When Schools Say “NO” to Inclusion

When Schools say “NO” to Inclusion

The Inclusive Class Podcast presented a panel with Tom Mihail, Paula Kluth, Torrie Dunlap, Lisa Jo Rudy, Frances Stetson, Kathleen McClaskey and myself.

The Title was: "When Schools say 'NO' to Inclusion"

Topics include Universal Design, Technology, Differentiation, Inclusive after-school and community recreation, and in the last few minutes I talked about Inclusion as a Civil Right and strategies for getting inclusion with your IEP.

Below is the supplemental material for my topic. If you have any questions please contact me.

Here is a recording of the broadcast:

Listen to internet radio with The Inclusive Class Podcast on Blog Talk Radio

So, you are sold, you have heard all the information about inclusion, you know in your soul this is what would be great for your child. You talk to the teacher, the principal, anyone who will listen and they tell you it won't work for your child, it's a passing fad, it is too expensive, it will hurt the other kids in the school...blagh, blagh, blagh.

What do you do?

Here are the 5 Points I outlined in my part of the panel:

1. Learn the History of People with Disabilities.

Legal Segregation

Society and Schools have been saying “No” to Inclusion for hundreds of years for many people, not just for people with disabilities.

1800-1900s. Institutions and Forced Segregation were common for those with the labels of mentally defective, feeble-minded, idiots, uneducable and untrainable. Individuals and Parents had no say. People who were different were removed for the health and safety of the community.

Today we still have prejudice against minorities, young women who are unmarried and pregnant, gang members, young people who are gay or lesbian, immigrants, poor, people who don't speak English, Native Americans, homeless, children of migrant workers...

Our society is more diverse every day, we need inclusion for everyone.

Parallels in Time: A history of people with disabilities

Parallels in Time 1 and

Parallels in Time 2

Check out the section in Parallels 2 A PLACE TO LEARN.

(Page 59-60 has the definition of Inclusion)

(p. 61 has reference to Paula Kluth and a picture of my son Aaron)

Inclusion is a Civil Right

14th Amendment:

“The 14th Amendment to the Constitution was ratified on July 9, 1868, and granted citizenship to “all persons born or naturalized in the United States,” which included former slaves recently freed. In addition, it forbids states from denying any person "life, liberty or property, without due process of law" or to "deny to any person within its jurisdiction the equal protection of the laws.” By directly mentioning the role of the states, the 14th Amendment greatly expanded the protection of civil rights to all Americans and is cited in more litigation than any other amendment.”

Reference:

Questions the Courts had to decide:

Citizenship: Is someone who has an intellectual or other disability, a person? (consider the slaves, Native Americans, women, immigrants, prisoners…)

Due Process: If you have a disability, do you have the right to due process? (consider people with physical, intellectual disabilities, people who are deaf, blind… can’t read/write/talk, people who can’t pass IQ tests…)

Equal Protection: If you have a disability, are you entitled to the same rights and benefits other people have? (go to school, live in community, get jobs…)

Consider the implications:

Plessy v. Ferguson (1896) Separate is equal. 50 years of Jim Crow Laws.

Brown v. Board of Education (1954) “Separate is inherently unequal.”

Fascinating Reference:

PARC Class Action Case: A Game-changer

(Interviews with Tom Gilhool and Gunner Dybwad are also in Parallels in Time 2)

Video and transcript Tom Gilhool at Temple University:

Testimony of Tom Gilhool before the Joint Subcommittee Hearings on “the Events, Forces and Issues that Triggered Enactment of the Education of All Handicapped Children Act (EHA) of 1975” in TASH newsletter, 1996 p. 11-15.

Excerpt about PARC decree and 94-142: Teacher Training and Best Practice

The Requirement that Schools Know and “Adopt” “Effective” “Promising” Practices. Requires the delivery of an “effective” education. One, the Act (EHA) requires states and districts to see to it that all teachers, both “regular” and “special” are fully informed of and continuously trained in “promising practices” in the education of children. “Second, the Act requires every district as well as the states to “adopt promising practices’ Third, the Act’s requirement of “a free appropriate public education has been help by the Unites States Supreme Court to mean an education “reasonably calculated to enable the child to achieve education benefits”
Hudson v. Rowley, 458 U.S. 178, 203-04V (1982).

NOTE: Remember to NOT just look at the current regulations, go back into the Congressional Hearings before each law was enacted, the legislative history, court cases…

Other Court Cases:

“Inclusion is a right, not a special privilege for a select few” (Federal Court, Oberti v Board of Education).

You will want to quote the most relevent and recent cases.

2. Become an Expert on IDEA

The best resources I know are Partners in Policymaking’s series of lessons on IDEA.

Free, online, study at your own pace.

National Dissemination Center for Children with Disabilities (ages 3-22).

3. Build Alliances

Focusing on the dignity and goodwill of the people you're working with. Build trust. Create a common vision.

Partners in Policymaking has programs in almost every state. The courses are designed for parents of young children and self-advocates. New groups start every year and are usually funded by your state DD Council. On the Partners website, find your state liaison.

NICHCY has a list of organizations and Parent Training Centers in each state. Find people both on the National, State and Local level who think like you do and can help.

National Dissemination Center for Children with Disabilities (ages 3-22).

National Organizations for Professionals often help parents and teachers. TASH helped me. I know the ARC, United Cerebral Palsy and National Down Syndrome Association have done advocacy work. I’m sure there are others.

Check out your local university. Sometimes you can find a professor or student who can help.

In our particular situation, because no group existed-we started a parent group in our local school district.

Set group goals: start an extended school program in the summer; make the buildings more accessible with universal design; start an after school Job Club and Key Club at the high school. By focusing on specific goals we were able to get local grants, publicity and see tangible results for our children.

NOTE: In hindsight, I would have made this an ad hoc committee of the School PTO or General Education Parent Organization. I would ask parents and teachers of general education students to be on this committe so it is inclusive. 20 years later, duh, it is so obvious.

Univ. of New Hampshire has great programs and resource materials.

Clay Aiken's Inclusion Project. This looks good, but I haven’t tried it.

4. IEP: Educational Evaluations

The first part of the IEP process is getting evaluations of current level of functioning and setting specific individual goals.

Be creative. Don’t let the school psychologist run the show.

Have your IEP team decide what kind of evaluations they need in order to have your child make educational progress in all the school environments.

There are the formal evaluations that are the traditional testing tools of the experts. And, there are the individual informal tools also designed by experts, but cannot be standardized and put into multiple choice answers.

Informal Evaluations

1. Person Centered Planning, Circle of Friends can supplement the formal evaluations and look at social relationships, before-during-after school-weekend-summer activities, this can also be used for team building, communication, transition and long term planning.
http://inclusion.com/ Where inclusion began, great tools.

2. Educational Evaluations

Educational Evaluations are usually conducted by a teacher or other educator with the appropriate teaching license.

Educational Evaluations look at an individual person in their life spaces. Aaron’s evaluation started in his home, followed him on the school bus, in the classroom, in the lunch room, bathrooms, gym, after school activity and back home. The evaluation compared Aaron’s current level of functioning in each environment and then made suggestions for IEP goals.

For instance, the educational evaluation shows the "individual benefit" for Aaron. Not the whole class or school, just Aaron.

The Educational Evaluation determined Aaron, with accommodations and related services, could be in an inclusive class. What supports would he need? What supports would the teacher need? How would the curriculum be differentiated? What technology? Universal design strategies could be used?

See the difference between this sort of evaluation and a traditional IQ or standardized test?

Who Pays?

The tricky part is that if the parent pays for the evaluation, and chooses their own “expert,” then the school district only has to “consider” the recommendations.

If however, (at least this is how it used to be), if the parents or teacher ask for an evaluation, and the school district agrees to pay for the evaluation, then they have to use that evaluation to develop the IEP, or if they disagree, they have to get another evaluation saying the first evaluation was not appropriate, and why.

If you go to court, the educational evaluation can make all the difference. If you are writing IEP goals, the educational evaluation gives you a practical starting point for goals and objectives. (The conversation is NOT about "Should we do this?" but rather, "How do we do this?")

And, if the parent does pay for the evaluation and “prevails” in a due process hearing then the school district has to pay. Of course, it goes both ways and is risky because if the parent loses, then the parent has to pay.

How do you find an expert?

In our due process hearing we used our contacts from TASH (a national organization) and one of Lou Brown’s graduate students from the University of WI-Madison. This process was repeated several years later when Aaron was in Junior High, and again when Aaron graduated.

We also used local university graduate students and county respite providers when appropriate, ie. They did independent studies to help us design an after-school program and going to the prom.

If you are going due process, find out who the expert is in the area you are challenging.

Check out professional organizations, journals, university faculty. Who is going to know how to do the job? Who is willing to testify? Who will impress the hearing officer?

5. Be BadAss Confident

Know what you believe and how far you are willing to go.
Even if you are uncertain, typically shy and withdrawn--you have to act fearless.

This is your child, This is your class, the time is NOW!

When people see you walking in the grocery or in the school you want them to see you and immediately know what you stand for: “All means All”—“Inclusion means Belonging to the Community.” You have to model what you want others to do.

Build trust, convert the doubters. It can be done--and it's up to you. And, you will join the thousands of other parents and advocates who have made a difference for one child or many and have moved history and inclusion forward.

Segregation and Inclusion by Zip Code

In my opinion, this is why we need a national policy, federal laws and oversight.

Vulnerable people with disabilities and other minorities should not have to reinvent the wheel, every year, in every city and county.

Do we want individual states and school districts to make decisions about segregation and inclusion?

Would you want to live in Mississippi, Alabama, Louisiana… and I include Ohio?

Different school districts have different definitions of inclusion. I recently visited what was called an “Inclusion School.” To my shock, the principal proudly told me, “Inclusion means EVERYONE in the school is on an IEP.”

After we won our due process hearing, we moved to a neighboring county where the school district shared our values.

The move was the best thing we ever did.

First, after we won our due process hearing, it was like Aaron had a tatoo on his forehead that said, "Don't mess with me."
Our reputations guaranteed they took us seriously.

Second, I got elected to the County Board of Developmental Disabilities. One of the proudest days of my life was when I got to make the resolution to close the segregated county school.

Third, because the school district was good for Aaron, it was also
an excellent school district for my other son who had the label of "normal."

Bottom-up; Top-Down: Baby Steps

You can achieve Inclusion from the IEP process: bottom-up.

But it is easier to work from the top-down.

Try to get on influential committees, or find allies in leadership positions that will work for inclusion. If your school board and/or school administrators embraces the Inclusion paradigm, and understands how this will be better for all students, then you are well on your way.

Try to get inservice for staff, parents—both general and special, about inclusion, differentiated instruction and universal design.

Baby Steps:

I like to think of a yard stick. On the one end is segregation, on the other is inclusion. If I think an action, a decision, anything... is a step in the direction of inclusion--I accept it. There is always tomorrow.

Celebrate each small victory. There were many times when I had to take a deep breath and tell myself, "This is the best we can do today. Be happy."

Moving Toward Inclusion by Michael Giangreco.

Last Thoughts

I wish I had a magic wand to make it easier for each of you.

Twenty years ago, we thought this would all be figured out and our children would just be children, parents could just be parents, teachers could just be teachers.

There is an old "Up With People" song that says, "Freedom isn't free. You've got to pay the price, you've got to sacrifice for your liberty."

Wishing each of you, freedom, libety and inclusion.

I hope you will share your thoughts in the comments.

Keep Climbing: Onward and Upward
All my best,
Mary

Related Blog Posts:

Note: Since this whole website is about inclusion, almost every article tells part of the story. Some are about school issues, many are about adult issues. Here is a sampling:

What is Inclusion?

Dream Plan 1 for Aaron, Normalization

Dream Plan 4: Aaron is an adult

The Race Toward Inclusion: Do you see it?

Better than Church

Building Community| One grocery trip at a time

Test Questions| segregation or inclusion?

The Animal School| Differentated Instruction

Going to Family Reunions? Shave your armpits

Going to the family reunion, or not?

part 3.

access ramps shout \”Welcome\”

Absolutely gorgeous day for a family reunion at the swim club, the mid-80s, no clouds, not even any bugs to speak of. This is my third post about Going to the family reunion, or not? In post one (click here) I talked about planning and doing an evaluation of what my son Aaron, who has the label of autism, would need in terms of modifications and accommodations to feel welcome and included. In part two, (click here) I wrote about the layers of social systems that are part of each family. Today in part 3, I’m going to talk about the actual activities and events that happened.

Informal Support Systems

Tommy (Aaron’s brother), Ana, Baby Isabella and Ana’s parents from Brazil arrived about the same time we were unloading the coolers, so they helped me carry the stuff and guide Aaron through the parking lot. My husband, Tom had to work so he had to miss this year. If Tommy’s family wasn’t here to help, Aaron and I wouldn’t have gone. I figure there were about 60 relatives ranging from my mom age 88 to Baby Isabella, one year.

Aaron started repeating his, “You Okay?” routine and everyone came over and gave him a high 5, patted him on the back, or laughed and said, “Yes, Aaron we’re okay.” They were welcoming Aaron on his own terms. Sometimes Aaron looked at them; sometimes he didn’t. He said, “You okay?” about one time every other second. So that’s a lot of “You okays.” Everyone just took it in stride and went back to what they were doing.

Setting up the routine

In past family reunions, everyone swam and then ate about 6 pm. So we arrived at about 4 PM to find everyone eating. Oops.

Even though we split an Arby’s sandwich on the way to the swim club, if everyone else is eating, you can bet Aaron is going to want to get a plate ASAP. I introduced Ana’s family the best I could, but getting Aaron settled and fitting in the social setting was priority one.

Almost immediately, Aunt Ann started putting melon balls on Aaron’s plate. Some male relative who I didn’t even know had the brats and metts ready to go, so with a little help, Aaron was happy as an ant at a picnic—aarhh. How Aaron melded into the group in the first ten minutes makes all the difference.

While Aaron was busy eating, the rest of the family settled in, made introductions and even though Ana’s parents’ first language is Portuguese, everyone was excited that they were here for a visit. Various Aunts, Uncles, Cousins, second cousins and relatives I swear I’ve never seen before, were all very gracious. Ana’s parents are just naturally friendly and their English is incredible. (They learned it by watching American movies and taking English classes in high school.)

As soon as Aaron finished eating, Aunt Ann cleaned up Aaron’s spot. Uncle Steve and Tommy offered to take Aaron swimming. I didn’t even have to ask. They helped him put on sunscreen, take a quick trip to the bathroom and then just whisked him off (of course Aaron doesn’t really whisk anywhere).

Terri, my cousin who organized the whole event, told us that the neighborhood swim club was just given a ramp by the Jewish Community Center when they built a new facility. (Note to self: next year do not take off Aaron’s shoes until he gets to the ramp—the sidewalk was too hot and he had trouble walking to the ramp.)

Aaron, Tommy, and Uncle Steve went in the big pool. Ana, her parents, and the baby went to the baby pool. I took pictures and held my breath. Aaron had a couple of tough moments, but he calmed himself by biting his hand and then was fine.

I got to talk with a couple of people, and watched everyone playing in the water. Aaron can swim pretty well. He does this sort of dolphin movement and though he doesn’t close his mouth he can swim from one side of the pool to the other. The lifeguard watched Aaron and his team the first couple minutes and then when everything looked in control, he relaxed and just concentrated on the entire pool as usual. After about half an hour, other relatives and Ana’s parents joined everyone in the big pool. Baby Isabella had a great time meeting new cousins and playmates. The toys went in and out of the pool, the kids stood up, fell down—all was well with the world, just a sunny day in paradise.

The Circles of Life

Everyone caught up on the recent engagements, school arrangements, camping trip, new babies… all the gossip and family changes. Ana made a Flan dessert which was a big hit. Someone brought about five of those blue ice containers and put them together like a cold plate—instead of a hot plate—and I thought that was very clever. Everyone ate, traded stories, pictures, and just had a great time.

Uncle Ed

Uncle Ed’s memorial dinner was the next day, but my cousin Dan, who is a Bishop, came and ask about how Aaron was doing. How was Tom doing? (When someone in the family isn’t there, they are missed.) We got to tell the story of how Tommy surprised us by moving back to Cincinnati last year… it was just normal, everyday family talk.

Because of people helping out with Aaron, it was an enjoyable day. We left after 4 hours, just long enough.

Worth the price of admission:

My favorite moment: One of the dads was holding his two-year-old baby in his lap. The baby had an angelic face and a devilish grin. They were relaxing after a swim when the baby suddenly reached up and grabbed the hair under his dad’s arm. OUCH! His dad—I mean you could hear him gasp and see his eyes tear up-couldn’t reach his son’s hands. Every time he tried to lower his arm, the hair was pulled tighter. We were all laughing so hard everyone’s body was shaking up and down in their seats. Grandma looked like she would need oxygen. The more dad tried to pull the baby’s fist away, the tighter he squeezed.

I thought the lifeguard was going to blow the whistle from all the hoots and hollers. It was a memorable moment that will become an urban legend in our family as the repetitions help the story grow. (Remember, Mark Twain, said to never let the truth get in the way of a great story.)

Summary:
All our planning worked. Aaron and all of us had a great time. He belonged. We all had a chance to reconnect to all these people who are connected by blood but now are also connected by new memories.

Moral of the story: shave your armpits before going to family reunions:)

Did you ever think of all the modifications and accommodations we just naturally make for babies, seniors, people with disabilities? Baby bottles need to be kept cold and then heated, Grandma likes soft foods, Uncle Charlie always likes a ball game on a radio or TV– we make these kinds of modifications all the time just because we want to make the people we love happy and comfortable.

And what about us regular folk, we also use modifications and adapt environments and “things” all the time. We bring our lawn chairs, sunscreen, ball gloves to protect our hands… we like our hotdogs with… spicy mustard, or ketchup, or sauerkraut or well done or on buns, or not …?

We don’t think of these small ordinary “things” as adapting a hot dog? Because we are all normal, yet it is what we are doing.

But putting in a ramp or curb cuts–well, even if we normal folks use it, it is er, handicapped or special or an ADA adaptation.

When builders use the principles of “universal design” and blend the adaptations into the everyday way we access buildings or swim pools… then parents won’t have to think of ecological assessments before they go to a family reunion, everything will already be in place.

ADA is good for all of us. i.e. Now most grocery stores have accessible entrances. Grocery carts and children’s strollers and people in wheelchairs can just go through the front door. And, since it is now so common, no one even notices that the entrances have changed. They meet “universal design” for EVERYONE.

The world is becoming more accessible and just in time. Because me and all my relatives are getting older and like it or not, we will soon join the ranks of the “disabled” and our life activities will depend on all those loving people around us, and those universal designed environments.

Tell us in the Comments

What are some of the things you do to make your family reunions more inclusive? What do you think of Universal Design? Is ADA just another government example of “Big Brother” and forced rules and regulations?

Keep Climbing: ONward and Upward
All my best,
Mary

Systems Theory| Family Reunions part 2

This is Part 2 of a 3 part series:

Going to the family reunion, or not? Part 2: The Circles of Life

See Part 1: Going to the family reunion, or not?

See Part 3: Going to the family reunion? Shave your armpits.

The Circles of Life

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:

*the individual,
*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

Uncle Ed

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.

Macro System

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?

Keep climbing, onward and upward.

All the best,

Mary

Going to the family reunion, or not?

Part 1

Going to the family reunion, or not?

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.)

Swimming:

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.

Restroom:

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.)

Eating:

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.

Behaviors:

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.

Summary:

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.

Part 2 will look at the family reunion through the eyes of Social Systems Theory (don’t worry, it’s not as boring as it sounds). https://climbingeverymountain.com/going-to-the-family-reunion-or-not-part-2-the-circles-of-life/

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.