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Going to Family Reunions? Shave your armpits

Going to the family reunion, or not?

part 3.

Absolutely gorgeous day for a family reunion at the swim club, 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 6pm. So we arrived about 4PM 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 tough moments, but he calmed himself by biting his hand and then was fine.

I got to talk with a couple 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 a 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 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 dad’s 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 life guard 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, sun screen, 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?

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 son Aaron has the label of autism and developmental disabilities, we try to include him in our family activities. Now that he is almost 37 years old, 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 gain control of the environment we are going to visit. In this case, a local swim club.

Ecological Assessment with Commentary:

Swimming:

There is a great neighborhood swim club. 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 40 years ago when we were teeny-boppers dripping Popsicles and walking around hoping our swim suits didn’t make us look fat. (Oh, to only be as “fat” as I was when I was 12.)

Aaron likes the water and is a pretty good swimmer. Last reunion, my husband Tom and my brother Steve played beach ball with him and stayed close, so he will be safe. If we lather him with sunscreen his fair skin and freckles will be protected from burning. 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 that night. (Because Aaron swims with his mouth open, he might swallow a lot of water and then wet the bed later that night. We will make sure he gets up a couple times at night and we do have a double mattress pad protector.)

Restroom:

There are two separate restrooms and changing facilities. They have shower curtain doors so I would be able to take Aaron in and change him. 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 swim suit, 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 in case of emergencies.

Eating:

Aaron eats most anything so the pot luck buffet will be great. Cousin Ray will grill hamburgers…. I will bring something that doesn’t require any work. 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.
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 meal time. 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. We’ll make sure someone is with him at all times but trade off so we can talk to some of the relatives.

Summary:

This post is to show what an ecological or environment 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 there, or Great Grandma Stella then 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 extra things to make him feel comfortable.

We have been to this swim club before, if we hadn’t, we would have gone a couple days before and scouted it out. Most people don’t like surprises or change. It is not a coincidence that major chain stores like Krogers or WalMart are all laid out the same way. Each of us like knowing the lay-of-the-land. There is comfort in familiarity.

We still haven’t decided if we are 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). http://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?

Keep Climbing: Onward and Upward
All my best,
Mary

What is Charity and Love?

I’ve fallen, and I can’t get up
Creative Commons License photo credit: djwhelan

Every day we read about good people planning charity events for people with disabilities.

I’m not sure how I feel about this.

Wait! You are wondering how I can be an advocate for people with disabilities and not just jump up and down when two caring people are trying to raise funds for people with disabilities?

Let’s just say, “It’s complicated.”

My first fundraiser was when Tommy was an infant, Aaron was 20 months old and still not sleeping through the night. Two hours a day, I would drive them across town to Stepping Stones Center for the Handicapped. Perfect time for me to volunteer to lead the fundraiser, eh?

What pushed me into action was there were about 30 babies in the Stepping Stones program and no teacher. Sure there were amazing volunteers. But these children, who needed so much help, did not have a qualified teacher. I found that unacceptable. I could sleep in a couple years.

Community Fundraisers

The local shopping center was having their annual charity craft show. At the organizational meeting, I gave my impassioned speech, we were chosen the “designated charity” and then for the next month all the parents, grandparents, friends and neighbors of the “Tiny Tots Program” spent our free time making items for our booth. We raised about $3,000 which was then matched by the organization and an official “teacher” was hired.

Special Fundraisers

After that there were the fundraisers for The Mother’s of Special Children and the Arc (formerly known as the Association for Retarded Children), and TASH (formerly known as The Association for People with Severe Handicaps) and on and on.

I met other mothers (mostly) and we had many good times, but I started asking why we had to have charity drives to fund important services other children in the community took for granted.

Regular Inclusive Fundraisers

After our court case and Aaron was finally allowed to go to public school, I got involved in the regular school PTO fundraisers. There were spaghetti dinners, White Elephant sales, Dances, Raffles, Magic Shows, Motorcycle Rides, Bake Sales, Races for… and saving boxtops, cans… It goes on and on.

I learned about inclusion (click here) and realized we didn’t need a “special track team” we only needed an extra support person to help Aaron to participate in the track team events.

“Disability World” Fundraisers

This led to more committees, grant writing, working for levy’s for the County Board of Mental Retardation and Developmental Disabilities as well as the regular local school district.

Other parents got to have jobs and earn money to help their families. I got to be the only non-paid person at numerous committee meetings.

Now, we did some great things that wouldn’t have happened without the volunteer parents. We began an after-school club and a summer school program so our children would have something to do and not lose all the skills they gained during the school year. We started four non-profit groups and incorporated. Yes, indeedy, sleep would have to wait.

But it never ends.

It is my feeling many of these organizations spend their energy insuring their own jobs and pay and giving lip service to the support of people they are supposed to be serving.

Autism Speaks, March of Dimes… are currently under fire because one of their main reasons for existence is to raise money to wipe out people with autism and developmental disabilities. They want a cure and spend much of their funds on sending Medical Doctors to conferences and conducting research.

But what about the people who are here now? These professionals, who make good salaries, have their way paid to conferences. Parents, who volunteer, not only pay our own way–we are supposed to donate to send the doctors? Plus, their executive directors make big big bucks. When I learned what some of the executives of these charities were making–that was it.

When it is all about charity, then it is all about the person who is giving the money. When it is about a person’s life and rights, it is about the person with the disabilities.

There are some large organizations who understand this, but most don’t. Here’s a post on my experience outside my grocery store (click here).

Everyone wants to help babies and young children

I know Aaron’s life was more interesting because of my leadership and volunteer work. But now he is an adult, and there are even fewer opportunities. Babies are cute and helpless and of course we want to help. But the majority of our lives we are adults. That’s 20 years as a young person and maybe 50-60 years as an adult.

So, I don’t do much volunteering for charitable organizations any more.

I spend every moment of my life working directly with the people with disabilities or the caregivers on the front lines. The ones who make little more than minimum wage. The people who take Aaron to the bathroom and clean up his messes. The people who celebrate Aaron’s diversity and think he’s a pretty neat guy. There is no tax write-off, no non-profits. Just people who care and need resources.

Segregated Charity–charity gone wrong

I don’t believe in onetime events like, “People with Disabilities Come to Church Sunday” where the church rents a ramp for the weekend (I couldn’t make this up). I don’t believe in Special Olympic Golf Fundraisers, when they won’t let Aaron even ride in the golf cart (“Oh, honey we just raise money for these poor children, we don’t actually want them on the course.”–couldn’t make that up either.) I don’t want Girl Scouts showing up at my door saying they want to play with my child because it is Lent and they have to do penance (some day I’ll share the details on that one.)

Rights–not Pity

As Joe Shapiro wrote in his classic book, “NO PITY.” People with disabilities don’t want to be the object of other’s charity. People with disabilities have needs, but they are citizens with rights. They don’t want the handicapped parking place because you are having pity on them. They want the handicapped parking place because as a citizen and consumer, they need the extra wide space so they can get out of their car. And, as an American, I’m proud our country recognizes that right to equal access.

If we really want to help people with disabilities–don’t give them your dimes. Instead make room in your lives and give your love..and your friendship. That is the best gift and, I believe, closer to the Biblical definition of “charity.”

Like I said, this is complicated.

Thoughts?

What are your experiences with charity models? With helping people with disabilities? What does it feel like when you are the giver? When you are the receiver? When do you feel pity? Charitable?