Posts Tagged ‘special education’
Are they adorable, or what?
Aaron and Tommy always loved Halloween. Me too. The holiday is such a great way to build an inclusive community.
There were some segregated, handicap only Halloween parties for just kids with autism and developmental disabilities, but I wanted Aaron to be part of his community. With a little preparation and a lot of team effort it worked.
When Aaron was 8 and Tommy 6 years old we lived in a great neighborhood with lots of kids (click here for related story) and Halloween was something special.
In the picture above, check out Tommy’s hand. He is holding the ghosts we made and handed out for Trick or Treat.
Task Analysis: Tootsie Pop Ghosts
We took a Tootsie Pop, wrapped a white tissue around the round top, tied it with orange yarn, and with a magic marker added two eyes.
Cute, something homemade and the kids loved them.
One of the most important concepts in special education is the idea of partial participation. If someone can’t do the whole activity, could they at least partially participate and do some smaller part?
For instance: Aaron, Tommy and I all worked on the Tootsie Pop Ghosts for a couple evenings before Halloween.
Aaron’s job was to take the tissue out of the box.
In addition, sometimes he would hold the stick of the Tootsie Roll Pop while Tommy added the tissue. My job was to tie the yarn. It was a team effort, an inclusive experience.
We each did a part of the whole project. We each partially participated.
Aaron contributed what he could do. He could pull the tissues out of the tissue box independently.
He could hold the stick with assistance, and only for about a short time. Because he was a valued team member he contributed as long as he could.
Tommy, on the other hand, could have pulled out the tissues as well as most of the rest of the tasks. But what made this activity fun was the fact we all worked together. We wanted everyone to play their part.
Tommy had more skills than Aaron, and more tasks in the activity. He got to choose when he did them, but they had to be done before Halloween Day. I could have forced him to finish all the eyes in one sitting–but then it would have been work and Mom’s timeline.
Instead he got to make his own decision and chose to finish them while he watched The Transformers, Electric Company and Scooby Doo on TV–his timeline.
He finished up the ghosts by adding the eyes and jamming the stick of the finished ghost into a shoe box lid so the ghosts would “float.” He chose the time, was self-motivated and had the satisfaction of seeing the job to the end.
We made enough ghosts so both Aaron and Tommy could take them to their classes at school. They were always a big hit and I think they were proud they worked on them.
On Halloween night, Tommy went with all his friends in a crowd of ghosts, clowns and monsters. He was gone for hours and filled his pillow sack as full as he could. One of the neighborhood mothers kept an eye out for Tommy.
Usually Aaron and I would go to the immediate neighbors while Dad manned the front door of our house.
One person could not be three places at once: with Tommy, with Aaron and at the front door. We really needed our neighbor, our community resource, to help us out.
Tips, Sensory Issues and Routines
This particular Halloween Aaron learned about doorbells. We went to each house and I would point so Aaron would know where to press and he would just smile as the ding, or ring, or buzz sounded. He had a great time. Cause and effect. Press the button–hear a funny sound.
The neighbors were always very kind and generous because they knew Aaron. If I prompted him with, “Aaron what do you say?” he would respond, “Thank you” and give them a smile. It really was a way they could get to know Aaron and we could build our community relationships.
We only went to about 10 houses because of all the excitement, plus maneuvering the steps and the dark was a lot of sensory stuff to handle. But Aaron really seemed to understand and enjoy the routine: Go to house…climb up the steps…ring the bell…get candy…say thank you…repeat.
It was a fun night.
What wasn’t so fun was the next night. See, Aaron learned the routine really, really well. Too well.
So, the next day guess what? I was busy taking the groceries out of the car, when I looked up Aaron had somehow gotten to the house next door, rang the doorbell, and was waiting for some candy.
It took me longer than my neighbor to figure out what was going on. She just smiled, reached in her extras from the night before and handed Aaron a chocolate bar. I could have hugged her.
Tommy to the Rescue
Tommy thought the whole scene was hysterical. Our whole family laughed about Aaron’s behavior at the dinner table but we knew we had a problem. How were we going to teach Aaron that Halloween only came one day a year? Why was it okay to do something one day–but not the next?
Tommy came up with the solution. He suggested we put away all the Halloween decorations and candy. And sure enough, it worked. Without all the reminders, Aaron moved on to other things.
This Halloween, Tommy will be taking his baby girl Trick or Treating for the first time. And Aaron, he will be passing out Tootsie Pop ghosts when the neighbor kids come to his house.
Trick or Treat? Comments?
Tell us some of your Halloween stories and memories? Stories of partial participation, over-generalization, community building…
Keep Climbing: Onward and Upward
All my best,
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.
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 football 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.
I hope you will check out a couple of the other blog articles and share your thoughts.
Do you have any community 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,
Robert and Martha Perske
Today we heard the sad news that Bob Perske died. He was an advocate who made a difference. I will miss him.
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.
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
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,
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.
note: Bob gave me permission to print excerpts from his book Hope for the Families.
“If you don’t design your own life plan, chances are you’ll fall into someone else’s plan. And guess what they have planned for you? Not much.” – Jim Rohn
I will soon be celebrating my 66th Birthday. I used to think 66 was old. Now I just think 66 is experienced with a lot of living yet to do.
I wonder what the world will be like when Aaron, Tommy, Ana and even little Isabella turn 66? When I blow out my candles, I’m wishing with all my heart the world will be inclusive. And, we’ll all be part of a caring community who values diversity and individual contributions because together we are stronger.
In Part 1: 1981 Aaron was 6 years old and we outlined a vision of what a happy, successful quality of life would look like for Aaron as an adult. (click here).
In Part 2: 1989, Aaron was 14 years old and we were moving forward. The Plan was updated to take into account the changes in our family, but also the changes in special education, disability services and the world. (click here)
In Part 3: 1998 Aaron is 23 years old and moving out of his parent’s house into his own place with a roommate and 24 hour assistance from caregivers. (Click here)
In Part 4: 2016:
How did we do?
All Dream Plans were built on the concepts of family, community, normalization and inclusion.
Original 1981 Dream Plan for Aaron
Aaron will be educated in a public school with his non-handicapped brother and neighbors. He will have a functional curriculum (see related post) which looks at his needs in his life spaces (vocational, leisure/recreation, domestic, general community functioning). His out-of-school activities will evolve around his family and his own friends, interests and talents. He will be in age-appropriate settings: elementary school ages 5-10; Jr. High ages 11-13, Sr. High ages 14-21, job in the community 21+. He will begin vocational training now, at age 6, so he will be able to perform the job. (If he isn’t able to be a dishwasher, then he can be a dishwasher’s helper, etc… there is some job he will be able to do with success.) At the appropriate time, Aaron will move to a group home to live with others his age. Though dependent in many ways, Aaron will have self-esteem and confidence in the things he does and be a contributor to his family, his extended family, and society.
Current 2010 Dream Plan for Aaron
Aaron was educated in a public school with his brother and the neighbors. After we won our lawsuit with Cincinnati Public Schools, the school district was vindictive and since Tom (Aaron and Tom’s father) was a teacher in the district we decided to move to Lakota School District. Aaron rode the bus to school with the neighborhood kids, he received a functional community based program with some excellent teachers and therapists who used best practice. His out-of-school activities evolved around his family and his own friends, interests and talents. Aaron went to the prom with his friend Jenni, he was on the Jr. High Track and Cross Country team where he earned school letters, he rode horses, swam, went to camp and took summer vacations with his family. He went to family reunions, holiday parties and the high school basketball and football games. He was on an inclusive bowling team and made some friends with the Baseball Team players. He was in the Key Club and had a circle of friends. He received extended school year services. He attended graduation (see related article) and had a celebration for all his family and friends. Aaron went to age-appropriate schools and had a job coach to help him in his job at the police station (vacuuming) and amusement park (watering plants) when he left school. When Aaron was 23 he moved into a house with another person (though he was older) and they have lived together for over 12 years. Aaron is still totally dependent but he has self-esteem and confidence in the things he does. He is loved and is a contributor to his family which now includes a niece and sister-in-law as well as his extended family of grandma and cousins. Aaron votes and is a consumer in our society.
Each one of these sentences is filled with years of work and advocacy. There are a whole lot of buts, buts, and more buts that happened when Aaron turned 21 that we didn’t foresee at age 6….
But considering the mountain we climbed to achieve all of the goals—WE DID IT!
1981 Dream Plan for Tommy
Tommy will be educated in a public school with his handicapped brother and neighbors. He will have a functional curriculum which looks at the needs in his life spaces, (academic, vocational, leisure/recreation, domestic, general community functioning). His out-of-school activities will evolve around his family, his own friends, interests, and talents. He will be in age-appropriate settings. He will make a career choice and pursue training (vocational, university, apprentice…). At a time he decides is appropriate, Tommy will move to his own home, probably marry and begin his own family. He will have self-esteem and confidence in the things he does and be a contributor to his family, his extended family and society.
Current 2010 Dream Plan for Tommy
Tommy went to school with his brother and neighbors. He had a functional curriculum that met his needs. He participated in wrestling, theater, cross-country and track, he went to all the school functions. He was in age-appropriate settings and shadowed adults in careers he was interested in. He began a couple career directions and graduated from Morehead State University with a job in the telecommunications field. He is now a Radio Frequency Engineer working on the new G4 systems. His work experience includes setting up the telecommunications for the Super Bowl and NASCAR events. His bride, Ana, is from Brazil and now they have a baby girl who is 18 months old. Tommy sees Aaron and his extended family every week. He is remodeling his house with his friend. He has self-esteem and confidence in the things he does and is a contributor to his family, his extended family and society.
Tommy is on his own. He has his own responsibilities and we help him every way we can. He is interdependent only because he wants to be. Now he makes his own dream plans for himself and his family. Here is a related article about Tommy and Aaron (Click here)
Aaron… well another post we’ll talk about life after age 22 and adult services.
How are Aaron and Tommy’s dream plans different? At age 6 and age 22 and age 35? age 66? How did they turn out? Were they much different than the plans your parents made for you? Much different than you make for yourself? What would you say is the lesson?
Keep Climbing: Onward and Upward
All the best,