Archive for the ‘Climbing Every Mtn Blog’ Category

photo credit: smcgee

Happy First Birthday| Blog for Parents and Caregivers of People with Disabilities

Can you believe it? On July 21, 2011 ClimbingEveryMountain.Com celebrated its first birthday.

Fellow Climbers

Parents, Caregivers, Advocates, Friends

Parents, Caregivers, Friends and Advocates of people with disabilities need each other. Our journey up the mountain is exhausting and treacherous.

We climb, not because we want to, not because we think it is a fun challenge, not because “it is there”—we climb our mountains out of need—OUR CHILD’S NEED, OUR NEED.

For the past year, this blog has been a basecamp where interesting people from around the world add their ideas, personal stories, ups and downs, advice and expertise. To everyone in our Climbing Every Mountain Community, your love and friendship means so much.

There have been 120 blog posts of original content and 1,261 comments. Here are the first posts which explain what this blog is all about. I’ve updated a couple things, but the mission holds true. I hope you agree.

Shouting my Commitment | Is anybody there?

Climbing Every Mountain is a Team Effort| What this blog is about

I am thankful for each of your comments, emails, phone calls and the many other ways you have reached out to our team. Together we are better. Together, we can each work for inclusion in our own way, and the ripple effect will be that our individual efforts will change the world, not only for people with disabilities, but for all of us.

Google Analytic Statistics for July 21, 2010 to July 21, 2011:

There have been 12,184 visits to http://ClimbingEveryMountain.com from 114 countries/territories. The top ten include: US, Canada, United Kingdom, Australia, Philippines, India, Ireland, Brazil, South Africa, New Zealand….

3,664 returning visitors. 19,216 Page Views. 1.58 pages a visit.

I’m sure some of these visitors were looking for The Sound of Music or some mountain peak vacation adventure, but I know many were looking for our basecamp for parents, caregivers and advocates. I know Google expects visitors to spend more time on the site and look at several articles each visit, but thank you for a terrific start.

photo credit: hfb

Tech Support

Climbing Every Mountain has a terrific group of people who help with the tech support. I’m a novice blogger and they have held my hand and guided me up the social media mountain. Real mountain climbers need good equipment and guides, thanks for giving me a safety net and strong lifeline:

Tim Gary

Mindcue: Brilliant Ideas Deserve Brilliant Websites (security, tech support, hardware and software issues, fighting off hackers, bad guys, and encouraging a very insecure webmaster.)

Johnny B. Truant

Johnny creates inexpensive websites and helped me with the start-up, plus he coauthored, Question the Rules, a course for non-traditional thinkers.

Cheerleader Team

Alison Golden

The Secret LIfe of a Warrior Women Alison is my blogging partner and has been a terrific source of information and encouragement. We met at Question the Rules. She is a strong advocate for her children. Her gentle spirit and humor are her secret weapons in being a warrior woman.

A special shout-out to my friends at OVRWA. You help me believe in “happy ever afters” and pick me up when I post an article and get more spam than comments.

Learning to venture into the real community outside Disability World is one of the cornerstones of inclusion. If we want this for our children, we need to learn to build community for ourselves. Alison and OVRWA are helping me learn to be “normal.”

Mentor Team

Sylvie and Michel Fortin

Success Chef Academy Every Wednesday night, Sylvie and Michel serve up an “over the shoulder” look at how to create your own success story. In their informal style, they have taught me about the back and front end of an online business. I’ve come to depend on their advice and personal encouragement. Many of my future goals for Climbing Every Mountain are based on what I am learning in the Success Chef Test Kitchen.

James Chartrand

Men with Pens has also been generous in her encouragement. She is working for social justice in her own way, and reminds me each website must have simple design and good writing. It was her gentle push that finally gave me the courage to take the leap into blogging.

Chris Brogan

Chris Brogan has more ideas than anyone I know. He also takes those ideas and makes companies, and they make money. (That’s certainly different than anyone I know in non-profit and disability world.) He has a geek brain, but… he can translate it into everyday, everyman language. Chris made one tweet about Climbing Every Mountain and I got more traffic that one day, than in a month. He is the guru of social media and helps non-profits. Plus, he talks about his kids and parents. Pretty neat.

There are many others, thanks to each of you.

photo credit: Ѕolo

Aaron wouldn’t let us end a birthday celebration without a song. Blake Roberts suggested The Climb as a theme song for our Climbing Every Mountain blog. I would like to ask you to listen to the inspiring words and feel proud of everything YOU have accomplished this year. Enjoy the digital magic created by Blake Roberts and Snoopi Botten using DecTalk, an augmented communication software program.

Pastor Snoopi Botten and Blake Roberts have added their magic digitalized effects to The Climb, (click on link).

Keep Climbing: Onward and Upward.

Mary

Comments:

What was your favorite post this year? Any suggestions or comments for next year?

Popular articles:

America the Beautiful|Through the autism car window

For more about Blake Roberts and Snoopi Botten, check out Do you hear what I hear, Do you see what I see? for their amazing story.

photo credit: Okinawa Soba

BULLETIN BOARD

 The Climb: New Theme Song for our blog

Attention all music lovers:  Pastor Snoopi Botten and Blake Roberts have added their magic digitalized effects to The Climb, (click on link).

Blake suggested this song become the Theme Song for the Climbing Every Mountain blog.

It’s PERFECT and their effects are pure magic.

You might remember both Snoopi and Blake shared their version of the  classic  Do You Hear What I Hear (click on the link) on Christmas Day. 

Check out their earlier post for their amazing personal stories and the details of their method for helping us all hear and see things in different ways.

Thanks to both Snoopi and Blake for being part of this community.

————————————————————————————

Pete Wright, Esq. of wrightslaw.com

Two Workshops in Cincinnati, OH to discuss the educational implications of chronic illnesses/disabilities. These workshops should be great for anyone interested in recent changes in IDEA, 504 et al… and children with chronic health needs.

 APHOES National Conference:  May 5-6 

Special Education Law and Advocacy Program:  May 7

For conference agenda and registration click on links.

If you have any questions, please contact the School Intervention Program at 513-803-0513 or by email (SIP@cchmc.org).

Ed Roberts Campus in Berkeley, CA

Thanks to everyone who Tweeted, Facebooked (is that a word?) and otherwise shared information about Ed Roberts and his first official memorial day in California

The Ed Roberts Campus at Berekley California is now officially open. The campus uses Universal Design and is built for EVERYONE. Here is an article about how the archetic had to think differently about successful design. It is across the street from a fully accessible transportation system. Win-Win.

We had a great response to reformating the historical videos into segments for YouTube. We are creating a plan for moving forword. As we get news, I’ll pass it on. Thanks to everyone who so generously contributed in any way to this important project.

The Inclusion and Disability Rights Movement has come a long way, yet we have so much farther to go.

Adapting: Becoming a Star

Ed Roberts often joked that in the first 14 years of his life he was “just an ordinary kid.” He was more interested in sports than in school work and wanted to be a professional baseball player when he grew up. That all changed.

In 1953, before the vaccine, Ed contracted polio. Overnight he became paralyzed from the neck down and required an iron lung, which he used the rest of his life.

One of Ed’s greatest talents was being able to look at a situation, and ADAPT.

Ed decided a baseball career was out, and became a straight A student in High School.

When all the students stared at him, he decided this was an attitude problem. Instead of being embarrassed, this was how it must feel to be famous. In time, he reframed the whole experience, adapted, and decided he would pretend to become a famous movie star.

Indeed he did become a star. How fitting we are now trying to get his video on YouTube. I think he would get a bang out of that.

Stares into Stars

This would also be a good tip for people who are being stared out. Parents, Caregivers, Teachers could all adapt this strategy and help “reframe” those stares into stars!

Skype and Technology

I just saw a video (2010) where a teacher and class used Skype to help one of the students who had cancer keep up with what was happening at school.

When Ed Roberts got Polio, (1952) he was quarantined and had to listen to his classes over the telephone. Think of the differences.

Skype would have been amazing to him.

When Ed returned to school after missing almost two years of school, he felt like a stranger. Not only had he changed physically, he was now paralyzed, but he carried the stigma of “polio” and having a “Quarantined” sign on his front door.

At 16, Ed had to start his life and start making friends all over again. Plus, with the stigma of “polio” people were afraid of him and he looked so “different.” If the students could have seen him over “Skype” they would have seen him evolve, and gradually they would have adjusted to his new learning style and physical appearance. It would have been a learning experience for all of them.

It’s nice when students send get well cards, but including the student on Skype shows another dimension of caring.
BTW: home with Skype is the least restictive environment for this child at this time.

The new Technology Act will make other learning opportunities available for people of all ages. Who knows what the future may hold.

Your Turn

Any other tips for reframing embarrassing situations Stares into Stars? Any other uses of technology you would recommend? What would you want if you had to miss school for a long time?

Keep Climbing: Onward and Upward.
All the best,

Mary

Ed Roberts

VIDEO Strategies for Social Change: Ed Roberts speaks at first meeting of Partners in Policymaking .

This is all Ed Roberts’ fault!

Ed Roberts was a civil rights leader for people with disabilities who was called a “prophet for independence.” He challenged each of us to be extraordinary.

This could be Chris Brogan’s fault!

Chris Brogan is a socially conscious social media guru with thousands of readers. He recently challenged his readers to use the oldest form of exchange–barter. Bartering in a Digital Age is about finding a way to get the services or goods you need. No excuses. If you can’t afford or don’t know how to do something, barter.

It’s the MN DD Planning Council’s fault!

The Minnesota Governor’s Developmental Disabilities Planning Council has been documenting the paradigm pioneers in the History of People with Disabilities for over a decade. Parallels in Time I and Parallels in Time II.

Since most history books ignore people with disabilities, these are important historical videos.

Okay, it’s my own fault!

I contacted the MN DD Planning Council and asked if any of their videos were in shorter segments. Dr. Colleen Wieck, the director said she “wished,” but there were no resources to edit or transfer the videos to YouTube.

I knew blog readers want short video segments, so there was the problem.

So now, Ed Roberts meet Chris Brogan meet MN DD Planning Council meet… er, me…meet YOU.

WE NEED YOU

Do you have the technological skills to edit videos like the Ed Roberts video (above) into three or four, 1-5 minute segments?

Could you help us post them on YouTube and the Parallels in Time website?

If you could help us with just one video, that would be significant.

In exchange, you choose a job for me, from the list below.

Let’s Make a Deal

EXCHANGE—an hour for an hour, my services for up to 50 hours.

NO MONEY will be exchanged.

How Can I Help?

I’ve have experience working with individuals and families. I could consult with you by phone (in US) or email. (Check out my “About” page.)

I’m a decent Beta Reader and developmental editor. If you have a novel or ebook sitting in your closet, I can help.

I could ghost write a blog post, review a book or education/teaching product.

I could research a topic (of your choice).

Any other idea we mutually agree on.

Disclaimer: I’ll give you my best, but no guarantees. I can’t cure anyone.

FOR THE SKEPTICS

This is a labor of love. I’m volunteering, no financial gain. Many of the people in the videos were friends or colleagues, many are now gone, but their vision lives.

This is important work. It’s been a long road for people with disabilities and their families, we need to keep moving forward.

Even if you don’t have a family member with a disability, there are good reasons to get involved.

We have knowledge and experience in quality of life issues and long-term care that will help Baby Boomers, seniors and others who are in the “temporarily able bodied” or “yet to be disabled” group Ed Roberts spoke about:

“We’re all getting older. We can’t avoid it, can we? I look around, and I notice that a lot of us are getting gray. As we get older, we realize that disability is just a part of life. Anyone can join our group at any point in life. In this way, the Disability Rights Movement doesn’t discriminate. As those of us who are temporarily able-bodied and working for access and accommodations now get older, the changes we make now will benefit us as well.”

CONTACT INFORMATION

If you are interested: FIRST COME FIRST SERVED. You get to pick the video you will work on.

1. Go to: Parallels in Time II videos or the Ed Roberts Memorial site.

2. Choose a video you would like to edit into three or four, 1-5 minute segments. (I can help you pick out the segments, or you can choose what you think is the most powerful.)

3. Email me at MaryE.Ulrich1@gmail.com and we’ll mutually decide the barter exchange.

4. We both get to work. Deadline March 1st.

Watch Our Progress

Every Friday, I’ll post how things are going. If this is not a good time for you, but you know of someone who might be able to help with this project, please forward this information.

All prayers and best wishes welcome.

Keep Climbing: Onward and Upward

Mary

Comments:

If you have questions you think would be helpful to the group, please ask here. Otherwise, contact me privately.

What do you think? Will the barter system work? Will these edited videos help spread our message of independence, interdependence and inclusion?

Can you help us, and as Ed would say, “Be Extraordinary?”

photo credit: horizontal.integration

Today is Jan. 1, 2011– or 1.1.11

That’s a lot of ones: Day One; First Month; New Year and Decade.

Could this be a cosmic sign?

Could this be the year of the Power of One?

We can celebrate with fireworks, silly hats, black-eyed peas and sauerkraut. We can dress in yellow (for prosperity) or white (for peace) while throwing pomegranate seeds on the roof and making wishes for 2011. But, this new decade and new year will race forward–with or without us. In 365 days, it will become 2012, and then 2013, 2014…. The cosmic universe doesn’t care about individual people.

Actually, that is a comfort. I don’t want to be Atlas holding the world on my shoulders. I don’t want the responsibility of saving the world, that’s too much.

Systems Theory–Circles of Life

Bronfenbrenner’s systems theory states that what affects one part of the system affects all the parts of the systems. In previous posts on the circle of life and family reunions I’ve talked about his embedded systems (like Russian Dolls). The individual is in the center circle, surrounded by the family, surrounded by the community and “systems.”

Inner Circle: Aaron

When Aaron, my son with the labels of autism and developmental disabilities was growing up, I made specific dream plans and goals to include him in an inclusive community.

They were audacious plans. But we had IDEA and ADA and hope. And Aaron was young and had lots of years ahead of him. I thought the values of ALL people living and working in an inclusive community would keep evolving into a more accepting world. I thought I could count on the professionals, the local, state, national agencies and organizations to help.

But those systems don’t exist for adults with disabilities and/or their families.

Aaron is 36 years old. For adults there is no mandate or law saying he can get services. So we have watched as his behavior and communication have deteriorated. And, frankly, I have even had trouble envisioning a new dream plan.

This past year has been a painful experience watching the residential and vocational companies NOT want Aaron–but want his Medicaid Waiver funds.

The opportunity on 1.1.11 is to dream again. It’s time to use the Power of One.

The Power of One: For Aaron

Aaron recently started a day program with Goodwill/Easter Seals five days a week and they are providing him with a one-on-one staff person three days a week. That is the brightest hope we have had for years. So YEA!

Aaron still has a great roommate and one loving caregiver who has been with them for over 7 years. YEA YEA!

And Tommy (Aaron’s brother) and his family are now living near us, so our family can get together more often. YEA YEA YEA!

That is three wins. As this year ends, those are the blessings I see and celebrate.

Dream plan for Aaron–2011:

Aaron will be happy. He will have people around him who love him. He will have choices and do interesting things. Have friends. He will be able to communicate when he wants/doesn’t want something. He will be safe.

Pretty basic. Nothing specific. But again, these are audacious goals.

So, maybe everything you and I do this year will not make much of a difference in the cosmic scheme of things. But using the Power of One, I can do something to make a difference in my son’s life.

In the example of Goodwill/ES, it was the Power of One times 4. Aaron’s Dad, me, our Support Coordinator, and the leadership of Goodwill/ES. We kept at it, and it happened.

The Power of One: For Community

Using the Power of One, I will continue my blog,ClimbingEveryMountain.com.
I will try to entertain, encourage and give information to grow a community that cares about adults with disabilities.

Thank you for being with me on this journey. It has been an amazing first six months for Climbing Every Mountain. Together we can build a better world and community–one person at a time.

Virtual Circles

Old Bronfenbrenner wouldn’t recognize his embedded systems, but in 2011 we are using the social media tools (blog, Twitter, Facebook) and reinventing his circles of love and support that will ripple out to touch the future. The people in the circles are not our next door neighbors, they might live on the other side of the world.

In 2011, is social media and technology the solution?

Chris Brogan (ChrisBrogan.com) is a social media guru who suggests the future is going to include websites, blogs, forums, videos and online communities which help us connect with like-minded folks to get the information and emotional support we need.

His new company, 501 Mission Place, is helping non-profits use social media and become more effective. Perhaps you know of a non-profit that could use some social media help.

But I wonder if it is too late for many traditional organizations.

Virtual communities are already replacing many of the antiquated national organizations which have huge overhead and an inability to help individuals.

Virtual training is replacing the large conferences, meetings and university classes. Webinars and online courses like Partners in Policymaking are the new “best practice.”

Do you use the traditional phone and agencies in your community, or do you search for people and information in the virtual world of Cable TV, iPods, www, Twitter, Facebook, YouTube and …?

Summary: In 2011, we can use our individual power, the Power of One, to make a difference for our children with disabilities. We can do it by advocating directly for the people we love, and we can do it by becoming part of a virtual community like Climbing Every Mountain or other online communities.

In 2011–We’re Number One!

I hope you will sign up (top left) to get notices of new posts. I hope you will add your voice and stories to the comments. I hope you will use the social media of Twitter and Facebook to invite others to join us. The way we are going to build a better world for vulnerable people is to join together. And I hope you have an amazing 2011.

Keep Climbing: Onward and Upward
All my best for a fantastic year of ones,

Mary

Use Your Power: Comments Please

How can you use the Power of One? Do you think social media can help? Do you recommend other blogs and/or virtual communities?

I’d love to read your comments and know what you are planning this year.

Hi Everyone,

On Thanksgiving, I wanted to thank each of you for being part of our Climbing Every Mountain community.

It’s been an exciting 4 months of meeting new friends and connecting with people who care about people with disabilities.

More people are subscribing to the “Get Notice of New Posts” in the upper left hand corner of the website. More people are retweeting and sharing the social media love.

Now, there are over sixty articles or posts, a couple hundred comments and visitors from over ten countries. Inch by inch….

I especially want to thank Alison Golden my blogging partner. She really is a Warrior Woman.

I’m hoping to get to know each of you better. We need a team effort to keep climbing our mountains. But we will make it.

But sometimes we need to live in the NOW.

The last couple posts have been about dreams for the future (click here), and rants about the past (click here).

So NOW: I want to ask each of you to concentrate on TODAY and the people who bring you joy.

Right Now! Just for today, we accept that everything is just the way it is supposed to be.

Sure, we can begin the climb up the mountain again tomorrow, but for today we can feel good about who we are and the people we love.

This might be considered heresy for an advocate: But there are many wonderful things we don’t need to change.

I am so thankful for my husband Tom, who even though he thinks there are only space aliens on the web, he still loves me. After 40 years he is still my best friend.

I also want to thank my wonderful children and family: Aaron, Tommy, Ana and Isabella–I hope I haven’t embarrassed you too much. You do give me amazing memories and stories and teach me what life is all about.

Gift: A Song about Autism

It is hard to always look at “the silver lining,” see “the sunny side” or “the glass half full.” So, on this Thanksgiving Day, give yourself a gift and “listen to the music.”

Through My Eyes is a song about what it feels like to have autism. I thought this was beautiful and hope you will too. Enjoy!

Happy Thanksgiving.

Keep Climbing: Onward and Upward
All my best, Mary

Dr. Lou Brown

What is a Life Space Analysis?

Most of us spend our lives trying to squeeze in just one more email, appointment, phone call or…. We dream of the day we can have nothing to do. But is that really what we want?

James Chartrand recently encouraged Freelance Writers to read the book 168 hours: You have more time than you think (click here) by Laura Vanderkam. This book is to help “normal,” busy people look at their day in 15 minute segments and find more time for their goals and quality of life.

Twenty-five years ago in 1984, Dr. Lou Brown et al. of the University of Wisconsin-Madison developed The “Life Space Analysis” which has similar exercises to the 168 hours book. Is this a coincidence?

When people ask me, “What’s the purpose of the lives of people with severe disabilities?” (Like why should we let them live and use up our resources?) I have many responses (depending on my mood and who they are…) but sometimes I will answer: “People with autism and severe disabilities can take the complicated out of life. We can see life’s secrets because they help us think about basic truths we don’t usually think about.”

I think this is the beauty of the “Life Space Analysis.” It makes us see what a person with autism’s life actually looks like.  It gets to normalization (click here) and core values:

     *  Is it important to know how each person spends their day?

     *  Is it important to have a circle of friends and variety of people in our lives?

     *  Is it important that people get to go into the community and are not in one room for 24 hours, 365 days a year?

     *  Does a person with severe intellectual disabilities, autism and/or other developmental disabilities know the difference?

Life Space Analysis

The Life Space Analysis evaluation tool looks at the 24 hours in the life of a person with autism and/or disabilities:

* What was the person doing every 15-30 minutes?

* Who else was with them?

* Where did this take place?

*  Does this schedule stay the same every day and weekend?

For more information on this topic read the transcript of a presentation by Dr. Brown (click here).

Over the years, this has been a useful evaluation tool for my son Aaron who has the label of autism and severe disabilities.

When I wanted to show exactly how my son Aaron’s day consists of mostly sitting on the couch, licking books, and repeating “You Okay?”, I’d get a consultant to conduct an ecological assessment using the Life Space Analysis. We’ve had some great consultants over the years: Alison Ford, Patrick Schwartz and Wade Hitzing, as well as some local folks.

School Environments

When Aaron was school age, the “what, where, who” was pretty normal: a licensed teacher had the responsibility for planning Aaron’s day around a curriculum and his IEP goals. There was a process, accountability, best practice standards and a qualified team to make things work.

There was the normal rhythm of the school environment: bus rides, classes, specials like gym, art, music. There was the lunchroom, students in the halls, lockers, homeroom, weight training, therapy, and vocational job training around the school and in the community….

We had an excellent functional curriculum that looked at Aaron’s domains (click here). There were also after-school activities like basketball games, track and cross-country….

There were meaningful activities that filled the day, there were people who knew Aaron over a long time and had expectations that he grow and learn, and there were many rooms–spaces in the school, home, community. When Aaron was in school, he was on no medications.

Lou Brown used to say, “The more rooms, the more people in a person’s life–the more interesting that life will be.”

Adult Environments

Last week when my husband Tom and I were taking the tours of possible adult day programs for Aaron. One of the things we instinctively looked for was the “who, what and where.” What were the number of rooms? The number of people? and, What was happening in each of these environments? All the components of the Life Space Analysis.

Our “Life Space Analysis”

We went through several places, but here is the last center we visited:

The woman giving our tour had worked with Aaron 10 years ago when he was in transition from High School. She was a trained teacher and job coach. It was a vocational job and Aaron had a great experience. We were thrilled this woman might be back in Aaron’s life. She would know what he was like before he started to lose his skills and regress. Maybe she would be our ticket to getting Aaron a day filled with meaningful activities and people who cared about him?

Spaces-Rooms

The staff in this large center was especially proud of their “sensory room” where four people were watching a large 3-D movie on a big screen.

There were other rooms: a fenced “outdoor area,” an “art room” where they made and sold ceramic ornaments. There was a “cooking room” with kitchen appliances.

There was a large multi-purpose activity room where they had a party the day before.

We were told every day 6 vans took people out into the community in small groups to swimming, the Y, the park, shopping…. That sounded pretty good.

Aaron in this Environment

Tom and I were trying to imagine what this environment would mean for our son Aaron, who is 35 and has the label of autism. What did our Life Space Analysis tell us?

For over an hour, we visited the different rooms in the center, but there were only staff people in all these areas. Which struck us as odd.

All the “clients” (8-10 people with disabilities) were clustered in each of the 4 day “classrooms.” So around 40 or so people were there that day, all in those 4 rooms and the rest of the building was basically empty.

We only went in one of the classes, but we saw adults making halloween pumpkins–just like every pre-school in the country. NOT age-appropriate.

Most people were just sitting at the table doing nothing. One girl was talking in such a high pitch voice, it hurt your ears. This was a concern.

What would Aaron’s day look like?

When we asked what Aaron’s day would look like, we found out only the most capable people, who could be semi-independent, were allowed to go the the art and outdoor areas because they needed little supervision.

People like Aaron would only go to the art room… once in a while. But they couldn’t make any promises.

If Aaron was interested in going swimming at the Y, he might get to do it one time a month. But they couldn’t make any promises.

He would get to go to the sensory room with his group, and they had some music instruments that might be interesting to Aaron, but many of the other people liked the quiet and watching movies on the big movie screen. So again, they couldn’t make any promises.

There were also two empty rooms at the center. They were thinking of developing them when they got the funds for new furniture: “Maybe a place for people to come and eat lunch, maybe a microwave where they could fix their own lunches.” But, no promises.

In summary:

All the advances of the last 35 years, everything we have learned about people with autism and severe disabilities in special education programs and the research of best practice is not being used.

Aaron, unless some miracle happens, will continue to lose the precious skills we have all worked so hard to create.

The staff does not have the training or resources to be able to replicate the school programs Aaron and the other “clients” experienced. They could go and see these programs in action. Aaron’s High School teacher has repeatedly invited Aaron’s staff to visit and the school is only a couple miles away.

Tom and I both concluded this particular program was not going to work for Aaron.

We talked about just bringing Aaron home, me volunteering every day in the center (but they wouldn’t listen to me if I was there). So, what to do?

Dejectedly, we called our care coordinator to schedule another visit to yet another center… and then good news.

The care coordinator talked to the director of another program where Aaron would receive a one-on-one staff person for 3 days a week. A Reprieve. A bit of Hope.

If you are concerned about your child’s, or your own quality of life, look at the activities, people, and rooms in your lives. Maybe the ecological assessment, Life Space Analysis would help.

Speak Your Mind: Please leave your ideas in the comments.

Do you think the Life Space Analysis tool would be useful for people with autism and/or developmental disabilites?

Would it (or the 168 hours book) be useful for your own life?

Can you see the difference between having a life with too much to do, contrasted with a life with days and days of nothing to do?

Can we just sit and watch our children lose skills and deteriorate as adults?

Can we be satisfied with our own lives if we just sit and do nothing?

Keep Climbing: Onward and Upward

All my best,

Mary

Brown, L., Shiraga, B., York, J., Zanella, K. & Rogan, P. (1984). A Life Space Analysis Strategy for Students with Severe Intellectual Disabilities. L.Brown, M. Sweet, B. Shiraga, J. York, K. Zanella, P. Rogan & R. Loomis (Eds). Educational Programs for Students with Severe Handicaps, Vol XIV. Madison: MMSD.

And the difference is…

The Life Space Analysis for Aaron would show there is little for Aaron to do, few people to be with, no expectations that things could be better in his life and the life of people with severe disabilities who were in this center.

photo credit: nursing pins

Nursing and Caring during WWII

My mom became a nurse during WWII. One of her first assignments involved going into the homes of elderly people in the Washington, DC area. Many of these older Americans were by themselves because their adult children were serving in the war. These were regular patients she saw every week and she would give them their shots, medication, baths, change bandages… whatever they needed. Mom told stories about how her best medicine was often listening. They were scared, lonely and she would read the precious letters that came from faraway places and help them write back. One afternoon she was with an elderly couple as the military officers told them their son had been killed in action. She gave each person personal attention and dignity.

Her patients were personal. She knew them and their stories. She cared about them.

After each home visit, she and her companion (they traveled in twos) would take the bus or trolley cars back to the dorm where all the nurses lived. She had to wash, press and starch her uniform (this was before modern washers and dryers), she had to write her reports (this was before computers) and she had to make sure she was inside the dorm before 10 PM or she would be marked a fallen woman and unworthy to be a nurse.

After the war she married my dad and had five children in six years, with another child 4 years later–six children total. When the children were all school-age, she again became a part-time ER and Recovery Room nurse.

Nursing and Caring in 2010

Mom always loved hospitals and everything medical. Even now at 88 years old, she remembers the names and doses of each of her 15 medications. She tries to remember the nursing staff but there are too many of them.
This afternoon I stayed in her room while a steady stream of professionals did the prep work for her hip replacement surgery. They had her IV running; she was given preventative medicine for vomiting and acid reflux. She had one tube taped into her artery so during the surgery additional meds could be given without needle pricks. Everything was plastic, disposable, and sterile.

Everything was Impersonal

Each of the medical professionals seemed competent and efficient. They explained the procedures, they reassured her that her doctor was the best; they had amazing machines that beeped and whirled. But, even with me standing there, no one cared who mom was. She was the “hip replacement in room 424.”

Again, this was a state-of-the-art hospital with excellent nurses. Everyone was super nice and competent. On the bulletin board near her bed “Helen” was written in large green markers. Each of her nurses also signed the bulletin board so she would know the name of the staff person.

Games of Caring

In this game of “name that patient” and “ring-around-revolving staff” It did seem disrespectful that a twenty-something staff person would address her as “Helen” like they were best buds.

In Disability World, we have often dealt with staff whose job was to write a report and then give their expertise as to what was best for Aaron. Sometimes the prejudice and low expections of the professionals are dangerous to the person (click here). As an advocate, I’ve been in meetings when psychologists (they were the worst) would go over their whole report with recommendations for placements or goals and they never even met the person. They claimed to know the person better than the biased parents or teachers…. Advocates always recommend parents bring a picture of their child to the meeting. I know of one case where the psychologist wrote the report up on the wrong person.

Always the Advocate

Learning to be an advocate is useful in so many situations. I knew the research says people who are perceived as important, wealthy, or famous get better care than people who are anonymous, weak and ordinary.

As the two nurses maneuvered the hospital bed into the elevator with the soft music and the doors which opened in the front and back, I looked at my mom. Here was this frail 88 year old woman with her white hair mussed in bed head. Her skin kind of draped loosely around her eyes, mouth and neck. She insisted on putting on her lipstick before she went, so her bright red lips were in contrast to her pale waxy complexion.

She was just another old person to these nurses. She didn’t have a story.

Going from Nurse to Patient to Nurse

On the elevator ride down to surgery, I told the nurses about her history. Suddenly mom was not a nobody. She became a real person—more than just the patient they were fitting into the schedule, the last surgery of the day, the hip-replacement in room 424.

In the elevator ride down to surgery, I shared some of mom’s stories about the changes in nursing, hospitals and medicine. We talked about the old days when mom wore starched white uniforms and hats–not permanent press colorful smocks and gym shoes with disposable covers. Think about it, in the fifties the hospitals were not air-conditioned (it was 85 degrees today) and many hospitals didn’t even have elevators. I told them how she visited the sick and elderly in their homes.

We were in the elevator for probably 4 minutes. That was all it took.

The Human Story Makes the Difference

Now, the old lady “Helen” was a nurse who worked when nurses really knew their patients. She was not a stranger; she was a nurse–one of them. She was a pioneer who paved the way for these two women pushing her bed. She was also a future THEM in 50 years when their hair would be mussed with bed-head and they would need caring nurses.

When we reached the doors to the surgery department, I kissed my mom on her red lipstick. This time when the nurse said, “Helen, we’ll take good care of you.” I smiled and knew “Helen” was now a real person and would get both dignity and good care.

Share YOUR Story:

Come on, I’m sure you have some comment about hospitals, medical or school professionals and caring?????

Keep Climbing: Onward and Upward,
All the best,

Mary

Day 21 of our Chris Brogan’s Every-Day-For-30-Days Blogging Challenge Follow us on Twitter #CB30BC

Alison Golden of The Secret Life of a Warrior Woman is my partner in this challenge: (click here to check out her new post.)

Playing in the leaves for the first time

Last year on 09-09-09 it was my 60th birthday.

In the picture above, you see Baby Isabella playing in the leaves for the first time–another miracle from last year. There is nothing more magical than watching her learn and explore new things. She swings and colors and plays on the piano…and, drops to the floor when she doesn’t want to do something (hey, that’s part of growing up too). Today I saw her knock on the door and I swear I heard her say, “Who’s There?”

But my absolute favorite moment with Isabella is when I walk into the room and she squeals and runs into my arms. It just doesn’t get any better than that.

Today on 10-10-10 I’m wishing you all a year filled with blessings.

I am so thankful to each of you for helping me launch this blog–It is now three months old and at this time last year was just a dream.

For this coming year, I wish each of you a loved one who squeals and runs into your arms.

Let’s see what wonders there will be by 11-11-11 next year?

Comments: Time to Brag, Dream and Put it in writing:

What are your dreams and goals to be completed by 11-11-11? What have you completed since 09-09-09?
Share a little about yourself and maybe we can help each other reach those dreams.

Day 18 of our Chris Brogan’s Every-Day-For-30-Days Blogging Challenge Follow us on Twitter #CB30BC
Alison Golden of The Secret Life of a Warrior Woman is my partner in this challenge: (click here to check out her new post.)

photo credit: U.S. Army Garrison – Miami

So‐called “friendly fire”, sometimes termed fratricide or amicicide, is officially defined by the U.S. Army as “the employment of friendly weapons … which results in unforeseen and unintentional death or injury to friendly personnel.” (Wikipedia)

Yesterday I was sitting at my computer when the security system began flashing red alerts saying it found 2 then 6 then 15 viruses which ranged from strong to critical. I was just sitting there watching helplessly. Immediately I turned the machine off and called for help. Thankfully 24 hours later, I’m typing from another computer and a good friend is taking precautions so this never happens again. Turns out the virus attack was so nasty it even dismantled my computer’s security system. Some unknown enemy snuck up and damaged something that was important to me. No one was hurt, my friend thinks he can fix it. So, C’est la vie!

I can handle those kinds of anonymous attacks. What happened next was more upsetting.

When my computer life resumed, I checked my email messages. For the second time in one day, I felt I had been caught in an ambush. But this time the attack was coming from people I know and care about. People who are supposed to be helping us–friendly fire.

(edited to protect confidentiality)

From: Aaron’s Support Coordinator
Sent: Wednesday, October 06, 2010 1:53 PM
To: Mary Ulrich
Subject: Aaron’s house

Hello Mary,

This is the e-mail that you have been dreading. For years, Support Coordinators have put out e-mails about potential roommate matches, visits, etc.

Previously I have been able to say that Aaron and (his roommate) are not out of their (funding) ranges and guardians/parents are not interested in roommates, and they stop contacting me.

Apparently, per direction by (the director), we are in a financial place that we can no longer have the luxury of choosing not to move forward with roommate visits. I was told that I am to contact you and (Aaron’s roommate’s) guardian to set up a roommate visit for (his house). We have someone receiving a waiver and he needs a home in which to live. (Aaron’s house) is definitely considered a 3 or 4 bedroom home, so we have to consider (it) as an option.

Please contact me or (the director) with any questions or concerns that you may have.
Thanks, Mary.

Signed (Support Coordinator)

An Unsteady Peace

When my computer gets fixed, I’ll see if I can find the letters and presentation Tom and I made to the county board about this issue two years ago. Tom and I thought this was settled. Aaron has lived in his own place for over ten years. I worked for a year to make sure Aaron and his roommate had the funding levels in their Medicaid Waivers to sustain the staff they needed. I worked for another year to figure out the HUD Rent Subsidy Program. (On both, I’m proud to say Aaron was one of the first in Ohio.) The fact my computer is inaccessible and I can’t even retrieve my previous correspondence makes me feel even more vulnerable. Last time we explained in great detail how adding additional roommates “which results in unforeseen and unintentional death or injury to friendly personnel” –okay, death is too harsh, but the “unintentional injury” and a diminished quality of life would surely apply. The one staff person who has been with us for 7 years says she will quit the minute another “client” is added to the house. The complications go on and on.

Aaron’s residential situation is being held together with scotch tape and spit as it is. To add one or two more people to his living situation is a disaster in the making (everyone agrees with this).

Amicicide

At least, our advocacy efforts last time delayed it a year or so. But now it is back—in our face. It hurts deeply that we cannot trust the people in positions of power. Their best interests are not the same as ours. We have worked with the county board for probably 25 years. I was on the board for 6 years and have friends there. Our support coordinator is a dear friend who has seen us through many disasters in the past 15 years we have worked with her. The Director is also a dear friend. So these are good people who I love. I appreciate their budget issues.

But, if I don’t speak up for Aaron’s interests who will? Plus, Aaron’s roommate’s parents are 87 years old and his mother has intense medical issues. Plus, this must have happened pretty quickly because we saw our Support Coordinator at a meeting on Monday and she didn’t say anything. I’m not sure what happened in those two days since. Plus, plus, plus….

Battle Plans

I haven’t decided the exact plan of action. This is such a surprise attack I’ll have to get over my shock, disappointment and anger before I can take a step forward. But it’s time to put the battle fatiques back on and geer up for battle. Again.

Last time when we were attacked, we resolved it. This time the enemy (our friends) know our game plan and strategy.

Further, when Tom and I are in the nursing home and unable to stop them, we know the assault will again happen. So do we just accept the inevitable? Is this a battle we cannot win?

In Disability Scoop there was an article titled: Autism Moms Have Stress Similar to Combat Soldiers (click here). “Mothers of adolescents and adults with autism experience chronic stress comparable to combat soldiers…” The author’s research points out that when physical hormone levels and chronic stress levels were measured, they were similar to those of combat soldiers.

No surprise there. And I would give this email as proof of the reasons. Surprise Attacks, Friendly Fire… It’s like this violated our peace treaty. A bomb that dropped from the sky during the night. And, from those we trusted and depend upon to look out for Aaron’s best interests. From those in the “helping profession.”

Thoughts?

Do you have an extra bedroom in your house? There are lots of homeless people around. Since people don’t want to pay more taxes, what if we just choose someone to live in your house?

More to come:
Keep Climbing: Onward and Upward.

All my best,

Mary

Day 16 of our Chris Brogan’s Every-Day-For-30-Days Blogging Challenge Follow us on Twitter #CB30BC
Alison Golden of The Secret Life of a Warrior Woman is my partner in this challenge: (click here to check out her new post.)