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Posts Tagged ‘social role valorization’

Celebrating St. Nick + Two Special Sons

Celebrating St. Nick and Two Special Sons

St. Nick: New traditions

"The stockings were hung by the chimney with care, in hope that St. Nicholas soon would be there."

Family Traditions:

Because of our German heritage, St. Nicholas’ Feast day on Dec. 6th was the start of the Christmas season. The tradition of putting out our socks (or shoes) was always great fun.

Aaron, our son with the label of autism, and Tommy, our son with the label of normal are now 36 and 35 years old. Last post I wrote about how our holiday celebrations are evolving: St. Nick meets Disney Princesses.

Old Traditions

The first year we were married, my mother-in-law Jean, hand-made Christmas stockings for our mantle. Of course, we were living in a small apartment with no fireplace or mantle, but it began a family tradition. You know this was a long time ago because while Tom’s sock was a typical crew man-sock, mine was shaped like silk hose plus garter. (Do they even make those anymore?)

To personalize the stockings, Jean lovingly sewed small schoolhouses on both of our stockings because we were teachers, adding a felt wedding ring on mine and a felt set of golf clubs on Tom’s. When I was pregnant, she made an “Our Grandbaby” sock for Aaron who was going to be born in December. Later I store-bought some Christmas stockings for both my sons but glued and sewed some Christmasy trim on the socks.

Now a generation later, I captured our family’s own Norman Rockwell moment—Isabella pointing to the “Our Grandbaby” stocking on our mantle.

Making New Family Traditions

Lots of families put up Christmas stockings, some find stockings that are personalized with each person’s name, or hobbies, or interests like socks for dog lovers, Barbie dolls, sports fans, or ….

But, our family made the old tradition our own by adding a token of some special moment each year on St. Nick’s Feastday.

Adding a Memory a Year

Throughout each year, Tom and I look for small tokens and give them to each other on St. Nick’s Day.

Vacations and trips were easy. There were always ready-made patches, pins, buttons we could pick up at souvenir shops. Scouts, school events, sporting ribbons and awards also were small and could be easily attached to the socks. We even added some mementos inside the socks, like Tommy’s business cards for each new job and Aaron’s first pay check. Now the front, back and inside of the socks carry magic moments to remember.

Our socks have become treasured scrapbooks of our lives.

Tommy's Christmas Sock 35 years

Tommy's Christmas Sock 35 Years

Aaron's Christmas Stocking

Aaron's Christmas Sock 36 Years

What do you think? Does this tradition meet the test of inclusion+ normalization? Are Aaron and Tommy’s socks alike? Age-appropriate? Do these socks also celebrate their individual gifts and interests?

You can see Aaron’s Trolley Bus pin from our trips to the Smokies, the pin from Carlsbad Bat Cave, his school bus and Lakota Pin, his prom key chain, his Boy Scout patch from Woodland Trails, a horse pin from Cincinnati Riding for the Handicapped, National Park patches where he hiked with our family…

Tommy has Boy Scout pins, school patches from the cross-country team, buttons of him looking fierce in his junior high wrestling uniform. Tommy also hiked the same easy trails in the National Parks but those patches were not the same accomplishment they were for Aaron. Tommy was proud of his week in Philmont and the more difficult mountain hikes on the Appalachian Trail with his dad…

So both Aaron and Tommy had hiking patches. The difference was the intensity, duration and difficulty of the trails.

Both were proud accomplishments.

Transition

Tommy’s wife, Ana, bought Christmas stockings for their first Christmas together. Each year I give them some token to add to their sock. This year, Ana became a United States Citizen. After the ceremony the Daughters of the American Revolution passed out little flag pins. I asked for an extra one, planning to add it to her sock.

Aaron just moved into his new house, I have stockings ready for his first house decorating party, he will get a house key on his sock.

And so the tradition continues:

“The stockings were hung by the chimney with care, in hope that St. Nicholas soon would be there.” (Night before Christmas)

Wishing you many happy memories this holiday season.

Keep Climbing: Onward and Upward

Best,
Mary

Comments

I hope you’ll share some of your family’s holiday celebrations. Is this an idea your family can adapt? Does your family celebrate St. Nick’s or have some unique tradition?

Other stories you might enjoy:

Tale of Two Brothers: Sibs of People with Disabilities

Circles of Life: Family Reunions

Dental Visits| Saying AHHHHHH

Say AHHHH

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

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

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

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

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

Normalization–Yes; Age-appropriate–No.

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

How the Doctor Visit Works

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

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

Full Circle

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

Inclusive Dental Care | Autistic Dental Care–NOT!

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

Individualized Dental Plan

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

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

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

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

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

This is ASTOUNDING!

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

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

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

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

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

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

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

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

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

Dr. G.

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

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

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

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

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

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

State Cutbacks

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

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

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

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

Bill F.

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

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

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

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

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

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

Keep Climbing: Onward and Upward

All my best,

Mary

Comments:

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

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

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

Dream Plan for Aaron: 1981 (Part 1)

Hurry up lighting those candles

Who said Aaron was slow?

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

What is Normalization?

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

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

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

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

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

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

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

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

1981 Dream Plan for Aaron

Aaron will be educated in a public school with his non-handicapped brother and neighbors. He will have a functional curriculum (see related post) which looks at his needs in his life spaces (vocational, leisure/recreation, domestic, general community functioning). His out-of-school activities will evolve around his family and his own friends, interests and talents. He will be in age-appropriate settings: elementary school ages 5-10; Jr. High ages 11-13, Sr. High ages 14-21, job in the community 21+. He will begin vocational training now, at age 6, so he will be able to perform the job. (If he isn’t able to be a dishwasher, then he can be a dishwasher’s helper, etc… there is some job he will be able to do with success.) At the appropriate time, Aaron will move to a group home to live with others his age. Though dependent in many ways, Aaron will have self-esteem and confidence in the things he does and be a contributor to his family, his extended family, and society.

1981 Dream Plan for Tommy

Tommy will be educated in a public school with his handicapped brother and neighbors. He will have a functional curriculum which looks at the needs in his life spaces, (academic, vocational, leisure/recreation, domestic, general community functioning). His out-of-school activities will evolve around his family, his own friends, interests, and talents. He will be in age-appropriate settings. He will make a career choice and pursue training (vocational, university, apprentice…). At a time he decides is appropriate, Tommy will move to his own home, probably marry and begin his own family. He will have self-esteem and confidence in the things he does and be a contributor to his family, his extended family and society.

Normalization means…

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

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

Normalization means…

a normal rhythm of the day.

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

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

Normalization means…

a normal rhythm of the week.

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

Normalization means…

a normal rhythm of the year.

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

Normalization means…

normal developmental experiences of the life cycle.

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

Normalization means…

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

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

Normalization means…

living in a world made of two sexes.

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

Normalization means…

the right to normal economic standards.

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

Normalization means…

living in normal housing in a normal neighborhood.

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

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

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

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

Comments:

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

Keep Climbing: Onward and Upward

All my best,
Mary

Bulletin Board| Stop the “R” word, Wolfensberger dies

READING THE NEWS in OLD CHINA --  Hats and Hairstyles of All Descriptions
Creative Commons License photo credit: Okinawa Soba

Bulletin Board

Today and Everyday is “Stop the ‘R’ word” Day.

Parents, Advocates and Schools around the country are joining in.

Many people are always complaining that the world is too complex –there is nothing they can do.

Stop the “R” word Challenge

YOU can make a difference by choosing respectful language in your own conversations. Doable, Yea!

If you have a story, please share it in the comments.

Here are the articles I have posted on this topic as well as some information on Rosa’s Law which was passed last year to take the words “retarded” out of all public documents. This is more than just being politically correct, it is a step toward seeing people with intellectual disabilities as being “human.”

Love-not labels| Rosa’s Law

Retarded No More

The “R” word| A Challenge to Bloggers

Definitions of the word “Retarded”

Building Community| Using People First Language

Wolf Wolfensberger

Father of Normalization and Citizen Advocacy

Wolf

Wolfensberger

 
 
 
 
 
 
 
 

On February 27, 2011 Wolf Wolfensberger died.

Since 1973, Dr. Wolfensberger had been a professor in the School of Education at Syracuse University. His enormous contributions to the disability community will be felt for generations to come.  
 
Dr. Wolfensberger was the originator of Social Role Valorization, the Normalization Principle as well as Citizen Advocacy: major concepts that strongly influenced disability policy and practice in the US and Canada.
 
He was widely recognized as a major contributor to the field of intellectual and developmental disabilities in the 20th century had a reputation for being a stirring and controversial speaker.
 
He was the author and co-author of more than 40 books and monographs, and more than 250 chapters and articles. His writing has been translated into 11 languages.
 
His best known books were: Changing Patterns in Residential Services for the Mentally Retarded, The Principle of Normalization, PASS, and PASSING (Evaluation tools for programs to meet the principles of Normalization).