trip would have been devastating if only bad things happened, but we actually had some very positive experiences.

People would ask with smiles, “Where are you from?”, “Where did he get that red hair?” or “How old is he?” Just ordinary questions, but kind gestures and communication starters.

A parent of a child with Down syndrome commented, “I hope the programs in Ohio are better than in Missouri.”

One young girl smiled at us, “We have special kids in our school. My best friend’s name is Brian, he reminds me of him.”

Several children sought out seats next to Aaron and Tommy on a park swing, maybe just for a closer look, but they made eye contact and tried to make Aaron smile. Several gently pushed Aaron on the playground swings, merry-go-round, and gave him a turn kicking the soccer ball.

Aaron pinched me when we were rocking violently on a small plane sight-seeing ride over the Grand Canyon, the pilot said: “Don’t worry, I’ve had grown men reach over and hold my arm.”

At one roadside park all the visitors collectively held their breath as Aaron climbed the steps up a steep slide. Tommy guided him to the top where after much arm-flapping and nervous hand-biting, Aaron finally let go. As the wind struck his face and he barreled down the slide, Aaron’s expression was one of absolute joy. Everyone in the park clapped and cheered. This was not just a glorious moment for Aaron; this was a glorious moment for every person in the park.

In a swimming pool in Arizona, a life guard got in the water during her break and showed Aaron how to swim on his back.

On a train ride in Silverton, CO a little girl moved into the seat next to Aaron and taught him an adapted version of the game Connect Four.

A waiter in Mexico brought Aaron an extra pack of crackers while we waited for our meal and tried to entertain him by singing Old McDonald in broken English. He even helped cut up Aaron’s food. His empathy and understanding crossed national and language barriers.

Universal Design and Inclusion

In the National Parks we found many examples of universal design: accessible water fountains, paved paths, and self-guided tours enabled us to partially participate in the park activities. Several of the campground managers gave us campsites close to the restrooms. At Carlsbad Caverns, New Mexico there were benches and a bypass for the steep climbs. A small work crew with disabilities in Grand Canyon National Park did yard work, and a waitress at Canyon De Chelly used sign language to take an order from a customer. These inclusive accommodations not only made it easier on us, they actually made us feel welcome.

Survival means Adapting to the Environment

We were ambitious. We flew above the Grand Canyon and went down in the caves of New Mexico. We had a lovely lunch at the Broadmore Hotel with water goblets and doilies, but were asked to leave a family style restaurant. We drove to the top of Pike’s Peak and the whole family climbed the ladders of Mesa Verde’s Cliff Palace. We saw Native Americans adapt and survive their desert environment by seeing the value of every living plant and creature. We tasted jelly and saw sewing needles made from a cactus. We heard wolves howling, and we howled back singing every song we knew around the campfire. We took pictures and made memories that will last a lifetime. And perhaps like the Native Americans who live in the desert, we were learning how to adapt to our environment.

Lessons from the Road

We were physically and emotionally exhausted. Many amazing things happened that brought our family closer together. At the same time, though, I feel Tom, Tommy, Aaron and I crossed the line.

We could no longer think of ourselves as a family with one member who happened to have a disability; we were truly a “disabled family.”

I am not trying to be shocking or dramatic. We just had to concede that most of the general public did not seem to have the motivation, information or skills to assimilate us into their version of a “typical family.”

We also learned we had no anonymity; we stood out even in the largest group. Five hundred people came to see the bats fly out of Carlsbad Caverns, but because of Aaron’s shout when the bats emerged; four hundred ninety-nine people were looking at us.

We learned that celebrating the diversity of the landscape of America includes seeing the beauty of the diversity of its people.

Planting Appleseeds

Our experiences reinforced our commitment to the inclusion of people with disabilities to live, work, recreate, and go to school with their neighbors, brothers and sisters. We cherished the positive experiences; the children we met gave us so much hope for the next generation of Americans, and travelers. Like Johnny Appleseed on his trips out west, we tried to drop positive seeds that other pioneer families will nurture and see bear fruit. Perhaps a future Kodak moment for our country will include not only the beautiful American landscapes, but people like Aaron and our family.

Better than “The Buck Stops Here”

One last story: In Missouri, inside the Truman Memorial Museum with its high ceilings and big rooms, Aaron started, “vocalizing.” Oh, how it echoed. The guard came up to us and said either Aaron would have to be quiet or leave. Tom started to go, when another tourist came running from across the room. He looked the guard right in the eye and said, “How dare you speak to them like that. That young man is a citizen of this country and has a right to be here. Harry Truman was a strong supporter of the ordinary person. He, of all people would want them to be here.”

As we pulled the car into our driveway, Tom and I were wondering if it was worth it. Would we ever take another road-trip? But like always, our children showed us the way. As he was running into the house to be the first person in the bathroom, Tommy called over his shoulder, “Next year I want to go to Florida!”

And crown thy good with brotherhood, from sea to shining sea!

Add your voice:

Be sure to leave a comment and let me know about your travel adventures. Is it harder when you are away from home and your typical routine?

Keep Climbing: Onward and Upward

All the best,
Mary
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Copyright Ulrich 2000-2013
Original Work do not copy without Permission