To celebrate the new school year here are some of my favorite posts.
Why Do We Go to School?
A New Year of Learning
This is one of my favorite stories–an updated article from when Aaron was 8 years old and Tommy 6. Enjoy!
Kids in a Box
It was the weekend before school began and Cincinnati was sweltering from a week of 90 plus temperatures with over 50% humidity.
And partially because most of our neighbors don’t have air conditioning, and partially because we enjoy each other’s company, all the moms were sitting on the porch steps waiting for the street lights to signal the time for baths, bedtime and the end of summer.
Several of the children were busy with final rehearsal for the “Ralph Avenue” version of Snow White and the Seven Dwarfs. Erin was the wicked queen, Allison the prince charming and the younger children Eric, Patrick, Tricia, and my son Tommy were assorted other characters.
The kids ran in and out of the yards wearing their winter caps with the tassels dropping over, trying to look like dwarfs.
After a while, the large cardboard box from Allison’s new stove changed from being used for the stage scenery for dwarfs to a cool hideout for cowboys.
Patrick’s mother was telling us a newspaper reporter stopped by her house to do an interview with “a new kindergartner.” It would be a three part series on Patrick’s impressions before school began, during in January, and a third article after in June.
The poor reporter had a time of it because every time she asked Patrick (5 yrs.) about the imminent kindergarten experience, Eric (6 years and a kindergarten veteran) would give his answer, including a heated discussion about, “Who would be picked for the cookie passer?”
It was so much fun to be watching the kids and hanging out with other mothers but the beginning of school is very traumatic for me because of our continuing problems with the special education school program for my son.
Aaron has the label of autism and severe intellectual disabilities. A new year signals the beginning of another year of battle for inclusion.
But maybe because it was too hot and maybe because I was surrounded by friends, I continued to sip my ice tea and enjoy the normal conversation of my neighbors.
Patrick said his favorite football team was the Jets. His brother Michael, age 3, noting the adults’ interest, announced his favorite team was “the helicopters.” Jets—helicopters, why not?
Tricia’s soccer team won every game last year with a very gentle and knowledgeable coach. This year they won their first game but the new coach yelled and screamed and was upsetting the team and their parents. The parents wondered if victory was worth the price?
Moments that make parenting fun
Tommy went for his school physical and when the nurse asked him to urinate into a cup he burst into tears.
I pointed to the counter and its rows of labeled cups and told him everyone—even grownups–had to do this.
Sobbing he said, “Okay—but I won’t drink it.”
Later he asked, “Mom, why do they need a toilet in there is everyone pees in a cup?”
My friends and I exchanged sale prices on jeans and problem solved about the best backpacks and gym shoes with shoelaces that didn’t need to be tied.
We laughed, reminisced about summer and shared the thunderstorm warnings.
Eric’s Mom passed out popsicles.
All this time Aaron was walking up and down following the crowd of “dwarfs” as they flitted from yard to yard. He didn’t get a lot of direct attention, yet he was part of the group. For a time they all put on football helmets and Aaron went over, knocked on them to hear the funny sounds and everyone giggled. Aaron got quite excited and even though he is tactily very defensive he allowed them to place the helmet on his head, for a minute anyway.
Tommy brought out his golf clubs and soon Eric and everyone tried a few swings hitting a large flowered ball. Once Aaron was too close and thoughtfully Patrick took his arm and helped him get out of the way and Eric adapted and shortened his swing.
Then the crowd was back down the street again. This time Aaron waited for the abandoned golf club. He bent over and balanced perfectly picking the club out of the grass. He began in his own way to hit the big plastic ball around the yard. Then he too lost interest and headed back down the street to find the other children.
Four years ago, the same day we moved into our home, a group of people on the other side of town filed a lawsuit to protect their neighborhood from the “danger’ of a proposed group home for people who were labeled mentally retarded. I remember my worry of meeting our new neighbors and their reactions. What would be their concerns, fears? Would they allow us into their community?
There have been awkward moments when Aaron would do something inappropriately. But then “normal” “regular” young children have their good and bad moments like the rest of mankind.
Now Aaron was just Aaron and each neighbor had worries about jobs, children, families—the usual. We were a part of their neighborhood, their community.
As the sky darkened and the parents began to gather up the toys, football helmets, golf clubs and the talk again turned toward getting the children to bed so they would be fresh for the first day of school, I couldn’t help but think of how children and adults learn.
We use our creativity for Snow White costumes and playing with discarded boxes. We use our problem solving skills to find sale priced jeans to stretch our budgets. We use skill development including repetitive drill and practice for playing soccer and for picking up golf clubs out of the grass. We build on our experiences and associations whether they are jets and helicopters, cups and drinking, or how we feel about people who are different than we are. We also learn from people, some of whom are rough coaches, some parents, some newspaper writers, and some—neighbors.
School may begin tomorrow but in our neighborhood a whole lot of learning happened tonight. And perhaps, just perhaps—because Eric and Pat and Tommy will grow up with their incidental learning, experiences, associations and relationships with Aaron, the years of battles for belonging, full inclusion and citizenship will be shortened and our war for acceptance will be won.
Sometimes the make-believe lessons of Snow White overlap with the real world lessons of our family. After all, wasn’t Snow White the one who sang: “No matter how your heart is grieving, if you keep on believing, the dream that you wish for will come true.”
Keep believing, keep dreaming and a Happy School Year to All.
Has our dream of inclusion for all kids come true? Certainly more children now have the opportunity. Aaron, Neil Roncker, Jenni Wetzel, Julie McMahon–they were the first kids in the doors of the public schools in Greater Cincinnati. I believe with all my heart they touched the lives of their peers who are now grown and sending their own children off to school.
And some of these young parents became the doctors, teachers, bus drivers and parents of kids with special needs. Our lives really are all part of each other, all part of the circle of life. I hope this new generation feels better prepared. I hope the schools their children attend are also better prepared. I hope our communities are more welcoming to those who have differences.
What dreams are we still wishing for? What lessons are we still learning?
Please leave a comment so we can celebrate this new year of learning.
What are you thinking about as the school year begins?
If everyday ALL children go to the same schools, get to know each other on a personal level, share time on the playground and lunchroom and bus and in the classrooms–there are valuable lessons in just being together with people who are different than we are.
And maybe one of the lessons is–we are not so different–inside we are the same.
What do the history books say?
In the late 90s, I was teaching education majors who wanted to be teachers.
I took my Introduction to Exceptionalities classes to our university library which had a collection of textbooks being used in classrooms all over the country.
Their assignment was to examine one of the high school textbooks in American History, Problems in Democracy or World Histories and look for pictures or references to people with disabilities. Many of these college sophomores were able to find the same textbooks they used when they were in high school.
Out of the 20 different textbooks they evaluated, no textbook had more than four references to anything about disabilities.
The references, in a sentence or two, referred to:
Helen Keller was deaf and blind and traveled in the Wild West Show, President Roosevelt used a wheelchair, and the American with Disabilities Act passed in 1990. In several of the textbooks, an additional reference said, “deinstitutionalization caused many people who were mentally ill to become homeless” with a picture showing a man sleeping on a park bench. That was it! And the last message was not positive.
People with Disabilities are often Invisible People
People with disabilities have been basically excluded and invisible in the traditional curriculum.
In a culture that asks its children to “not stare,” and “beware of strangers” we have taught our children to ignore and avoid people with disabilities. Many churches only teach about praying for miracle cures and giving charity and alms to the “handicapped” (word from “cap in hand”). So, though there has been some progresss, it is not surprising our textbooks still avoid the whole conversation of disabilities and differences.
The increase in college “Disabilities Studies” majors and minors across the country is a strong beginning and step in the right direction. Kudos to those who are pioneers in this new movement. The recent Tribute to Ed Roberts is an example of people who care recognizing the contributions of great Americans to the freedom and inclusion of all.
Yet, I would bet if we repeated this textbook assignment today in 2013, there would still be a scarcity to references about people with disabilities and of all minorities; though I think the textbook companies are responding to some of the criticism.
What is the purpose of education?
So besides becoming informed citizens, what is the purpose of education, except to prepare each of us in the attitudes, vocational, domestic, community, and leisure skills we need to function successfully the 50-60-70 years of the rest of our lives?
How can we learn to make choices? To learn to ask questions? To learn to solve problems? To learn to work and live together? To learn about ourselves, our ways of making sense of the world? To learn about diversity?
Would our government officials act differently if they followed Thomas Jefferson’s ideas on education? If they went to school with people who had disabilities or had differences?
Schools and Parents
One teacher, one therapist may be great for a year or two but professionals come and go. The parent is the constant in a child’s life. We know our children the best and are the experts on our child’s likes and dislikes, their learning styles and behavior in the home and community. We know our child’s history better than any psychological profile that sits in the school office. We know our child is more than the words on their Individualized Education Plan (IEP).
Our role as parent is a difficult one because we represent the continuity of our child’s life. We know their past, we are part of their journey. But are we willing to risk our children learning about diversity and differences?
There are many parents of children with disabilities who are afraid, it is understandable, but will that fear hurt our children and the next generation of citizens.
Each day parents are challenged as “care managers” to insure cooperation and creativity among those who provide service to our children.
Each day, as our children climb on the school bus, they are a step closer to being adults. They step on the magical bus into their future and the future of our country.
Each day, we must ask ourselves: “Are the skills they are learning going to prepare them to become productive adults, caring and responsible citizens?”
Magic Bus Ride?
The school year is a precious opportunity for new growth. An opportunity to forget the hurts of the past, no matter how difficult. A new school year is a fresh start.
Build that future dream with much hope and picture the magic bus that can take you and your child into a year of wonder, new adventures and new learning in a land of diversity. We learn from our children and they learn from us, and that is also magic.
Wishing you a great year full of magic.
When you were in school, how did you learn about people with disabilities, differences? Do you think there are things to be learned by sharing your lunch with someone who doesn’t talk with words? With someone who uses a communication board to talk? With a classmate who learns differently? With a friend who just happens to have a label of disability?
There are many legends around the origins of the Olympics. But the main idea was countries and individuals would meet every 4 years and set aside conflicts–and this shared experience would lead toward greater understanding and fewer conflicts.
Many believe the ancient Olympic games began with a foot race.
The 2012 Olympics were held in London, England. And, a footrace is not so simple. Turns out, the definition of a “foot” was a source of conflict.
Even with later personal tragedy, The Olympics story of Oscar Pistorius from South Africa is an inspirational lesson about the inclusion of people with disabilities.
Check out this video, “The fastest man with no legs” who uses his “blade runners” to race in the finals of the Olympics.
Yes, he races in the segregated Paralympics, but also in the inclusive regular Olympics.
This is an example of inclusion, self-advocacy, the power of a supportive family and an exceptional adult with disabilities.
I think this is also an excellent example of what the Olympic Spirit is all about. The Greek founders might never have envisioned this sort of story, but I’ll bet they were cheering up on Mount Olympus as Oscar became one of the fastest runners in the world.
If you have feet, you have tendons and muscles which give a “spring” to your step.
If you don’t have feet, you … what—sit at home? OR…
You only have the choice of a segregated Special Olympics or Parolympics event?
As Dennis Burger says, “I always think it’s ironic when officials claim an unfair advantage by a guy with a prosthetic device. Go Oscar!”
Why is it that those of us who would never spend 10 seconds playing or watching ping pong, or skeet shooting, or footraces… voluntarily devote our precious time to these events on TV?
Why is it we choose to root for one team or one person?
With all the important events happening in the world, why would the evening news start out with the country’s Olympic medal count?
What is the magic that draws our attention?
I think the answer has to do with the concepts of “Us” and “Them.” The answer is rooted in our deep psychological need to belong.
We can wonder about the concepts of nationalism but like it or not, we are part of a tribe, a nation, we are part of “Us.”
And when the collected ego of our nation wins, we win.
So we say, “Go USA” or “Go England” or “Go Canada” when we really don’t care one bit about archery or who can do the backstroke.
The Need to Belong
In Maslow’s famous “hierarchy of needs” belonging and having people who care about you is critical to survival–more important than how many skills you have or self-actualization. Sometimes this means being part of a tribe, sometimes being part of a family, sometimes part of a church, school or … nation.
Or, sometimes sharing a bond with someone with a disability.
So when we hear about a runner who uses blades because he has no feet, or a woman who only has one hand and is a table tennis champion—suddenly we care about them.
We switch our allegiance and transfer all our goodwill to these courageous individuals because they have a disability and are part of our TEAM INCLUSION. We don’t know them personally, we aren’t a part of their country, but they are part of our heart.
They prove that all our daily advocacy efforts are worth it. That the dream of inclusion can be real.
Absolutely gorgeous day for a family reunion at the swim club, mid 80s, no clouds, not even any bugs to speak of. This is my third post about Going to the family reunion, or not? In post one (click here) I talked about planning and doing an evaluation of what my son Aaron, who has the label of autism, would need in terms of modifications and accommodations to feel welcome and included. In part two, (click here) I wrote about the layers of social systems that are part of each family. Today in part 3, I’m going to talk about the actual activities and events that happened.
Informal Support Systems
Tommy (Aaron’s brother), Ana, Baby Isabella and Ana’s parents from Brazil arrived about the same time we were unloading the coolers, so they helped me carry the stuff and guide Aaron through the parking lot. My husband, Tom had to work so he had to miss this year. If Tommy’s family wasn’t here to help, Aaron and I wouldn’t have gone. I figure there were about 60 relatives ranging from my mom age 88 to Baby Isabella, one year.
Aaron started repeating his, “You Okay?” routine, and everyone came over and gave him a high 5, patted him on the back, or laughed and said, “Yes, Aaron we’re okay.” They were welcoming Aaron on his own terms. Sometimes Aaron looked at them; sometimes he didn’t. He said, “You okay?” about one time every other second. So that’s a lot of “You okays.” Everyone just took it in stride and went back to what they were doing.
Setting up the routine
In past family reunions, everyone swam and then ate about 6pm. So we arrived about 4PM to find everyone eating. Oops.
Even though we split an Arby’s sandwich on the way to the swim club, if everyone else is eating, you can bet Aaron is going to want to get a plate ASAP. I introduced Ana’s family the best I could, but getting Aaron settled and fitting in the social setting was priority one.
Almost immediately, Aunt Ann started putting melon balls on Aaron’s plate. Some male relative who I didn’t even know had the brats and metts ready to go, so with a little help, Aaron was happy as an ant at a picnic—aarhh. How Aaron melded into the group in the first ten minutes makes all the difference.
While Aaron was busy eating, the rest of the family settled in, made introductions and even though Ana’s parents’ first language is Portuguese, everyone was excited that they were here for a visit. Various Aunts, Uncles, Cousins, second cousins and relatives I swear I’ve never seen before, were all very gracious. Ana’s parents are just naturally friendly and their English is incredible. (They learned it by watching American movies and taking English classes in high school.)
As soon as Aaron finished eating, Aunt Ann cleaned up Aaron’s spot. Uncle Steve and Tommy offered to take Aaron swimming. I didn’t even have to ask. They helped him put on sunscreen, take a quick trip to the bathroom and then just whisked him off (of course Aaron doesn’t really whisk anywhere).
Terri, my cousin who organized the whole event, told us that the neighborhood swim club was just given a ramp by the Jewish Community Center when they built a new facility. (Note to self: next year do not take off Aaron’s shoes until he gets to the ramp—the sidewalk was too hot and he had trouble walking to the ramp.)
Aaron, Tommy, and Uncle Steve went in the big pool. Ana, her parents and the baby went to the baby pool. I took pictures and held my breath. Aaron had a couple tough moments, but he calmed himself by biting his hand and then was fine.
I got to talk with a couple people, and watched everyone playing in the water. Aaron can swim pretty well. He does this sort of dolphin movement and though he doesn’t close his mouth he can swim from one side of the pool to the other. The lifeguard watched Aaron and his team the first couple minutes and then when everything looked in control, he relaxed and just concentrated on the entire pool as usual. After about a half an hour, other relatives and Ana’s parents joined everyone in the big pool. Baby Isabella had a great time meeting new cousins and playmates. The toys went in and out of the pool, the kids stood up, fell down—all was well with the world, just a sunny day in paradise.
The Circles of Life
Everyone caught up on the recent engagements, school arrangements, camping trip, new babies… all the gossip and family changes. Ana made a Flan dessert which was a big hit. Someone brought about five of those blue ice containers and put them together like a cold plate—instead of hot plate—and I thought that was very clever. Everyone ate, traded stories, pictures, and just had a great time.
Uncle Ed’s memorial dinner was the next day, but my cousin Dan, who is a Bishop, came and ask about how Aaron was doing. How was Tom doing? (When someone in the family isn’t there, they are missed.) We got to tell the story of how Tommy surprised us by moving back to Cincinnati last year… it was just normal, everyday family talk.
Because of people helping out with Aaron, it was an enjoyable day. We left after 4 hours, just long enough.
Worth the price of admission:
My favorite moment: One of the dad’s was holding his two year old baby in his lap. The baby had an angelic face and a devilish grin. They were relaxing after a swim when the baby suddenly reached up and grabbed the hair under his dad’s arm. OUCH! His dad—I mean you could hear him gasp and see his eyes tear up-couldn’t reach his son’s hands. Every time he tried to lower his arm, the hair was pulled tighter. We were all laughing so hard everyone’s body was shaking up and down in their seats. Grandma looked like she would need oxygen. The more dad tried to pull the baby’s fist away, the tighter he squeezed.
I thought the life guard was going to blow the whistle from all the hoots and hollers. It was a memorable moment that will become an urban legend in our family as the repetitions help the story grow. (Remember, Mark Twain said to never let the truth get in the way of a great story.)
All our planning worked. Aaron and all of us had a great time. He belonged. We all had a chance to reconnect to all these people who are connected by blood, but now are also connected by new memories.
Moral of the story: shave your armpits before going to family reunions:)
Did you ever think of all the modifications and accommodations we just naturally make for babies, seniors, people with disabilities? Baby bottles need to be kept cold and then heated, Grandma likes soft foods, Uncle Charlie always likes a ball game on a radio or TV– we make these kinds of modifications all the time just because we want to make the people we love happy and comfortable.
And what about us regular folk, we also use modifications and adapt environments and “things” all the time. We bring our lawn chairs, sun screen, ball gloves to protect our hands… we like our hotdogs with… spicy mustard, or ketchup, or sauerkraut or well done or on buns, or not …?
We don’t think of these small ordinary “things” as adapting a hot dog? Because we are all normal, yet it is what we are doing.
But putting in a ramp or curb cuts–well, even if we normal folks use it, it is er, handicapped or special or an ADA adaptation.
When builders use the principles of “universal design” and blend the adaptations into the everyday way we access buildings or swim pools… then parents won’t have to think of ecological assessments before they go to a family reunion, everything will already be in place.
ADA is good for all of us. i.e. Now most grocery stores have accessible entrances. Grocery carts and children’s strollers and people in wheelchairs can just go through the front door. And, since it is now so common, no one even notices that the entrances have changed. They meet “universal design” for EVERYONE.
The world is becoming more accessible and just in time. Because me and all my relatives are getting older and like it or not, we will soon join the ranks of the “disabled” and our life activities will depend on all those loving people around us, and those universal designed environments.
Tell us in the Comments
What are some of the things you do to make your family reunions more inclusive? What do you think of Universal Design? Is ADA just another government example of “Big Brother” and forced rules and regulations?
Keep Climbing: ONward and Upward
All my best,