Anyone can be a Father, but only someone special can be a Dad. (anon.)
“Love is that condition in which the happiness of another person is essential to your own.” (Heinlein, Stranger in a Strange Land, 1961.)
What is a Father’s “unconditional love”?
Many people have trouble explaining “unconditional love” and “fathers.”
I remember one Hallmark commercial where an older dad said he really only understood a father’s love when he saw his son holding his new baby–his grandchild. We were fortunate to see our son, Tommy with his new daughter. That is one amazing moment and made our hearts burst with love and pride.
But when I think of my husband Tom, and the harder love, the real unconditional love, it is when he is with Aaron, our oldest son who has the label of autism, intellectual and developmental disabilities.
Love is in the details, not the traditional big events like a new grandchild. It is in the demanding-ordinary-daily-love Tom pours into making Aaron’s life “normal” and “special” at the same time. Doing things that have to be done, when you would rather do other things.
Here is today’s example:
Dad picked up Aaron at his house at 8:30 AM today. The caregivers are going to a family reunion, so we want to give them some additional time off. After checking on his meds, asking about his toileting, Dad talked to the caregivers about our recent visit to Aaron’s medical doctor. Tom tells the staff, “Yes, you have to get the prescription filled.” And “Yes, this is now Saturday and we went to the doctor on Monday. What’s the problem?”
Tom then brings Aaron home to our house, takes him to the bathroom, cuts his fingernails, throws in some laundry (I’m still recovering from my surgery) and after an hour takes Aaron to get a haircut, go to the grocery and treat Aaron to a hamburger. Mom gets to stay home and hang out on the computer.
Later today we plan on taking Aaron swimming, and then seeing Tommy and his family to celebrate Father’s Day. We’ll take Aaron back to his house about 8:30 pm.
Dad is hoping to catch some of the US Open Golf Tournament on TV, but he fits that in between Aaron’s care.
Sure, as we celebrate Father’s Day, we’ll give Dad a couple little presents. I’m sure our granddaughter will give him a big hug and card too. But the “Bagel Guillotine” slicer, some peanuts for the ballgame and a new golf shirt will never be enough thanks for all the love and devotion Dad gives to his sons–every day.
Happy Father’s Day Dad! We love you unconditionally too.
Amplify the positive outliers
This week Seth Godin wrote an interesting post about creating change. He suggests that the easiest way is to “Amplify the positive outliers.” In other words, we don’t waste our time “extinguishing bad behaviors” and instead find “positive deviants,” positive examples of what we are trying to do and then “give them a platform, a microphone and public praise.” Seth says by focusing on our success stories and celebrating our superstars we will change our culture and strengthen our tribe.
In our Climbing Every Mountain community and other tribes of “inclusion” and “normalization,” we face daily examples of people promoting and building segregated schools for children with autism, segregated adult day (wasting) programs, even a new segregated “handicap only” baseball field. These are downright depressing and steal our energy and spirit.
So let’s begin thinking of positive examples and naming our “positive deviants.” In fact, most of the advocates and parents I know would like to be called a “positive deviant”—Yep, fits our label system just fine? Maybe we should be pushing the psychologists to adding that to the DSM, might make better reading than saying parents are still stuck in the grief cycle, eh?
Inspirational Video of people who changed the world
Enjoy this one minute of thinking about “The Crazy Ones” who helped change the world. If I was making a video, I would start with the above picture of my husband Tom and Aaron, the kid with all the labels–including “son.”
Some of the other Superstars in our life who would be in my video are: Annie Bauer, Michael Valdini, Dennis Burger, Colleen Wieck, Lou Brown, Anne Donnellan, Ed Roberts, Bob Perske, Tommy and Ana Ulrich, Mary Ann Roncker, Debbie Wetzel, Patty McMahon, Madeline Will, Patty McGill Smith, Patti Hackett, Leanne Bowling, Alison Ford and many others.
Join in the Fun
This post is dedicated to all the Superstar Dads out there who are changing the world.
In the comments, tell us: If you made a video of your “positive deviants” who would be your superstars? Not just dads, but parents, teachers, professionals, self-advocates who you think have changed our world? Who are the people who have moved us from segregation and given us the dream of an inclusive life with our families and terrific dads?
Hi Everyone. Getting ready for a vacation? Thought you might like to read about the family trip that changed our lives.
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.
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’m Memory of Bob Perske, a real hero to families and people with disabilities.
Bob Perske is a pioneer, a storyteller and a “Group Man.”
In his book, Circle of Friends, he tells the story of vulnerable people building circles of support.
Bob wrote the following speech to bring together Joe’s Circle of Friends who, even though they couldn’t stop his execution, used citizen advocacy like a jazz band, and blended their talents to prove Joe’s innocence 19 years later.
Bob ends with lessons learned and suggests action steps so Joe Arridy’s life and death will not be forgotten. Perhaps he couldn’t stop the injustice of his execution, but now there is a legacy which can help others.
It is my honor to share Bob’s words:
REFLECTIONS ON THE GROUP THAT FOUGHT FOR JOE ARRIDY
Written by Robert Perske but Voiced by Attorney Anne Treimanis
Pioneer Museum, Colorado Springs, Colorado, May 18, 2011
The Circle of Life:
Fifty-three years ago, I befriended a teenager who worked in a mission hospital in Espanola, New Mexico. His name was Richard Voorhees. He worked a morning shift in the hospital’s kitchen, went to high school and returned for an evening shift.
We got together a lot. He saw me as a mentor. Later, the mentorship was reversed when Richard Voorhees went on to become a skilled professor of sociology and anthropology.
That’s why, in 1992, while doing research in Greenwich Village, New York, Voorhees discovered a poem in an out-of-print book. He sent it to me and said, “I’ll bet this grabs you.” The poem described a warden “who wept” as he watched a death row inmate playing with a toy train on the floor of his cell.
On another occasion, Voorhees taught me how to feel a deep respect for trumpet player, Miles Davis. Davis was uncanny when he played in combos with other great musicians. Davis never played solos. He said, “I play what WE can play; NOT ME. I never play what I can play. I am a “group man.”
I THINK MILES DAVIS WOULD HAVE BEEN MOVED BY THE WAY OUR GROUP HANDED OFF TO EACH OTHER THE SAD MELODY OF JOE’S LIFE.
The Sad Melody of Joe’s Life:
• The poem about the warden who wept was sent to Watt Espy, the archivist at the Capital Punishment Project, in Headland, Alabama.
• Espy researched and connected the poem to the execution of Joe Arridy. He sent a packet of news clippings and detective magazines on the case.
• News reporters and history archivists up and down the slopes of the Rocky Mountains helped with the search.
• A book about Joe Arridy’s life and death was published.
• Pete Strescino, a reporter for The Pueblo Chieftain wrote a review of the book.
• Screen writer Dan Leonetti read the review and the book — and then wrote a screen play called “The Woodpecker Waltz.”
• A California film producer named Micheline Keller read the screen play and shed tears like the warden did.
• Teddi Roberts, the executive director of The Arc of the Pikes Peak Region and the members of her group offered a home base for many who worked on Joe’s case.
• Arc Street Worker, Craig Severa, became Joe’s “foot man,” “bag man” and “on-the-street cheerleader.”
• Attorney Anne Treimanis created a website www.friendsofJoeArridy.com. She did it at her own expense and filled it with every pertinent fact she could find on the case.
• The Arc organized a fund raiser to pay for a dignified tombstone that replaced that awful rusty motorcycle license plate marker on Joe’s grave.
• The Arc gathered 50 of The Friends together for a tombstone dedication ceremony at Joe’s grave.
• Mike Radelet, one of the nation’s leading spokesmen for stopping death penalties came to the ceremony.
• Photographer Antonio Sanchez created a montage of photographs of the group in action.
• Antonio Sanchez and Dan Leonetti talked Denver Attorney Dave Martinez into attending the tombstone ceremony with them.
• Attorney Martinez became interested in the case.
• Then all of the Arridy files were transported to his office in Denver.
• Attorney Martinez worked off and on with all of us for the next three years before writing a petition to Governor Bill Ritter, Jr.
• Terri Bradt, the granddaughter of Attorney Gail Ireland, heard about The Friends and she joined them. Then she wrote a book about how her grandpa rose up and fought like a tiger to save Joe’s life. She described how Ireland managed to get at least six stays before Governor Teller Ammons called the prison warden and ordered Joe to be killed within the next few minutes.
• Lisa Cisneros, Director of the Colorado Alternatives to the Death Penalty (CADP) offered her organization’s support.
• A heart touching song entitled “The Woodpecker Waltz” was written by “Identity Traveler Tom Garcia.
• A lovely, tender-voiced singer named “Molly” keeps the tears flowing when she sings Garcia’s song.
• Attorney Annie Treimanis recorded the song for all to hear by placing it in Joe’s website.
THEN CAME A SCARY DAY
• On October 27, 2010, Attorney Martinez delivered a 523-page “Pardon Application for Joe Arridy to the Governor of Colorado.”
• It contained:
— The Petition and Footnotes (41 pages)
— The Legal Memo (11 pages)
— Exhibits (173 pages).
— Affidavits in Support of the Petition (88 pages)
— Letters of Reference in Support of the Petition (210 pages)
THEN CAME THE GOVERNOR BILL RITTER’S ANSWER
• On January 7, 2011 — exactly 72 years to the day when newspapers announced Joe Arridy’s death — Governor Bill Ritter, Jr. issued a posthumous pardon.
THE GOVERNOR DID NOT STOP THERE
• He went beyond the expected by writing an in-depth three-page press release that went to newspapers and electronic media up and down the state. In it he explained in rich detail why he issued the pardon.
AFTER THE PARDON WAS ISSUED, OUR GROUP EXPANDED
• We were pleasantly surprised when relatives of Joe suddenly came out of the darkness and celebrated in public with us.
THEN CAME ANOTHER SURPRISE!
• We learned that Maria Tucker, a member of the Arridy family was employed as The Special Collections Manager for the Pueblo Public Library.
• Immediately, Dave and the group arranged for the transfer of the Arridy files to Maria who is now archiving them in the Western History Division of the Pueblo Public Library.
I AM AMAZED BY ALL THE SOLID PRODUCTS THAT HAVE BEEN PRODUCED THAT WILL NOT GO AWAY.
• There is a book about Joe Arridy’s life and fate.
• There is a book about Gail Ireland’s legal fight to save Joe’s life.
• There is “The Woodpecker Waltz,” Dan Leonetti’s heart touching filmscript.
• There is the website.
• There are hundreds of facts about Joe Arridy now being sent into cyberspace for the whole world to read and ponder forever.
• There is Dave Martinez’s petition for Joe Arridy’s pardon and the Governor’s response now filed in the vaults of the Colorado State Archives.
• All files on the case have been archived in the Western History Department of the Pueblo Library.
NOW COMES ONE MORE ROCK-SOLID PRODUCT!
• Five new words have been chiseled deeply into the face of Joe’s new tombstone. (See picture above.) They say:
“HERE LIES AN INNOCENT MAN”
• (Craig Severa will probably go to jail for adding them without asking permission from government officials who rule on such things.)
• Tomorrow all of us will go in a caravan to Woodpecker Hill to dedicate it.
IT TOOK 19 YEARS OF STRUGGLE
BEFORE WE COULD PUT THOSE WORDS ON JOE’S TOMBSTONE!
NOW, I SAY LET’S GO FOR ANOTHER 19 YEARS!
• Let’s apply what we learned on other heartbreaking miscarriages of justice.
• By the end of this next segment, I will be 103.
• So let’s get going!
• Here are five issues I would like to see us tackle.
1. WE NEED TO GAIN A CLEARER UNDERSTANDING OF THE HUMAN “WILL TO BELIEVE.”
As a young dad, I lectured my five kids about putting my woodworking tools back on their assigned hooks in the garage after they used them. Once, when one of my tools was missing, I yelled at the son who failed to put it back. I nailed the little guy. I harangued and harangued and I didn’t let up . . . until my wife softly took my hand and led me to the place where I had left the tool!
After sitting in many courtrooms, I have sensed how that wily little rascal, “the will to believe,” can corrupt the true facts of a case.
2. WE NEED TO STOP THE DEATH PENALTY
I shudder when I try to figure out how one mortal man can legally execute another mortal man. The Supreme Court’s ruling, in Atkins versus Virginia in 2002, did ban the execution of persons with intellectual disabilities, but I can’t let myself off the hook until the rest of humankind has this legal protection as well.
3. WE NEED TO DO EVERYTHING POSSIBLE TO SUPPORT AN ORGANIZATION CALLED THE “MURDER VICTIMS’ FAMILIES FOR RECONCILIATION.”
I am deeply touched by a certain fast-growing movement of families whose loved ones were murdered. Members of this group meet together and help one another to stop the agony that comes from screaming for “paybacks” for the killers of their loved ones. Now hundreds of murder victim’s families are helping one another to find a reconciliation. For them:
“Reconciliation means accepting that you cannot undo the murder but you can decide how you want to live afterwards.”
4. WE NEED TO FIGHT FOR THE VIDEOTAPING OF CRIMINAL INTERROGATIONS.
Due to our faulty “will-to-believe” attitudes, we will never “get the truth and the whole truth even with God’s help” when officers and suspects merely swear on the witness stand about what happened in the interrogation room. I believe that:
Judges and juries must be helped to see and hear for themselves everything that went on in the interrogation room. In this digital age it can be done by videotaping.
5. WE NEED TO RESPECT THE GOODNESS IN POLICE OFFICERS
I cannot name a school teacher who became a positive force in my life. But I can name a cop who did. His name was Bob Swanlund. He crossed my path on the inner streets of Denver when I was a teenager. He took to me and I sure took to him. On days off, we pitched a tent on Squaw Peak, the 11,540 foot mountain, 29 miles west of Denver and just in front of Mount Evans. We camped up there at least 40 times in three years. He became a father figure to me. During that time, I even tried to walk like him and talk like him. We stayed close until I went into the service in World War II and he became a department head in the Colorado State Patrol. During that period, he gently drummed into me the basic mission of every good police officer:
“The mission of every good police officer is to insure the safety and security of the neighborhood in which he serves.”
There is no job that is more noble than that.
SO NOW YOU AND I WILL BE MOVING ON.
I plan to go as a true believer:
I believe in God.
I believe in Evolution
I believe that all of us are brothers and sisters who were tied together by a single DNA match millions of years ago.
I believe that our earth revolves around the sun.
I believe there are thousands of solar systems like ours.
I believe that Martin Luther King was right when he said that “the arc of the moral universe is long but it bends toward justice.”
I believe that someday I may meet with Joe Arridy . . . I want so very much to do that.
In my career I came to care about many people like Joe:
So concrete in their thinking
So unable to figure out all of the complexities going on around them
So trusting of those who understand more than they could
So quick to respond to kindness from others.
So I believe that someday I will be able to get down on the floor together with Joe and his train. . . and both of us will be laughing and shouting:
“Train wreck! Train wreck!
Each of us “wills to believe” our government and justice system will find and punish the guilty, and free and protect the innocent. It is unsettling when the system doesn’t work. What are your thoughts?
Should people who have the label of intellectual disabilities have additional protections in the criminal justice system? Are the above action steps Bob suggests, so drastic and costly they cannot be implemented?
Bob’s song reminds me of Jazz, where each musician plays their own instrument and contributes their soul to the song. The members of Joe’s song were attorneys, friends, organizations… each adding their voice to the music. Is there a way to use each of our talents to work for social justice and change? Are you a “Group Man” or “Group Woman”? Is the song of Joe Arridy really a sad song?
Letter to Principal on Last Day of Jr. High School
June 6, 1990
Principal, Hopewell Junior School
Lakota School District
West Chester, Ohio
Dear Dr. Taylor,
Recently my nephew, Robert, started laughing hysterically when I mentioned his cousin; Aaron was going to be on the school cross-country team. “What’s Aaron going to do? Bite and push all the kids at the starting line so he can win?”
I was deeply hurt but tried to explain it wasn’t all about the winning but the trying that was important. Robert was shocked! “But why would you even try if you knew you couldn’t win?”
Different Kinds of Winners and Losers
I explained there were different kinds of “winning.” Aaron has autism but he also has the need for belonging to a group and regular exercise. Robert stared blank-faced, and after several more minutes I changed the subject. To this gifted 14 year old, who has above-average good looks, athletic ability and intelligence, this made no sense. Sigh.
Robert, Tommy (Aaron’s brother) and their peers are the people on whom Aaron will always be dependent. They are the next generation of parents, professionals, neighbors and…coaches.
The experiences and value systems they are developing in school, in the community, on the cross country teams–right this minute—will directly affecting Aaron’s future.
Robert has never gone to public school, run on an inclusive cross-country team or been friends with people with physical and intellectual challenges. Obviously, even his experiences with his cousin have made little impact. I think that is a deficit in his education. It will impact his future as a member of his family and community. It’s not a visible “D” on his report card, but it is an invisible “deficit” and loss in his life.
Who are the Winners and Losers?
How do you teach that the person who comes in first is not always the biggest winner? Can children learn it takes courage for not just children with challenges, but for all the boys and girls who finish near the end?
WINNERS are sometime those who RISK losing…being laughed at…coming in last.
Learning and Teaching Values
Each nation decides what is normal, average and gifted. They decide who are the winners and the losers.
Recently, we’ve been stunned by news accounts which demonstrate how the values in Iran, China, and Russia are different from our own. We have also witnessed incredible changes in philosophy, public opinion and policy. Values are fluid, changing and dependent on multiple factors.
Shaping those values and rights is something we do every day, consciously, or unconsciously. Sometimes value changes are dramatic like the Berlin Wall coming down–winners. Sometimes value changes are dramatic like Tiananmen Square-winners/losers depending on your point of reference.
The rights of citizens are gifts from a nation to their citizens. These rights and freedoms cannot be taken for granted.
The tragedy of having a child with a disability has nothing to do with the child, a syndrome, disease or label. The tragedy comes from the struggle with people in your family, community, country who decide if they will accept and support your family or rejected and isolate you.
Whether the differences are overlooked or emphasized. Whether the winners are only the ones who come in first.
“But Wait until Junior High”
When we went to court in 1979 (Cincinnati Public Schools) to allow Aaron to go to the public school, the doomsayers predicted, “MAYBE it would work in elementary school…But wait until Junior High!”
The teachers care only about academics, the sports are so competitive, the kids are so cruel–during lunch they will put drugs in your child’s milk”
They hatefully wanted to frighten us into accepting the segregated school and a segregated life.
Last Day of Junior School
Today is our last day at Hopewell Junior School and happily those predictions are laughable. Thanks to the vision and caring of the administration, staff, teachers–especially Miss Linda Lee–and the other students in the school Aaron and his classmates have had a great experience.
They are the first class of people with significant disabilities who have been able to attend a regular public school. It has been a new experience for everyone and it has been a success.
Aaron has had many opportunities for learning functional skills which will help him live, work and participate in the community. But more importantly, he has had opportunities to be “included as a regular student.”
There were some who wondered why a kid, who can hardly talk, much less sing, would practice and perform on stage with the school chorus?
Why someone who has severe balance and flexibility problems would try to participate on the cross-county and track team?
They wonder if it be would have been safer if Aaron rode the “handicapped bus” with an extra aide, instead of the regular bus with his brother?
They will never understand why we hate Special Olympics?
These parents, students and community members can’t figure out what could Aaron possibly get out of an assembly, or six minutes in regular homeroom?
The answer to most of these questions then and now is really WE Don’t KNOW!
The schools are changing the future
Aaron has gifts, strengths and talents and when given opportunities for learning–determination and pride. We do have observations.
Each time a schoolmate says, “Hi” and forces Aaron to give eye contact, each time a teammate said, “Go Aaron, you can make it!” or gives him a high 5–it is a victory.
Each time they see Aaron make it over a creek or down a hill we celebrate.
Every time they see him complete his vocational job stacking juice cartons in the lunchroom, sorting the silverware, filling the pop machines–it is a value enhancing experience. Aaron can learn to do jobs, that if he didn’t do them, someone else would.
This year Aaron’s picture is in the yearbook next to his brother’s. He and Tommy’s picture is in also with the athletes for Cross Country and Track. A First!
A general education high school student cared enough to help Aaron participate in a bowling league. And then, he took him to the Eighth Grade Dance whose theme was “That’s What Friends are For.” A First!
Aaron’ name (granted it was a name stamp) was on the class t-shirt. A First!
Aaron got a school letter in cross country and track, including being in the team picture. A First!
Aaron got his first paycheck from his vocational training site, Grote bakery, allowing him to become a taxpayer. A jump-up-and-down first!
A whole lot of Learning
To me, these shifts in school philosophy, values and focus on inclusion are every bit as dramatic as the Berlin wall coming down.
In the current evolution to merge special and general education, to change special separate classes into a system of inclusive classes with support services for ALL children–the new ideas, opportunities, choices, risks and freedoms are truly exciting.
Hopewell Junior School has given Aaron and Tommy the chance to be winners. The chance to show that sometimes the biggest lessons are not just in the classroom.
Their success has been a victory.
Hopefully, in this human race, our world will become a better place because of the mix of people who grow up more fully with the experiences of community inclusion.
Thanks for your continued support. Thanks for making Hopewell—a Well of Hope.
The Ulrich Family
Epilogue: 20 years later
Junior High turned out to be one of the best times in Aaron and Tommy’s lives. They both had caring teachers who looked at each of their individual needs. I wish we could find out what memories the other students had of their time with Aaron and Tommy in cross-county, track, bowling, choir, gym… I bet they would have some funny stories. I wish them all well.
ps. We often think of how the students are going to grow up and be the next voters, taxpayers, citizens… but we often forget the school staff also evolves. Aaron’s teacher, Miss Lee went on to become a district supervisor and Dr. Taylor, the prinicpal, is the current Superintendent of Lakota. I like to think their experiences with Aaron and Tommy influence who they are today.
Keep Climbing: Onward and Upward
All my best,
Were kids with autism and severe disabilities included in your school? Do you have any thoughts to share? What do you think the future looks like?