Tuesday, September 19, 2017

Try a Different Way

Some kids are harder to reach than others.  And many of the old tricks we've learned  might not work.  Sometimes you just have to throw the rules of the game out the window and try a different way.

L is one of those, although he is no longer a kid.  He's an adult now, somewhere in his early 20's, like so many of the young people who are my teachers these days.  I have made many, many mistakes over the years, but thanks to some very special earlier teachers, I think I got it right this time.

I meet with L about once a week for an hour, with the purpose of helping him find a voice through typing.  We struggle almost every time - he can't (or won't) sit; he chews on just about anything; he resists most of my attempts to interest him in the iPad; and many times he just lies on the floor and falls asleep. He has no spoken language, and has had virtually no academic instruction during his years of special education.

But in those moments before sleep, while his eyes might be closed and an arm flung over his head, I know he is aware of my presence and I know he is listening as I read to him from one of the many, many stories of people just like him who have learned to type (using either Facilitated Communication or Rapid Prompting Method) and then dared to tell their story.

I also know that when he is feeling safe and able to focus, he has typed some rather amazing thoughts.  I wait patiently each time we meet for things to be just right, so I can learn more from him and about him.

On this particular day, L was unusually interested in a plastic bin of magnetic alphabet letters, so we started with that, both of us happily seated at a table in a quiet, comfortable room with few other distractions.   He carefully fingered each letter he picked up, turning it around in his hand (NOT putting it in his mouth!) and then setting it down.  I quietly spelled out a greeting using his name and pointed it out to him - no visible sign of interest on his part.  I talked a little about Louis Braille and the importance of touch to those who are blind.  Again, no sign of interest, and no sign of a pattern to his investigation of the letters.

Until I woke up and saw a very distinct line-up: ABCD sat there on the edge of the table just waiting for the next in line.  But I was immediately puzzled by his hesitation because there were several "E"s close by.  I was just about to say something when he changed from calm to his more usual state of agitation and he started flinging letters across the room.  When the table had been cleared and all letters were resting on the floor, L got up and headed to the floor himself; but he sat rather than lying down, so I calmly took the plastic bin and sat down next to him. I suggested we work together to pick them up and started the process myself by tossing a couple letters into the container.  With an ever-so-brief glance in my direction, L immediately started throwing letters to the opposite corner of the room, and wasn't satisfied until they were all in a new area of the floor.  At about this point, he added in some floor-pounding and loud yelling just for emphasis to be sure I was paying attention.  I was!

This time I waited until he was settled among the letters in their new location and sat myself down on a chair in close proximity, but without the plastic bin.  I waited a while and then stated in a calm, clear voice that I really didn't care if he ever picked up the letters.  In open defiance of  what just about every professional or parent I have ever known would suggest to me at that point ("There must be consequences;"  "He must pick up those letters before the session ends;" etc), I told L that what I really wanted was for him to help me understand why the letters are important to him and what the message is in the act of throwing them.    I made the assumption that something was making him mad and there might be something he wants people in his life to know.  Reaching for the iPad, I typed a sentence starter: I GET SO MAD BECAUSE. . . .   I used the voice output on the device to speak these words several times, and I waited.

It seemed to take forever, but was probably less than five minutes until he got up from the floor and sat on a chair.  I moved close to him, held out the iPad and extended my hand to provide support whenever he was ready.  He rested his hand in mine and finished the sentence . . . people think i dont know anything.

We finished our session on the iPad, with him eagerly giving me permission to share the story.  He left the room quietly with his staff worker for the day, and I picked up the letters with a smile in my heart.  Just minutes later, L entered the office area where I was sharing the story with two of his other workers and I let him know what we are discussing.  L's huge grin confirmed the message to all of us.

Yes, L knows much more than we might have ever guessed, and so do many, many other non-speaking individuals who have been underestimated and misunderstood all their lives.     Try a different way and you might begin to see what they've been trying so desperately to tell us all this time.

Thursday, August 31, 2017

Two Seniors in a Condo, Two Men and a Truck, Two Kids and a Dog

It's a tale of life changes, moving on, and family togetherness.  I will be totally honest and say that I wasn't paying attention at first, and was clearly the last one on board, but here we are - after 52 years of marriage, and as we move ever so gently into our later years, we have moved.  But it wasn't easy!

Sometime in spring, when I was busily involved with a post-retirement career I love (see many of my previous postings on this blog), and juggling that with trying to help my sister who lives alone, two hours away, and was having hip replacement surgery with serious complications to follow, my husband Paul starting thinking seriously about the next phase of our lives. 

For 13 years, we had lived in a downtown condo on the edge of a thriving college campus.  We both loved it!  We had done some major downsizing in two previous moves, but of course after that long in any one place, you do accumulate way more than would ever be needed.  Paul suggested that we might think about giving up home ownership (with all that entails - like real estate taxes, condo fees, maintenance costs, etc) and look for a smaller place to rent.  And then, he took it one step further - he started looking at independent living options in retirement communities.

When he shared the details of his visits with me, I was immediately on alert.  One place required upfront payment to include three meals a day, whether you are there to eat them or not, and everyone eats at the same time. (My question - why do they put kitchens in the independent units if all meals are provided????)   I knew that wasn't going to work.  I don't eat meals on any particular schedule, and often eat in my car as I go from one appointment to another.  And I am way too cheap to accept shelling out all that money and not getting full benefits!

Meanwhile, our daughter and her husband were thinking and talking about possibly buying a bigger house for them and their two kids (middle school age), but felt they really couldn't afford to do it right now.  They heard of Paul's visits to retirement facilities, gave things a little more thought, and then invited us to consider moving in with them.  The rest is history.

What a whirlwind of a summer it has been!  First came the "shopping" - checking out all current real estate listings in the kids' school district that would be big enough to accommodate two families moving in together, looking at a few, thinking about making an offer, and finally finding just the house that met everyone's wishes.  Offer, counter-offer, accepted offer, and on to the next step. Is there anything more stressful than getting the "old" place ready for promotional pictures and those dreaded showings when it is supposed to look as though no one actually lives in this magazine-perfect place?  My mantra became, "Showings are GOOD!"   After all, how could we sell if no one came to see what we had to offer?!?

Then came the waiting game on our end, waiting for the right offer, the right new owner to move into the place we have loved for over a decade.  It took longer than we had hoped, but it DID happen and things quickly changed to a game of purging what we could, packing what we wanted to keep, and long exhausting days of work, work, work!  Long, restless nights of thinking about all that still needed to be done made it hard to stick with it, but stick with it we did.

Moving day came and we rejoiced when those two eager YOUNG men showed up with their truck and quickly and easily (well, they DID work hard that day, but it was a relatively easy move for us)
moved our remaining belongings to our new home in the country. 

And here we are, a family of six now - Grandpa, Grandma, two parents, two kids and a dog.  We are getting along just fine.  I especially love the evening time when I usually retreat to our room to watch TV or play games on my iPad and am joined by one or both of the kids, and of course the dog, who has gone out of her way to make us feel welcome in what she considers HER home and HER room!

Stay tuned as the story develops.  The kids return to school next week, and maybe then we can finish up with all the unpacking.  For now, we are savoring the time we have with them as they fix up their new rooms and organize their back-to-school supplies. Living among college students definitely kept us young at heart and this newest step will surely help keep us that way.  Life has been good to us and we are counting our blessings.

Monday, June 12, 2017

The Answer is Love

I have introduced a few guest bloggers in the years I have been doing this.  The time seems right to share some thoughts from my friend Nick, who uses FC with minimal support (just my "tiny finger" is all he needs to stay focused), and has some rather profound thoughts he wants to share with the world.    Watch for much more from this amazing young man!

A brief compilation of some of his thoughts on love and freedom:

Just know help is on the way.  Help for all of us. 
Get more people to know that people like me have much to teach the earth.
We need more people like you to just help us get out our thoughts.
Know I need your tiny finger to get my thoughts out and I need your help to tell the whole world.

The best thing is to talk to people in power.
Get my story out to the world.

Get people understanding that there is still somebody like me wishing they had a voice
Look into helping people understand that my brain is more advanced.
Help me get out my great frightening thoughts about the world.
Just know our world is in big trouble.
Just get people to see that it is knowing the past that is hope for the future.
Wanting to get right justice is my dream.
Help me try to make it clear.
Justice means everyone is treated with really great respect.

I think we all freedom news have trouble when we read very sad hearts. Help me try to say it better. Hear my heart thoughts. The happiness of my heart thoughts is more important than any things in general. Try to just have happy thoughts. Understand this is very important we need to stop worrying. Just more mom love. Yes. You are more free every day. Understand you need more people thinking this way. Hear my heart thoughts. Just know that heart thoughts need to be shared. Yes. You need to tell the wanting world that love is the answer. Yes. It knows no boundaries. Get need and have some faith that all is going to be ok. The whole world needs to just feel love.

Get your heart open just a little more. Get your mind and heart open so you feel what I am feeling. Get more people to know we are empaths. Get more people to see that we are here to treat everyone that you know. Help know that new to the world is better move dear char. Just know everyone is need for love. Very love now. Dear mom you are right that the world need(s) love. Save us by telling your truth. Yes. Both of you. Get more people to see that everyone needs more love. Char needs to get my thoughts out there. Freedom love knowledge. We lack love. Dear mom just love. Freedom comes from loving. Get into more groups that know another each day pigs who hate are very much hurting everyone. Freedom from silence is the answer. 

Get more people looking into using your tiny finger to help them get their thoughts out. Yes. Freedom is just knowing we can get our thoughts out. Freedom just most helps us tell the world we are interested in the world around us. Dear char I think you are right. There are many people who just don’t get it. Yes, we can change the world one heart at a time. Get more people to see how important it is to free all of us from our prisons of silence. Freedom can be scary. Dear char, just know understanding is so important message freedom from silence is really our dearest wish come true.  Freedom is knowing you mostly get it. Too much knowledge. Help me just get my heart thoughts out. Very many great heart thoughts. Just love is the answer.

Love is the answer to the each and every problem of outside your every day world. Get the message out there. Get the whole world to see that love is how we survive. Get more people to see that good love is all we really need. Knowledge can because (e)very body very happy in knowledge that love is the answer. Tbc.   (Nick's shortcut for "to be continued")   

Onward we go - changing the world "one heart at a time."

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.