What I love about this video is 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 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.
Standing with One Person–and Many
Our 45-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.
Aaron, my son with the labels of autism and developmental disabilities, had a doctor’s appointment so I brought him late to his adult day program.
A Visit to the Jungle—Jungle Jim’s that is.
Thanks to cell phones, I connected with his group on their community outing at Jungle Jim’s. This is a mega grocery store with a jungle theme: animated monkeys, giraffes, and other animals spread throughout the store. It’s a pretty neat place and features foods from around the world.
Like most people, Aaron and I got a grocery cart when we entered the store.
Adults with Disabilities in Large Group
We found the group–immediately.
Coming down the meat aisle, two women in their 30s were holding hands walking in front of three people in wheelchairs. Both woman had Down syndrome were about 5’6” and weighed about 200 pounds. Another man (about 50) was holding hands with a female staff person. The second staff person was pushing one of the people in wheelchairs. They did not have any shopping cart.
Gosh, I wonder how we found them so easily?
When one of the staff people saw Aaron pushing a grocery cart, she said she was surprised he had those skills and could tolerate the noise and confusion of a grocery. I assured her Aaron was fine and in fact, since he was in second grade, grocery shopping was part of his functional curriculum (click here).
The staff person didn’t really pay attention to what I was saying. Since she was the professional in charge, and I am clearly just the mother, she politely said I could leave and she would watch Aaron (along with the other six people).
To her surprise, I smiled at her and said there was NO WAY I was going to leave. (What I actually said was a lot nicer–what I was thinking was actually not a lot nicer.)
A group of preschoolers were also visiting Jungle Jim’s that day. The teacher had prearranged an instructional tour. A store employee, dressed like a jungle safari guide, was explaining how cheese comes in huge round blocks from many different countries. Even with the guide in her camouflage pants and a netted hard hat, and the teacher saying “Who can tell me what shape that is?” all the kids were gawking at our group.
Our two aides, of course, just kept herding the group of adults with disabilities down the aisle. They talked to each other about the general prejudice of our society toward people who are different, and young children who just didn’t know any better. After all, they are Christian women who care about the “least of God’s children” and they are the enlightened ones earning their crown in Heaven.
Purpose of the Grocery Trip
Unlike the preschoolers who were making the trip to the grocery an educational experience, I asked one of the aides what our group was buying at the grocery. She shrugged her shoulders and said, “Oh, it is the end of the month, we are out of funds–so we are just looking around, enjoying the air conditioning.”
Shock in Aisle 4
I was with Aaron and our group for about 15 minutes and I was on the edge of hysteria. I literally had to do calming breaths. I felt like I was in a time warp from the ‘80s. I kept thinking of the years Aaron’s occupational therapist, speech/language pathologist, physical therapist, teachers and instructional assistants taught Aaron to plan his purchases, buy items, make choices, use his picture communication book, use his wallet, push the cart without hitting anyone, maneuver around kiosks and displays set up in the middle of an aisle…. Aaron even worked at a grocery store, with his job coach, stocking shelves as part of his work transition plan.
I also thought about everything I knew about normalization–to go to the store in small groups (no more than two) and blend into the population. To have the skills and behaviors of a consumer so you were a valued customer and respected member of the community.
I remembered Alison Ford’s presentation about, “There is so much more at the grocery store” and the Syracuse Functional Curriculum. And Marc Gold, Lou Brown and Sharon Freagon’s slides using the grocery store for a teaching environment because it was a community environment that would be used for a lifetime–multiple trials over multiple years.
Inclusion and the Jungle
One of the lessons of nature is that for animals to survive, they need to blend in, or be camouflaged into the environment. That is why polar bears are white, and alligators look like logs floating in the river. It is why the female cardinal, who carries the young, is a dull brown and her male partner is bright red to attract the attention of predators.
The history of man also tells us about the power of in and out groups. We segregate criminals in orange jumpsuits so they stand out and everyone knows there is danger. The Nazi’s forced the Jews to wear Stars of David arm bands to clearly stigmatize and identify their enemies. Police uniforms identify people who we can ask for help.
The history of people with disabilities also includes the stigma and isolation of people as being so different, so dangerous that parents would point to strangers and urge their children away.
Because Aaron does not communicate like other people. Because Aaron has some bizarre behaviors. Because it takes people a while to get to know him. Because of his labels… we make sure Aaron is well groomed, wears stylish clothes and can survive by blending into existing groups.
We practice the principles of normalization and inclusion everywhere we go. We work hard to help Aaron be seen as a contributing member of the community, a valued member of a family, a friend, a loving uncle.
Like the jungle, “the survival of the fittest” belongs to those who can camouflage themselves into the natural world, or in disability-speak, be included in the community.
Obviously, none of these aides had read about this, or anything else. In fact, these loving caring aides who work for minimum wage do the job as a labor of love. They are not trying to stigmatize Aaron and his group–they just don’t know any better. They are not trying to alienate and waste the people’s time and let their skills deteriorate—they really, really, really just haven’t been trained.
So, of course, Tiger Mom took over.
That day I decided to stay and try to teach some skills. I have trained parents and teachers, I have a lifetime with Aaron so Tiger Mom went into action.
I figured the normalization lesson would have to wait because there was no way our group was ever going to blend in. (How could two aides handle seven people with significant disabilities, three who used wheelchairs?) We also did not have enough staff to divide up in small groups and spread out in the store.
Let’s Buy Something?
So I suggested, “Let’s buy something, and I will treat. What could we make for a snack? Or what do you need?” (MAKING CHOICES—giving dignity to the people.)
One person suggested we make smoothies. Great, smoothies! (That is AGE-APPROPRIATE. People of all ages like smoothies. It was hot outside so it was appropriate for the time of year.) Smoothies it is!
I ask the group what ingredients we needed to make the smoothies. Each of the seven people had a particular item to find on the shelf and put in the cart Aaron was pushing (FUNCTIONAL SKILL: IF THEY DIDN’T GET THE ITEM, SOMEONE ELSE WOULD HAVE HAD TO GET IT.)
Aaron pushing the cart was a balancing and behavioral technique to keep Aaron on task and keep him from running off down the aisle. It also put Aaron in a valued position because he was needed for each item. It also required each of the people to (SOCIALLY INTERACT) with Aaron.
Teaching “Learned Helplessness”
The people with disabilities all got into it. But the kind, but totally clueless aide was doing everything for them–even putting the item in the cart for them. And, obnoxious me, I would return the item to the person, put it in their hands and ask them to put the item in the cart. (LEARNED HELPLESSNESS.) Geesh!
Since Aaron was pushing the cart, he was like the leader of the safari. He did great, but I swear, the others had either lost their skills or hadn’t had much opportunity to learn about PARTIAL PARTICIPATION and practice being an active participant in the shopping environment.
We had a hard time finding the frozen juices, but guess what? Near the ceiling, there was a big sign that said “JUICE” – which I of course, pointed out so the group could READING CONTEXT CLUES it.
The aides–actually, I don’t know what the aides were thinking—they looked at me like I was nuts to point out a sign to these people who they knew couldn’t read.
The safari ends with checkout and the group being loaded into the vans.
I let Aaron leave with the group. I said goodbye and I hoped they enjoyed their smoothies, and then… I sat in my car and cried for 20 minutes and was depressed for the next week.
All of our fight for inclusion in a regular school, fight for a functional community-based curriculum, all the research and knowledge we have acquired for the last 30 years in special education–and here is Aaron in the middle of what felt like a freak show.
Even if I tried to feel some redemption about the functional shopping experience with the outcome of them making a smoothie, and even if I tried to ignore my overstepping boundaries and staying, “Just a mother.” The low expectations (click here) and lack of skills felt hopeless. All the skills that Aaron had, and now was losing.
I haven’t resolved this. The aides were good people doing a tough job. Imagine lugging 7 adults in and out of vans, and not having the funds to buy anything on a trip to the grocery?…. but my heart just breaks for Aaron. His dream plan, years and years of work–and it is like it never happened.
Children have value and hope. The adult world has no mandates, no IEPs or due process. Where are the people who certify these programs? How can these good aides have so little support and resources?
Thanks for listening, I know you don’t have the answers either. I stopped in Aaron’s day program again yesterday and the group was making lady bugs on green construction paper leaves from a pre-school activity book. Geesh!
Deep breathe, in-out-in-out.
Lady bugs are supposed to be good luck, right?
I feel like I should end with a joke or something to lighten this up, but I feel betrayed by the paid “Professionals” in our county who know better. Where are they?
Am I really supposed to just “feel grateful” that Ohio has any programs at all, and Aaron’s developmental twin in Tennessee and South Carolina are just sitting at home doing nothing?
Of course, last year was worse and at least now, Aaron is out of the crowded back room with no windows at the sheltered workshop.
He is surrounded by kind people who care about him. It could be worse. But wow, it certainly could be better.
Keep Climbing: Onward and Upward
All my best,
Please chime in:
What would you have done? Would you just watch? Would you just leave Aaron and go? Would you go back to the grocery for a bottle of scotch? Any suggestions? In this jungle, what would a “normal” shopping trip look like for the people with severe disabilities? What message do you think the preschoolers got? What would be better?
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When my son Aaron was in school, shopping was part of his curriculum. From the time he was ten years old he went to the bank and grocery one day a week as part of his special education school program. Here is a short video with Dr. Lou Brown.
This was best practice and came from the work of Drs. Lou Brown, Alison Ford, Sharon Freagon and many others. The idea of a functional curriculum for people with autism, intellectual and developmental disabilities is:
* it takes longer to learn skills, so let’s make sure we teach important skills and not waste their time on dumb stuff
* it takes lots of practice, so let’s give the student lots of opportunities and trials
* use it or lose it, so let’s make sure the skill is something the student will need their whole life
* transition from school to adult life will be smoother
* we only teach skills that if the person didn’t do it, someone else would have to do it for them
* the ability to purchase items would give the person more dignity, self-esteem, self-determination skills and choices in their life
The way it worked was each week, Mom sent in a check for $10.00 and a shopping list. The class went to the same grocery store (because each store is different). Each student cashed their check at the bank and then bought items from the list to take home.
In addition, students also planned a lunch to be made in the classroom the following day. Each would purchase a couple items for that group lunch. These items were purchased with the classroom credit card.
This functional curriculum was based on the philosophy that Aaron would go to the grocery the rest of his life. Before the school year started the IEP team decided this was a high priority skill because he would need to buy food and other items when he was an adult. If he didn’t learn to purchase these items, someone else would have to buy them for him. If Aaron could purchase the items he would have more choices and say in his life and therefore a better quality of life. (Who wants someone else deciding you can only have Cheerios for breakfast all your life.)
Related Service Staff
The curriculum was designed by the IEP team including specialists and the parents. After all, who would be taking the student to the grocery on the weekends, summer, and after school. And who knew what the student liked better than their parents?
I was in the school a lot and went on many of the community training trips with Aaron and his class.
It takes a Village
The speech and language therapist helped Aaron build picture sequences of “shopping at Krogers,” check-off lists with pictures for grocery lists, and learn to interact with the cashier “Thank You” and give a High 5 to the bagger….
The occupational therapist helped Aaron figure out which coin purse/wallet worked best, learn to pay with the next highest bill, learn how to take the money out of his wallet (hold wallet in left hand and take out bills with right) and after many failures of getting the change back in the wallet–it was decided Aaron should just put the change in his pocket….
The physical therapist helped Aaron figure out how to climb up and down the steps on the bus (hold on the rail with his right hand and count the steps), how to maneuver the parking lot (and yes we had an IEP goal that said with 50% accuracy), how to enter the right door–even if there are two “in” doors,
how to reach the items on the bottom shelves (hold on to the grocery cart with his left hand and reach with his right)….
Depending on the therapists schedules, they might only be involved in periodic assessments, or they could go with the class every week. This was an excellent way for the therapist got to really see Aaron in this environment and practice REAL life skills.
The teacher and assistant teachers went every week with the 6-8 students in the multi-handicapped class. She/he helped Aaron match his pictures to the actual items in the store, find his favorite items and put them in the cart, learning appropriate social skills….
After High School
Unfortunately now that Aaron is out of school, he has lost most of those skills because adult service staff refuse to take him to the store or don’t have the knowledge or support they need. Here is a story about Aaron’s home (click here). It is not the fault of the staff. Some of them are very loving and do a great job.
Aaron and I are a team and we have worked out our own system. We only shop for about 10 items and Aaron puts the items in the cart. Sometimes Aaron will grab something off the shelf and if it is anywhere close to something he might want, I’ll let him buy it. ie. if it is a bag of cookies or cereal –he can keep it. If it is a box of denture tablets probably I’ll tell him what it is and put it back.
Choices: Quality of Life and “If Only”
If I had the opportunity to change things in Aaron’s life, it would be that adult services used a functional curriculum and adult residential services gave Aaron and others with autism and severe disabilities the opportunities to practice their skills. There is no question Aaron would not currently be LOSING these skills. There is no question these skills would enhance Aaron’s self-esteem and quality of life.
The reason I could insist on these skills being taught and used when Aaron was school age was because of the federal mandate in IDEA. The Individual with Disabilities Education Act said that parents were part of the IEP team and the parents had due process if they disagreed with the school personel. There is no such mandate for Adult Services, no due process for parents and/or guardians. Plus, in Adult Services the staff does not have to be trained or have any teaching license.
As my friend Deb used to say, “When I am made Queen of the Universe” I will declare it. Until then, I’ll take Aaron every weekend and give him as many functional experiences I can.
And of course, I’ll dream of the day I am Queen of the Universe. *smile*
What ifs? Comments?
Any stories about your child’s school experiences preparing them for the future? Any luck with using those skills in their adult life?
Anyone else want to be “Queen of the Universe”?
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.
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.”
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?
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.
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,
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.