Posts Tagged ‘self-determination’
To celebrate the new school year here are some of my favorite posts:
Article 1: Why Do We Go to School?
Article 2: Back to School| A New Year of Learning
Article 3: Back to School| What is Inclusion?
When my son Aaron was in school, shopping was part of his curriculum. From the time he was ten years old he went to the bank and grocery one day a week as part of his special education school program.
This was best practice and came from the work of Drs. Lou Brown, Alison Ford, Sharon Freagon and many others. The idea of a functional curriculum for people with autism, intellectual and developmental disabilities is:
* it takes longer to learn skills, so let’s make sure we teach important skills and not waste their time on dumb stuff
* it takes lots of practice, so let’s give the student lots of opportunities and trials
* use it or lose it, so let’s make sure the skill is something the student will need their whole life
* transition from school to adult life will be smoother
* we only teach skills that if the person didn’t do it, someone else would have to do it for them
* the ability to purchase items would give the person more dignity, self-esteem, self-determination skills and choices in their life
The way it worked was each week, Mom sent in a check for $10.00 and a shopping list. The class went to the same grocery store (because each store is different). Each student cashed their check at the bank and then bought items from the list to take home.
In addition, students also planned a lunch to be made in the classroom the following day. Each would purchase a couple items for that group lunch. These items were purchased with the classroom credit card.
This functional curriculum was based on the philosophy that Aaron would go to the grocery the rest of his life. Before the school year started the IEP team decided this was a high priority skill because he would need to buy food and other items when he was an adult. If he didn’t learn to purchase these items, someone else would have to buy them for him. If Aaron could purchase the items he would have more choices and say in his life and therefore a better quality of life. (Who wants someone else deciding you can only have Cheerios for breakfast all your life.)
Related Service Staff
The curriculum was designed by the IEP team including specialists and the parents. After all, who would be taking the student to the grocery on the weekends, summer, and after school. And who knew what the student liked better than their parents?
I was in the school a lot and went on many of the community training trips with Aaron and his class.
It takes a Village
The speech and language therapist helped Aaron build picture sequences of “shopping at Krogers,” check-off lists with pictures for grocery lists, and learn to interact with the cashier “Thank You” and give a High 5 to the bagger….
The occupational therapist helped Aaron figure out which coin purse/wallet worked best, learn to pay with the next highest bill, learn how to take the money out of his wallet (hold wallet in left hand and take out bills with right) and after many failures of getting the change back in the wallet–it was decided Aaron should just put the change in his pocket….
The physical therapist helped Aaron figure out how to climb up and down the steps on the bus (hold on the rail with his right hand and count the steps), how to maneuver the parking lot (and yes we had an IEP goal that said with 50% accuracy), how to enter the right door–even if there are two “in” doors,
how to reach the items on the bottom shelves (hold on to the grocery cart with his left hand and reach with his right)….
Depending on the therapists schedules, they might only be involved in periodic assessments, or they could go with the class every week. This was an excellent way for the therapist got to really see Aaron in this environment and practice REAL life skills.
The teacher and assistant teachers went every week with the 6-8 students in the multi-handicapped class. She/he helped Aaron match his pictures to the actual items in the store, find his favorite items and put them in the cart, learning appropriate social skills….
After High School
Unfortunately now that Aaron is out of school, he has lost most of those skills because adult service staff refuse to take him to the store or don’t have the knowledge or support they need. Here is a story about Aaron’s home (click here). It is not the fault of the staff. Some of them are very loving and do a great job.
So I take him every weekend when he is home with us. Here is a story of a recent shopping trip (click here).
Aaron and I are a team and we have worked out our own system. We only shop for about 10 items and Aaron puts the items in the cart. Sometimes Aaron will grab something off the shelf and if it is anywhere close to something he might want, I’ll let him buy it. ie. if it is a bag of cookies or cereal –he can keep it. If it is a box of denture tablets probably I’ll tell him what it is and put it back.
Choices: Quality of Life and “If Only”
If I had the opportunity to change things in Aaron’s life, it would be that adult services used a functional curriculum and adult residential services gave Aaron and others with autism and severe disabilities the opportunities to practice their skills. There is no question Aaron would not currently be LOSING these skills. There is no question these skills would enhance Aaron’s self-esteem and quality of life.
The reason I could insist on these skills being taught and used when Aaron was school age was because of the federal mandate in IDEA. The Individual with Disabilities Education Act said that parents were part of the IEP team and the parents had due process if they disagreed with the school personel. There is no such mandate for Adult Services, no due process for parents and/or guardians. Plus, in Adult Services the staff does not have to be trained or have any teaching license.
As my friend Deb used to say, “When I am made Queen of the Universe” I will declare it. Until then, I’ll take Aaron every weekend and give him as many functional experiences I can.
And of course, I’ll dream of the day I am Queen of the Universe. *smile*
What ifs? Comments?
Any stories about your child’s school experiences preparing them for the future? Any luck with using those skills in their adult life?
Anyone else want to be “Queen of the Universe”?
Keep Climbing: Onward and Upward
All my best,
In my class, “Introduction to Exceptionalities,” we read an article by Paul Longmore about the social construction of disabilities. The point being that the traditional “medical paradigm” points the disability finger at the person– they are defective and need to be fixed. The new paradigm of “social construction” puts the focus on the culture/society as the ones who need the fixing.
We are the culture, we are the society. And, through the courts, the legislature and individual everyday advocacy we help move society toward inclusion or back toward segregation and the medical paradigm.
Paul, like Ed Roberts, also had polio as a child. Our class watched a video on YouTube where Paul praised Ed Roberts. It reminded me of this post I wrote on the first Ed Roberts Day in California and challenged me to be courageous and follow the examples of both Ed and Paul.
And for what it’s worth, not one student in either of my classes had ever heard of Jerry Lewis. I thought that was a hoot!
Ed Roberts | “Be Extraordinary!”
In the United States we celebrate the birthdays of great civil rights leaders. Two of them are 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.
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)
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 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.
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.”
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.
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,
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.
The Minnesota Governor’s Council on Developmental Disabilities (MN DD Council) does remarkable work. On this blog, I often reference the Parallels in Time (history of people with disabilities) and their Partners in Policymaking Program.
This week MNDDC announced a new FREE app called “Telling Your Story.” Already it has being downloaded around the globe.
EVERYONE has a story.
EVERYONE wants to solve their problems.
EVERYONE wants to be heard.
BUT, SOME People need extra support, skills and confidence to tell others what they want and need.
“Telling Your Story” is for Everyone
Everyone knows personal stories are the most powerful way to influence policymakers and legistlaters. Stories make the rules, regulations and policies become real.
The new “Telling Your Story” app for IPads is an organizational tool to make it easier to tell those stories.
It was created to help adults with disabilities be an active part of the democratic process and find their voice, their confidence and then–their Policymaker.
The “Telling Your Story” App is easy to use and is written for self-advocates–but mom, dad, brothers, sisters, grandparents and allies can use the same template.
The simple format helps advocates compose and practice the personal story they’ll present to elected public officials or other policymakers at all levels of government.
Some of the self-advocates learned to use this app in the Partners in Policymaking Program.
The app guides users through the steps:
–identifying the specific issue
–presenting a compelling personal story in text
–creating an audio recording to practice and rehearse their story
–selecting a photo they may wish to include
Budget Cuts| It’s Personal
Here is an example of one self-advocate’s compelling story using the new app. She is explaining how a recent budget cut affects her life and will cost the state more in the long run.
This is MY STORY:
My name is Thea Graham. I live in your district. I have been waiting all year to come to the Capitol to meet with you. I want to tell you a little about myself.
Currently, I live with my mother. She is very good to me and I love her a lot. I do know that I will not always be able to live with my mom. We have been looking at different residential support options to see what would be the best match.
I know when I move out, I will need staff to support me in using my “wise mind” since I can get upset. Staff will also need to help me with making sure that I look nice since this is very important to me. They will also need to help me drive to the doctor and help me understand what the doctor is saying about my health needs. My mom does all of this for me now.
I receive services at Merrick, Inc., a day program in Vadnais Heights. It is here that I have learned to use my “wise mind” more and more. Before I would swear, yell, and hit people when I got mad—now I use my “wise mind”. This means that I “stop, calm down, think, and come up with another solution that will help resolve the situation”. I do the following jobs at Merrick: pick up plastic recycling at the Maplewood Mall, package medical supplies, take Styrofoam from Culligen caps, and shred pull tabs. I love to make money and work like everyone else does. My job coach Kathy and “Christian” support at my job and they tell me I am doing a good job not only with jobs but how I handle things that come my way. Another thing that I like about Merrick is that I have learned to speak up for myself—doing so assertively not aggressively. Above is a picture of me running for office at a Wednesday morning self-advocacy group meeting. One of my role models is Rosa Parks and the difference she made on the lives of others. On Martin Luther King Day, I have been Rosa Parks showing her role in the bus boycott play. It makes me feel proud to be “Rosa Parks”.
I feel that I have come a long way since coming to Merrick over 13 years ago. However, my CSSA funding for Merrick was significantly cut as of January 1st.
Instead of receiving services for 5 days per week, I only have funding for 2 days. This is a huge burden on my elderly mother who now is taking care of me the 3 days I am not able to attend Merrick, Inc. My mother is not in good health and I am worried about her.
If I am sitting at home alone, I am not making money. I am not at my job where I am relied on to do my work. I am not continuing to build on my skills to cope with being frustrated and angry.
Please hear my story and know that I can’t sit at home. If I end up in crisis, it would cost the state a whole lot more than it would be maintaining my day program services. It is the proactive thing to do—it is the right thing to do.
Download Free App for IPad Here
How can Professionals Use this App?
Many children and adults with disabilities and their families are going to need technical and emotional support for using this app.
Some will not have an IPad available. Some will need coaching or help in transcribing their words onto paper. Some will need encouragement to overcome fears and answer questions.
Transition and High School Teachers:
There could be all kinds of uses for this app. especially in a Problems of Democracy class or in any advocacy or problem solving situation. I would think the format could be adapted for completing many general education projects and assignments. This could also be part of Transition or Speech Language Communication session (social stories?). Learning to use this technology and format would make an excellent IEP/ITP goal.
University students in Introductory to Special Education or Geriatrics, Disability Studies, social work, legal or medical professions could use this app to interview and help support a person who struggles in Making Your Case and get their thoughts organized. This app could create cooperative learning and inclusion opportunities.
This would also be a great project for a Special Olympics Buddies, SCEC or Service Learning.
There could be research potential for all majors. Does this app empower and support vulnerable people? Does this make a difference?….
This is a gold-mine for empowerment, self-determination, voting, citizenship and lessons on democracy. Veterans and senior citizen groups might also be interested in grants or projects for their own members.
Direct Care Workers:
I can see this being used at places of employment and leisure/recreation to help people tell their wants, needs, likes and dislikes and get a better quality of life.
What do you think?
Will this app “Telling Your Story” help children and adults with disabilities tell their own stories? Would this app make it easier for someone you care about? Do you think it is important that policymakers like school board members, county, state and national legislators hear from the people in their own voices? Tell me, will you download this app and use it?
Keep Climbing: Onward and Upward
All my best,
9999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999 April, 2012 is Autism Awareness Month
Is Autism just the Disability du Jour?
April 2 is World Autism Awareness Day and in the US, the month of April is “Autism Awareness Month.”
Autism and the public service announcements are everywhere on TV:
• 1 in 88 children is now diagnosed with ASD.
• Early Childhood intervention programs help.
• People with autism can be smart.
• A child with autism can happen in any family.
• Many celebrities have children with autism.
• Shows as diverse as Desperate Housewives now have storylines about people with autism.
This is all good, right?
Gone are the days when parents were told their children were withdrawn because they were poor parents and “refrigerator mothers.”
Gone are the days when, with my son Aaron, we were told, “The chances of having a child with autism were 1 in 10,000.”
Gone are the days when we were told Aaron would always be in the “idiot range of mental retardation.”
Gone are the days when anyone who was different was sent to the “state hospital or institution” to make the community safer.
Gone are the days when people with intellectual disabilities were given “radiation” in their oatmeal because they weren‘t really human and were only useful for human experiments.
Gone are the days when, there was no mandate for early intervention programs.
Gone are the days when, we segregated people with autism into separate classes, schools and institutions away from their brothers, sisters, neighbors and community…. But wait!
Gone are the days when no one knew the best educational practices and the children spent hours doing meaningless tasks focusing on “curing” the child. But wait!
As the “autism awareness” campaigns seem to focus on using fear tactics to raise more money and get more segregated “autism-only” programs, I have to wonder if this really is a good idea.
God help us if the current trends toward “autism only” programs undermine everything we have fought for and learned in the last 40 years.
Some of the things we have learned are:
All people are human and have dreams, feelings, and hopes for the future.
All people have gifts and strengths.
All people have personalities and can love.
All people can learn.
All people benefit from early childhood programs.
All people benefit from differentiated instruction and universal
All people need support and to learn to be interdependent on others.
All people have the right to life, liberty and the pursuit of happiness.
All people can communicate and have important things to say.
Behaviors equal communication.
People with autism and other labels can be contributing members of society.
People with the label of autism, are not much different than the label of cerebral palsy, spina bifida, ADHD, cancer… or people who are poor, elderly, sick… er, “normal.”
The real way for the general population to understand and have an “awareness” of people who are different than they are, is NOT just a television campaign or a designated month.
The best way is for everyone to have first hand experiences:
Do you know that person’s name?
Do you see them in the grocery store?
Do you share time with them at Church?
Do your children go to school with them, play on their sport’s team?
Are they invited to your house, to birthday parties?
Do you see them working in real jobs, doing volunteer work, sharing their talents?
Do you enjoy being with them?
Do you allow them to grow up and become adults?
How can we teach self-determination and better communication?
SHOULD NOTS and SHOULDS
Autism Day, Autism Month, Autism Awareness SHOULD NOT be about spreading fear or all about a “Diagnosis.”
It SHOULD be about the difference between having a disability and having a handicap?click here
Autism Awareness SHOULD be about more research, certainly. But, the research should be to ask questions, NOT to provide answers—in 2012 we don’t know enough to have answers.
Did you know that Howard Gardner studied people with autism when he came up with the idea of “multiple intelligences”?
Did you know Vygotsky examined people with severe communication problems when he developed his communication ideas on “scaffolding”?
Autism Awareness SHOULD NOT be about raising more money for those parents, professionals, for-profit and non-profit groups that are on the “Autism: disability du jour” bandwagon. They are no better than speculators benefitting from a war.
Autism Awareness SHOULD NOT be about making more segregated autism-only day programs, farms, residential communities, schools, classrooms, soccer leagues and summer camps.
Who would ever think putting a group of people with communication issues together would be a good idea? What they need most is interactions with others with strong communication skills.
Autism Awareness SHOULD BE about noticing and appreciating ALL people who are part of our human community.
It SHOULD NOT be about charity, pity and sympathy but rather about giving ALL people the freedom to grow up and be the best person they can be—just as they are: able to make their own decisions; be treated as adults; made mistakes; and, loved because of who they are.
Autism Awareness SHOULD be about the concepts of “normalization” and “inclusion.” It SHOULD be about looking at people in the normal lifespan, normal opportunities. Not about fixing them with lots of therapies and aversive methods of behavior control.
Certainly, I agree there is a desperate need for help for parents of adults to be able to find resources for their children.
Certainly, I have written of what a “Dream Plan for Aaron” would look like. And that includes Awareness–But much more.
Is Diversity Beautiful?
People with autism have taught us much about love, interdependence, talents and courage.
Can you try to get to know a person individually? Can you listen to them? Can you help them be a bigger part of your life?
If so, then April can be a month of great hope.
The earth’s bounty blesses us with many different kind signs of spring. The flowering magnolias, dogwoods, apple and pear trees each add color and diversity to our world. The tulips, daffodils, crocuses each speak of the beauty of variety and remind us the earth is being reborn. Would we only want one kind of tree blossom or flower? Should we identify, diagnose and separate the trees and flowers and only celebrate the most durable or productive? Or is their beauty even in the most vulnerable blossom?
Can we appreciate and value a great diversity in nature? In people?
Maybe the most beautiful flower in the world, is really the beauty in a person.
I’m hoping you will share your comments and thoughts about people with autism? What are you doing this month to celebrate diversity in ALL people?
Keep Climbing: Onward and Upward
All my Best,