by Mary E. Ulrich | Apr 5, 2013
photo credit: Okinawa Soba
Bulletin Board
Today and Everyday is “Stop the ‘R’ word” Day.
Parents, Advocates and Schools around the country are joining in.
Many people are always complaining that the world is too complex –there is nothing they can do.
Stop the “R” word Challenge
YOU can make a difference by choosing respectful language in your own conversations. Doable, Yea!
If you have a story, please share it in the comments.
Here are the articles I have posted on this topic as well as some information on Rosa’s Law which was passed last year to take the words “retarded” out of all public documents. This is more than just being politically correct, it is a step toward seeing people with intellectual disabilities as being “human.”
Love-not labels| Rosa’s Law
Retarded No More
The “R” word| A Challenge to Bloggers
Definitions of the word “Retarded”
Building Community| Using People First Language
Wolf Wolfensberger
Father of Normalization and Citizen Advocacy
Wolf
Wolfensberger
On February 27, 2011 Wolf Wolfensberger died.
Since 1973, Dr. Wolfensberger had been a professor in the School of Education at Syracuse University. His enormous contributions to the disability community will be felt for generations to come.
Dr. Wolfensberger was the originator of Social Role Valorization, the Normalization Principle as well as Citizen Advocacy: major concepts that strongly influenced disability policy and practice in the US and Canada.
He was widely recognized as a major contributor to the field of intellectual and developmental disabilities in the 20th century had a reputation for being a stirring and controversial speaker.
He was the author and co-author of more than 40 books and monographs, and more than 250 chapters and articles. His writing has been translated into 11 languages.
His best known books were: Changing Patterns in Residential Services for the Mentally Retarded, The Principle of Normalization, PASS, and PASSING (Evaluation tools for programs to meet the principles of Normalization).
by Mary E. Ulrich | Mar 28, 2013
Aaron on exercise bike
Aaron
"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
by Mary E. Ulrich | Mar 22, 2013
One big happy extended family
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
by Mary E. Ulrich | Feb 19, 2013
“Forgetting Spells” Inclusion and Happy Endings
Looking for the Village WiseWoman
When I get depressed, I like to pull out a Nora Robert’s book. Don’t laugh:)
For a couple hours, I let the queen of romance weave a tale about another world where, no matter how impossible the conflict, the heroes and heroines will overcome all odds and there will be a happy ending. If only real life was like that. Sigh.
In Nora’s book, “Once Upon A Rose” the village WiseWoman conjures up a “forgetting spell” which protects a baby girl by making her invisible except to those who will wish her “good will”.
Of course any time magic is used, there needs to be a sacrifice to restore balance to the universe–so in this story the mother dies so the baby can live. Of Course.
In my last post, I talked about Balancing my child’s needs and mine. (Click here)so I’ve been thinking about balance, sacrifice and love.
I’m hoping a WiseWoman will come along and cast a “forgetting spell” on me. I’m saying this because I think “forgetting” is the key to solving so many of our problems. What if we could cast a “forgetting spell” so that Aaron would only be seen by those who wish him well? He would be surrounded by people who care about him.
I always felt “Inclusion” and blending into the normal life of a neighborhood is Aaron’s greatest safety–just as animals are protected by camouflaging themselves into their environment.
Aaron likes books, just like Mom
Success Story 1
Last week early one morning, the van driver from Aaron’s day program and his residential caregiver were having words in the driveway of Aaron’s house. GEESH! After all the community building I try to do with the neighbors GEESH ALMIGHTY–the normal adults (the paid professionals who are caregivers) are practically coming to blows in the driveway. And who do they call to fix it? NOT the two different agencies who are making thousands of dollars on Aaron, no of course not–they call me.
So, I handled it! YEA ME! It took several phone calls and a couple hours work, but starting next week a new van service will be providing transportation. Hopefully it is a win-win situation. Most of all, Aaron won’t have to have an emotional stressful start to his day. And any neighbors who might have noticed the commotion will forget about it and Aaron will go back to being invisible. He will just be a normal guy being picked up. No one will notice or be concerned. If there is ever a situation where Aaron is in trouble, I’m hoping the “forgetting spell” will bring out those who wish Aaron “good will” and they will speak up and protect him.
Success Story 2
Because I was unhappy with some of the things in Aaron’s life and took action, the agency which supports Aaron in his day and residential program have been very upset with me. I was the Wicked Witch, the Mother from Hell, the woman who just kept making trouble, anything but the “WiseWoman.”
Well, about 8:30 this morning, I get a call from the supervisor who previously would hardly even talk to me. He called and said our loving staff person who has been with us for over 8 years had a family emergency. Could I possibly go to Aaron’s house?
In twenty minutes I relieved the staff person and held down the fort until the supervisor could get there. In that time, I took both the guys to the bathroom, plunged the stopped-up toilet, and threw a load of clothes into the dryer. I got the guy’s back-packs and lunch boxes ready and when the supervisor arrived was able to give him directions to Aaron’s program and help them into his car.
I felt really good I could help our staff person, Aaron, his housemate and the company. I also felt good that they called me. It was the “community” the “team” the “extended family” I was always talking about.
What struck me was how the attitude of the supervisor had changed. Of course I can’t speak for him, but I think this was a transformational moment in the way he looked at my role as a mother and as part of the larger ecological support system (see related post).
At one point I almost thought he was going to give me a hug. This was incredible because only a couple days ago, I would have put money on the fact he was purposely trying to “punish” me for challenging his agency and his authority, adding roadblocks to our already difficult and complicated life.
Happy Endings
I wish I could craft a romance writer’s tool and create a nice story arc which would tie up this story in a nice circle. There was an opening conflict, it was resolved, and both parties were changed. But “happy ever afters” are just in fairy tales and romance novels.
And unfortunately Aaron’s story will have another opening conflict tomorrow and tomorrow and tomorrow.
And that is just normal life. It is true of every person’s life, not just people with disabilities and their families. The morning after… always opens a new chapter.
So just having a happy ending for one day is okay.
Our staff person’s family crisis worked out okay. She called and thanked me for being someone she could count on. Which is perfect, we need each other. But the big change is that I don’t think the supervisor will ever again see me as the “Wicked Witch” or “Mother from Hell”.
I’m sure we will have more disagreements. He is the representative of a company which has few resources and lots of responsibility and I am the mother of a 35 year old person with autism and severe disabilities who needs lots of resources and lots of responsible people to care for him.
But today we didn’t need bigger-than-life heroes and heroines who did heroic deeds, we just needed WiseWomen and WiseMen.
And maybe today, I’ve had my own transformational experience. Maybe when I am looking for the village WiseWoman to create magic, I’ve learned that WiseWoman must be me.
Today felt like it had a “satisfying ending” even Nora Roberts would approve. And maybe more days with just plain old “satisfying endings” will lead to that elusive “happy-ever-after” for Aaron and all people with disabilities.
Are you becoming a WiseWoman or WiseMan?
Tell us your story or experience with forgetting, and happy endings.
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Climbing a Mountain is a Team Effort, each person is important.
All the best,
Mary
Roberts, N. (2001) Once upon a rose: anthology. New York: Penguin Putnam.
