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A New Year of Learning

BACK to SCHOOL Article 2

To celebrate the new school year here are some of my favorite posts.
Article 1:

Why Do We Go to School?

Article 2:

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.

YOUR TURN

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?

Comments

Please leave a comment so we can celebrate this new year of learning.
What are you thinking about as the school year begins?

Keep climbing–onward and upward.

All the best,

Mary

Related Posts:

IEP Videos

Partners in Policymaking

Hope for Families of People with Disabilities|Bob Perske

Hope For the Families

Hope For The Families

Robert and Martha Perske

At one of my first TASH (then The Association for Persons with Severe Handicaps) conferences, I heard Bob Perske speak about Hope for the Families. His book, by the same name, helped me make sense of our family’s new life as parents of a son with the labels of intellectual disabilities, autism and more.

Bob Perske has been one of the pioneers for people with disabilities and their families. In Parallels of Time Bob Perske is seen pictured with giants in our field. He has written many terrific books including Circles of Friends and Unequal Justice, his current work with people with intellectual disabilities caught in the criminal justice system.

Bob is an amazing minister, speaker, writer and just great person. People with disabilities and their families are fortunate to have him in our lives. Martha, his wife, uses her talent to create pictures which spread joy and a vision of inclusion across the world.

Below is one of Martha’s pictures and the introduction to Hope for the Families which I have passed along to my friends, my classes, and anyone who would read it.

Two Friends

Two Friends by Martha Perske

Hope for Families of People with Disabilities

Not so very long ago, you and I were conditioned to perceive persons with handicaps as deviants. They were seen as…

Possessed by evil forces

Carriers of bad blood

A drag on the community’s resources

The products of illicit sex

Subhuman organisms

Too ugly to be seen in public

Objects to be laughed at

A Group that would outbreed us

People with contagious sicknesses

Sexual monsters and perverts

Children who never grew up

Our parents and teachers conditioned us by what they said—or didn’t say—to feel uncomfortable around hose imperfect people. We were led to believe that if we got too close to them, something evil would rub off on us.

Consequently, persons with disabilities were condemned to struggle against TWO handicaps. One was the actual handicap. The other was he additional wounding they received from our prejudices.

Wasn’t the handicap itself enough? Why did we have to cripple them further?

Let me offer one theory to explain such behavior:

Once we believed fiercely that the world was becoming better and better.

And in keeping with this belief, everyone was expected ultimately to develop…

A pure heart

A brilliant mind

A beautiful body

A successful marriage

A high-status job

And live in a perfect society.

Then along came a few defenseless persons with obvious physical and mental handicaps. Their presence rattled our plans for a perfect world as a high wind rattles a loose shutter. We didn’t like that, and the result was that we could not stand to have them around us.

World War II

Then something happened. One country, in an effort to create a super race, started a world war. By the time it ended, the minds of all humankind were trying to comprehend the terrible things some groups of human beings had done to other groups. All of us tried to understand what had happened in places like Buchenwald, Auschwitz, Hiroshima, Nagasaki, London, Bataan, and Corregidor.

After World War II

After World War II, our belief in the gospel of world perfection began to fall apart.

And, we were reminded of some terrible facts.

All of us have gaps in our bodies and minds.

All of us are unfinished.

Some of us can hide our deficiencies better than others.

None of us will ever achieve perfection.

Those of us who think we are closest to perfection may be most likely to drag the human race to new lows.

Today we do not know whether the world is getting better and better—we only know it is getting more complex.

And yet it is an astonishing fact that humankind’s healthy interest in person with disabilities began to mushroom after the Holocaust and the Atom Bomb. One cannot help wondering if there is a connection.

Robert Perske Hope for the Families: Abingdon Press, Nashville, TN.1981. Click here for Robert Perske’s website.

Today, advocates in Ohio, Wisconsin, Indiana and other places around the country are asking the legislature to preserve Medicaid and other programs for people with severe disabilities. The crucial support programs our children need to survive are at risk.

Money is always scarce, but as Bob points out, we have made progress in our values and experiences of including people in the community. We have to believe in hope and better futures for our children.

I am reminded of two quotes:

“Those who do not learn from the past are destined to repeat it.”

“A measure of a society is how it treats its most vulnerable people.”

As parents we understand budget cuts and are even willing to concede progress will be slow, BUT we expect progress!

If you found this interesting you might also like a related article about Remarkable Parents who Never give up.

Keep Climbing: Onward and Upward
All my best,

Mary

What’s Your Take?, Be Brave and Share

Do you think our society values people who are different or have special needs? or, are we still just a drain on the system and resources? Do you think people with disabilities have two handicaps?

If you like this, please retweet and share with your community. Thanks.

Related Articles:

Unequal Justice| Bob Perske

Bob Perske| The Song of Joe Arridy

A Comparison of the Service System and the Community

2012 Article on Joe Arridy “Here lies an Innocent Man”

Special Education Inclusion: Blog Radio Interview Plus…

My Superstars

My Superstars

Special Education Inclusion

Dr. Annie Abram interviewed me about Special Education Inclusion on her weekly blog talk radio program: “Ask Dr. Annie Abram.”

Dr. Abram talks about “Parenting Across Generations” and has been doing several topics on autism.

Check it out. Tell me what you think in the comments section. It really has been a journey for Aaron–a person with a disability, for me–the parent of an adult with a disability, and for our family. And, the choices and decisions we made when Aaron was young definitely influence our choices and decisions now that he is an adult. In my heart I know we took the road less travelled and it demonstrated to the world that inclusion is a civil right–and Aaron is a full citizen.

Listen to internet radio with Annie Abram PhD on Blog Talk Radio

Inclusive Education
Expecting Academic Achievement in General Education Curriculum

April 25, 2013
2-3:30 p.m. ET

This interactive training session provides teachers with a structured time to think and plan to enhance their students’ participation in the general education curriculum. Many teams have become outstanding supporters of inclusive education. However, what are the students’ goals in that setting? How much involvement do they have with the general education curriculum? What are the goals for the student’s academic achievement? Have we fully considered all the ways the student can attain access to and demonstrate an understanding of the general education curriculum?
Presented by Stacey Skoning, University of Wisconsin Oshkosh, and Denise Clark, University of Wisconsin Oshkosh.

TASH Members $50 (Individual) $80 (Group)
Non Members $70 (Individual) $100 (Group)

This is an inexpensive way to get the latest information for an inservice or parent group.

Check out TASH for more information:

• Thriving in Transitions: Self-Directed Living, It’s Never Too Late! (Community Living)
Thursday, May 9 @ 1 p.m. ET
• Building and Sustaining our Communities through Time Bank Exchange (Community Living)
Thursday, May 16 @ 2 p.m. ET
• An Overview of Person Centered Planning: The State of the Art (Community Living)
Thursday, May 30 @ 2 p.m. ET

———————————————————–

Free Ideas for Inclusive Classrooms

If you want inclusive ideas for your child or your classroom, Paula Kluth is the best. Sign up for her blog. Paula Kluth

As always, your thoughts matter.

Keep Climbing: Onward and Upward
All my best,

Mary

Other Blog Radio Interviews:

When Schools Say NO to Inclusion

Successful Inclusion

Building Community: one grocery trip at a time

Day 261: Shopping Haul
Creative Commons License photo credit: crimsong19

Building Community: One Grocery Trip at a Time

With Aaron, my son with the label of autism, every trip to the grocery is an adventure.

Before we go, I usually do an ecological assessment (click here) and use some of the skills Aaron learned in his functional curriculum when he was in school.

Establishing Routines

Over the years and with lots of practice, I know what Aaron likes and dislikes. I try to make the shopping trip a good experience for both of us.

We try to go in the morning when the store isn’t crowded. We’ve developed a system where I walk in front of the cart making sure there is no person or display in the way. Aaron then follows pushing the cart with both hands on the handle.

Aaron is really good at following and knows to stop when I stop. He seldom bumps other people or the displays. This is a skill we have worked on for years and practice every week. I am really proud Aaron can do this.

We usually go to the same store.

That way Aaron is familiar with the physical space and layout. He knows the grapes and carrots are on the right front, the bread is in the right back, and after we pick up the milk and yogurt on the far left we will head to the checkout lanes. We usually only buy about ten items so the wait in line is short. We try to build a routine and structure into the experience.

We try to build a relationship with the store personnel.

This store was only a mile from where Aaron went to high school but in the suburbs we rarely see anyone we know. One of the baggers used to be in the special education program. She does a good job and always says hello. Some of the regular shoppers talk to her by name. She is one of our special ed. success stories and has been employed for over 10 years.

But I never know what’s going to happen.

Yesterday we went to the grocery near Tommy’s house because we wanted to let his dog out for him. Even though it was the same chain we always go to, the store was set up differently. STRESS.

I thought noon on a Sunday would be okay, but it was packed and everyone was in a hurry because the football game was due to begin at 1 PM and the only way to survive a Bengal game is with lots of beer and snacks. STRESS. STRESS.

Being ready for surprises

Aaron did pretty well. We got our groceries and went to the car. I was putting the bags in the trunk when Aaron started pounding on the roof of the car next to us. He’s never done that before.

The young man was getting his two young daughters out of the passenger side. He looked up and yelled, “Hey, stop that!”

Quickly I grabbed Aaron and was about to get him into his seat when Aaron pushed me away and again pounded on the top of the car. This time the guy came over to our side of the car.

I started to apologize when the guy said, “Aaron, is that you?”

Aaron gave him a side-ways glance.

I was stunned and didn’t quite know what to say. I looked at the guy and he looked at me, and he repeated, “Is that Aaron?”

There wasn’t much room in the space between the two cars. I took a deep breath and turned Aaron toward the young man. “Aaron do you know him?”

Instead of punching Aaron, the man gave Aaron a high-five.

I fumbled out a, “How do you know Aaron?” and the young man said they went to high school together. He said he used to come into Aaron’s class and take him to the gym. He said he and Aaron used to eat lunch together.

He touched Aaron’s arm and guided him over to the other side of his car and introduced Aaron to his two children who were about 5 and 3 years old. He told them Aaron was a friend from school and then had Aaron give them each a high-five.

Aaron was strangely quiet. He patted the younger child on the head and said, “Ahh.”

I thanked the man for saying hello. He said his name was Todd and he asked a couple questions about where Aaron lived.

We both talked about how Aaron must have recognized him and since he didn’t have any words, he used the pounding on the car to get attention. We both thought that was very clever of Aaron.

Finding More than Groceries

When we worked so hard for inclusion for Aaron in the public schools, we dreamed that Aaron would have a community of people who knew and accepted him. People who could see his gifts and strengths.

Every once in a while we have a unique success story that makes all that hard work worth it.

We’ve never expected big monumental experiences. This magic moment where Todd remembers Aaron and thinks enough of him to want to introduce him to his children–that’s big enough.

YOUR TURN

This is my 50th post. I hope you will check out a couple of the other articles and share your thoughts.
Do you have any experiences to share? Any magic moments?
Do you think the future will be better for adults with disabilities because of inclusion in the schools?

Keep Climbing: Onward and Upward

All the Best,

Mary