Archive for the ‘Ulrich Family’ Category
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 bread crumbs. 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 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?
A Good Day!
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!
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,
Summer Activities| A Mother’s Hope for Her Sons with and without disabilities
NOTE: This is when Tommy was 13 and Aaron 14 years old.
Is summer different for kids with and without disabilities?
This summer Tommy, my 13 year old son, …
• Went to 2 weeks of Boy Scout camp, an experience which included a hike on the Appalachian Trail.
• Had to choose between participating in baseball or soccer. In August, however, he began training for the school cross-country team.
• Was active in a neighborhood network of five boys who decided to start a Nintendo Gaming Exchange Club. His friends called him the minute he arrived home from activities, played games until supper.
* Was invited to stay overnight with a friend or cousin.
• Had a season’s pass to a nearby amusement park, and because he can use public transportation independently, spent at least one day there each week with friends.
The days of summer flew by for Tommy. He had individual activities with friends, but also family activities which included a camping vacation and travel to a National Park. His major frustrations were either the lack of time for pursuing all of his interests, or his Mom’s suggesting he do something “dumb” like reading a book or practicing his clarinet.
Tommy’s brother, Aaron, age 14.
Aaron went to two weeks of special camp this summer.
Aaron’s major summer/weekend/vacation activity is watching Tommy play baseball, play Nintendo games…and riding to drop Tommy and his friends off.
Aaron also has a pass to the amusement park, but can only go with an adult (who so far is his mother).
Aaron spends every morning saying, “bus, bus…ready, set, go.” When the school bus doesn’t come, he sometimes licks on the front window, bites his hands and puts on his coat and backpack. He can’t figure out why his routine is different.
Aaron also can’t figure out why we spend all winter telling him to keep the front door shut, and all summer telling him to keep the front door open (but that’s another story.) *smile*
Aaron was on the waiting list for a short Easter Seals sponsored program in August, the only other community recreation opportunity available to him in our county.
What’s the Difference?
As I contrast the lives of my two boys, I can’t help thinking…
• …perhaps I wouldn’t feel Aaron’s isolation and lack of contact with any friends or same-age peers if Tommy had fewer friends.
• …perhaps I wouldn’t worry about Aaron’s behaviors, physical condition, weight and stamina if he were occasionally an active participant, rather than always an observer.
• …perhaps the hours and hours of inaction would not occur if Aaron had better skills or could entertain himself.
• …perhaps our family will adjust eventually to the sadness (and stress) we feel knowing Aaron’s only opportunities come from mom, dad or brother…and realizing it may always be that way.
* …perhaps we would feel so trapped if we could get respite regularly.
* …perhaps we’ll become accustomed to wearing a key around our necks so that the door can be locked with a deadbolt every time someone goes out or comes in (otherwise Aaron will run into the street or enter neighbors’ homes).
* …perhaps we’ll resign ourselves to our community’s “special” camps and “special” recreation programs, which effectively exclude Aaron from almost everything that is typical, regular, easily available and low cost. Perhaps hope will sustain us that someday a “community support” agency professional from somewhere, anywhere, could adapt, modify and begin to open community activities for Aaron and others.
* …perhaps our prayer will be answered that some child around Aaron’s age will care enough to help him join a circle of friends. Just once, even once.
* …perhaps/…oh perhaps…some wonderful person will believe that a community is more that a group of houses, businesses and people. Agency professionals must become bridge builders in the community. Families in which a child has a disability need the same support regular families have.
Summary: Separate is inherently Unequal.
The tragedy of having a child with a disability has nothing to do with a syndrome, impairment or disease. Words such as autism, CP, and intellectual disabilities are just descriptors the same way hair color, height, race, sex and personality are descriptors. Children don’t start out life knowing they are different. The tragedy is the reaction of families, neighbors and society, which emphasize differences.
The conflict for people with disabilities and for their families comes when the community limits opportunities, segregates and restricts individuals’ choices (e.g. Handicap swim is Tuesday; 1:30-2:30 p.m. and General swim is Monday to Friday 8:00–5:00).
It doesn’t matter that the limiting of opportunities appears, to have a good rationale or charitable intentions. Segregation limits freedom, limits choices, and limits development. “Special” means segregated.
Our Olympic Moment of Inclusion
One hot July day last summer, Tommy and his friends stopped by our house to make some peanut butter and jelly sandwiches for a picnic.
Unexpectedly, one of the boys asked if Aaron wanted to come along.
Five minutes later, all the kids were laughing, talking and riding their bikes to the park. One red-haired kid named Aaron was riding on a bike in tandem.
In about one-half hour the picnic ended and they brought Aaron back; that was the highlight of Aaron’s whole summer.
That moment for Aaron was sort of like the experience of a serious ice skater. Olympic gymnast, actor, or musician who practices day after day hoping to “bring it all together” for one magic performance or “big break” It was a “victory” –a spontaneous, normalized recreation experience, without his mom! Ahhh (smile-sigh). And now…back to work. But, perhaps, just perhaps…those wonderful, typical neighborhood kids will grow up more fully with the vision for and the experi3nce of community integration and freedom. They are the next generation of soccer coaches, swim instructors, church/synagogue group and scout learners.
The change of inclusion has begun.
Related Stories: (Click on title)
Keep Climbing: Onward and Upward
“When we stop to lift one another up on the climb, we all reach a higher place.”
All my best,
What were your summer vacations like? Would they have been different if you had a label of autism or disability? If you were a parent of a child with a disability what would you be thinking? dreaming? Are summers different for kids with and without disabilities? Can you think of anything you could do to help?
Ever wonder who puts all those flags on the graves of veterans?
Like communities all across America, on Memorial Day our city holds a celebration to remember our basic values. A parade starts at the high school and ends at the cemetery where generations of citizens and soldiers end their life’s journey.
As the sun was beating down to the Sousa marches, our whole family, including my uncle John, was standing by the largest fountain, watching the parade of Little League teams, high school marching bands, Boy Scouts and the politicians in their red, white and blue ties.
The cemetery was beautifully prepared. The lawns were like carpet, the grass on the edge of the sidewalk was so carefully clipped, it stood at attention; the peonies, irises and annuals colored the grounds with reds, pinks, purples and whites. Everyone was feeling damn patriotic.
Everyone, except Uncle John. He turned to me and said, “I wasn’t always handicapped.”
“What?” I know I raised my eyebrows and wondered where this was coming from. I mean, Uncle John was never a happy person, but since he had a stroke, he was a weary soul. We 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 but 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,” eye-pointing to Aaron.
Some Battles Can’t be Won
Since Aaron, my son with the label of autism, was sitting in the lawn chair next to Uncle John, I felt I needed to say something.
But I couldn’t find any words.
In silence, we were side-by-side, almost touching–yet thousands of miles away from each other–as we watched the veterans from the VFW pass by in antique cars.
The soldiers varied in shapes and sizes, men and women, veterans from the current Iraq, Afghanistan war to seniors of the war that would end all wars—but didn’t.
The sun reflected off the windshields, and I reflected that our society treasures the antique cars which are worth more now than when new. The old model cars were spit shined and decorated with banners. The old soldiers also wore banners, but many of their faces and bodies were worn. Did our society value them?
Some soldiers were younger than my sons, Aaron and Tommy. But, we all know their youth was shattered in the deserts and mountains of strange lands.
Some of the veterans in the parade carried the labels of “handicapped and disability.”
As the crowd cheered and waved, I had to wonder if these brave men and women would be truly accepted into our society. Would others, like Uncle John, say they were “useless”?
Would they only see the handicapping condition, would they consider these wounded warriors better than Aaron, because they were once whole? Because they were “damaged” fighting for our country?
World War II Story
As the speeches droned on, I remembered a couple stories by Bob Perske. One where he talked about people with disabilities and the war (click here).
And another: Bob said after WWII, a family in London moved into a new neighborhood. Instead of saying their son had cerebral palsy and had the label of intellectual disability from birth, they told their neighbors, “He was gassed in the trenches of Germany.” And in a post-war era of grief and loss, that benign lie made all the difference. Instead of avoiding or shunning the family, the new neighbors welcomed their family into the community. Their attitudes were completely different.
Modern Day Attitudes
A soldier who used a wheelchair got some sort of award and the crowd clapped. I wondered if our community embraced his family, or did we just give him a token wall plaque on Memorial Day and then segregate, discriminate and ignore him the rest of the year. Would he get the support he needed to live, work and recreate in the community?
The same questions I often ask for Aaron. Is one human more valuable than another? Is that what our country stands for? What the soldiers sacrificed for?
Disabled and Yet-to-be Disabled
Didn’t 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.
Being Useful, Proving Worth.
People with disabilities are not useless and just watching the parade of life go by.
And then being a good advocate—or crazy person who doesn’t know boundaries or when to quit– I asked Uncle John if he noticed how beautiful the cemetery grounds looked.
I told him Aaron worked at this cemetery. He and the crew of people who did the landscaping had disabilities, but if they had the support they needed, they weren’t handicapped and “useless.” In fact, they were the ones who made the grounds look so beautiful.
I pointed to the rows of tombstones which each held a single flag.
I told him that for the last 2 days, Aaron’s job was to place a flag in the holders by each tombstone. And tomorrow, Aaron would go back and remove the flags and save them for 4th of July, when he would again put them out.
Was Aaron useless?
What I remember| Memorial Day:
It’s been ten years since that Memorial Day parade. Uncle John died a couple months later–old, bitter and handicapped. He never hugged Aaron or saw what Aaron could do, only what he couldn’t do.
And, like the day of the parade when he missed the joy, pride and purpose of the Memorial Day celebration, Uncle John also missed the joy Aaron brought to anyone who opened their heart.
I think Aaron and I will wave a couple flags tomorrow to celebrate America.
And, I’m hoping that while Aaron was placing those flags in the cemetery, other people were seeing him as a competent, contributing member of our community.
Keep Climbing: Onward and Upward
All my best,
Come on, I know you want to share some memory of your own Memorial Day Parade, family reunion, attitudes about disabilities and “Handicapped.” Lots of good ideas, let us know what you are thinking.
Aimee Mullins and Survival of the Fittest