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

Dr. Lou Brown

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?

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 a 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, and specials like gym, art, and 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 for a long time and had expectations that he grow and learn, and there were many rooms–spaces in the school, home, and 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 was 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 50 years, everything we have learned about people with autism and severe disabilities in special education programs, and the research of best practice are 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 of miles away.

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

We talked about just bringing Aaron home, and 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 disabilities?

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.

“Disability,” “Handicapped,” Aimee Mullins and survival of the fittest.

Aimee Mullins Rocks

 

Aimee Mullins at the TED conference

Is that a WOW or What?

TED is for the “thought leaders” of our generation. I’m so glad Aimee Mullins stood up in front of the world and talked about the words we use, the way we tell stories, our prejudices about people with disabilities and our ability to change and influence lives.

I’m thrilled she is beautiful, an accomplished athlete, and can deliver a message with the best communicators in the world. Chalk one up for our side. Aimee you did us proud.

Language

I was really struck by the definitions. Yes, even in 2010 the words “disability” and “handicap” carry such derogatory connotations. Every time I hear the traffic report and they say, “there’s a disabled blocking the west lane” I just cringe.

I recently spent some time looking up the words: “retarded, moron, idiot and imbecile” and their histories (click here for related article).

Aimee talking about the negative effect these labels would have made on her when she was a young child was sobering. (See related article on the difference between handicap and disability.)

I particularly liked Aimee’s references to Darwin. Our ability to adapt, change, and transform determines the “survival of the fittest”.

Inclusion is our “survival of the fittest.”

This is why I believe in inclusion I agree it means the difference between survival and a decent quality of life. (related article).

Inclusion is about adapting, changing and transforming. It is about blending into the normal population the same way animals learn to camouflage themselves into their environments

The medical doctor saying that she was an example of the “X” factor was my takeaway moment.

WE ARE THE X FACTOR.

If you are interested in my take on the differences between the label of “disability” and “handicapped” (click here). I would love to be able to pass this information on to Aimee. Perhaps it might help.

Come Dance With Me: Share your thoughts.

Were there any new ideas? Which of Aimee’s stories did you think were the most powerful? Do you have any stories about Medical or Educational professionals? What message would you want to send to Aimee? To her parents? To the medical professionals? If you had a chance to be a thought leader, what would you talk about?

Keep Climbing: Onward and Upward

All my best, Mary

America the Beautiful| Through the Autism Car Window

Hi Everyone. Are you getting ready for a vacation? I thought you might like to read about the family trip that changed our lives.

Sitting on the top of the world

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 Aaron has autism.

Preparing for the trip

Aaron didn’t start walking until he was five, and 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 rainstorms, 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 challenges we knew would come. We would enjoy our family time and see the beauty of America. Fortunately, instead of mud and rock trails we had interstate roads and could travel at 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 knew 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 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 or disruptive 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 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, and 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 lifeguard 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 into 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 Apple Seeds

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 would nurture and see bear fruit. Perhaps a future Kodak moment for our country will include not only the beautiful American landscapes but also 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 approached us and said Aaron needed to be quiet or leave. Tom began to go when another tourist came running from across the room. He looked the guard 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 wondered if it was worth it. Would we ever take another road trip? But like always, our children showed us the way. As Tommy ran into the house to be the first person in the bathroom, he called over his shoulder, “Next year I want to go to Florida!”

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

Keep Climbing: Onward and Upward

All the best,
Mary

Copyright Ulrich 2000-2024
Original Work do not copy without Permission

“Superstar Dads”| Changing the World

My Superstars

Happy Father’s Day Dad!

“Anyone can be a Father, but only someone special can be a Dad.” (anon.)

“Love is that condition in which the happiness of another person is essential to your own.” (Heinlein, Stranger in a Strange Land, 1961.)

What is a Father’s “unconditional love”?

Many people have trouble explaining “unconditional love” and “fathers.”

I remember one Hallmark commercial where an older dad said he really only understood a father’s love when he saw his son holding his new baby–his grandchild. We were fortunate to see our son, Tommy with his new daughter. That is one amazing moment that made our hearts burst with love and pride.

But when I think of my husband Tom, and the harder love, the real unconditional love, it is when he is with Aaron, our oldest son who has the label of autism, intellectual and developmental disabilities.

Love is in the details, not the traditional big events like a new grandchild. It is in the demanding-ordinary-daily-love Tom pours into making Aaron’s life “normal” and “special” at the same time. Doing things that have to be done, when you would rather do other things.

Here is today’s example:

Dad picked up Aaron at his house at 8:30 AM today. The caregivers are going to a family reunion, so we want to give them some additional time off. After checking on his meds, asking about his toileting, Dad talked to the caregivers about our recent visit to Aaron’s medical doctor. Tom tells the staff, “Yes, you have to get the prescription filled.” And “Yes, this is now Saturday and we went to the doctor on Monday. What’s the problem?”
Tom then brings Aaron home to our house, takes him to the bathroom, cuts his fingernails, throws in some laundry (I’m still recovering from my surgery) and after an hour takes Aaron to get a haircut, go to the grocery and treat Aaron to a hamburger. Mom gets to stay home and hang out on the computer.

Later today we plan on taking Aaron swimming, and then seeing Tommy and his family to celebrate Father’s Day. We’ll take Aaron back to his house about 8:30 pm.

Dad is hoping to catch some of the US Open Golf Tournament on TV, but he fits that in between Aaron’s care.

Sure, as we celebrate Father’s Day, we’ll give Dad a couple of little presents. I’m sure our granddaughter will give him a big hug and card too. But the “Bagel Guillotine” slicer, some peanuts for the ballgame, and a new golf shirt will never be enough thanks for all the love and devotion Dad gives to his sons–every day.

Happy Father’s Day Dad! We love you unconditionally too.

Amplify the positive outliers

This week Seth Godin wrote an interesting post about creating change. He suggests that the easiest way is to “Amplify the positive outliers.” In other words, we don’t waste our time “extinguishing bad behaviors” and instead find “positive deviants,” positive examples of what we are trying to do, and then “give them a platform, a microphone, and public praise.” Seth says by focusing on our success stories and celebrating our superstars we will change our culture and strengthen our tribe.

In our Climbing Every Mountain community and other tribes of “inclusion” and “normalization,” we face daily examples of people promoting and building segregated schools for children with autism, segregated adult day programs, and even a new segregated “handicap-only” baseball field. These are downright depressing and steal our energy and spirit.

So let’s begin thinking of positive examples and naming our “positive deviants.” Most of the advocates and parents I know would like to be called a “positive deviant”—Yep, that fits our label system just fine. Maybe we should be pushing the psychologists to add that to the DSM, that might make better reading than saying parents are still stuck in the grief cycle, eh?

Enjoy this minute of thinking about “The Crazy Ones” who helped change the world. If I were going to make a video, I would start with the above picture of my husband Tom and Aaron, the kid with all the labels–including “son.”

Some of the other Superstars in our life who would be in my video are Dotty Foley, Ann Turnbull, Annie Bauer, Michael Valdini, Dennis Burger, Colleen Wieck, Lou Brown, Anne Donnellan, Ed Roberts, Bob Perske, Tommy and Ana Ulrich, Mary Ann Roncker, Debbie Wetzel, Patty McMahon, Madeline Will, Patty McGill Smith, Patti Hackett Hunter, Leanne Bowling, Alison Ford, and many others.

Join in the Fun

This post is dedicated to all the Superstar Dads out there who are changing the world.

In the comments, tell us: If you made a video of your “positive deviants” who would be your superstars? Not just dads, but parents, teachers, professionals, and self-advocates who you think have changed our world? Who are the people who have moved us from segregation and given us the dream of an inclusive life with our families and terrific dads?

Keep Climbing: Onward and Upward

All my best,
Mary

Related Posts:

Dad and our trip to Indiana

Parents and Advocates Never Give Up

Hope for Families

Ed Roberts| Be extraordinary

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