Posts Tagged ‘interdependence’

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Gone are the days when parents were told their children were withdrawn because they were poor parents and “refrigerator mothers.”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
design.

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 have written many times about how Aaron and others need more support and people who are trained to work with them.

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?

Challenge

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.

Comments

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,

Mary

photo credit: aslinth

This is the 3rd in a series of cases of “What would you do?”

The Case of the Shoes on the Wrong Feet

The Case of the Lourdes Holy Water

What would you do? The case of trash vs. treasure

We usually pick up Aaron, our 36 year old son with the label of autism, every Saturday night and keep him until late Sunday night. We enjoy being with Aaron and this gives the residential staff a break.

Annie, our head staff person, has worked with us for over 8 years. My husband and I always enjoy seeing her and not only sharing Aaron stories, but hearing how her life is going. We’ve developed a close relationship over the years and I count her as a friend.

We’ve been trying to get rid of some old exercise equipment Aaron no longer used, so when Annie started out the conversation with, “The junk man came…” I thought I knew where the conversation was going and was in the process of thanking her until she added,

“The junk man stopped at the house, so I gave him the boxes in the garage.”

“Which boxes are you talking about?”

I asked her if she went through the boxes first. She just said, “They were the boxes in the middle of the garage.” And seemed genuinely surprised I would be concerned.

When I reminded her we had brought some of Aaron’s things from his closet at home to store in the garage, she simply said, she forgot.
My husband tried to lighten up the conversation, but I was stunned.

And actually, a week later, still am.

Whose house is it?

My husband and I have been trying to sell our house. The realtor and home stagers suggested we take down all personal family pictures and move anything we weren’t using into storage.

Now, Aaron had lots of storage space in his garage. I certainly wouldn’t put our stuff in there, but it seemed reasonable to store boxes of Aaron’s things from his room at home.

Personal Items:

I always like to surround Aaron with pictures on the walls in his room because 1) he likes to look at them, 2) they remind him of the people who love him, 3) I want staff/visitors to know something of the people in Aaron’s life, and his personal history.

Yep, the picture collages fit just perfectly in some old boxes and suitcases. I padded them with blankets, a quilt from Aaron’s grandma, and other clothes.

Also in the boxes were Aaron’s little treasures from his life. For instance, there were some music globes that Aaron will play with from time to time and each time he took horseback riding; they gave him a horseshoe the last class. Now, prospective house buyers don’t need to see 12 horseshoes in various colors with ribbons. But, they represented happy memories and Aaron’s achievements.

Also over the years, Aaron had quite a collection of wooden puzzles. We don’t get them out very often because they aren’t age appropriate, but I thought they would make a great present to Aaron’s niece when she turns three in another year.

Also, there was a box of used encyclopedias. Aaron loves to look at these books with pictures, and it is so hard to find them, I buy them from used book stores or yard sales whenever I see them.

And, who knows what else was on the “pile of boxes in the middle of the garage?”

So, what would you do?

The boxes and old suitcases contained stuff that belonged to Aaron. Not mine, not Annie’s, not belonging to the “house.”

The boxes were long gone, the damage was done.

It’s not like they were the family jewels. I bet the Junk Man will only make a couple dollars. They were some used books, puzzles, and old horseshoes for Pete’s sake.

And, since we don’t REALLY know what was in the boxes, maybe some of these “treasures” are in the million other boxes in our other storage units. Maybe some of these things will turn up.

So, what’s the big fuss?

In the comments please share your thoughts and ask your social networks of Twitter, Facebook, etc. if they have any answers.

Comments

Remember there are no “right or wrong” answers.

Please share your thoughts. What would you say to Aaron? To Annie? To other residential staff persons? To Aaron’s case worker? To the administration of the company providing residential services? To anyone else?

What attitudes and messages does this convey for the individual with a disability, the family and/or the culture?

How do you resolve this? How many times do you forgive these mistakes?

As a parent, am I overreacting? What should I have done differently?

As a parent, how do you choose your battles for advocacy? After all, these people take care of your child every day, and Annie has been with Aaron for over 8 years.

Keep Climbing: Onward and Upward,

All my best,

Mary

Related Articles (real estate, home stagers…):

Turning it over to the Real Estate Professionals and all Professionals

Memory Rocks| Not being objective

The Host vs. The Home Stagers

The Avalanche and an Aaron story

photo credit: ヘザー heza

Many people have a hard time understanding the concepts of independence vs. interdependence, inclusion, multiple intelligences and cooperative learning. I thought a revision of The Animal School by George Reavis.*

THE ANIMAL SCHOOL

Once upon a time the animals got together and decided to start a school.

The parents and teachers wanted to make everything FAIR, so they decided ALL the animals would take ALL the subjects. No exceptions.

The curriculum consisted of classes in swimming, running, flying and climbing. Each student would need a grade of C to pass. There would be a competition to see who could get the best grades.

DUCK

Doug the duck was excellent in swimming, in fact, better than his instructor. But Doug made only passing grades in flying and was getting Fs in running and climbing.

At a team meeting, it was decided he needed to drop swimming and take remedial classes to practice running.

This continued until Doug the duck’s webbed feet were badly worn and he was only average in swimming.

But average, or C, was acceptable in school, so nobody worried about that—except Doug and his family.

RABBIT

Rene the Rabbit started at the top of her class in running. But she soon had a nervous breakdown because she was failing in climbing and the others made fun of her in flying and swimming classes. She passed the standardized tests but the last day of class she buried her books and said she would drop out.

SQUIRREL

Sam the Squirrel was excellent in running and climbing. He also had high marks in flying until the teacher read a research study that said everything should be taught from the ground-up, not the tree-top down.

EAGLE

Edward the eagle was the problem child. He bit the other animals in running class. He perseverated on flying. In the climbing class he insisted on using his own way to get to the top of the tree. After several discipline meetings, it was decided his diving into the river for fish would count as swimming credit. He was considered a loner with no friends. “He just keeps flying off,” the teachers complained and suggested he be put in special education.

CHIPMUNKS

The chipmunks were excluded from school because they could not pass the prerequisite swimming tests. They protested and demanded digging and burrowing be added to the curriculum. This caused hot debate among the parents and students. The rabbits and squirrels thought digging and burrowing should replace swimming. The ducks thought there should be better discipline and a subject on following the leader.

Conclusion:

Even though he got a D in flying, one frog won the student competition and was valedictorian. All the students and their families were unhappy.

Further, the chipmunks boycotted school board meetings and joined the groundhogs and snakes to start a charter school.

Does this fable have a moral?

photo credit: shoothead

AN INCLUSIVE Community-based SCHOOL

Once upon a time the animals got together and decided to start a school at the pond.

The parents and teachers wanted to make everything FAIR, so they decided ALL the animals would have Individualized Education Plans with Curriculum goals and objectives.

After all, they thought it is only FAIR to consider each student’s unique and individual differences.

The superintendent announced, “We all have multiple ways of learning and our common survival depends on us all learning to live interdependently in a community. Lessons need to be differentiated according to each student’s gifts and talents.”

The parents agreed that if the purpose of school is to learn the skills required AFTER graduation, then the students needed “Survival 101.”

The teaching methods used would be a functional activity-based project which stressed cooperation and problem solving. “Safety at the pond,” was the thematic unit.

There would be individual goals and objectives and each student would work hard, improve on the skills they have and contribute their talents and strengths to the project. The stress would be on cooperation and interdependence, rather than competition and independence.

DUCK

Doug the duck was excellent in swimming, in fact, better than his instructor. Duck was also good at getting animals to follow in line.
At a team meeting, it was decided he would be the project director and supervise all water activities. Doug the duck was excited to be given leadership activities. He improved his dive, his ability to swim across the lake and his life-saving water safety skills.

RABBIT

Rene the Rabbit was a great runner and jumper. Since she was close to the ground, she was in charge of everything on the earth’s surface. She learned to identify animal tracks, and was to alert squirrel if needed. Because Rene was worried she wouldn’t be able to do her best job, Eagle offered to mentor her.

SQUIRREL

Sam the Squirrel was excellent in running and climbing. He volunteered to be the lookout and guardian of the trees and wildlife. If there was danger, he would issue the alarm and run messages. He would also be the time keeper at all meetings.

EAGLE

Edward the eagle was excited he could fly. Doug the duck asked him to survey the pond from the air. He wanted Edward to use his “eagle eyes” to scout for trouble, trespassers and danger and any animals in trouble.

CHIPMUNKS

The chipmunks, snakes and groundhogs were welcomed in the school. They became a part of the community. They gave digging and burrowing tips to squirrel and rabbit. When a fallen tree threatened to block the water flow, they helped dig a channel.

Conclusion:

In the course of the year, Doug the duck saved squirrel when he almost drowned. Eagle saved Duck when he got caught in the ice and almost froze. Rene got enough confidence that she wants to be the project director next time. Sam raised the alarm when a group of Girl Scouts came camping. Because they all cooperated and learned together, their pond community was a happy and safe place and each animal was respected and valued for their contribution.

Instead of a standardized test or grades, they all survived, learned new skills, made new friends and could celebrate the true nature of community: interdependence and inclusion.

Does this fable have a moral?

Keep Climbing: Onward and Upward

All my best,
Mary

Please add your comments:

Do you know any Dougs, Renes, Sams or Edwards?

Do you know any students who are excluded and asked to go elsewhere? Are the students treated like individuals? Is the curriculum differentiated? Does everyone feel happy, safe and like valuable members of the community? Are students encouraged to build on their strengths and talents or does everyone have to learn the same things in the same ways? Are the students learning skills that will help them in Survival 101 after graduation?

Related Posts

What is Inclusion?

A New Year of Learning

Test Questions| Segregation or Inclusion

*Like my husband, George Reavis taught in Cincinnati Public Schools. The original The Animal School was published around 1940 in The Public School Bulletin long before inclusion was even a dream–or was it?

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

All my best,

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?

Aaron’s a Dude: The Dignity of Risk

Aaron just spent 3 days on a Dude Ranch in Michigan.

Before the Dude Ranch closes for the winter, buses of adults with all kinds of disability labels arrive and sleep in bunk houses, eat in mess halls, go boating, ride horses and sing songs around the campfire. For many of these adults—this is the highlight of the year.

The ranch’s owner is friends with the owner of the residential company which provides Aaron’s supports. (This is a great example of Bronfenbrenner’s system’s theory—circle of friends, using your contacts…click here).

Aaron is assigned a staff counselor one-on-one, but everyone pitches in to make sure everyone is safe and has a good time. Always being safe and having a good time sometimes contradict each other. Bob Perske used to talk about, “The Dignity of Risk” and as parents this is a complex and difficult balancing act.

This year we were lucky because one of Aaron’s regular staff went to camp. This was nice because she has worked with Aaron for 6 months and knows what Aaron likes and doesn’t like. So that helped mom’s anxiety and I would think made a big difference to Aaron.

This is about Aaron’s fifth dude experience and each time it’s a worry for me and Aaron’s dad. It is hard to get good feedback on what Aaron does and doesn’t do. I wish he could talk and tell us but I figure it is a change of pace, he likes to ride on the bus, sing songs. Especially, he likes to go horseback riding.

When Aaron was growing up, he took horseback lessons for about 10 years. He only stopped because he reached the 150 pound weight limit. When Aaron sits atop a horse, he looks like Prince Charles: head high, back straight, sometimes he even points his toes. I think he and the horses communicate in their own cosmic language. Sue Radabaugh, Bobbi Theis and the physical therapist at Cincinnati Riding for the Handicapped gave Aaron and each rider a lucky horseshoe at the end of each series of lessons.

We learned horseshoes should always be positioned so the luck stays inside the horseshoe and doesn’t fall out. Aaron still has the horseshoes. God knows we don’t want to have our luck fall out.

Each year, I try and give Aaron “the dignity of risk” and not worry about the million of things that can go wrong at camp. I don’t like to think of myself as one of those “over-protective” or “hovering” parents. Some years have gone better than others, but each year we hope and pray our luck holds.

It is just difficult having a person like Aaron who is so vulnerable, when we don’t really know how the staff will act in this very different environment. For instance, Aaron has red hair, freckles, and burns in about 15 minutes in the sun. His caregiver is from Jamaica and has never had a sunburn in her life. I send sunscreen, I give instructions, but each year we ask, “Will Aaron come home with a sunburn?” In the post about deciding to go to the family reunion (click here) I could actually do the ecological assessment and control the environment. But the Dude Ranch is too far away. I had to put the control in the staff’s hands. And we’ve had some rocky experiences with some staff.

We did find out that Aaron went right up to the horses and wanted to ride, he went out on the lake in a boat four times, and he passed out the light bracelets for the barn dance the last night. The little radio we sent for the bus ride worked well, and actually came back with Aaron. Only one toileting accident. So all is well for another year. Hopefully we will see some pictures. And hopefully we will be even better prepared for next year.

Maybe I should hammer some horseshoes (with the luck inside) up on our front door. Whew! made it another year.