Dedicated to Marine Sgt. John P. Huling of West Chester who yesterday was buried in Arlington one week short of his 26th birthday. His mother, Debbie, works with my husband Tom. May, 2012

photo credit: Envios

Ever wonder who puts all those flags on the graves of veterans?

MEMORIAL DAY

Like communities all across America, on Memorial Day our city holds a celebration to remember our basic values. A parade starts at the high school and ends at the cemetery where generations of citizens and soldiers end their life’s journey.

Several years ago, as the sun was beating down to the Sousa marches, our whole family, including my uncle John, sat in our lawn chairs watching the parade of Little League teams, high school marching bands, dance schools, Boy Scouts and politicians in their red, white and blue ties.

The cemetery was beautifully prepared. The lawns were like carpet, the grass on the edge of the sidewalk was so carefully clipped, it stood at attention; the peonies, irises and annuals colored the grounds with reds, pinks, purples and whites. Everyone was feeling damn patriotic.

Everyone, except uncle John. He turned to me and said, “I wasn’t always handicapped.”

“What?” I know I raised my eyebrows and wondered where this was coming from. I mean, uncle John was never a happy person, but since he had a stroke, he was a weary soul. We hoped this celebration would lift his spirits. After all, who doesn’t like a parade?

Uncle John explained, “You know, I was an electrician. I was important, I contributed, I worked in a great hotel for 30 years. Now I just sit here and watch life go by. I’m handicapped and useless.”

Not exactly cheerful parade conversation but I couldn’t resist. “Uncle John, having a handicap isn’t the end of the world. Can you enjoy the parade? Look at those little kids jumping up and down on their decorated wagons.”

“You just don’t understand,” he said. “I’m not like him,” eye-pointing to Aaron, his nephew.

Some Battles Can’t be Won

Since Aaron, my son with the label of autism, was sitting in the lawn chair next to uncle John, I felt I needed to say something.

But I couldn’t find any words.

In silence, we were side-by-side, almost touching–yet thousands of miles away from each other–as we watched the veterans from the VFW pass by in antique cars.

The soldiers varied in shapes and sizes, men and women, veterans from the current Iraq, Afghanistan war to seniors of the war that would end all wars—but didn’t.

The sun reflected off the windshields, and I reflected that our society treasures the antique cars which are worth more now than when new. The old model cars were spit shined and decorated with banners. The old soldiers also wore banners, but many of their faces and bodies were worn. Did our society value them?

Some soldiers were younger than my sons, Aaron and Tommy. But, we all know their youth was shattered in the deserts and mountains of strange lands.

Some of the veterans in the parade carried the labels of “handicapped and disability.”

As the crowd cheered and waved, I had to wonder if these brave men and women would be truly accepted into our society.

Would others, like uncle John, say they were “useless”?

Would they only see the handicapping condition, would they consider these wounded warriors better than Aaron, because they were once whole? Because they were “damaged” fighting for our country?

World War II Story

As the speeches droned on, I remembered a couple stories by Bob Perske. One where he talked about people with disabilities and the war (click here).

And another: Bob said after WWII, a family in London moved into a new neighborhood. Instead of saying their son had cerebral palsy and had the label of intellectual disability from birth, they told their neighbors, “He was gassed in the trenches of Germany.” And in a post-war era of grief and loss, that benign lie made all the difference. Instead of avoiding or shunning the family, the new neighbors welcomed their family into the community. Their attitudes were completely different.

Modern Day Attitudes

During the ceremony, a soldier who used a wheelchair got some sort of award and the crowd clapped. I wondered if our community embraced his family, or did we just give him a token wall plaque on Memorial Day and then segregate, discriminate and ignore him the rest of the year.

Would he get the support he needed to live, work and recreate in the community?

The same questions I often ask for Aaron.

Is one human more valuable than another? Is that what our country stands for? What the soldiers sacrificed for?

Disabled and Yet-to-be Disabled

I often wonder if everyone understand there are only two groups of people in this world–the disabled, and the yet-to-be-disabled?

If we live long enough, each of us will have a disability.

Being Useful, Proving Worth.

People with disabilities are not useless and just watching the parade of life go by.

And then being a good advocate—or crazy person who doesn’t know boundaries or when to quit– I asked uncle John if he noticed how beautiful the cemetery grounds looked.

I told him Aaron worked at this cemetery. He and the crew of people who did the landscaping had disabilities, but if they had the support they needed, they weren’t handicapped and “useless.” In fact, they were the ones who made the grounds look so beautiful.

I pointed to the rows of tombstones which each held a single flag.

I told him that for the last 2 days, Aaron’s job was to place a flag in the holders by each tombstone. And tomorrow, Aaron would go back and remove the flags and save them for 4th of July, when he would again put them out.

Is Aaron useless?

What I remember| Memorial Day:

Uncle John died a couple months later–old, bitter and handicapped. He never hugged Aaron or saw what Aaron could do, only what he couldn’t do.

And, like the day of the parade when he missed the joy, pride and purpose of the Memorial Day celebration, uncle John also missed the joy Aaron brought to anyone who opened their heart.

I think Aaron and I will wave a couple flags tomorrow to celebrate America.

And, I’m hoping that while Aaron was placing those flags in the cemetery, other people were seeing him as a competent, contributing member of our community.

Keep Climbing: Onward and Upward
All my best,

Mary

Comments:

Come on, I know you want to share some memory of your own Memorial Day Parade, family reunion, attitudes about disabilities and “Handicapped.” Lots of good ideas, let us know what you are thinking.

Related Stories:
Aimee Mullins and Survival of the Fittest

What makes you special? A Soldier story

Do the words disability and handicapped mean the same thing?

This is Video Week.

So far we’ve seen:

The Values of Inclusion: From Down Under
By Heather Simmons at the Institute of Inclusion in Sydney Australia.

More than just a Graduation Speech
By Jeremy Sicle-Kira, a young man with the label of autism who uses an augmented communication system.

Today’s Feature for all you country music fans is from the Ohio Chapter of People First and was shown during the Rehabilitation Services Commission (RSC) Conference in 2012.

I loved this video, the message, the music, the participation, the fact that the People First group made the video and presented it to the “professionals”–I mean, who is teaching who?

Thoughts on Jobs and the Role of Government

Every day I watch my son, Aaron who has the label of autism, as he sits and loses skills he had in high school. We still have the dream plan, we still have the hope, but we need help to make it happen.

Why is that?

I know it is very popular to bash the government. “Not a government plan”, right? But is that what we really want?

The model programs, grants, initiatives for work, and job coaches of ten years ago are gone-zap.

New RSC priorities and guidelines, cutbacks and more cutbacks on funds have dried up and forced us back to depending on the charity, kindness and pity of others.

It’s NOT a matter of not knowing what to do

We know how to support people in the workplace. It is difficult surely, but we know how to get people jobs.

Special Education and Rehabilitation Services has decades of research and model projects. Marc Gold, Lou Brown and hundreds of skilled teachers and professionals have shown us the direction and specific skills we need to get jobs.

Unfortunately, because there is no mandate for adult services (like public laws which require children to go to school), there are also no requirements for adult day programs. No certification for the people in charge (GED prefered instead of licensed teachers), no functional or community based curriculum, no related services like speech, physical or occupational therapists. Adults are on their own. And there is no due process rights for parents/guardians to hold people accountable. We are told to find another program if we are unhappy.

So, what are our alternatives?

We have to keep believing. Keep telling others about the vision of a job, or if not paid, then meaningful work/volunteer experiences.

Our young people have to remind us not to give up. They have to keep in our face singing, shouting and even misbehaving.

Certainly we need the government. And we need those government plans to be more than just pieces of paper–we need them to support each individual so they can at least partially participate in having a job.

Comments: Any thoughts on “I need a job?” Any other videos you want to recommend to our community?

Keep Climbing: Onward and Upward

All my best, Mary

Related Posts

Functional Curriculum| Use it or Lose it

Busy vs. Bored Life

Remember this video:

Better than Church I still love this one, don’t you want to just sing along?

Graduation: More than just Words.

Did anyone like Jeremy go to your school?

What message would you tell Jeremy if you had the chance?

Jeremy Sicile-Kira’s Graduation Speech

Jeremy graduated from Torrey Pines High School with a 3.70 GPA on June 18, 2010. Jeremy has the label of autism with little verbal speech and gave this commencement address using voice output technology. His father, Jim Sicile, shot and edited this short movie.

Comments: Any other graduation stories you want to share? Don’t you wonder what is happening now two years later? I hope Jeremy is having a wonderful life with all the supports he needs. Is graduation really the beginning?

Keep Climbing: Onward and Upward

Mary

Other posts you might enjoy:

Remarkable Parents and Advocates who didn’t give up.

What is Inclusion?

The Values of Inclusion: Valuable across the World

Jack Pearpoint is a true visionary. He shares his vision with others. I recommend subscribing to his Inclusion Network YouTube Videos (link below the video).

At the Down-Under Inclusion Institute, Jack showcases Heather Simmons from his recent trip to Sydney, Australia in May, 2012. “Heather summarized the simplicity and complexity of living an inclusive life in a welcoming society.” Enjoy. Isn’t it nice to know the ideas of inclusion are spreading around the world.

There is a content organizer below if you want to print it out and take notes.

Find more videos like this on Inclusion Network

Study Guide or Content Organizer: Print out and take notes while watching video.

The Values of Inclusion by Heather Simmons

Everyone is born “in”

All means “All”

Everyone needs to be “in”

Everyone needs to be

Everyone is ready

Everyone needs support

Everyone can learn

Everyone can contribute

Everyone can communicate

Together we are better

Additional Notes:

Any questions? Comment? Anything you would like to share about this video or others?

Keep Climbing: Onward and Upward
All my Best,

Mary

People First Controversy

Background:

There is controversy in the disability community about the use of People First or Person First language.

I’ve written several posts about People First language:

*Rosa’s Law,

*Stigma and segregation caused by labels like “mental retardation“ and,

*Challenge to bloggers to use People First language.

Some self-advocates on the Autism Spectrum disagree They feel parents want to deny “autistics” and “aspies” their unique voices. They say parents only want to destroy autism and cure their children.

I am proud to support Rosa’s Law and advocate for People First Language. Perhaps these personal stories will explain.

I’m going to start and end with “Wheelchair Becky” but also share some stories about the past history of people with disabilities, my son Aaron, myself, and my hope for the future.

Is People First Language important for “Wheelchair Becky”?

In a previous post: Building Community | Wheelchair Becky vs. Flat Stanley, I wrote about the way the Mattel Company thought “Wheelchair Becky” and “Black Barbie” would teach children about diversity and tolerance…and how it backfired.

I think People First language is part of the solution. If you disagree, that’s okay. It’s part of celebrating diversity.

Is People First language important for Aaron?

Aaron is my son’s name.

He has been depersonalized, reified and labeled by doctors, psychologists and other professionals as autistic, cerebral palsied, DD, MR, sensory deficit, movement disorder, severe/profound….

In the precedent setting Roncker case, the school psychologist testified under oath that Neill Roncker and others (like Aaron) had such low IQs “they wouldn’t know the difference between sitting next to a real person or sitting next to a rock.” So segregating them in separate schools with their own kind would make no difference. She considered their education a waste of school resources. Many people still agree with her.

So, I feel strongly People First language is important. Aaron is a person first. Others can give him labels. Some are medical and diagnostic but others are cultural: brother, son, uncle, friend, neighbor….

This has nothing to do with wishing Aaron was cured. This is not denying the “autistic” culture. This has nothing to do with “disability pride.” It has everything to do with survival.

People First language reinforces the moral argument that people with severe disabilities are people and have a basic right to exist. A right to breathe, to be a member of the human race, to live with our families, go to neighborhood schools and community activities–rather than live in institutions. Check out Parallels in Time history of people with disabilities It is filled with the abuse of those basic human rights. The more we know about our history, the more we understand the need to protect our rights to “life, liberty and the pursuit of happiness.” This is a daily challenge as we fight for caring staff, decent living conditions, health care, opportunities to be safe and belong to our families and communities. There are many people who see only the disability–and think that means we don’t need the same care and support–we are not really citizens, not really human.

Aaron is a “person” with wants, needs, likes and dislikes like everyone else. He is Aaron, that unique PERSON whom I love. He is Aaron a citizen with rights.

As I look at my life as a parent, advocate, teacher and friend to people with disabilities, I find I have excluded myself from my community. Yea, me–the advocate for inclusion.

Is Mary a Person First?

All mothers understand this conundrum. Especially when your child is so vulnerable. I’ve spent many years hanging around people working for the civil rights of people with disabilities i.e. Mothers of Special Children, Special Education Parent Groups, Arc, Autism National Committee, TASH…. I am a member of Disability World. Maybe not a primary consumer, but certainly a secondary consumer.

At some point, I realized I had to reclaim my own personhood. My personal resolution to rejoin the mainstream of my community included finding writers’ groups.

OVRWA

Fortunately, I found the Ohio Valley Romance Writers of America (OVRWA) in my community. These talented women have become more than mentors, they have become friends. I learned almost every one of them has a PEN Name, some have more than one.

Men with Pens

Men with Pens has also been a terrific community for beginning writers and bloggers. I’ve met James Chartrand who also wrote about using Pen Names and Pseudonyms.

Positive Solution: Writer’s Groups and Pen Names

So, it occurred to me: What if our stigmitized “Wheelchair Becky” started to include herself in these writing communities? After all, she’d graduated from the high school yearbook committee, right?

What if “Wheelchair Becky” chose her own Pen Name, became her own person, and like Flat Stanley started to integrate herself into the community?

Pen Names

Urban legend says one way to pick your Pen Name is to:

1. Write down the name of your first pet.
2. Write down the name of your street address when you
owned that pet.

I consulted with “Wheelchair Becky” and she agreed to make this into a community-building activity at the OVRWA holiday party.

Everyone wrote their pet’s name and put the papers in one red dish.
Everyone wrote their street address and put the papers into another dish.

Then “Wheelchair Becky” with the help of a friend, chose one name from each dish and VOILA—

Smokey Woods was born.

How do we build an Inclusive Community?

Smokey Woods toasts the New Year

In the tradition of Flat Stanley and many writers, Smokey Woods began to make friends and include herself into the community. Here (at the head of the table) she is toasting in the New Year with our family. (BTW: She doesn’t eat much and is a cheap drunk.)

What a doll!

Here my precious granddaughter is playing with Smokey Woods the romance writer.

Smokey Woods is a doll, a toy. Smokey might use a wheelchair to get around, but she has a name.

My granddaughter represents the future. For Aaron, for me, for all people with disabilities. She will see people like Smokey in her classes and community. When she watches Glee on TV, she sees Artie singing and dancing. He also uses a wheelchair, but Artie has a name–and it doesn’t start with “wheelchair.”

Names matter. Aaron is Aaron. Mary is Mary.

I’m not promoting People First language because I am looking for a cure. I’m looking for survival and ways to prevent the abuse and segregation of the past. I’m looking for community inclusion.

For Aaron.

For myself and my family.

For all the next generation of little kids who will be learning about diversity by playing with dolls and watching TV.

I also think Mark Twain, Dr. Seuss and all the other writers who use Pen Names would approve.

Keep Climbing: Onward and Upward
All my best,

Mary and Smokey

Your Turn:

Did this make sense? Are there important reasons to use People First Language? Can we learn more about community inclusion and what it means to be a real person by looking at our language and the names we call each other? Do we need to study the past so we can move forward? In the comments please share your ideas.

Want to tell your story?

Writing and Blogging Course| A Game Changer

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The reason I like her is because she cares. She has values we can relate to like wanting to help writers of all ability levels, wanting the next generation of writers to write well (and that means story structure, character development, point of view, sales and business writing, and writing for change).

Plus, James is successful: Writer’s Digest named Men with Pens one of the best blogs for writers; it has over 40,000 subscribers; and she knows how to run a successful online business (and actually make money).

Do you feel like you are wasting your time and getting no comments?

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Damn Fine Words“>

Damn Fine Words is a Bargain

Damn Fine Words (Click Here For Course Information) affiliate link

Damn Fine Words starts May 17th

I invite you to join me in the Damn Fine Words writing course with the amazing James Chartrand as we learn how to become better writers and bloggers.

So many people want to give up on telling their stories. Don’t do it. Take this step with me and we’ll figure it out together.

Plus, we get to say “Damn”. Like in “Give a Damn”, “Dare to give a damn”…

Keep Climbing: Onward and Upward
Mary

Helping or hurting?

I am going to update some of the better articles I’ve written for my classes, parent newsletters and magazines. Hope you enjoy them.

Since Aaron was young, the language has evolved. When this story took place they used the words, “mental retardation,” then the words become “developmental disabilities” now it would be “intellectual disabilities.” I’m using the original words as I experienced them.

“Help the mentally retarded! Help the mentally retarded!”

I had just bought some 99 cent grapes, a pound of hamburger, loaf of bread and a couple other items to make dinner for my family when I was met at the door to the grocery by three older men wearing brightly-colored vests and hats with tassels. They were holding little cans and urging shoppers to “Help the mentally retarded!”

I grabbed my groceries and, not even looking up, hurried to my car. As I passed, one man said (in a very superior) voice, “Not all babies are born healthy.”

I felt my face flush and when I paused, he went in for his killer argument, “We aren’t ALL blessed with normal babies, you know!”

Well, that did it. Turning, I said, “I have a child who has the label of autism and I think it is very condescending to have to beg to raise money for quality services.”

Well, the men and their swinging tassels all stopped and circled me. They were aghast. “What do you mean?”

I thought about just grabbing my bags out of the cart and running to my car, but instead looked him right in the eye. “People who are retarded need real opportunities. They can be valuable workers and contribute to society. Retarded people as objects of the mercy of others reinforces the negative stereotypes of the past. In fact, now we call them people with intellectual challenges and don’t even use the word retarded.”

“But honey, last year we raised over $300,000 in our state.” The man straightened his hat and looked like I had sucker-punched him in the gut. “One-third of that money is going toward adding a retarded adult wing onto Children’s Hospital. Also we began a new women’s group home. We stand here in the rain and cold to help. We are volunteers. We don’t get anything out of this.”

At the entrance of the store a crowd was now gathering. I knew he was probably a nice man only trying to do his Christian duty. He was sincere and dedicated, only ignorant of the principles of normalization and inclusion. The staring and frowning faces of the crowd told me they were on his side. I half expected flying can goods to start stoning me. After all, who takes on God’s Knights right in front of Krogers?

I certainly didn’t plan on making a scene. So, giving the man a smile, I just said, “Well, I serve people who have developmental disabilities in other ways” and tried to push my grocery cart around him.

He gently put his hand on my shoulder and assured me God would take care of me and my son. Then, to show no hard feelings, he put three Won’t you give an extra inch? wooden rulers into my bag.

Well, once again I had done it. My husband is always telling me to lighten up and get a new hobby. For Pete’s sake, here I was in a confrontation in front of the grocery store.

Perhaps next time I’ll just drop a quarter in the cup and make the man happy… but… in the meantime, I’ll work “inch by inch” to replace the poor helpless eternal child stereotype with an image of a citizen with real value, dignity and rights.

Share Your Thoughts

How would you handle this? Have you had similar experiences?
The kicker is that Children’s hospital no longer even wants to serve adults with disabilities. Do you think that is a good or bad thing? Also, in 2012, the Knights would be saying, “Help the children with intellectual disabilities,” right?

Writing Changes Lives.

Each day we read stories of abuse and neglect of people with disabilities. Today it’s a father telling the story of his ten year old son with autism who wore a wire to school and articles about Dr. Phil’s show on mercy killing.

This blog, Climbing Every Mountain (CEM) is one small voice for the rights, dignity and community inclusion of people with severe disabilities and their families. From an inclusive paradigm, I try to make sense of what is happening to our vulnerable children and friends. I hope to use my writing to tell the story, problem solve, teach, inspire and keep the dream of a good life alive. I hope to change lives.

Whether I like it or not, I feel my life work is to keep writing about my son Aaron, who has the label of autism, and other people on the fringe of society.

Our hope for a better future comes from feeling empowered to make a difference, not waiting for others–if there is only silence or chaotic noise nothing changes.

I’m convinced communication and writing are the tickets to change. So the writing better be damn good. Right?

Damn Fine Words (link) is currently having a writing contest.

Damn Fine Words (link) is a course on how to improve writing skills for blogs and online businesses. So of course, you enter the contest by writing a post on your blog. (Don’t you love functional assignments?) It is taught by the talented James Chartrand of Men with Pens fame. I want to win a scholarship to this class, so this post is about “Why becoming a better writer could change my life” and “Why writing is important to me and my business.”

Adaptation and Accommodation are a Way of Life

CEM readers are important, the focus and integrity of staying on the topic of inclusion is important. I just can’t jump off on a contest tangent. Hey, all that guilt!

But special educators are crafty people *smile* who learn how to adapt, right? So, I’m going to give my contest information in the traditional I.E.P. (Individualized Education Plan) of Goals, Action Steps and Reevaluation to demonstrate how the I.E.P. Process is useful in not just Disability World, but in real life.

Evolution of my Thought Process about Writing

I.E.P. Vision, Goals, Action Steps, Evaluation

Vision: Write about living in an inclusive world where everyone belongs and individual differences are valued as strengths.

Book

Goal 1: I wanted to write a BOOK about Aaron’s story and talk about inclusion—not just to special education types or the learned choir—but to normal people. Makes sense, how are we going to be inclusive when we only talk to each other, right?

Action steps: Five years ago, I entered a contest with Writer’s Digest. (See a pattern here?) I won a subscription and began to relearn what I knew about adjectives, exclamation points and the basics of grammar. I learned about voice, point of view, plots, storytelling, story structure…. I joined WD’s Forum and learned about editing, publishing, authors and these new things called blogs and social media. I met writers who recommended blogs like Men with Pens. I joined a local writers’ group.

Evaluation: I wanted my writing to be powerful and inspire others. Yet, the more I learned, the more I needed to learn.

Evolution One: Book to Blog

Revised Goal 1: I wanted to share Aaron’s STORY and talk about inclusion with as many people as possible. (Same goal only forget the book format.)

Seth Godin (blogger extraordinaire) suggested writing a blog instead of writing a book: Traditional bookstores and publishing houses were closing; Blogs could immediately reach people around the world; Posts would be available indefinitely; Blogs could become online businesses; and, It’s possible to continually update the story.

Action Steps: I subscribed to about 20 blogs on writing and did an ecological assessment of how to be a good follower, tribe member, “true fan.” I discovered blogging was damn complicated. I put in a Gladstone’s thousand hours of study–I needed to learn about writing sure, but also about branding, design, marketing, small business, technical “backend” systems, and a whole new language of SEO, HTML, B2B, copywriting, white papers, sales letters, analytics, “black hat,” “long-tail keywords”… a new vocabulary and alphabet soup that competes with special education in its complexity.

Evaluation: A blog made sense for a story like Aaron’s, which continues every day. I needed to increase my learning curve and find mentors. So, same goal of spreading the inclusion message with words, different format–book to story to specific blog and potential business.

Evolution Two: Climbing Every Mountain Blog

Revised Revised Goal 1: I want to share Aaron’s STORY and create an online community for people who care about adults with disabilities and pay its expenses. Again, same goal, specific format and possible business.

As Special Education has been attacked and adults with disabilities are given few options, even an idealist like myself knows the hope of an inclusive community has deteriorated and become even more elusive but… the journey continues. We can’t give up; we have to keep climbing that mountain.

Action Step for Aaron’s inclusion: (Walking the Talk) In the last couple months Aaron moved into a new home closer to ours, began a new day program and new residential provider. I made changes in Aaron’s life and showed our county how to start some inclusive programs. This gives me the credibility and authentic voice to share my ideas.

Action Step for blog: After much encouragement (thank you everyone), I finally began my blog http://ClimbingEveryMountain.com in July, 2010.

Evaluation: Most feedback has been positive, but a good friend said she quit reading my blog because my posts were negative and focused on my son’s “sucky life” when I should only be talking about the good things that happen to him—that comment paralyzed my writing.

My previous lack of confidence, self-esteem, courage, technical skills and motivation are nothing compared to that bullet to my heart. Is she right? Is my writing helping or hurting others?

Success Stories:

The good news is:

I’ve had amazing visitors who are leaders in the fields of both Inclusion and Social Media.

Professors from two university special education programs assigned my blog for their classes.

A state autism agency wants to feature my blog on their site.

Statistics:

As of today, I have 135 subscribers and have written 137 posts. I’m proud of my content, but there are few readers with almost no comments or discussion–certainly not the “basecamp community” I had hoped for.

In April CEM averaged about 30 readers a day and visit duration was 1:47 minutes. There is about an 80% bounce rate.

Each post takes me about 6-10 hours to write and format.

I’ve taken online courses, and as I recovered from recent health issues I identified several problems: no niche viability, no products, and I am the most untechy person you will ever meet.

How Damn Fine Words (link) could change my life.

Specific ways DFW would help be become a better writer and change my life:

I want to write powerful and important stories with information which can change people’s lives. DFW will teach me better ways to tell the story and teach information

I have an important story that only I can tell. DFW will give me the external validity that I am on target and my writing does reflect my mission. The members of DWF are not part of special education or Disability World, so their honest objective advice will help me evaluate the success of my message for a general audience.

My story is about the journey, it does not have a typical happy ending (no one is cured or ever will be). So I need to have humor, optimism and inspire others in their own, equally difficult, journeys. DFW will suggest guidelines and give me objective advice regarding finding a balanced approach.

When my friend says my posts are negative, is she right? Am I wallowing in a pessimistic attitude and self-pity? DFW and the student forums could give me a clue. This would change my emotional life.

Because of the complexity of the message, I need to write simply, with clarity and stick to one message at a time. DFW will teach me achieve message discipline.

My blog needs to be technically sound. DFW will give me technical advice i.e. I have no idea how to create bullets or get to be an Amazon affiliate.

I want to have great content for the state website. DFW will help me structure my posts and hopefully speed up my writing process.

I have several articles I could make into eBooks or PDF handouts. DFW could give me advice.

I would like to create some video and other media for my blog. DFW could give pointers and the confidence to stretch my skills.

I would like to learn more about becoming a freelance writer. This new career would significantly change my life. DFW has that information.

I would like to monitize my blog enough to cover expenses and perhaps make purchases like a video camera and document scanner. DFW might be able to help me.

Bottom Line:

In Special Ed lingo, Damn Fine Words would be the related service.

In regular words, Damn Fine Words would help me up my game and ease my anxiety:

Are my current efforts a waste of time and energy?

Am I helping people get the information and encouragement they need to change their lives?

Am I good enough?

How can I get better?

Damn Fine Words would help me answer these questions and move forward.

I think Damn Fine Words (LINK) is the answer. I’d like quick miracles of course, but it would be an honor to mentor with James and learn whatever she thinks is necessary. I like to be around people I consider “THE BEST.” James has great values and experience. I’ve already learned so much from Men with Pens. I like to learn. I like to be in classes where there are high expectations, structureed lessons, deadlines and a teacher who, if needed, will kick butt.

I don’t deny I need the confidence, self-esteem and encouragement to take risks. I don’t deny that I get scared that if I fail in this, I will need to rethink my life goals and start over.

My outcome and true measure of success would be to end the Damn Fine Words (LINK) course with new knowledge, new friends, something to sell on my blog and a guest post ready to submit to Men with Pens. This would indeed change my life.

Dear Readers of CEM,

You might also want to enter this contest. Many of you have talked about starting your own blogs. Need is relative. I have more financial resources than some, less than others. I’m sure there are others who are more worthy.

My thoughts in this post on writing may or may not have been interesting to you. But at least you know I keep trying to get better and see the evolution of my thinking on writing. Only time will tell if I make it from the caterpillar to the butterfly.

I hope you will also keep journals and document the stories in your lives. Our silence gives the power to the people who are lazy, abuse us and reinforces the status quo. Can there be any more important goal for each of us then to tell our story and share the journey? Our children’s future depends on our writing, our voices, our advocacy.

Keep Climbing: Onward and Upward
All my best, Mary

Our Family 1980

Aaron at Piano 2011

April is Autism Awareness Month. For those who are new to our community, I thought I would reprint this post because it talks about important issues. I hope you will feel free to share your thoughts in the comments.

Can I love Aaron and hate autism?

If I say, “I love my child, but hate cancer or heart disease…” many people would say that is okay.

If I say, “I love my son, Aaron. I hate autism.” some people would say that is NOT okay.

So, call me a villain, ignorant, hypocrite, politically incorrect, or whatever–but I refuse to celebrate autism–I refuse to give autism that power.

I gladly celebrate the diversity of individuals. This diversity makes our world stronger and a more interesting place to live.

I love individuals who have autism, just the way they are.

But–I will not celebrate autism like it is a good thing.

World Autism Awareness Day

I found some of the World Awareness Day press curious: “In fact a world without Autism would be a lesser world.” (New Zealand.)

Here is my post about Autism Awareness Day asking people to do more than just wear blue.

The United Nations has established April 2 as World Autism Awareness Day. Great! Let’s talk about autism.

What causes Autism?

Well, no one knows for sure. The “experts” have narrowed the cause down to: environmental, biological, sensory, abuse and neglect, genetic, chemical, neurological, food…and the ever popular–it’s the parent’s fault.

So the short answer is, who knows?

Yesterday someone told me our children have autism because they don’t get enough eggs. Just add that to the list. They might be right.

Dr. Anne Donnellan spent her career working with families and people with autism. She often says, “The more theories, the more proof that we don’t know.” She also gives her version of circular logic in Disability World.

Circular Logic

Parent: My child keeps flapping their hands.

Doctor: Ah, that is because your child has autism.

Parent: How do you know?

Doctor: Because your child flaps their hands.

Is Autism the Greatest Gift?

Some advocates want you to think autism is the greatest thing ever. They talk about the special abilities of people on the autism spectrum and say it is only because of autism they have these talents.

Hummmm. Is that so?

Sure Temple Grandin, with a glance, can tell how many nails are needed to build a livestock yard–but is that only possible because of her autism?

Rainman could count the number of toothpicks on the floor. Is it possible there is someone else in the history of the world that could also do that?

Are we again caught in circular logic?

Parent: My child can count the number of nails or toothpicks.

Doctor: Ah, that is because your child has autism.

Parent: How do you know?

Doctor: Because your child can count the number of nails or toothpicks.

There are some people with the label of autism who can tell you the day of the week for every calendar year in recorded time.

I can’t. Probably you can’t. But, is it possible there is at least one other human being without the label of autism who can?

The Guiness Record books are full of typical folks who can do all sorts of incredible tasks.

Hurry, quick. Do we now need to give those persons the label of autism?

There are some who are going back to past genius’ and claiming they must have been autistic…Mozart must have had autism. Disney perserverated on those mouse pictures–he must have had autism….

Couldn’t Temple Grandin just be a talented person? Isn’t it demeaning to say, “No, Temple has nothing to do with it, it is only because she has autism.”

Is it possible the statistical increases in the number of people with autism is partly due to our current scientific paradigm of labeling and sorting people? And some people promoting “autistic envy”?

What is normal?

Well, turns out we don’t really know that either.

Sure we have tests, but anyone who studies IQ or other quantitative or quantitative measures will point out the flaws.

Multiple Intelligences| Howard Gardner

Howard Gardner, studied people with autism who were labeled as autistic savants (actually “idiot savants” was the term used at the time). He was able to identify at least eight different kinds of “gifts or intelligences.” Now, in every school in the world (that uses best practice) his theory of multiple intelligences helps all children learn. Gardner says each of us has all these eight intelligences, some are just more developed than others.

This is one of the side benefits of autism. Without the diagnosis of autism, the scientific community might have had a harder time making this discovery. Science needs large groups.

Could it be we all have gifts and traits of genius, gifts and traits that could be labeled as autistic? Are we all a little autistic?

Stinkin’ Thinkin’

So, what’s the deal about autism? Can’t we just celebrate individual diversity?

If we really believe autism is a tremendous gift, then it would be logical for each parent to wish their child would have autism. Right?

I once went to a conference for people with Down syndrome. Everyone kept talking about how people with Down syndrome were the happiest people in the world–how glad they were to have their child in their family. They used examples like, “They will always believe in Santa.” “They are pleased when I fix them chocolate milk.”…

Using circular logic:

Parent: I want my child to be happy.

Doctor: Children with Down syndrome are happy.

Parent: Then I want my child to have Down syndrome.

So, if we want our children to be happy maybe we should try to figure out how to add an extra chromosome to our babies DNA.

If autism makes us gifted, maybe we should be researching how to make 100% of the population have autism–add autism magic to our babies’ lives.

This kind of thinking is just nuts, yet it is common in each area of disability. Stick around Disability World and you will hear people yearn to have the courage of people with cystic fibrosis and muscular dystrophy, be sexy like people with cerebral palsy….

Okay, I understand some advocates are probably hyperventilating at this point. How dare I talk this way about people with autism and Down syndrome?

The person who gets joy in Santa, or in having chocolate milk is an individual. Each individual person–even if they have a label– is different.

We can love the individual–not the disability.

As family members, friends and as self-advocates, we can value the individual person’s talents, gifts, joys and sorrows. We can see them in the context of their environments–but, we don’t have to give all the power and credit to the label of disability. The individual should get the power and credit. They are the ones who are who they are.

I can love my Aaron–I don’t have to love autism.

I can see Aaron’s gifts and talents–I don’t have to think they are only because he has the label of autism.

Aaron is a loving person who makes kissing noises as I turn out the light. He smiles when I pull on the toes of his socks. He gives me hugs when I walk past him. He is patient as I try to figure out what he wants. He concentrates on his books and loves pictures. He gets excited when I come in a room. I love when he relaxes in his bath. I love when he initiates a song or going to the bathroom. I love when he figures out how to eat the cheese off my sandwich….

Aaron is unique. He adds his own version of diversity to the human family. He is a great son, brother, uncle, friend… just the way he is.

Autism sucks. Aaron doesn’t.

Autism affects each person differently.

In Aaron’s case, Autism means he can’t talk with words. It means he is 36 years old and can’t always tell when he needs to go to the bathroom. It means he has trouble making friends. It means he yells in public restaurants. It means he has motor difficulties and has trouble walking–crossing from the rug to a tile floor. It means he is always afraid of falling and losing his balance. It means he bites his hand to calm himself. It means it takes him a long time to learn things. It means he will forget them if he doesn’t practice them every day. It means he likes music, but not loud noises. It means he likes to be moving (in cars, buses, boats, planes…) It means he likes to swim, but not bend over. It means he can’t tie his shoes or dress himself independently…it means he cannot be left unsupervised even for a minute.

That all sucks.

I wish it was easier for him. I wish it were easier for me to help him.

But all those difficulties don’t mean I don’t love Aaron with every fiber of my being.

Each day for the last 36 years, I work to get Aaron the support he needs to live, work and recreate in his community. To allow him to be the best person he can be–For him to be able to make choices and have opportunities he wants.

There is a difference.

Dream Plans for Aaron Ulrich

I am adding our dream plan for Aaron. You can click on each of them and see I am NOT trying to cure Aaron. I am NOT trying to make him a different person. I love and respect him as the person he is.

I am NOT trying to make him the person I want him to be.

The first one we wrote in 1981 when he was 6 years old. Dream 2: 1989 The next Dream 3: 1998. And, Dream 4: 2010 which I wrote last year.

Every day Aaron teaches me about courage, love, and tolerance. But he knows he can count on me, my husband, and his brother. He knows Annie, his caregiver will do her best to look out for him. He knows his housemate Jack will be there for him. He knows his grandma and extended family including Ana and his niece love him just the way he is.

And until our dying breaths, we will do our best to make his life happy.

No, I’m not going to inject Aaron with an extra chromosome to make sure he is happy. No, I’m not going to give this thing we call “autism” supernatural powers to dominate his life.

But I will give him opportunities to make choices about his life as best he can–in spite of “autism.”

Yes, I can Love Aaron and Hate Autism.

Autism Awareness Day Marching On

Celebrate each wonderful individual person you meet in this video.

Keep Climbing: Onward and Upward.

Mary

Comments:

Are you sitting there thinking, “she just doesn’t get it?” Are you upset? Do you agree? Do you think “Disability World” thinks different than “The World”? Can we separate the individual from the label?

Tale of Two Brothers: Sibs of People with Disabilities

Tommy and Aaron hiking in Smokies

All boys and girls grow up into adults. If the statistics are correct that one in 88 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.

Aaron pusing Isabella in stroller

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