Down by the Ole Mainstream

This story is from 1981 when Aaron was 7 and Tommy 5. We were in the middle of our lawsuit against Cincinnati Public Schools to allow Aaron to be able to go to public school. Enjoy.

At the end of our street is a pond. Our family often takes walks down there to see the ducks and give them bread crumbs. One day last summer, an old man was down there and said: “Did you see the handicapped duck?”

Well considering I was pushing my seven-year-old son with a severe disability in his stroller, and considering the 24 hours a day I spend thinking about people with disabilities–this was really too much.

The friendly man went on, “Probably a frog ate his foot or maybe he caught it on the fence…”

Sure enough, there were about 40 ducks and one duck was missing his foot and about one-half of his leg. The duck hobbled toward us but when Tommy tried to pet him he scrambled for the bread crumbs with the rest and then swam away.

Before we left, we did throw him some extra bread crumbs just because we wanted him to know we were friends who understood life’s little extra challenges.

I went home and joked to my friends that at least some humane society didn’t come and set aside a special pond for disabled ducks, start a supplementary training program and segregated nesting area–or some exploiter didn’t take him to Utah and enter him in some freak show for tourists.

We checked in once in a while over the winter, but I really was a lot more worried about people with disabilities than the ducks. We were trying to mainstream Aaron, into a public school. (This was before “inclusion” was thought possible.)

Yesterday the weather was warm so we walked to the pond and saw there were only about 15 ducks. We were only there a minute when that same man came running down full of concern. He told us someone was catching the ducks, putting them in plastic bags, throwing them into the middle of the lake, and then watching them drown.

We were shocked. Who would do such a thing?

Meanwhile, the few ducks that remained came swimming toward us looking for the breadcrumbs. Guess What?

The “handicapped” duck was among the survivors.

I’m not sure what this all means or why I thought to write about it, but with all the cutbacks and anything else they can think up–I think the duck gave us a message–we’re going to make it. There are some mean horrible people out there, sure. But there are also wonderful people like the man who cared for the ducks. There is risk in being in the community–but that is also where there is safety.

This week Aaron learned to peel his own banana, he went boating and he saw a “handicapped” duck that was smarter than the non-handicapped ducks. We also just need to get smarter.

The dream… it lives!

Quiz: For those of you who read the story about the difference between disability and handicapped (click here) and tell me. Did our duck with the one leg have a disability, a handicap, or both?

Share your Stories of Hope

What helps keep your dreams alive? Any duck or pet stories?

Parents and adults with disabilities: balancing my child’s needs and mine.

Balancing my life vs. my child’s: Until my dying breath…

This is going to be a tough post. I might chicken out and not even publish it. I don’t want it to be a pity party: “You parents go through so much. You are Saints.” God Forbid!

See Aaron playing the key?

I am hoping this message will give other families a chance to take a breath and allow themselves a little slack. For those of you who are professionals, I hope it gives some insight into the choices families make–usually at a cost.

Families make hard choices all the time

All parents of young children, and adults who are caring for their elderly parents experience these same dilemmas. The sandwich generation is a well known problem in our culture and effects most families.

What is different for parents whose children are adults with disabilities? This intense care is usually not discussed or understood. It is not a time-limited situation where your child grows up or your parent dies.

Aaron is 39 years old and as I get older this is a growing issue. We are talking about–well, until my dying breath.

First Sign of Growing Old

I’ve been having lumbar back pain and had to begin a series of injections and other stuff. This is the first major medical issue I’ve ever had, so I have no right to complain. Plus my philosophy is that anytime a Doctor can actually “fix” a situation, I consider it a temporary problem and a medical victory.

BUT the bottom line was that for the first time ever I had to cancel Aaron’s doctor appointment.

I consciously chose my needs over my child’s.

I’ve had pain before, sure. But that has never stopped me, so why was this time different?

What was I thinking?

* There was the 50 mile round-trip drive to Aaron’s Doctor, the only one I trust who takes a medical card…

* Aaron goes every three months and didn’t have any major issues…

* We bring Aaron home with us every Saturday night. Whenever we take Aaron to the Doctor, we keep him both Saturday and Sunday nights and try to schedule on Monday morning…

* Monday mornings are the busiest day for the Doctor so there is always a long wait in a room full of sick people… Aaron is not a good “waiter”…

* I feel bad about the last minute cancellation to Aaron’s doctor, we try to be respectful of his time. If we have to pay the $30. charge, so be it.

* I always bring flowers to the receptionist in the Doctor’s office. She takes a special interest in Aaron and always gives him hugs and makes him smile. (I know, I know, amazing that I would spend energy on flowers for the receptionist–but she is one of the few people who get excited to see Aaron so that makes me happy too)…

* Going to the doctor takes a full morning…

* After the doctor visit we take Aaron out to lunch and then drop him off at his day program….

* Monday is the “community outing” day at the day program–so when they actually do what they say they are going to do (we won’t go there)…that means the group may or may not be in the building when we want to drop Aaron off…

* If the day program group is not there then we have to leave Aaron with the director who just puts Aaron with a book in a separate room and ignores him, a safety worry…

* The day program has Aaron’s noon medication, so the good thing is he will get his noon meds on time…

* The bad thing is I will have to be face-to-face with the director, who is a good person just has no resources. This means I will ask, “How is Aaron doing?” and the director will tell me they strongly think Aaron should be in diapers and have his meds increased… which will lead to… (let’s just say) be stressful for both of us and reinforce my reputation as “EVIL Parent and Day Program Public Enemy Number 1″….

I wrote this all out in stream of consciousness because this site is about climbing every mountain and mountains always have streams– did you like that analogy? 🙂 But, like most people, I think our conscious run streams of pros and cons with every decision we make.

Second and Third Thoughts:

I accept it, but I am not proud I made the decision to think of myself first. When we took Aaron back to his house on Sunday night and I was hardly able to walk on Monday morning I knew I did the right thing. There is no way I would have been physically able to give Aaron his bath, breakfast, and go through all the steps outlined above.

So Aaron will live, I’ll get better. But how soon will it be that either myself or my husband will have some serious condition where we require medical care and can’t take care of Aaron?

I look at Aaron’s housemate’s parents. They are in their 90s. They have done an admirable job, but age has now made them just as vulnerable as their son. Soon it will be my turn.

Damn! Why is this so hard? Why do I feel Aaron’s quality of life is ONLY in the hands of his family?

We are fortunate to have some good professional people in Aaron’s life. But why do the thousands of dollars being given to the agencies–who are supposed to be providing Aaron care–don’t care?

There is a huge difference between providing “care” and “caring”.

Comments

Okay, getting old is tough for everyone, share what you are thinking. Do you think it is more intense for a family with a child with a disability? Is it harder as the child grows into an adult?

Keep Climbing: Onward and Upward
All my best,
Mary

Related Articles:

https://climbingeverymountain.com/nursing-and-caring-1945-vs-2010/

https://climbingeverymountain.com/the-circles-of-life/

https://climbingeverymountain.com/inclusion-for-moms-sisters-of-the-heart/ BTW: Lori Foster 2013 register now.

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 Home and Community Based (HCBS) Waiver when there are thousands 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!”

We usually bring Aaron home with us on Sundays. Here is what this inclusive day looked like:

Aaron’s dad picked him up at 9:30 AM from his house. He talked with Kevin, Aaron’s long-time caregiver. Kevin knew when Aaron had had his last BM. Kevin 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 on couches 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 Kevin 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 double-check 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 Kevin 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 the 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

Better than Church

Playing for Change

playing for change songs around the world

“Lean on Me” from Playing for Change.

What I love about this video is musicians from all over the world are playing the same song. Giving the same message. Gritty to sophisticated, washboards to violins–it’s the same song and message.

Kind of like all the people who believe in inclusion are playing the same song and giving the same message.

Kind of like all the people around the world who are working to make the world an inclusive place for ALL people, including people with disabilities.

The Inclusion Network

Check out The Inclusion Network hosted by Jack Pearpoint. There are many friends there from TASH, Arc, and advocacy days gone by who have stood by me and other parents of people with severe disabilities. Just a few are John O’Brien, Connie Lyle O’Brien, Barb McKenzie, John McKnight… and Gail Jacobs.

Standing with One Person–and Many

Our 45-year journey toward Inclusion has been long and hard. And when we look at Aaron’s current life, we don’t seem to have made much progress. We’ve done three MAPS and person-centered plans but they just ended up in Aaron’s chart with a bureaucratic check-mark that they were completed.

We continue to do all the right planning, we take the right risks, we fight like the devil to get good programs, we attend countless meetings, join the right groups, and work with strong visionaries to build a better world for all people with severe disabilities. But it’s not enough.

The journey continues with every breath we have in this life but unless Aaron dies before we do, we need to plan for an extended journey that continues indefinitely after we are gone. We make our choices and face our battles: the big ones, and the little ones… we accept the compromises we have to make to survive. We keep believing. There is no other choice.

We stand on the shoulders of the parents, self-advocates, caregivers, teachers, and advocates who came before us and bought our opportunities with their sweat and blood. We continue their work. We attempt to build an inclusive community that has never existed in the history of the world…and then we will pass on this legacy to the next generation.

When all is said and done, we can hold our heads high and shout to the world, “We stood together for Inclusion.”

Our family stands for Aaron in our community. Across the world others, in their own way, in their own community, with their own child, or friend, are also standing for Inclusion.

And each day, we touch the life of one person–and many. We make things a little better than they would have been without our work for our one person–and many. And that gives us hope and is our life work.

So thank you, dear friends. Thank you, also, to all the people who are reading this who I have never met but who are working for an inclusive world where everyone belongs.

Thank you for standing by me. Thank you for standing by Aaron. Thank you for standing by all of us. God Bless.

Add your voice in the comments:

Who are the people who stand by you?

Keep Climbing: Onward and Upward

All my love and gratitude,

Mary