Archive for the ‘Climbing Every Mtn Blog’ Category

What is a Life Space Analysis?

Most of us spend our lives trying to squeeze in just one more email, appointment, phone call or…. We dream of the day we can have nothing to do. But is that really what we want?

James Chartrand recently encouraged Freelance Writers to read the book 168 hours: You have more time than you think (click here) by Laura Vanderkam. This book is to help “normal,” busy people look at their day in 15 minute segments and find more time for their goals and quality of life.

Twenty-five years ago in 1984, Dr. Lou Brown et al. of the University of Wisconsin-Madison developed The “Life Space Analysis” which has similar exercises to the 168 hours book. Is this a coincidence?

When people ask me, “What’s the purpose of the lives of people with severe disabilities?” (Like why should we let them live and use up our resources?) I have many responses (depending on my mood and who they are…) but sometimes I will answer: “People with autism and severe disabilities can take the complicated out of life. We can see life’s secrets because they help us think about basic truths we don’t usually think about.”

I think this is the beauty of the “Life Space Analysis.” It makes us see what a person with autism’s life actually looks like.  It gets to normalization (click here) and core values:

     *  Is it important to know how each person spends their day?

     *  Is it important to have a circle of friends and variety of people in our lives?

     *  Is it important that people get to go into the community and are not in one room for 24 hours, 365 days a year?

     *  Does a person with severe intellectual disabilities, autism and/or other developmental disabilities know the difference?

Life Space Analysis

The Life Space Analysis evaluation tool looks at the 24 hours in the life of a person with autism and/or disabilities:

* What was the person doing every 15-30 minutes?

* Who else was with them?

* Where did this take place?

*  Does this schedule stay the same every day and weekend?

For more information on this topic read the transcript of a presentation by Dr. Brown (click here).

Over the years, this has been a useful evaluation tool for my son Aaron who has the label of autism and severe disabilities.

When I wanted to show exactly how my son Aaron’s day consists of mostly sitting on the couch, licking books, and repeating “You Okay?”, I’d get a consultant to conduct an ecological assessment using the Life Space Analysis. We’ve had some great consultants over the years: Alison Ford, Patrick Schwartz and Wade Hitzing, as well as some local folks.

School Environments

When Aaron was school age, the “what, where, who” was pretty normal: a licensed teacher had the responsibility for planning Aaron’s day around a curriculum and his IEP goals. There was a process, accountability, best practice standards and a qualified team to make things work.

There was the normal rhythm of the school environment: bus rides, classes, specials like gym, art, music. There was the lunchroom, students in the halls, lockers, homeroom, weight training, therapy, and vocational job training around the school and in the community….

We had an excellent functional curriculum that looked at Aaron’s domains (click here). There were also after-school activities like basketball games, track and cross-country….

There were meaningful activities that filled the day, there were people who knew Aaron over a long time and had expectations that he grow and learn, and there were many rooms–spaces in the school, home, community. When Aaron was in school, he was on no medications.

Lou Brown used to say, “The more rooms, the more people in a person’s life–the more interesting that life will be.”

Adult Environments

Last week when my husband Tom and I were taking the tours of possible adult day programs for Aaron. One of the things we instinctively looked for was the “who, what and where.” What were the number of rooms? The number of people? and, What was happening in each of these environments? All the components of the Life Space Analysis.

Our “Life Space Analysis”

We went through several places, but here is the last center we visited:

The woman giving our tour had worked with Aaron 10 years ago when he was in transition from High School. She was a trained teacher and job coach. It was a vocational job and Aaron had a great experience. We were thrilled this woman might be back in Aaron’s life. She would know what he was like before he started to lose his skills and regress. Maybe she would be our ticket to getting Aaron a day filled with meaningful activities and people who cared about him?

Spaces-Rooms

The staff in this large center was especially proud of their “sensory room” where four people were watching a large 3-D movie on a big screen.

There were other rooms: a fenced “outdoor area,” an “art room” where they made and sold ceramic ornaments. There was a “cooking room” with kitchen appliances.

There was a large multi-purpose activity room where they had a party the day before.

We were told every day 6 vans took people out into the community in small groups to swimming, the Y, the park, shopping…. That sounded pretty good.

Aaron in this Environment

Tom and I were trying to imagine what this environment would mean for our son Aaron, who is 35 and has the label of autism. What did our Life Space Analysis tell us?

For over an hour, we visited the different rooms in the center, but there were only staff people in all these areas. Which struck us as odd.

All the “clients” (8-10 people with disabilities) were clustered in each of the 4 day “classrooms.” So around 40 or so people were there that day, all in those 4 rooms and the rest of the building was basically empty.

We only went in one of the classes, but we saw adults making halloween pumpkins–just like every pre-school in the country. NOT age-appropriate.

Most people were just sitting at the table doing nothing. One girl was talking in such a high pitch voice, it hurt your ears. This was a concern.

What would Aaron’s day look like?

When we asked what Aaron’s day would look like, we found out only the most capable people, who could be semi-independent, were allowed to go the the art and outdoor areas because they needed little supervision.

People like Aaron would only go to the art room… once in a while. But they couldn’t make any promises.

If Aaron was interested in going swimming at the Y, he might get to do it one time a month. But they couldn’t make any promises.

He would get to go to the sensory room with his group, and they had some music instruments that might be interesting to Aaron, but many of the other people liked the quiet and watching movies on the big movie screen. So again, they couldn’t make any promises.

There were also two empty rooms at the center. They were thinking of developing them when they got the funds for new furniture: “Maybe a place for people to come and eat lunch, maybe a microwave where they could fix their own lunches.” But, no promises.

In summary:

All the advances of the last 35 years, everything we have learned about people with autism and severe disabilities in special education programs and the research of best practice is not being used.

Aaron, unless some miracle happens, will continue to lose the precious skills we have all worked so hard to create.

The staff does not have the training or resources to be able to replicate the school programs Aaron and the other “clients” experienced. They could go and see these programs in action. Aaron’s High School teacher has repeatedly invited Aaron’s staff to visit and the school is only a couple miles away.

Tom and I both concluded this particular program was not going to work for Aaron.

We talked about just bringing Aaron home, me volunteering every day in the center (but they wouldn’t listen to me if I was there). So, what to do?

Dejectedly, we called our care coordinator to schedule another visit to yet another center… and then good news.

The care coordinator talked to the director of another program where Aaron would receive a one-on-one staff person for 3 days a week. A Reprieve. A bit of Hope.

If you are concerned about your child’s, or your own quality of life, look at the activities, people, and rooms in your lives. Maybe the ecological assessment, Life Space Analysis would help.

Speak Your Mind: Please leave your ideas in the comments.

Do you think the Life Space Analysis tool would be useful for people with autism and/or developmental disabilites?

Would it (or the 168 hours book) be useful for your own life?

Can you see the difference between having a life with too much to do, contrasted with a life with days and days of nothing to do?

Can we just sit and watch our children lose skills and deteriorate as adults?

Can we be satisfied with our own lives if we just sit and do nothing?

Keep Climbing: Onward and Upward

All my best,

Mary

Brown, L., Shiraga, B., York, J., Zanella, K. & Rogan, P. (1984). A Life Space Analysis Strategy for Students with Severe Intellectual Disabilities. L.Brown, M. Sweet, B. Shiraga, J. York, K. Zanella, P. Rogan & R. Loomis (Eds). Educational Programs for Students with Severe Handicaps, Vol XIV. Madison: MMSD.

And the difference is…

The Life Space Analysis for Aaron would show there is little for Aaron to do, few people to be with, no expectations that things could be better in his life and the life of people with severe disabilities who were in this center.

photo credit: nursing pins

Nursing and Caring during WWII

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

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

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

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

Nursing and Caring in 2010

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

Everything was Impersonal

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

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

Games of Caring

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

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

Always the Advocate

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

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

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

Going from Nurse to Patient to Nurse

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

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

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

The Human Story Makes the Difference

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

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

Share YOUR Story:

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

Keep Climbing: Onward and Upward,
All the best,

Mary

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

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

Last year on 09-09-09 it was my 60th birthday.

In the picture above, you see Baby Isabella playing in the leaves for the first time–another miracle from last year. There is nothing more magical than watching her learn and explore new things. She swings and colors and plays on the piano…and, drops to the floor when she doesn’t want to do something (hey, that’s part of growing up too). Today I saw her knock on the door and I swear I heard her say, “Who’s There?”

But my absolute favorite moment with Isabella is when I walk into the room and she squeals and runs into my arms. It just doesn’t get any better than that.

Today on 10-10-10 I’m wishing you all a year filled with blessings.

I am so thankful to each of you for helping me launch this blog–It is now three months old and at this time last year was just a dream.

For this coming year, I wish each of you a loved one who squeals and runs into your arms.

Let’s see what wonders there will be by 11-11-11 next year?

Comments: Time to Brag, Dream and Put it in writing:

What are your dreams and goals to be completed by 11-11-11? What have you completed since 09-09-09?
Share a little about yourself and maybe we can help each other reach those dreams.

Day 18 of our Chris Brogan’s Every-Day-For-30-Days Blogging Challenge Follow us on Twitter #CB30BC
Alison Golden of The Secret Life of a Warrior Woman is my partner in this challenge: (click here to check out her new post.)

photo credit: U.S. Army Garrison – Miami

So‐called “friendly fire”, sometimes termed fratricide or amicicide, is officially defined by the U.S. Army as “the employment of friendly weapons … which results in unforeseen and unintentional death or injury to friendly personnel.” (Wikipedia)

Yesterday I was sitting at my computer when the security system began flashing red alerts saying it found 2 then 6 then 15 viruses which ranged from strong to critical. I was just sitting there watching helplessly. Immediately I turned the machine off and called for help. Thankfully 24 hours later, I’m typing from another computer and a good friend is taking precautions so this never happens again. Turns out the virus attack was so nasty it even dismantled my computer’s security system. Some unknown enemy snuck up and damaged something that was important to me. No one was hurt, my friend thinks he can fix it. So, C’est la vie!

I can handle those kinds of anonymous attacks. What happened next was more upsetting.

When my computer life resumed, I checked my email messages. For the second time in one day, I felt I had been caught in an ambush. But this time the attack was coming from people I know and care about. People who are supposed to be helping us–friendly fire.

(edited to protect confidentiality)

From: Aaron’s Support Coordinator
Sent: Wednesday, October 06, 2010 1:53 PM
To: Mary Ulrich
Subject: Aaron’s house

Hello Mary,

This is the e-mail that you have been dreading. For years, Support Coordinators have put out e-mails about potential roommate matches, visits, etc.

Previously I have been able to say that Aaron and (his roommate) are not out of their (funding) ranges and guardians/parents are not interested in roommates, and they stop contacting me.

Apparently, per direction by (the director), we are in a financial place that we can no longer have the luxury of choosing not to move forward with roommate visits. I was told that I am to contact you and (Aaron’s roommate’s) guardian to set up a roommate visit for (his house). We have someone receiving a waiver and he needs a home in which to live. (Aaron’s house) is definitely considered a 3 or 4 bedroom home, so we have to consider (it) as an option.

Please contact me or (the director) with any questions or concerns that you may have.
Thanks, Mary.

Signed (Support Coordinator)

An Unsteady Peace

When my computer gets fixed, I’ll see if I can find the letters and presentation Tom and I made to the county board about this issue two years ago. Tom and I thought this was settled. Aaron has lived in his own place for over ten years. I worked for a year to make sure Aaron and his roommate had the funding levels in their Medicaid Waivers to sustain the staff they needed. I worked for another year to figure out the HUD Rent Subsidy Program. (On both, I’m proud to say Aaron was one of the first in Ohio.) The fact my computer is inaccessible and I can’t even retrieve my previous correspondence makes me feel even more vulnerable. Last time we explained in great detail how adding additional roommates “which results in unforeseen and unintentional death or injury to friendly personnel” –okay, death is too harsh, but the “unintentional injury” and a diminished quality of life would surely apply. The one staff person who has been with us for 7 years says she will quit the minute another “client” is added to the house. The complications go on and on.

Aaron’s residential situation is being held together with scotch tape and spit as it is. To add one or two more people to his living situation is a disaster in the making (everyone agrees with this).

Amicicide

At least, our advocacy efforts last time delayed it a year or so. But now it is back—in our face. It hurts deeply that we cannot trust the people in positions of power. Their best interests are not the same as ours. We have worked with the county board for probably 25 years. I was on the board for 6 years and have friends there. Our support coordinator is a dear friend who has seen us through many disasters in the past 15 years we have worked with her. The Director is also a dear friend. So these are good people who I love. I appreciate their budget issues.

But, if I don’t speak up for Aaron’s interests who will? Plus, Aaron’s roommate’s parents are 87 years old and his mother has intense medical issues. Plus, this must have happened pretty quickly because we saw our Support Coordinator at a meeting on Monday and she didn’t say anything. I’m not sure what happened in those two days since. Plus, plus, plus….

Battle Plans

I haven’t decided the exact plan of action. This is such a surprise attack I’ll have to get over my shock, disappointment and anger before I can take a step forward. But it’s time to put the battle fatiques back on and geer up for battle. Again.

Last time when we were attacked, we resolved it. This time the enemy (our friends) know our game plan and strategy.

Further, when Tom and I are in the nursing home and unable to stop them, we know the assault will again happen. So do we just accept the inevitable? Is this a battle we cannot win?

In Disability Scoop there was an article titled: Autism Moms Have Stress Similar to Combat Soldiers (click here). “Mothers of adolescents and adults with autism experience chronic stress comparable to combat soldiers…” The author’s research points out that when physical hormone levels and chronic stress levels were measured, they were similar to those of combat soldiers.

No surprise there. And I would give this email as proof of the reasons. Surprise Attacks, Friendly Fire… It’s like this violated our peace treaty. A bomb that dropped from the sky during the night. And, from those we trusted and depend upon to look out for Aaron’s best interests. From those in the “helping profession.”

Thoughts?

Do you have an extra bedroom in your house? There are lots of homeless people around. Since people don’t want to pay more taxes, what if we just choose someone to live in your house?

More to come:
Keep Climbing: Onward and Upward.

All my best,

Mary

Day 16 of our Chris Brogan’s Every-Day-For-30-Days Blogging Challenge Follow us on Twitter #CB30BC
Alison Golden of The Secret Life of a Warrior Woman is my partner in this challenge: (click here to check out her new post.)

Playing for Change

What I loved about this video is that musicians from all over the world are playing the same song. Giving the same message. Gritty to sophisticated, washboards to violins–it’s the same song and message.

Kind of like all the people who believe in inclusion are playing the same song and giving the same message.

Kind of like all the people around the world who are working to make the world an inclusive place for ALL people, including people with disabilities.

The Inclusion Network

Check out The Inclusion Network (click here) hosted by Jack Pearpoint. There are many friends there from TASH, Arc, and advocacy days-gone-by who have stood by me and other parents of people with severe disabilities. Just a few are: John O’Brien, Connie Lyle O’Brien, Barb McKenzie, John McKnight… and Gail Jacobs, who shared the above video.

Standing with One Person–and Many

Our 35 year journey toward Inclusion has been long and hard. And when we look at Aaron’s current life, we don’t seem to have made much progress. We’ve done three MAPS and person-centered-plans but they just ended up in Aaron’s chart with a bureaucratic check-mark that they were completed.

We continue to do all the right planning, we take the right risks, we fight like the devil to get good programs, we attend countless meetings, join the right groups, and work with strong visionaries to build a better world for all people with severe disabilities. But it’s not enough.

The journey continues with every breath we have in this life but unless Aaron dies before we do, we need to plan for an extended journey that continues indefinitely after we are gone. We make our choices and face our battles: the big ones, the little ones… we accept the compromises we have to make to survive. We keep believing. There is no other choice.

We stand on the shoulders of the parents, self-advocates, caregivers, teachers and advocates who came before us and bought our opportunities with their sweat and blood. We continue their work. We attempt to build a inclusive community which has never existed in the history of the world…and then we will pass on this legacy to the next generation.

When all is said and done, we can hold our heads high and shout to the world, “We stood together for Inclusion.”

Our family stands for Aaron in our community. Across the world others, in their own way, in their own community, with their own child, or friend, are also standing for Inclusion.

And each day, we touch the life of one person–and many. We make things a little better than they would have been without our work for our one person–and many. And that gives us hope and is our life work.

So thank you dear friends. Thank you, also, to all the people who are reading this who I have never met but who are working for an inclusive world where everyone belongs.

Thank you for standing by me. Thank you for standing by Aaron. Thank you for standing by all of us. God Bless.

Add your voice in the comments:

Who are the people who stand by you?

Keep Climbing: Onward and Upward

All my love and gratitude,

Mary

Day 12 of our Chris Brogan Every-Day-For-30-Days Blogging Challenge Follow us on Twitter #CB30BC

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

photo credit: jpellgen

This anonymous story is titled simply, “Teacher”.

I’ve read this many times and always think it is powerful. We don’t tell others often enough what makes them special, why they are important to us, why we love them. Likewise, we don’t hear from others why we are special.

Hope you can use this in your work and life. I think any group leader could adapt it for children or adults.

Comments:

The fact that you read my blog makes me love you. And since you are a chosen few, it proves you are unique:)

What makes you special? How have others told you or showed you they loved and cherished your unique gifts?

Would this be different for people with disabilities? How do people who don’t talk with words tell you they love you?

Could you use this activity? Like this story?

Please share you thoughts.

Keep Climbing: Onward and Upward.

All my best wishes,

Mary

One day a teacher asked her students to list the names of the other students in the room on two sheets of paper, leaving a space between each name. Then she told them to think of the nicest thing they could say about each of their classmates and write it down. It took the remainder of the class period to finish their assignment, and as the students left the room, each one handed in the papers.

That Saturday, the teacher wrote down the name of each student on a separate sheet of paper, and listed what everyone else had said about that individual.

On Monday she gave each student his or her list. Before long, the entire class was smiling. “Really?” she heard whispered. “I never knew that I meant anything to anyone?” and “I didn’t know others liked me so much,” were most of the comments.

No one ever mentioned those papers in class again. The teacher never knew if the students discussed them after class or with their parents but it didn’t matter. The exercise had accomplished its purpose. The students were happy with themselves and one another.

That class of students moved on. Several years later, one of the students was killed in the Middle East and this teacher attended the funeral of her former student. She had never seen a soldier in a military coffin before. Her student looked so beautiful, so mature.

The church was packed with the student’s friends. One by one those who loved the soldier took a last walk by the coffin. The teacher was the last one to bless the coffin. As she stood there, one of the soldiers who acted as pallbearer came up to her.

“Were you Tyler’s math teacher? He asked. She nodded, “Yes.”
Then he said, “Tyler talked about you a lot.”

After the funeral, most of Tyler’s former classmates went together to a luncheon. Tyler’s mother and father were there waiting to speak with the teacher. “We want to show you something,” the father said, taking a wallet out of his pocket. “They found this on Tyler when she was killed. We thought you might recognize it.”

Opening the billfold, the father carefully removed two worn pieces of notebook paper that had obviously been taped, folded and refolded many times. The teacher knew without looking that the papers were the ones on which she had listed all the good things each of Tyler’s classmates had said about her.

“Thank you so much for doing that,” Tyler’s mother said. “As you can see, Tyler treasured it.”

All of Tyler’s former class mates started to gather around. Charlene smiled rather sheepishly and said, “My list is in the top drawer of my desk, when I have a hard day I look at it.”

Mark’s wife said, “Mark asked me to put his in our wedding album.”

Then Vicki, another classmate, reached into her purse, took out her wallet and showed her worn and frazzled list to the group. “I carry this with me at all times,” Vicki said and without batting an eyelash, she continued, “I think we all saved our lists.”

That’s when the teacher finally sat down and cried. She cried for Tyler and for all her friends who would never see her again. She cried for all students she had ever had in class. The ones she knew did well, the ones who struggled, the ones who she could never figure out. She also thanked God for the inspiration to do an activity that was so simple yet obviously touched her student’s lives.

The density of people in society is so thick that we forget that life will end one day. And we don’t know when that one day will be. As teachers we work hard, we give our best, and every once in a while we are inspired.

So please think about your future as a teacher. Dream big. You will be in an awesome position to impact your students for a lifetime. Remember, you reap what you sow, what you put into the lives of others comes back into your own.

(Author unknown)

Love–NOT Labels

With families, “Love” is all that matters–no matter what, unconditionally.

The love we feel for our child, our baby, our sister, brother, son, daughter can never be replaced by a medical or psychological term some professional puts on a chart. So in isolation, it shouldn’t matter if the diagnostic label is “retarded” or “intellectual disability.”

As we spoke about in the post Circle of Life (click here) each person and family is part of a much larger system and what affects one part of the system affects all the parts of the system.

And that is where the chosen word and label does matter–big time.

Yesterday in the related post, “Retarded”–no more (click here) I briefly wrote about Rosa’s Law and showed one of the press releases/alerts sent by parents and advocacy groups to change the words, “retarded” to “intellectual disability.” Some of these advocates are professionals who make their living working with people with disabilities. But like most of the legislation of the last 60 years, Rosa’s Law came about through the vision and hard work of families.

If you want more information on what parents have accomplished visit Parallels in Time I (click here) and II (click here)

I was going to summarize Senator Mikulski’s Statement on the Introduction of Rosa’s Law (below) but since her words still make me cry, I figured you’d want to see the “primary research document”. Especially check out Nick Marcellino’s comments. And get the Kleenex handy.

This is just one family who went to one more meeting, talked with one more politician–but this time, with a lot of hard work and uniting allies, they changed the system. Maybe it is just a small step in the scheme of things. There are still thousands of people with intellectual disabilities and their families who do not have the services they need. But, this small step gives us all hope that our democratic system works. An individual can make a difference.

It amazes me that in an election year when politicians can’t agree on anything, they unanimously voted for this law. That alone makes it memorable.

Comments Please:

What do you think about Rosa and her family? Have you ever been an advocate for change? How, When, Why? How did it feel?

How is this press release different than the one in Retarded–no more?

Keep Climbing: Onward and Upward

All the best,

Mary

Rosa Marcellino and her family

FOR IMMEDIATE RELEASE:
17-Nov-2009 CONTACT: Press Office
202-228-1122

Senator Mikulski’s Statement on Introduction of Rosa’s Law

WASHINGTON, D.C. – U.S. Senator Barbara A. Mikulski today introduced Rosa’s Law, a bill that will eliminate the terms “mental retardation” and “mentally retarded” from the federal law books. U.S. Senator Michael B. Enzi (R-Wyo.), Ranking Member of the Health, Education, Labor and Pensions Committee, is the Republican sponsor of the bill.

Senator Mikulski’s statement as delivered on the Senate floor follows:

“Today I rise to introduce legislation that I’m calling Rosa’s Law. This bill began by listening to the people in my own state. It began when a mother told me a compelling story about her own daughter, her family’s efforts to give her daughter an opportunity for an education and to be treated with respect and with dignity. And at the same time, it began with the advocacy of not only she and her husband, but of her entire family, including her 14 year old son Nick who testified at the Maryland General Assembly.

“As a result of their effort, I’m introducing Rosa’s Law. Before I say more about the bill, I want to tell you about the family. I want to tell you about the Marcellinos, Joseph and Nina who are parents to four children – Nick, Madeleine, Gigi and Rosa. They’re in the gallery now watching this and I wish you could have been with me in my office as I met with the parents and talked with the family.

“Last year, at a roundtable on special education, I met Nina Marcellino for the first time. She told me about her daughter Rosa who was labeled at her school some years ago as mentally retarded. She told me about the stigma, the pain, and the anguish it caused both Nina and her husband, Rosa’s brother and sisters as well as the Rosa herself.

Nina and Joseph reached out to their local disability advocacy organization, The Arc, to see what could be done to change the law. They then reached out to a member of the Maryland General Assembly, a wonderful Representative named Ted Sophocleus. He introduced legislation in the General Assembly that would change the word ‘mentally retarded’ and substitute it with the phrase ‘an individual with an intellectual disability.’

“That’s why I stand on the Senate floor today to introduce, at the request of the family, a law on behalf of this little girl and on behalf of all of the children of the United States of America who are labeled, stigmatized and bear a burden the rest of their lives because of the language we use in the law books.

“My law changes the phrase ‘mentally retarded’ to ‘an individual with an intellectual disability’ We did this in health, education and labor policy without in any way negatively impinging upon either the educational or other benefits that these children are entitled to.

“When it came time to bring the bill before the General Assembly, the family was there. And who spoke up for Rosa? Well, her mom and dad had been speaking up for her. Her brother Nick and sisters Madeline and Gigi had been speaking up for her. This wonderful young boy, Nick, at the time 13, this is what he said to the Maryland General Assembly,

‘What you call people is how you treat them. What you call my sister is how you will treat her. If you believe she’s ‘retarded’ it invites taunting, stigma. It invites bullying and it also invites the slammed doors of being treated with respect and dignity.’

“Nick’s words were far more eloquent that day than mine are today. I want to salute Nick for standing up for his sister, but I think we need to stand up for all because in changing the language, we believe that it will be start of new attitudes towards people with intellectual disabilities. Hopefully, people will associate new words with the very able and valuable people that go to school, work, play soccer or live next door.

“Eunice Shriver believed in this when she created the Special Olympics. She knew that special needs children need special attention but they can do very special things, and look what she started. I had the opportunity to talk to Rosa’s mom Nina while this bill was under consideration by the Maryland General Assembly. I promised her then that if that bill passed the Maryland legislature, I would bring it to the floor of the United States Senate.

“Well, it passed unanimously. Governor O’Malley has signed it and today I stand before you introducing the legislation. It makes nominal changes to policy in federal education, health and labor law. It simply substitutes ‘intellectual disability’ for ‘mental retardation.’ This bill will neither expand nor diminish services, rights or educational opportunities. We vetted it with legal counsel. We reached out to the very wonderful advocacy groups in this field and they concur that this legislation would be acceptable.

“This is not the first time we’ve updated this terminology. Our laws once referred to boys and girls as ‘feeble minded.’ We thought we were being advanced when we changed it to ‘mentally retarded’ in the 1960s. Now, 40 years later, let’s take another big step and change it to ‘intellectual disability.’

“This bill makes language used in the federal government consistent. The President’s Committee on Mental Retardation was changed by executive order so it is now the Committee on Individuals with Intellectual Disabilities. The CDC uses ‘intellectual disability,’ the World Health Organization uses ‘intellectual disability,’ so my law makes the language consistent within the federal government.

“I’ve always said that the best ideas come from the people. Rosa’s Law is the perfect example of effective citizen advocacy. A family that pulled together for their own and in pulling together they’re pulling us all along to a new way of thinking. I want to recognize the Marcellino family who is with me in the gallery and the namesake of the law Rosa’s Law pictured behind me. She is also up there today.

“I also want to take the opportunity to thank my colleagues. It was indeed an honor to represent this family. I believe that in our country people have the right to be heard and that we should listen. They have a right to be represented, which I’ve tried to do. And now, let’s try to change the law.

“It was a pleasure to work with Senators Harkin and Enzi, the Chair and Ranking Member of the HELP Committee. I have their wholehearted support. This is going to be a nonpartisan bill. We’re going to check our party hats at the door and move ahead and tip our hat to these boys and girls.

“This bill is driven by a passion for social justice and a compassion for the human condition. We’ve done a lot to come out of the dark ages of institutionalization and exclusion when it comes to people with intellectual disabilities. I urge my colleagues to join me in a step further. Help sponsor the legislation that I offer on a bipartisan basis. Help me pass the law and know that each and every one of us makes a difference. When we work together, we can make change.”

Week 2. Day 9 of our Chris Brogan Every-Day-For-30-Days Blogging Challenge

Smokey the Bear and Aaron

This year, Smokey the Bear celebrates his 65th birthday.

Last weekend, as our family was trying to keep our house available to prospective buyers, we took a road-trip to Clifty Falls State Park in Indiana. (click here for related post)

Between the community room and the dining room we caught up with the “Only YOU can prevent forest fires” celebrity in this bigger-than-life woodcarving of Smokey the Bear.

It is hard to know what Aaron knows and doesn’t know, but he went to check out Smokey and it reminded me of one of the most amazing moments in Aaron’s and all of our lives.

Escalante, Utah

Around 1991 Aaron was about 16 years old and Tommy 14. We were driving from Escalante National Monument on one of our famous/infamous summer vacations. Check out America the Beautiful for another of our trips (click here).

We had just fixed breakfast on our trusty Coleman stove, packed up the camper and were traveling on All American Hwy 12 to meet my sister in Moab, Utah. It was ferocious hot.

This area is so remote, it could have its picture next to the word in the dictionary. Think canyons, dust, dirt, and sky. We stopped at the traffic light in this one red-light town of Escalante.

Suddenly, a police car pulls up in front of us and blocks our car. Then, as only can happen in a small town, a full blown parade starts up the street. We thought it was hysterical but figured the kids would enjoy it, so we got out of our car and joined others who were gathering on the sidewalk.

The parade certainly wasn’t because we rolled into town, but whatever the occasion the hometown parade had the Boy Scouts, a hay wagon full of kids, fire trucks, the High School Marching Band …. There was even a vehicle from the nearby National Park.

We were watching all the excitement when, low and behold, a six foot Smokey the Bear mascot surprised us. Smokey shakes Tommy’s hand, turns and reaches for Aaron’s hand.

“Who are you?”

In a voice as clear as the mountain sky, Aaron says, “Who are you?”

Now, we all know Smokey is also non-verbal. But he laughed, gave Aaron a hug and moved on to the other kids.

Tom, Tommy and I were gobsmacked that Aaron had talked. “Who are you?” clear as a bell, I’m talking Big Ben kind of ring.

Now, unless you understand how amazing it was for Aaron to say this sentence, you wouldn’t know why–25 years later–this is still a transformational moment and one of the most significant memories of my life.

Remember, the psychologists tested Aaron and pronounced he had an IQ of about minus 15 and a vocabulary of “ball, bus, shoe” and mostly echolalic phrases like: “You Okay?” “Ready, set, go” over and over and over and over. Plus, according to the definition of autism, Aaron is not supposed to be able to pretend, to see things from another’s point of view….

So for Aaron to spontaneously ask, “Who are you?” means he was smarter than we ever guessed.

1. Aaron’s certainly seen characters in costume at King’s Island park, Halloween…. He knew someone was inside this big furry costume.

2. Aaron’s surprise and curiosity somehow bypassed his usual communication block or aphasia or whatever stops him.

3. A Question is a higher form of intelligence and verbal communication.

4. Since his pronunciation and delivery was perfect, his problems are NOT that he couldn’t produce the sounds or words. So for all those years of speech therapy we were on the wrong track to get him to practice saying, “ssss” and “rrrrrr”.

So, with no prompts, no year of therapy identifying a “Smokey Bear picture” and practicing his “wwww” sounds to then build those smallest phonemes into the word “who”… Aaron just looks at Smokey and asks, “Who are you?”

I’m not sure I can explain how this affected how we looked at Aaron’s intelligence and communication skills. I’m not sure I can even explain the impact of the experience. But it does keep me awake nights with other questions like,

What other mysteries can Aaron tell us about who he is and this thing named autism?

Why could Aaron never again say those words? Never.

In Aaron’s whole life, we’ve only had a similar experience one other time. For the curious, it was when a police officer pulled me over for speeding and Aaron looked at the officer and said, “Uh, oh”.

Still cracks me up and took the sting out of the ticket… but that’s another story.

Joke

Aaron carries playing cards around with him. He licks them (like in picture), shuffles them, counts them… They are another way he can calm himself. I debated using this picture. I want you to like Aaron and it is risky to show him doing something others would perceive as bizarre. Licking cards is not normal. But, it is a step up from biting his hand and one of my goals of this blog is to tell it like it is, so here’s his picture. I was looking at this picture when the old kindergarten teacher in me thought this would make a great joke.

I imagine Aaron asking, “What is Smokey the Bear’s favorite card game? (answer in the comments)

Tricky eh, I want you to go to the comments and tell us one of your stories about Smokey the Bear? A joke? What experiences have you had with spontaneous communication, vacations?

Keep Climbing: Onward and Upward.

All the Best,

Mary

Check out my challenge partner Alison Golden of The Secret Life of a Warrior Woman: (click here)

Day 8 of our Chris Brogan Every-Day-for-30-Days Blogging Challenge

The Realtor had two showings for Sunday, so we figured the best way to see Aaron and keep a clean house (see related post) was to go for a Fall vacation.

Aaron, Tom and I made our get-away-from-moving trip was to Clifty Falls State Park in Indiana. The weather was perfect, the ride up the Ohio was perfect, Aaron was perfect. Whew!

When your child has a severe disability and doesn’t talk with words, you look for ways to measure his happiness and enjoyment by other non-verbal signs.

Over the years, Tom and I have decided it is by the number of times Aaron crosses his leg.

I caught two on film (do they still call digital, film?)

Check it out:

NOTE: I’m congratulating myself for figuring out how to download, edit and post my pics in under two hours. I’m a slow learner, but I’m learning. Now, with another hour or so, I might be able to figure out how to put the pictures side-by-side. Or not?

More about the trip tomorrow in Smokey the Bear and Aaron.

Keep Climbing: Onward and Upward.

All the Best,
Mary

Check out my challenge partner Alison Golden of The Secret Life of a Warrior Woman: (click here)

Comments:
Where do you like to go to get away?
How do your children communicate without words?

Day 7 of our Chris Brogan Every-Day-for-30-Days Blogging Challenge Follow us on Twitter #CB30BC

photo credit: 2KoP

Last week I stopped at a tiny produce stand at the edge of a corn field (Ohio). It sold an unusual assortment of fruits, vegetables, bakery goods, crafts….

Grandpa Farmer said the corn was picked this morning from his field but the other things were from all over. The blackberries and peaches were part of a cooperative exchange with a family farm in Georgia–local truckers just added his shipment to their usual transport loads and made an extra stop at the farm in the towns they passed. He said he also barters an exchange of his corn and melons for fresh baked goods from a local restaurant (Der Dutchman).

What I thought was remarkable was that even in 2010 and the days of social media and networking, these family farmers were still exchanging goods and services the old fashioned way. Their B-to-B (business to business) offline business model was still built on personal relationships and trust. Getting fresh products to individual customers. Going the extra mile, literally.

Community Inclusion

There were about five shoppers there at the time I was there. None of us knew each other, none of us really even gave each other eye contact. But, we all probably lived within a short distance of each other.

In older times this would have been an important social time to exchange family and community news. This face-to-face exchange also made it easier for people with disabilities to be included in the community. It took people with all sorts of skills to work at the farm and stores, and they were each a person connected to families and neighbors–not just strange strangers.

Other than my questions, there was no conversation other than Grandpa Farmer asking us to “pay with the smallest bills possible.”

But while this was typical B-to-C (business to consumer) social behavior for 2010, considering the centuries old social and business exchange model of corn for blackberries, corn for snickerdoodle cookies, I was feeling nostalgic and wishing for the past face-to-face friendly social interactions of an ancient marketsquare and a community where people actually knew and cared about each other.

Seth Godin, the marketing and social media guru wrote a book called Linchpin: Are you indespensable? (Penguin, 2010) about the power of one person to make a difference, be remarkable.

If this farmer really understood this, he could have been the Linchpin, he could have made shopping at the produce stand a different experience than shopping at the large superstore where the produce looks great but there are no plows, wagons or rows of corn anywhere in sight. He missed his opportunity to build relationships and make his customers loyal friends instead of just people who were asked to pay with small bills.

So I guess my takeaway is that online or offline, the way we communicate and build our business model, deliver products, interact with our neighbors and customers can be personal or impersonal. The method of delivery, the social media is not what makes the difference.

PEOPLE MAKE THE DIFFERENCE.

The Aaron difference

Most people say my son Aaron, who has the label of autism has few social skills. In fact, some experts would say people with autism cannot even have social interactions, that is the definition of autism. But I’d be willing to bet if Aaron had been with me, while we were at the produce stand he would have sang, “Old McDonald” a hundred times and gotten everyone there to join in. Everyone there would be smiling by the time they left. Aaron would have given them a personal and memorable experience. Aaron would have been the Linchpin. He would have made sure everyone connected.

Comments Please:

Who are the Linchpins in your life? Who is so indispensable that your life would be different without them?

Keep Climbing: Onward and Upward.

All the best,

Mary

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In case you missed it:

Day 1: “Every Day for 30 Days” Blogging Challenge or “IBP” (Individual Blogging Plan) Day 1 of the 30-Day-Every-Day Blogging challenge. (click here)

Day 2: Memory Rocks: not being objective (click here).

Day 3: Turning it over to the professionals (click here)

Day 4: An Avalanche and an Aaron story (click here)

Day 5: “The Host” vs. the Home Stagers vs. Aaron (click here)

Day 6: “There is no spoon?” Disability Style (click here)

Check out what my challenge partner Alison Golden of The Secret Life of a Warrior Woman: