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?

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.

Kill the Turkeys! Life lessons for people with disabilities.

Today I learned the sad news, Dr. Lou Brown, from the University of Wisconsin–Madison has died. He taught us that “Pre- means never”, “functional curriculum” and testified in our court case that anything in the segregated handicapped-only school for people with severe disabilities could be portable and done in a public school. He made all the difference in our lives and helped change special education. 

 

Preschool turkey handprint

Aaron 3 yrs. old. Isn’t this cute, I’ll save it forever

Hand-Print Turkeys

The first time Aaron brought home a hand-print turkey he was 3 years old and I thought it was adorable.

HOWEVER

When Aaron was 25 years old and brought home the same hand-print turkey, I was livid.

Aaron 25 years old. Kill the Turkey!

What’s the difference? Same kid, same activity. Why is one turkey a treasure, another only fit for the garbage?

The difference is the educational and philosophical debate between “developmentally age-appropriate” and “chronologically age-appropriate” activities for people with autism and developmental disabilities.

In a previous post, I introduced Dr. Lou Brown’s ecological assessment tool the “Life Space Analysis” (click here) This planning tool for people with disabilities helps identify the when, where, who and what fills a person’s day and gives clues on a person’s quality of life–though this tool can be useful for all of us.

1970s: The Birth of Special Education

Back in the 70s when IDEA was passed and people with disabilities first got the right to go to public school, everyone was trying to figure out how people with disabilities learned? What were the appropriate activities and curriculum? If you want more information about this time period click here: Parallels in Time II.”

Dr. Lou Brown and his colleagues found adolescents and adults across the country playing with infant toys. The “what” in their Life Space Analysis consisted of meaningless activities repeated every day like coloring, stacking blocks, putting colored rings on tubes, playing with wooden puzzles, and generally keeping Fisher-Price in business. “Pre Means Never” is a short video with the main idea as only Lou can tell it.

The rationale was “these students were eternal children”. It didn’t make any difference what they did. There were no expectations. They had low IQs and were functioning at a preschool or early childhood developmental level. So teachers used materials and activities matching the student’s developmental levels. For example: If a person had an IQ of 50 and a developmental age of 5.2 (6 years and 2 months), then the person with the disability should do activities that matched what a normal 5.2 month old child would do. It didn’t matter if the “child” was actually 19 or 35, or 70 in chronological years.

2010: Adult Services

I have to admit, I thought the idea of developmental age was long dead. Aaron went to public school and had plans for his future as an adult (click here). He had a functional community-based curriculum, he had a transition plan, and he had work experience. Plus, the research in the whole field of special education and adult services, strongly supports the idea of chronologically age-appropriate activities.

So, again: What’s the Problem?

In my recent round of looking at adult daycare for people with disabilities and the elderly, I have been shocked out of my mind to find rooms with Fisher Price toys. I know the toys are indestructible, but come on. They are NOT AGE-Appropriate! If the toy package says ages 3-6, then if you are over 6 years old, it is not age-appropriate.

Schools vs. Adult Day Care

The difference between best practices in the schools and best practices in adult services is the fact that the staff and teachers are licensed. They have the training and have studied the research literature about best practices. They have done student teaching and got first-hand experiences under mentor teachers.

The people who run and work in the adult day care systems are lovely people who have high school diplomas (or GEDs) and because the job pays little more than minimum wage, they get no inservice, no vision of what CAN happen. They have the reality of too many people with disabilities, not enough help, and no training. So making preschool turkeys, or paper plate pilgrims make sense to them. The materials are cheap and the activity matches their developmental ages.

Thankful?

Being Thankful

I am thankful Aaron has someplace to go during the day. (Some states have nothing and the people sit at home.)

I am thankful these kind people don’t abuse and hurt Aaron.

I am thankful they take him to the bathroom, wipe up his messes, help him eat his lunch, and do their best.

But, they send home a paper plate bunny, toilet paper firecracker, macaroni Santa… And I am not thankful.

I don’t have an answer. I have tried to send in more age-appropriate materials and resources. I have tried to show alternative activities. And they are not thankful.

Comments:

What do you think? Is my age-appropriate rant just silly? What do you think I should do the next time Aaron brings home a preschool craft? Do you think the types of activities make a difference to people with disabilities?

If this makes sense and you want to spread the word, please retweet or link to Facebook. We have a whole lot of people to reach before the Christmas and holiday crafts begin.

I would be thankful.

Keep Climbing: Onward and Upward

All my best,

Mary

Brown, L., Branston, M., Hamre Nietupski, S., Pumpian, I., Certo, N. & Gruenewald, L. (1979). A Strategy for Developing Chronological Age Appropriate and Functional Curricular Content For Severely Handicapped Adolescents and Young Adults. Journal of Special Education, 13(1), 81 – 90.

A Mother’s Hopes for her Sons

Aaron watching Tommy play Nintendo

Aaron watching Tommy play Nintendo

Summer Activities| A Mother’s Hope for Her Sons with and without disabilities

NOTE: This is when Tommy was 13 and Aaron 14 years old.

Is summer different for kids with and without disabilities?

This summer Tommy, my 13 year old son, …

• Went to 2 weeks of Boy Scout camp, an experience which included a hike on the Appalachian Trail.

• Had to choose between participating in baseball or soccer. In August, however, he began training for the school cross-country team.

• Was active in a neighborhood network of five boys who decided to start a Nintendo Gaming Exchange Club. His friends called him the minute he arrived home from activities, played games until supper.

* Was invited to stay overnight with a friend or cousin.

• Had a season’s pass to a nearby amusement park, and because he can use public transportation independently, spent at least one day there each week with friends.

The days of summer flew by for Tommy. He had individual activities with friends, but also family activities which included a camping vacation and travel to a National Park. His major frustrations were either the lack of time for pursuing all of his interests, or his Mom’s suggesting he do something “dumb” like reading a book or practicing his clarinet.

Our family on a camping trip

Our Family Camping Trip

Tommy’s brother, Aaron, age 14.

Aaron went to two weeks of special camp this summer.

Aaron’s major summer/weekend/vacation activity is watching Tommy play baseball, play Nintendo games…and riding to drop Tommy and his friends off.

Aaron also has a pass to the amusement park, but can only go with an adult (who so far is his mother).

Aaron spends every morning saying, “bus, bus…ready, set, go.” When the school bus doesn’t come, he sometimes licks on the front window, bites his hands and puts on his coat and backpack. He can’t figure out why his routine is different.

Aaron also can’t figure out why we spend all winter telling him to keep the front door shut, and all summer telling him to keep the front door open (but that’s another story.) *smile*

Aaron was on the waiting list for a short Easter Seals sponsored program in August, the only other community recreation opportunity available to him in our county.

What’s the Difference?

As I contrast the lives of my two boys, I can’t help thinking…

• …perhaps I wouldn’t feel Aaron’s isolation and lack of contact with any friends or same-age peers if Tommy had fewer friends.

• …perhaps I wouldn’t worry about Aaron’s behaviors, physical condition, weight and stamina if he were occasionally an active participant, rather than always an observer.

• …perhaps the hours and hours of inaction would not occur if Aaron had better skills or could entertain himself.

• …perhaps our family will adjust eventually to the sadness (and stress) we feel knowing Aaron’s only opportunities come from mom, dad or brother…and realizing it may always be that way.

* …perhaps we would feel so trapped if we could get respite regularly.

* …perhaps we’ll become accustomed to wearing a key around our necks so that the door can be locked with a deadbolt every time someone goes out or comes in (otherwise Aaron will run into the street or enter neighbors’ homes).

* …perhaps we’ll resign ourselves to our community’s “special” camps and “special” recreation programs, which effectively exclude Aaron from almost everything that is typical, regular, easily available and low cost. Perhaps hope will sustain us that someday a “community support” agency professional from somewhere, anywhere, could adapt, modify and begin to open community activities for Aaron and others.

* …perhaps our prayer will be answered that some child around Aaron’s age will care enough to help him join a circle of friends. Just once, even once.

* …perhaps/…oh perhaps…some wonderful person will believe that a community is more that a group of houses, businesses and people. Agency professionals must become bridge builders in the community. Families in which a child has a disability need the same support regular families have.

Summary: Separate is inherently Unequal.

The tragedy of having a child with a disability has nothing to do with a syndrome, impairment or disease. Words such as autism, CP, and intellectual disabilities are just descriptors the same way hair color, height, race, sex and personality are descriptors. Children don’t start out life knowing they are different. The tragedy is the reaction of families, neighbors and society, which emphasize differences.

The conflict for people with disabilities and for their families comes when the community limits opportunities, segregates and restricts individuals’ choices (e.g. Handicap swim is Tuesday; 1:30-2:30 p.m. and General swim is Monday to Friday 8:00–5:00).

It doesn’t matter that the limiting of opportunities appears, to have a good rationale or charitable intentions. Segregation limits freedom, limits choices, and limits development. “Special” means segregated.

Our Olympic Moment of Inclusion

One hot July day last summer, Tommy and his friends stopped by our house to make some peanut butter and jelly sandwiches for a picnic.

Unexpectedly, one of the boys asked if Aaron wanted to come along.

Five minutes later, all the kids were laughing, talking and riding their bikes to the park. One red-haired kid named Aaron was riding on a bike in tandem.

In about one-half hour the picnic ended and they brought Aaron back; that was the highlight of Aaron’s whole summer.

That moment for Aaron was sort of like the experience of a serious ice skater. Olympic gymnast, actor, or musician who practices day after day hoping to “bring it all together” for one magic performance or “big break” It was a “victory” –a spontaneous, normalized recreation experience, without his mom! Ahhh (smile-sigh). And now…back to work. But, perhaps, just perhaps…those wonderful, typical neighborhood kids will grow up more fully with the vision for and the experi3nce of community integration and freedom. They are the next generation of soccer coaches, swim instructors, church/synagogue group and scout learners.

The change of inclusion has begun.

Related Stories: (Click on title)

On the last day of Junior High School.

Dream Plan for Aaron–14 yrs old (Part 2).

America the Beautiful: A Family Vacation Plus

Keep Climbing: Onward and Upward

“When we stop to lift one another up on the climb, we all reach a higher place.”
All my best,

Mary

Comment:

What were your summer vacations like? Would they have been different if you had a label of autism or disability? If you were a parent of a child with a disability what would you be thinking? dreaming? Are summers different for kids with and without disabilities? Can you think of anything you could do to help?

On the last day of Junior School| Inclusion

Aaron and Tommy on Cross Country Team

Aaron, Tommy and Cross Country Team

Tommy is in the second row. Of course, Aaron is the red head in the middle of the picture who refused to look at the camera.

My last post Teachers| Inclusion or Segregation started an interesting discussion. It reminded me of the letter I wrote to the Principal of Hopewell Junior School:

Letter to Principal on Last Day of Jr. High School

June 6, 1990

Principal, Hopewell Junior School
Lakota School District
West Chester, Ohio

Dear Dr. Taylor,

Recently my nephew, Robert, started laughing hysterically when I mentioned his cousin; Aaron was going to be on the school cross-country team. “What’s Aaron going to do? Bite and push all the kids at the starting line so he can win?”

I was deeply hurt but tried to explain it wasn’t all about the winning but the trying that was important. Robert was shocked! “But why would you even try if you knew you couldn’t win?”

Different Kinds of Winners and Losers

I explained there were different kinds of “winning.” Aaron has autism but he also has the need for belonging to a group and regular exercise. Robert stared blank-faced, and after several more minutes I changed the subject. To this gifted 14 year old, who has above-average good looks, athletic ability and intelligence, this made no sense. Sigh.

Robert, Tommy (Aaron’s brother) and their peers are the people on whom Aaron will always be dependent. They are the next generation of parents, professionals, neighbors and…coaches.

The experiences and value systems they are developing in school, in the community, on the cross country teams–right this minute—will directly affecting Aaron’s future.

Robert has never gone to public school, run on an inclusive cross-country team or been friends with people with physical and intellectual challenges. Obviously, even his experiences with his cousin have made little impact. I think that is a deficit in his education. It will impact his future as a member of his family and community. It’s not a visible “D” on his report card, but it is an invisible “deficit” and loss in his life.

Who are the Winners and Losers?

How do you teach that the person who comes in first is not always the biggest winner? Can children learn it takes courage for not just children with challenges, but for all the boys and girls who finish near the end?

WINNERS are sometime those who RISK losing…being laughed at…coming in last.

Learning and Teaching Values

Each nation decides what is normal, average and gifted. They decide who are the winners and the losers.

Recently, we’ve been stunned by news accounts which demonstrate how the values in Iran, China, and Russia are different from our own. We have also witnessed incredible changes in philosophy, public opinion and policy. Values are fluid, changing and dependent on multiple factors.

Shaping those values and rights is something we do every day, consciously, or unconsciously. Sometimes value changes are dramatic like the Berlin Wall coming down–winners. Sometimes value changes are dramatic like Tiananmen Square-winners/losers depending on your point of reference.

The rights of citizens are gifts from a nation to their citizens. These rights and freedoms cannot be taken for granted.

The tragedy of having a child with a disability has nothing to do with the child, a syndrome, disease or label. The tragedy comes from the struggle with people in your family, community, country who decide if they will accept and support your family or rejected and isolate you.

Whether the differences are overlooked or emphasized. Whether the winners are only the ones who come in first.

“But Wait until Junior High”

When we went to court in 1979 (Cincinnati Public Schools) to allow Aaron to go to the public school, the doomsayers predicted, “MAYBE it would work in elementary school…But wait until Junior High!”

The teachers care only about academics, the sports are so competitive, the kids are so cruel–during lunch they will put drugs in your child’s milk”

They hatefully wanted to frighten us into accepting the segregated school and a segregated life.

Last Day of Junior School

Today is our last day at Hopewell Junior School and happily those predictions are laughable. Thanks to the vision and caring of the administration, staff, teachers–especially Miss Linda Lee–and the other students in the school Aaron and his classmates have had a great experience.

They are the first class of people with significant disabilities who have been able to attend a regular public school. It has been a new experience for everyone and it has been a success.

Aaron has had many opportunities for learning functional skills which will help him live, work and participate in the community. But more importantly, he has had opportunities to be “included as a regular student.”

There were some who wondered why a kid, who can hardly talk, much less sing, would practice and perform on stage with the school chorus?

Why someone who has severe balance and flexibility problems would try to participate on the cross-county and track team?

They wonder if it be would have been safer if Aaron rode the “handicapped bus” with an extra aide, instead of the regular bus with his brother?

They will never understand why we hate Special Olympics?

These parents, students and community members can’t figure out what could Aaron possibly get out of an assembly, or six minutes in regular homeroom?

The answer to most of these questions then and now is really WE Don’t KNOW!

The schools are changing the future

Aaron has gifts, strengths and talents and when given opportunities for learning–determination and pride. We do have observations.

Each time a schoolmate says, “Hi” and forces Aaron to give eye contact, each time a teammate said, “Go Aaron, you can make it!” or gives him a high 5–it is a victory.

Each time they see Aaron make it over a creek or down a hill we celebrate.

Every time they see him complete his vocational job stacking juice cartons in the lunchroom, sorting the silverware, filling the pop machines–it is a value enhancing experience. Aaron can learn to do jobs, that if he didn’t do them, someone else would.

This year Aaron’s picture is in the yearbook next to his brother’s. He and Tommy’s picture is in also with the athletes for Cross Country and Track. A First!

A general education high school student cared enough to help Aaron participate in a bowling league. And then, he took him to the Eighth Grade Dance whose theme was “That’s What Friends are For.” A First!

Aaron’ name (granted it was a name stamp) was on the class t-shirt. A First!

Aaron got a school letter in cross country and track, including being in the team picture. A First!

Aaron got his first paycheck from his vocational training site, Grote bakery, allowing him to become a taxpayer. A jump-up-and-down first!

A whole lot of Learning

To me, these shifts in school philosophy, values and focus on inclusion are every bit as dramatic as the Berlin wall coming down.

In the current evolution to merge special and general education, to change special separate classes into a system of inclusive classes with support services for ALL children–the new ideas, opportunities, choices, risks and freedoms are truly exciting.

Hopewell Junior School has given Aaron and Tommy the chance to be winners. The chance to show that sometimes the biggest lessons are not just in the classroom.

Their success has been a victory.

Hopefully, in this human race, our world will become a better place because of the mix of people who grow up more fully with the experiences of community inclusion.

Thanks for your continued support. Thanks for making Hopewell—a Well of Hope.

Sincerely,

The Ulrich Family

Epilogue: 20 years later

Junior High turned out to be one of the best times in Aaron and Tommy’s lives. They both had caring teachers who looked at each of their individual needs. I wish we could find out what memories the other students had of their time with Aaron and Tommy in cross-county, track, bowling, choir, gym… I bet they would have some funny stories. I wish them all well.

ps. We often think of how the students are going to grow up and be the next voters, taxpayers, citizens… but we often forget the school staff also evolves. Aaron’s teacher, Miss Lee went on to become a district supervisor and Dr. Taylor, the prinicpal, is the current Superintendent of Lakota. I like to think their experiences with Aaron and Tommy influence who they are today.

Keep Climbing: Onward and Upward
All my best,

Mary

Comments:

Were kids with autism and severe disabilities included in your school? Do you have any thoughts to share? What do you think the future looks like?

A related story is What is Inclusion? plus, pictures of Aaron and Tommy at graduation.