Friday, July 22, 2022

Getting Stuck and Then Unstuck

I seem to have hit a long spell of writer's block. I think I know why. With all that is going on in the world, and being the news addict that I am, it is all too easy to get buried under all the bad news. In an effort to stay positive, I have tried avoiding negative stories of any kind. But it turns out that I have one or two not so pleasant stories to tell, and I don't seem to be able to go forward until I share them.  If you personally choose to wait for the happy stories to return, I will certainly understand.

For some time now, I have been thinking about endings, and unfortunately most of them have been sad. One of my mom's favorite sayings was "All good things must come to an end." I think she was trying to help me over moments like when the parade was over, or we put away the holiday decorations. I was not the easiest child to console at such times, as I recall. Things can end with a bang or a whimper, and in my career as a teacher, and especially when supporting folks who type to communicate, I have experienced both.

The easiest way to end a teacher-student or facilitator-typer partnership --- at least for me --- has been when one of us has moved away.  That was always sad, but it somehow seems natural, something to be expected in the normal course of  life.  Families move, teachers get reassigned, students move on to a new school, etc.  As a good friend reminded me many years ago when a favorite student was moving to a different city with her family, "There will always be more kids who need you."  

The hardest  for me have been the instances where a non-speaking individual has used Facilitated Communication to report some type of abuse in their lives, and either the school or the family makes an abrupt decision that there will be no more contact between the two of us.  Thankfully, this has been a very rare occurrence, and I will not be discussing these situations to protect the privacy of everyone involved.  It probably goes without saying that these were very painful experiences that I will remember always.

I don't know whether to consider the pandemic shutdown a "bang" or a "whimper" experience, but it certainly did bring an unexpected end to much of what I had been doing ever since my retirement from teaching. On Friday the 13th of March, 2020, I met with two young men for about an hour each. "T" was the first, and we were using extra precautions (masks and gloves) so we could have an almost-normal typing session.  T was obviously aware of what was in the daily news reports, and obviously concerned about my welfare.  This is what he had to say:

"I might make you get it. Please help lots of people get over their fear. I might be more informed but I still have lots of fear.  Please help more people know how important it is to be careful. I just think fear is not healthy.  I think people have good sense.  How can I be more careful. Please be more careful.  You help me very much."

And then I met with "R", who managed to sleep soundly for almost the complete hour we were together.  At the very end, he woke up just enough to type:  "Please please be more careful I don’t want you to get it."

At that time, I was meeting with about ten different individuals on a regular basis.  Some of them I have not seen since then; there were no goodbyes, no parting words, and little or no updates on how they are doing.  Others are part of my life once again, now that we are all vaccinated and feeling safer about meeting.  For those who have a communication partner in their lives, it is much less distressing to let go, but when I know that some no longer have access to FC, or any other means of communication, I am haunted by thoughts of what their lives are now like. 

One amazing young woman had told me via typing that she dreamed of an apartment of her own, maybe with a roommate, and a career that involved drawing cartoons or illustrating books. We met regularly for several years and then she had a psychotic break. I visited her in more than one hospital setting and in more than one "safe house" after she was discharged.  But we never typed together again.

An amazing young man - also after several years of regular visits - came to my office one day with his support worker, sat on the floor and started to cry.  When I was finally able to coax him to do some typing he told them that he would never be seeing me again. I tried to reassure him that all was well, but I was acutely aware that his school days were ending and no one had informed me of what the plans were after "graduation." It turned out that he was right.  I have not seen him since that day and never did hear anything from his family.

I hope this link works for you.  It is my story about three very special senior citizens who found their voice through typing later in life.  What fun it was getting to know them, and how sad was our parting.  

 http://grandmacharslessonslearned.blogspot.com/2021/05/

Thanks to some forward thinking workers in an adult day program, and one very supportive guardian, I started using FC with one woman ("Linda") and soon was asked to give it a try with another ("Sharon"), and finally we added "Judy" to my weekly visit.  I was assured that in each case the woman's guardian had given full approval for these sessions, although I had only met the one who had gotten things started. I usually met separately with each woman for about 30 to 45 minutes, depending on their level of interest and stamina that day.  Judy had a visitor one day who joined us for our session, and I was happy to give a demonstration of what we had been doing.  Little did I know that would be my final session with Judy. As best I was able to figure out, that visitor was from an agency working with the guardian, and somewhere along the line the old FC controversies must have surfaced.  Without involving me at all, the day program was told there would be no more typing sessions with me, and that was that. 

Ah, but Judy did not go quietly back into a life of silence.  I continued meeting with Sharon and Linda, but we had to be sure the room we used was locked and the window covered because Judy stayed close by, waiting for her turn. It broke my heart to hear her yelling outside the door and trying to get in.  As I left for the day, she would grab my hand and refuse to let go. 

Sharon was next. Once again, I was told that the guardian had insisted that all typing be stopped immediately, leaving me in the very awkward situation of having to walk past both Judy and Sharon when I arrived and when I left, in order to have my typing session with Linda.  Sharon was much quieter, even as Judy became louder and angrier, but it hurt me to see Sharon withdraw into silence in a far corner of the room, lost in thoughts she would never be able to share. 

For a brief moment in time, we had good things going.  I know I have touched many lives, and I try to hang onto that. I plan to continue doing what I can to help nonspeaking folks get their thoughts and feelings out for as long as I possibly can.  But there will always be pain and regret for those who have been silenced, and also for those whose voices have not yet been found.