Archive for April, 2012

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

Tale of Two Brothers: Sibs of People with Disabilities

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

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

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

Dignity of Risk

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

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

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

What a great brother.

LIFE IS GOOD!

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

Sister “Deebah” makes a video about her brother

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

Time magazine article by Noah’s Brother

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

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

Another Quote:

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

Comments Welcome

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

Keep Climbing–Onward and Upward

All the Best,

Mary

9999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999999 April, 2012 is Autism Awareness Month

Is Autism just the Disability du Jour?

April 2 is World Autism Awareness Day and in the US, the month of April is “Autism Awareness Month.”

Autism and the public service announcements are everywhere on TV:

• 1 in 88 children is now diagnosed with ASD.
• Early Childhood intervention programs help.
• People with autism can be smart.
• A child with autism can happen in any family.
• Many celebrities have children with autism.
• Shows as diverse as Desperate Housewives now have storylines about people with autism.

This is all good, right?

Gone are the days when parents were told their children were withdrawn because they were poor parents and “refrigerator mothers.”

Gone are the days when, with my son Aaron, we were told, “The chances of having a child with autism were 1 in 10,000.”

Gone are the days when we were told Aaron would always be in the “idiot range of mental retardation.”

Gone are the days when anyone who was different was sent to the “state hospital or institution” to make the community safer.

Gone are the days when people with intellectual disabilities were given “radiation” in their oatmeal because they weren‘t really human and were only useful for human experiments.

Gone are the days when, there was no mandate for early intervention programs.

Gone are the days when, we segregated people with autism into separate classes, schools and institutions away from their brothers, sisters, neighbors and community…. But wait!

Gone are the days when no one knew the best educational practices and the children spent hours doing meaningless tasks focusing on “curing” the child. But wait!

As the “autism awareness” campaigns seem to focus on using fear tactics to raise more money and get more segregated “autism-only” programs, I have to wonder if this really is a good idea.

God help us if the current trends toward “autism only” programs undermine everything we have fought for and learned in the last 40 years.

Some of the things we have learned are:

All people are human and have dreams, feelings, and hopes for the future.

All people have gifts and strengths.

All people have personalities and can love.

All people can learn.

All people benefit from early childhood programs.

All people benefit from differentiated instruction and universal
design.

All people need support and to learn to be interdependent on others.

All people have the right to life, liberty and the pursuit of happiness.

All people can communicate and have important things to say.

Behaviors equal communication.

People with autism and other labels can be contributing members of society.

People with the label of autism, are not much different than the label of cerebral palsy, spina bifida, ADHD, cancer… or people who are poor, elderly, sick… er, “normal.”

The real way for the general population to understand and have an “awareness” of people who are different than they are, is NOT just a television campaign or a designated month.

The best way is for everyone to have first hand experiences:

Do you know that person’s name?

Do you see them in the grocery store?

Do you share time with them at Church?

Do your children go to school with them, play on their sport’s team?

Are they invited to your house, to birthday parties?

Do you see them working in real jobs, doing volunteer work, sharing their talents?

Do you enjoy being with them?

Do you allow them to grow up and become adults?

How can we teach self-determination and better communication?

SHOULD NOTS and SHOULDS

Autism Day, Autism Month, Autism Awareness SHOULD NOT be about spreading fear or all about a “Diagnosis.”

It SHOULD be about the difference between having a disability and having a handicap?click here
Autism Awareness SHOULD be about more research, certainly. But, the research should be to ask questions, NOT to provide answers—in 2012 we don’t know enough to have answers.

Did you know that Howard Gardner studied people with autism when he came up with the idea of “multiple intelligences”?

Did you know Vygotsky examined people with severe communication problems when he developed his communication ideas on “scaffolding”?

Autism Awareness SHOULD NOT be about raising more money for those parents, professionals, for-profit and non-profit groups that are on the “Autism: disability du jour” bandwagon. They are no better than speculators benefitting from a war.

Autism Awareness SHOULD NOT be about making more segregated autism-only day programs, farms, residential communities, schools, classrooms, soccer leagues and summer camps.

Who would ever think putting a group of people with communication issues together would be a good idea? What they need most is interactions with others with strong communication skills.

Autism Awareness SHOULD BE about noticing and appreciating ALL people who are part of our human community.

It SHOULD NOT be about charity, pity and sympathy but rather about giving ALL people the freedom to grow up and be the best person they can be—just as they are: able to make their own decisions; be treated as adults; made mistakes; and, loved because of who they are.

Autism Awareness SHOULD be about the concepts of “normalization” and “inclusion.” It SHOULD be about looking at people in the normal lifespan, normal opportunities. Not about fixing them with lots of therapies and aversive methods of behavior control.

Certainly, I have written many times about how Aaron and others need more support and people who are trained to work with them.

Certainly, I agree there is a desperate need for help for parents of adults to be able to find resources for their children.

Certainly, I have written of what a “Dream Plan for Aaron” would look like. And that includes Awareness–But much more.

Is Diversity Beautiful?

Challenge

People with autism have taught us much about love, interdependence, talents and courage.

Can you try to get to know a person individually? Can you listen to them? Can you help them be a bigger part of your life?

If so, then April can be a month of great hope.

The earth’s bounty blesses us with many different kind signs of spring. The flowering magnolias, dogwoods, apple and pear trees each add color and diversity to our world. The tulips, daffodils, crocuses each speak of the beauty of variety and remind us the earth is being reborn. Would we only want one kind of tree blossom or flower? Should we identify, diagnose and separate the trees and flowers and only celebrate the most durable or productive? Or is their beauty even in the most vulnerable blossom?

Can we appreciate and value a great diversity in nature? In people?
Maybe the most beautiful flower in the world, is really the beauty in a person.

Comments

I’m hoping you will share your comments and thoughts about people with autism? What are you doing this month to celebrate diversity in ALL people?

Keep Climbing: Onward and Upward
All my Best,

Mary