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Aaron and Friends

Test Questions | Segregation or Inclusion?

Friends and family members send me newspaper stories about people with disabilities. Some stories make me shout with joy and others make me want to cry and give up. Often my friends can’t figure out which ones are which.

For those of you who have been following my blog, think of this as the end of semester test–one of those little Reader’s Digest sort of quizzes.

Below are three stories followed by three sets of multiple choice questions? What do you think of these stories? Please respond in the comments.

1. It’s always sunny in Life Town: (click here) The mocked-up village square allows children with disabilities to learn the skills they need in daily life. (Sunday, April 3, 2011 By Jason Shough THE COLUMBUS DISPATCH)

a. This story about inclusion makes me shout for joy.
b. This story about segregation makes me want to cry and give up.
c. I’m not sure.

2. A prom: An enchanted evening for students with intellectual disabilities (click here) A Pennsylvania high school held a prom Thursday night for students with intellectual disabilities. The event included many elements of the traditional high-school event, including dinner, dancing, pictures and entertainment. “Many of them will not attend another prom because of some of the limitations they have,” teacher Amanda Murray said. “But they deserve it. They never have an opportunity to be together without tons of rules outside a school situation.” Pittsburgh Tribune-Review.

a. This story about inclusion makes me shout for joy.
b. This story about segregation makes me want to cry and give up.
c. I’m not sure.

3. Story Three: see the picture, Aaron and Friends, at the top of the page.

Aaron, my son with the label of autism, is at a Spring Gala dinner and dance with his neighbors.

Susan and her husband, Charles, live next door to Aaron. They belong to a church at the edge of the neighborhood.

Susan invited Aaron and Jack (Aaron’s housemate) to join her and her husband for the church spring gala. They picked him up at the house and Susan introduced Aaron to the Minister and her friends, helped him get his dinner, danced with him, took pictures, and brought him home.

Aaron’s staff person was there to help if needed, but Susan and Charles did everything they could to make sure Aaron and Jack had a terrific night.

They told me later, they really enjoyed being with the guys and thought everyone had a great time. Susan was surprised Aaron enjoyed the band and watching all the people. She hopes to take them again next year.

a. This story of inclusion makes me shout for joy.
b. This story of segregation makes me want to cry and give up.
c. I’m not sure.

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Okay, now respond in the comments. No peeking at my response:) Remember your response is based on your paradigm and not mine, diversity is allowed. This isn’t a test where you have to please the teacher. This is a discussion of important issues.

Undecided?

Check out my previous article: Teachers| Segregation or Inclusion
Consider the core question: Does each of these activities lead toward the inclusion or segregation of people with disabilities?

For a definition of inclusion check out the article: What is Inclusion? plus, pictures of Aaron and Tommy at graduation.

Still Undecided?

Check out Norm Kunc: What’s your Credo of Support? Does this activity build authentic self-esteem and skills, or does it support the charity model?

Answer to Question 1: Mock Town by Barb McKenzie

Here is a response to the first article about the mock town from Barb McKenzie, a parent leader:

After seeing the title and reading the article below from today’s Columbus Dispatch newspaper I wondered, “Can benevolence get in the way of equality and ordinary opportunities?”

Do our good intentions sometimes get in the way?

Mary’s Answer: Question 1

I agree with Barb. “Life Town” can never be a mock town. This artifical town reminds me of “safety town” for preschoolers and kindergartners to learn how to drive their bikes. Or the little pretend kitchens in kindergarten rooms. Or, Lou Brown’s famous cardboard bus that some special education teachers made for their classes in the ’70s.

There are some people who think that because a person’s IQ score says they function at a 6 year old level, doing pretend kindergarten type experiences makes sense. What the research shows people with disabilities have trouble generalizing to other environments, and because this was a one-time experience (not really a teaching experience with multiple trials and practice), and because the mock town was just that–mock.

In my mind, this whole experience does not promote inclusion in the community, instead it promotes segregation because it assumes the students need a protective environment and a “get ready” for the real world attitude. The twenty volunteers and the time, money could have been much better spent to practice “community” skills in the real community–they are high school students, they don’t need to be in a pretend environment. I’m embarrassed these teachers didn’t know any better. They should know more about authentic learning and functional curriculum.

Here is a new resource from a member of TASH if anyone is looking for best practice for people with severe disabilities.

“Systematic Instruction of Functional Skills for Students and Adults with Disabilities by Dr. Keith Storey .” This is a practical “how to” text for teachers and other service providers. The format, readability, and detailed description of instructional methodology make it a resource for instructors responsible for improving the skills of learners with disabilities.

Answer to Test Question 2: Dr. Cheryl Jorgenson

Here is a response from Dr. Cheryl Jorgenson from the University of New Hampshire:

This kind of segregation of students with disabilities should be part of our long-past history, not featured in a national news brief for educators in special education. The statement quoted by the teacher (Ms. Murray) that the students have limitations that “prevent” them from attending the regular prom is beyond the pale. Can CEC seriously be promoting or even acknowledging this practice? IDEA states that students with disabilities have the right to participate in extracurricular activities alongside their peers without disabilities.

I believe that CEC owes an apology to all students with intellectual disabilities and should make a commitment to publishing stories that promote the full membership and participation of all students with disabilities in school and community life.

Mary’s Answer: Question 2, Special Prom

I agree with Cheryl. In fact, Aaron and his friend Jenni went to his High School prom twice (with another couple who supported them). He thought it was great, though he said the black patent leather shoes hurt, the music was too loud and the tux had funny buttons.

Mary’s Answer to Question 3: Aaron at Spring Fling.

Going to the Spring Fling with the neighbors is exactly the kind of experience that builds inclusion. Let’s look at the definition of normalization and inclusion:

Is it an age-appropriate activity? YES
Will this be an activity the person would enjoy? YES
Does it take place in the real community? YES
Is there “natural proportion”? Are no more than 10% of the participants people with disabilities? YES
Will it be status-enhancing? Good for the person’s self-esteem? YES
Does the person with disabilities have the support they need? YES
Does the person with disabilities have the opportunity to blend into the normal environment and be like everyone else? YES
Is this an opportunity to meet new neighbors and establish new relationships? YES
Is there the chance of this happening again? YES

Many people think that because I do not like the “charity model” I am not Christian, or against churches or religion. In my mind, Susan, Charles and the other members of this church were practicing the Christian spirit and the best of religion.

I hope this make sense. There are many people who just cannot understand the differences between inclusion and segregation. To Aaron and our family, the differences make all the difference.

Keep Climbing: Onward and Upward:
“When we stop to lift one another up on the climb, we all reach a higher place.” Mimi Meredith

Mary

Comments: What do you think?

Do these kinds of stories inspire you or drive you to distraction? What would you say to good, caring people who want to create segregated events? Would you participate? Is this better than just sitting in the classroom? What does inclusive or segregated events teach the community about people with disabilities?

photo credit: HA! Designs – Artbyheather

How do you measure what is important?

Hain Ginott, the famous child psychologist and author of classic books like “Between Parents and Child” and “Between Teachers and Child” taught about the power of establishing your own rules. He reasoned the rules helped you communicate your core values and helped you measure your actions.

One of the first articles on this blog was Shouting My Commitment. Where I tell the world exactly where I stand.

Over the years, my rule has been reduced to one sentence:

“Does this action lead toward inclusion, or toward segregation?”

End of Semester, but Beginning of Life.

Here at Climbing Every Mountain, many of our readers are students in Diversity and Disability Study classes at area universities.

As the semester is ending, I hope your time here has been informative, entertaining and caused you some “cognitive dissonance.”

Cognitive Dissonance

Piaget and other educational theorists say we must have “cognitive dissonance” to challenge our existing paradigm and beliefs–or there can be no change–no evolution in our thinking, no learning.

I received emails when several people disagreed with my last post, “I love Aaron| I hate Autism.” I spoke my truth, it meets my rule–so I am confident in my position. I welcome their “cognitive dissonance” and hope they will continue the discussion–so all of us will learn new things.

Evolving from Student to Teacher

One of the responsibilities of being a teacher is to raise issues, even if they are not popular. Sure, you need to be thoughtful and research your topics. Sure, you need to present logical arguments and use real world examples. Sure, you need to be aware of learning styles and cultural diversity.

At the end of the semester, a student must synthesize all the new information and create your own rules to live by. What will you “prune” away, and what ideas, facts, theories will now become part of the way you think and act?

If your measuring stick is different than others, this is tricky. Many people will disagree and see things based on their own measuring stick. That’s okay. That’s their right.

WARNING: The more important the topic–the more diversity of opinion.

And, even though it is hard to admit, they might be right. Their opinions might cause you cognitive dissonance and the spiral of learning begins all over again.

Evolving from Student to Teacher to Student

As teachers, you are going to be the advocate for not only yourself, but also the children in your care, their parents, the other teachers, the administration, the community, everyone.

You will have to keep learning, not just for survival, but because you want to keep growing and changing. You will have to find the empathy to see things from other’s point of view.

You will have to learn to take baby steps and compromise–often.

Nothing is Perfect. Nothing is totally Pure.

If you are a leader, you will face difficult decisions. You will need to be able to know what you stand for. When to walk away. When to compromise. When to ignore. When to dig in and fight.

Inch by Inch, anything’s a cinch (Schuller)

“Does this lead toward inclusion, or toward segregation?”

This mantra works for me but you will need to find your own. What defines you, your heart, your truth? What is your call to action?

Bronfenbrenner, another educational psychologist, showed us how to think in systems. I’ve written about how this applies to Aaron, my son with the label of autism in a post called The Circles of Life, but want to share some ideas from system’s theory and my point about moving from segregation to inclusion.

Individual Change

If an individual student with a disability can join general education students at a lunchroom table–this is one inch toward inclusion and away from segregation. It is a move in the direction of inclusion.

Classroom Change

If a colleague differentiates an assignment for a class, so that ALL can participate–we celebrate this step toward inclusion.

School Change

If a policy is changed, and students with disabilities can go on the fieldtrip with their general education class–this is a small step toward inclusion.

Cultural Change

In my opinion, recent political events demonstrate certain politicians are trying to demonize public employees–especially teachers–so they can further their agenda to only teach certain conservative curriculums, dismantle collective bargaining and a teacher’s influence in his/her own class, sabatoge the public schools, and create more private/charter schools at public expense. They no longer want to separate church and state.

Using my measure of, “Does this action move toward inclusion, or toward segregation” it is clear it moves toward segregation.

As teachers in the 21st century, you are going to be caught in the cross-fire. You will need to make choices and decisions.

The administration in private/charter schools can make a rule that says, “We don’t take kids with disabilities.”

Since private/charter schools do not have to follow many of the federal laws this is their right.

Personal Change

You are not going to be able to just ride this one out. YOU are going to have to make choices and decisions.

What rule do you want in your community, your life?

Is this the kind of community and/or school where you want to teach?
Where you will send your children?

Do you want to be forbidden subjects about diversity, science, history and even basic tenants of democracy and freedom?

Obviously this is a major discussion. What role do you want to play in the discussion?

Conclusion

I want to invite everyone to continue as members of our Climbing Every Mountain community, and encourage you to make rules that will guide your life.

I wish you well. I wish you courage.

Below is part of a speech Haim Ginott gave to a group of teachers on the first day of school. I find it inspiring, I hope you do too.

Dear Teacher,

I am a survivor of a concentration camp. My eyes saw what no man should witness.

Gas chambers built by learned engineers.
Children poisoned by educated physicians.
Infants killed by trained nurses.
Women and babies shot and burned by high school and college graduates.

So, I am suspicious of education.
My request is that teachers help students become human.
Your efforts must never produce learned monsters, skilled psychopaths, educated Eichmanns.

Reading, writing, arithmetic are important only if they serve to make our children more human…
(Haim Ginott, 1972, Teacher and Child)

Keep Climbing: Onward and Upward

Mary

Share your Thoughts

Do you have a bottom line? Can you sum up the rules of your life in one or two sentences? Do you believe in inclusion, do you believe in segregation? It is that simple. Whatever your choice—your actions are more important than your thoughts or words. What did you think of Haim Ginott’s message to “be human”?

Norm Kunc

Norm Kunc changes lives.

I would spend the whole year teaching university students and teachers about the need for inclusion, normalization, self-advocacy, people first… and they would nod their heads (or scratch their heads at the crazy lady), pass their tests, and go on with the way they always did things.

Norm Kunc came to campus, spoke to these same students and in fifteen minutes–he rocked their world.

That quick–his message is that powerful.

Here is Norm and Emma Kunc’s website. I’ll write more about them in another post, but if you get a chance book them or attend one of their presentations. It will change your life.

Here is Norm’s Credo of Support. It is not the same as hearing him in person, but the video message shows the power of words and the talents of self-advocates. When Norm introduces the video he says the words just poured out of his heart.

Here’s hoping it touches your heart too.

Keep Climbing: Onward and Upward

Mary

Talk about it!

What did you think of the Credo of Support? Do you think the message is stronger coming from self-advocates? What is your personal credo? Can you think of ways people with disabilities can give their own message?

Would you like to hear more about Norm and his wife Emma’s work?

Bob Perske by Joe Arridy's Grave

On January 7, 2011, Colorado Governor Bill Ritter, Jr. issued a “posthumous pardon” to Arridy, one of the five wrongly executed people with intellectual disabilities.

BOB PERSKE:

Pastor to People with Disabilities and their Families

Bob Perske is one of the most gentle and positive people I know. He lives God’s message to care for the “least of my brethern.”

It might surprise people to know Bob hangs out with criminals on death row.

In a previous post I shared his “history of people with disabilities and hope for families.”

Because Bob understands the history of people with disabilties, he knows FEAR was one of the main reasons for removing people from their families and locking them up in institutions, away from society. Fear is still one of the main reason people are excluded from quality lives in the community.

The world in which we live is not always safe, secure, and predictable. It does not always say “please” or “excuse me.” Everyday there is a possibility of being thrown up against a situation where we may have to risk everything, even our lives. This is the real world. We must work to develop every human resource within us in order to prepare for these days (Robert Perske: “The Dignity of Risk.” 1972).

Bob is still hopeful for families, but he wanted to share his recent testimony about people with intellectual disabilities who have been convicted of serious crimes they didn’t commit. Crimes they confessed to because they wanted to make the police officers happy or get them to stop the interrogations. Crimes they didn’t even understand.

Everyone wants people who kill, steal and rape people behind bars. Everyone wants dangerous people off the streets. Everyone wants JUSTICE for the victims. And, Everyone wants the right person convicted.

But Bob Perske and others ask:

“What if the person who confesses to the crime is a person with an intellectual disability?”

Certainly, just because a person has the label of intellectual disability doesn’t make them innocent–but it also shouldn’t make them vulnerable to giving false testimony in our criminal justice system.

Bob writes:

Although I did a lot of writing about kids and families earlier, deep in my heart I think they also need to be aware of futures where they can be misunderstood by interrogators and they need to be alert and ready for these grim possibilities.

What can we do?

ELECTRONIC RECORDING OF CUSTODIAL INTERROGATIONS
Robert Perske, Citizen Advocate
Persons With Intellectual Disabilities

Rperske@aol.com; www.robertperske.com
www.friendsofrichardlapointe.com
www.friendsofjoearridy.com

CT: REGARDING SB NO. 954 AN ACT CONCERNING THE ELECTRONIC RECORDING OF CUSTODIAL INTERROGATIONS (March 9, 2011)

Dear Committee Members:

For the past 34 years, I have served as a worker and author on cases involving persons with intellectual disabilities who were coerced into confessing to major felonies they did not commit.

I am a member of The ARC of Connecticut and The ARC of the United States.

I am the author of “Perske’s List: False Confessions from 75 Persons with Intellectual Disabilities.”

It will be published in September’s Intellectual and Developmental Disabilities, a journal of the American Association on Intellectual Disabilities. (AIIDD).

The article is 24 pages long. It shows that:

• 65 have been legally exonerated.
• 29 have been exonerated by DNA tests.
• 5 are now headed for court hearings thanks to “Innocent Project” groups.
• 5 have been so wrongly executed they will always be painful to justice-loving lawyers when they think about them.
• 1 of the five wrongly executed was Joe Arridy. On January 7, 2011, Colorado Governor Bill Ritter, Jr. issued a “posthumous pardon” to Arridy.
• I predict that Richard Lapointe of Connecticut will someday be added to this list.

The time has come when judges and juries should be helped by advanced video technology to see everything that went on in an interrogation room. Until they can do that, our justice system will be tainted.

Respectfully Submitted

Robert Perske

RESOURCES:

Check out Bob’s articles, books, websites or give him a call.

Closing Thoughts:

As parents we worry about our children being victims. Few of us imagine our children as the aggressor.

What can be done to give them better protection, a more fair and equal justice? Because sometimes even the people who have confessed to being the aggressors–are Victims.

Electronic equipment seems like an easy answer to me. I would think it would help protect the rights of everyone, including the police officers.

Keep Climbing: Onward and Upward
All my best,
Mary

Discussion: These are life and death issues. Would video technology and electronic recordings of custodial hearings bring better justice to everyone? Is this worth the cost? What do you think of Bob’s role as a pastor and “citizen advocate”? How can we make our children less vulnerable?

photo credit: Okinawa Soba

BULLETIN BOARD

 The Climb: New Theme Song for our blog

Attention all music lovers:  Pastor Snoopi Botten and Blake Roberts have added their magic digitalized effects to The Climb, (click on link).

Blake suggested this song become the Theme Song for the Climbing Every Mountain blog.

It’s PERFECT and their effects are pure magic.

You might remember both Snoopi and Blake shared their version of the  classic  Do You Hear What I Hear (click on the link) on Christmas Day. 

Check out their earlier post for their amazing personal stories and the details of their method for helping us all hear and see things in different ways.

Thanks to both Snoopi and Blake for being part of this community.

————————————————————————————

Pete Wright, Esq. of wrightslaw.com

Two Workshops in Cincinnati, OH to discuss the educational implications of chronic illnesses/disabilities. These workshops should be great for anyone interested in recent changes in IDEA, 504 et al… and children with chronic health needs.

 APHOES National Conference:  May 5-6 

Special Education Law and Advocacy Program:  May 7

For conference agenda and registration click on links.

If you have any questions, please contact the School Intervention Program at 513-803-0513 or by email (SIP@cchmc.org).

photo credit: Swamibu

2006

Aaron, my son with the labels of autism and developmental disabilities, had a doctor’s appointment so I brought him late to his adult day program.

A Visit to the Jungle—Jungle Jim’s that is.

Thanks to cell phones, I connected with his group on their community outing at Jungle Jim’s. This is a mega grocery store with a jungle theme: animated monkeys, giraffes, and other animals spread throughout the store. It’s a pretty neat place and features foods from around the world.

Like most people, Aaron and I got a grocery cart when we entered the store.

Adults with Disabilities in Large Group

We found the group–immediately.

Coming down the meat aisle, two women in their 30s were holding hands walking in front of three people in wheelchairs. Both woman had Down syndrome were about 5’6” and weighed about 200 pounds. Another man (about 50) was holding hands with a female staff person. The second staff person was pushing one of the people in wheelchairs. They did not have any shopping cart.

Gosh, I wonder how we found them so easily?

When one of the staff people saw Aaron pushing a grocery cart, she said she was surprised he had those skills and could tolerate the noise and confusion of a grocery. I assured her Aaron was fine and in fact, since he was in second grade, grocery shopping was part of his functional curriculum (click here).

Plus, when he lived at home, he went with me to the store 4-5 times a week. I expected Aaron to do well in the grocery and even expected him to participate in the shopping and make choices for the items he liked. Aaron actually met some of his former classmates at our community store (click here).

The staff person didn’t really pay attention to what I was saying. Since she was the professional in charge, and I am clearly just the mother, she politely said I could leave and she would watch Aaron (along with the other six people).

To her surprise, I smiled at her and said there was NO WAY I was going to leave. (What I actually said was a lot nicer–what I was thinking was actually not a lot nicer.)

Preschoolers

A group of preschoolers were also visiting Jungle Jim’s that day. The teacher had prearranged an instructional tour. A store employee, dressed like a jungle safari guide, was explaining how cheese comes in huge round blocks from many different countries. Even with the guide in her camouflage pants and a netted hard hat, and the teacher saying “Who can tell me what shape that is?” all the kids were gawking at our group.

Our two aides, of course, just kept herding the group of adults with disabilities down the aisle. They talked to each other about the general prejudice of our society toward people who are different, and young children who just didn’t know any better. After all, they are Christian women who care about the “least of God’s children” and they are the enlightened ones earning their crown in Heaven.

Purpose of the Grocery Trip

Unlike the preschoolers who were making the trip to the grocery an educational experience, I asked one of the aides what our group was buying at the grocery. She shrugged her shoulders and said, “Oh, it is the end of the month, we are out of funds–so we are just looking around, enjoying the air conditioning.”

Shock in Aisle 4

I was with Aaron and our group for about 15 minutes and I was on the edge of hysteria. I literally had to do calming breaths. I felt like I was in a time warp from the ‘80s. I kept thinking of the years Aaron’s occupational therapist, speech/language pathologist, physical therapist, teachers and instructional assistants taught Aaron to plan his purchases, buy items, make choices, use his picture communication book, use his wallet, push the cart without hitting anyone, maneuver around kiosks and displays set up in the middle of an aisle…. Aaron even worked at a grocery store, with his job coach, stocking shelves as part of his work transition plan.

Normalization

I also thought about everything I knew about normalization–to go to the store in small groups (no more than two) and blend into the population. To have the skills and behaviors of a consumer so you were a valued customer and respected member of the community.

I remembered Alison Ford’s presentation about, “There is so much more at the grocery store” and the Syracuse Functional Curriculum. And Marc Gold, Lou Brown and Sharon Freagon’s slides using the grocery store for a teaching environment because it was a community environment that would be used for a lifetime–multiple trials over multiple years.

Inclusion and the Jungle

One of the lessons of nature is that for animals to survive, they need to blend in, or be camouflaged into the environment. That is why polar bears are white, and alligators look like logs floating in the river. It is why the female cardinal, who carries the young, is a dull brown and her male partner is bright red to attract the attention of predators.

The history of man also tells us about the power of in and out groups. We segregate criminals in orange jumpsuits so they stand out and everyone knows there is danger. The Nazi’s forced the Jews to wear Stars of David arm bands to clearly stigmatize and identify their enemies. Police uniforms identify people who we can ask for help.

The history of people with disabilities also includes the stigma and isolation of people as being so different, so dangerous that parents would point to strangers and urge their children away.

I talk about some of these stigmas in my story about America the Beautiful (click here).

Because Aaron does not communicate like other people. Because Aaron has some bizarre behaviors. Because it takes people a while to get to know him. Because of his labels… we make sure Aaron is well groomed, wears stylish clothes and can survive by blending into existing groups.

We practice the principles of normalization and inclusion everywhere we go. We work hard to help Aaron be seen as a contributing member of the community, a valued member of a family, a friend, a loving uncle.

Like the jungle, “the survival of the fittest” belongs to those who can camouflage themselves into the natural world, or in disability-speak, be included in the community.

Tiger Mom

Obviously, none of these aides had read about this, or anything else. In fact, these loving caring aides who work for minimum wage do the job as a labor of love. They are not trying to stigmatize Aaron and his group–they just don’t know any better. They are not trying to alienate and waste the people’s time and let their skills deteriorate—they really, really, really just haven’t been trained.

So, of course, Tiger Mom took over.

That day I decided to stay and try to teach some skills. I have trained parents and teachers, I have a lifetime with Aaron so Tiger Mom went into action.

I figured the normalization lesson would have to wait because there was no way our group was ever going to blend in. (How could two aides handle seven people with significant disabilities, three who used wheelchairs?) We also did not have enough staff to divide up in small groups and spread out in the store.

Let’s Buy Something?

So I suggested, “Let’s buy something, and I will treat. What could we make for a snack? Or what do you need?” (MAKING CHOICES—giving dignity to the people.)

One person suggested we make smoothies. Great, smoothies! (That is AGE-APPROPRIATE. People of all ages like smoothies. It was hot outside so it was appropriate for the time of year.) Smoothies it is!

Task Analysis

I ask the group what ingredients we needed to make the smoothies. Each of the seven people had a particular item to find on the shelf and put in the cart Aaron was pushing (FUNCTIONAL SKILL: IF THEY DIDN’T GET THE ITEM, SOMEONE ELSE WOULD HAVE HAD TO GET IT.)

Aaron pushing the cart was a balancing and behavioral technique to keep Aaron on task and keep him from running off down the aisle. It also put Aaron in a valued position because he was needed for each item. It also required each of the people to (SOCIALLY INTERACT) with Aaron.

Teaching “Learned Helplessness”

The people with disabilities all got into it. But the kind, but totally clueless aide was doing everything for them–even putting the item in the cart for them. And, obnoxious me, I would return the item to the person, put it in their hands and ask them to put the item in the cart. (LEARNED HELPLESSNESS.) Geesh!

Since Aaron was pushing the cart, he was like the leader of the safari. He did great, but I swear, the others had either lost their skills or hadn’t had much opportunity to learn about PARTIAL PARTICIPATION and practice being an active participant in the shopping environment.

We had a hard time finding the frozen juices, but guess what? Near the ceiling, there was a big sign that said “JUICE” – which I of course, pointed out so the group could READING CONTEXT CLUES it.

The aides–actually, I don’t know what the aides were thinking—they looked at me like I was nuts to point out a sign to these people who they knew couldn’t read.

CONCLUSION

The safari ends with checkout and the group being loaded into the vans.

I let Aaron leave with the group. I said goodbye and I hoped they enjoyed their smoothies, and then… I sat in my car and cried for 20 minutes and was depressed for the next week.

All of our fight for inclusion in a regular school, fight for a functional community-based curriculum, all the research and knowledge we have acquired for the last 30 years in special education–and here is Aaron in the middle of what felt like a freak show.

Even if I tried to feel some redemption about the functional shopping experience with the outcome of them making a smoothie, and even if I tried to ignore my overstepping boundaries and staying, “Just a mother.” The low expectations (click here) and lack of skills felt hopeless. All the skills that Aaron had, and now was losing.

I haven’t resolved this. The aides were good people doing a tough job. Imagine lugging 7 adults in and out of vans, and not having the funds to buy anything on a trip to the grocery?…. but my heart just breaks for Aaron. His dream plan, years and years of work–and it is like it never happened.

Children have value and hope. The adult world has no mandates, no IEPs or due process. Where are the people who certify these programs? How can these good aides have so little support and resources?

Thanks for listening, I know you don’t have the answers either. I stopped in Aaron’s day program again yesterday and the group was making lady bugs on green construction paper leaves from a pre-school activity book. Geesh!

Deep breathe, in-out-in-out.

Lady bugs are supposed to be good luck, right?

I feel like I should end with a joke or something to lighten this up, but I feel betrayed by the paid “Professionals” in our county who know better. Where are they?

Am I really supposed to just “feel grateful” that Ohio has any programs at all, and Aaron’s developmental twin in Tennessee and South Carolina are just sitting at home doing nothing?

Of course, last year was worse and at least now, Aaron is out of the crowded back room with no windows at the sheltered workshop.

He is surrounded by kind people who care about him. It could be worse. But wow, it certainly could be better.

Keep Climbing: Onward and Upward

Mary

Please chime in:

What would you have done? Would you just watch? Would you just leave Aaron and go? Would you go back to the grocery for a bottle of scotch? Any suggestions? In this jungle, what would a “normal” shopping trip look like for the people with severe disabilities? What message do you think the preschoolers got? What would be better?

If you liked this article, please share it on Facebook, Twitter and other social media. Thanks.

photo credit: █ Slices of Light █▀ ▀

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Who sould be at an IEP?

What is an IEP?

Special Education Acronymn Song

Keep Climbing: Onward and Upward

Mary

Over to You: What do you think?

Do you have other YouTube videos to recommend? Other social media sites?

Does anyone know of any sites or videos about adults? Parenting adults with disabilities?

When Aaron was in high school he needed to get his wisdom teeth pulled. Sounds normal, right? You, me and most people get our wisdom teeth pulled.

The difference between you, me, most people and Aaron is Aaron has autism. That makes a huge difference in the choice of dentists, hygienists, insurance…pain, suffering and good oral hygiene.

Over the years, Aaron has had some great dentists and some not-so-great. Some great hygienists and…hygienists who refused to put their fingers in his mouth. One dentist wouldn’t let Aaron in his waiting room. I’ve written about the “retarded teeth” episode.

Like most people I asked my friends for recommendations and was directed to Dr. G. for the wisdom teeth. We stuck.

Fifteen years later Aaron is still going to Dr. G., even though he is a pediatric dentist. The advantage of a pediatric dentist is he does not rely on the patient for any information and works quickly. Dentists and Doctors who work with adults usually ask their patients if they are having any trouble and expect them to participate in examinations. Young children and people with disabilities who don’t use words are a lot alike.

Normalization–Yes; Age-appropriate–No.

Dr. G has a “normal” practice. He works with lots of children and a handful of people with disabilities. While this meets the definition of “normalization” or “social role valorization,” this would not meet the definition of age-appropriate–Aaron is 36 years old.

How the Doctor Visit Works

Last week Aaron had his bi-yearly visit for a check-up and cleaning. Tom, my husband, takes Aaron (I’m too squeamish).

We have learned the best time for an appointment is the last appointment before lunch. This way, there are only a handful of other patients, the waiting room is less chaotic, and if Aaron runs over, there is some flexibility. We also schedule a day when Kathy, the dental hygienist, is working.

Full Circle

Kathy has worked with Aaron for many years but this year, a new hygienist was assisting her. Turns out this new hygienist was one of Dr. G and Kathy’s former patients. She grew up watching Dr. G and Kathy, became a dental assistant and now is working in their office. Full Circle.

Inclusive Dental Care | Autistic Dental Care–NOT!

Kathy used the same techniques she uses with all her patients. The trick is she individualizes the care based on the individual needs of the patient.

Individualized Dental Plan

As Kathy worked she explained what she was doing to Aaron, Tom, and the new assistant—between verses of camp songs! So, “I’m using these cotton squares to absorb the fluid so Aaron doesn’t swallow and gag…Eeeeye, eeeeye, Ohhh. And on his farm he had a cow…”

Kathy and everyone in the office, including the other hygienists, the patients and their parents all sing during the dental cleanings. She’ll be comin’ round the mountain, Wheels on the bus, If you’re happy and you know it…

Aaron loves it. This helps him relax, plus it builds a community among all the people in the room.

This isn’t the dreaded trip to the dentist I had when I was a kid, this is just a trip to the dentist with some fun people. And, the most interesting thing is ALL the other kids and parents love it too. Aaron often makes strange noises, somehow having a familiar song and such an accepting environment makes everything okay.

The amazing results are Kathy gets Aaron’s teeth cleaned thoroughly, she even flosses his teeth.

This is ASTOUNDING!

If you polled a group of 50 school psychologists 100% of them would say flossing Aaron’s teeth was impossible. You see this would NOT fit in any scientific venue. There would not be a big enough sample of patients, there would not be replication or any guarantee this would work in other dental offices. There would not be a lot of people just like Aaron, or like Kathy or Dr. G.. So, scientific methods are not applicable, this is not predictable. It just works.

Other tricks we learned from Dr. G, Kathy and the other people in the dentist’s office:

1. Use a sealer on the teeth. Aaron got his first sealant applied when they first came out over 15 years ago. The sealant has held up. Aaron has had no cavities in all that time.

2. Aaron goes into the hospital and Dr. G does a deep cleaning when needed. In 15 years, Aaron has had this procedure two times. It requires him to be put under, so it is serious.

3. Dr. G especially looks for gum disease at each visit.

4. He does not recommend an electric toothbrush for Aaron.

5. He does give a report card to Aaron on his dental hygiene.

6. We take this report card to Aaron’s ISP meeting and incorporate the teeth brushing into Aaron’s goals. Now, we know Aaron doesn’t brush his teeth—so this is mainly for the staff. But by incorporating it into the record keeping, there is some accountability for staff.

7. I’m sure Kathy and the others have all kinds of technical hints i.e. Because of Aaron’s balance issues, they adjust the chair for Aaron’s comfort—rather than theirs….

Dr. G.

As far as we know, Dr. G does not get paid for working with Aaron. We give the office staff Aaron’s medical card, but Dr. G has shared it is not worth his time to file the paperwork.

Kathy and the other hygienists always tell us it is their pleasure to work with Aaron. And they make us believe it. They make us feel Aaron is an important member of their caring community.

They make us feel welcome. We feel no one could pay them for the love and extra attention they give to Aaron. It is a special gift indeed.

I think they use Aaron to train their staff. Who knows whether that new hygienist may one day be doing Aaron or someone else’s teeth? I like to think Aaron is teaching them? Maybe they think, my god, if we can floss Aaron’s teeth—we can do anyone! Or, maybe it is a point of pride that they are damn good hygienists!

I think it is because they are just good people who care about other people. They are good hygienists with everyone–not just Aaron.

In return, as Aaron’s parents we cherish them and their gift.

State Cutbacks

When the state was going to reduce the dental visits from 2 times a year to once a year for people on medical cards, I wrote a letter to the state and called Ohio Legal Rights. The state cut back, reinstated, and then I think the current status is cut back again to one time a year.

Since Dr. G is so generous, we have had the luxury of taking Aaron twice a year. And we know we are blessed. Aaron has a great smile, his teeth and gums are healthy. We are lucky.

Tom and I also hassle the residential staff about brushing Aaron’s teeth. I’ve written before about how the caregivers don’t think this is necessary. So we make sure the staff knows this is a big deal and we will follow-through if Aaron’s teeth are not clean.

Every office visit, we also always bring all the dental staff flowers or a plant, we send thank you cards and tell them how wonderful they are. Kathy always gives Aaron a hug. And it always chokes us up.

Bill F.

Wolf Wolfensberger wrote an article about Bill F. I will never forget. Wolfensberger is a professor at Syracuse University who is famous for his theory of Normalization, Social Role Valorization and Citizen Advocacy.

In his article, Bill F. is a man with an intellectual disability who actually died because he was not given dentures that fit. This started a cycle of him not being about to eat well, manage his diabetes, which led to him becoming frail, which led to him falling, which meant he was put into a nursing home and lost his apartment and independence…. And died—all because he didn’t get the dental care he needed.

The other part of the Bill F story is about the role of advocates, friends, citizens who just cared about Bill and tried to get him help. These citizen advocates (here is an article from the MN Governor’s DD Planning Council site) gave Bill the dignity of being a friend and person. Not a client, not a patient, not a person with mental retardation who they were going to save or offer their charity. These citizen advocates cared about Bill the person.

I like to think Dr. G, Kathy and the other staff are not just doing their jobs when they treat Aaron. They have proven, time and again, they care about Aaron. He is more than just the patient in the 11:00 slot.

I think Aaron gives them something rare, something that makes them feel proud and humbled that they can be with him.

So, AHHHHHH indeed. Dr. G, Kathy and all people who work to give good dental care and sooo much more–Thanks We Love You. You make our mouths and hearts smile!

Keep Climbing: Onward and Upward

Mary

Comments:

If you liked this post, please add your thoughts, share it on Twitter, Facebook… and other social media.
What do you think about the government cutting back dental services for people with disabilities? Does it make a difference if they only get their teeth cleaned once a year? Would they have extra reasons for needing check-ups twice a year? Is this discrimination? Are dental services for people with disabilities a waste of taxpayer dollars?

PS. You are allowed to disagree with me, a different viewpoint, helps us learn and find solutions.

Wolfensberger, W. (1989, December). Bill F.: Signs of the times read from the life of one mentally retarded man. Mental Retardation, 27(6), 369-373.

Ed Roberts Campus in Berkeley, CA

Thanks to everyone who Tweeted, Facebooked (is that a word?) and otherwise shared information about Ed Roberts and his first official memorial day in California

The Ed Roberts Campus at Berekley California is now officially open. The campus uses Universal Design and is built for EVERYONE. Here is an article about how the archetic had to think differently about successful design. It is across the street from a fully accessible transportation system. Win-Win.

We had a great response to reformating the historical videos into segments for YouTube. We are creating a plan for moving forword. As we get news, I’ll pass it on. Thanks to everyone who so generously contributed in any way to this important project.

The Inclusion and Disability Rights Movement has come a long way, yet we have so much farther to go.

Adapting: Becoming a Star

Ed Roberts often joked that in the first 14 years of his life he was “just an ordinary kid.” He was more interested in sports than in school work and wanted to be a professional baseball player when he grew up. That all changed.

In 1953, before the vaccine, Ed contracted polio. Overnight he became paralyzed from the neck down and required an iron lung, which he used the rest of his life.

One of Ed’s greatest talents was being able to look at a situation, and ADAPT.

Ed decided a baseball career was out, and became a straight A student in High School.

When all the students stared at him, he decided this was an attitude problem. Instead of being embarrassed, this was how it must feel to be famous. In time, he reframed the whole experience, adapted, and decided he would pretend to become a famous movie star.

Indeed he did become a star. How fitting we are now trying to get his video on YouTube. I think he would get a bang out of that.

Stares into Stars

This would also be a good tip for people who are being stared out. Parents, Caregivers, Teachers could all adapt this strategy and help “reframe” those stares into stars!

Skype and Technology

I just saw a video (2010) where a teacher and class used Skype to help one of the students who had cancer keep up with what was happening at school.

When Ed Roberts got Polio, (1952) he was quarantined and had to listen to his classes over the telephone. Think of the differences.

Skype would have been amazing to him.

When Ed returned to school after missing almost two years of school, he felt like a stranger. Not only had he changed physically, he was now paralyzed, but he carried the stigma of “polio” and having a “Quarantined” sign on his front door.

At 16, Ed had to start his life and start making friends all over again. Plus, with the stigma of “polio” people were afraid of him and he looked so “different.” If the students could have seen him over “Skype” they would have seen him evolve, and gradually they would have adjusted to his new learning style and physical appearance. It would have been a learning experience for all of them.

It’s nice when students send get well cards, but including the student on Skype shows another dimension of caring.
BTW: home with Skype is the least restictive environment for this child at this time.

The new Technology Act will make other learning opportunities available for people of all ages. Who knows what the future may hold.

Your Turn

Any other tips for reframing embarrassing situations Stares into Stars? Any other uses of technology you would recommend? What would you want if you had to miss school for a long time?

Keep Climbing: Onward and Upward.
All the best,

Mary

Ed Roberts

VIDEO Strategies for Social Change: Ed Roberts speaks at first meeting of Partners in Policymaking .

This is all Ed Roberts’ fault!

Ed Roberts was a civil rights leader for people with disabilities who was called a “prophet for independence.” He challenged each of us to be extraordinary.

This could be Chris Brogan’s fault!

Chris Brogan is a socially conscious social media guru with thousands of readers. He recently challenged his readers to use the oldest form of exchange–barter. Bartering in a Digital Age is about finding a way to get the services or goods you need. No excuses. If you can’t afford or don’t know how to do something, barter.

It’s the MN DD Planning Council’s fault!

The Minnesota Governor’s Developmental Disabilities Planning Council has been documenting the paradigm pioneers in the History of People with Disabilities for over a decade. Parallels in Time I and Parallels in Time II.

Since most history books ignore people with disabilities, these are important historical videos.

Okay, it’s my own fault!

I contacted the MN DD Planning Council and asked if any of their videos were in shorter segments. Dr. Colleen Wieck, the director said she “wished,” but there were no resources to edit or transfer the videos to YouTube.

I knew blog readers want short video segments, so there was the problem.

So now, Ed Roberts meet Chris Brogan meet MN DD Planning Council meet… er, me…meet YOU.

WE NEED YOU

Do you have the technological skills to edit videos like the Ed Roberts video (above) into three or four, 1-5 minute segments?

Could you help us post them on YouTube and the Parallels in Time website?

If you could help us with just one video, that would be significant.

In exchange, you choose a job for me, from the list below.

Let’s Make a Deal

EXCHANGE—an hour for an hour, my services for up to 50 hours.

NO MONEY will be exchanged.

How Can I Help?

I’ve have experience working with individuals and families. I could consult with you by phone (in US) or email. (Check out my “About” page.)

I’m a decent Beta Reader and developmental editor. If you have a novel or ebook sitting in your closet, I can help.

I could ghost write a blog post, review a book or education/teaching product.

I could research a topic (of your choice).

Any other idea we mutually agree on.

Disclaimer: I’ll give you my best, but no guarantees. I can’t cure anyone.

FOR THE SKEPTICS

This is a labor of love. I’m volunteering, no financial gain. Many of the people in the videos were friends or colleagues, many are now gone, but their vision lives.

This is important work. It’s been a long road for people with disabilities and their families, we need to keep moving forward.

Even if you don’t have a family member with a disability, there are good reasons to get involved.

We have knowledge and experience in quality of life issues and long-term care that will help Baby Boomers, seniors and others who are in the “temporarily able bodied” or “yet to be disabled” group Ed Roberts spoke about:

“We’re all getting older. We can’t avoid it, can we? I look around, and I notice that a lot of us are getting gray. As we get older, we realize that disability is just a part of life. Anyone can join our group at any point in life. In this way, the Disability Rights Movement doesn’t discriminate. As those of us who are temporarily able-bodied and working for access and accommodations now get older, the changes we make now will benefit us as well.”

CONTACT INFORMATION

If you are interested: FIRST COME FIRST SERVED. You get to pick the video you will work on.

1. Go to: Parallels in Time II videos or the Ed Roberts Memorial site.

2. Choose a video you would like to edit into three or four, 1-5 minute segments. (I can help you pick out the segments, or you can choose what you think is the most powerful.)

3. Email me at MaryE.Ulrich1@gmail.com and we’ll mutually decide the barter exchange.

4. We both get to work. Deadline March 1st.

Watch Our Progress

Every Friday, I’ll post how things are going. If this is not a good time for you, but you know of someone who might be able to help with this project, please forward this information.

All prayers and best wishes welcome.

Keep Climbing: Onward and Upward

Mary

Comments:

If you have questions you think would be helpful to the group, please ask here. Otherwise, contact me privately.

What do you think? Will the barter system work? Will these edited videos help spread our message of independence, interdependence and inclusion?

Can you help us, and as Ed would say, “Be Extraordinary?”