Archive for July, 2010

Hi Everyone. The response to my blog has been incredible. Each of you are a special part of its success–and you know I save the word “special” for only the best people. Several of you asked for more details in my last post, Happy 20th Birthday ADA. Enjoy!

Oh Beautiful for spacious skies…

From the moment I was pregnant, my husband Tom dreamed of the day he could retrace his childhood trip out west. He glowed in the memories of mom, dad and kids studying the maps on the kitchen table, packing the lunch meat sandwiches in the cooler, and repeating the rest-stop conspiracy of Dad throwing the baseball high over his boys’ heads so they would chase the ball and use up some of that stored energy. The year our son Aaron was ten and his brother Tommy turned nine, faithful to Ulrich family tradition, we headed west. The main difference between my husband’s family, and ours, was that Aaron has autism.

Preparing for the trip

Aaron didn’t start walking until he was five, and even at ten was not completely independent in the bathroom. So how were we going to follow his needed routines for toileting, understand Aaron’s wants without the use of words or signs, watch his balance issues, and especially, cope with unpredictable behaviors? How were we going to manage twenty-one days of camping, sleeping, eating, and interacting with strangers in strange places? How were we going to survive–much less enjoy–visiting eleven National Parks and Monuments, twelve states, Mexico, and traveling five thousand miles?

Certainly, we were not the first family to attempt a western vacation with a child with complex needs, but we also knew we were not going to be “typical” tourists. Tom and I briefly considered leaving Aaron with a friend or in summer camp, but we decided this dream vacation included our “whole family.” We would make it work.

Adaptations and Accommodations

Using our teaching and parenting skills, we designed adaptations and accommodations for the trip. In previous years we camped in state parks and all shared a big tent. Aaron had a terrible time sleeping on the ground in such close quarters and often our sleeping bags got soaked in rain storms, so for this adventure we decided to buy a pop-up camper. Our pediatrician recommended some medication to help Aaron relax and sleep at night. We planned to follow Aaron’s schedule for meals, breaks, and sleep. We would only visit restaurants at non-peak hours, choose corner tables, avoid long waits, and skip most museums. We installed a child-proof lock on the car door and had a suitcase of games, music and snacks. Tommy and Aaron’s jobs on the trip were to crank up the camper each night and help carry the water buckets–jobs that were successful in our previous trips.

Oh Beautiful for pilgrim feet…

Like the pioneers of old, and Tom’s family a generation earlier, at dawn our family set out from Cincinnati with Tommy’s version of a “Colorado or Bust” sign taped to the windshield, driving not oxen-pulling-a-Prairie-Schooner, but a brown-station-wagon-pulling-a-pop-up-camper. We were confident we could handle any of the challenges we knew would come. We would enjoy our family-time and see the beauty of America. And fortunately, instead of mud and rock trails, we had interstate roads and could travel sixty MPH.
We Americans like to brag about being the melting pot and/or salad bowl of the world, a nation that values brotherhood and diversity.

Even with our best preparation, instead of a three-week vacation, this became a three-week teaching excursion. It seems the human America was not quite ready for us.

At home we were surrounded by people who know us; they saw the beauty in Aaron and our family. With the strangers we met on our journey, we had both negative and positive interactions.

Transformational Experiences, day after day

As if we had a disease, one family packed up their tent and moved it to a site on the other side of the campground, and a pregnant woman crossed the street so she wouldn’t have to pass us.

One evening Aaron was enjoying the loud echoes that he could make in the campground bathhouse, and a young boy ran out screaming, “The Hulk, the Hulk’s in there!”

An elderly man said, “We have one of ‘those’ in our family but he doesn’t travel, he lives in a home.”

“Mom, what’s wrong with that boy? Does he act that way on purpose?” The mother whispered, “SHHH, he’s retarded,” and like we were dangerous, yanked the child’s arm and dragged him away.

“Have you tried the Feingold or gluten-free diet?” or, “I know an allergist in Illinois who can get kids like that to talk.” It seems many people think they have the right to offer advice. I am sure they think they are helping, but do they really think we were so desperate we needed a consultation standing in line at the grocery? We struggle with the question: Can Aaron ever be accepted just the way he is, or does he only have value if he is “fixed” or “cured”?

In Arizona, we were asked to leave a family-style restaurant because, as the manager said, “We don’t serve people like him.” Tom and I were shocked because Aaron was happily eating his pancakes. If he had been noisy, we would have understood, but he was acting as normal as anyone. Sobbing, I hurried Aaron to the car wondering what we were going to do a thousand miles from home. I realized this was the lowest point of the trip and saw a glimpse of the discrimination that has followed individuals of other ethnic and racial groups. The stigma of being asked to leave a restaurant because some anonymous person didn’t like the way my son “looked,” and the management’s open prejudice presented an uncomfortable dark side of America I will never forget.

Oh Beautiful for heroes proved…

Our trip would have been devastating if only bad things happened, but we actually had some very positive experiences.

People would ask with smiles, “Where are you from?”, “Where did he get that red hair?” or “How old is he?” Just ordinary questions, but kind gestures and communication starters.

A parent of a child with Down syndrome commented, “I hope the programs in Ohio are better than in Missouri.”

One young girl smiled at us, “We have special kids in our school. My best friend’s name is Brian, he reminds me of him.”

Several children sought out seats next to Aaron and Tommy on a park swing, maybe just for a closer look, but they made eye contact and tried to make Aaron smile. Several gently pushed Aaron on the playground swings, merry-go-round, and gave him a turn kicking the soccer ball.

Aaron pinched me when we were rocking violently on a small plane sight-seeing ride over the Grand Canyon, the pilot said: “Don’t worry, I’ve had grown men reach over and hold my arm.”

At one roadside park all the visitors collectively held their breath as Aaron climbed the steps up a steep slide. Tommy guided him to the top where after much arm-flapping and nervous hand-biting, Aaron finally let go. As the wind struck his face and he barreled down the slide, Aaron’s expression was one of absolute joy. Everyone in the park clapped and cheered. This was not just a glorious moment for Aaron; this was a glorious moment for every person in the park.

In a swimming pool in Arizona, a life guard got in the water during her break and showed Aaron how to swim on his back.

On a train ride in Silverton, CO a little girl moved into the seat next to Aaron and taught him an adapted version of the game Connect Four.

A waiter in Mexico brought Aaron an extra pack of crackers while we waited for our meal and tried to entertain him by singing Old McDonald in broken English. He even helped cut up Aaron’s food. His empathy and understanding crossed national and language barriers.

Universal Design and Inclusion

In the National Parks we found many examples of universal design: accessible water fountains, paved paths, and self-guided tours enabled us to partially participate in the park activities. Several of the campground managers gave us campsites close to the restrooms. At Carlsbad Caverns, New Mexico there were benches and a bypass for the steep climbs. A small work crew with disabilities in Grand Canyon National Park did yard work, and a waitress at Canyon De Chelly used sign language to take an order from a customer. These inclusive accommodations not only made it easier on us, they actually made us feel welcome.

Survival means Adapting to the Environment

We were ambitious. We flew above the Grand Canyon and went down in the caves of New Mexico. We had a lovely lunch at the Broadmore Hotel with water goblets and doilies, but were asked to leave a family style restaurant. We drove to the top of Pike’s Peak and the whole family climbed the ladders of Mesa Verde’s Cliff Palace. We saw Native Americans adapt and survive their desert environment by seeing the value of every living plant and creature. We tasted jelly and saw sewing needles made from a cactus. We heard wolves howling, and we howled back singing every song we knew around the campfire. We took pictures and made memories that will last a lifetime. And perhaps like the Native Americans who live in the desert, we were learning how to adapt to our environment.

Lessons from the road

We were physically and emotionally exhausted. Many amazing things happened that brought our family closer together. At the same time, though, I feel Tom, Tommy, Aaron and I crossed the line.

We could no longer think of ourselves as a family with one member who happened to have a disability; we were truly a “disabled family.”

I am not trying to be shocking or dramatic. We just had to concede that most of the general public did not seem to have the motivation, information or skills to assimilate us into their version of a “typical family.”

We also learned we had no anonymity; we stood out even in the largest group. Five hundred people came to see the bats fly out of Carlsbad Caverns, but because of Aaron’s shout when the bats emerged; four hundred ninety-nine people were looking at us.

We learned that celebrating the diversity of the landscape of America includes seeing the beauty of the diversity of its people.

Planting Appleseeds

Our experiences reinforced our commitment to the inclusion of people with disabilities to live, work, recreate, and go to school with their neighbors, brothers and sisters. We cherished the positive experiences; the children we met gave us so much hope for the next generation of Americans, and travelers. Like Johnny Appleseed on his trips out west, we tried to drop positive seeds that other pioneer families will nurture and see bear fruit. Perhaps a future Kodak moment for our country will include not only the beautiful American landscapes, but people like Aaron and our family.

Better than “The Buck Stops Here”

One last story: In Missouri, inside the Truman Memorial Museum with its high ceilings and big rooms, Aaron started, “vocalizing.” Oh, how it echoed. The guard came up to us and said either Aaron would have to be quiet or leave. Tom started to go, when another tourist came running from across the room. He looked the guard right in the eye and said, “How dare you speak to them like that. That young man is a citizen of this country and has a right to be here. Harry Truman was a strong supporter of the ordinary person. He, of all people would want them to be here.”

As we pulled the car into our driveway, Tom and I were wondering if it was worth it. Would we ever take another road-trip? But like always, our children showed us the way. As he was running into the house to be the first person in the bathroom, Tommy called over his shoulder, “Next year I want to go to Florida!”

And crown thy good with brotherhood, from sea to shining sea!

Add your voice:

Be sure to leave a comment and let me know about your travel adventures. Is it harder when you are away from home and your typical routine?

Keep Climbing: Onward and Upward

All the best,
Mary

photo credit: Squeek

The Americans with Disabilities Act (ADA) was passed July 26, 1990. This is an update from the 20th anniversary post.

First Hand Discrimination is a Shock

Around 1985 our family was on a thousand mile camping trip to visit my sister in Phoenix, AZ. Aaron was about 10 years old, Tommy 8. That morning we packed up our tent and stopped about 10 AM in a Big Boy type restaurant in Flagstaff. We purposely chose a later time to miss the rush. We had eaten at similar restaurants each day of our trip.

We were sitting in a corner booth watching cars go by. Aaron was acting great, just eating his eggs and pancakes.

When the manager came up to the table we just smiled and expected him to ask if everything was okay. Instead, we got the shock of our lives. We were being asked, no told, we had to leave that minute. He would escort us out (after we paid our bill.) Couldn’t even finish our orange juice.

It seems someone complained they didn’t like the way Aaron looked. Not that Aaron was having a tantrum, or throwing things or … just didn’t like the way he looked. When I asked to be able to speak to that person we were told “NO, now get out. We don’t want your kind in our restaurant.” Me, being the great advocate I am, I just burst into tears, grabbed Aaron and ran to our car.

25 years later, I can still feel the pain and stigma of that experience as if I were living it right this minute. It was a transformational experience because it beat the fact in my head that we were not a normal family. Today that would not happen and the difference is ADA.

July 26, 2010 marks the 20th Anniversary of ADA: The Americans with Disabilities Act. The Declaration of Independence may have taken place in 1776 for white male property owners, the civil rights of women and people of color happened in the 1960s, but many people with disabilities, their families and friends think of the 1990 ADA as our civil rights act.

Here are outside facilities in Santos, Brazil. The international symbols saved the day.

Accessibility is for everyone

There has been tremendous progress in the last 20 years to change attitudes, fight discrimination and give people some opportunities in jobs, education, technology, and communications… a whole lot more than just curb cuts and handicapped parking places. But there is so much more to do.

In a later post, I will talk more about accessible websites. I’m trying to find more information on the official “Bobby Approved” (think English Bobby–police officer) which rates websites for being friendly to people with disabilities. There is a little blue police icon in the corner of many websites–well, maybe not many–but at least some.

ADA.Gov Official Website

If you have a couple minutes check out the official website of ADA.
http://www.ada.gov/ Information and Technical Assistance for the Americans with Disabilities Act/a>

Recommended Historic Films

http://www.ada.gov/videogallery.htm#anchor%20ADAsigning990

There are five films: ADA Signing Ceremony, My Country, Ten Employment Myths, Ten Small Business Mistakes, Police Response to Disabilities

Synopsis of ADA Signing Ceremony

This video documents the speech given by President George H. W. Bush when he signed the Americans with Disabilities Act (ADA) into law on July 26, 1990. In the video, President Bush speaks to a huge audience of activists, Congressional supporters, people with disabilities, and their families and friends gathered on the south lawn of the White House.

The 22-minute film, provided to the Department by the George Bush Presidential Library, is being re-released on the Internet to increase awareness of the ADA.

Synopsis of My Country

“My Country”

In this one-hour documentary, symphony conductor James DePreist, who contracted polio as a young man, profiles three people with disabilities whose lives have been shaped by the struggle for equal rights. Mr. DePreist is the nephew of African American contralto Marian Anderson, who in 1939 was prevented from singing at Constitution Hall. He draws parallels between racial barriers and the barriers faced by people with disabilities.

ADA Timeline

Our friends at the MN Governor’s DD Planning Council have this awesome resource on the timeline of ADA. http://www.mnddc.org/news/newsitems/ada_20th_anniversary_timeline.htm

2011 Update

Ohio Legal Rights released this press release about the 21st anniversary of ADA.

We still have much to do and with the budget cutbacks threatening basic services for people with disabilities, this is a time of great stress.

Keep Climbing: Onward and Upward

All my best,

Mary

Comments:

Do you have any stories to share in the comments? I know many people think the government is too large and there are too many laws. What are your experiences with ADA? What do you think is the role that government should play to protect the civil rights of vulnerable people?

Check out the two pictures above. What are the differences?

To celebrate “Back to School,” I thought it would be worth relooking at some educational questions like “What is Inclusion?”

Next, “Why do we go to school?”

The concept of INCLUSION is both simple and complex.

Inclusion is the Opposite of Segregation.

If you never segregate a person, you will never have to make a big deal about including them. They just belong. Period.

Words like segregation, integration and inclusion evolve and change.

When Aaron turned 5 and became eligible for school, we knew it would take a miracle to get him into the front door of a public school.

In the state of Ohio, children with IQs below 50 were excluded from public schools.

There were segregated, “handicapped only” schools in each county. And there were schools for general education students, though many of the schools were still segregated by race.

There was not only the continuum of services for people with disabilities, but there was the social continuum ie. schools were built for general education students, often with separate facilities like classrooms and swimming pools for girls and boys.

History Lessons

Then when new schools were built, these white schools became “negro” schools. When even more new schools were built for the white children (think baby boomers), then the handicapped children were moved into the schools vacanted by the “negroes.”

The Education for All Handicapped Children Act was passed in 1975, and it took Ohio a couple years to get on board.

At the time of Aaron’s hearing, the Dyer handicapped-only school was in a building considered no longer safe for general education children, but Cincinnati Public Schools rented the school to the “retarded” students with the low IQs for $1.00 a year.

Parents and local Board of Mental Retardation officials were happy to have a real school and be able to move out of church basements….

In the early 80s, expectations were raised and the Education of All Handicapped Children said Aaron and Neill Roncker and others had the right to be educated in “the least restrictive environment.”

For Aaron and Neill, this meant being integrated in a public school building. That was our court battle–to be able to ride the bus, walk in the front door, eat lunch with typical kids. We spent years in court with Cincinnati Public, just to be able to walk in the door of the public school buildings.

Then, as more children with disabilities were having success around the country, we learned more about best practice, and parents and advocates were no longer satisfied to have the segregated classroom next to the furnace room.

For information about the history of children with disabilities check out the Minnesota DD Planning council’s excellent resource, Parallels in Time 2

Like many parents and friends of people with disabiliteis, I had a paradigm shift, a new level of awareness about what would be the best educational placement–and it was inclusion, not segregated handicapped-only classes.

Aaron needed to be able to go to school with his brother and neighbors. This was important for Aaron, but also for Tommy and all the children who would grow up to be the next generation of parents, voters, teachers…

Aaron needed to learn functional skills he would need as an adult.

If he couldn’t do the whole skill, then he could at least Partically Participate and learn part of the skill.

Consider SPIN and Spin Agents

Just to make things more interesting, in our culture important words like freedom, family, and educational terms are often sabotaged by politicians, marketers, educators and ordinary people. They can be given a “spin” so that their original meaning is lost. Inclusion is such a word.

Inclusion was not defined in IDEA (Individuals with Disabilities Education Act) but it has been thoroughly examined in research and in the courts i.e. “Inclusion is a right, not a special privilege for a select few.” – Federal Court, Oberti vs Board of Education.

Today, Cincinnati Public school administrators spin the word, they put all special education students in the same school and call it an “Inclusion School.” Other administrators illegally dump kids into general education classrooms with no supports. They might call that inclusion, but it is NOT!

Some people confuse “mainstreaming” “LRE” (Least Restrictive Environment) and the “Continuum of Services.”

But, these also are NOT inclusion because they require the student to earn their way into a general education classroom. The child doesn’t really belong, they are just a visitor in the class at the mercy of the teacher.

Definition of Inclusion

Giangreco (see Resources) has defined the criteria for inclusion:

Students go to the same school as their brothers, sisters, and neighbors;

They participate in the same environments as their peers (lunchroom, bus, playground, classrooms);

According to their IEP, the student has the extra supports they need to be successful (therapy, adapted curriculum materials, an aide, teacher inservice);

There should be a natural proportion of children with/without disabilities, (if 10% of students are on IEPs in a school–no more than 10% of the students in any one class should be on IEPs).

For more information to help a child be included, check out the http://www.iod.unh.edu/” title=”Institute on Disability”>Institute on Disability at the University of New Hampshire.

Inclusion is a civil right

In the landmark Brown v. Board of Education case, segregation was found to be a violation of a student’s civil rights, “separate is inherently unequal.”

I believe the inclusion of people with disabilities is also just that simple, “separate is inherently unequal.”
In our lawsuit against Cincinnati Public Schools (Ulrich v. Jacobs) and in my friend’s lawsuit, (Roncker v. Walters) educational services were deemed “portable.”

Anything that could be provided in a segregated, handicapped only, school or classroom could be provided in a general education class IF the school added the needed aids and services.

What does Inclusion Look like?

Aaron had lots of wonderful inclusive opportunities. He went on a regular bus to the same school as his brother and neighbors, he was on the regular track team, he went to a regular biology class, he went to the prom and participated in the graduation ceremony.

An Inclusive Graduation Ceremony

Almost everything about Tommy and Aaron’s Graduation ceremonies were the same. Lakota High School is one of the largest high schools in the state. The both had HUGE graduating classes, both were held at the University of Cincinnati. Both had cheering parents and friends.

The difference between Aaron’s school experience and his typical brother Tommy’s, is evidenced in their graduation pictures above.

Aaron didn’t have to go through a segregated graduation ceremony and earn the right or prove he was ready to go to the inclusive celebration.

We assumed it was his civil right to be with the rest of the graduating class.

We did prepare by considering what would Aaron need to be added or subtracted from the typical experience.

In his case, Aaron needed an extra support person, his wonderful teacher Mr. Mike Valdini. And, what needed to be subtracted–the damn mortar board hat!

Hope this explains inclusion, if not, contact me and I’ll be happy to help.

Make a comment. What are your experiences with kids with disabilities? The world is changing and we are part of it.

Inclusion after school graduation

The school experience was tricky and took a lot of thought and planning, but after graduation, in the adult world inclusion is even harder.

In future posts, I’ll share some of our successes and challenges.

Keep Climbing: Onward and Upward

All my best,

Mary

Comments:

It now seems like the concept of inclusion has been around forever. But like any civil rights movement, we often don’t move forward in a straight line. What are some of your experiences?

Here is a picture of Aaron (on right) his housemate Jack (left) and one of their caregivers (center).

Home Sweet Home

The house is a little ranch in a quiet neighborhood. Aaron and Jack each have their own room which is decorated with their favorite things. We remodeled the back half of the garage into a room where the staff could sleep and maintain an office. Aaron and Jack need a staff person with them at all times. I’ll talk more about the staff in another post.

The guys have a HUD rent subsidy so they only have to pay one third of their income in rent. The house is owned by a non-profit agency that does the maintenance. Thanks to Aaron’s Uncle Steve, we learned about HUD and were the first people in Ohio to access this source of funds. Some day I’ll tell you all the details about the craziness of applying, it involved five people using speed-dial and having to call between 10:00 AM and 10:30 on a specific day to secure the limited vouchers. It was a group effort, and when we got the application we felt like we had won the lottery. It takes parents and other caregivers a lot of effort to keep all the funding balls in the air, but with some creativity it can work.

Aaron and Jack have lived together for over 11 years. Jack has Down syndrome and is in his 50s and Aaron is 35 and has the label of autism. They get along great. They just seem to know what the other person wants or needs. Jack will pick up stuff if Aaron drops it, and Aaron just seems to know when Jack wants to be alone with his videos. It is pretty remarkable that even without verbal language, they just seem to have an understanding, their own system of communication. They don’t go in each other’s rooms–even if the door is open. They know their own chair and place at the kitchen table and they each have a job around the house. Jack loves to choose and pass out different seasonal placemats (this week’s have watermelons). Aaron’s job is to clear the coffee table in the living room and water the plants.

Aaron’s makes choices

Aaron’s favorite things to do are to listen to music, go swimming, go anywhere–he likes cars, buses, trains, planes… if it moves, Aaron likes it. We bring Aaron to our house every weekend so we can be a part of his life, and to give the staff a break.

Neighborhood Welcome

When Aaron and Jack were first moving into the house, there was a huge lawsuit and neighbors across town were claiming that having people with disabilities would lower property values. Fortunately, Aaron and Jack’s neighbors have been wonderful. We planned a picnic last year for all of the people in Aaron’s day program and the family next door not only came to the party, they brought the potato salad and joined in the games. They have helped clear snow and would help in any emergency. We’ve watched the kids next door grow up and feel blessed to have them in our lives.

photo credit: wallyg

Is Anybody There? Does Anybody Care?

Each of us has transformational moments in our lives.

One of mine was watching the musical 1776. In one scene the night before the vote on independency, John Adams reads a letter from George Washington and using his words, sings about “commitment.”

These founding fathers used words and actions to create a form of government that never existed before. They were visionaries, they were leaders. Seth Godin would say they were Linchpins, they shipped.

Americans with Disabilities Act (ADA) is 20 years old July 26, 2010

Since Aaron was born, in my small way, I have taken a stand for the civil rights of people with severe disabilities.

With ADA they now have a chance at the American Dream of our forefathers. The dream is not a promise, it is still only a dream for most of us, but there is the possibility–the hope.

Dedicated parents and professionals of people with disabilities answered the call: “Is anybody there? Does anybody care? Does anybody see what I see?” Their work and sacrifice have made it possible for Aaron and others to grow up with their parents and families; go to school with their brothers, sisters and neighbors; and learn skills that will help them after they graduate for the 40, 50, 60 years of the rest of their lives.

Thanks to the Americans with Disabilities Act (ADA) they can live in the community of their choice; and with luck have people who will care about them.

Individuals with Disabilities Education Act (IDEA) 1975

In 1975 when we were first learning of Aaron’s intellectual disability, an inclusive life was just the dream of a few parents and professionals. Now, in 2010 we have better attitudes, laws, research and information. We have made tremendous progress, at least for school-age kids. But like other civil rights movements we do not have all the answers, we have not reached the top of the mountain–especially when it comes to the lives of adults with disabilities.

I was interviewed last week by a university student who was taking a class on people with exceptionalities. His assignment was to interview a parent who had lived during the early days of IDEA and compare “inclusion” with the “continuum of services.”

We talked about the Disability Civil Rights Movement, we talked about the definition of inclusion and how some professionals have bastardized the word, we talked about taking a personal stand and making a commitment.

As I prepared for the interview, it felt good to go through my files and pull the documentation of what we have accomplished in the past 30 years.

See (Parallels in Time if you are interested in a history) on the other hand, it was shocking that inclusion is still a controversial issue.

I know old paradigms die hard, but it is more than that.

There are some people who will never give up their segregated and “special” attitudes and values. Some people who will forever fight for keeping the status quo and the charity model. And, it is no secret that No Child Left Behind–left our children behind.

In future blog posts I will talk about this journey, but for now I am just going to say there is a resource page that will have some contact information.

Keep Climbing: Onward and Upward
All my best,

Mary

In the comments: What do you think? Is anybody there? Does anybody care?

photo credit: bjarnit

Climbing Every Mountain: More than a Song

My life journey has been to try and create an inclusive world where everyone belongs, a decent quality of life for my family, and particularly my son Aaron who has the label of autism.

“Aaron” means high mountain

My husband and I have always loved the mountains. In hindsight, maybe instead of naming our first born “Aaron,” which comes from the Hebrew meaning “high mountain,” we should have chosen a different name which meant something like “gentle stream” or “quiet brook.”

Climb Every Mountain

In 1965, I was part of a small group of aspirants who put on our Sunday black veils and were given special permission to go “into the world” to see The Sound of Music in a real movie theater.  When Mother Superior started singing Climb Every Mountain, me–Mary the aspirant– prayed that I too would find,

“a dream that will need all the love you can give, every day of your life for as long as you live.” 

Perhaps another misstep. Seems that God chose to answer that prayer. But then, Helen Keller who knew a thing or two about disabilities, wrote: “Life is either a daring adventure, or nothing at all.”

So climbing every mountain, my life continues to be an incredible daring adventure and though I get discouraged and exhausted, I feel blessed and know I am making a difference.

For Parents and Caregivers of People who have Disabilities and are Elderly

As parents and caregivers of vulnerable people each of us is climbing our own mountain. Each of us is searching for courage and fellow travelers. Often in our real world, our family, friends and even the professional staff who are being paid to help us don’t share our vision. When my parents turned 80 and physically became vulnerable, I was able to use many of the lessons and information I learned with Aaron to help them improve their quality of life. There are many similarities for those who can look past the stigma of “disability.”

Make a Comment, Join our TEAM

I am hoping you will want to join this community of climbers and paradigm pioneers as we prepare emotionally and practically for the journey to the summit.

I am hoping you will consider this site a sort of Base Camp where we gather to dream dreams, trade resources and share the personal stories that make each of us a unique gift to this world.

I am hoping you will add comments and chat with us. I’m hoping you will sign up to “Get New Posts” (top left on homepage) and be notified by email each time a new article is posted.

Climbing the Blogging Mountain

Experience with including my son and other vulnerable people into the community–I have, but I’m trying hard not to panic as I begin this new journey into websites and blogging.

I’m hoping the great stories, useful tips and information will make up for my lack of tech “savyness”. And yea, if we are going to be trying to create a new inclusive world that never existed before, I will make up words from time to time.

Welcome! As life puts new mountains before us, grab onto that life rope and climb with us.