Wednesday, May 12, 2021

Communication Matters - at Any Age

I have written a lot about my early years as a teacher, and in particular the years when I used Facilitated Communication with young students in elementary school.  In sharing the stories, my hope is to make it clear that some form of typing or spelling to communicate can make a significant difference in the lives of just about anyone who struggles to use spoken language.

Many of my young students had the label of autism, many of them were boys, and many of them didn't really talk at all.  But they weren't all boys, they weren't all autistic, they weren't all non-speaking, and they weren't all young.  Once I retired from teaching, I was fortunate to find a group of adults whose parents or guardians were hoping to find a way to know what their loved one or program participant might be thinking.

Leaving the school system at age 21 or thereabouts leaves many "graduates" in need of a variety of supports and programming.  Some of the adults I have worked with over the past 15 years had been introduced to FC in their earlier years.  In other cases, parents had been reluctant to even give it a try because of all the controversy, criticism, and negative press surrounding the method.  

Leaving the school system was totally freeing for me personally - Gone were the IEP meetings, gone were the battles with administrators who didn't like what I was doing, gone were the long meetings and written reports, and gone were the demands of assignments that needed to be completed. When I started meeting with my adult clients. we really had just one goal - friendly conversation.   

What a pleasant surprise it was to meet three very special women, all of them over age 60, and all of them misunderstood and underestimated for most of their lives.  Born before laws were passed to open the school doors for ALL students, unfortunately born in era when doctors and other professionals regularly recommended institutional placement for folks who had multiple disabilities, were non-speaking, had very low IQ scores, or were likely to need lifetime care --- if any of these women actually did go to school, it was not likely to have lasted for long and was probably not a pleasant situation.  Autism was not yet being used as an educational or medical label, and most likely all three were considered to be severely mentally retarded, in the accepted terminology of the time.

Sharon, Linda and Judy (not their real names) were participants in a day program when I met them.  Linda's guardian truly cared about her welfare and wanted some additional intervention to see if a better means of communication might be possible.  The coordinator of the program was well aware of the controversy surrounding what I had to offer, but luckily for all of us was willing to take a chance and give FC a try.  She and her staff went out of their way to provide me with a quiet space to meet with each of the women, and always made me feel welcome when I arrived for a visit.

So, if you have been unable to speak all your life, and everyone around you thinks you don't have the ability to think, learn or feel, what might you have to say if someone like me comes into your life offering a letter board and whatever support you may need to get started?   Here are some sample comments: 

Sharon:

just  be here every day. 

i need you to help me.

typing is my best thing.

my mind is good

in my mind i know much more.

i wish my mouth could say what i am thinking.

get more people to see my intelligence

free me from my prison

i want you to help me be free

i get angry when people treat me bad

i want people to know i just know much more

i know how to read 

i want to know more about just everything.

i am really thinking that i look like i don't know much but really i know so much.

Linda:

be patient

help me just be more happy

i love to type

try to help me type more

we should talk about wanting to have my book written

everyone here sees my intelligence

really i am right where i belong

really i am very happy

get more people to see that we all have much to say

just keep trying to help me get my thoughts out

we should try to tell everyone that i know very many things and would get them out if i could type better. 

Judy:

i know much more than you.

understand i must try to tell people that love is everything.

know that i might be more intelligent than you.

please try to help me understand liking my life.

i like being here and typing.

i hope my life might be more interesting.

help me know good ideas.

please hope that i might have more love.

i need more good people in my life.
 
just know i look up to help my hopeful heart.
 
As for me and my hopeful heart, I will never stop shouting to the world that far too many folks - of all ages - are trapped in prisons of silence.  Let's help them find their voice.