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Posts Tagged ‘special education’

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

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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

Functional Curriculum: use it or lose it

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

Article 1: Why Do We Go to School?

Article 2: Back to School| A New Year of Learning

Article 3: Back to School| What is Inclusion?

Aaron learning money skills

Aaron learning money skills to use in store

Functional Curriculum

When my son Aaron was in school, shopping was part of his curriculum. From the time he was ten years old he went to the bank and grocery one day a week as part of his special education school program.

This was best practice and came from the work of Drs. Lou Brown, Alison Ford, Sharon Freagon and many others. The idea of a functional curriculum for people with autism, intellectual and developmental disabilities is:

* it takes longer to learn skills, so let’s make sure we teach important skills and not waste their time on dumb stuff

* it takes lots of practice, so let’s give the student lots of opportunities and trials

* use it or lose it, so let’s make sure the skill is something the student will need their whole life

* transition from school to adult life will be smoother

* we only teach skills that if the person didn’t do it, someone else would have to do it for them

* the ability to purchase items would give the person more dignity, self-esteem, self-determination skills and choices in their life

The way it worked was each week, Mom sent in a check for $10.00 and a shopping list. The class went to the same grocery store (because each store is different). Each student cashed their check at the bank and then bought items from the list to take home.

In addition, students also planned a lunch to be made in the classroom the following day. Each would purchase a couple items for that group lunch. These items were purchased with the classroom credit card.

This functional curriculum was based on the philosophy that Aaron would go to the grocery the rest of his life. Before the school year started the IEP team decided this was a high priority skill because he would need to buy food and other items when he was an adult. If he didn’t learn to purchase these items, someone else would have to buy them for him. If Aaron could purchase the items he would have more choices and say in his life and therefore a better quality of life. (Who wants someone else deciding you can only have Cheerios for breakfast all your life.)

Related Service Staff

The curriculum was designed by the IEP team including specialists and the parents. After all, who would be taking the student to the grocery on the weekends, summer, and after school. And who knew what the student liked better than their parents?

I was in the school a lot and went on many of the community training trips with Aaron and his class.

It takes a Village

The speech and language therapist helped Aaron build picture sequences of “shopping at Krogers,” check-off lists with pictures for grocery lists, and learn to interact with the cashier “Thank You” and give a High 5 to the bagger….

The occupational therapist helped Aaron figure out which coin purse/wallet worked best, learn to pay with the next highest bill, learn how to take the money out of his wallet (hold wallet in left hand and take out bills with right) and after many failures of getting the change back in the wallet–it was decided Aaron should just put the change in his pocket….

The physical therapist helped Aaron figure out how to climb up and down the steps on the bus (hold on the rail with his right hand and count the steps), how to maneuver the parking lot (and yes we had an IEP goal that said with 50% accuracy), how to enter the right door–even if there are two “in” doors,
how to reach the items on the bottom shelves (hold on to the grocery cart with his left hand and reach with his right)….

Depending on the therapists schedules, they might only be involved in periodic assessments, or they could go with the class every week. This was an excellent way for the therapist got to really see Aaron in this environment and practice REAL life skills.

The teacher and assistant teachers went every week with the 6-8 students in the multi-handicapped class. She/he helped Aaron match his pictures to the actual items in the store, find his favorite items and put them in the cart, learning appropriate social skills….

After High School

Unfortunately now that Aaron is out of school, he has lost most of those skills because adult service staff refuse to take him to the store or don’t have the knowledge or support they need. Here is a story about Aaron’s home (click here). It is not the fault of the staff. Some of them are very loving and do a great job.

So I take him every weekend when he is home with us. Here is a story of a recent shopping trip (click here).

Aaron and I are a team and we have worked out our own system. We only shop for about 10 items and Aaron puts the items in the cart. Sometimes Aaron will grab something off the shelf and if it is anywhere close to something he might want, I’ll let him buy it. ie. if it is a bag of cookies or cereal –he can keep it. If it is a box of denture tablets probably I’ll tell him what it is and put it back.

Choices: Quality of Life and “If Only”

If I had the opportunity to change things in Aaron’s life, it would be that adult services used a functional curriculum and adult residential services gave Aaron and others with autism and severe disabilities the opportunities to practice their skills. There is no question Aaron would not currently be LOSING these skills. There is no question these skills would enhance Aaron’s self-esteem and quality of life.

The reason I could insist on these skills being taught and used when Aaron was school age was because of the federal mandate in IDEA. The Individual with Disabilities Education Act said that parents were part of the IEP team and the parents had due process if they disagreed with the school personel. There is no such mandate for Adult Services, no due process for parents and/or guardians. Plus, in Adult Services the staff does not have to be trained or have any teaching license.

As my friend Deb used to say, “When I am made Queen of the Universe” I will declare it. Until then, I’ll take Aaron every weekend and give him as many functional experiences I can.

And of course, I’ll dream of the day I am Queen of the Universe. *smile*

What ifs? Comments?

Any stories about your child’s school experiences preparing them for the future? Any luck with using those skills in their adult life?
Anyone else want to be “Queen of the Universe”?

Keep Climbing: Onward and Upward

All my best,

Mary

Related Posts

Building Community| One grocery trip at a time

It’s a Jungle out there| Inclusion in the grocery store

Kill the Turkeys! Life Lessons for People with disabilities