It's Not Just One

It's not just one  --- person

While most of us start out using Facilitated Communication (or any of the newer variations of typing/spelling to communicate) with just one individual, it usually doesn't take long to realize that this particular individual is not the only one who can benefit from this alternative form of communication.  In my case, I started out working with a young girl whose parents were eager to give FC a try. She let me know in very short order that several of her friends at school were also very smart, and she wanted me to try using this new method with them as well. I tried, they proved her right, and the fun began.

Here we are, over 30 years later, and there is a brand new movie out --- "SPELLERS" has now been watched by millions and features eight young people who use a letterboard or keyboard to answer questions and share their thoughts. In the intervening years, many other typers have been featured in books or films, many have given presentations, some have graduated from college, and there can be no doubt that it isn't just one person who has been helped by some form of spelling or typing.

It's not just one --- area of disability.

Rosemary Crossley started using FC with Anne McDonald in Melbourne Australia, and expanded the method to others with severe Cerebral Palsy (like Anne).  Doug Biklen visited the facility where Anne was living and brought FC back to the U.S., where he and others expanded its use to students with autism who were nonspeaking.  

At the present time, the emphasis is still on nonspeaking autism, but many individuals with Down Syndrome, along with many who have been labeled as "severely cognitively impaired" (or some variation of this unfortunate label) have also proven that they have much to say and have many abilities that have been untapped and unrecognized.  Ever so slowly, we are doing away with the idea of IQ scores or functioning levels, and instead learning to always "presume competence" regardless of diagnosis or outward appearances.

And it's not just those who struggle with spoken language.  I have personally used FC with several individuals who speak quite well, but don't use the spoken word to communicate effectively.  They might have a few favorite topics they repeat with anyone willing to listen, but can't or don't answer even the most basic questions and don'r really engage in back and forth conversation. Using FC seems to slow them down, and help them to focus enough to carry on a meaningful exchange with a conversation partner.

It's not just one --- method

I am thrilled to see what is happening with the newer forms of spelling or typing to communicate.  Soma Mukhopadhyay introduced what has come to be known as RPM (Rapid Prompting Method) and several years later S2C (Spelling to Communicate) was born.  Call it letterboarding or supported typing --- what all of these methods have in common is a belief in the ability of those who struggle to use spoken language.  This is where "presume competence" enters the picture.  Throw out all our old ideas of mental retardation or intellectual disability and see what happens if an individual is given a means of communication that works for them. Recognize that neuromotor differences cause a variety of problems with motor performance, which is critically tied to the use of oral speech. Provide needed supports, training and practice, and you might find that these individuals know much more than any of us ever suspected.

It's not just one --- reason for rejection and controversy

Acceptance of some form of typing or spelling as an alternative form of communication might seem like a no-brainer for those who are nonspeaking, or minimally speaking, but the opposition has been intense. 

Established interventions for autism and related conditions are more deeply entrenched than we might realize.  Almost all are based on some form of behavior modification, and almost all have become highly profitable businesses.  Often, ABA (Applied Behavior Analysis) is the only intervention parents hear about, and often the only one that is covered by insurance plans.  Prescription medications are similarly covered by insurance or Medicaid, and might be the first thing physicians suggest when parents request help with their young child with autism.

In the early years of FC, some individuals who were given a voice for the first time in their life used that voice to report some form of abuse in their lives (present time or sometime in the past).  Others wanted to share messages that were highly spiritual in nature, or seemed to be evidence that they were able to read the minds of their communication partners or parents.  Either/both of these situations quickly became problematic, especially in school settings. 

FC was criticized most of all because it involves the physical support of a partner or facilitator.  But the fact that both RPM and S2C carefully have eliminated this component by working on independent pointing to letters from the very beginning, with NO physical touch involved, and are still being rejected by most schools and the American Speech/Hearing Association (ASHA), leads me to believe that in reality the biggest obstacle is that professionals in this field have a very hard time accepting that they might have been wrong.  They simply cannot see these individuals as intelligent, they can't admit they might have underestimated them, they can't allow for the changing paradigm that is needed here.  Whether the resistance is due to ego, or possible financial losses, it is our vulnerable friends who need access to an alternative means of communication who are being silenced.

We all need to hear what these amazing individuals have to say.  They have been locked in silence far too long.According to SPELLERS - the movie - there are some 30 million nonspeakers in the world.  Most are still waiting to find their voice.

 

REPEAT: They DO Grow Up!

 I feel the need (for so many reasons) to share this one again - eight years later.  Seems to me the need is only getting greater.

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.