Saturday, November 26, 2016

"Get a Life!"

                                  

I was on the ground floor of our state Capitol, and it was about mid-way through our daily SingAlong over the noon hour.  I am not there every day, but someone has been  there every single weekday for well over five years now, making a stand "until Wisconsin gets better!"  We always welcome visitors, and encourage folks to join the singing, come into the center to take pictures of the beautiful high ceiling, or just pass through as they take a shortcut through the building.  It is, after all, the "people's house" and we are proud and happy to share the space each day.   More about my participation here

The man approached me, as most of them do, without really making eye contact, and I smiled as I usually do, to make him feel welcome.  Without looking up, he spit out those words we have heard all too often: "Get a life!" --- and from that moment on I totally lost my concentration and had trouble remembering the lyrics for the songs I have been singing since spring of 2011, songs I sing in the shower, songs that go through my head day and night, awake or asleep.  The words weren't coming.  I was way too preoccupied.

Oh, if you only knew!  Stop for a minute and let me tell you about my life. It is full beyond belief and I feel blessed in ways I never could have imagined.

I could tell you about my family - wonderful husband of over 50 years, grown children and foster children, who provide us with awesome grandchildren, ranging from toddlers to those in their 20's, starting out in exciting careers and living now on their own.  Soon a whole new generation of "immediate family" will be a significant part of our lives.  There is, of course, also an extended family of siblings, in-laws, cousins and others. Some we see on a regular basis, and others only occasionally, but all are special to us and provide a deep richness to our lives.

I could tell you about my friends - some I have known for over 60 years, some I know only through my many contacts on social media.  We have moved several times in our married life and always do what we can to maintain connections with the friends we have made in each location.  Our holiday mailing list has always been a long one and we love to hear from those we don't see on a regular basis.

I belong to a book club, we participate in a Senior Learning program, we travel for both fun and education,  we travel to visit family and friends, and we travel to watch our grandchildren participate in all their various activities.  Are you a sports fan?  We have watched grandsons play football at both Northwestern and Ohio State.  Should I tell you about our never-ending loyalty to the Wisconsin Badgers?  We love our life in downtown Madison within walking distance of the campus we love, the Kohl Center, Camp Randall stadium and of course Capitol Square.  Farmers Market, State Street, sporting events, culture, restaurants, educational opportunities and a newly renovated library - we have it all!

Do you have just a little more time?  I absolutely love telling people what I am doing in my retirement. Yes, I have become more aware politically (now there is an understatement!) but it's not just that.  I am a retired special educator with an intense interest in the field of autism and have established my own business as an independent contractor, now helping mostly adults who are unable to speak to find their voice through typing.  There are so many of these amazing people, and they all have a lot to say.  I won't bore you with the details, but I have written more extensively about this on my blog.  You might want to check out this posting in particular:  "Why I Do What I Do."

Sorry for being so defensive about this.  I understand that you might have made a quick judgment about the group you saw singing that day.  I can guarantee you that every single one of the participants has an interesting story to tell.  Next time, plan to stay a little while and get to know us.  Maybe even sing along.

As we say in one of my favorite songs, "We are a gentle, loving people, and we are singing for our lives."
All are welcome.

Thursday, November 24, 2016

Guest Blog on Thanksgiving Day

This one is too good not to share.  Very personal reflections on a life lived well, and lots of lessons learned.  From my dear husband Paul, who makes it all possible - and worthwhile.


I’m not sure if it is Thanksgiving, or the election, or turning 80 years old, but I’m feeling like writing my feelings. (This is not at all normal for someone with 100% German genetics).
I feel good!  I feel blessed!

I feel the need to affirm the beauty and rewards of how DIVERSITY has enriched my life.  I was born and raised in a “lily white” community (Manitowoc County) that demanded residents to register any black persons who wished to stay overnight and whose childhood chants ridiculed the Irish.   I cannot remember that race was ever a topic with my parents or relatives.  I did know that Catholics were the only ones who would get to heaven (WRONG), that homosexuals were bad (WRONG), and that Case tractors and Chrysler products were better than the others! (That may have been wrong too?)   Valders  (Vikings) High School alerted me to the diversity of Norwegians.

Then came the University of Wisconsin and Madison.   The first night, a street person tried to get a dime from me.  No way!  (Could he tell I was from the farm?)   Daily, I was at the dinner table with black people and my botany lab partner dressed differently and had a red spot in the middle of her forehead!  Some of my acquaintances disliked the Jewish kids from the East Coast.   During spring break of my junior year, I spent a week in New Orleans.  I sat in a “BLACKS ONLY’ seat on the bus (because there was more room and I didn’t know it made that much difference . . . . found out  DIFFERENT!) and watched a fight break out when a black woman tried to take her son into a “WHITES ONLY” bathroom at a bus stop,   My teammate on the dairy cattle judging team was from Argentina.  His dad offered me a job when I graduated, buying dairy cattle for South America.  (That was stretching too far for me).
In 1959 I did my military duty and I trained and bunked with some black fellow officers.
Then I became a teacher in “lily white” Greenfield on the south side of Milwaukee.  One of my teacher friends talked me into joining Father Groppe and marching with the civil rights protesters into the Polish south side to promote integration.  That was a good step --- Thanks Jim Hondel.  

So that is some background.

In 1965 I married a CITY girl!  I guess I was ready for a little stretch.  Actually, she was the one that needed to be open to my farm boy ways --- and she was!  She said “yes” in spite of the fact that I told her I voted for Barry Goldwater, and she was pregnant for the next few years, so she was too busy to object.  Then she mothered our four children and slowly educated me to the need to be more open and less rigid. Who says people can’t change???

In 1973 we bought a large old farm house with 40 acres in Plymouth, and we also agreed to have more children --- just not our own.  We became the “Brandl Bunch.”   Twenty years as a licensed foster home and 11 foster  children later,  plus 2 exchange teachers (one from Mexico and one from Japan) a foreign exchange student from Switzerland,  and a variety of short term live-in guests  taught me a lot about diversity and its value to all.  

The experiences were themselves very diverse.  I remember the high school girl I brought home one night because she was afraid to go home after school (her father had found out she was pregnant and held a loaded gun to her head the night before).  Social Services wanted to hide her until she was safe.   Others children stayed for years.  I believe 13 years was the longest.  Certainly the outcomes of our parenting efforts were also very different.   I felt rewarded by the positive outcomes and saddened when some children were sent back home to unprepared parents.   I learned from each experience and I am still learning, especially from those who struggle with anxiety and depression and disability.

So how do I feel now?    I feel no hatred, or anxiety.  I feel lucky and thankful and….REWARDED!
I want to do what I can to affirm the beauty and rewards of a diverse society and express how it has enriched me.  With four wonderful children of our own and these 10 grandchildren, plus the foster children and these grandchildren, I have been blessed.  I now have grandchildren whose parents are Swiss, Russian, Tunisian, Indian, and African!   I love those who are married, single, divorced, transgender, Democrat and Republican.   When I think about my foreign friends, like Anita, Markus and Svenja, I do feel embarrassed by this last election.

I am going to try to be kinder, more caring, respectful, generous, thoughtful, and understanding than ever before in the time I have left!  LOVE is the answer!








Saturday, August 6, 2016

Old Dogs, New Tricks, Another Lesson Learned (I hope)

As I sit here at my computer, I find myself surrounded with a graveyard of techie stuff that isn't working, or hasn't been properly activated, or maybe was purchased by mistake and never returned.  The most recent tech crisis has focused on brand new iPhones I ordered for both my dear hubby and myself.  After about 10 years with our old mobile devices, I thought we were due for an upgrade.

Note to self:  Anyone who can't find the time to even make an appointment with the wonderful folks at the Genius Bar should probably seriously consider revamping their life!

Eagerly I jumped right in, never thinking that it might be wise to do this one phone at a time.  Attempting to activate both phones at the same time caused us to be hopelessly disconnected from the world of texting and what used to be called "long distance" phone calls or messages, once the old phones were declared "dead" and the new ones hadn't yet been brought to life.  It was a strange feeling.  Scary to think how dependent on these devices we have become!

And then there is the printer that isn't working, the projector that was such a good buy, but is useless because I haven't found the right cables to connect it to my laptop.  And on and on; you probably get the picture.

Lesson learned is this:  We all learn things in small increments, we all need lots of help along the way, we move forward with fits and starts, and sometimes we get stuck.  Sometimes we even say we have reached our limit and prefer to stay right where we are.  I have friends, after all, who refuse to enter the world of Facebook, Twitter, Pinterest and the rest.  I even have a few die-hard friends who have never used a computer.  They are all good people and have decided that books, newspapers, TV, radio, maybe even face-to-face conversation work just fine for them.

So it goes for all those people I encounter who still think that a person who is unable to speak, or who talks but doesn't make much sense, is probably "intellectually disabled" and incapable of learning anything beyond basic living skills.  Or those who observe the process of supported typing (Facilitated Communication or Rapid Prompting Method, or any variation) and say this can't be real.  Or those who observe the process, listen to my stories and the stories of others, and don't change the way they interact with these individuals.  They aren't there yet; they need a Genius Bar to walk them ever so gently toward a new way of thinking.

And I need to be patient, without losing hope.  I need to hang in there and keep telling my stories.  I find new inspiration every single day as I support people in their communication.  But most of all, they really do want people to believe they are for real.  Seems to me we have all waited long enough to be taken seriously.

Wednesday, June 8, 2016

Moving Mountains

There is an old Chinese story about a man who wanted to move a mountain.Well, actually he wanted TWO mountains moved to improve the quality of his life.  You can read the longer version here but the essence is summed up in this saying attributed to Confucius:   "The man who moves a mountain begins by carrying away small stones.” 

The man was old, somewhere around 90, and folks laughed at his silly plan, but he persisted - and that is the basic lesson: Persistence will be rewarded.  Someday.  But maybe not in your lifetime.  Persist anyhow. 

I have been chipping away at my personal mountain for almost 25 years now, enlisting all the help I can find along the way, feeling weary at times, but determined to do all I can to eliminate the opposition to what has been by far the most significant reality of my professional life. 

Back in 1992, when I first learned about - and tried - Facilitated Communication, I joined a rapidly growing group of enthusiastic parents and professionals who thought the field of disabilities had been changed forever. Long-standing beliefs about folks who have limited (or no) oral speech were challenged as never before, and around the world silent voices were beginning to be heard - thanks to an exciting new approach that involved providing access to spelling or typing what they might be thinking.

It is painful for me to go back any farther than that, but the truth is that we - parents and professionals alike - hadn't given these individuals much credit.  We actually thought they might not be capable of learning.  We acted as though a person who is unable to talk, or pick up a pen and write, is probably not doing much in the way of thinking either. We thought that an IQ score of 30, for instance, or a mental age of 24 months, actually told us something about a person's ability to learn.  We were so very wrong.

I have been chipping away at mountains ever since, telling my stories to anyone willing to listen, writing a book about my early experiences (SEE US SMART!), and doing all I can to speak for those unable to speak for themselves who have begged me to share their good news.  Some of these amazing folks all across the globe have become independent at typing, many give presentations at conferences, and some have authored books or produced videos that tell their personal stories.

And yet, the mountains stand tall.

A recent article in Slate magazine was particularly vicious (and thorough!) in attacking Facilitated Communication (click here). Does it pay to write a rebuttal?  Do we just dig in our heels and carry on?

I knew from the beginning that I was not alone. There were professionals out there trying to get funding for research projects to better understand and support what we were experiencing.  The funding wasn't there for the most part, and for those fortunate enough to fund a project on their own, the respected journals had no interest in publishing a study that was supportive of Facilitated Communication.  A wise and respected leader in the field of autism tried to reassure us that the success stories would ultimately convince people that FC is both valid and helpful.  But if you enter the term "Facilitated Communication" into a Google search, you will get a sense of just how formidable our mountains are.

Wikipedia calls FC "a discredited technique."  The Skeptic's Dictionary refers to the method as a technique that "allegedly allows" communication, boldly stating that, "Controlled tests demonstrate conclusively that the only one doing the communication is the facilitator."  There are frequent references to the PBS Frontline show or the 20/20 segment which aired back in 1993 or so.  Terms such as "pseudoscience" and "controversy" show up frequently, as part of the description of "the fad that will not die."  Can you blame families or school systems if they shy away from even giving the method a try?

Our mountain consists of doubt, skepticism, warnings of danger, and outright rejection.  We keep our shovels ever ready, trying to get the word out that a simple letter board truly can change a person's life. We enlist the help of all who have experienced the pull of a silent person's hand toward a keyboard to spell out for the first time ever a messages such as, "tell mom and dad I love them."  

It gets discouraging. The mountain seems to be winning.  I have personally accepted that the paradigm shift I dream about might not happen until after I am gone.  And in the meantime, I am privileged to spend time regularly with some very amazing people who have found a voice and have a lot to say!  Together we keep chipping away.

Sunday, September 13, 2015

Thinking about Self-Determination

One of my typing friends has been "stuck" on the topic of independence.  He repeatedly requests that I help him be more independent.  Usually this leads me to offering a few practice exercises in typing simple words or phrases with less and less physical support on my part.  And almost invariably, he begins to resist after just a few minutes. Just for the record, I am using one particular typer as an example here, but the pattern happens all too often with others as well.  They ALL want to be "independent" but don't seem to want to work at it.   So I make the assumption that we are somehow failing to communicate, and begin to ask for clarification.  "If it isn't typing that you have in mind, what is it?"  Answers vary.  "HELP ME LIVE ON MY OWN," "GET ME OUT OF MY AUTISM," "FIND ME A NEW BODY," etc.

With this particular friend, a man in his 30's who does not speak at all and needs almost total support in every aspect of daily living, I pushed for even more.  And what it seems to come down to is that he understands he will always need the help of others,  but he wants these helpers to respect his inner intelligence, and give him more options in his life, more personal control over all matters large and small.

We were talking at the time about simple things like more choices for what to eat for breakfast (NOT SO MANY PANCAKES) and what to do with his time (I LIKE TO DO DIFFERENT THINGS), but there are so many other matters of concern and  so many others like him whose desires aren't being recognized or respected.

I am thinking of another young man I know, still in school, and also using typing as his primary means of communication.  After establishing himself as an honor student using a combination of Facilitated Communication and Rapid Prompting Method, he was accepted as a high school senior to take a college level course through a neighboring college.  At the last minute, however, the powers that be decided he would not be eligible because he uses a method of communication that is not "evidence-based."  He is not the only young person I know who has expressed a strong desire to get an education, only to be turned down once someone up the chain of command realizes that this unique method of sharing knowledge (when you can't speak or write) is being used.

Moving from choices about what to eat to what to do for free-time activities to what to do after leaving high school, things can get even more critical to true self-determination.  Two major stories in the news right now  bring this matter front and center.

In the state of Colorado, Sharisa Kochmeister has been removed from her home and is living in the care of someone other than her family.  Hers is a long story and I won't even try to tell it here.  But essentially what has happened is that she now finds herself with no access to the only means of communication that has worked for her, and is unable to let people know what SHE wants when it comes to the all-important decision of where (and with whom) to live. Read more here:   http://autismwomensnetwork.org/sharisa-joy-kochmeister-give-her-back-the-right-to-communcate/

In the state of New Jersey, a young man with Cerebral Palsy has likewise been denied access to his chosen means of communication while a jury meets to decide if his female facilitator took advantage of him and is in fact a sexual predator. This case has been going on for four years now, and he has not been given an opportunity to tell his side of the story, nor has he had a chance to express his wishes for his present, or future, life choices.  Does he not have the right to fall in love, to have an intimate relationship, to choose where (and with whom) he lives?  Most of all, does he not have the right to have access to a means of communication that works for him?  http://www.nj.com/essex/index.ssf/2015/08/controversial_technique_at_center_of_professors_se.html

When we make choices for others, whether it be cereal versus pancakes or where they will live; or we make judgments about whether they are capable of doing college work, or capable of falling in love, we are not presuming competence and are, in fact, sending a strong message either that they don't have preferences, or their preferences don't matter.  We are missing a perfect opportunity to show them that we recognize their value as a person, with feelings and desires just like everyone else.

If we fail to recognize and appreciate the inner value of the people we know who are unable to speak, we risk falling into a scenario reminiscent of this one in the movie "Awakenings"

Standing there, watching these human beings on the screen, unable to move or communicate, Dr. Sayer asks: “What’s it like to be them? What are they thinking?”
“They’re not.” The expert retorts, “The virus didn’t spare their higher faculties.”
Disturbed, Dr. Sayer challenges. “We know that for a fact?”
The expert’s response is once again direct and affirmative, but Dr. Sayer continues to challenge: “Because?”
To which the expert responds, devastatingly: “Because the alternative is unthinkable.

Sunday, August 9, 2015

They DO Grow Up!

After many years of teaching, mostly at the elementary level, I retired and found a second career that I love.  I am blessed to be currently working on a very part-time basis, with lots of needed flexibility, as an independent provider of services.  My "services" mainly involve supporting people who type to communicate and helping others learn to support them in their typing.  I have had only one elementary school age client, and the rest are all older teens or adults.  In fact, one of my newest clients is 59 years old, has only recently been introduced to typing after a lifetime of silence - and is loving her new-found "voice!"

In the process of making this transition in my personal and professional life, I continue to learn valuable lessons that I am all too happy to share.  As always, I hope what I have to say might be helpful to others. and especially helpful to the many adults who have been misunderstood, or even mistreated, all their lives because the decision makers in their lives failed to see the person inside.

Recently I attended a social event for folks with disabilities who are served in day programs in our community.  As I looked around, I tried to picture the young kids who had been my students years ago.  What do THEY look like now?  What types of programs are they in?  Are they involved in their communities?  Do they have a means of communication?  Does someone in their life know they are intelligent, with thoughts and feelings just like the rest of us?

For too long now, we have tended to think about autism as a condition of childhood, probably because it is a label usually given to children,  often between the ages of three and five.  Schools didn't really start admitting these students until sometime after the Education for All Act was passed in the mid 1970's and the early incidence figure was about 1 in 10,000.  Most recently that figure has grown to 1 in 68 of all children in the U.S. - and for the most part, around the world.

Individuals with Cerebral Palsy, Down Syndrome and other conditions also tend to have difficulty with communication, and many share a similar fate of being considered unable to learn/think/feel like their non-disabled peers (or NT's - for Neurotypicals).  Something else they have in common is they all grow up.

I was in the public school system when children with autism first started trickling in, and each school that welcomed a non-speaking child with significant behavioral challenges struggled mightily to figure out what to do.  These were not like the other kids with "special needs;"  their needs seemed to be extraordinarily special!  To read about (and maybe have a laugh or two as you do) my early years, check out Carla's story.

I remember many meetings where professionals sat around big tables and tried to cobble together a program that would meet the needs of one individual with "severe" autism, sometimes but not always involving those who knew that child best - the parents.  These were the GOOD schools, who had a school psychologist, speech therapist, occupational therapist, physical therapist, special educator and paraprofessionals who cared and wanted to do what was best, to provide whatever level of support each particular student' might need.  Other schools stumbled along, trying to make that extra-special student fit into an existing model.  Just take a guess as to how successful those programs were!

Now I see a tsunami of extra-special young people leaving the public schools and entering the vast wilderness of adult services.  It is unfortunately happening at a most inopportune time, as budgets are cut and services are strained to the max.  It might seem to be helpful that many people are seeking employment and may be willing to give a relatively low-paying job a try.  But I see this as a huge part of the problems that arise.

The existing models of adult services aren't going to meet the needs of these folks.  Sure they need food, shelter, safety and other basics.  But we fail them terribly when we treat them either as nursing home patients in need of care, or children in need of training.  They are competent adults, with thoughts and feelings just like the rest of us, and they need and deserve our respect as we work with them to continue their progress towards the greatest level of community inclusion, independent living and intellectual stimulation possible.

We have moved away from putting people into institutions - a huge step forward, and one that claims to be economically sound as well.  But life in the community requires more than sharing an apartment or house with a roommate or two and paid staff, around the clock if needed.  There must be job opportunities, recreational activities, social interactions, meaningful learning options, and most of all, direct care staff who understand how important all of these services are.

When we hire workers at close to minimum wage, with few or no benefits. and ask only that they pass a background check and are willing to give this a try as a career, we are asking for trouble.  The good ones won't stay and the others are totally unprepared for what is being asked of them.  Workers mean well, and try their best, but often they have no background in the field of disabilities, are given little or no training, and are expected to provide support to a very needy person who is unable to speak, with virtually no oversight.  For hours on end, they are the one in charge, making critical decisions as to how a particular situation should be handled, and struggling to know how to interact with a person who may need total care and has no way to communicate.

Sometimes I am called in to help staff learn about Facilitated Communication so they might be able to interact in a more meaningful way with their clients.  I welcome these opportunities, but all too often realize I have to back way up and share basic information about neurological differences, motor  problems, sensory issues, and the unimaginable frustration of being unable to speak - leading to a lifetime of being underestimated and misunderstood. Communication is a critical piece of the puzzle, but every piece is critical when the needs are so great.

We need a new model; the people we serve deserve better.  And if we can find a way to meet their needs throughout their lifetime, we will all be in a better place.  It is worth the effort.

Sunday, April 26, 2015

"Attitudes Famously Hurt"

The overall theme of this blog is lessons learned - as a teacher, mother, and grandmother - and now shared in hopes of helping someone else.  It takes a certain amount of humility to admit that I had much to learn and have made many mistakes during the learning process.  Maybe with a little luck I can prevent a mistake or two in the life of a reader every now and then.

One of the most important lessons learned is that we never really stop learning.  Thinking I know it all or have nothing more to learn would be the height of arrogance.  Luckily, my life continues to be filled with some excellent teachers, who are always ready to point out to me when something like complacency (or even arrogance) might start to creep in.

In a recent session with a young man who types to communicate, I needed a jolt to alert me to a mistake I might have missed entirely.  I hope I will never fall into this trap again, and I hope by sharing that I can help others to think carefully if they find themselves in a similar situation.

This particular session was heading in a different direction than our usual visits. Usually we talked pleasantly about hopes of typing independently, dreams of going on to college or living on his own.  This time, Mom was present and we both observed him becoming increasingly loud, agitated and visibly upset.  The confusion and errors in the typed transcript below are not at all typical for this particular guy  - who carefully watches every word as it appears on the screen and isn't satisfied until every single typo is repaired and the message is clear.  This time, emotions were getting in the way.

"Too many bad demons. Really I think my beach. Just help me. yes I know. Really I know I handled it every time. Yes, my demons. They get me every time. I have really no command over them. Really this is hard to explain. Try to that just need help. Try to help me get it out. Understand my past is full of bad memories. Those bad things are over. Yes, I know you are sorry. Yes, I hated my school. Understand I liked my students.  Understand I know the teached spelling but really that was not enough for me. tell me more and I can answer. Yes, I really think people mistreated us."

His mom and I, mostly without realizing it, became tense and quiet as we waited for what might come next.

"They thought we were retards."


And with that, we both exhaled and relaxed just a bit.  BIG mistake!  Louder and more forcefully than ever, he let us know something I will never, ever forget.

"Understand that being meant to be retarded is just as bad. Yes. Verbally abusive. Yes, yes. Attitudes famously hurt."

We were thinking the worst.  Or, more precisely, we thought we knew what "the worst" might be.  We were wrong.  Verbal abuse, or unspoken attitudes that relegate a non-speaking student to a category such as "cognitively disabled" - the more gentle label we have started using in our schools - hurts just as much as the physical or sexual abuse we are all so afraid of.  


I should have known better. Virtually every single child or adult I have supported in their early days of typing has begged me to tell everyone that they are intelligent.  For all of their lives they have been underestimated and misunderstood.  It really IS abuse of the worst kind and it has lifelong effects.  

It doesn't matter what their level of intelligence might be, or whether we ever figure out a way to measure such a thing.  Each and every person deserves to be treated with respect.  In all cases - NO exceptions! - we must presume competence.