We’ve all heard the quote about how the most important thing on our tombstone is NOT the date of our birth or the date of our death. The most important thing is the dash—what we did between the two dates. Our birth to death time-line is not just linear.
Our World View is Unique
We live in complex interrelated systems which give us a unique lens to view the world:
*our nuclear family, our extended family and friends
*our local community professionals (bus drivers, barber, doctor…)
*our organizations (churches, clubs, schools…)
*our beliefs, culture, government, and our world
My Uncle Ed was one of the most inspiring people I ever met. In our Archdiocese, he served as a priest in several of the poorer parishes. One Sunday he was actually robbed and shot for the money in the collection plate—definitely not the best neighborhood. When he could have retired, he became a missionary in Grenada where he built a school, a nursing home, and two churches. He loved everyone including those marginalized by society: people who were sick, poor, had disabilities, the young, elderly, prisoners… everyone. Always, he modeled commitment and used his special gifts of humor and basketball to spread the word of God. Another thing Uncle Ed did was lead the songfest at each family reunion.
In part one of “Going to the family reunion, or not?” I talked about preparing BEFORE going to the family reunion. Today, I want to talk about systems theory. I thought about going straight to chaos theory because if your family is anything like mine, chaos rules the day… but systems theory actually helped me make sense of the circles of life.
Bronfenbrenner’s System Theory
In a systems theory perspective each individual is in a dynamic and interconnected relationship with other people and environments.
Resource: Bronfenbrenner, U. (1979). The ecology of human development. Cambridge, MA: Harvard University.
Picture nested Russian dolls where one fits inside the others. In Bronfenbrenner’s social system theory the smallest system is an individual person. But everything is connected; what influences one circle influences all the others. The circle of our family’s culture, traditions, likes, dislikes all influence who we are and what is valued. It is as important as the common blood or DNA.
The Micro System
Each aunt, uncle, cousin, grandchild in my family has their own experiences and beliefs about people who are different. Based on their ages and backgrounds they could have few or many inclusive experiences. Fortunately, Aaron is a part of the family, because of his blood, he belongs. They try to see the good things in Aaron, my son who has the label of autism. When we get together for family gatherings, they each try to fit Aaron into the environments and accommodate his needs.
Some of my cousins are teachers, counselors, business owners, nurses… Some work with people with disabilities in a professional capacity while others have had personal experiences with people in their communities. My sister recently had some hip surgery and applied for a Handicapped Parking permit–as we are all aging, we are all starting to understand the ramifications of being “temporarily able bodied.” Each individual and each family member shares those common experiences, but just as I am learning about growing older from my seniors and elderly relatives, many are learning about inclusion from Aaron.
Considering people with severe disabilities have suffered abuse, neglect, and been ostracized from their family (tribe) being given the opportunity to participate with the family is a gift. I am thankful. I also hope we give positive modeling of what to do, how to act, how to accept others who are different.
Most of my relatives go out of their way to try and help Aaron in the swimming pool, bring him a drink, and help wipe up a mess if he spills something–instead of blaming him. I think some of this was learned from my Uncle Ed.
Uncle Ed always “Got it.” He was a pioneer for inclusion before inclusion was a word. At our family reunions Uncle Ed always brought people from the neighborhoods where he was pastor. There would be kids of all different religions, races and cultures. He was teaching about diversity as we all got in line for the potato salad and hot-dogs, as sure as he was teaching about God and God’s children. When Uncle Ed led the traditional singing, we didn’t sing special religious songs only our family would know, we sang camp songs where everyone could join in: “The bear comes over the mountain” or “The food in the army, they say is mighty fine” and school fight songs.
Uncle Ed was teaching about inclusion, about belonging and the power of a face to face connection. And he lead the way to change attitudes through his embedded social systems.
The last song before the picnic ended was always, “He’s got the whole world in His hands.” Uncle Ed never offered to lay his hands on Aaron and ask for God’s cure. He never tried to “counsel” our family about accepting God’s will. He never gave a sermon on how Jesus cured the blind man. Never once did he tell me I was chosen.
But like Tom, Tommy and I were trying to model, Uncle Ed just accepted Aaron the way he is, saw his beauty and gifts. Didn’t try to change him or us. In the many choruses of “He’s got the whole world” we joined hands and sang about how “He’s got the mothers and the fathers, the sisters and the brothers…He’s got the little bitty children… and He’s got Aar-on in His hands, He’s got the whole world in His hands.”
I know sharing pictures and snapshots of family reunions is boring as can be, but I hope this story shows why our family and extended family are such an important part of who we are. I am so thankful Uncle Ed was a part of my family, a part of my social system. I am hoping my family will also say the same about Aaron.
What about your Circles?
Does systems theory make sense to you? Who are the people/groups/clubs in your circles? How do these impact your life?
Tell us about your social systems, how is your family changing?
My cousin rented her local swim club and invited all 26 cousins and their families for our annual family reunion. She scheduled it on a Saturday when many of my cousins would be in town. She is working hard to keep our large family together and give our children and grandchildren some of the same fun family times we had when we were growing up. Cousin Terri is offering a gift to our family.
So, will we go, or not?
Even though our oldest son Aaron has the label of autism and developmental disabilities, we try to include him in all our family activities. Now that he is in his forties, we have gotten pretty good at the extra planning and preparation to make sure all turns out well.
Today I want to focus on “ecological assessment”. Drs. Lou Brown, Alison Ford, Anne Donnellan et al. from the University of Wisconsin–Madison introduced this concept years ago and it has made a huge difference in how I look at the world. I’m not using their fancy checklists but I’m hoping to show how to analyze and plan for our visit– in this case, Terri’s local swim club.
Ecological Assessment with Commentary:
We can’t assume all swim clubs are alike. We have to access this one particular swim club. But we can compare/contrast it to Aaron’s past experiences.
We have been to this swim club before, if we hadn’t, we would have gone a couple of days before and scouted it out. Most people don’t like surprises or change. It’s not a coincidence that major chain stores like Target or Walmart are all laid out the same way. Each of us likes to know the lay-of-the-land. There is comfort in familiarity and that helps reduce our stress in any environment.
Terri’s swim club is about twenty years old. You’ve seen hundreds like it. The swim lanes, the three lifeguards, the signs telling the kids not to run… It is the same swimming pool our family enjoyed when we were teeny-boppers dripping Popsicles and walking around hoping our swimsuits didn’t make us look fat. (Oh, to only be as “fat” as I was when I was 12.) There are no steps and they have a ramp into the pool. (Thank you ADA.)
Aaron likes the water and is a pretty good swimmer. He started aquatic therapy when an infant to relax his muscles. My husband Tom will be in the water with him one-on-one. His cousins will be in the pool, so they will be aware of Aaron and add an extra layer of safety from stray beach balls.
Aaron has red hair, fair skin, freckles and if we lather him with sunscreen and he wears a t-shirt in the water he will be protected from burning. Past experiences predict Aaron will probably only stay in the water for about a half hour or so. The exercise will be wonderful for him and he will sleep well. Because Aaron swims with his mouth open, he probably will swallow some water and wet the bed. We’ll make sure he gets to the bathroom at night and we’ll use a mattress pad protector just in case.
The swim club has two separate restrooms and changing facilities. They have shower curtain dividers who Aaron and I will both fit. It is a typical swim club restroom, so I might have to bring in a chair so Aaron could sit down. I could change him and then he could go out to Tom while I change. We would bring Aaron in his swimsuit, so we would only have to change him once. We will give him yogurt in the morning and hopefully he will have his BM before we go. I’ll have an extra set of clothes. Aaron has some large plastic pants he will wear under his swimsuit just in case. (They don’t make swim diapers for adults.)
Aaron eats most anything so the pot luck buffet will be great. Cousin Ray will grill hamburgers… I will bring a dish that doesn’t require any preparation. I’ll make sure it is in a throw-away container so we won’t have to worry about bringing it home—maybe some frozen fruit cups or fruit-on-skewers so everyone can grab it and not even have to worry about a spoon. Those have been big hits in the past. Or, I’ll get real summer daze lazy and I’ll just go buy some cookies at the grocery. Aaron will need to eat at a table. I’ll bring some folding chairs. We’ll try and feed him close to his usual 5:30 mealtime. Between Tom and me, we can cut up his food and make sure he is comfortable. Usually, he sits by Grandma, so we can make sure both of them are okay. He can have one soft drink, and I’ll bring some bottled water.
We’ll bring some books and his baseball cards and make sure he isn’t too crowded at the table. We’ll make sure Aaron is in a spot where he can watch everyone and everything that is going on. When he seems tired or agitated we’ll leave. Tommy, Aaron’s younger brother will get to enjoy the day and spend time with his cousins, and we’ve arranged he can spend the night with Cousin Kevin if we have to leave early with Aaron. We’ll make sure someone is with him at all times but trade off so we can talk to some of the relatives. If Aaron starts his echolalia of, “You Okay?” or other odd behaviors, it will really be okay, because his cousins know and love Aaron. He is part of the family.
This post is to show what an ecological or environmental assessment looks like.
Most parents do the same thing for their babies, their children, their older family members. It’s really not that different–just thinking ahead, planning and being prepared.
If we really want Aunt Lizzie or Great Grandma Stella to come to the family reunion, there are little things we gladly do to modify the environment and accommodate their needs. For instance, Great Grandma Stella will surely take out her teeth after dinner and they will get misplaced. So we will assign someone to make sure and put them in a safe place. (This is an urban legend in our family.)
Same with Aaron–just add, subtract, and/or change a couple of extra things to make him feel comfortable. Modifications and adaptations are for everyone.
We still haven’t decided if we’re going to the family reunion or not.
In the comments below share some of the modifications and accommodations your family uses to make sure the oldest, the youngest and all the relatives in-between have their needs met at a family reunion?
Going to the Family Reunion, or not? Part 1 first appeared on my Climbing Every Mountain blog. It is the first of three parts.
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.
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?
*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?
Anyone can be a Father, but only someone special can be a Dad. (anon.)
“Love is that condition in which the happiness of another person is essential to your own.” (Heinlein, Stranger in a Strange Land, 1961.)
What is a Father’s “unconditional love”?
Many people have trouble explaining “unconditional love” and “fathers.”
I remember one Hallmark commercial where an older dad said he really only understood a father’s love when he saw his son holding his new baby–his grandchild. We were fortunate to see our son, Tommy with his new daughter. That is one amazing moment and made our hearts burst with love and pride.
But when I think of my husband Tom, and the harder love, the real unconditional love, it is when he is with Aaron, our oldest son who has the label of autism, intellectual and developmental disabilities.
Love is in the details, not the traditional big events like a new grandchild. It is in the demanding-ordinary-daily-love Tom pours into making Aaron’s life “normal” and “special” at the same time. Doing things that have to be done, when you would rather do other things.
Here is today’s example:
Dad picked up Aaron at his house at 8:30 AM today. The caregivers are going to a family reunion, so we want to give them some additional time off. After checking on his meds, asking about his toileting, Dad talked to the caregivers about our recent visit to Aaron’s medical doctor. Tom tells the staff, “Yes, you have to get the prescription filled.” And “Yes, this is now Saturday and we went to the doctor on Monday. What’s the problem?”
Tom then brings Aaron home to our house, takes him to the bathroom, cuts his fingernails, throws in some laundry (I’m still recovering from my surgery) and after an hour takes Aaron to get a haircut, go to the grocery and treat Aaron to a hamburger. Mom gets to stay home and hang out on the computer.
Later today we plan on taking Aaron swimming, and then seeing Tommy and his family to celebrate Father’s Day. We’ll take Aaron back to his house about 8:30 pm.
Dad is hoping to catch some of the US Open Golf Tournament on TV, but he fits that in between Aaron’s care.
Sure, as we celebrate Father’s Day, we’ll give Dad a couple little presents. I’m sure our granddaughter will give him a big hug and card too. But the “Bagel Guillotine” slicer, some peanuts for the ballgame and a new golf shirt will never be enough thanks for all the love and devotion Dad gives to his sons–every day.
Happy Father’s Day Dad! We love you unconditionally too.
Amplify the positive outliers
This week Seth Godin wrote an interesting post about creating change. He suggests that the easiest way is to “Amplify the positive outliers.” In other words, we don’t waste our time “extinguishing bad behaviors” and instead find “positive deviants,” positive examples of what we are trying to do and then “give them a platform, a microphone and public praise.” Seth says by focusing on our success stories and celebrating our superstars we will change our culture and strengthen our tribe.
In our Climbing Every Mountain community and other tribes of “inclusion” and “normalization,” we face daily examples of people promoting and building segregated schools for children with autism, segregated adult day (wasting) programs, even a new segregated “handicap only” baseball field. These are downright depressing and steal our energy and spirit.
So let’s begin thinking of positive examples and naming our “positive deviants.” In fact, most of the advocates and parents I know would like to be called a “positive deviant”—Yep, fits our label system just fine? Maybe we should be pushing the psychologists to adding that to the DSM, might make better reading than saying parents are still stuck in the grief cycle, eh?
Inspirational Video of people who changed the world
Enjoy this one minute of thinking about “The Crazy Ones” who helped change the world. If I was making a video, I would start with the above picture of my husband Tom and Aaron, the kid with all the labels–including “son.”
Some of the other Superstars in our life who would be in my video are: Annie Bauer, Michael Valdini, Dennis Burger, Colleen Wieck, Lou Brown, Anne Donnellan, Ed Roberts, Bob Perske, Tommy and Ana Ulrich, Mary Ann Roncker, Debbie Wetzel, Patty McMahon, Madeline Will, Patty McGill Smith, Patti Hackett, Leanne Bowling, Alison Ford and many others.
Join in the Fun
This post is dedicated to all the Superstar Dads out there who are changing the world.
In the comments, tell us: If you made a video of your “positive deviants” who would be your superstars? Not just dads, but parents, teachers, professionals, self-advocates who you think have changed our world? Who are the people who have moved us from segregation and given us the dream of an inclusive life with our families and terrific dads?