Aaron and Tommy always loved Halloween. Me too. The holiday is such a great way to build an inclusive community.
There were some segregated, handicap only Halloween parties for just kids with autism and developmental disabilities, but I wanted Aaron to be part of his community. With a little preparation and a lot of team effort it worked.
When Aaron was 8 and Tommy 6 years old we lived in a great neighborhood with lots of kids (click here for related story) and Halloween was something special.
In the picture above, check out Tommy’s hand. He is holding the ghosts we made and handed out for Trick or Treat.
Task Analysis: Tootsie Pop Ghosts
We took a Tootsie Pop, wrapped a white tissue around the round top, tied it with orange yarn, and with a magic marker added two eyes.
Cute, something homemade and the kids loved them.
One of the most important concepts in special education is the idea of partial participation. If someone can’t do the whole activity, could they at least partially participate and do some smaller part?
For instance: Aaron, Tommy and I all worked on the Tootsie Pop Ghosts for a couple evenings before Halloween.
Aaron’s job was to take the tissue out of the box.
In addition, sometimes he would hold the stick of the Tootsie Roll Pop while Tommy added the tissue. My job was to tie the yarn. It was a team effort, an inclusive experience.
We each did a part of the whole project. We each partially participated.
Aaron contributed what he could do. He could pull the tissues out of the tissue box independently.
He could hold the stick with assistance, and only for about a short time. Because he was a valued team member he contributed as long as he could.
Tommy, on the other hand, could have pulled out the tissues as well as most of the rest of the tasks. But what made this activity fun was the fact we all worked together. We wanted everyone to play their part.
Tommy had more skills than Aaron, and more tasks in the activity. He got to choose when he did them, but they had to be done before Halloween Day. I could have forced him to finish all the eyes in one sitting–but then it would have been work and Mom’s timeline.
Instead he got to make his own decision and chose to finish them while he watched The Transformers, Electric Company and Scooby Doo on TV–his timeline.
He finished up the ghosts by adding the eyes and jamming the stick of the finished ghost into a shoe box lid so the ghosts would “float.” He chose the time, was self-motivated and had the satisfaction of seeing the job to the end.
We made enough ghosts so both Aaron and Tommy could take them to their classes at school. They were always a big hit and I think they were proud they worked on them.
On Halloween night, Tommy went with all his friends in a crowd of ghosts, clowns and monsters. He was gone for hours and filled his pillow sack as full as he could. One of the neighborhood mothers kept an eye out for Tommy.
Usually Aaron and I would go to the immediate neighbors while Dad manned the front door of our house.
One person could not be three places at once: with Tommy, with Aaron and at the front door. We really needed our neighbor, our community resource, to help us out.
Tips, Sensory Issues and Routines
This particular Halloween Aaron learned about doorbells. We went to each house and I would point so Aaron would know where to press and he would just smile as the ding, or ring, or buzz sounded. He had a great time. Cause and effect. Press the button–hear a funny sound.
The neighbors were always very kind and generous because they knew Aaron. If I prompted him with, “Aaron what do you say?” he would respond, “Thank you” and give them a smile. It really was a way they could get to know Aaron and we could build our community relationships.
We only went to about 10 houses because of all the excitement, plus maneuvering the steps and the dark was a lot of sensory stuff to handle. But Aaron really seemed to understand and enjoy the routine: Go to house…climb up the steps…ring the bell…get candy…say thank you…repeat.
It was a fun night.
What wasn’t so fun was the next night. See, Aaron learned the routine really, really well. Too well.
So, the next day guess what? I was busy taking the groceries out of the car, when I looked up Aaron had somehow gotten to the house next door, rang the doorbell, and was waiting for some candy.
It took me longer than my neighbor to figure out what was going on. She just smiled, reached in her extras from the night before and handed Aaron a chocolate bar. I could have hugged her.
Tommy to the Rescue
Tommy thought the whole scene was hysterical. Our whole family laughed about Aaron’s behavior at the dinner table but we knew we had a problem. How were we going to teach Aaron that Halloween only came one day a year? Why was it okay to do something one day–but not the next?
Tommy came up with the solution. He suggested we put away all the Halloween decorations and candy. And sure enough, it worked. Without all the reminders, Aaron moved on to other things.
This Halloween, Tommy will be taking his baby girl Trick or Treating for the first time. And Aaron, he will be passing out Tootsie Pop ghosts when the neighbor kids come to his house.
Trick or Treat? Comments?
Tell us some of your Halloween stories and memories? Stories of partial participation, over-generalization, community building…
To the best of my recollection, this is how it worked:
The Landscaping Mobile Work Crew
Definition: Supported Employment Model: Mobile Work Crew
A small crew of persons with disabilities (up to 6) works as a distinct unit and operates as a self-contained business that generates employment for their crew members by selling a service. The crew works at several locations within the community, under the supervision of a job coach. The type of work usually includes janitorial or groundskeeping. People with disabilities work with people who do not have disabilities in a variety of settings, such as offices and apartment buildings. Supported Employment
Sometimes Cemeteries are for the living.
JOB ANOUNCEMENT: The cemetery board posts the lawn maintenance jobs for bids in the local paper.
The County Board of Developmental Disabilities (CBDD) job developer bid the job. Because of the size of the cemetery, the administration of the cemetery awarded several contracts. (For the five years I was involved, the CBDD got one of the contracts each year.)
The CBDD paid the workers minimum wage from this contract. Each member of the Mobile Work Crew was already on Medicaid/Medicare and the seasonal wages were within the limits of their SSI and SSDI requirements.
The job developer negotiated the details of the contract as well as was the contact person for any problems between the cemetery administration and the board as well as members of the mobile work crew.
The cemetery provided the equipment. There was a garage-type lounge for all the crews and workers with a table and restrooms. They could mingle with the other workers from other lawn companies (non-handicapped) in the lounge. There was some natural support from the other workers who were doing the same jobs and the same sweating.
SUPERVISOR OF MOBILE WORK CREW
There were six people with disabilities and a supervisor on the crew. The supervisor was a year long salaried employee of the county board of developmental disabilities. She had experience working with people with disabilities and had been trained as a special education teacher. She had total responsibility for keeping the workers safe, happy AND getting the job done. If she needed extra help, she would go to the job developer or her other CBDD staff.
Aaron’s job coach was under her supervision (because she was in charge of the whole job) but worked independently with Aaron.
All the adults with disabilities would be transported from their homes to the sheltered workshop. The supervisor would drive a small van, similar to the vans the other lawn service companies used, from the sheltered workshop to the cemetery and then back to the sheltered workshop for the trip home.
On days when it rained, the crew could stay home if they wanted, or hang out at the sheltered workshop. If there was work at the sheltered workshop (usually not) they were able to jump in. If there was no work they could hang out with their friends and play cornhole, bingo or whatever the activity.
Before the crew began work, the supervisor and job developer made task analyses of each of the jobs. The individuals with disabilities applied and interviewed with the supervisor. If there was a good match, the training, modifications and accommodations were added to the individual’s Individual Service Plan (ISP).
Who knew there were mowers about a foot wide which fit easily between the older tombstones? There were four mowers in this mobile crew.
There were two weed-wackers or whatever they are called. (The cords swing around and cut the weeds which the mowers miss.)
There was a “task analysis” of each job.
They were trained on the job. (They didn’t practice cutting the concrete in the parking lot to get ready*smile*)
Because the job was repetitive, it was a perfect fit for many of the workers. They knew exactly what they were supposed to do, and after a short time, were independent in many parts of the job.
If any of the workers needed adaptations (shorter hours, more breaks, special gloves or boots…) these were included in their ISPs (Individual Service Plans). Therapists (Occupational Therapist, Speech/Language and Physical Therapist) were available for the initial evaluations/training, if necessary.
The supervisor would start the day with some conversation, some joking around and individual attention to each of the crew members. They would get a short break mid-morning, they brought their own bag lunch, and a mid-afternoon break. But most of the day, it was sweaty and hot and lots of hard work—serious business.
The supervisor made sure the crew members had sun-screen, hats, appropriate clothing, solid shoes (no sandals), water….
She also worked side-by-side with the workers. She made decisions to go to another section if a funeral was in progress, if the area was underwater…; she pulled weeds… and did whatever it took to make sure everyone was successful, and the finished job met the requirements of the cemetery board.
Aaron, my son with the label of autism, does not have the skills to run a lawnmower or weed-wacker. He would not be able to be part of the mobile work crew of 6 workers who are mostly independent on the job once they are trained. Because Aaron was in the official “transition” from school to work, he was eligible for a job coach from Rehabilitation Services.
So, because he had the physical support of a job coach, Aaron had the opportunity to join the workforce.
Is there some job he could do at the cemetery? Could he partially participate in this work?
After doing an ecological assessment of the job, Kim (Aaron’s job coach) decided Aaron could pick up the sticks before the lawn mowers came. So Aaron and she would drive a golf-cart to the area where the crew was mowing, and then they would collect sticks, dead flowers, and other stuff left on the graves, put them in a trash container tied to the back of the golf-cart and then take it to the dumpsters.
Aaron loved this job. First of all, he loved Kim, the job coach. She made him feel important, she helped him when he had trouble bending over, she helped him put the sticks in the trash container, she helped him wheel the container to the dumpster. Kim, looked at every piece of the job and asked herself, “How could Aaron at least partially participate in this job?”
Plus, Aaron loved riding in the golf-cart. When Aaron did particularly well, Kim would give him an extra long ride around the large monuments.
The side benefits were Aaron made a small amount of spending money, he paid into social security, he was out in the sunshine (with lots of sunscreen) and glowed with health, he was physically strong from all the exercise, plus the emotional benefits: he knew he was contributing, he was part of a group of people who valued his work, he could make all the noises he wanted (and wouldn’t wake up the dead), he enjoyed riding in the golf cart, instead of physical therapy practicing his balance climbing steps to nowhere—he had a functional way of practicing his balance in the real world. He had a great friend and mentor in Kim. It was a terrific experience.
And, for Memorial Day, 4th of July, Veterans Day… Who was the person who put the flags on the tombstones?
It was Aaron.
Trivia too good to pass up: One of the cemetery monuments is enclosed and heated. Yes, the person who died years ago was so afraid of being “cold”–they stipulated in their will that the space above the grave would be heated (including a back-up generator in case the electricity failed.) That is a powerful “fear.”
Keep Climbing: Onward and Upward
All my best,
Have you ever seen a mobile work crew of workers and wondered how it worked? Is partial participation better than no participation? Should people with disabilities be allowed to work?
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.
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 for 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 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?
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 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, 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,
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.
Today’s Feature for all you country music fans is from the Ohio Chapter of People First and was shown during the Rehabilitation Services Commission (RSC) Conference in 2012.
I loved this video, the message, the music, the participation, the fact that the People First group made the video and presented it to the “professionals”–I mean, who is teaching who?
Thoughts on Jobs and the Role of Government
Every day I watch my son, Aaron who has the label of autism, as he sits and loses skills he had in high school. We still have the dream plan, we still have the hope, but we need help to make it happen.
Why is that?
I know it is very popular to bash the government. “Not a government plan”, right? But is that what we really want?
The model programs, grants, initiatives for work, and job coaches of ten years ago are gone-zap.
New RSC priorities and guidelines, cutbacks, and more cutbacks on funds have dried up and forced us back to depending on the charity, kindness and pity of others.
It’s NOT a matter of not knowing what to do
We know how to support people in the workplace. It is difficult surely, but we know how to get people jobs.
Special Education and Rehabilitation Services has decades of research and model projects. Marc Gold, Lou Brown and hundreds of skilled teachers and professionals have shown us the direction and specific skills we need to get jobs. In this short video Dr. Lou Brown talks about institutionalization vs. community.
Unfortunately, because there is no mandate for adult services (like public laws which require children to go to school), there are also no requirements for adult day programs. No certification for the people in charge (GED preferred instead of licensed teachers), no functional or community-based curriculum, no related services like speech, physical or occupational therapists. Adults are on their own. And there is no due process rights for parents/guardians to hold people accountable. We are told to find another program if we are unhappy.
So, what are our alternatives?
We have to keep believing. Keep telling others about the vision of a job, or if not paid, then meaningful work/volunteer experiences.
Our young people have to remind us not to give up. They have to keep in our face singing, shouting and even misbehaving.
Certainly, we need the government. And we need those government plans to be more than just pieces of paper–we need them to support each individual so they can at least partially participate in having a job.
Comments: Any thoughts on “I need a job?” Any other videos you want to recommend to our community?