photo credit: Envios

Ever wonder who puts all those flags on the graves of veterans?

MEMORIAL DAY Parades

Memorial Day is a celebration across communities in America which helps us remember our basic values and the soldiers who fought and died for them. Usually, it also includes a parade, one of my favorite parts of the holiday.

Several years ago my family sat in lawn chairs in our local cemetary watching the parade of Little League teams, high school marching bands, veterans in uniforms of many wars, and politicians in their red, white and blue ties.

The cemetery was beautiful. The lawns were like carpet. American flags marked each tombstone. The flowers colored the grounds with reds, pinks, purples and whites. Everyone was feeling damn patriotic.

Everyone except my uncle John. He turned to me and said, “I wasn’t always handicapped.”

I raised my eyebrows and wondered where this came from. Uncle John was never a happy person, but since he had a stroke, he’d become a weary soul. We’d hoped this celebration would lift his spirits.

After all, who doesn’t like a parade?

Uncle John explained. “You know, I was an electrician. I was important, I contributed, I worked in a great hotel for 30 years. Now I just sit here and watch life go by. I’m handicapped and useless.”

Not exactly cheerful parade conversation.

I couldn’t resist. “Uncle John, having a handicap isn’t the end of the world. Can you enjoy the parade? Look at those little kids jumping up and down on their decorated wagons.”

“You just don’t understand,” he said. “I’m not like him.”

And he pointed to my son Aaron, his nephew who has the label of autism.

Some Battles Can’t be Won

I felt I needed to say something, but I couldn’t find any words. So in silence, Uncle John, me and Aaron sat side-by-side, almost touching, yet thousands of miles away from each other.

What Attitudes and Freedoms do we Celebrate?

Some of the veterans in the parade were old with worn faces and bodies. Did our society value them?

Some soldiers were younger than Aaron… and their youth was shattered in the deserts and mountains of strange lands.

Some veterans carried labels of “handicapped and disability.”

And as the crowd cheered and waved, I wondered if these brave men and women would ever be truly accepted into our society.

Would others like uncle John say they were “useless”? Would they only see the handicap?

Would they consider these wounded warriors better than people born disabled, because the soldiers were once whole and then “damaged” fighting for our country?

During the ceremony, a soldier in a wheelchair got some sort of award, and the crowd clapped. I wondered if the community would further support him as he integrated back into society, or was his token wall plaque on Memorial Day the end?

Would people segregate, discriminate and ignore him the rest of the year?

Would he get the support he needed to live, work and become part of the community?

Disabled and Yet-to-be Disabled

I often wonder if everyone understand there are only two groups of people in this world–the disabled, and the yet-to-be-disabled? If we live long enough, each of us will have a disability.

It’s something to think about.

I asked uncle John if he noticed how the cemetery grounds looked. I told him Aaron worked at this cemetery. He and the landscaping crew had disabilities.

And with support, they weren’t handicapped and “useless.”

In fact, they were the ones who made the grounds look so beautiful.

Uncle John died a couple of months later–old, bitter and handicapped. He never understood that people with disabilities could do all sorts of things.

He saw only what they couldn’t do. He focused only of what he couldn’t do.

And he’d missed the joy, pride and purpose of the Memorial Day celebration – just like he missed the joy of Aaron and the joys in his own life.

This Memorial Day, I think Aaron and I will wave a couple of flags in celebration of America… both of us competent, contributing members of our community.

Keep Climbing: Onward and Upward
All my best,

Mary

Comments: Come on, I know you want to share some memory of your own Memorial Day Parade, family reunion, attitudes about disabilities and “Handicapped.” You all have lots of ideas, let us know what you are thinking.

Related Stories:

Perske talks about people with disabilities and WW2.

Aimee Mullins and Survival of the Fittest

What makes you special? A Soldier story

Do the words disability and handicapped mean the same thing?

My Superstars

Special Education Inclusion

Dr. Annie Abram interviewed me about Special Education Inclusion on her weekly blog talk radio program: “Ask Dr. Annie Abram.”

Dr. Abram talks about “Parenting Across Generations” and has been doing several topics on autism.

Check it out. Tell me what you think in the comments section. It really has been a journey for Aaron–a person with a disability, for me–the parent of an adult with a disability, and for our family. And, the choices and decisions we made when Aaron was young definitely influence our choices and decisions now that he is an adult. In my heart I know we took the road less travelled and it demonstrated to the world that inclusion is a civil right–and Aaron is a full citizen.

Inclusive Education
Expecting Academic Achievement in General Education Curriculum

April 25, 2013
2-3:30 p.m. ET

This interactive training session provides teachers with a structured time to think and plan to enhance their students’ participation in the general education curriculum. Many teams have become outstanding supporters of inclusive education. However, what are the students’ goals in that setting? How much involvement do they have with the general education curriculum? What are the goals for the student’s academic achievement? Have we fully considered all the ways the student can attain access to and demonstrate an understanding of the general education curriculum?
Presented by Stacey Skoning, University of Wisconsin Oshkosh, and Denise Clark, University of Wisconsin Oshkosh.

TASH Members $50 (Individual) $80 (Group)
Non Members $70 (Individual) $100 (Group)

This is an inexpensive way to get the latest information for an inservice or parent group.

Check out TASH for more information:

• Thriving in Transitions: Self-Directed Living, It’s Never Too Late! (Community Living)
Thursday, May 9 @ 1 p.m. ET
• Building and Sustaining our Communities through Time Bank Exchange (Community Living)
Thursday, May 16 @ 2 p.m. ET
• An Overview of Person Centered Planning: The State of the Art (Community Living)
Thursday, May 30 @ 2 p.m. ET

———————————————————–

Free Ideas for Inclusive Classrooms

If you want inclusive ideas for your child or your classroom, Paula Kluth is the best. Sign up for her blog. Paula Kluth

As always, your thoughts matter.

Keep Climbing: Onward and Upward
All my best,

Mary

Other Blog Radio Interviews:

When Schools Say NO to Inclusion

Successful Inclusion

Our Family 1980

Aaron at Piano 2011

April is Autism Awareness Month. For those who are new to our community, I thought I would reprint this post because it talks about important issues. I hope you will feel free to share your thoughts in the comments.

Can I love Aaron and hate autism?

If I say, “I love my child, but hate cancer or heart disease…” many people would say that is okay.

If I say, “I love my son, Aaron. I hate autism.” some people say that is NOT okay.

So, call me a villain, ignorant, hypocrite, politically incorrect, or whatever–but I refuse to celebrate autism–I refuse to give autism that power.

I gladly celebrate the diversity of individuals. This diversity makes our world stronger and a more interesting place to live.

I love individuals who have autism, just the way they are.

But–I will not celebrate autism like it is a good thing.

World Autism Awareness Day April 2, 2013

This is the 6th year the United Nations designated April 2 as World Autism Awareness Day. April 2nd next year is already designated too.

Are you going to wear blue? Will blue lights in the Empire State Building, or on the Jesus statue in Rio, or the top of a pyramid in Egypt really mean anything?

Is this like a birthday party? Something we celebrate every year? Send up the blue balloons? Paint your face blue?

I found some of the World Awareness Day press curious: “In fact a world without Autism would be a lesser world.” New Zealand: United Nations declare day to celebrate autism

I think wearing black would send a better message. Autism Awareness should send a plea for action NOW. We need help and resources NOW.

So, the United Nations has established April 2 as World Autism Awareness Day. Great! Let’s talk about autism.

What causes Autism?

Well, no one knows for sure. The “experts” have narrowed the cause down to: environmental, biological, sensory, abuse and neglect, genetic, chemical, neurological, food…and the ever popular–it’s the parent’s fault.

So the short answer is, who knows?

Yesterday someone told me our children have autism because they don’t get enough eggs. Just add that to the list. They might be right.

I recently read a study (2013) that blames the grandparents. They conceived the parents late in life.

Don’t you love scientists–probably funded with the autism awareness fundraising, eh?

Dr. Anne Donnellan spent her career working with families and people with autism. She often says, “The more theories, the more proof that we don’t know.” She also gives her version of circular logic in Disability World.

Circular Logic

Parent: My child keeps flapping their hands.

Doctor: Ah, that is because your child has autism.

Parent: How do you know?

Doctor: Because your child flaps their hands.

Is Autism the Greatest Gift?

Some advocates want you to think autism is the greatest thing ever. They talk about the special abilities of people on the autism spectrum and say it is only because of autism they have these talents.

Hummmm. Is that so?

Sure Temple Grandin, with a glance, can tell how many nails are needed to build a livestock yard–but is that only possible because of her autism?

Rainman could count the number of toothpicks on the floor. Is it possible there is someone else in the history of the world that could also do that?

Are we again caught in circular logic?

Parent: My child can count the number of nails or toothpicks.

Doctor: Ah, that is because your child has autism.

Parent: How do you know?

Doctor: Because your child can count the number of nails or toothpicks.

There are some people with the label of autism who can tell you the day of the week for every calendar year in recorded time.

I can’t. Probably you can’t. But, is it possible there is at least one other human being without the label of autism who can?

The Guiness Record books are full of typical folks who can do all sorts of incredible tasks.

Hurry, quick. Do we now need to give those persons the label of autism?

There are some who are going back to past genius’ and claiming they must have been autistic…Mozart must have had autism. Disney perserverated on those mouse pictures–he must have had autism….

Couldn’t Temple Grandin and Donna Williams just talented people? Isn’t it demeaning to say, “No, the individual Temple Grandin has nothing to do with it, it is only because she has autism.”

Is it possible the statistical increases in the number of people with autism is partly due to our current scientific paradigm of labeling and sorting people? And some people promoting “autistic envy”? The new figures are 1-50. One child in every fifty–and all we are doing is having Autism Awareness Day at the Philadelphia Zoo?

What is normal?

Well, turns out we don’t really know that either. Plus, we could say “normal” changes every year in every culture.

Sure we have tests, but anyone who studies IQ or other quantitative or quantitative measures will point out the flaws.

Multiple Intelligences| Howard Gardner

Howard Gardner, studied people with autism who were labeled as autistic savants (actually “idiot savants” was the term used at the time). He was able to identify at least eight different kinds of “gifts or intelligences.” Now, in every school in the world (that uses best practice) his theory of multiple intelligences helps all children learn. Gardner says each of us has all these eight intelligences, some are just more developed than others.

This is one of the side benefits of autism. Without the diagnosis of autism, the scientific community might have had a harder time making this discovery. Science needs large groups.

Could it be we all have gifts and traits of genius, gifts and traits that could be labeled as autistic? Are we all a little autistic? Are none of us “autistic” in the pure definition of wanting to be apart.

Stinkin’ Thinkin’

So, what’s the deal about autism? Can’t we just celebrate individual diversity?

If we really believe autism is a tremendous gift, then it would be logical for each parent to wish their child would have autism. Right?

I once went to a conference for people with Down syndrome. Everyone kept talking about how people with Down syndrome were the happiest people in the world–how glad they were to have their child in their family. They used examples like, “They will always believe in Santa.” “They are pleased when I fix them chocolate milk.”…

Using circular logic:

Parent: I want my child to be happy.

Doctor: Children with Down syndrome are happy.

Parent: Then I want my child to have Down syndrome.

So, if we want our children to be happy maybe we should try to figure out how to add an extra chromosome to every baby’s DNA.

If autism makes us gifted, maybe we should be researching how to make 100% of the population have autism–add autism magic to our babies’ lives.

This kind of thinking is just nuts, yet it is common in each area of disability. Stick around Disability World and you will hear people yearn to have the courage of people with cystic fibrosis and muscular dystrophy, be sexy like people with cerebral palsy….

Okay, I understand some advocates are probably hyperventilating at this point. How dare I talk this way about people with autism and Down syndrome?

The person who gets joy in Santa, or in having chocolate milk is an individual. Each individual person–even if they have a label– is different.

We can love the individual–not the disability.

As family members, friends and as self-advocates, we can value the individual person’s talents, gifts, joys and sorrows. We can see them in the context of their environments–but, we don’t have to give all the power and credit to the label of disability. The individual should get the power and credit. They are the ones who are who they are.

I can love my Aaron–I don’t have to love autism.

I can see Aaron’s gifts and talents–I don’t have to think they are only because he has the label of autism.

Aaron is a loving person who makes kissing noises as I turn out the light. He smiles when I pull on the toes of his socks. He gives me hugs when I walk past him. He is patient as I try to figure out what he wants. He concentrates on his books and loves pictures. He gets excited when I come in a room. I love when he relaxes in his bath. I love when he initiates a song or going to the bathroom. I love when he figures out how to eat the cheese off my sandwich….

Aaron is unique. He adds his own version of diversity to the human family. He is a great son, brother, uncle, friend… just the way he is.

Autism sucks. Aaron doesn’t.

Autism affects each person differently.

In Aaron’s case, Autism means he can’t talk with words. It means he is 38 years old and can’t always tell when he needs to go to the bathroom. It means he has trouble making friends. It means he yells in public restaurants. It means he chews on his clothes and books and the car seats. It means he has motor difficulties and has trouble walking–crossing from the rug to a tile floor. It means he is always afraid of falling and losing his balance. It means he bites his hand to calm himself. It means it takes him a long time to learn things. It means he will forget them if he doesn’t practice them every day. It means he likes music, but not loud noises. It means he likes to be moving (in cars, buses, boats, planes…) It means he likes to swim, but not bend over. It means he can’t tie his shoes or dress himself independently…it means he cannot be left unsupervised even for a minute.

That all sucks.

I wish it was easier for him. I wish it were easier for me to help him.

But all those difficulties don’t mean I don’t love Aaron with every fiber of my being.

Each day for the last 38 years, I work to get Aaron the support he needs to live, work and recreate in his community. To allow him to be the best person he can be–For him to be able to make choices and have opportunities he wants.

There is a difference.

Dream Plans for Aaron Ulrich

I am adding our dream plan for Aaron. You can click on each of them and see I am NOT trying to cure Aaron. I am NOT trying to make him a different person. I love and respect him as the person he is.

I am NOT trying to make him the person I want him to be.

The first one we wrote in 1981 when he was 6 years old. Dream 2: 1989 The next Dream 3: 1998. And, Dream 4: 2010.

Every day Aaron teaches me about courage, love, and tolerance. But he knows he can count on me, my husband, and his brother. He knows Annie, his caregiver will do her best to look out for him. He wants a new housemate, like his former housemate Jack who will be there for him. He knows his grandma and extended family including Ana and his niece love him just the way he is.

And until our dying breaths, we will do our best to make his life happy.

No, I’m not going to inject Aaron with an extra chromosome to make sure he is happy. No, I’m not going to give this thing we call “autism” supernatural powers to dominate his life.

But I will give him opportunities to make choices about his life as best he can–in spite of “autism.”

Yes, I can Love Aaron and Hate Autism.

Autism Awareness Day Marching On

Celebrate each wonderful individual person you meet in this video.

Keep Climbing: Onward and Upward.

Mary

Comments:

Are you sitting there thinking, “how can this mother be an advocate for people with autism?” Do these words make you upset? Do you agree? Do you think “Disability World” thinks different than “The World”? Can we separate the individual from the label?

Related Article:

Here is another article about Autism Awareness Day asking people to do more than just wear blue.

Aaron on exercise bike

Aaron

"Who are you?"

Roommate Needed in Mason, Ohio

Aaron is a great guy who likes other people. He is looking for a roommate.

Aaron is 38 years old. He attended Lakota Schools and is currently in the Goodwill/Easter Seals Day Program in Lebanon.

Aaron likes to go for walks, ride the exercise bike, swim at the community center, go out to eat, listen to music, look at books, baseball cards and get involved in other inclusive activities in the community. He likes to be around other people.

He loves to go on vacations with his family and ride the trolley bus in Gatlinburg. He likes his Sunday visits with his family and playing with his niece. His family only lives a couple miles away.

Aaron doesn’t talk with many words, but he finds ways of telling everyone what he wants. He repeats phrases and is noisy which could bother some people.

The ranch house is in Mason, near a local park. It is wheelchair accessible. The home is owned and maintained by the Housing Resource Group of Resident Home, so this will be a permanent residence. Aaron has lived in a house managed by this non-profit for over 11 years and we feel they do a great job. We hope he can live here for the rest of his life.

Aaron has a level 5 Medicaid Waiver which will help pay for the 24/7 staff. He needs a roommate who is also on a waiver or private pay. We are working with our Warren County Board of Developmental Disabilities.

Anyone who has lived with other people knows the importance of finding a good roommate match. Aaron would like a new friend as well as someone who could be part of his extended family.

We would love for Aaron’s new roommate to be from the Mason community. We would love if another family would want to share all of our lives, so we could be a support to each other.

Aaron currently has staff who are loving and have known him for many years. They are part of our extended family and have hearts big enough to include another person.

If you know of someone who might be interested, please call me at 513-336-8271.

Comments:

It is difficult to describe Aaron. He is loving and wonderful, but a prospective roommate also needs to know Aaron is noisy and that might be an issue for some people with sensitivity to sounds. So, how can I give Aaron respect and dignity and yet be honest.

Aaron had the same roommate for 13 years. He and Jack are good friends and care about each other. Leaving Jack was one of the hardest parts about moving to a new county. Jack was a gentle man who was older than Aaron. They had their own hobbies and interests, but would go into the community together for shopping, large and small group activities and taking walks with their caregivers. Jack and Aaron had their own way of communicating and respected each other. We can only hope we will find someone like Jack, and as you know, everyone is unique. We ask your prayers.

Any suggestions greatly appreciated.

Keep Climbing: Onward and Upward

Mary

One big happy extended family

Home Sweet Home

The house is a little ranch in a quiet neighborhood. Aaron and Jack each have their own room which is decorated with their favorite things. We remodeled the back half of the garage into a room where the staff could sleep and maintain an office. Aaron and Jack need a staff person with them at all times. I’ll talk more about the staff in another post.

The guys have a HUD rent subsidy so they only have to pay one third of their income in rent. The house is owned by a non-profit agency that does the maintenance. Thanks to Aaron’s Uncle Steve, we learned about HUD and were the first people in Ohio to access this source of funds. Some day I’ll tell you all the details about the craziness of applying, it involved five people using speed-dial and having to call between 10:00 AM and 10:30 on a specific day to secure the limited vouchers. It was a group effort, and when we got the application we felt like we had won the lottery. It takes parents and other caregivers a lot of effort to keep all the funding balls in the air, but with some creativity it can work.

Aaron and Jack have lived together for over 11 years. Jack has Down syndrome and is in his 50s and Aaron is 35 and has the label of autism. They get along great. They just seem to know what the other person wants or needs. Jack will pick up stuff if Aaron drops it, and Aaron just seems to know when Jack wants to be alone with his videos. It is pretty remarkable that even without verbal language, they just seem to have an understanding, their own system of communication. They don’t go in each other’s rooms–even if the door is open. They know their own chair and place at the kitchen table and they each have a job around the house. Jack loves to choose and pass out different seasonal placemats (this week’s have watermelons). Aaron’s job is to clear the coffee table in the living room and water the plants.

Aaron’s makes choices

Aaron’s favorite things to do are to listen to music, go swimming, go anywhere–he likes cars, buses, trains, planes… if it moves, Aaron likes it. We bring Aaron to our house every weekend so we can be a part of his life, and to give the staff a break.

Neighborhood Welcome

When Aaron and Jack were first moving into the house, there was a huge lawsuit and neighbors across town were claiming that having people with disabilities would lower property values. Fortunately, Aaron and Jack’s neighbors have been wonderful. We planned a picnic last year for all of the people in Aaron’s day program and the family next door not only came to the party, they brought the potato salad and joined in the games. They have helped clear snow and would help in any emergency. We’ve watched the kids next door grow up and feel blessed to have them in our lives.

Update:

In November it will be two years ago since Aaron moved into a new home so he could live closer to my husband and myself. Aaron got a new residential company and new staff.

Jack stayed and got a new roommate though he did come to visit. When the residential company went bankrupt, his loving staff stayed with him for a while, but then moved on. The company that owned the house decided to sell it. So, Jack lost Aaron, his staff, his house and his security. Is it any surprise Jack’s health has suffered.

Next week, Aaron is going to try and visit Jack. There will always be a place for Jack in our hearts. He is a quiet, gentle man. There is no doubt, he and Aaron shared an important part of their lives. There is no doubt they loved each other and looked out for each other–just like a family.

Currently we are looking for a new roommate for Aaron. Jack lives in another county now, so he can’t join us. We meet a new man next week. Will he be someone who will be friends with Aaron. Can this new person be like Jack.

More later.

Keep Climbing: Onward and Upward
Mary

This is going to be a tough post. I might chicken out and not even publish it. I don’t want it to be a pity party: “You parents go through so much. You are Saints.” God Forbid!

See Aaron playing the key?

I am hoping this message will give other families a chance to take a breath and allow themselves a little slack. For those of you who are professionals, I hope it gives some insight into the choices families make–usually at a cost.

Families make hard choices all the time

All parents of young children, and adults who are caring for their elderly parents experience these same dilemmas. The sandwich generation is a well known problem in our culture and effects most families.

What is different for parents whose children are adults with disabilities? This intense care is usually not discussed or understood. It is not a time-limited situation where your child grows up or your parent dies.

Aaron is 39 years old and as I get older this is a growing issue. We are talking about–well, until my dying breath.

First Sign of Growing Old

I’ve been having lumbar back pain and had to begin a series of injections and other stuff. This is the first major medical issue I’ve ever had, so I have no right to complain. Plus my philosophy is that anytime a Doctor can actually “fix” a situation, I consider it a temporary problem and a medical victory.

BUT the bottom line was that for the first time ever I had to cancel Aaron’s doctor appointment.

I consciously chose my needs over my child’s.

I’ve had pain before, sure. But that has never stopped me, so why was this time different?

What was I thinking?

* There was the 50 mile round-trip drive to Aaron’s Doctor, the only one I trust who takes a medical card…

* Aaron goes every three months and didn’t have any major issues…

* We bring Aaron home with us every Saturday night. Whenever we take Aaron to the Doctor, we keep him both Saturday and Sunday nights and try to schedule on Monday morning…

* Monday mornings are the busiest day for the Doctor so there is always a long wait in a room full of sick people… Aaron is not a good “waiter”…

* I feel bad about the last minute cancellation to Aaron’s doctor, we try to be respectful of his time. If we have to pay the $30. charge, so be it.

* I always bring flowers to the receptionist in the Doctor’s office. She takes a special interest in Aaron and always gives him hugs and makes him smile. (I know, I know, amazing that I would spend energy on flowers for the receptionist–but she is one of the few people who get excited to see Aaron so that makes me happy too)…

* Going to the doctor takes a full morning…

* After the doctor visit we take Aaron out to lunch and then drop him off at his day program….

* Monday is the “community outing” day at the day program–so when they actually do what they say they are going to do (we won’t go there)…that means the group may or may not be in the building when we want to drop Aaron off…

* If the day program group is not there then we have to leave Aaron with the director who just puts Aaron with a book in a separate room and ignores him, a safety worry…

* The day program has Aaron’s noon medication, so the good thing is he will get his noon meds on time…

* The bad thing is I will have to be face-to-face with the director, who is a good person just has no resources. This means I will ask, “How is Aaron doing?” and the director will tell me they strongly think Aaron should be in diapers and have his meds increased… which will lead to… (let’s just say) be stressful for both of us and reinforce my reputation as “EVIL Parent and Day Program Public Enemy Number 1″….

I wrote this all out in stream of consciousness because this site is about climbing every mountain and mountains always have streams– did you like that analogy? But, like most people, I think our conscious run streams of pros and cons with every decision we make.

Second and Third Thoughts:

I accept it, but I am not proud I made the decision to think of myself first. When we took Aaron back to his house on Sunday night and I was hardly able to walk on Monday morning I knew I did the right thing. There is no way I would have been physically able to give Aaron his bath, breakfast, and go through all the steps outlined above.

So Aaron will live, I’ll get better. But how soon will it be that either myself or my husband will have some serious condition where we require medical care and can’t take care of Aaron?

I look at Aaron’s housemate’s parents. They are in their 90s. They have done an admirable job, but age has now made them just as vulnerable as their son. Soon it will be my turn.

Damn! Why is this so hard? Why do I feel Aaron’s quality of life is ONLY in the hands of his family?

We are fortunate to have some good professional people in Aaron’s life. But why do the thousands of dollars being given to the agencies–who are supposed to be providing Aaron care–don’t care?

There is a huge difference between providing “care” and “caring”.

Comments

Okay, getting old is tough for everyone, share what you are thinking. Do you think it is more intense for a family with a child with a disability? Is it harder as the child grows into an adult?

Keep Climbing: Onward and Upward
All my best,
Mary

Related Articles:

http://climbingeverymountain.com/nursing-and-caring-1945-vs-2010/

http://climbingeverymountain.com/the-circles-of-life/

http://climbingeverymountain.com/inclusion-for-moms-sisters-of-the-heart/ BTW: Lori Foster 2013 register now.

Stop the “R” Word

March 6, 2013 is designated “Stop the ‘R’ Word day. If you go to their website they have many ideas for activities and actions. If we each do one thing, we can make a difference for the future of our children. Please share your thoughts and actions in the comments.

David Hinsburger and the “R” word.

David Hinsburger is an award-winning author and advocate for people with disabilities. His article titled: The People who “ARE” the “R” Word is a must read classic for anyone who doesn’t understand what the fuss is all about.

Sticks and Stones and names hurt

My Letter to a Major Blogger

As promised in my post “Definitions of “Retarded”, this is the letter I wrote to a major blogger when he used the words “retarded” and “idiot” in one of his posts. It is edited for this post.

Hi _____,

I have followed your blog ____ for a long time and enjoy your stories, ideas and writing style. However, I have issues with your use of the words: “retarded, idiot, moron and imbecile.”

You have made strong statements about using whatever words you want–even if they offend people and hit their hot buttons.

You can use words like “idiot, moron, imbecile, crip, tard…,” but why?

I agree this is America and defend your right to freedom of speech. I agree people who find these words offensive can just unsubscribe. But… you are a smart and thoughtful person. Why would you want to purposely offend vulnerable people?

I would rather believe you don’t understand how much these words hurt.

Mental Retardation–two words that matter.

My son has the label of “mental retardation” now called an “intellectual disability.” Because of those two words, he was not allowed to go to public school.

Because of those two words we had to spend three years in court, costing thousands of dollars. We, along with other parents, had to prove our children were human and had the right to “life, liberty and the pursuit of happiness.” We had to prove in court that our son would benefit from being around other people and his mere presence on the school grounds would not harm other children. Because of those two words he was not allowed to participate in swimming lessons with the other kids in our neighborhood PUBLIC park. Because of those two words our family has been refused to be served in a restaurant and a Doctor refused to have our son for a patient…need I go on?

But our problems were minor compared to people with the label of intellectual disability in the past.Parallels in Time: A History of People with Disabilities

Just a generation ago, because of those two words, people were treated as animals instead of humans. They were sterilized, given doses of radioactive materials in their oatmeal. They were taken from their families (“for their own good”) and warehoused in inhuman institutions. Some were not given clothes and had to sleep on straw. They were denied even the most basic human rights–all because one psychologist in one situation gave them one test and labeled them those two words.

Most history books have made people with disabilities invisible. So, you probably aren’t aware, but the words: “moron, idiot and imbecile” came straight from the medical manuals of less than 40 years ago.

There are still churches which will not allow people with the label of those two words to marry, some churches do not even allow “those” children to attend their services or receive the sacraments. Many private schools and churches legally still segregate and discriminate against our children with those two words.

There are many normal couples who joyfully want a baby–until they hear those two words, and then immediately abort. There are Baby Doe cases where if the baby has Down syndrome and is assumed to have mental retardation, the family refuses to take the baby home from the hospital and refuses to allow the baby to have food. There are cases of “wrongful birth” where the parents sue the Doctors for allowing their child with “mental retardation” for being born.

In 2012 we can add the case of baby Amelia Riveria who was refused a transplant because she had an intellectual disability. The hospital has recently apologized.

“Mental Retardation, retard, retarded” are not funny words”

In Ohio, the state legislature passed a bill in 2009 to remove the words “Mental Retardation” from state agencies and its documents. This was the work of numerous advocates and thousands of hours of public hearings.

This is a civil rights movement where we are fighting for the right of our children to live, work and recreate in the community. The right to be seen as human beings and citizens of this great country.

Sticks and Stones … and words can hurt.

When a label carries enough stigma that the label alone can cause discrimination–the label is a problem.

The civil rights movement of the 60′s laid the ground work for Sec. 504 of the Rehabilitation Act and the Individuals with Disabilities Education Act…. and our civil rights legislation, The American with Disabilities Act (1990). If you look at the closing statements in Brown vs. Board of Education (1954) you will see the school district’s argument, (paraphrased) “If you let negro children in the public schools, the next thing you know the school will have to educate retarded children and Indians.”

In 2012, our children have the right to go to public schools, and restaurants cannot refuse to serve us, or ask us to leave because they don’t like “the way we look”.

This is NOT ancient history. This is NOT some group of radical parents and advocates who just want people to be politically correct.

Churches, non-public schools and organizations can still discriminate and decide who they allow in their churches but because so many of our children are going to school and living with their families in the communities, there is not the fear that once existed. And the medical professionals have dramatically changed their low expectations and acknowledge the limits of the IQ test and other measures they used to label people.

Sure this came about because of civil rights court cases and federal legislation, but mostly it happened as decent people decided to give people who were different a chance. I know it is unpopular to say that the Federal Government and Laws are important. Many people say there is too much government. I wish there was more protections and enforcement for vulnerable people.

Challenge to Bloggers

My challenge to all bloggers is:

Will you take cheap shots and continue hateful language which hurts people? Or, will you use respectful language and recognize people with intellectual disabilities are people and at least give us all a chance to build a better world.

Words have power. You have power.

Will you use your power to continue to hurt people, or for change?
I know you didn’t mean to hurt anyone, but for those of us (like me) who have children with IQs below 50, children who were labeled “idiots” by our Doctors and medical professionals and who are struggling every day to try and make a better life for our children, the words: “retarded, idiot, moron, imbecile” are downright offensive. So forgive me that I rant today instead of ignoring it.

I know the words are used everywhere and people aren’t particularly trying to hurt people with intellectual disabilities but I would appreciate your consideration.

Thanks. Mary

The blogger I sent this letter to agreed to not use the offensive language only asking that he remain anonymous. I consider that a victory for all of us, and it has made me a loyal fan.

Rosa’s Law

Rosa’s Law was passed and signed by President Obama in 2009 to use People First language in all Federal documents. Love, NOT Labels| Rosa’s Law

I am hoping other bloggers will take up the challenge and use People First language and the words “intellectual disability” in a respectful way.

This is a fresh start. We can do it right this time.

What about you?

Will you take the challenge to remove the “R” word and other hurtful words from your vocabulary?

Will you help educate others who use the words?

Will you learn more about PEOPLE FIRST LANGUAGE?

Talk to me in the comments. Let me know what you are thinking.

Keep Climbing: Onward and Upward.

All the best,

Mary

Related Posts:

“Retarded” Keywords

Remarkable Parents who Never Give Up

Happy Feet, Retarded Teeth and Carnival Goldfish

Retarded| No More

Norm Kunc| What’s Your Credo?

People First Language| Building Community, “Wheelchair Becky” and Smoky Woods

Just need Julie Andrews in the picture:)

Oh Beautiful for spacious skies…

From the moment I was pregnant, my husband Tom dreamed of the day he could retrace his childhood trip out west. He glowed in the memories of mom, dad and kids studying the maps on the kitchen table, packing the lunch meat sandwiches in the cooler, and repeating the rest-stop conspiracy of Dad throwing the baseball high over his boys’ heads so they would chase the ball and use up some of that stored energy. The year our son Aaron was ten and his brother Tommy turned nine, faithful to Ulrich family tradition, we headed west. The main difference between my husband’s family, and ours, was that Aaron has autism.

Preparing for the trip

Aaron didn’t start walking until he was five, and even at ten was not completely independent in the bathroom. So how were we going to follow his needed routines for toileting, understand Aaron’s wants without the use of words or signs, watch his balance issues, and especially, cope with unpredictable behaviors? How were we going to manage twenty-one days of camping, sleeping, eating, and interacting with strangers in strange places? How were we going to survive–much less enjoy–visiting eleven National Parks and Monuments, twelve states, Mexico, and traveling five thousand miles?

Certainly, we were not the first family to attempt a western vacation with a child with complex needs, but we also knew we were not going to be “typical” tourists. Tom and I briefly considered leaving Aaron with a friend or in summer camp, but we decided this dream vacation included our “whole family.” We would make it work.

Adaptations and Accommodations

What could be more All-American?

Using our teaching and parenting skills, we designed adaptations and accommodations for the trip. In previous years we camped in state parks and all shared a big tent. Aaron had a terrible time sleeping on the ground in such close quarters and often our sleeping bags got soaked in rain storms, so for this adventure we decided to buy a pop-up camper. Our pediatrician recommended some medication to help Aaron relax and sleep at night. We planned to follow Aaron’s schedule for meals, breaks, and sleep. We would only visit restaurants at non-peak hours, choose corner tables, avoid long waits, and skip most museums. We installed a child-proof lock on the car door and had a suitcase of games, music and snacks. Tommy and Aaron’s jobs on the trip were to crank up the camper each night and help carry the water buckets–jobs that were successful in our previous trips.

Oh Beautiful for pilgrim feet…

Like the pioneers of old, and Tom’s family a generation earlier, at dawn our family set out from Cincinnati with Tommy’s version of a “Colorado or Bust” sign taped to the windshield, driving not oxen-pulling-a-Prairie-Schooner, but a brown-station-wagon-pulling-a-pop-up-camper. We were confident we could handle any of the challenges we knew would come. We would enjoy our family-time and see the beauty of America. And fortunately, instead of mud and rock trails, we had interstate roads and could travel sixty MPH.
We Americans like to brag about being the melting pot and/or salad bowl of the world, a nation that values brotherhood and diversity.

Even with our best preparation, instead of a three-week vacation, this became a three-week teaching excursion. It seems the human America was not quite ready for us.

At home we were surrounded by people who know us; they saw the beauty in Aaron and our family. With the strangers we met on our journey, we had both negative and positive interactions.

Transformational Experiences, day after day

As if we had a disease, one family packed up their tent and moved it to a site on the other side of the campground, and a pregnant woman crossed the street so she wouldn’t have to pass us.

One evening Aaron was enjoying the loud echoes that he could make in the campground bathhouse, and a young boy ran out screaming, “The Hulk, the Hulk’s in there!”

An elderly man said, “We have one of ‘those’ in our family but he doesn’t travel, he lives in a home.”

“Mom, what’s wrong with that boy? Does he act that way on purpose?” The mother whispered, “SHHH, he’s retarded,” and like we were dangerous, yanked the child’s arm and dragged him away.

“Have you tried the Feingold or gluten-free diet?” or, “I know an allergist in Illinois who can get kids like that to talk.” It seems many people think they have the right to offer advice. I am sure they think they are helping, but do they really think we were so desperate we needed a consultation standing in line at the grocery? We struggle with the question: Can Aaron ever be accepted just the way he is, or does he only have value if he is “fixed” or “cured”?

In Arizona, we were asked to leave a family-style restaurant because, as the manager said, “We don’t serve people like him.” Tom and I were shocked because Aaron was happily eating his pancakes. If he had been noisy, we would have understood, but he was acting as normal as anyone. Sobbing, I hurried Aaron to the car wondering what we were going to do a thousand miles from home. I realized this was the lowest point of the trip and saw a glimpse of the discrimination that has followed individuals of other ethnic and racial groups. The stigma of being asked to leave a restaurant because some anonymous person didn’t like the way my son “looked,” and the management’s open prejudice presented an uncomfortable dark side of America I will never forget.

Oh Beautiful for heroes proved…

Our trip would have been devastating if only bad things happened, but we actually had some very positive experiences.

People would ask with smiles, “Where are you from?”, “Where did he get that red hair?” or “How old is he?” Just ordinary questions, but kind gestures and communication starters.

A parent of a child with Down syndrome commented, “I hope the programs in Ohio are better than in Missouri.”

One young girl smiled at us, “We have special kids in our school. My best friend’s name is Brian, he reminds me of him.”

Several children sought out seats next to Aaron and Tommy on a park swing, maybe just for a closer look, but they made eye contact and tried to make Aaron smile. Several gently pushed Aaron on the playground swings, merry-go-round, and gave him a turn kicking the soccer ball.

Aaron pinched me when we were rocking violently on a small plane sight-seeing ride over the Grand Canyon, the pilot said: “Don’t worry, I’ve had grown men reach over and hold my arm.”

At one roadside park all the visitors collectively held their breath as Aaron climbed the steps up a steep slide. Tommy guided him to the top where after much arm-flapping and nervous hand-biting, Aaron finally let go. As the wind struck his face and he barreled down the slide, Aaron’s expression was one of absolute joy. Everyone in the park clapped and cheered. This was not just a glorious moment for Aaron; this was a glorious moment for every person in the park.

In a swimming pool in Arizona, a life guard got in the water during her break and showed Aaron how to swim on his back.

On a train ride in Silverton, CO a little girl moved into the seat next to Aaron and taught him an adapted version of the game Connect Four.

A waiter in Mexico brought Aaron an extra pack of crackers while we waited for our meal and tried to entertain him by singing Old McDonald in broken English. He even helped cut up Aaron’s food. His empathy and understanding crossed national and language barriers.

Universal Design and Inclusion

In the National Parks we found many examples of universal design: accessible water fountains, paved paths, and self-guided tours enabled us to partially participate in the park activities. Several of the campground managers gave us campsites close to the restrooms. At Carlsbad Caverns, New Mexico there were benches and a bypass for the steep climbs. A small work crew with disabilities in Grand Canyon National Park did yard work, and a waitress at Canyon De Chelly used sign language to take an order from a customer. These inclusive accommodations not only made it easier on us, they actually made us feel welcome.

Survival means Adapting to the Environment

We were ambitious. We flew above the Grand Canyon and went down in the caves of New Mexico. We had a lovely lunch at the Broadmore Hotel with water goblets and doilies, but were asked to leave a family style restaurant. We drove to the top of Pike’s Peak and the whole family climbed the ladders of Mesa Verde’s Cliff Palace. We saw Native Americans adapt and survive their desert environment by seeing the value of every living plant and creature. We tasted jelly and saw sewing needles made from a cactus. We heard wolves howling, and we howled back singing every song we knew around the campfire. We took pictures and made memories that will last a lifetime. And perhaps like the Native Americans who live in the desert, we were learning how to adapt to our environment.

Lessons from the road

We were physically and emotionally exhausted. Many amazing things happened that brought our family closer together. At the same time, though, I feel Tom, Tommy, Aaron and I crossed the line.

We could no longer think of ourselves as a family with one member who happened to have a disability; we were truly a “disabled family.”

I am not trying to be shocking or dramatic. We just had to concede that most of the general public did not seem to have the motivation, information or skills to assimilate us into their version of a “typical family.”

We also learned we had no anonymity; we stood out even in the largest group. Five hundred people came to see the bats fly out of Carlsbad Caverns, but because of Aaron’s shout when the bats emerged; four hundred ninety-nine people were looking at us.

We learned that celebrating the diversity of the landscape of America includes seeing the beauty of the diversity of its people.

Planting Appleseeds

Our experiences reinforced our commitment to the inclusion of people with disabilities to live, work, recreate, and go to school with their neighbors, brothers and sisters. We cherished the positive experiences; the children we met gave us so much hope for the next generation of Americans, and travelers. Like Johnny Appleseed on his trips out west, we tried to drop positive seeds that other pioneer families will nurture and see bear fruit. Perhaps a future Kodak moment for our country will include not only the beautiful American landscapes, but people like Aaron and our family.

Better than “The Buck Stops Here”

One last story: In Missouri, inside the Truman Memorial Museum with its high ceilings and big rooms, Aaron started, “vocalizing.” Oh, how it echoed. The guard came up to us and said either Aaron would have to be quiet or leave. Tom started to go, when another tourist came running from across the room. He looked the guard right in the eye and said, “How dare you speak to them like that. That young man is a citizen of this country and has a right to be here. Harry Truman was a strong supporter of the ordinary person. He, of all people would want them to be here.”

As we pulled the car into our driveway, Tom and I were wondering if it was worth it. Would we ever take another road-trip? But like always, our children showed us the way. As he was running into the house to be the first person in the bathroom, Tommy called over his shoulder, “Next year I want to go to Florida!”

And crown thy good with brotherhood, from sea to shining sea!

Add your voice:

Be sure to leave a comment and let me know about your travel adventures. Is it harder when you are away from home and your typical routine?

Keep Climbing: Onward and Upward

All the best,
Mary

Looking for the Village WiseWoman

When I get depressed, I like to pull out a Nora Robert’s book. Don’t laugh:)

For a couple hours, I let the queen of romance weave a tale about another world where, no matter how impossible the conflict, the heroes and heroines will overcome all odds and there will be a happy ending. If only real life was like that. Sigh.

In Nora’s book, “Once Upon A Rose” the village WiseWoman conjures up a “forgetting spell” which protects a baby girl by making her invisible except to those who will wish her “good will”.

Of course any time magic is used, there needs to be a sacrifice to restore balance to the universe–so in this story the mother dies so the baby can live. Of Course.

In my last post, I talked about Balancing my child’s needs and mine. (Click here)so I’ve been thinking about balance, sacrifice and love.

I’m hoping a WiseWoman will come along and cast a “forgetting spell” on me. I’m saying this because I think “forgetting” is the key to solving so many of our problems. What if we could cast a “forgetting spell” so that Aaron would only be seen by those who wish him well? He would be surrounded by people who care about him.

I always felt “Inclusion” and blending into the normal life of a neighborhood is Aaron’s greatest safety–just as animals are protected by camouflaging themselves into their environment.

Aaron likes books, just like Mom

Success Story 1

Last week early one morning, the van driver from Aaron’s day program and his residential caregiver were having words in the driveway of Aaron’s house. GEESH! After all the community building I try to do with the neighbors GEESH ALMIGHTY–the normal adults (the paid professionals who are caregivers) are practically coming to blows in the driveway. And who do they call to fix it? NOT the two different agencies who are making thousands of dollars on Aaron, no of course not–they call me.

So, I handled it! YEA ME! It took several phone calls and a couple hours work, but starting next week a new van service will be providing transportation. Hopefully it is a win-win situation. Most of all, Aaron won’t have to have an emotional stressful start to his day. And any neighbors who might have noticed the commotion will forget about it and Aaron will go back to being invisible. He will just be a normal guy being picked up. No one will notice or be concerned. If there is ever a situation where Aaron is in trouble, I’m hoping the “forgetting spell” will bring out those who wish Aaron “good will” and they will speak up and protect him.

Success Story 2

Because I was unhappy with some of the things in Aaron’s life and took action, the agency which supports Aaron in his day and residential program have been very upset with me. I was the Wicked Witch, the Mother from Hell, the woman who just kept making trouble, anything but the “WiseWoman.”

Well, about 8:30 this morning, I get a call from the supervisor who previously would hardly even talk to me. He called and said our loving staff person who has been with us for over 8 years had a family emergency. Could I possibly go to Aaron’s house?

In twenty minutes I relieved the staff person and held down the fort until the supervisor could get there. In that time, I took both the guys to the bathroom, plunged the stopped-up toilet, and threw a load of clothes into the dryer. I got the guy’s back-packs and lunch boxes ready and when the supervisor arrived was able to give him directions to Aaron’s program and help them into his car.

I felt really good I could help our staff person, Aaron, his housemate and the company. I also felt good that they called me. It was the “community” the “team” the “extended family” I was always talking about.

What struck me was how the attitude of the supervisor had changed. Of course I can’t speak for him, but I think this was a transformational moment in the way he looked at my role as a mother and as part of the larger ecological support system (see related post).

At one point I almost thought he was going to give me a hug. This was incredible because only a couple days ago, I would have put money on the fact he was purposely trying to “punish” me for challenging his agency and his authority, adding roadblocks to our already difficult and complicated life.

Happy Endings

I wish I could craft a romance writer’s tool and create a nice story arc which would tie up this story in a nice circle. There was an opening conflict, it was resolved, and both parties were changed. But “happy ever afters” are just in fairy tales and romance novels.

And unfortunately Aaron’s story will have another opening conflict tomorrow and tomorrow and tomorrow.

And that is just normal life. It is true of every person’s life, not just people with disabilities and their families. The morning after… always opens a new chapter.

So just having a happy ending for one day is okay.

Our staff person’s family crisis worked out okay. She called and thanked me for being someone she could count on. Which is perfect, we need each other. But the big change is that I don’t think the supervisor will ever again see me as the “Wicked Witch” or “Mother from Hell”.

I’m sure we will have more disagreements. He is the representative of a company which has few resources and lots of responsibility and I am the mother of a 35 year old person with autism and severe disabilities who needs lots of resources and lots of responsible people to care for him.

But today we didn’t need bigger-than-life heroes and heroines who did heroic deeds, we just needed WiseWomen and WiseMen.

And maybe today, I’ve had my own transformational experience. Maybe when I am looking for the village WiseWoman to create magic, I’ve learned that WiseWoman must be me.

Today felt like it had a “satisfying ending” even Nora Roberts would approve. And maybe more days with just plain old “satisfying endings” will lead to that elusive “happy-ever-after” for Aaron and all people with disabilities.

Are you becoming a WiseWoman or WiseMan?

Tell us your story or experience with forgetting, and happy endings.

If you liked this story, sign up in the “Get My Newsletter” box (top left). Also, I would appreciate it if you would use the buttons below to Tweet, send to Facebook or whatever your favorite social media. Thanks for being part of our growing community.

Climbing a Mountain is a Team Effort, each person is important.

All the best,

Mary

Roberts, N. (2001) Once upon a rose: anthology. New York: Penguin Putnam.

Chocolate Covered Strawberries

Mouth watering?

Don’t these chocolate covered strawberries look delicious?

For Valentine’s Day, or any day, what about making chocolate covered treats or gifts for the people you love?

Chocolate Covered Fun for ALL AGES and Abilities

Parents, Special Education Teachers, Directors of Day Programs and Senior Centers: Everyone is looking for activities that are fun, age-appropriate, and allow people with all ability levels to participate.

Taking your favorite snack for a chocolate dip may be the answer.
The costs will vary according to the ingredients, but pretzels and marshmallows are cheap. Of course, if you want to go gourmet, hey, yum.

Partial Participation

photo credit: mbaylor

“Partial Participation is Better than Exclusion from an Activity” (Lou Brown)

Even if the recipe says, “Easy” that doesn’t mean every person can do every part of the activity.

For instance, Aaron, my son with the label of autism, wouldn’t be able to set the timer on the microwave–but he can certainly dip the pretzel in the chocolate sauce and choose the kind of sprinkles for the decoration.

Aaron can’t read the recipe with words, but he could follow the directions with pictures and though he can’t drive to the grocery, he can partially participate by picking out the pretzels and chocolate.

When Aaron was in school and had a speech therapist, one of his goals was identifying pictures of grocery items and finding the item in the grocery aisle. When he had a physical therapist, one of his IEP goals was pushing the grocery cart without hitting anyone in the grocery store. (Not a pretend grocery store in the classroom.) When he had an occupational therapist, one of his goals was to hand the grocery clerk the money to purchase the items and put the money back in his pocket. Aaron successfully learned these skills and practiced them every week in his functional community based program and … every time our family went into the community grocery store.

There are lots of things Aaron can do to partically participate in every activity.

When Aaron is part of the group, when he does purposeful, functional activities, he develops self-esteem, he is a doer. He is not just a passive observer. If he is treated as a baby, or as someone who cannot do anything but watch, then he loses his skills and his self-esteem. The people who think they are being nice and helpful to him, are not–they are actually causing him to lose skills/self-esteem.

This is a functional activity because if Aaron doesn’t go to the grocery to get the supplies someone else will have to do it.

If Aaron is actively involved in the shopping, the decorating, and gives the chocolate covered pretzels as a gift HE MADE–then this activity becomes much more than an easy activity to fill the day. It can become a learning and social enhancing experience. When he gives Grandma a package of pretzels he made, it is a joyful celebration for everyone. You should see his smile

Be Creative: Lots of Ideas

Dip White or Dark Chocolate Ideas:

Dried Fruit (apricots, raisons…)
Fresh Fruit (strawberries, cherries with stems, apples (whole or slices)…)
Pretzel Rods or any size
Marshmallows
Cookies
Graham Crackers
Candy Canes
Rice Krispie Treats

How to Make Chocolate Covered Pretzels:

Activity for All Ages and Abilities

Things You Might Need:

Microwave-safe glass or measuring cups

Cooking spray

Bags white and dark chips (12 oz.)

Spoon

Pot Holders

Cookie Sheet

Wax paper

Bag of pretzel rods (12 oz.) or other food

Small candies or sprinkles

You Tube Video Demonstration

Task Analysis or Recipe

Chocolate-Covered Pretzels with Sprinkles

Recipe courtesy Paula Deen for Food Network Magazine
Prep Time: 20 min, Inactive Prep Time: 24 hr 0 min
Cook Time: 2 min; Level: Easy
Serves: 24 pretzels

Ingredients:
• 1 12-ounce package milk chocolate chips
• 1 12-ounce package white chocolate chips
• 24 large pretzel rods
• Assorted holiday sprinkles

Directions:
Place the milk chocolate chips in a microwave-safe bowl and the white chocolate chips in another. Microwave one bowl on high for 1 minute. Remove and stir with a rubber spatula. (The chips should melt while you are stirring, but if they don’t, you can continue to microwave for 15 more seconds, and then stir again.) Wash and dry the spatula. Microwave the other bowl on high for 1 minute, and stir until the chocolate is melted.

Dip one pretzel rod into the milk chocolate; use a spoon or butter knife to spread the chocolate about halfway up the rod. Twist the rod to let the excess chocolate drip off. Hold the rod over a piece of wax paper and shake sprinkles on all sides. Place the pretzel on another piece of wax paper to dry. Coat another pretzel with white chocolate and sprinkles. Repeat until you’ve coated all the pretzels, half with milk chocolate, half with white chocolate, and let dry completely, about 24 hours. (Cover any remaining chocolate with plastic wrap and store in the refrigerator.)

Copyright 2011 Television Food Network G.P. http://www.foodnetwork.com/recipes/paula-deen/chocolate-covered-pretzels-with-sprinkles-recipe2/index.html
All Rights Reserved

Gifts and Favors, Holiday Variations

President’s Day, Halloween, Easter, 4th of July, Christmas Variations

All American Holiday

Gifts and Favors

Stick Pretzels

Paula Deen’s Christmas Pretzels

Halloween chocolate covered pretzels

Comments:

Does it make sense that an activity as simple as making a chocolate covered pretzel can be a learning and self-esteem project? Can teachers, parents and directors of day programs make this more? Can they blow the opportunity?

Have you any ideas on this or other projects?

Keep Climbing: Onward and Upward

All my best,
Mary

Other Related Articles:

It’s a Jungle Out There| Inclusion in the Grocery Store

Language of the Heart| Heartaches and Heartsongs

Busy vs. Bored| Life Space Analysis for People with Disabilities

The Animal School| Differentiated Instruction

Test Questions| Inclusion or Segregation?

Teachers| Segregation or Inclusion

Happy Ever Afters| One For The Money

Norm Kunc: What’s Your Credo?

Grandma gets a Thong

The twelfth day of Christmas is Jan. 6th–Little Christmas, The Feast of the Magi.

Actually, it’s all the Magi’s fault. They are the ones credited with giving the first gifts.

Based on the number of people in line at the return desks last week, I’d say many people had problems with their gifts. (Actually I could see Mary and Joseph thinking the gold was useful, they could buy a wagon or better donkey, but what were they supposed to do with Frankincense and Myrrh. Myrrh–really????)

I know it is supposed to be the “thought that counts,” but it really is much more. Gifts are a whole cultural phenomenon.

My mother is 89.

Recently she’s had hip replacement surgery and has trouble shopping for herself.

Two months before Christmas she told me she wanted slippers. Slippers it is. I don’t have to guess her gift. And this is great…EXCEPT

Every day for the next month she would call me on the phone (usually at 6 AM because that is when she wakes up and is thinking about slippers) and define what kind of slippers. They had to have rubber soles so she could wear them outside if she wanted. And this is great…EXCEPT

She couldn’t tell me her size. It seems some Large slippers are size 8-9, some Larges are size 9-10. And the manufacture, design, model, production all make a difference.

I went to three different stores and brought her “Pair number one” on Thanksgiving. She didn’t even try them on. Which actually made it easier to exchange them, which is great…EXCEPT

She really wanted black. But none of the stores made black slippers. So, I picked out some navy size 8′s and 9′s and 10′s, and some pink (everything she owns is pink) in a size 8-9, and 9-10. And I figured I’d give her a choice. Which was great…EXCEPT

She decided she wanted slippers that weren’t slip-ons. “Only the devil would make slippers with open backs” and she has had slippers that covered her whole foot, well–her whole life. And, she thinks she has ugly toes, so–none of those slippers with toe cut-outs. So, I boxed up and returned the slippers. And it was great…EXCEPT

The next three stores didn’t have black or whole foot slippers. But they did have navy.

You know where this is going, right?

Yep, I rebought her the same slippers (that she wouldn’t even try on) from the first round. She opened them on Christmas and said they were perfect.

So, it makes you wonder.

Was the gift really about slippers at all?

Grandma and the Thong

The picture above is from a previous Christmas. My sister Martha worked in a lingerie store and gave each of the girl cousins a pair of thongs. They thought they were nice. Certainly something practical they could use. EXCEPT

She also gave one to Grandma.

The gift became an urban legend in our family. It brought down the house.

Even though mom didn’t even recognize the thong as underwear—it was the shared experience with her grandkids that made it the perfect gift.

Which again makes me wonder about gifts.

Aaron’s Christmas Gift and Charity

This Christmas Aaron went to a Christmas Party sponsored by a local non-profit. These are kind folks. Many of the people with severe disabilities are the poorest people in the county and don’t even have family members who can give them gifts. So, this is not only a nice gesture, it is an opportunity for these poor souls to get a little something extra.

This year the non-profit got items donated by local businesses to give as gifts. Over 150 adults with disabilities came to the Christmas Party and Dance.

There are so few recreation opportunities, many of the people put on their best clothes and showed up early. Many more wanted to come, but there was little transportation and they depend on staff–who didn’t want to bother.

At the party, even though they arrived early, there were only chairs for 100 people. So Aaron and Jack, his roommate, had to stand and hold their coats.

Since Aaron has balance problems, and couldn’t understand why he couldn’t sit down (people were guarding their chairs) he started biting his hand and pinching others. Not good behavior at a party.

Their staff person made the sensible decision to leave (even more people were coming in the already over-crowded room). Aaron and Jack were each given a “gift bag” at the exit. Which was nice… EXCEPT

The gift bag had a pair of donated slippers. Yea! I would be laughing too, slippers… EXCEPT

The slippers were size 11.

Aaron wears a size 9.

Now, no one with balance issues is safe wearing a pair of slippers two sizes too big. And, unlike my mother, these slippers were charity—donated. So there was no gift card or receipt, most people had no dutiful daughter, family or staff who cared to make an exchange.

And, Aaron couldn’t understand why anyone would give him slippers he couldn’t use. So he just carried the slippers around the house—making me crazy that good, kind people could be so dumb. After all who is the “intellectually challenged” person here? Did they think they wouldn’t notice the slippers didn’t fit? Or all people wear size 11?

Is “Just getting something to open” the point? Even if they can’t use it?

What is Charity?

If you plan a charitable event and are giving gifts:

Don’t

Don’t just arbitrarily pass out slippers, or coats, or T-shirts with misspelled words.

Don’t give radios with no batteries—because they want to use the radio that minute and staff often won’t be bothered with batteries.

Don’t give them things you couldn’t sell or are broken.

Don’t make your interaction a one-time-event.

Do

Do have a party with chairs and refreshments for everyone.

Do get to know people as individuals

Do think about what YOU would want to get

Do think about normalization, age-appropriate entertainment and gifts.

Do think about transportation and staff and family members

Do consider that the shared experience, like Grandma getting the Thong, may be the best gift ever—no excepts.

Keep Climbing: Onward and Upward

All my best,

Mary

Comments:

Okay, best/worst gift stories? Am I just being an ungrateful jerk? What is the role of charity? Is it appropriate to give broken, torn things to Goodwill/charity? Only 258 shopping days until Christmas????

St. Nicholas treats

—

Jolly Ole St. Nicholas| Christmas List Disability Style

(Parody on popular Christmas carol)

In our family, December 6 is the night you leave your Christmas wish list in your shoes or stockings. The German tradition says St. Nicholas comes when you are asleep, exchanges your list for a small bag of goodies and then delivers your list to Santa.

I’ve shared some of our great family stories from when my sons were younger in St. Nick and the Batman socksand St. Nick| Two Special Sons.

Aaron turns 38 years old next week. So what would a Christmas wish list look like for a parent of an adult with autism and developmental disabilities?

The old kindergarten teacher in me thought you might want to sing along as I make a parody of the popular Christmas song, Jolly Ole St. Nicholas, and send my Christmas list out to virtual Santa Land.

Jolly Ole St. Nicholas, lean your ear this way.
Don’t you tell a single soul what I’m goin’ to say?
Christmas Eve is coming soon, now you dear ole man.
Whisper words of hope for us, reassure us if you can.

Aaron’s survived the ups and downs of another shaky year,
Thank you for our family and friends who are so very dear.
We did our best to make things work, but the path’s not clear.
Please St. Nick, we beg of you, hear our fervent prayer:

Aaron needs a roommate quick, one with family ties.
Someone who will be his friend, could be girl or guy.
An IO waiver would do the trick, at least a level 5.
Someone who‘s a gentle soul who wouldn’t harm a fly.

Aaron voted for our President he knows his fate depends
On Medicare and Medicaid and the generosity of friends.
He wants to know HUD will exist for the house he now calls home.
He wants to meet his neighbors not spend his time alone.

Keep him safe and free from harm, find us staff who care.
No more elves with phony smiles, who do whatever they dare.
They’re now suspended by the state and deserve lumps of coal.
Assure us our government has the resolve to fill their role.

Aaron wants a healthy life, join groups and have some fun.
He wants to swim and ride a horse before next year is done.
Aaron’s mom and dad love him so, but worry night ‘n day.
Dear St. Nick we count on you–Aaron’s in your hands today.

Comments:

What other things would you ask St. Nick for? Any stories to share?
Did you check out the Batman socks story link, it’s a good one.

Keep Climbing: Onward and upward.
All my best,
Mary
–

Related Posts about St. Nick and Christmas:

Mom’s I.E.P. for the Holidays

St. Nicholas meets the Disney Princesses

There’s no Santa Claus| Transformational Experiences

Age Appropriate Activities for People with Disabilities| Chocolate Covered Fun.

—-

When Schools say “NO” to Inclusion

I hope you will share your thoughts in the comments.


Keep Climbing: Onward and Upward
All my best,
Mary

Related Blog Posts:

Note: Since this whole website is about inclusion, almost every article tells part of the story. Some are about school issues, many are about adult issues. Here is a sampling:

What is Inclusion?

Dream Plan 1 for Aaron, Normalization

Dream Plan 4: Aaron is an adult

The Race Toward Inclusion: Do you see it?

Better than Church

Building Community| One grocery trip at a time

Test Questions| segregation or inclusion?

The Animal School| Differentated Instruction

—

The Power of our Words

This is part 3 of a series on classic concepts to understand Normalization and Inclusion.

The first was Norm Kunc| A Credo of Support

The second was about The difference between the words “Disability” and “Handicapped.”

Mayer Shevin wrote this classic poem. I’m hoping you’ll add your thoughts in the comments.

“The Language of Us and Them”

By Mayer Shevin, 1987.

We like things.
They fixate on objects.

We try to make friends.
They display attention-seeking behaviors.

We take a break.
They display off-task behavior.

We stand up for ourselves.
They are non-compliant.

We have hobbies.
They self-stim.

We choose our friends wisely.
They display poor peer socialization.

We persevere.
They perseverate.

We love people.
They have dependencies on people.

We go for walks.
They run away.

We insist.
They tantrum.

We change our minds.
They are disoriented and have short attention spans.

We are talented.
They have splinter skills.

We are human.
They are…….?

What do you think?

Okay, truth time.

Have you ever used any of these phrases?

Are we really different?

Is there a legitimate reason for the We verses They? the Us and Them ways of thinking?

Are these words:

more than just semantics
more than about insiders/outsiders
more than prejudice
more than stereotyping…

and everything about survival, inclusion and being loved.

Thought Experiment

In Erving Goffman’s classic book, Stigma: Notes on the Management of Spoiled Identity (1963) he talks about social stigma and how words like we/us and they/them are ways we separate and distance ourselves from other people and what is happening.

Check out this recent article about abuse, neglect and budget cuts in an institution in California.
California Watch slams State Institution | Neglect, Weak Oversight.

How do we decide if we will get involved or distance ourselves?

What makes us care, not care?

Think about how the social stigma of we, us, they and them affects adults with autism and developmental disabilities.

Think about how social stigma affects our decisions.

If you have a son or daughter, a relative or neighbor in this institution, then this story is about “us and we”–it touches our lives.

If you care about people with disabilities, this story is also about “us and we” because the next story may affect our loved one.

I hope you will share some of your thoughts and continue the discussion in the comments.

Keep Climbing: Onward and Upward

Mary

Related Posts

The Yet-To-Be Disabled.

Socially Constructed Attitudes| What do you see?

Test Questions| Segregation or Inclusion?

—

“Representative Payee”

“Representative Payee”| SSI, SSDI

When Aaron, our son with autism and a developmental disability, moved into a house with another man, we became his legal guardian.

It was the only way to protect Aaron legally. It was the right thing to do.

One of the first decisions became who was in charge of finances–the individual, the residential provider, or the guardian.

The Individual

Certainly if your son or daughter is capable, that is the first choice. Remember, the individual can get support on their ISP (Individual Service Plan) to help.

The Residential Provider

If you are the parent of an adult with autism or other disability who is not able to handle their own finances, then this service can be written into the ISP (Individualized Service Plan) and handled by the agency or residential provider.

The residential provider cannot charge for this service, but it is one of the services in the Individual Option Medicaid Waiver.

For 13 years, my husband and I let the residential provider be the SSI and SSDI “representative payee” and handle his finances.

We added checks and balances:

In Aaron’s ISP, the company would send us monthly statements by email and the County Service Coordinator checked the Residential Provider’s records, so it worked great.

After all, as parents we know we won’t live forever, why not put the financial system in place while we can still make sure it works.

Checks and balances plus it was less work for us–YEA!

Guardians become “Representative Payee”

Last month we fired our residential provider. This made things tricky so I decided to become the “representative payee” myself.

Here is what I’ve learned:

How do Guardians become “Representative Payee” for SSI, SSDI?

Go to your local Social Security Office, you cannot do this online. Allow at least an hour.

Bring:

Guardianship Document,
Your child’s Social Security Card
Your Social Security Card
Your valid Driver’s License with current address
The bank account number and routing number for the automatic deposit.

Sign in:

“OTHER”
You will need to have a face to face interview.
Make sure the agent changes the information for both SSI and SSDI if that is appropriate. They are two separate systems.
You will be given a contact person for your future needs.

Additional Information

You can call 1-800-772-1213 and ask for an “agent,” in addition they have recorded information on the responsibilities and frequently asked questions about “representative payee.”

Website:

Representative Payee FAQ

Timelines

Timelines are based on the first of the month
i.e. Automatic social security deposits are on the first and the third of the month.

It will take a month or so to get the deposit information transferred.

Keep Climbing: Onward and Upward

All my best,
Mary

Related Posts:

Hope for Families

HUD Tips for People with Disabilities and Families

A Parent’s life| Thinking, Worrying and Actions

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?

Aaron learning money skills to use in store

Functional Curriculum

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

Mary

Related Posts

Building Community| One grocery trip at a time

It’s a Jungle out there| Inclusion in the grocery store

Kill the Turkeys! Life Lessons for People with disabilities

–

Check out the graduation pictures of my two sons.

What’s the same? What’s different?

BACK to SCHOOL Article 3

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

What is Inclusion?

The concept of INCLUSION is both simple and complex.

It means being able to go to the same school your brothers and sisters go to. The same school that is on the realtor’s fact sheet, you know the one: “If you buy this house, here is the neighborhood school you go to.” That’s simple, right?

In 1980 in Ohio, when my son Aaron turned 5 and was eligible to go to school, because he had the label of autism and developmental disabilities, he and other children with IQs below 50 were legally excluded from public schools. That’s complex.

It all changed because of Federal Legislation, yea those dang Government laws everyone hates.

When you suffer from exclusion and segregation, those Federal rules and regulations save the day.

History Lessons: Past

When new schools were built in the 50s-60s-70s-80s, the white schools became “negro” schools. When even more new schools were built for the white children (think baby boomers), then the children with disabilities were moved up into the schools vacated by the “negroes.”

Schools: White to Negro to Handicapped to Demolished

The Education for All Handicapped Children Act was passed in 1975 and gave parents the right to a free appropriate public education, zero reject, related services, due process and the “least restrictive environment.”

At the time of the Neill Roncker and Aaron Ulrich due process hearings, the decrepit Dyer School was a handicapped-only school. Cincinnati Public Schools rented the school to the Hamilton County Board of Mental Retardation/Developmental Disabilities for $1.00 a year (Roncker hearing).

Parents and local Board of Mental Retardation officials were happy to be able to move out of church basements into the discarded school. They were also thrilled to be building new segregated facilities, handicapped only, with local levy dollars.

That was our court battle–to be able to ride the bus, go to school, eat lunch with typical kids… in our neighborhood school–not a “handicapped-only” school.

Inclusion is a civil right

“Inclusion is a right, not a special privilege for a select few.” – Federal Court, Oberti vs Board of Education.

For information about the history of children with disabilities check out the Minnesota DD Planning council’s excellent resource, Parallels in Time 2

History Lessons| Inclusion Today

Here is a recent video about a young woman with the label of autism. You will see her general education teacher, her parent, her inclusion facilitator, the general music teacher but most of all you will see the future citizens of our country.

Here is a picture of inclusion. A picture of hope. (Thanks to Donna Owens, OCALI)

Thaysa from Dan Habib on Vimeo.

Definition of Inclusion

Giangreco (see Resources) has defined the criteria for inclusion:

Students go to the same school as their brothers, sisters, and neighbors;

They participate in the same environments as their peers (lunchroom, bus, playground, classrooms);

According to their IEP, the student has the extra supports they need to be successful (therapy, adapted curriculum materials, an aide, teacher inservice);

There should be a natural proportion of children with/without disabilities, (if 10% of students are on IEPs in a school–no more than 10% of the students in any one class should be on IEPs).

An Inclusive Graduation Ceremony

So did you see any similiarities and differences in the graduation pictures above?

Almost everything about Tommy and Aaron’s Graduation ceremonies were the same. At the time, Lakota High School was one of the largest high schools in the state. Tommy and Aaron both had HUGE graduating classes held at the University of Cincinnati. Both had cheering parents and friends.

The difference between Aaron’s school experience and his typical brother Tommy’s, is evidenced in their graduation pictures above.

Aaron didn’t have to go through a segregated graduation ceremony and earn the right or prove he was ready to go to the inclusive celebration.

We did prepare by considering what would Aaron need to be added or subtracted from the typical graduation experience.

In his case, Aaron needed an extra support person, his wonderful teacher Mr. Mike Valdini. And, what needed to be subtracted–the mortar board hat!

I like to think our early battles for inclusion help the young children today—all of them, with and without disabilities.

Keep Climbing: Onward and Upward

Mary

Comments:

It now seems like the concept of inclusion has been around forever. But like any civil rights movement, we often don’t move forward in a straight line. What are some of your experiences?

Related Posts:

The Values of Inclusion from Down Under

Down by the Ole Mainstream

-

BACK to SCHOOL Article 2

To celebrate the new school year here are some of my favorite posts.
Article 1:
Why Do We Go to School?

A New Year of Learning

This is one of my favorite stories–an updated article from when Aaron was 8 years old and Tommy 6. Enjoy!

Kids in a Box

It was the weekend before school began and Cincinnati was sweltering from a week of 90 plus temperatures with over 50% humidity.

And partially because most of our neighbors don’t have air conditioning, and partially because we enjoy each other’s company, all the moms were sitting on the porch steps waiting for the street lights to signal the time for baths, bedtime and the end of summer.

Several of the children were busy with final rehearsal for the “Ralph Avenue” version of Snow White and the Seven Dwarfs. Erin was the wicked queen, Allison the prince charming and the younger children Eric, Patrick, Tricia, and my son Tommy were assorted other characters.

The kids ran in and out of the yards wearing their winter caps with the tassels dropping over, trying to look like dwarfs.

After a while, the large cardboard box from Allison’s new stove changed from being used for the stage scenery for dwarfs to a cool hideout for cowboys.

Patrick’s mother was telling us a newspaper reporter stopped by her house to do an interview with “a new kindergartner.” It would be a three part series on Patrick’s impressions before school began, during in January, and a third article after in June.

The poor reporter had a time of it because every time she asked Patrick (5 yrs.) about the imminent kindergarten experience, Eric (6 years and a kindergarten veteran) would give his answer, including a heated discussion about, “Who would be picked for the cookie passer?”

It was so much fun to be watching the kids and hanging out with other mothers but the beginning of school is very traumatic for me because of our continuing problems with the special education school program for my son.

Aaron has the label of autism and severe intellectual disabilities. A new year signals the beginning of another year of battle for inclusion.

But maybe because it was too hot and maybe because I was surrounded by friends, I continued to sip my ice tea and enjoy the normal conversation of my neighbors.

Patrick said his favorite football team was the Jets. His brother Michael, age 3, noting the adults’ interest, announced his favorite team was “the helicopters.” Jets—helicopters, why not?

Tricia’s soccer team won every game last year with a very gentle and knowledgeable coach. This year they won their first game but the new coach yelled and screamed and was upsetting the team and their parents. The parents wondered if victory was worth the price?

Moments that make parenting fun

Tommy went for his school physical and when the nurse asked him to urinate into a cup he burst into tears.

I pointed to the counter and its rows of labeled cups and told him everyone—even grownups–had to do this.

Sobbing he said, “Okay—but I won’t drink it.”

Later he asked, “Mom, why do they need a toilet in there is everyone pees in a cup?”

My friends and I exchanged sale prices on jeans and problem solved about the best backpacks and gym shoes with shoelaces that didn’t need to be tied.

We laughed, reminisced about summer and shared the thunderstorm warnings.

Eric’s Mom passed out popsicles.

All this time Aaron was walking up and down following the crowd of “dwarfs” as they flitted from yard to yard. He didn’t get a lot of direct attention, yet he was part of the group. For a time they all put on football helmets and Aaron went over, knocked on them to hear the funny sounds and everyone giggled. Aaron got quite excited and even though he is tactily very defensive he allowed them to place the helmet on his head, for a minute anyway.

Tommy brought out his golf clubs and soon Eric and everyone tried a few swings hitting a large flowered ball. Once Aaron was too close and thoughtfully Patrick took his arm and helped him get out of the way and Eric adapted and shortened his swing.

Then the crowd was back down the street again. This time Aaron waited for the abandoned golf club. He bent over and balanced perfectly picking the club out of the grass. He began in his own way to hit the big plastic ball around the yard. Then he too lost interest and headed back down the street to find the other children.

Four years ago, the same day we moved into our home, a group of people on the other side of town filed a lawsuit to protect their neighborhood from the “danger’ of a proposed group home for people who were labeled mentally retarded. I remember my worry of meeting our new neighbors and their reactions. What would be their concerns, fears? Would they allow us into their community?

There have been awkward moments when Aaron would do something inappropriately. But then “normal” “regular” young children have their good and bad moments like the rest of mankind.

Now Aaron was just Aaron and each neighbor had worries about jobs, children, families—the usual. We were a part of their neighborhood, their community.

As the sky darkened and the parents began to gather up the toys, football helmets, golf clubs and the talk again turned toward getting the children to bed so they would be fresh for the first day of school, I couldn’t help but think of how children and adults learn.

We use our creativity for Snow White costumes and playing with discarded boxes. We use our problem solving skills to find sale priced jeans to stretch our budgets. We use skill development including repetitive drill and practice for playing soccer and for picking up golf clubs out of the grass. We build on our experiences and associations whether they are jets and helicopters, cups and drinking, or how we feel about people who are different than we are. We also learn from people, some of whom are rough coaches, some parents, some newspaper writers, and some—neighbors.

School may begin tomorrow but in our neighborhood a whole lot of learning happened tonight. And perhaps, just perhaps—because Eric and Pat and Tommy will grow up with their incidental learning, experiences, associations and relationships with Aaron, the years of battles for belonging, full inclusion and citizenship will be shortened and our war for acceptance will be won.

Sometimes the make-believe lessons of Snow White overlap with the real world lessons of our family. After all, wasn’t Snow White the one who sang: “No matter how your heart is grieving, if you keep on believing, the dream that you wish for will come true.”

Keep believing, keep dreaming and a Happy School Year to All.

YOUR TURN

Has our dream of inclusion for all kids come true? Certainly more children now have the opportunity. Aaron, Neil Roncker, Jenni Wetzel, Julie McMahon–they were the first kids in the doors of the public schools in Greater Cincinnati. I believe with all my heart they touched the lives of their peers who are now grown and sending their own children off to school.

And some of these young parents became the doctors, teachers, bus drivers and parents of kids with special needs. Our lives really are all part of each other, all part of the circle of life. I hope this new generation feels better prepared. I hope the schools their children attend are also better prepared. I hope our communities are more welcoming to those who have differences.

What dreams are we still wishing for? What lessons are we still learning?

Comments

Please leave a comment so we can celebrate this new year of learning.
What are you thinking about as the school year begins?

Keep climbing–onward and upward.

Mary

Related Posts:

IEP Videos

Partners in Policymaking

Is it to go to magical places?

Is it to make friends?

Is it to keep kids off the streets?

Is it to give Mom and Dad a rest? Or someplace for the kids to go while she/he works?

Is it only to learn to read and write?

When our country was founded, education was generally for the male children of rich property owners. They were to prepare to become businessmen and the governors of the lower classes.

Jeffersonian Philosophy of Education

Is the reason we go to school the Jeffersonian concept that a democracy depends upon an educated population?

This philosophy teaches we need to learn so we can become knowledgeable voters, dedicated citizens and choose wise leaders who govern for the common good.

This makes sense to me, but if you listen to many of the current politicians and public media personalities they seem to suggest the purpose of the school is to teach everyone to think the same way?

Their way.

And if you don’t, they will pull their children out of public school and either home school or put them in private schools where they can control the curriculum and the way people think.

They seem to think this is protecting their children from harm—these strange people and ideas would hurt their children.

But what about people who are different, including people with disabilities?

Measure of a Society

“The true measure of a society is how it treats its most vulnerable citizens.”

So, is part of the reason we go to school to learn how to live with society’s “most vulnerable citizens”? To learn about how we can all share the resources and problems of our common society?

To learn to care about others?

To learn to see strength in diversity?

To prepare ourselves and others to become one of those “most vulnerable citizens”?

Is the American school still the great melting pot that gives us all a common experience? and sees value in our diversity?

This is certainly the goal of inclusion. See related post, What is Inclusion?

If everyday ALL children go to the same schools, get to know each other on a personal level, share time on the playground and lunchroom and bus and in the classrooms–there are valuable lessons in just being together with people who are different than we are.

And maybe one of the lessons is–we are not so different–inside we are the same.

What do the history books say?

In the late 90s, I was teaching education majors who wanted to be teachers.

I took my Introduction to Exceptionalities classes to our university library which had a collection of textbooks being used in classrooms all over the country.

Their assignment was to examine one of the high school textbooks in American History, Problems in Democracy or World Histories and look for pictures or references to people with disabilities. Many of these college sophomores were able to find the same textbooks they used when they were in high school.

Out of the 20 different textbooks they evaluated, no textbook had more than four references to anything about disabilities.

The references, in a sentence or two, referred to:

Helen Keller was deaf and blind and traveled in the Wild West Show, President Roosevelt used a wheelchair, and the American with Disabilities Act passed in 1990. In several of the textbooks, an additional reference said, “deinstitutionalization caused many people who were mentally ill to become homeless” with a picture showing a man sleeping on a park bench. That was it! And the last message was not positive.

People with Disabilities are often Invisible People

People with disabilities have been basically excluded and invisible in the traditional curriculum.

In a culture that asks its children to “not stare,” and “beware of strangers” we have taught our children to ignore and avoid people with disabilities. Many churches only teach about praying for miracle cures and giving charity and alms to the “handicapped” (word from “cap in hand”). So, though there has been some progresss, it is not surprising our textbooks still avoid the whole conversation of disabilities and differences.

The increase in college “Disabilities Studies” majors and minors across the country is a strong beginning and step in the right direction. Kudos to those who are pioneers in this new movement. The recent Tribute to Ed Roberts is an example of people who care recognizing the contributions of great Americans to the freedom and inclusion of all.

Yet, I would bet if we repeated this textbook assignment today in 2011, there would still be a scarcity to references about people with disabilities and of all minorities; though I think the textbook companies are responding to some of the criticism.

What is the purpose of education?

So besides becoming informed citizens, what is the purpose of education, except to prepare each of us in the attitudes, vocational, domestic, community, and leisure skills we need to function successfully the 50-60-70 years of the rest of our lives?

How can we learn to make choices? To learn to ask questions? To learn to solve problems? To learn to work and live together? To learn about ourselves, our ways of making sense of the world? To learn about diversity?

Would our government officials act differently if they followed Thomas Jefferson’s ideas on education? If they went to school with people who had disabilities or had differences?

Schools and Parents

One teacher, one therapist may be great for a year or two but professionals come and go. The parent is the constant in a child’s life. We know our children the best and are the experts on our child’s likes and dislikes, their learning styles and behavior in the home and community. We know our child’s history better than any psychological profile that sits in the school office. We know our child is more than the words on their Individualized Education Plan (IEP).

Our role as parent is a difficult one because we represent the continuity of our child’s life. We know their past, we are part of their journey. But are we willing to risk our children learning about diversity and differences?

There are many parents of children with disabilities who are afraid, it is understandable, but will that fear hurt our children and the next generation of citizens.

We know our neighbors, our community, the life our child has outside of school. Check out related story: A new year of learning. We can share our child’s dreams for the future and help them to come true.

Each day parents are challenged as “care managers” to insure cooperation and creativity among those who provide service to our children.

Each day, as our children climb on the school bus, they are a step closer to being adults. They step on the magical bus into their future and the future of our country.

Each day, we must ask ourselves: “Are the skills they are learning going to prepare them to become productive adults, caring and responsible citizens?”

Magic Bus Ride?

The school year is a precious opportunity for new growth. An opportunity to forget the hurts of the past, no matter how difficult. A new school year is a fresh start.

Build that future dream with much hope and picture the magic bus that can take you and your child into a year of wonder, new adventures and new learning in a land of diversity. We learn from our children and they learn from us, and that is also magic.

Wishing you a great year full of magic.

Comments:

When you were in school, how did you learn about people with disabilities, differences? Do you think there are things to be learned by sharing your lunch with someone who doesn’t talk with words? With someone who uses a communication board to talk? With a classmate who learns differently? With a friend who just happens to have a label of disability?

Keep Climbing–onward and upward.

Mary

Related Posts

Happy Feet,” “Retarded Teeth” and “Carnival Goldfish”

Test Questions: Segregation or Inclusion?

Oscar Pistorius, Inclusion at the Olympics

Olympics, Disabilities and Inclusion

There are many legends around the origins of the Olympics. But the main idea was countries and individuals would meet every 4 years and set aside conflicts–and this shared experience would lead toward greater understanding and fewer conflicts.

Many believe the ancient Olympic games began with a foot race.

The 2012 Olympics are currently being held in London, England. And a footrace is not so simple. Turns out, the definition of a “foot” is a source of conflict.

The Olympics story of Oscar Pistorius from South Africa is an inspirational lesson about the inclusion of people with disabilities.

Check out this video, “The fastest man with no legs” who uses his “blade runners” to race in the finals of the Olympics.

Yes, he races in the segregated Paralympics, but also in the inclusive regular Olympics.

This is an example of inclusion, self-advocacy, the power of a supportive family and an exceptional adult with disabilities.

I think this is also an excellent example of what the Olympic Spirit is all about. The Greek founders might never have envisioned this sort of story, but I’ll bet they were cheering up on Mount Olympus as Oscar became one of the fastest runners in the world.

“Unfair Advantage?”

If you have feet, you have tendons and muscles which give a “spring” to your step.

If you don’t have feet, you … what—sit at home? OR…

You only have the choice of a segregated Special Olympics or Parolympics event?

As Dennis Burger says, “I always think it’s ironic when officials claim an unfair advantage by a guy with a prosthetic device. Go Oscar!”

Natalia Partyka, Women’s Table Tennis

Go Natalia!

Lessons from the Olympics

Why is it that those of us who would never spend 10 seconds playing or watching ping pong, or skeet shooting, or footraces… voluntarily devote our precious time to these events on TV?

Why is it we choose to root for one team or one person?

With all the important events happening in the world, why would the evening news start out with the country’s Olympic medal count?
What is the magic that draws our attention?
I think the answer has to do with the concepts of “Us” and “Them.” The answer is rooted in our deep psychological need to belong.

We can wonder about the concepts of nationalism but like it or not, we are part of a tribe, a nation, we are part of “Us.”

And when the collected ego of our nation wins, we win.

So we say, “Go USA” or “Go England” or “Go Canada” when we really don’t care one bit about archery or who can do the backstroke.

The Need to Belong

In Maslow’s famous “hierarchy of needs” belonging and having people who care about you is critical to survival–more important than how many skills you have or self-actualization. Sometimes this means being part of a tribe, sometimes being part of a family, sometimes part of a church, school or … nation.

Or, sometimes sharing a bond with someone with a disability.

So when we hear about a runner who uses blades because he has no feet, or a woman who only has one hand and is a table tennis champion—suddenly we care about them.

We switch our allegiance and transfer all our goodwill to these courageous individuals because they have a disability and are part of our TEAM INCLUSION. We don’t know them personally, we aren’t a part of their country, but they are part of our heart.

They prove that all our daily advocacy efforts are worth it. That the dream of inclusion can be real.

They are changing the attitudes and social consciousness of a whole generation.

And it doesn’t matter if they are from South Africa or Poland or anywhere—they belong to us and our vision of an inclusive world.

Comments:

I’m hoping you and members of our Climbing Every Mountain community will also share stories of belonging, inclusion, the Olympics, and building communities.

Keep Climbing: Onward and Upward

Mary

Related Links:

The Values of Inclusion

See Aimee Mullen in a previous Olympics.

Do the Words “Disability” and “Handicapped” mean the same thing?

Aaron’s Olympic Moment

Aaron’s Inclusion on the Junior High Track Team

–