Grandma gets a Thong
Helen Otten, my mom, died April 3 at the age of almost 93. I’m posting this in her memory. I’m also reminded of the importance of family.
The twelfth day of Christmas is Jan. 6th–Little Christmas, The Feast of the Magi.
Actually, it’s all the Magi’s fault. They are the ones credited with giving the first gifts.
Based on the number of people in line at the return desks last week, I’d say many people had problems with their gifts. (Actually I could see Mary and Joseph thinking the gold was useful, they could buy a wagon or better donkey, but what were they supposed to do with Frankincense and Myrrh. Myrrh–really????)
I know it is supposed to be the “thought that counts,” but it really is much more. Gifts are a whole cultural phenomenon.
My mother is 89.
Recently she’s had hip replacement surgery and has trouble shopping for herself.
Two months before Christmas she told me she wanted slippers. Slippers it is. I don’t have to guess her gift. And this is great…EXCEPT
Every day for the next month she would call me on the phone (usually at 6 AM because that is when she wakes up and is thinking about slippers) and define what kind of slippers. They had to have rubber soles so she could wear them outside if she wanted. And this is great…EXCEPT
She couldn’t tell me her size. It seems some Large slippers are size 8-9, some Larges are size 9-10. And the manufacture, design, model, production all make a difference.
I went to three different stores and brought her “Pair number one” on Thanksgiving. She didn’t even try them on. Which actually made it easier to exchange them, which is great…EXCEPT
She really wanted black. But none of the stores made black slippers. So, I picked out some navy size 8’s and 9’s and 10’s, and some pink (everything she owns is pink) in a size 8-9, and 9-10. And I figured I’d give her a choice. Which was great…EXCEPT
She decided she wanted slippers that weren’t slip-ons. “Only the devil would make slippers with open backs” and she has had slippers that covered her whole foot, well–her whole life. And, she thinks she has ugly toes, so–none of those slippers with toe cut-outs. So, I boxed up and returned the slippers. And it was great…EXCEPT
The next three stores didn’t have black or whole foot slippers. But they did have navy.
You know where this is going, right?
Yep, I rebought her the same slippers (that she wouldn’t even try on) from the first round. She opened them on Christmas and said they were perfect.
So, it makes you wonder.
Was the gift really about slippers at all?
Grandma and the Thong
The picture above is from a previous Christmas. My sister Martha worked in a lingerie store and gave each of the girl cousins a pair of thongs. They thought they were nice. Certainly something practical they could use. EXCEPT
She also gave one to Grandma.
The gift became an urban legend in our family. It brought down the house.
Even though mom didn’t even recognize the thong as underwear—it was the shared experience with her grandkids that made it the perfect gift.
Which again makes me wonder about gifts.
Aaron’s Christmas Gift and Charity
This Christmas Aaron went to a Christmas Party sponsored by a local non-profit. These are kind folks. Many of the people with severe disabilities are the poorest people in the county and don’t even have family members who can give them gifts. So, this is not only a nice gesture, it is an opportunity for these poor souls to get a little something extra.
This year the non-profit got items donated by local businesses to give as gifts. Over 150 adults with disabilities came to the Christmas Party and Dance.
There are so few recreation opportunities, many of the people put on their best clothes and showed up early. Many more wanted to come, but there was little transportation and they depend on staff–who didn’t want to bother.
At the party, even though they arrived early, there were only chairs for 100 people. So Aaron and Jack, his roommate, had to stand and hold their coats.
Since Aaron has balance problems, and couldn’t understand why he couldn’t sit down (people were guarding their chairs) he started biting his hand and pinching others. Not good behavior at a party.
Their staff person made the sensible decision to leave (even more people were coming in the already over-crowded room). Aaron and Jack were each given a “gift bag” at the exit. Which was nice… EXCEPT
The gift bag had a pair of donated slippers. Yea! I would be laughing too, slippers… EXCEPT
The slippers were size 11.
Aaron wears a size 9.
Now, no one with balance issues is safe wearing a pair of slippers two sizes too big. And, unlike my mother, these slippers were charity—donated. So there was no gift card or receipt, most people had no dutiful daughter, family or staff who cared to make an exchange.
And, Aaron couldn’t understand why anyone would give him slippers he couldn’t use. So he just carried the slippers around the house—making me crazy that good, kind people could be so dumb. After all who is the “intellectually challenged” person here? Did they think they wouldn’t notice the slippers didn’t fit? Or all people wear size 11?
Is “Just getting something to open” the point? Even if they can’t use it?
What is Charity?
If you plan a charitable event and are giving gifts:
Don’t just arbitrarily pass out slippers, or coats, or T-shirts with misspelled words.
Don’t give radios with no batteries—because they want to use the radio that minute and staff often won’t be bothered with batteries.
Don’t give them things you couldn’t sell or are broken.
Don’t make your interaction a one-time-event.
Do have a party with chairs and refreshments for everyone.
Do get to know people as individuals
Do think about what YOU would want to get
Do think about normalization, age-appropriate entertainment and gifts.
Do think about transportation and staff and family members
Do consider that the shared experience, like Grandma getting the Thong, may be the best gift ever—no excepts.
Keep Climbing: Onward and Upward
All my best,
Okay, best/worst gift stories? Am I just being an ungrateful jerk? What is the role of charity? Is it appropriate to give broken, torn things to Goodwill/charity? Only 258 shopping days until Christmas????
To celebrate the new school year here are some of my favorite posts:
Article 1: Why Do We Go to School?
Article 2: Back to School| A New Year of Learning
Article 3: Back to School| What is Inclusion?
Aaron learning money skills to use in store
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.
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.
So I take him every weekend when he is home with us. Here is a story of a recent shopping trip (click here).
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”?
Keep Climbing: Onward and Upward
All my best,
Building Community| One grocery trip at a time
It’s a Jungle out there| Inclusion in the grocery store
Kill the Turkeys! Life Lessons for People with disabilities
photo credit: Bobasonic
In the last post, Memorial Day and People with Disabilities I talked about how Aaron, my son who has autism, worked at a cemetery after he graduated from high school.
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?
FOR MORE INFORMATION:
Partners in Employment
Many people have a hard time understanding the concepts of independence vs. interdependence, inclusion, multiple intelligences and cooperative learning. I thought a revision of The Animal School by George Reavis might explain it all.*
THE ANIMAL SCHOOL
Once upon a time the animals got together and decided to start a school.
The parents and teachers wanted to make everything FAIR, so they decided ALL the animals would take ALL the subjects. No exceptions.
The curriculum consisted of classes in swimming, running, flying and climbing. Each student would need a grade of C to pass. There would be a competition to see who could get the best grades.
Doug the duck was excellent in swimming, in fact, better than his instructor. But Doug made only passing grades in flying and was getting Fs in running and climbing.
At a team meeting, it was decided he needed to drop swimming and take remedial classes to practice running.
This continued until Doug the duck’s webbed feet were badly worn and he was only average in swimming.
But average, or C, was acceptable in school, so nobody worried about that—except Doug and his family.
Rene the Rabbit started at the top of her class in running. But she soon had a nervous breakdown because she was failing in climbing and the others made fun of her in flying and swimming classes. She passed the standardized tests but the last day of class she buried her books and said she would drop out.
Sam the Squirrel was excellent in running and climbing. He also had high marks in flying until the teacher read a research study that said everything should be taught from the ground-up, not the tree-top down.
Edward the eagle was the problem child. He bit the other animals in running class. He perseverated on flying. In the climbing class he insisted on using his own way to get to the top of the tree. After several discipline meetings, it was decided his diving into the river for fish would count as swimming credit. He was considered a loner with no friends. “He just keeps flying off,” the teachers complained and suggested he be put in special education.
The chipmunks were excluded from school because they could not pass the prerequisite swimming tests. They protested and demanded digging and burrowing be added to the curriculum. This caused hot debate among the parents and students. The rabbits and squirrels thought digging and burrowing should replace swimming. The ducks thought there should be better discipline and a subject on following the leader.
Even though he got a D in flying, one frog won the student competition and was valedictorian. All the students and their families were unhappy.
Further, the chipmunks boycotted school board meetings and joined the groundhogs and snakes to start a charter school.
Does this fable have a moral?
photo credit: shoothead
REVISED: An INCLUSIVE Community-based School
(original by Mary E. Ulrich, 2019)
Once upon a time the animals got together and decided to start a school.
The parents and teachers agreed that if the purpose of school is to learn the skills required AFTER graduation, then the students needed a course called “Survival 101.” The school would be at the pond, because that was where they lived.
The school board announced, “Our common survival depends on learning to live interdependently in our community. Lessons need to be differentiated according to each student’s learning styles, gifts and talents.”
The parents and teachers wanted to make everything FAIR, so they decided ALL the animals would have Individualized Education Plans with curriculum goals and objectives.
The teaching methods would be functional activity-based projects which stressed cooperation and problem solving. “Safety at the pond,” was the thematic unit.
There would be individual goals and objectives and each student would work hard, improve on the skills they have, and contribute their talents and strengths to the group project. The stress would be on cooperation and interdependence, rather than competition and independence. There would be no bullying or fighting.
Doug the duck was excellent in swimming, in fact, better than his instructor. Duck was also gifted at getting animals to follow in line.
At a team meeting, it was decided Doug would help supervise all water activities and be the project manager. Doug the duck was excited to be given leadership activities. His goals were: to improve his dive, his endurance swimming across the lake; his life-saving safety skills; and, learn to give specific directions to get the younger ducks in a row.
Rene the Rabbit was a great runner and jumper. Since she was close to the ground, she was in charge of everything on the earth’s surface. She would learn to: identify animal tracks, and, alert squirrel if needed. Because Rene was worried she wouldn’t be able to do her best job, Eagle offered to mentor her.
Sam the Squirrel was excellent in running and climbing. He volunteered to be the lookout and guardian of the trees and wildlife. His goals were to develop safety plans in case of danger. He would run messages, organize safety drills and practice his alarm calls. To help Sam learn to stay on task, he would also be the time keeper at all meetings.
Edward the eagle was excited he could fly. Doug the duck, the project manager, asked him to survey the pond from the air. He wanted Edward to use his “eagle eyes” to scout for trouble, trespassers, pollution, and any animals in trouble. Eagle’s short term goals would be to learn about weather, air pressure, rain and wind.
The chipmunks, snakes and groundhogs were welcomed in the school. They became a part of the community. They gave digging and burrowing tips to squirrel and rabbit. When a fallen tree threatened to block the water flow, they helped dig a channel.
In the course of the year, Doug the duck saved squirrel when he almost drowned. Eagle saved Duck when he got caught in the ice and almost froze. Rene got enough confidence that she wants to be the project director next time. Sam raised the alarm when a group of Girl Scouts came camping and thought it would be fun to catch animals and dress them in hats.
Because all the animals cooperated and learned together, their pond community was a happy and safe place, each animal was respected and valued for their contribution, and, everything was FAIR.
Instead of one standardized test or grades, each animal had gifts, they all survived, learned new skills, made new friends, and could celebrate the true nature of community: interdependence and inclusion.
Does this fable have a moral?
Keep Climbing: Onward and Upward
All my best,
Please add your comments:
Do you know any Dougs, Renes, Sams or Edwards?
Do you know any students who are excluded and asked to go elsewhere? Are the students treated like individuals? Is the curriculum differentiated? Does everyone feel happy, safe and like valuable members of the community? Are students encouraged to build on their strengths and talents or does everyone have to learn the same things in the same ways? Are the students learning skills that will help them in Survival 101 after graduation?
What is Inclusion?
A New Year of Learning
Test Questions| Segregation or Inclusion
*Like my husband, George Reavis taught in Cincinnati Public Schools. The original The Animal School was published around 1940 in The Public School Bulletin long before inclusion was even a dream–or was it?