Climbing Every Mountain

Posts Tagged ‘parents of adults with disabilities’

Dedicated to Marine Sgt. John P. Huling of West Chester, OH who was killed in Afganistan just days before his 26th birthday. His mother, Debbie, works with my husband Tom. He was buried at Arlington National Cemetary Memorial Day Weekend, 2012.

photo credit: Envios

Ever wonder who puts all those flags on the graves of veterans?

MEMORIAL DAY Parades

Memorial Day is a celebration across communities in America which helps us remember our basic values and the soldiers who fought and died for them. Usually, it also includes a parade, one of my favorite parts of the holiday.

Several years ago my family sat in lawn chairs in our local cemetary watching the parade of Little League teams, high school marching bands, veterans in uniforms of many wars, and politicians in their red, white and blue ties.

The cemetery was beautiful. The lawns were like carpet. American flags marked each tombstone. The flowers colored the grounds with reds, pinks, purples and whites. Everyone was feeling damn patriotic.

Everyone except my uncle John. He turned to me and said, “I wasn’t always handicapped.”

I raised my eyebrows and wondered where this came from. Uncle John was never a happy person, but since he had a stroke, he’d become a weary soul. We’d hoped this celebration would lift his spirits.

After all, who doesn’t like a parade?

Uncle John explained. “You know, I was an electrician. I was important, I contributed, I worked in a great hotel for 30 years. Now I just sit here and watch life go by. I’m handicapped and useless.”

Not exactly cheerful parade conversation.

I couldn’t resist. “Uncle John, having a handicap isn’t the end of the world. Can you enjoy the parade? Look at those little kids jumping up and down on their decorated wagons.”

“You just don’t understand,” he said. “I’m not like him.”

And he pointed to my son Aaron, his nephew who has the label of autism.

Some Battles Can’t be Won

I felt I needed to say something, but I couldn’t find any words. So in silence, Uncle John, me and Aaron sat side-by-side, almost touching, yet thousands of miles away from each other.

What Attitudes and Freedoms do we Celebrate?

Some of the veterans in the parade were old with worn faces and bodies. Did our society value them?

Some soldiers were younger than Aaron… and their youth was shattered in the deserts and mountains of strange lands.

Some veterans carried labels of “handicapped and disability.”

And as the crowd cheered and waved, I wondered if these brave men and women would ever be truly accepted into our society.

Would others like uncle John say they were “useless”? Would they only see the handicap?

Would they consider these wounded warriors better than people born disabled, because the soldiers were once whole and then “damaged” fighting for our country?

During the ceremony, a soldier in a wheelchair got some sort of award, and the crowd clapped. I wondered if the community would further support him as he integrated back into society, or was his token wall plaque on Memorial Day the end?

Would people segregate, discriminate and ignore him the rest of the year?

Would he get the support he needed to live, work and become part of the community?

Disabled and Yet-to-be Disabled

I often wonder if everyone understand there are only two groups of people in this world–the disabled, and the yet-to-be-disabled? If we live long enough, each of us will have a disability.

It’s something to think about.

I asked uncle John if he noticed how the cemetery grounds looked. I told him Aaron worked at this cemetery. He and the landscaping crew had disabilities.

And with support, they weren’t handicapped and “useless.”

In fact, they were the ones who made the grounds look so beautiful.

Uncle John died a couple of months later–old, bitter and handicapped. He never understood that people with disabilities could do all sorts of things.

He saw only what they couldn’t do. He focused only of what he couldn’t do.

And he’d missed the joy, pride and purpose of the Memorial Day celebration – just like he missed the joy of Aaron and the joys in his own life.

This Memorial Day, I think Aaron and I will wave a couple of flags in celebration of America… both of us competent, contributing members of our community.

Keep Climbing: Onward and Upward
All my best,

Mary

Comments: Come on, I know you want to share some memory of your own Memorial Day Parade, family reunion, attitudes about disabilities and “Handicapped.” You all have lots of ideas, let us know what you are thinking.

Related Stories:

Perske talks about people with disabilities and WW2.

Aimee Mullins and Survival of the Fittest

What makes you special? A Soldier story

Do the words disability and handicapped mean the same thing?

Roommate Needed in Mason, Ohio

Aaron is a great guy who likes other people. He is looking for a roommate.

Aaron is 38 years old. He attended Lakota Schools and is currently in the Goodwill/Easter Seals Day Program in Lebanon.

Aaron likes to go for walks, ride the exercise bike, swim at the community center, go out to eat, listen to music, look at books, baseball cards and get involved in other inclusive activities in the community. He likes to be around other people.

He loves to go on vacations with his family and ride the trolley bus in Gatlinburg. He likes his Sunday visits with his family and playing with his niece. His family only lives a couple miles away.

Aaron doesn’t talk with many words, but he finds ways of telling everyone what he wants. He repeats phrases and is noisy which could bother some people.

The ranch house is in Mason, near a local park. It is wheelchair accessible. The home is owned and maintained by the Housing Resource Group of Resident Home, so this will be a permanent residence. Aaron has lived in a house managed by this non-profit for over 11 years and we feel they do a great job. We hope he can live here for the rest of his life.

Aaron has a level 5 Medicaid Waiver which will help pay for the 24/7 staff. He needs a roommate who is also on a waiver or private pay. We are working with our Warren County Board of Developmental Disabilities.

Anyone who has lived with other people knows the importance of finding a good roommate match. Aaron would like a new friend as well as someone who could be part of his extended family.

We would love for Aaron’s new roommate to be from the Mason community. We would love if another family would want to share all of our lives, so we could be a support to each other.

Aaron currently has staff who are loving and have known him for many years. They are part of our extended family and have hearts big enough to include another person.

If you know of someone who might be interested, please call me at 513-336-8271.

Comments:

It is difficult to describe Aaron. He is loving and wonderful, but a prospective roommate also needs to know Aaron is noisy and that might be an issue for some people with sensitivity to sounds. So, how can I give Aaron respect and dignity and yet be honest.

Aaron had the same roommate for 13 years. He and Jack are good friends and care about each other. Leaving Jack was one of the hardest parts about moving to a new county. Jack was a gentle man who was older than Aaron. They had their own hobbies and interests, but would go into the community together for shopping, large and small group activities and taking walks with their caregivers. Jack and Aaron had their own way of communicating and respected each other. We can only hope we will find someone like Jack, and as you know, everyone is unique. We ask your prayers.

Any suggestions greatly appreciated.

Keep Climbing: Onward and Upward

All my best,

Mary

Here is a picture of Aaron (on right) his housemate Jack (left) and one of their caregivers (center).

Home Sweet Home

The house is a little ranch in a quiet neighborhood. Aaron and Jack each have their own room which is decorated with their favorite things. We remodeled the back half of the garage into a room where the staff could sleep and maintain an office. Aaron and Jack need a staff person with them at all times. I’ll talk more about the staff in another post.

The guys have a HUD rent subsidy so they only have to pay one third of their income in rent. The house is owned by a non-profit agency that does the maintenance. Thanks to Aaron’s Uncle Steve, we learned about HUD and were the first people in Ohio to access this source of funds. Some day I’ll tell you all the details about the craziness of applying, it involved five people using speed-dial and having to call between 10:00 AM and 10:30 on a specific day to secure the limited vouchers. It was a group effort, and when we got the application we felt like we had won the lottery. It takes parents and other caregivers a lot of effort to keep all the funding balls in the air, but with some creativity it can work.

Aaron and Jack have lived together for over 11 years. Jack has Down syndrome and is in his 50s and Aaron is 35 and has the label of autism. They get along great. They just seem to know what the other person wants or needs. Jack will pick up stuff if Aaron drops it, and Aaron just seems to know when Jack wants to be alone with his videos. It is pretty remarkable that even without verbal language, they just seem to have an understanding, their own system of communication. They don’t go in each other’s rooms–even if the door is open. They know their own chair and place at the kitchen table and they each have a job around the house. Jack loves to choose and pass out different seasonal placemats (this week’s have watermelons). Aaron’s job is to clear the coffee table in the living room and water the plants.

Aaron’s makes choices

Aaron’s favorite things to do are to listen to music, go swimming, go anywhere–he likes cars, buses, trains, planes… if it moves, Aaron likes it. We bring Aaron to our house every weekend so we can be a part of his life, and to give the staff a break.

Neighborhood Welcome

When Aaron and Jack were first moving into the house, there was a huge lawsuit and neighbors across town were claiming that having people with disabilities would lower property values. Fortunately, Aaron and Jack’s neighbors have been wonderful. We planned a picnic last year for all of the people in Aaron’s day program and the family next door not only came to the party, they brought the potato salad and joined in the games. They have helped clear snow and would help in any emergency. We’ve watched the kids next door grow up and feel blessed to have them in our lives.

Update:

In November it will be two years ago since Aaron moved into a new home so he could live closer to my husband and myself. Aaron got a new residential company and new staff.

Jack stayed and got a new roommate though he did come to visit. When the residential company went bankrupt, his loving staff stayed with him for a while, but then moved on. The company that owned the house decided to sell it. So, Jack lost Aaron, his staff, his house and his security. Is it any surprise Jack’s health has suffered.

Next week, Aaron is going to try and visit Jack. There will always be a place for Jack in our hearts. He is a quiet, gentle man. There is no doubt, he and Aaron shared an important part of their lives. There is no doubt they loved each other and looked out for each other–just like a family.

Currently we are looking for a new roommate for Aaron. Jack lives in another county now, so he can’t join us. We meet a new man next week. Will he be someone who will be friends with Aaron. Can this new person be like Jack.

More later.

Keep Climbing: Onward and Upward
Mary

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!

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:

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

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

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