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.”

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.

"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.

Special Education Vouchers - IMHO

The allure is definitely there.  So many families are not satisfied with the program offered to their child with special needs.  They are told one way or another that what they are asking for is a "Cadillac" program and the best the school district can offer under present circumstances is more of a "Chevrolet."  (I have personally heard that analogy more than once!)  And they are reminded, ever so gently (or not so gently) that the public schools must educate ALL students, so if their particular child would be given all they are requesting that would certainly take services and programs away from others who are also very deserving.  Most parents are all too aware of this.  They have other children in the system, they have relatives, friends and neighbors who attend the local public schools.  They know budgets are limited. They want good programming for all students.  But they also want this particular child to receive the very best in the way of an education, with all the supports and accommodations that might be needed to make this a reality.

And then perhaps they are offered an alternative - usually in the form of legislation at the state level.  What if we give you a voucher (X amount of dollars) and let you choose whatever program would best meet your child's needs?  Choice is good, alternatives are certainly something desirable, and maybe there really is a program out there offering an attractive option.  What could possibly go wrong?

Let's say the parents visit Perfect Voucher School (PVS) and hear from the administrator that this school is staffed by teachers who really care about each and every student, class size is always kept small, and because we are not part of the public school system we have lots more flexibility in how we teach.  We are free to adapt to the needs of your child, whatever they may be.  We would love to have your child become a part of our school community. How can they refuse?  Why would anyone not jump at such an offer?

So, they take the voucher money and enroll their child in PVS at the beginning of the school year. 
And all seems to be going very well, until sometime in early October, when they are called in for a meeting with that very same administrator, who apologizes for being the bearer of bad news --- BUT it has become abundantly clear that the arrangement is just not working out.  The child is too disruptive, requires too much of the teacher's time and attention, is causing problems with other students; other parents are complaining . . . whatever; it just isn't the right place for them.  Or perhaps, as has happened all too often, sometime in the middle of the school year, PVS suddenly shuts down, usually because of financial difficulties, leaving families scrambling.

At this point, options still exist, but they are limited.  The parents can choose to homeschool their child or they can return to the public school.  The public school will be required to re-enroll the child immediately and continue with plans for that Chevrolet program.  But all those voucher dollars remain with PVS, making funding at the public school even more limited than it had been.

Here is the harsh reality:  Voucher schools operating as for-profit entities outside of the public school system really do have a lot of freedom and flexibility, but at the same time they have NO obligation at all to provide teachers who are trained to work with kids with special needs, NO obligation to follow an IEP that has been developed for a particular student, and rarely, if ever, have the services of specialists such as Occupational, Physical, or Speech/Language Therapists. 

Public schools are obligated to provide a "free and appropriate" education for all, and they are being asked to do this with less and less financial support.  If we fail to provide the resources needed, everyone suffers. 

We have traveled too far along this path already.  Expanding private school vouchers and/or offering "scholarships" to those with special needs, while at the same time starving the public schools,  would spell disaster.  I don't think I am exaggerating.

Resource list for Typing to Communicate - Suggestions to get you started!

When I first encountered a student with the label of autism, I felt very much alone.  There was virtually NO information available, no Google to search, no social networks to answer my questions.  It was very similar when I first started using Facilitated Communication, although I was, at least in the early years, in an environment that was very supportive.

Now, it seems, the opposite is true.  There is an overwhelming amount of information out there and it can be hard to sort it all out, and just about impossible to keep up with Internet news and discussions.
And if you happen to enter "Facilitated Communication" into a search box, much of the "environment" is definitely anything but friendly!

So, I have compiled a couple lists that I hope will be helpful in getting you started if you are interested in learning more.  Have fun!!!!

Suggested Resources – Typing to Communicate

Books

Autism and the Myth of the Person Alone  by Douglas Biklen

Carly’s Voice by Arthur and Carly Fleischmann

Communication Makes or Breaks a Life by Roy Bedward

Contested Words/ Contested Science by Douglas Biklen

Facilitated Communication Case Studies: SEE US SMART! by Charlene Brandl

I am intelligent by Peyton and Dianne Goddard

I Might be You by Barb Rentenbach and Lois Prislovsky

Ido in Autismland by Ido Kedar

Paid for the Privilege by Dan Reed

Real People, Regular Lives by Sally Young

Reasonable People by Ralph and DJ Savarese

Sharing Our Wisdom by Gail Gillingham and Sandra McClennen

Synergy by Barb Rentenbach
The Clear Blue Sky of My Good Mind by Roy Bedward 
The Reason I Jump by Naoki Higashida

Any book by Soma orTito Mudkhopadyah 

DVD’s

Autism is a World
I am in Here 

Inside the Edge

Kayla’s Story

Wretches and Jabberers

Web Sites

http://www.autcom.org

http://everyonecommunicates.org

http://www.annemcdonaldcentre.org.au/

http://soe.syr.edu/centers_institutes/institute_communication_inclusion/default.aspx

Typing to Communicate - videos

D J Savarese    http://vimeo.com/112959913

A “work in progress” by movie maker Rob Rooy, telling the story of DJ, as he went through high school in Iowa and then goes off to college.  LOTS of clips available on Vimeo!

Bridges-Over-Barriers    https://www.youtube.com/watch?v=JentrBCN7Z8

A group of typers in Canada, with a great video sharing their words and telling their stories.

Carly’s story on ABC   https://www.youtube.com/watch?v=vNZVV4Ciccg

Shows Carly’s early life with autism and wrong assumptions. 

Jamie Burke’s story   http://savedbytyping.com/jamie-burke/

A brief promo for the video, showing the growth of this one individual - who has now started talking along with his typing.

Tim Chan (Australia)   https://www.youtube.com/watch?v=279h9QJ9ptw

Demo of using FC with less support; Tim types about needing full support in the beginning. 

Marlena  Katane (Australia)  https://www.youtube.com/watch?v=279h9QJ9ptw

Marlena has Cerebral Palsy and loves typing with new facilitators and celebrities;  this focuses on showing that her communication is indeed valid, even though she needs physical support

Sue Rubin    Autism is a World   http://savedbytyping.com/sue-rubin/

This is a clip from the documentary that was nominated for an Academy award.  Full length video is available in libraries across the country. 

Saved By Typing http://savedbytyping.com/see-supported-typing-allows-nonverbal-autistics-communicate/

Several different short videos available here, including at least one of a group, typing with whatever level of support each person needs.

Tito M.’s Story (CBS)  https://www.youtube.com/watch?v=Nfiap3a7Tuo

This shows Soma’s early work with her son Tito using Rapid Prompting Method

Typing to Communicate - Blogs to browse/follow

Char Brandl   http://grandmacharslessonslearned.blogspot.com

Emma’s HopeBook    http://emmashopebook.com/

Ollibean (Amy Sequenzia)  http://ollibean.com/tag/amy-sequenzia/

Opinions Learned from RPM/Autism(Ann) http://www.opinionslearnedfromrpmandautism.com/

Amanda “Mel” Baggs   https://ballastexistenz.wordpress.com/

Barb Rentenbach  http://muleandmuseproductions.com/blog/

Ben Kingston  http://thetruebenkingston.blogspot.com.au/

Brayden’s blog  http://braydenfsblog.weebly.com/blog

Henry Frost   http://ollibean.com/category/blog/henry/

Ido Kedar  http://idoinautismland.com/

Matteo’s Advice  http://matteosadvice.weebly.com/

Cherubs Wired Differently (Peyton Goddard)  http://www.peytongoddard.com/blog/

Faith, Hope, Love with Autism (Phillip)  http://www.faithhopeloveautism.blogspot.com/

Sarah Stup   http://sarahstup.com/blog/

Roses are Red for Autism  https://rosesareredforautism.wordpress.com/