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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 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.

YOUR TURN

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,

Mary

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”

Mom’s I.E.P. for the Holidays: Individualized Enjoyment Plan

Here is one of our most popular posts. Relax and make an individualized ENJOYMENT plan for your best holiday ever.

Mary

Happy Holidays Everyone

Easy as I.E.P.


Mom’s I.E.P. for the Holidays: Individualized Enjoyment Plan

Want to enjoy the holidays?

Of Course.

Easy as I.E.P.

Don’t laugh. I.E.P.’s were developed because they are good planning tools. Some people are intimidated or challenged by the I.E.P. in Special Education. One way to demystify the I.E.P. process is to use it in our everyday lives. So, stick with me for a minute while we look at how this can work in real life.

Let’s use the Individualized Education Plan to create a holiday planning guide.

The first part is to create your Dream Plan of what you want. Then we plug in the basic parts of the I.E.P.: Evaluation, Annual Goals, Short term objectives, Related Services, Placement, and circle back to the Evaluation for the next I.E.P. for next year.

Dreaming of YOUR perfect holiday

Everyone’s perfect holiday looks different: Grandma’s turkey feast, or make that a roast goose, or Uncle Bob’s ham and sweet potatoes, or a vegetarian, or Kosher, or vegan, or gluten-free …

Everyone has different expectations, traditions, time and money constraints. So forget the Women’s magazines, forget what your Mother-in-law wants, forget what happens on the Food Channel and Martha Stewart show.

We don’t care about “Everybody.”

The beauty of the I.E.P. is it is individualized. It is for You. Not your mother, your children, your boss…YOU! This is YOUR moment, your freedom, just YOU–what do you want?

Action Step 1: Visualize a Dream Holiday

Take a deep breath and picture a smiling yourself surrounded by your favorite people, doing what you really want to do. Ahhhhh.

Are you skiing down a mountain? Are you sitting by the fireplace listening to Bing Crosby? or Lady Antebellum? ….

What would make this a joyous holiday for you–with just the right balance of work and relaxation?

What were the strengths and weaknesses of previous holidays?

Do you want to start any new “You” traditions, new family traditions?

Define your dream plan (see related post)

Feel empowered to do it YOUR WAY. This is your holiday gift to yourself. You deserve it!

Don’t you feel better already? This holiday is going to be the best.

Dream Plan:

1. Take a sheet of paper and fold it into four squares: Wants, Needs, Likes, and Dislikes.

2. Fill in the boxes based on YOUR Individualized choices.

If you are feeling pressure because others are trying to get you to do something you don’t want to do, be polite but tell them to make their own IEP. :) Empower yourself! I know this is hard for me and most Moms.

3. Circle your five top priorities and they will become your goals.

For example: Want live tree. Need family to be together for dinner. Loved shopping with Aunt Ruth. Hated the last minute rush….

One Priority goal: Need family to be together for dinner.

Making a decision is the first step. What do YOU want? What would bring YOU joy?

EVALUATION:

Since there is no standardized tool to measure the
holidays–no HFA (Holiday Fun Assessment) or HQ (Happiness Quotient)–we will create an informal evaluation tool based on ecological assessments.

GOALS:

LONG TERM GOAL I: To have a traditional, homemade turkey dinner with family members on Christmas Day.

Do we want to raise the turkey and grow the corn for the stuffing? Serve the strawberry preserves from your summer garden? Do we want to skip the preparation and order in? Or go out to eat? So many choices?

If we decide to keep this as one of our goals, then we must break down our long-term goal into measurable, observable steps.

Mom decides she wants to cook the Christmas dinner and eat at home.

SHORT TERM OBJECTIVES:

“Short term objectives are merely small steps that enable us to get from where we are now to where we want to be by a certain date.”

A. Mom will finalize the menu by December 10.

B. Mom will make the list and complete the shopping by December 15.

C. Mom will prepare the dinner by December 25.

Each of these short-term objectives can be “task analyzed” and broken down into smaller parts.

We know these are important steps to reaching our goal so they must be completed with 100% accuracy. (75% completion of the meal may leave some family members hungry.)

Goal Two:

LONG TERM GOAL II: To have the gifts wrapped and under the tree by December 24.

SHORT TERM OBJECTIVES:

A. Mom will purchase all supplies by December 10.
B. Mom will supervise the gift-wrapping by December 15.

Task Analysis example:

Mom will supervise:

1. Billy will cut the paper.

2. Dad will wrap and tape the gifts.

3. Susie will add the bow.

4. Tommy will place the presents under the tree.

Notice in the Task Analysis, family members with different skill levels can all partially participate.

RELATED SERVICES:

—“Developmental, corrective and other supportive services to enable you to reach your goals.”

To achieve Goal IC –“Mom will prepare the food by December 25”—Mom will need the following supportive services:

Consultant: Grandma has the expertise to bake and bring perfect pumpkin pies.

Consultant: Aunt Jane will come early to help in the kitchen.

Community Resource: We will purchase the local bakery’s famous dinner rolls.

PLACEMENT:

Now that we have written our IEP we must determine the least restrictive environment for accomplishing our goals.

We could cook and wrap the presents at Aunt Sara’s and bring
everything home, but to meet Mom’s goals on this particular IEP, her own home is the least restrictive environment.

Remember any IEP can be revised or modified at any time. For instance, if Paula Deen wants to invite my family for a holiday dinner, I would change these goals in one butterfat minute.

Happy Holidays

I hope using the I.E.P. process not only makes it easier to understand, but I hope it can be a tool for you to have a magical holiday season.

Well, what do you think?

1. Do you better understand the IEP process?
2. Would this process be useful for everyone?
3. Does anyone raise turkeys?

Keep Climbing: Onward and Upward
All my best,

Mary

Other posts you might enjoy:

Celebrating St. Nick and two special sons.

Balancing My child’s needs and my needs

Thanksgiving | Inclusion and Interdependence

Squanto helps the Pilgrims

Thanksgiving Week: Day 1

I love the story of Thanksgiving. It is a story of inclusion (click here) and interdependence.

A group of pioneer families risk it all and travel to a strange land. They gratefully accept the help of the Native Americans who look different, speak a different language, have different cultural and religious beliefs. At first they are fearful of the differences, eventually they peacefully trade, share and learn from each other. The Native Americans welcome them into this new people and environment. But the Native Americans save the pilgrims from starvation (yea, corn, pumpkins, turkeys…) and disease (yea, the cranberry). Both groups still value their own cultural beliefs and traditions, but as neighbors they become an interdependent community which shares the hard work and sacrifice. Then, after a successful harvest, they do what every culture since the beginning of time does, they are thankful and celebrate.

As an early childhood teacher and special education professional I looked for ways to teach about cooperation, collaboration, and community. I looked for ways to include my students with special needs into the “normalized” (click here) holiday school programs and activities. I looked for ways to differentiate the curriculum so even the students with the most severe disabilities could partially participate.

Inclusion success stories for ALL children:

White Gifts for the Food Bank:

The entire school sponsored a “white gift” program for Thanksgiving. Each child brought in a non-perishable food item for the local food bank. The children decorated and wrapped the gifts in white tissue paper and put them into donated laundry baskets to distribute.

Thanksgiving Day Program:

I paraphrased and adapted the songs and dances so everyone could participate. We used the songs below in both large whole school programs and our individual class programs.

Bringing in the Community:

These were always crowd favorites. We would sing the songs, have someone dress up like a turkey and strut around. (One time it was the principal, one time a favorite music/gym teacher, sometimes a parent or a student from the high school drama club.) The turkey also lead the rhythm band for a couple songs. When we had a music teacher, she taught the rhythm band, after the cutbacks the teacher did it.

Each student made a picture for their families. If they were able, they wrote and read a sentence of what they were thankful for to the group. If the student couldn’t read, write or talk, they had a picture or the actual object they were thankful for (A picture of their family or a grandparent, a flower…) They might use a tape recorder, or ask their friends to say it with them.

For the grand finale, the class would line-dance to the traditional music of Turkey in the Straw and Old Joe Clark (the gym teacher helped teach the dances).

Finally, we ask the parents, brothers – sisters to join in for the Turkey in the Straw square and Old Joe Clark square dance classics.

The students created and colored/painted the programs, created unique tickets if we had limited seating, and they collected the tickets at the door. The words to all the songs were in the program so the children and parents could read and sing them together at home.

Refreshments:

The day before the program we had everyone bring in a piece of fruit for each person who was coming, the class made fruit salad, corn bread and cookies for the refreshments. Extra parents volunteered the day we made the fruit salad, corn bread and cookies. We had about 6 different kinds of fruit and vegetable peelers. We set up “stations” with a parent as supervisor of each station. Everyone participated, or partially participated according to their abilities.

Disabilities were not the issue, it was how can this person participate.

Decorations:

The students decorated the room and bulletin boards. We made several large murals of fruit cornacopeia, or a farm or grocery fruit and vegetable stand, or garden….

During our group story time, we used poster board to plan what we would do, and who would be responsible. We divided up the chores. The children chose how they wanted to do it. We usually combined the farm,Thanksgiving, food and/or autumn thematic units so the bulletin boards and room were decorated at least a week ahead of time. All learning activities focused on the thematic unit, were tied to standardized goals and IEP goals.

Children Giving the Tour:

Before the program, the students gave their parents and guests a tour of the classroom explaining what we were doing, what they were learning.

After the program, the parents got to take all their child’s work home to show grandma and grandpa or other friends on Thanksgiving day.

On Thanksgiving Day

Many families told us the whole family sang the songs and some used the “On Thanksgiving” song as part of the grace at Thanksgiving dinner. It really was a nice way of bringing the families into our program and letting the children be the experts and teach the songs, games to their families.

SONGS:

Ole Mr. Turkey

Who’s that struttin’ round lookin’ mighty perky?
Looks like it might be old Mister Turkey.
Strut Mr. Turkey that’s a fancy way to walk
Strut Mr. Turkey that’s a fancy way to walk.

Gobble, Gobble, Gobble

I’m a mighty fine turkey and I sing a fine song,
GOBBLE GOBBLE GOBBLE, GOBBLE, GOBBLE, GOBBLE
I strut around the barnyard all the day long and my head goes
BOBBLE BOBBLE BOBBLE.

TUNE: FRIERE JACQUES – Round

(In our school program, I took a song the children knew, rewrote the words, and chose one child to be the “conductor” for each part of the round. Another time in a whole school program, three different classes each sang a different part of the round.)

On Thanksgiving, on Thanksgiving
We are glad, we are glad.
For all the special blessings, all the special blessings
That we have, that we have.

(repeat 3 times)

TUNE: Turkey in the Straw

(I paraphrased the words so we could act it out.)

Oh, a turkey is a bird, just as proud as can be.
He struts around with his tail in the breeze.
He makes gobble noises at everyone he sees.
But thanksgiving is coming, and that’s not make-believe!

RUN TURKEY, HIDE TURKEY
Turkey in the straw, turkey in the hay,
Where oh where will the turkey be
When the table is set Thanksgiving Day? (rub tummy)

In Winter

(Transition verse- putting on coats, getting in line….)

In winter when it’s cold and snows
I have to wear a lot of clothes.
If only I were like a bear
I wouldn’t have all this to wear.
Whatever weather she is in,
She grows her coat right on her skin.

Comments:

What are some of your memories? How did the teacher include ALL students, including the students with disabilities in their activities? What were some of the lessons of that first Thanksgiving that apply to building community and celebrating diversity?

Keep Climbing: Onward and Upward

All my best,

Mary