Posts Tagged ‘“Dignity of Risk”’

Drinking Beer and the Dignity of Risk

Above is a picture of Aaron drinking a “cold one.” He’s 35 years old–so he’s well past the drinking age. But is this right?

Beer and Spaghetti

The only time my husband drinks beer is when we have spaghetti for dinner. I don’t know if it is a tradition, a ritual, a family memory, or just some sensory combination he thinks tastes good. He can’t explain it.

The last time we were eating spaghetti, Aaron reached over and picked up Tom’s frosted mug and took a sip. Tom and I both watched his eyes get big with surprise–it was not what he expected.

Now, maybe we are horrible parents that we would let our son, with severe disabilities and the label of autism, drink an alcoholic beverage. After all beer is not recommended on the food pyramid. But over the years, we have tried to allow Aaron to have what the professionals call, “the dignity of risk.”

Dignity of Risk

The concept of “dignity of risk” is we allow our children, and ourselves, to make choices and the accompanying mistakes, failures… because this is how we learn. This is how we build our self-esteem and self-worth. Our Dignity.

Of course, we build a safety net into the situation. For instance, we would never allow Aaron to drink a bottle of cleaner he found under the sink. We would not allow him to get drunk. We would not allow him to take a glass of alcohol from a stranger.

Here is a related story about Aaron and his niece Isabella. (click here) Isabella’s safety was a priority. But with supervision, Uncle Aaron could have the dignity of pushing her in her stroller.

This is a difficult concept for many people to understand. Some people think Tom and I are reckless parents. An equal number think we are “hovering” parents and too protective. But hey, if you are a parent of a child with a severe disability, you know you can’t win. You have to do things as you see them.

Dignity of Risk and School

When Aaron was about 12 years old, one of his daily jobs was to help pack his lunch for school. He couldn’t do the whole job, but we worked with him, and over time, he learned to get a soft drink can and put it in his lunchbox.

This was a great goal because Aaron is always thirsty and loves pop. Getting a pop can and putting it in his lunchbox was a task that was repeated every day, so he got lots of practice. Aaron has physical balance issues and hates to bend over. The physical therapist recommended we put the pop on the middle shelf because it would strengthen some muscle or another….

It took Aaron a long time to master this goal, but he did it. It became part of our daily routine. And a source of pride.

The Dignity of Risk and Unexpected Circumstances

One day about noon I got a phone call from the school principal. He said, “Students are not allowed to bring beer to school.” Then he paused and burst into laughter.

“What?” was all I could say.

The principal then described the lunch scene where Aaron is sitting on the cafeteria benches with about a hundred other junior high school kids.

Aaron opens his lunchbox, and with his peanut butter and jelly sandwich and apple slices he pulls out a Bud Light. (I couldn’t make this up.)

Of course, the crowd went wild. By the time the teachers could figure out what the pandemonium was about, Aaron was a school legend.

Thankfully the principal knew Aaron and he wasn’t suspended.
Apparently, Aaron didn’t put his normal soda in his lunch box.

So then, was this a colossal failure and we stopped allowing Aaron to pack his lunch? No, his daily goal was amended to include sorting and classifying the silver cans before he put one into his lunchbox. Great learning opportunity, not failure.

Spaghetti and Beer

On the night of this picture, Aaron gave the beer back to his dad. We thought that was the end of it, but then he picked up the beer can, put it to his lips and said, “AHHHHH”.

Guess the spaghetti and beer tradition is genetic.

Virtual Beer for the first comment:

What do you think of the “Dignity of Risk”? Do you have any stories to share? Embarrassing Learning Experiences?

Keep Climbing: Onward and Upward
All the best,

Mary

Day 23 of our Chris Brogan’s Every-Day-For-30-Days Blogging Challenge Follow us on Twitter #CB30BC

Alison Golden of The Secret Life of a Warrior Woman is my partner in this challenge: (click here to check out her new post.)

Tale of Two Brothers: Sibs of People with Disabilities

It was the best of times and the worst of times. (Sorry, couldn’t resist.)

All boys and girls grow up into adults. If the statistics are correct that one in 150 children now have the label of autism–that’s a lot of brothers and sisters.

The cute little brothers on the hiking trail grow into … what?

Can the brothers and sisters of people with disabilities, including autism, stay close and involved in their sibling’s life? How does it change over time? Can anyone have a “normal” life?

When we first suspected something was wrong with Aaron we went to the neurologist and began tests. We told him we were thinking of having a second child and he said, “Great, Aaron would love to have a brother or sister.” The tests took 6 months and fortunately for us, we were already pregnant when the neurologist told us Aaron would, “always be in special schools.” (which was his way of saying Aaron had cerebral palsy and was severely retarded–though we didn’t know what he meant.) Tommy is 18 months younger than Aaron who later added autism to his list of neurological labels.

I can’t imagine our lives without Tommy. I think God knew our family needed him to help us get through the rough spots. He is a very thoughtful quiet guy, who is one of the most caring people on the planet. He is also a terrific problem solver and continues to be such a source of joy and support to Aaron and all of us.

In this picture (Aaron 10 yrs) and Tommy (10 yrs) pose on one of the hiking trails in the Great Smoky Mountains. Sometimes our whole family would go on the hikes, sometimes Tommy and his dad, Tom, would go and spend a couple nights on the trail while Aaron and I stayed in the basecamp.

Thankfully Aaron let me use him for an excuse so I wouldn’t have to hike 10 miles up the mountain, sleep on the ground worrying about bears, and shovel the … you know. Sometimes it was just Aaron and me roughing it in the camper with running water and toilets that flushed. Sometimes my dad or sister Janet joined us at basecamp. It was always a great family adventure (click here).

Tommy has always been involved in Aaron’s life. Until he went to college, they went to school together and were involved in some extra curricular activities together. He certainly had his own friends and activities, but Aaron was involved in his life if it was cheering at his baseball games, watching him play video games or build stereo speakers….

In the last several years Tommy’s job, as a radio frequency engineer, has taken him to South Carolina, North Carolina, Pennsylvania, Virginia and D.C. (Did I mention he was in charge of setting up the cell phone operations for Nascar and the Super Bowl?)

He recently moved his family back to Cincinnati and is now living between Aaron’s house and our house so we get to see his family almost every week.

Because Tommy has grown up with Aaron, he knows what Aaron likes and dislikes–sometimes even better than mom.

Tommy invited us all to his house yesterday and his wife Ana fixed an amazing dinner. Isabella (1 year) was climbing on Aaron and making him laugh.

Dignity of Risk

Tommy is now an adult who understands the “dignity of risk” (click here) and lets Aaron share his life with his family. Notice that while Aaron is pushing Isabella in the stroller, Tommy is hiding in the bushes making sure everything is okay.

Aaron can independently push Isabella and talk to her (why she was looking at him). He is using his skills. But Tommy is close by. Isabella enjoys her ride with Uncle Aaron and is safe.

I could not have planned for this special moment. I did not have a lesson plan or task analysis. Tommy just figured it out.

What a great brother.

LIFE IS GOOD!

I want to share two stories about brothers and sisters of people with disabilities that have been in the news.

Sister “Deebah” makes a video about her brother

The first video is by Brooke May, a young girl who has a brother Jonathan, with the label of Down syndrome. Let me know your thoughts in the comments, but I see a loving relationship and a sister who reminds me of Tommy.

Time magazine article by Noah’s Brother

The second story is an article in Time by the author of Boy Alone: A brother’s memoir (Harper). It is written by Karl Taro Greenfeld who’s father wrote the famous book, A Child Called Noah. It is fascinating to follow this family’s journey into the second generation and the adult world. This article points out some of Noah’s history and does not have the miracle ending we all wish. It suggests the way to survive is to live in the present. It also hints at some of the experiences the author experienced in the past and now in his role as advocate and caregiver for his brother. It is a sober message. Again, please share your comments below.

I love the title! “Growing Old with Autism” (click here)

Another Quote:

I remember reading an article where one brother of a person with a severe disability said, “Growing up was like being an only child, with a brother.” When I asked Tommy about this, he was very thoughtful and just nodded.

Comments Welcome

What do you think? Do you have any stories about brothers and sisters?

Keep Climbing–Onward and Upward

All the Best,

Mary

Aaron’s a Dude: The Dignity of Risk

Aaron just spent 3 days on a Dude Ranch in Michigan.

Before the Dude Ranch closes for the winter, buses of adults with all kinds of disability labels arrive and sleep in bunk houses, eat in mess halls, go boating, ride horses and sing songs around the campfire. For many of these adults—this is the highlight of the year.

The ranch’s owner is friends with the owner of the residential company which provides Aaron’s supports. (This is a great example of Bronfenbrenner’s system’s theory—circle of friends, using your contacts…click here).

Aaron is assigned a staff counselor one-on-one, but everyone pitches in to make sure everyone is safe and has a good time. Always being safe and having a good time sometimes contradict each other. Bob Perske used to talk about, “The Dignity of Risk” and as parents this is a complex and difficult balancing act.

This year we were lucky because one of Aaron’s regular staff went to camp. This was nice because she has worked with Aaron for 6 months and knows what Aaron likes and doesn’t like. So that helped mom’s anxiety and I would think made a big difference to Aaron.

This is about Aaron’s fifth dude experience and each time it’s a worry for me and Aaron’s dad. It is hard to get good feedback on what Aaron does and doesn’t do. I wish he could talk and tell us but I figure it is a change of pace, he likes to ride on the bus, sing songs. Especially, he likes to go horseback riding.

When Aaron was growing up, he took horseback lessons for about 10 years. He only stopped because he reached the 150 pound weight limit. When Aaron sits atop a horse, he looks like Prince Charles: head high, back straight, sometimes he even points his toes. I think he and the horses communicate in their own cosmic language. Sue Radabaugh, Bobbi Theis and the physical therapist at Cincinnati Riding for the Handicapped gave Aaron and each rider a lucky horseshoe at the end of each series of lessons.

We learned horseshoes should always be positioned so the luck stays inside the horseshoe and doesn’t fall out. Aaron still has the horseshoes. God knows we don’t want to have our luck fall out.

Each year, I try and give Aaron “the dignity of risk” and not worry about the million of things that can go wrong at camp. I don’t like to think of myself as one of those “over-protective” or “hovering” parents. Some years have gone better than others, but each year we hope and pray our luck holds.

It is just difficult having a person like Aaron who is so vulnerable, when we don’t really know how the staff will act in this very different environment. For instance, Aaron has red hair, freckles, and burns in about 15 minutes in the sun. His caregiver is from Jamaica and has never had a sunburn in her life. I send sunscreen, I give instructions, but each year we ask, “Will Aaron come home with a sunburn?” In the post about deciding to go to the family reunion (click here) I could actually do the ecological assessment and control the environment. But the Dude Ranch is too far away. I had to put the control in the staff’s hands. And we’ve had some rocky experiences with some staff.

We did find out that Aaron went right up to the horses and wanted to ride, he went out on the lake in a boat four times, and he passed out the light bracelets for the barn dance the last night. The little radio we sent for the bus ride worked well, and actually came back with Aaron. Only one toileting accident. So all is well for another year. Hopefully we will see some pictures. And hopefully we will be even better prepared for next year.

Maybe I should hammer some horseshoes (with the luck inside) up on our front door. Whew! made it another year.