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Archive for March, 2013

Aaron Needs a Roommate

Aaron on Exercise Bike

Aaron on exercise bike

Aaron

Aaron with Smoky the Bear

"Who are you?"

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

Home: more than a place

Jack, our caregiver, Aaron

One big happy extended family

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

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:

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.

The “R” Word: A Challenge to Bloggers.

The “R” Word: A Challenge to Bloggers.

Stop the “R” Word

r-word.org

March 6, 2013 is designated “Stop the ‘R’ Word day. If you go to their website they have many ideas for activities and actions. If we each do one thing, we can make a difference for the future of our children. Please share your thoughts and actions in the comments.

David Hinsburger and the “R” word.

David Hinsburger is an award-winning author and advocate for people with disabilities. His article titled: The People who “ARE” the “R” Word is a must read classic for anyone who doesn’t understand what the fuss is all about.

Sticks and Stones and names hurt

My Letter to a Major Blogger

As promised in my post “Definitions of “Retarded”, this is the letter I wrote to a major blogger when he used the words “retarded” and “idiot” in one of his posts. It is edited for this post.

Hi _____,

I have followed your blog ____ for a long time and enjoy your stories, ideas and writing style. However, I have issues with your use of the words: “retarded, idiot, moron and imbecile.”

You have made strong statements about using whatever words you want–even if they offend people and hit their hot buttons.

You can use words like “idiot, moron, imbecile, crip, tard…,” but why?

I agree this is America and defend your right to freedom of speech. I agree people who find these words offensive can just unsubscribe. But… you are a smart and thoughtful person. Why would you want to purposely offend vulnerable people?

I would rather believe you don’t understand how much these words hurt.

Mental Retardation–two words that matter.

My son has the label of “mental retardation” now called an “intellectual disability.” Because of those two words, he was not allowed to go to public school.

Because of those two words we had to spend three years in court, costing thousands of dollars. We, along with other parents, had to prove our children were human and had the right to “life, liberty and the pursuit of happiness.” We had to prove in court that our son would benefit from being around other people and his mere presence on the school grounds would not harm other children. Because of those two words he was not allowed to participate in swimming lessons with the other kids in our neighborhood PUBLIC park. Because of those two words our family has been refused to be served in a restaurant and a Doctor refused to have our son for a patient…need I go on?

But our problems were minor compared to people with the label of intellectual disability in the past.Parallels in Time: A History of People with Disabilities

Just a generation ago, because of those two words, people were treated as animals instead of humans. They were sterilized, given doses of radioactive materials in their oatmeal. They were taken from their families (“for their own good”) and warehoused in inhuman institutions. Some were not given clothes and had to sleep on straw. They were denied even the most basic human rights–all because one psychologist in one situation gave them one test and labeled them those two words.

Most history books have made people with disabilities invisible. So, you probably aren’t aware, but the words: “moron, idiot and imbecile” came straight from the medical manuals of less than 40 years ago.

There are still churches which will not allow people with the label of those two words to marry, some churches do not even allow “those” children to attend their services or receive the sacraments. Many private schools and churches legally still segregate and discriminate against our children with those two words.

There are many normal couples who joyfully want a baby–until they hear those two words, and then immediately abort. There are Baby Doe cases where if the baby has Down syndrome and is assumed to have mental retardation, the family refuses to take the baby home from the hospital and refuses to allow the baby to have food. There are cases of “wrongful birth” where the parents sue the Doctors for allowing their child with “mental retardation” for being born.

In 2012 we can add the case of baby Amelia Riveria who was refused a transplant because she had an intellectual disability. The hospital has recently apologized.

“Mental Retardation, retard, retarded” are not funny words”

In Ohio, the state legislature passed a bill in 2009 to remove the words “Mental Retardation” from state agencies and its documents. This was the work of numerous advocates and thousands of hours of public hearings.

This is a civil rights movement where we are fighting for the right of our children to live, work and recreate in the community. The right to be seen as human beings and citizens of this great country.

Sticks and Stones … and words can hurt.

When a label carries enough stigma that the label alone can cause discrimination–the label is a problem.

The civil rights movement of the 60’s laid the ground work for Sec. 504 of the Rehabilitation Act and the Individuals with Disabilities Education Act…. and our civil rights legislation, The American with Disabilities Act (1990). If you look at the closing statements in Brown vs. Board of Education (1954) you will see the school district’s argument, (paraphrased) “If you let negro children in the public schools, the next thing you know the school will have to educate retarded children and Indians.”

In 2012, our children have the right to go to public schools, and restaurants cannot refuse to serve us, or ask us to leave because they don’t like “the way we look”.

This is NOT ancient history. This is NOT some group of radical parents and advocates who just want people to be politically correct.

Churches, non-public schools and organizations can still discriminate and decide who they allow in their churches but because so many of our children are going to school and living with their families in the communities, there is not the fear that once existed. And the medical professionals have dramatically changed their low expectations and acknowledge the limits of the IQ test and other measures they used to label people.

Sure this came about because of civil rights court cases and federal legislation, but mostly it happened as decent people decided to give people who were different a chance. I know it is unpopular to say that the Federal Government and Laws are important. Many people say there is too much government. I wish there was more protections and enforcement for vulnerable people.

Challenge to Bloggers

My challenge to all bloggers is:

Will you take cheap shots and continue hateful language which hurts people? Or, will you use respectful language and recognize people with intellectual disabilities are people and at least give us all a chance to build a better world.

Words have power. You have power.

Will you use your power to continue to hurt people, or for change?
I know you didn’t mean to hurt anyone, but for those of us (like me) who have children with IQs below 50, children who were labeled “idiots” by our Doctors and medical professionals and who are struggling every day to try and make a better life for our children, the words: “retarded, idiot, moron, imbecile” are downright offensive. So forgive me that I rant today instead of ignoring it.

I know the words are used everywhere and people aren’t particularly trying to hurt people with intellectual disabilities but I would appreciate your consideration.

Thanks. Mary

The blogger I sent this letter to agreed to not use the offensive language only asking that he remain anonymous. I consider that a victory for all of us, and it has made me a loyal fan.

Rosa’s Law

Rosa’s Law was passed and signed by President Obama in 2009 to use People First language in all Federal documents. Love, NOT Labels| Rosa’s Law

I am hoping other bloggers will take up the challenge and use People First language and the words “intellectual disability” in a respectful way.

This is a fresh start. We can do it right this time.

What about you?

Will you take the challenge to remove the “R” word and other hurtful words from your vocabulary?

Will you help educate others who use the words?

Will you learn more about PEOPLE FIRST LANGUAGE?

Talk to me in the comments. Let me know what you are thinking.

Keep Climbing: Onward and Upward.

All the best,

Mary

Related Posts:

“Retarded” Keywords

Remarkable Parents who Never Give Up

Happy Feet, Retarded Teeth and Carnival Goldfish

Retarded| No More

Norm Kunc| What’s Your Credo?

People First Language| Building Community, “Wheelchair Becky” and Smoky Woods