Archive for the ‘Transformational Experiences’ Category

Ed Roberts | “Be Extraordinary!”

In March, we celebrate the birthdays of two great civil rights leaders, Martin Luther King and Ed Roberts. Most Americans know of Dr. King’s achievements but few know of Ed Roberts, the “Father of the Independent Living Movement” for people with disabilities.

Edward Roberts' Day Jan. 23, 2011

Ed Roberts Honored on his Birthday, Jan. 23.

California is the first state to officially designate January 23, 2011 as Ed Roberts’ Day. This is an opportunity for the media, public and private citizens to learn about Ed Roberts and the 50 million Americans living with disabilities.

But this day is about more than celebrating the life of a great American and pioneer in the civil rights movement of people with disabilities. This is a day to embrace Ed Roberts’ challenge to “Be Extraordinary!”

An Ordinary Kid Transforms

Ed Roberts often joked he started his life “just an ordinary kid” who was more interested in sports than school work. That all changed.

In 1953, when Ed was fourteen, he 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 see the possibilities, and adapt. When Ed got comfortable with his new body, he figured a baseball career was out but he knew he could still use his mind.

Ed became an Advocate for Himself and Others.

His mother, Zona Roberts, listened and helped him advocate for his own rights. When a high school administrator threatened to deny him a diploma because he couldn’t take physical education and driver’s education, Ed appealed to the school board and won.

He learned sometimes you adapt, but other times you fight discrimination and stand up for justice and equality.

When he entered the University of California at Berkeley (UCB), the newspaper ran an article saying, “Helpless Cripple Enters UCB.” Others might think he was a “helpless cripple,” but Ed knew better.

When physical barriers, like steps, prevented him from entering buildings, and other students were losing critical support services, Ed helped organize a protest which established the first student-led disability support services program at a university.

Ed got his BA and MA in Political Science. He finished all the coursework for his Doctorate (ABD) and taught at UCB for six years.

Ed Roberts paved the way for thousands of students with disabilities to go into higher education.

Ed married his college sweetheart and despite the medical doctors saying it was impossible, they had a beautiful son who was the pride of Ed’s life.

Ed Roberts the “Father of Independent Living”

Who Decides? The Birth of Self-Determination.

In Ed’s life, the dominant cultural view of people with disabilities was based on pity, charity, “better off dead,” and segregation. These attitudes marginalized the voices of people with disabilities and made them invisible in the culture. Ed met people who thought he belonged in an institution “with his own kind.”

He believed people with disabilities were “People First” who could speak for themselves and tell you what they liked, disliked, wanted, and needed. Instead of discrediting their knowledge, Ed and the Disability Rights self-advocates raised their voices and demanded to be heard.

Ed Roberts created the paradigm shift from Pity and Charity to Dignity and Self-Determination.

As I talked about in another post, Ed challenged these core attitudes of What is charity? (click here)

Accessibility

Ed fought for the first curb cut. When the city bureaucrats asked, “Why do we need curb cuts when we never see people in wheelchairs on the streets?” Ed calmly explained that was circular logic. This conversation was repeated in cities all over the country until the passage of the American’s with Disabilities Act (1990) required accessibility as a civil right.

Accessibility was more than just curb cuts. Ed worked for access to technology, transportation, jobs, voting, housing, inclusion in regular schools and every part of life. With Olmstead, he advocated to free people with disabilities from nursing homes and institutions.

Universal Design

Universal Design changes the attitude of charity. Accessible buildings, transportation systems, learning and education philosophies, communication and technology were NOT just for “poor cripples” they were for everyone.

Ed also understood basic dignity and civil rights were for everyone. After all, people with disabilities cross all ethnic, race, gender and class lines. He met with leaders in the Native American, African American, Women, Seniors, and Hispanic movements.

He created a common dialogue arguing, “All men (and women) are created equal”–including those who use breathing machines, wheelchairs, Braille and communication boards.

When those first curb cuts were made, all of a sudden it was easier for people with baby strollers, bikes, people who were elderly and people making deliveries….

Temporarily Able-Bodied or the Yets

In another post I talked about Ed’s concept of the Temporarily Able-Bodied (click here).

This was controversial because many people don’t like to consider they can join the ranks of the disabled in a moment. But again, Ed taught us having a disability is NOT the end of the world. Disability is just a part of the human condition.

Self-Determination

Ed helped create the nation’s first Center for Independent Living (CIL) which became the model for the world.

People with disabilities were taught self-help skills and personal responsibility. They learned to not be victims or eternal children, but rather to be adults and take control of their lives.

Ed was the first speaker at the Partners in Policymaking program. Like his mother Zona, he encouraged the parents expect their children to grow into independent adults. Effective Strategies for Social Change: Video of Ed Roberts Speaking at the First Partners in Policymaking Session (May 1, 1987)

Gov. Jerry Brown appointed Ed Roberts Director of the Department of Rehabilitation for the state of California in 1975. Ed supported the passage of Section 504 of the Rehabilitation Act and saw many of his ideas implemented. He served until 1983 when he co-founded the World Institute on Disability. He traveled the globe and developed a world-wide movement of, with and for people with disabilities. Ed Roberts really did change the world (as well as many airlines).

Ed died in 1995 from natural causes but his legacy continues with his son, his friends and a thankful nation. The lives of people with disabilities and ALL of us are better because of his spirit, vision and life.

In Ed’s Own Words:

Text of Remarks by Ed Roberts at Section 504 Sit-in Victory Rally in San Francisco on April 30, 1977.

“We have begun to ensure a future for ourselves, and a future for the millions of young people with disabilities, who I think will find a new world as they begin to grow up. Who may not have to suffer the kinds of discrimination we have suffered in our own lives. But that if they do suffer it, they’ll be strong and they’ll fight back.

And that’s the greatest example, that we, who are considered the weakest, the most helpless people in our society, are the strongest, and will not tolerate segregation, will not tolerate a society which sees us as less than whole people. But that we will together, with our friends, will reshape the image that this society has of us.

We are no longer asking for charity, we are demanding our rights.”

Summary:

Ed Roberts was a pioneer for the civil rights of people with disabilities.

Like Martin Luther King, he had a Dream that celebrates diversity for people of all races, and abilities.

He helped us see the stigma and segregation of disability as meaningless—we are all either “disabled, or the yet to be disabled.” We are all part of the human family and while we need each other, we each want self-determination in our own lives.

The journey toward inclusion continues as we replace the physical and attitudianal barriers of discrimination, segregation and the charity model with inclusion, universal design and civil rights.

Ed was extraordinary.

Be Extraordinary!

Ed Roberts couldn’t walk, couldn’t feed himself, couldn’t dress or shave himself. He couldn’t even breathe by himself. Yet look what he accomplished.

Ed continues to challenge us to see ourselves as perfect –just the way we are. He continues to inspire us with his ideas to Be Extraordinary.

We really have no excuses.

What can YOU do today to spread the word about Ed Roberts and the civil rights movement of people with disabilities?

What can YOU do today to help change physical and attitudinal barriers for ALL people?

Will YOU accept his challenge to also Be Extraordinary ?

Keep Climbing: Onward and Upward

All the Best,

Mary

Comments:

Please share your thoughts. Big or small, each action you take will spread the word.

Please take a minute and visit the MN Governor’s DD Planning Council’s tribute to Ed Roberts. See videos of Ed’s presentations.

ps. We are looking for help editing the videos into 1-3 min. segments for YouTube. If you are interested please contact me.

Twas the Night Before Christmas

“Toyland, toyland, magical girl and boy land. Once you cross its borders, you can never return again.” (Babes in Toyland)

There’s No Santa

Aaron and Tommy got off the school bus and our world changed.

Tommy walked in the front door, threw his backpack in the corner and announced “There’s no Santa Claus.” Apparently, Billy and Josh minced no words on the bus ride home. And, they were third graders who knew these things.

Aaron, my son with the label of autism, went straight to the refridge.

But what is a mother to do?

I got Aaron settled with a snack and his music and then sat next to Tommy on the couch. We both were facing the Christmas tree and feeling pretty glum when he crawled into my lap. That action alone choked me with tears. Tommy was seven years old and seldom let me hold him on my lap any more–yet another reminder my baby was growing up.

His happy world was just turned upside-down.

Like all parents, I knew this moment would come. And, I wanted to send coal to Billy and Josh for ruining the fun.

I knew this was one of those rite-of-passages, a transformational moment in his young life–but darn. It seemed just yesterday he was three and running down the steps on Christmas morning, diving into the presents from Santa–darn, darn.

For a long time, we watched the reflection of the lights on the tree ornaments and didn’t say anything.

It was a treasured moment but I was desperately trying to think of how to keep the magic. How could I patch up the hole of a Santa that no longer was real?

Sure we’ve had some close calls, i.e. St. Nick and the Batman socks. But this time, there was no going back.

Tommy finally started talking and asked some questions. He said he had suspicions because the whole Santa-goes-around-the-world-in-one-night is a little hard to believe. But, but, but.

There were the things he said: “So there’s no Easter Bunny, or Tooth Fairy…?” “Was God real?”

And the things he didn’t say: “Did all adults lie, trick kids and play games with them?” “Who could he now trust?”

I tried to put myself into his world and think of ways he might understand. My explanation that Santa was a make-believe superhero bombed. Later, I could talk about Jesus and the gifts of the Magi, but that seemed abstract for the current moment.

Changing Roles

I’m not sure what inspired me, but as Tommy sat in my arms with his chin on his chest, I suggested Santa was a tradition about giving.

“The Santa tradition” was a fun way for everyone to be an actor in a giant real life magic play. It didn’t matter your age, it was about finding someone who needed cheering up, or needed help and giving it to them.

I told him little kids didn’t understand this, but big kids like him, now got to be part of the fun by becoming a Secret Santa to others. This seemed to make sense to Tommy.

Okay, who could we surprise? Who needed some Christmas cheer?

Tommy’s grandparents had just separated after a long and unhappy marriage. Grandpa had moved into a basement apartment in a not-so-great neighborhood and told the family, “This year I’m keeping it simple and not putting up a Christmas tree.”

So that minute, Tommy started to plan a Christmas makeover for Grandpa’s apartment. Tommy decided to become a Secret Santa.

Secret Santa

For the next few days, Tommy spent every minute making decorations, planning how to sneak into Grandpa’s apartment, going shopping for supplies and a small tree….

He decided we needed cookies and put me and Aaron to work.

Age-Appropriate

Aaron was nine years old. If Tommy (two years younger) no longer believed in Santa, then it was no longer age-appropriate for Aaron to believe in Santa either. Tommy was always my measure of “normalization” for Aaron.

I know some parents who, when they are told their child has severe intellectual disabilities or Down syndrome or…console themselves, “Well, at least they will always believe in Santa Claus.”

I know parents, special needs charity groups, care providers and teachers who take adults with disabilities to sit on Santa’s lap at the mall. In groups. UGH!

I know some adults with disabilities who have flat-out refused to go saying it embarrassed them. I know others who do it just to please others. I know some adults with disabilities who just haven’t had the guidance to know better.

The RULE for age-appropriate and normalization is: “Would a person without a disability do this?” “Will this activity add or subtract to a person’s positive image in the community?”

In this case, an adult with a disability sitting on Santa’s lap in the mall makes them seem like an “eternal child” not an adult who will live and work as a contributing member to the community.

This is a difficult concept for a lot of people. But this was the right move for Aaron and our family.

Grandpa’s Surprise

On Christmas Eve Tommy, Aaron, Tom and I got the key to Grandpa’s apartment and put on our red Santa hats. In under an hour, we decorated the tree, put holiday towels in the bathroom and kitchen, added colorful plants and pillows to his living room and his favorite snacks in the fridge. Tommy posted his drawings all over the apartment with a note next to a plate of sugar cookies:

Dear Al,

I heard you were a good boy this year.

Happy Christmas.

Love,

Secret Santa

Babes in Toyland

Tommy glowed as he locked Grandpa’s door. As we got into the sleigh (er, car) we giggled, reviewed our Christmas caper, sang carols and drove out of sight.

When we stopped for burgers and fries (even Secret Santas have to eat) Tommy decided to continue wearing his Santa hat. Aaron–not so much. But my babes had transformed.

There was still Santa and giving and Christmas. But they were no longer the “Babes in Toyland.”

From now on, Mom’s IEP for the holidays would have to include our new roles as Secret Santas.

Over the next years, more innocence would be lost. There would be new lessons and transformations–but that is all part of growing and learning. It is all part of the magic of being a child. Being a parent. And, all part of the Santa Tradition.

Keep Climbing: Onward and Upward

Mary

Share your Santa story:

How did you find out about Santa Claus? What are some of the ways you continue the tradition of giving? Any Secret Santa stories? Any thoughts on normalization and age-appropriate?

St. Nick and the Batman Socks

photo credit: frannie60

In Christmas 1981, Cincinnati Public Schools was involved in two class-action lawsuits. Our family was caught up in both of them.

The first concerned the right of Aaron, our then seven year old son, who had an IQ below fifty and the labels of autism and intellectual disability, to be able to attend public school instead of a segregated handicapped-only school, “with his own kind.”

The second lawsuit was about racial segregation and the development of “magnet schools” to bring together children of different races, socio-economic backgrounds, and learning styles. We voluntarily enrolled our youngest son, Tommy, age five, into Sands’ Montessori School in the inner city to promote desegregation.

While the lawyers thought the two cases were different, our family knew they were both about building an inclusive community, valuing diversity, and learning from each other.

One of our first lessons about diversity came on St. Nick’s Feastday, Dec. 6th.

In true German tradition, the evening before St. Nick’s Feastday, Tommy wrote letters to Santa for both himself and Aaron, tucked them inside their shoes and placed them outside their bedroom door.

The next morning, Tommy was thrilled to find St. Nick left a note asking him to help spread the spirit of Christmas, be nice to his mother (ah-hem), a couple of candy bars and a pair of Batman socks.

Tommy was always shy. But he was so excited to show off his Batman socks he strutted in front of the mirror, decided his pants covered too much of the socks, and tucked his pants legs inside his socks. Batman socks ruled!

I of course, thought this was darling, took pictures for his Kindergarten scrapbook and drove him to school thinking I was one terrific mom, er, St. Nick.

Tommy joined his class, and I was hanging out with the school secretaries when Tommy’s teacher called into the office asking me to come to the kindergarten room. Over the PA I could hear Tommy sobbing and the rest of the children clearly agitated.

It took a couple of minutes to sort out the details, but apparently Tommy had proudly shown his Batman socks at Show and Tell.

What he learned was no one else in the class had ever heard of St. Nick. And what was worse, St. Nick did not pick up anyone else’s note to Santa. So using sophisticated kindergarten logic, that meant no one–except Tommy–was going to get anything for Christmas.

Further, Tommy felt terrible he hadn’t told them about St. Nick. He reckoned this mess was all his fault. He was “not spreading Christmas cheer” as he had been told in St. Nick’s message, so Santa would be mad at him and not give him anything either.

Tommy’s tear-streaked face would have been bad enough, but he was curled under a desk in the corner with his bare feet hanging out. His Batman socks were inside-out in the garbage can.

Well, this was clearly a kindergarten disaster of monumental proportions. Tommy’s caring teacher and I exchanged those adult looks that said we were supposed to fix this. We settled the children.

I brought Tommy back into the circle, held him in my lap and reassured two other children who were sitting nearby.

Mr. Leedom read Marcia Brown’s story, Stone Soup.

Stone Soup

Stone SoupThe moral of the story is if we think in terms of “gifts” instead of “scarcity,” and if we see the unique beauty in our differences, customs and traditions, we will all have a richer life.

Community Building

After the teacher finished the story, I fumbled out a few words about our class being a community just like the people in the story.

Sometimes our family or religious traditions are not familiar to everyone. Just like each of the families in the story Stone Soup, our class was full of families that could contribute special stories and traditions to celebrate the holidays.

(Kindergartners are very generous in allowing grown-ups to tell stories to make themselves feel better.)

I told them St. Nick came to our house because we were of German descent. I asked if anyone else had other traditions around the holidays and one student told the story of Kwanzaa, another about Hanukkah. I reassured everyone they needed to talk with their families about their holiday traditions, but that if Santa brought them gifts last year, he would surely bring them gifts this year.

As I looked around the circle at these children I had come to love, it dawned on me this was not the all-white, German Catholic, middle-class community school in which I had grown up.

This was exactly the kind of learning experience we wished for our sons.

Intellectually, I knew this was why we chose this school. This sharing was the gift of diversity and inclusion.

But this was more. This experience was a transformational moment for me, Tommy and perhaps some of the students.

Community Building Mix

The next day I brought in the ingredients for our own version of Stone Soup– “Building Community Snack Mix” and gave each of the students a Batman sticker.
For more information click on the community building mix.

Batman Socks Rule!

Tommy did get his Batman socks out of the garbage can. He wore them all kindergarten and into first grade until they were faded and had a hole in the heel. The Batman socks are part of his childhood legacy.

New St. Nick Traditions

Each year, for the last thirty years, we have placed the worn, torn Batman socks on our Christmas tree.

Now Tommy has a little girl of his own.

I want to wait a couple Christmases. But when our grandbaby goes to Kindergarten, the Batman socks are again going back to Tommy for his St. Nick’s Day present.

Hopefully, the story of “St. Nick and the Batman Socks” will become a cherished tradition to share with his daughter…and will continue to teach about diversity, community building and inclusion.

Comments:

Do you have any St. Nick or holiday traditions that are unique to your family? Do you have any school memories about lessons in diversity, community building or inclusion? Do you have other ideas on how to build community during the holidays?

Keep Climbing: Onward and Upward

All the best, Mary

Aimee Mullins Rocks

Remember Susan Boyle and the sensation she made singing, “I dreamed a dream”? Well, I think this video by Aimee Mullins has the same kind of transformational power.

Watch it and take notes because: 1. There are some amazing one liners. 2. I’m counting on you adding a comment and expanding the discussion (Hah, you can take the teacher out of the classroom…

Aimee Mullins at the TED conference

Is that a WOW or What?

TED is for the “thought leaders” of our generation. I’m so glad Aimee Mullins stood up in front of the world and talked about the words we use, the way we tell stories, our prejudices about people with disabilities and our ability to change and influence lives.

I’m thrilled she is beautiful, an accomplished athlete, and can deliver a message with the best communicators in the world. Chalk one up for our side. Aimee you did us proud.

Language

I was really struck by the definitions. Yes, even in 2010 the words “disability” and “handicap” carry such derogatory connotations. Every time I hear the traffic report and they say, “there’s a disabled blocking the west lane” I just cringe.

I recently spent some time looking up the words: “retarded, moron, idiot and imbecile” and their histories (click here for related article).

Aimee talking about the negative effect these labels would have made on her when she was a young child was sobering. (See related article on the difference between handicap and disability.)

I particularly liked Aimee’s references to Darwin. Our ability to adapt, change, and transform determines the “survival of the fittest”.

Inclusion is our “survival of the fittest.”

This is why I believe in inclusion I agree it means the difference between survival and a decent quality of life. (related article).

Inclusion is about adapting, changing and transforming. It is about blending into the normal population the same way animals learn to camouflage themselves into their environments

The medical doctor saying that she was an example of the “X” factor was my takeaway moment.

WE ARE THE X FACTOR.

If you are interested in my take on the differences between the label of “disability” and “handicapped” (click here). I would love to be able to pass this information on to Aimee. Perhaps it might help.

Come Dance With Me: Share your thoughts.

Were there any new ideas? Which of Aimee’s stories did you think were the most powerful? Do you have any stories about Medical or Educational professionals? What message would you want to send to Aimee? To her parents? To the medical professionals? If you had a chance to be a thought leader, what would you talk about?

Keep Climbing: Onward and Upward

All my best, Mary

Parents and advocates of people with disabilities have a love-hate relationship with professionals because they don’t give up.

photo credit: freeparking
photo credit: Powerhouse Museum Collection

I’m Thankful for Parents and Advocates

You know the ones.

They never give up.

They ask the tough questions.
They demand answers.

They show up at budget meetings and want copies of the agenda and handouts.

They show up at board meetings and introduce their child.

They study the friggin’ law and quote it at you.

They call the State Department when they can’t get what they want at the local level.

They are politically savy–not politically correct.

No matter how many times we tell them, “You are not credible because you are too emotionally invested,” They won’t give up.

They don’t care the budget has been cut.
They don’t care we are sharing offices and there is no toner for the copy machine.

They aren’t reasonable about “waiting”… or accepting excuses for shoddy performance…or people who don’t call them back.

They embarrass us by going to meetings where they are the only unpaid person in the room, and they are more prepared then we are. And they go to more meetings… and more meetings.

They just won’t give up.

If we try to slip one by, it’s like they have built-in radar. They just seem to know when we filled a staffing gap with an inexperienced person, or if the caregiver had a beer.

If we tell them the “research says”–they want to see the research.

They give us copies of new research.

They call the researchers–collect.

They even have the nerve to point out flaws in the research studies and want their child in the next study.

If we tell them they can’t possibly understand the research, they read books, network, take courses until they become the experts. Some even get their Doctorate degrees.

They insist we don’t give up.

When we do something right, they tell us we are wonderful and they are thankful, BUT….

Damn, there is always a BUT.

When we tell them to “Trust Us,” they smile and tell us that is like asking GreenPeace to “trust” the oil companies.

They just won’t give up.

Damn, they drive us nuts….
But we know that after we retire and get our pensions, they will still have to be harrassing our replacement because their child will always need someone to advocate for them.

We respect them because we know they force us to do a better job.

We know that when they are helping their child, they are also helping all children.

We love them because their motives are pure and they make the world a better place.

And most of all, we admire them because they don’t give up.

This is dedicated to:

Mary and Oliver Triplett

They were the parents who ignored advice from the professionals and kept their son Donald home from the institution. Their son became the famous Donald T. in Leo Kanner’s research article identifying the phenomenon he named autism. This article in The Atlantic shows how Donald is living today. Though the story is about Donald–I think it is his parents’ love and advocacy that is the REAL STORY (click here).

Anne McDonald and Rosemary Crossley

Anne McDonald and Rosemary Crossley kept teaching us all about the right to communicate, and they didn’t give up.(click here).

Jon Morrow

Jon Morrow is an associate editor on CopyBlogger whose blog article: On Dying, Mothers, and Fighting for Your Ideas went viral. He is a success story and has done amazing things, but when you are reading this, think of his mom.
(click here).

Nina and Joseph Marcellinos

Nina and Joseph Marcellinos knew the word “retarded” hurt their daughter’s future–and they didn’t give up until they changed the Federal Law. (click here).

Tell us about your experiences:

Do you know any remarkable parents and/or advocates? Do you love, hate, respect, admire, despise them?

When you are reading about great advances for people with disabilities, the elderly, children… do you look underneath the headlines and see the parents and advocates? Have you done something where, against the odds, you didn’t give up?

Keep Climbing: Onward and Upward

All the Best,
Mary

Isn't this cute, I'll save it forever

Hand-Print Turkeys

The first time Aaron brought home a hand-print turkey he was 3 years old and I thought it was adorable.

HOWEVER

When Aaron was 25 years old and brought home the same hand-print turkey, I was livid.

Kill the Turkey!

What’s the difference? Same kid, same activity. Why is one turkey a treasure, another only fit for the garbage?

The difference is the educational and philosophical debate between “developmentally age-appropriate” and “chronologically age-appropriate” activities for people with autism and developmental disabilities.

In a previous post, I introduced Dr. Lou Brown’s ecological assessment tool the “Life Space Analysis” (click here) This planning tool for people with disabilities helps identify the when, where, who and what fills a person’s day and gives clues on a person’s quality of life–though this tool can be useful for all of us.

1970s: The Birth of Special Education

Back in the 70s when IDEA was passed and people with disabilities first got the right to go to public school, everyone was trying to figure out how people with disabilities learned? What were the appropriate activities and curriculum? If you want more information about this time period click here: Parallels in Time II.”

Dr. Lou Brown and his colleagues found adolescents and adults across the country playing with infant toys. The “what” in their Life Space Analysis consisted of meaningless activities repeated every day like: coloring, stacking blocks, putting colored rings on tubes, playing with wooden puzzles and generally keeping Fisher Price in business.

The rationale was these students were eternal children. It didn’t make any difference what they did. There were no expectations. They had low IQs and were functioning at a preschool or early childhood developmental level. So teachers used materials and activities matching the student’s developmental levels. For example: If a person had an IQ of 50 and a developmental age of 5.2 (6 years and 2 months), then the person with the disability should do activities that matched what a normal 5.2 month old child would do. It didn’t matter if the “child” was actually 19 or 35, or 70 in chronological years.

2010: Adult Services

I have to admit, I thought the idea of developmental age was long dead. Aaron went to public school and had plans for his future as an adult (click here). He had a functional community based curriculum, he had a transition plan, and he had work experiences. Plus, the research in the whole field of special education and adult services, strongly supports the idea of chronologically age-appropriate activities.

So, again: What’s the Problem?

In my recent round of looking at adult day care for people with disabilities and the elderly, I have been shocked out of my mind to find rooms with Fisher Price toys. I know the toys are indestructible, but come on. They are NOT AGE-Appropriate! If the toy package says ages 3-6, then if you are over 6 years old, it is not age-appropriate.

Schools vs. Adult Day Care

The difference between best practice in the schools and best practice in adult services is the fact that the staff and teachers are licensed. They have training and have studied the research literature about best practices. They have done student teaching and got first hand experiences under mentor teachers.

The people who run and work in the adult day care systems are lovely people who have high school diploma’s (or GEDs) and because the job pays little more than minimum wage, they get no inservice, no vision of what CAN happen. They have the reality of too many people with disabilities, not enough help, and no training. So making preschool turkeys, or paper plate pilgrims makes sense to them. The materials are cheap and the activity matches their developmental ages.

Thankful?

Being Thankful

I am thankful Aaron has some place to go during the day. (Some states have nothing and the people sit at home.)

I am thankful these kind people don’t abuse and hurt Aaron.

I am thankful they take him to the bathroom, wipe up his messes, help him eat his lunch, and do their best.

But, they send home a paper plate bunny, toilet paper firecracker, macaroni Santa… And I am not thankful.

I don’t have an answer. I have tried to send in more age-appropriate materials and resources. I have tried to show alternative activities. And they are not thankful.

Comments:

What do you think? Is my age-appropriate rant just silly? What do you think I should do the next time Aaron brings home a preschool craft? Do you think the types of activities makes a difference to the people with disabilities?

If this makes sense and you want to spread the word, please retweet or link to Facebook. We have a whole lot of people to reach before the Christmas and holiday crafts begin.

I would be thankful.

Keep Climbing: Onward and Upward

Mary

Brown, L., Branston, M., Hamre Nietupski, S., Pumpian, I., Certo, N. & Gruenewald, L. (1979). A Strategy for Developing Chronological Age Appropriate and Functional Curricular Content For Severely Handicapped Adolescents and Young Adults. Journal of Special Education, 13(1), 81 – 90.

Aaron and 4 Generations of Family

“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

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: 2010:

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.

Comments:

How are Aaron and Tommy’s dream plans different? At age 6 and age 22 and age 35? 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,

Mary

Who said Aaron was slow?

Build a dream and the dream will build you. R. Schuller.

What is Normalization?

In 1981 when Aaron was 6 years old, my friend Debbie Wetzel and I drove to Louisville, KY to hear Wolf Wolfensberger give a presentation on “Normalization” or “Social Role Valorization” as he renamed it.

Like many parents before us, this philosophy changed our whole way of looking at our children and their futures.

As Debbie said about her daughter, “Jenni is not going to lead her life wrapped up in cotton and stuck on a shelf. She is going to have as normal a life as possible.”

On the ride home we also talked about what this new way of thinking was going to mean for us as mothers and advocates. We knew our lives were forever changed. The segregated services that were currently our only options were no longer acceptable. We would no longer allow our young children to get on segregated busses taking them an hour-and-a-half across town to segregated schools and handicap-only recreation programs.

When I got home I outlined the following plans that were ambitious and I knew (based on what we were currently fighting with our school district) maybe impossible to achieve.

The dream plans were based on what I had just learned about normalization and compared my dreams for Aaron, age 6, my son with the label of autism and developmental disabilities and Tommy, age 4, with the label of typicalness.

The concept of building community and normalized environments set the course of my life.

In part 2 and 3, I will be showing you how this 1981 dream evolved. Remember the language is from 1981 when we talked with words like retarded and group homes. This will evolve too.

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.

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.

Normalization means…

The principle of Normalization originated in Scandinavia by Bank-Mikkelsen who began to compare his own life with the lives of residents in institutions for people who were then called “idiots, morons and imbeciles.” (Today we would say they have “intellectual disabilities” see related post on Rosa’s Law.)

Bengt Nirje a leader in the Swedish parent movement expressed it best:

Normalization means…

a normal rhythm of the day.

You get out of bed in the morning, even if you are profoundly retarded and physically handicapped;
You get dressed and leave the house for school or work, you don’t stay home;
In the morning you anticipate events, in the evening you think back on what you have accomplished;
The day is not a monotonous 24 hours with every minute endless.

You eat at normal times of the day and in a normal fashion;
Not just with a spoon, unless you are an infant;
Not in bed, but at a table;
Not early in the afternoon for the convenience of the staff.

Normalization means…

a normal rhythm of the week.

You live in one place, go to work in another, and participate in leisure activities in yet another.
You anticipate leisure activities on weekends, and look foward to getting back to school or work on Monday.

Normalization means…

a normal rhythm of the year.

A vacation to break the routine of the year.
Seasonal changes bring with them a variety of types of food, work, cultural events, sports, leisure activities.
Just think…we thrive on these seasonal changes.

Normalization means…

normal developmental experiences of the life cycle.

In childhood children, but not adults, go to summer camps.
In adolescence, one is intersted in grooming, hairstyles, music, boyfriends and girlfriends.
In adulthood, life is filled with work and responsibilities.
In old age, one has memories to look back on, and can enjoy the wisdom of experience.

Normalization means…

having a range of choices, wishes, desires respected and considered.

Adults have the freedom to decide where they would like to live, what kind of job they would like to have and can best perform.
Whether they would prefer to go bowling with a group, instead of staying home to watch television.

Normalization means…

living in a world made of two sexes.

Children and adults both develop relationships with members of the opporite sex.
Teenagers become interested in having boyfriends and girlfriends.
And adults may fall in love, and decide to marry.

Normalization means…

the right to normal economic standards.

All of us have basic financial privileges and responsibilities;
Are able to take advantage of compensatory economic security means, such as child allowances, old age pensions, and minimum wage regulations.
We should have money to decide how to spend, on personal luxuries or necessities.

Normalization means…

living in normal housing in a normal neighborhood.

Not in a large facility with 20, 50, or 100 other people because you are retarded;
And not isolated from the rest of the community.
Normal locations and normal size homes will give residents better opportunities for successful integation with their communities.

W. Wolfensberger; B. Nirje; S. Olshansky; R. Perske; and P. Roos, The Principle of Normalization in Human Services (Toronto: National Institute on Mental Retardation, 1972).

Recently Anne McDonald died, her story Annie Coming Out told of what it was like to live in an institution–not normal environments–where you were only seen as a group, never an individual (see related story).

If you are interested in more information about the history of people with disabilities, institutional settings and/or the parent movement check out Parallels in Time I (click here) and II (click here.)

Comments:

Have you ever gone to a lecture or workshop and come out a different person? Do you agree with the principle of normalization? Can a person with and without a disability both lead normal lives?

Keep Climbing: Onward and Upward

All my best,
Mary

photo credit: crimsong19

Building Community: One Grocery Trip at a Time

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

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

Establishing Routines

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

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

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

We usually go to the same store.

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

We try to build a relationship with the store personnel.

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

But I never know what’s going to happen.

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

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

Being ready for surprises

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

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

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

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

Aaron gave him a side-ways glance.

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

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

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

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

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

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

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

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

Finding More than Groceries

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

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

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

YOUR TURN

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

Keep Climbing: Onward and Upward

Mary

photo credit: nursing pins

Nursing and Caring during WWII

My mom became a nurse during WWII. One of her first assignments involved going into the homes of elderly people in the Washington, DC area. Many of these older Americans were by themselves because their adult children were serving in the war. These were regular patients she saw every week and she would give them their shots, medication, baths, change bandages… whatever they needed. Mom told stories about how her best medicine was often listening. They were scared, lonely and she would read the precious letters that came from faraway places and help them write back. One afternoon she was with an elderly couple as the military officers told them their son had been killed in action. She gave each person personal attention and dignity.

Her patients were personal. She knew them and their stories. She cared about them.

After each home visit, she and her companion (they traveled in twos) would take the bus or trolley cars back to the dorm where all the nurses lived. She had to wash, press and starch her uniform (this was before modern washers and dryers), she had to write her reports (this was before computers) and she had to make sure she was inside the dorm before 10 PM or she would be marked a fallen woman and unworthy to be a nurse.

After the war she married my dad and had five children in six years, with another child 4 years later–six children total. When the children were all school-age, she again became a part-time ER and Recovery Room nurse.

Nursing and Caring in 2010

Mom always loved hospitals and everything medical. Even now at 88 years old, she remembers the names and doses of each of her 15 medications. She tries to remember the nursing staff but there are too many of them.
This afternoon I stayed in her room while a steady stream of professionals did the prep work for her hip replacement surgery. They had her IV running; she was given preventative medicine for vomiting and acid reflux. She had one tube taped into her artery so during the surgery additional meds could be given without needle pricks. Everything was plastic, disposable, and sterile.

Everything was Impersonal

Each of the medical professionals seemed competent and efficient. They explained the procedures, they reassured her that her doctor was the best; they had amazing machines that beeped and whirled. But, even with me standing there, no one cared who mom was. She was the “hip replacement in room 424.”

Again, this was a state-of-the-art hospital with excellent nurses. Everyone was super nice and competent. On the bulletin board near her bed “Helen” was written in large green markers. Each of her nurses also signed the bulletin board so she would know the name of the staff person.

Games of Caring

In this game of “name that patient” and “ring-around-revolving staff” It did seem disrespectful that a twenty-something staff person would address her as “Helen” like they were best buds.

In Disability World, we have often dealt with staff whose job was to write a report and then give their expertise as to what was best for Aaron. Sometimes the prejudice and low expections of the professionals are dangerous to the person (click here). As an advocate, I’ve been in meetings when psychologists (they were the worst) would go over their whole report with recommendations for placements or goals and they never even met the person. They claimed to know the person better than the biased parents or teachers…. Advocates always recommend parents bring a picture of their child to the meeting. I know of one case where the psychologist wrote the report up on the wrong person.

Always the Advocate

Learning to be an advocate is useful in so many situations. I knew the research says people who are perceived as important, wealthy, or famous get better care than people who are anonymous, weak and ordinary.

As the two nurses maneuvered the hospital bed into the elevator with the soft music and the doors which opened in the front and back, I looked at my mom. Here was this frail 88 year old woman with her white hair mussed in bed head. Her skin kind of draped loosely around her eyes, mouth and neck. She insisted on putting on her lipstick before she went, so her bright red lips were in contrast to her pale waxy complexion.

She was just another old person to these nurses. She didn’t have a story.

Going from Nurse to Patient to Nurse

On the elevator ride down to surgery, I told the nurses about her history. Suddenly mom was not a nobody. She became a real person—more than just the patient they were fitting into the schedule, the last surgery of the day, the hip-replacement in room 424.

In the elevator ride down to surgery, I shared some of mom’s stories about the changes in nursing, hospitals and medicine. We talked about the old days when mom wore starched white uniforms and hats–not permanent press colorful smocks and gym shoes with disposable covers. Think about it, in the fifties the hospitals were not air-conditioned (it was 85 degrees today) and many hospitals didn’t even have elevators. I told them how she visited the sick and elderly in their homes.

We were in the elevator for probably 4 minutes. That was all it took.

The Human Story Makes the Difference

Now, the old lady “Helen” was a nurse who worked when nurses really knew their patients. She was not a stranger; she was a nurse–one of them. She was a pioneer who paved the way for these two women pushing her bed. She was also a future THEM in 50 years when their hair would be mussed with bed-head and they would need caring nurses.

When we reached the doors to the surgery department, I kissed my mom on her red lipstick. This time when the nurse said, “Helen, we’ll take good care of you.” I smiled and knew “Helen” was now a real person and would get both dignity and good care.

Share YOUR Story:

Come on, I’m sure you have some comment about hospitals, medical or school professionals and caring?????

Keep Climbing: Onward and Upward,
All the best,

Mary

Day 21 of our Chris Brogan’s Every-Day-For-30-Days Blogging Challenge Follow us on Twitter #CB30BC

Alison Golden of The Secret Life of a Warrior Woman is my partner in this challenge: (click here to check out her new post.)