On “Happy Feet,” “Retarded Teeth” and “Carnival Goldfish”
From 1986 (Aaron 12 years, Tommy 10 years)
Carnival Goldfish
Last year at our PTA school carnival, my son Tommy, after numerous tries, threw the ping pong ball in the little glass bowl and won a goldfish. He was thrilled. I was busy working at the Magic Show and was hardly enthusiastic about his new transparent fish in the baggie.
Tommy named the fish “Red and Gold” after the red spot on his back. He wanted to immediately buy a 100-gallon tank, fish food, colored rocks, etc…. We compromised on old glass and the promise that “if it lived” we would get the needed supplies. As we went to bed we talked about how our friend Billy’s carnival goldfish didn’t survive the first night. We talked about how it would be sad if his fish died, but we would flush it down the toilet. We talked about a friend’s dog that had died and how there was a life and death cycle and only the strongest would survive.
At 5:00 AM a jubilant Tommy raced in with “Red and Gold” still swimming in the glass. Being tired (it was 5:00 AM) and a realistic mother I said, “That’s good so far, but don’t get your hopes up.” We fed the fish stale bread for a couple of days because I didn’t want to waste $3.00 on fish food. Every day after school, Tommy would race in to check on his “Red.”
Philosophically I had always felt it was more important to put our energy into helping people. I found it difficult to accept that some pets are treated better than people. I had zero expectations this fish could be healthy. Zero expectations its very existence could be meaningful to Tommy. Zero expectations, except that if it did survive it would be just one more responsibility for me. I really just wanted the fish to die, and get it over with.
Happy Feet
This same week, we had an appointment with the orthopedist for my son Aaron. Aaron has the labels of autism and intellectual disability; some doctors have also said Cerebral Palsy and extremely flat feet.
The orthopedist walked into the examination office with several interns on his heels. Without even acknowledging the fact that Tommy, Aaron, my husband, and I were in the room he spoke into a tape recorder while the interns were taking notes. “Here is a white male, appears to be about 10, with a (something or other jargon…surgery on his ….” He continued for another 3-4 minutes, poking Aaron in different parts of his foot, legs and hips to test this or that reflex.…. He never gave eye contact to Aaron or any of us.
Nervously, Aaron began biting his hand.
At this point, my husband walked over to the Doctor, extended his hand, and said, “Hello, I don’t believe we’ve met.” This took the Doctor off guard and he turned off the tape recorder. In the give-and-take of the next few minutes, we explained our concern for Aaron’s gait and balance. We demonstrated the exercises our physical therapist recommended. Did he say Aaron needed surgery? Did Aaron need a new prescription for his shoe inserts?
Instead of answering our questions the Doctor turned and asked me, “Is he happy?”
“Is Aaron happy?” I repeated, not quite sure what the Doctor was asking. I fumbled out an answer of how we try to make Aaron happy. Then the Doctor said, “It would be very difficult to get Aaron to understand surgery, orthopedic appliances, etc., so let’s not upset the apple cart and do anything to his feet that would make him unhappy.”
Retarded Teeth
My friend Susan, also “severely challenged” went to the dentist. At 13 she still had her baby teeth. Her mother was very concerned because her permanent teeth were crowding her mouth but the baby teeth weren’t falling out. The dentist brushed off the concern. “Why bother, she’s retarded, just let her have two rows of teeth. She’s not going to ever be prom queen.”
We actually know a man with Down syndrome whose parents were told their son would die before he was 6 years old. When he was 10 and his baby teeth still didn’t fall out, the dentist told the parents it was not worth putting the boy through the discomfort of getting his teeth pulled because he wouldn’t live very long. Well, the man is not 56. He still has the two layers of teeth. His baby teeth were never pulled. And now, he has impacted teeth which give him much pain and he has to have all his food cut into tiny pieces or pureed.
No Expectations
I wish these were isolated stories.
When I worked at the Parent Center, every day we would hear of people with disabilities being denied communication devices, tubes in their ears, surgery for tight leg muscles…because there were no expectations, no intrinsic worth or value to their lives.
“Red” is fine, but my face is red.
At Tommy’s persistence, we eventually bought a real fish bowl and real fish food. Even though “Red” is totally dependent on Tommy, I’ve watched Tommy feed him and change his water, proudly introduce “Red” to his friends, and alternate dropping his GI Joe men into the fish bowl to give Red some variety in his life.
An animal that can’t walk, talk, jump or play–“Red” had given much to Tommy. In spite of my initial prejudice and negative attitude, “Red” has become a valued part of our family.
It embarrasses me to think I made “Red” prove his worth before I would meet his basic needs of more space and real food. Nothing was wrong with the fish. I was the one with the problem.
Happy Ending
This year’s Carnival was yesterday. Tommy sang Happy Birthday to “Red,” and guess what? Tommy spent his first ticket winning a playmate for “Red.”
Comments:
Does anyone else want to share an embarrassing story about low expectations, and surprises? Have any of you had similar experiences with anyone in the medical professions? Schools? Community?
Tale of Two Brothers: Sibs of People with Disabilities
Tommy and Aaron hiking in Smokies
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 86 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 considering 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 at the time 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.
Aaron is now 49 and Tommy is now 47, but in this picture (Aaron 10 yrs) and Tommy (8 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 hike and spend a couple of nights on the trail while Aaron and I stayed in the base camp.
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 popup camper. 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 participated in some extracurricular activities together. He certainly had his own friends and activities, but Aaron was involved in his life whether it was cheering at his baseball games, watching him play video games, or building 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.
Aaron pushing Isabella in the stroller
Tommy invited us all to his house yesterday and his wife Ana fixed an amazing dinner. Isabella (1 year old) 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!
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.
Most of us spend our lives trying to squeeze in just one more email, appointment, phone call, or … We dream of the day we can have nothing to do. But is that really what we want?
Twenty-five years ago in 1984, Dr. Lou Brown et al. of the University of Wisconsin-Madison developed The “Life Space Analysis” which has similar exercises to the 168 hours book. Is this a coincidence?
When people ask me, “What’s the purpose of the lives of people with severe disabilities?” (Like why should we let them live and use up our resources?) I have many responses (depending on my mood and who they are…) but sometimes I will answer: “People with autism and severe disabilities can take the complicated out of life. We can see life’s secrets because they help us think about basic truths we don’t usually think about.”
I think this is the beauty of the “Life Space Analysis.” It makes us see what a person with autism’s life actually looks like. It gets to normalization (click here) and core values:
* Is it important to know how each person spends their day?
* Is it important to have a circle of friends and a variety of people in our lives?
* Is it important that people get to go into the community and are not in one room for 24 hours, 365 days a year?
* Does a person with severe intellectual disabilities, autism, and/or other developmental disabilities know the difference?
Life Space Analysis
The Life Space Analysis evaluation tool looks at the 24 hours in the life of a person with autism and/or disabilities:
* What was the person doing every 15-30 minutes?
* Who else was with them?
* Where did this take place?
* Does this schedule stay the same every day and weekend?
For more information on this topic read the transcript of a presentation by Dr. Brown (click here).
Over the years, this has been a useful evaluation tool for my son Aaron who has the label of autism and severe disabilities.
When I wanted to show exactly how my son Aaron’s day consists of mostly sitting on the couch, licking books and repeating “You Okay?”, I’d get a consultant to conduct an ecological assessment using the Life Space Analysis. We’ve had some great consultants over the years: Alison Ford, Patrick Schwartz, and Wade Hitzing, as well as some local folks.
School Environments
When Aaron was school age, the “what, where, who” was pretty normal: a licensed teacher had the responsibility for planning Aaron’s day around a curriculum and his IEP goals. There was a process, accountability, best practice standards, and a qualified team to make things work.
There was the normal rhythm of the school environment: bus rides, classes, and specials like gym, art, and music. There was the lunchroom, students in the halls, lockers, homeroom, weight training, therapy, and vocational job training around the school and in the community…
We had an excellent functional curriculum that looked at Aaron’s domains (click here). There were also after-school activities like basketball games, track, and cross-country…
There were meaningful activities that filled the day, there were people who knew Aaron for a long time and had expectations that he grow and learn, and there were many rooms–spaces in the school, home, and community. When Aaron was in school, he was on no medications.
Lou Brown used to say, “The more rooms, the more people in a person’s life–the more interesting that life will be.”
Adult Environments
Last week when my husband Tom and I were taking the tours of possible adult day programs for Aaron. One of the things we instinctively looked for was the “who, what, and where.” What was the number of rooms? The number of people? and, What was happening in each of these environments? All the components of the Life Space Analysis.
Our “Life Space Analysis”
We went through several places, but here is the last center we visited:
The woman giving our tour had worked with Aaron 10 years ago when he was in transition from High School. She was a trained teacher and job coach. It was a vocational job and Aaron had a great experience. We were thrilled this woman might be back in Aaron’s life. She would know what he was like before he started to lose his skills and regress. Maybe she would be our ticket to getting Aaron a day filled with meaningful activities and people who cared about him?
Spaces-Rooms
The staff in this large center was especially proud of their “sensory room” where four people were watching a large 3-D movie on a big screen.
There were other rooms: a fenced “outdoor area,” an “art room” where they made and sold ceramic ornaments. There was a “cooking room” with kitchen appliances.
There was a large multi-purpose activity room where they had a party the day before.
We were told every day 6 vans took people out into the community in small groups to swimming, the Y, the park, shopping…. That sounded pretty good.
Aaron in this Environment
Tom and I were trying to imagine what this environment would mean for our son Aaron, who is 35 and has the label of autism. What did our Life Space Analysis tell us?
For over an hour, we visited the different rooms in the center, but there were only staff people in all these areas. Which struck us as odd.
All the “clients” (8-10 people with disabilities) were clustered in each of the 4 day “classrooms.” So around 40 or so people were there that day, all in those 4 rooms and the rest of the building was basically empty.
We only went in one of the classes, but we saw adults making halloween pumpkins–just like every pre-school in the country. NOT age-appropriate.
Most people were just sitting at the table doing nothing. One girl was talking in such a high pitch voice, it hurt your ears. This was a concern.
What would Aaron’s day look like?
When we asked what Aaron’s day would look like, we found out only the most capable people, who could be semi-independent, were allowed to go the the art and outdoor areas because they needed little supervision.
People like Aaron would only go to the art room… once in a while. But they couldn’t make any promises.
If Aaron was interested in going swimming at the Y, he might get to do it one time a month. But they couldn’t make any promises.
He would get to go to the sensory room with his group, and they had some music instruments that might be interesting to Aaron, but many of the other people liked the quiet and watching movies on the big movie screen. So again, they couldn’t make any promises.
There were also two empty rooms at the center. They were thinking of developing them when they got the funds for new furniture: “Maybe a place for people to come and eat lunch, maybe a microwave where they could fix their own lunches.” But, no promises.
In summary:
All the advances of the last 50 years, everything we have learned about people with autism and severe disabilities in special education programs, and the research of best practice are not being used.
Aaron, unless some miracle happens, will continue to lose the precious skills we have all worked so hard to create.
The staff does not have the training or resources to be able to replicate the school programs Aaron and the other “clients” experienced. They could go and see these programs in action. Aaron’s High School teacher has repeatedly invited Aaron’s staff to visit and the school is only a couple of miles away.
Tom and I both concluded this particular program was not going to work for Aaron.
We talked about just bringing Aaron home, and me volunteering every day in the center (but they wouldn’t listen to me if I was there). So, what to do?
Dejectedly, we called our care coordinator to schedule another visit to yet another center… and then good news.
The care coordinator talked to the director of another program where Aaron would receive a one-on-one staff person for 3 days a week. A Reprieve. A bit of Hope.
If you are concerned about your child’s, or your own quality of life, look at the activities, people, and rooms in your lives. Maybe the ecological assessment, Life Space Analysis would help.
Speak Your Mind: Please leave your ideas in the comments.
Do you think the Life Space Analysis tool would be useful for people with autism and/or developmental disabilities?
Would it (or the 168 hours book) be useful for your own life?
Can you see the difference between having a life with too much to do, contrasted with a life with days and days of nothing to do?
Can we just sit and watch our children lose skills and deteriorate as adults?
Can we be satisfied with our own lives if we just sit and do nothing?
Keep Climbing: Onward and Upward
All my best,
Mary
Brown, L., Shiraga, B., York, J., Zanella, K. & Rogan, P. (1984). A Life Space Analysis Strategy for Students with Severe Intellectual Disabilities. L.Brown, M. Sweet, B. Shiraga, J. York, K. Zanella, P. Rogan & R. Loomis (Eds). Educational Programs for Students with Severe Handicaps, Vol XIV. Madison: MMSD.
And the difference is…
The Life Space Analysis for Aaron would show there is little for Aaron to do, few people to be with, no expectations that things could be better in his life, and the life of people with severe disabilities who were in this center.
TED is for the “thought leaders” of our generation. I’m so glad Aimee Mullins stood up in front of the world and talked about the words we use, the way we tell stories, our prejudices about people with disabilities, and our ability to change and influence lives.
I’m thrilled she is beautiful, an accomplished athlete, and can deliver a message with the best communicators in the world. Chalk one up for our side. Aimee, you did us proud.
Language
The definitions struck me. Yes, even in 2010 the words “disability” and “handicap” carry such derogatory connotations. Every time I hear the traffic report and they say, “There’s a disabled blocking the west lane” I just cringe.
I recently spent some time looking up the words: “retarded, moron, idiot, and imbecile” and their histories (click here for related articles).
I particularly liked Aimee’s references to Darwin. Our ability to adapt, change, and transform determines the “survival of the fittest”.
Inclusion is our “survival of the fittest.”
This is why I believe in inclusion I agree it means the difference between survival and a decent quality of life. (related article).
Inclusion is about adapting, changing and transforming. It is about blending into the normal population the same way animals learn to camouflage themselves into their environments
My takeaway moment was when the medical doctor said she was an example of the “X” factor.
WE ARE THE X FACTOR.
If you are interested in my take on the differences between the label of “disability” and “handicapped” (click here). I would love to be able to pass this information on to Aimee. Perhaps it might help.
Come Dance With Me: Share your thoughts.
Were there any new ideas? Which of Aimee’s stories did you think were the most powerful? Do you have any stories about Medical or Educational professionals? What message would you want to send to Aimee? To her parents? To the medical professionals? If you had a chance to be a thought leader, what would you talk about?
photo credit: bradleygee
