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Archive for June, 2015

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 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 Mother’s Hopes for her Sons

Aaron watching Tommy play Nintendo

Aaron watching Tommy play Nintendo

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.

Our family on a camping trip

Our Family Camping Trip

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)

On the last day of Junior High School.

Dream Plan for Aaron–14 yrs old (Part 2).

America the Beautiful: A Family Vacation Plus

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,

Mary

Comment:

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?