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Archive for July, 2016

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

Supportive Living: What an inclusive day looks like.

A Good Day!

Aaron swimming

Aaron swimming

As the number of adults with autism and developmental disabilities rise, many professionals and parents ask me what I am looking for? Will I ever be satisfied? Is it just a pipedream or can we really build an inclusive community around a person with severe disabilities? Can there be a combination of natural supports and paid supports? Does the family have to do it all? Can an adult with autism have a decent quality of life and be happy?

They tell me it doesn’t really make any difference to Aaron, my son with severe disabilities and autism. Their logic says that since Aaron can’t talk, and therefore can’t complain, it is only the mother (me) who has these high standards and expectations and Aaron is just fine and the mother is well, you know, ….

Many times, they tell me how lucky we are… Aaron has a Medicaid Waiver when there are hundreds of people on the waiting lists; Aaron lives in a nice house close to his parents–not in an institution in another city….

The media is full of stories about desperate families of adults with autism and intellectual disabilities: abandon your child to get services — To the parents and professionals who want to give up or “re-institutionalize,” Can we prove inclusion in the community can work?

Many nights these tapes play in my head over-and-over keeping me awake. I ask myself what else I can do to make Aaron’s life more inclusive.I count my blessings.

We are lucky. We’ve worked hard to be where we are, but there is still much to do.

But last Sunday, I went to bed and smiled: “Today Aaron had a good day!”

Here is what this inclusive day looked like:

Aaron’s dad picked him up at 9:30 AM from his house. He talked with K-, Aaron’s long-time caregiver. K- knew when Aaron had had his last BM. K- had given Aaron his breakfast and he was dressed in his Sunday clothes—hair combed, shaved and teeth brushed. He looked like a typical 38 year old.

Aaron came to our house and immediately got his favorite books from the closet. His dad and I sat near him in the living room. Aaron put his books on the coffee table where he turned the pages in two books at one time. When he wanted more books, he went to the closet, chose his books and carried them to the table. (I know this doesn’t sound like a big deal, but because of Aaron’s severe motor and balance issues, this is something we have worked on for years and years.) He also went to the fridge and when I ask if he wanted the pitcher of ice tea or the juice, he pointed to the ice tea.

When he got tired of the books, he went into the kitchen, sat at the kitchen table and we ate our spaghetti lunch together. Aaron put his dishes in the sink.

At approximately noon, Tommy and Isabella (Aaron’s brother and niece) came over. We all changed to our swimsuits, lathered up with sunscreen and walked to the pool at our condo.

Dad started with Aaron in the deep end and Tommy stayed close to Isabella with her floaties. Sometimes we were apart, sometimes we all played ball together and Isabella would swim between Uncle Aaron and Grandpa.

The other families each did their own thing, but we all crossed paths in a friendly community sort of way. There were about 8 other neighborhood kids and their parents in and out of the pool. They all said hello and though we didn’t really know any of these neighbors (it’s a big complex) they were friendly to Aaron and interacted as anyone would. I introduced myself, Tom, Aaron, Tommy and Isabella and hope we will see them again next week.

After about an hour or so, we headed back home, changed clothes and everyone had a drink and ate cheese and crackers.

Isabella wanted to play Hide and Seek in the house (her favorite place is under my desk) and Aaron and I would count to ten and then go and find her. Isabella loves to hide, but then she giggles so much it is easy to find her. Aaron enjoyed the game the first couple times, but then Isabella wanted more and more and so he just sat back on the couch with his books and watched.

About 4 o’clock, Tommy and Isabella left to meet Ana, her mom, who was getting off work; Tom, Aaron and I took a ride to the post office and grocery.

At 5:30 we took Aaron back to his house and K- and his wife were waiting for Aaron to take him to King’s Island, an amusement park. We took him to the bathroom, washed his face and hands, checked his shirt and hair and again exchanged some details about how Aaron likes the Octopus and train ride and …

Aaron got in their car and they were off for the evening. Tom and I went back home.

Too much to ask?

Now, I ask you… is this really so difficult to visualize?

If it was only paid staff, Aaron’s parents are dead or out-of-town, could the staff figure out how to fill up a weekend afternoon with some friendly faces and meaningful activities in the community?

Would Aaron be groomed and the staff person look at his toileting schedule so he is comfortable? Would Aaron be in status enhancing clothes that were clean and age-appropriate so he could blend into the community?

I know K- can do it, because he and his family have known Aaron for years. But I can’t understand why other staff don’t get it.

Aaron is currently between roommates, so right this minute, he has 1-1 staff. This is the best opportunity of his life for getting out into the community, when he gets a roommate it will be 1-2 people and much harder to take them out.

Focus on the positive

Today I have a reason to feel good about Aaron’s life. We all shared a pleasant summer day. Aaron and our family did what many other families were doing all over the city. Aaron was surrounded by people who love him and care about him. We celebrated his self-determination to make choices and do activities he likes. Aaron used the skills he learned in his 22 years in school and therapy. Aaron had staff who were willing to try and give him a good time. Aaron was healthy and happy. I only saw him bite his hand one time all day. The activities were in his home community. There are future opportunities for building a network of long term support and acceptance.

And this is inclusion. This is our vision for Aaron. This is the future we hope for our son. This is all we are asking for. Carpe Diem!

COMMENTS

Come on, share what you are thinking. Am I being unreasonable to expect these kinds of days? Should I just accept “reality”? Do I just count my blessings? Do you have similar experiences? Should we go back- and re-institutionalize?

Keep Climbing: Onward and Upward
All my best,

Mary

Related Posts:

Aaron needs a roommate

Aaron’s Dream Plan #4

Going to the Family Reunion