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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?

Memorial Day and People with Disabilities

Color Guard
Creative Commons License photo credit: Envios

Ever wonder who puts all those flags on the graves of veterans?

MEMORIAL DAY

Like communities all across America, on Memorial Day our city holds a celebration to remember our basic values. A parade starts at the high school and ends at the cemetery where generations of citizens and soldiers end their life’s journey.

As the sun was beating down to the Sousa marches, our whole family, including my uncle John, was standing by the largest fountain, watching the parade of Little League teams, high school marching bands, Boy Scouts and the politicians in their red, white and blue ties.

The cemetery was beautifully prepared. The lawns were like carpet, the grass on the edge of the sidewalk was so carefully clipped, it stood at attention; the peonies, irises and annuals colored the grounds with reds, pinks, purples and whites. Everyone was feeling damn patriotic.

Everyone, except Uncle John. He turned to me and said, “I wasn’t always handicapped.”

“What?” I know I raised my eyebrows and wondered where this was coming from. I mean, Uncle John was never a happy person, but since he had a stroke, he was a weary soul. We hoped this celebration would lift his spirits. After all, who doesn’t like a parade?

Uncle John explained, “You know, I was an electrician. I was important, I contributed, I worked in a great hotel for 30 years. Now I just sit here and watch life go by. I’m handicapped and useless.”

Not exactly cheerful parade conversation but I couldn’t resist. “Uncle John, having a handicap isn’t the end of the world. Can you enjoy the parade? Look at those little kids jumping up and down on their decorated wagons.”

“You just don’t understand,” he said. “I’m not like him,” eye-pointing to Aaron.

Some Battles Can’t be Won

Since Aaron, my son with the label of autism, was sitting in the lawn chair next to Uncle John, I felt I needed to say something.

But I couldn’t find any words.

In silence, we were side-by-side, almost touching–yet thousands of miles away from each other–as we watched the veterans from the VFW pass by in antique cars.

The soldiers varied in shapes and sizes, men and women, veterans from the current Iraq, Afghanistan war to seniors of the war that would end all wars—but didn’t.

The sun reflected off the windshields, and I reflected that our society treasures the antique cars which are worth more now than when new. The old model cars were spit shined and decorated with banners. The old soldiers also wore banners, but many of their faces and bodies were worn. Did our society value them?

Some soldiers were younger than my sons, Aaron and Tommy. But, we all know their youth was shattered in the deserts and mountains of strange lands.

Some of the veterans in the parade carried the labels of “handicapped and disability.”

As the crowd cheered and waved, I had to wonder if these brave men and women would be truly accepted into our society. Would others, like Uncle John, say they were “useless”?

Would they only see the handicapping condition, would they consider these wounded warriors better than Aaron, because they were once whole? Because they were “damaged” fighting for our country?

World War II Story

As the speeches droned on, I remembered a couple stories by Bob Perske. One where he talked about people with disabilities and the war (click here).

And another: Bob said after WWII, a family in London moved into a new neighborhood. Instead of saying their son had cerebral palsy and had the label of intellectual disability from birth, they told their neighbors, “He was gassed in the trenches of Germany.” And in a post-war era of grief and loss, that benign lie made all the difference. Instead of avoiding or shunning the family, the new neighbors welcomed their family into the community. Their attitudes were completely different.

Modern Day Attitudes

A soldier who used a wheelchair got some sort of award and the crowd clapped. I wondered if our community embraced his family, or did we just give him a token wall plaque on Memorial Day and then segregate, discriminate and ignore him the rest of the year. Would he get the support he needed to live, work and recreate in the community?

The same questions I often ask for Aaron. Is one human more valuable than another? Is that what our country stands for? What the soldiers sacrificed for?

Disabled and Yet-to-be Disabled

Didn’t everyone understand there are only two groups of people in this world–the disabled, and the yet-to-be-disabled? If we live long enough, each of us will have a disability.

Being Useful, Proving Worth.

People with disabilities are not useless and just watching the parade of life go by.

And then being a good advocate—or crazy person who doesn’t know boundaries or when to quit– I asked Uncle John if he noticed how beautiful the cemetery grounds looked.

I told him Aaron worked at this cemetery. He and the crew of people who did the landscaping had disabilities, but if they had the support they needed, they weren’t handicapped and “useless.” In fact, they were the ones who made the grounds look so beautiful.

I pointed to the rows of tombstones which each held a single flag.

I told him that for the last 2 days, Aaron’s job was to place a flag in the holders by each tombstone. And tomorrow, Aaron would go back and remove the flags and save them for 4th of July, when he would again put them out.

Was Aaron useless?

What I remember| Memorial Day:

It’s been ten years since that Memorial Day parade. Uncle John died a couple months later–old, bitter and handicapped. He never hugged Aaron or saw what Aaron could do, only what he couldn’t do.

And, like the day of the parade when he missed the joy, pride and purpose of the Memorial Day celebration, Uncle John also missed the joy Aaron brought to anyone who opened their heart.

I think Aaron and I will wave a couple flags tomorrow to celebrate America.

And, I’m hoping that while Aaron was placing those flags in the cemetery, other people were seeing him as a competent, contributing member of our community.

Keep Climbing: Onward and Upward
All my best,

Mary

Comments:

Come on, I know you want to share some memory of your own Memorial Day Parade, family reunion, attitudes about disabilities and “Handicapped.” Lots of good ideas, let us know what you are thinking.

Related Stories:
Aimee Mullins and Survival of the Fittest

What makes you special? A Soldier story

Do the words disability and handicapped mean the same thing?

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 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

Copyright Ulrich 2000-2013
Original Work do not copy without Permission

I love Aaron| I hate Autism

Aaron and his family

Our Family 1980

Aaron at piano

Aaron at Piano 2011

In our Introduction to Exceptionalities class I am starting with a look at point of view.

Proust says, “The real voyage of discovery is not in seeing new lands, but in seeing with new eyes.” I am encouraging the students to take a risk and try to see with new eyes.

I’m repeating this post on my view on Autism.
I hope this short piece will show them a personal view they may not get anywhere else.
According to the Google stats, this is one of my most popular posts. I hope it is helping people make sense of all this.

Can I love Aaron and hate autism?

If I say, “I love my child, but hate cancer or heart disease…” many people would say that is okay.

If I say, “I love my son, Aaron. I hate autism.” some people say that is NOT okay.

So, call me a villain, ignorant, hypocrite, politically incorrect, or whatever–but I refuse to celebrate autism–I refuse to give autism that power.

I gladly celebrate the diversity of individuals. This diversity makes our world stronger and a more interesting place to live.

I love individuals who have autism, just the way they are.

But–I will not celebrate autism like it is a good thing.

World Autism Awareness Day April 2

The United Nations designated April 2 as World Autism Awareness Day. April 2nd next year is already designated too.

Are you going to wear blue? Will blue lights in the Empire State Building, or on the Jesus statue in Rio, or the top of a pyramid in Egypt really mean anything?

Is this like a birthday party? Something we celebrate every year? Send up the blue balloons? Paint your face blue?

I found some of the World Awareness Day press curious: “In fact a world without Autism would be a lesser world.” New Zealand: United Nations declare day to celebrate autism

I think wearing black would send a better message. Autism Awareness should send a plea for action NOW. We need help and resources NOW.

So, the United Nations has established April 2 as World Autism Awareness Day. Great! Let’s talk about autism.

What causes Autism?

Well, no one knows for sure. The “experts” have narrowed the cause down to: environmental, biological, sensory, abuse and neglect, genetic, chemical, neurological, food…and the ever popular–it’s the parent’s fault.

So the short answer is, who knows?

Yesterday someone told me our children have autism because they don’t get enough eggs. Just add that to the list. They might be right.

I recently read a study (2013) that blames the grandparents. They conceived the parents late in life.

Don’t you love scientists–probably funded with the autism awareness fundraising, eh?

Dr. Anne Donnellan spent her career working with families and people with autism. She often says, “The more theories, the more proof that we don’t know.” She also gives her version of circular logic in Disability World.

Circular Logic

Parent: My child keeps flapping their hands.

Doctor: Ah, that is because your child has autism.

Parent: How do you know?

Doctor: Because your child flaps their hands.

Is Autism the Greatest Gift?

Some advocates want you to think autism is the greatest thing ever. They talk about the special abilities of people on the autism spectrum and say it is only because of autism they have these talents.

Hummmm. Is that so?

Sure Temple Grandin, with a glance, can tell how many nails are needed to build a livestock yard–but is that only possible because of her autism?

Rainman could count the number of toothpicks on the floor. Is it possible there is someone else in the history of the world that could also do that?

Are we again caught in circular logic?

Parent: My child can count the number of nails or toothpicks.

Doctor: Ah, that is because your child has autism.

Parent: How do you know?

Doctor: Because your child can count the number of nails or toothpicks.

There are some people with the label of autism who can tell you the day of the week for every calendar year in recorded time.

I can’t. Probably you can’t. But, is it possible there is at least one other human being without the label of autism who can?

The Guiness Record books are full of typical folks who can do all sorts of incredible tasks.

Hurry, quick. Do we now need to give those persons the label of autism?

There are some who are going back to past genius’ and claiming they must have been autistic…Mozart must have had autism. Disney perserverated on those mouse pictures–he must have had autism….

Couldn’t Temple Grandin and Donna Williams just talented people? Isn’t it demeaning to say, “No, the individual Temple Grandin has nothing to do with it, it is only because she has autism.”

Is it possible the statistical increases in the number of people with autism is partly due to our current scientific paradigm of labeling and sorting people? And some people promoting “autistic envy”? The new figures are 1-50. One child in every fifty–and all we are doing is having Autism Awareness Day at the Philadelphia Zoo?

What is normal?

Well, turns out we don’t really know that either. Plus, we could say “normal” changes every year in every culture.

Sure we have tests, but anyone who studies IQ or other quantitative or quantitative measures will point out the flaws.

Multiple Intelligences| Howard Gardner

Howard Gardner, studied people with autism who were labeled as autistic savants (actually “idiot savants” was the term used at the time). He was able to identify at least eight different kinds of “gifts or intelligences.” Now, in every school in the world (that uses best practice) his theory of multiple intelligences helps all children learn. Gardner says each of us has all these eight intelligences, some are just more developed than others.

This is one of the side benefits of autism. Without the diagnosis of autism, the scientific community might have had a harder time making this discovery. Science needs large groups.

Could it be we all have gifts and traits of genius, gifts and traits that could be labeled as autistic? Are we all a little autistic? Are none of us “autistic” in the pure definition of wanting to be apart.

Stinkin’ Thinkin’

So, what’s the deal about autism? Can’t we just celebrate individual diversity?

If we really believe autism is a tremendous gift, then it would be logical for each parent to wish their child would have autism. Right?

I once went to a conference for people with Down syndrome. Everyone kept talking about how people with Down syndrome were the happiest people in the world–how glad they were to have their child in their family. They used examples like, “They will always believe in Santa.” “They are pleased when I fix them chocolate milk.”…

Using circular logic:

Parent: I want my child to be happy.

Doctor: Children with Down syndrome are happy.

Parent: Then I want my child to have Down syndrome.

So, if we want our children to be happy maybe we should try to figure out how to add an extra chromosome to every baby’s DNA.

If autism makes us gifted, maybe we should be researching how to make 100% of the population have autism–add autism magic to our babies’ lives.

This kind of thinking is just nuts, yet it is common in each area of disability. Stick around Disability World and you will hear people yearn to have the courage of people with cystic fibrosis and muscular dystrophy, be sexy like people with cerebral palsy….

Okay, I understand some advocates are probably hyperventilating at this point. How dare I talk this way about people with autism and Down syndrome?

The person who gets joy in Santa, or in having chocolate milk is an individual. Each individual person–even if they have a label– is different.

We can love the individual–not the disability.

As family members, friends and as self-advocates, we can value the individual person’s talents, gifts, joys and sorrows. We can see them in the context of their environments–but, we don’t have to give all the power and credit to the label of disability. The individual should get the power and credit. They are the ones who are who they are.

I can love my Aaron–I don’t have to love autism.

I can see Aaron’s gifts and talents–I don’t have to think they are only because he has the label of autism.

Aaron is a loving person who makes kissing noises as I turn out the light. He smiles when I pull on the toes of his socks. He gives me hugs when I walk past him. He is patient as I try to figure out what he wants. He concentrates on his books and loves pictures. He gets excited when I come in a room. I love when he relaxes in his bath. I love when he initiates a song or going to the bathroom. I love when he figures out how to eat the cheese off my sandwich….

Aaron is unique. He adds his own version of diversity to the human family. He is a great son, brother, uncle, friend… just the way he is.

Autism sucks. Aaron doesn’t.

Autism affects each person differently.

In Aaron’s case, Autism means he can’t talk with words. It means he is 38 years old and can’t always tell when he needs to go to the bathroom. It means he has trouble making friends. It means he yells in public restaurants. It means he chews on his clothes and books and the car seats. It means he has motor difficulties and has trouble walking–crossing from the rug to a tile floor. It means he is always afraid of falling and losing his balance. It means he bites his hand to calm himself. It means it takes him a long time to learn things. It means he will forget them if he doesn’t practice them every day. It means he likes music, but not loud noises. It means he likes to be moving (in cars, buses, boats, planes…) It means he likes to swim, but not bend over. It means he can’t tie his shoes or dress himself independently…it means he cannot be left unsupervised even for a minute.

That all sucks.

I wish it was easier for him. I wish it were easier for me to help him.

But all those difficulties don’t mean I don’t love Aaron with every fiber of my being.

Each day for the last 38 years, I work to get Aaron the support he needs to live, work and recreate in his community. To allow him to be the best person he can be–For him to be able to make choices and have opportunities he wants.

There is a difference.

Dream Plans for Aaron Ulrich

I am adding our dream plan for Aaron. You can click on each of them and see I am NOT trying to cure Aaron. I am NOT trying to make him a different person. I love and respect him as the person he is.

I am NOT trying to make him the person I want him to be.

The first one we wrote in 1981 when he was 6 years old. Dream 2: 1989 The next Dream 3: 1998. And, Dream 4: 2010.

Every day Aaron teaches me about courage, love, and tolerance. But he knows he can count on me, my husband, and his brother. He knows Annie, his caregiver will do her best to look out for him. He wants a new housemate, like his former housemate Jack who will be there for him. He knows his grandma and extended family including Ana and his niece love him just the way he is.

And until our dying breaths, we will do our best to make his life happy.

No, I’m not going to inject Aaron with an extra chromosome to make sure he is happy. No, I’m not going to give this thing we call “autism” supernatural powers to dominate his life.

But I will give him opportunities to make choices about his life as best he can–in spite of “autism.”

Yes, I can Love Aaron and Hate Autism.

Autism Awareness Day Marching On

Celebrate each wonderful individual person you meet in this video.

Keep Climbing: Onward and Upward.

All my best,

Mary

Comments:

Are you sitting there thinking, “how can this mother be an advocate for people with autism?” Do these words make you upset? Do you agree? Do you think “Disability World” thinks different than “The World”? Can we separate the individual from the label?

Related Article:

Here is another article about Autism Awareness Day asking people to do more than just wear blue.