Archive for June, 2012
Do you start out the day asking, “What is my purpose?”
Sometimes that question will motivate me. Sometimes it is whispered in anger or despair; sometimes as a prayer for direction. But I wonder how I would ask about my purpose in life– if I could not speak with my voice. Like most people, I take so much for granted.
How would I feel if no one ever listened or thought I had anything important to say?
Perhaps you have already seen these videos on YouTube, but they are new to me. In the comments I hope you will share what you think, did these videos communicate new ideas, new questions, rock your world, move you to actions?????
Being able to communicate is like winning the lottery.
We usually think about winning money when we think about winning the lottery. But what would be more precious than money?
Andrew is a 13 year old young man who has the label of autism. He is communicating by pointing a pencil to a letter stencil board made by his grandfather. Andrew and his mom have been communicating this way for over 4 years. Notice how they pass the pencil as each takes a turn communicating.
Andrew: Non verbal autism + communication Part 1
Part 1: Script
Mom (M): I thought it would be interesting if you could talk a little bit about the difference that being able to communicate has impacted your life—like if you could not communicate and now that you can communicate.
Andrew (A): Yes. Now that I am using the letter board my life is having more meaning.
Since I was a little boy what I really wanted was to be treated as a normal boy
with pieces of my sensory system out of functioning.
M: Can you talk some more about that?
A: All autistics think
What is my purpose if no one thinks I can learn?
Then my mom found I am learning more… (con’t in part 2)
Part 2: Script
A: …then she thought.
M: This is good keep going. This is really good.
A: You see all autistics have motor issues that limit their ability to communicate.
M: Keep on. You need to move your elbow, pick it up.
A: So once I had a new way to communicate
M: Keep going.
A: I felt like a kind of Lottery Winner in Life.
M: That’s a good way to put it.
A: So now I’m hoping to graduate from high school and lead a fulfilling life.
M: So, if you had any words of wisdom for parents and your teachers, what would you say?
A: See each individual as a respecting individual who deserves to have an education and live in their communities as productive citizens.
The Right to Communicate
The right to communicate is the means by which all other rights are realized and is, in itself, a basic human right. (TASH resolution on the Right to Communicate.)
When I watch these videos, I am struck with how much we can learn from people with autism. The classic definition of autism talks about “difficulties in social interaction, social communication, and stereotypical behaviors.” But as Bob Williams wrote so brilliantly in his poem “What if,” maybe the difficulty in communication is our problem.
There have been many breakthroughs in communication showcased by The Wretches and Jabberers movie and new technology like the IPad and new applications.
Call to Action
My son Aaron used to type when he was in high school. Then, he graduated and his facilitator moved away and he didn’t want to type with me, his mom. But now we’re taking action. We hope to begin Aaron’s augmented communication again this month. It’s time.
We’re going to be getting an IPad and some applications. If you have any advice, let me know.
Share your thoughts:
Some people still think this is all a hoax. Some people think it is a miracle.
What do you think?
What did you think of the videos of Andrew and his mom? Do you think Andrew was really communicating? Do you think Andrew is smart? Was his mom manipulating him? Is there any person you know who might be able to better communicate with some technology?
Do you agree that the right to communicate is the most basic of human rights?
If you couldn’t talk, would you think being able to communicate was like winning the lottery?
Keep Climbing: Onward and Upward
All my best,
Anyone can be a Father, but only someone special can be a Dad. (anon.)
“Love is that condition in which the happiness of another person is essential to your own.” (Heinlein, Stranger in a Strange Land, 1961.)
What is a Father’s “unconditional love”?
Many people have trouble explaining “unconditional love” and “fathers.”
I remember one Hallmark commercial where an older dad said he really only understood a father’s love when he saw his son holding his new baby–his grandchild. We were fortunate to see our son, Tommy with his new daughter. That is one amazing moment and made our hearts burst with love and pride.
But when I think of my husband Tom, and the harder love, the real unconditional love, it is when he is with Aaron, our oldest son who has the label of autism, intellectual and developmental disabilities.
Love is in the details, not the traditional big events like a new grandchild. It is in the demanding-ordinary-daily-love Tom pours into making Aaron’s life “normal” and “special” at the same time. Doing things that have to be done, when you would rather do other things.
Here is today’s example:
Dad picked up Aaron at his house at 8:30 AM today. The caregivers are going to a family reunion, so we want to give them some additional time off. After checking on his meds, asking about his toileting, Dad talked to the caregivers about our recent visit to Aaron’s medical doctor. Tom tells the staff, “Yes, you have to get the prescription filled.” And “Yes, this is now Saturday and we went to the doctor on Monday. What’s the problem?”
Tom then brings Aaron home to our house, takes him to the bathroom, cuts his fingernails, throws in some laundry (I’m still recovering from my surgery) and after an hour takes Aaron to get a haircut, go to the grocery and treat Aaron to a hamburger. Mom gets to stay home and hang out on the computer.
Later today we plan on taking Aaron swimming, and then seeing Tommy and his family to celebrate Father’s Day. We’ll take Aaron back to his house about 8:30 pm.
Dad is hoping to catch some of the US Open Golf Tournament on TV, but he fits that in between Aaron’s care.
Sure, as we celebrate Father’s Day, we’ll give Dad a couple little presents. I’m sure our granddaughter will give him a big hug and card too. But the “Bagel Guillotine” slicer, some peanuts for the ballgame and a new golf shirt will never be enough thanks for all the love and devotion Dad gives to his sons–every day.
Happy Father’s Day Dad! We love you unconditionally too.
Amplify the positive outliers
This week Seth Godin wrote an interesting post about creating change. He suggests that the easiest way is to “Amplify the positive outliers.” In other words, we don’t waste our time “extinguishing bad behaviors” and instead find “positive deviants,” positive examples of what we are trying to do and then “give them a platform, a microphone and public praise.” Seth says by focusing on our success stories and celebrating our superstars we will change our culture and strengthen our tribe.
In our Climbing Every Mountain community and other tribes of “inclusion” and “normalization,” we face daily examples of people promoting and building segregated schools for children with autism, segregated adult day (wasting) programs, even a new segregated “handicap only” baseball field. These are downright depressing and steal our energy and spirit.
So let’s begin thinking of positive examples and naming our “positive deviants.” In fact, most of the advocates and parents I know would like to be called a “positive deviant”—Yep, fits our label system just fine? Maybe we should be pushing the psychologists to adding that to the DSM, might make better reading than saying parents are still stuck in the grief cycle, eh?
Inspirational Video of people who changed the world
Enjoy this one minute of thinking about “The Crazy Ones” who helped change the world. If I was making a video, I would start with the above picture of my husband Tom and Aaron, the kid with all the labels–including “son.”
Some of the other Superstars in our life who would be in my video are: Annie Bauer, Michael Valdini, Dennis Burger, Colleen Wieck, Lou Brown, Anne Donnellan, Ed Roberts, Bob Perske, Tommy and Ana Ulrich, Mary Ann Roncker, Debbie Wetzel, Patty McMahon, Madeline Will, Patty McGill Smith, Patti Hackett, Leanne Bowling, Alison Ford and many others.
Join in the Fun
This post is dedicated to all the Superstar Dads out there who are changing the world.
In the comments, tell us: If you made a video of your “positive deviants” who would be your superstars? Not just dads, but parents, teachers, professionals, self-advocates who you think have changed our world? Who are the people who have moved us from segregation and given us the dream of an inclusive life with our families and terrific dads?
Keep Climbing: Onward and Upward
All my best,
Is summer different for kids with and without disabilities?
As parents of children with disabilities, it is difficult to know “What is realistic?” “What goals do I want?”. I have always found it helpful to measure “normalization” by comparing the life of my son Tommy with his brother Aaron. Below are my thoughts about summer activities when the boys were young teens. The lessons I learned helped me cherish the final “inclusive” story below. Hope you’ll share your thoughts and success stories.
Tommy, my 13 year old son, with the label of “normal”:
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 which included 2 practices a week and a game. In August he began daily training for the school cross-country team.
Was active in a neighborhood network of five boys who decided to start a 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 3 times and his friends 5 times.
Had a season’s pass to a nearby amusement park and 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.
Aaron, age 14, with the label of autism, intellectual and developmental disability:
Aaron went to two weeks of “special” camp: Easter Seals and Stepping Stones.
Aaron’s major activity was watching Tommy play baseball, video games…and riding in the carpool to drop off Tommy and his friends.
Aaron also has a pass to the amusement park, but can only go with an adult (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 from the other 9 months of the year.
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*
He was not invited to overnights with cousins or friends.
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 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 wouldn’t 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/…oh perhaps…some wonderful person will believe that a community is more that a group of houses, businesses and people.
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). If Aaron had an inclusive swim buddy, Aaron wouldn’t have to go to “handicap swim” but rather the general swim with the other kids.
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, Tommy and his friends stopped by our house to make some peanut butter and jelly sandwiches for an impromptu 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 his bike in tandem with his brother.
In about one hour the picnic ended and they brought Aaron back.
That was the highlight of Aaron’s whole summer.
Our Olympic Moment–not, Special Olympic Moment
That moment for Aaron was sort of like the experience of an Olympic ice skater, gymnast, American Idol singer 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 experience of community integration and freedom. They are the next generation of soccer coaches, swim instructors, church and scout learners.
The change of inclusion has begun.
Keep Climbing: Onward and Upward
All my best,
Share YOUR Thoughts:
Are summers different for kids with and without disabilities where you live? Can you think of anything you could do to help? Any way to include a child in the activities of your children? Any tips to share? Any stories from the 90s? 2012?