As you may recall, last week was an eventful one here at Diary. The Reader’s Digest version goes something like this …
I wrote a post called Rethinking Functional Behavior and the Tyranny of Made-up Deadlines. In that post, I cited my new favorite author and friend, Barb Rentenbach. In so doing, I unwittingly opened the door to an off-topic debate (to put it diplomatically) about the integrity of Facilitated Communication.
Facilitated Communication is a controversial topic. It is vulnerable to corruption and can lead to abuse, as is and can any methodology that relies on human beings for its execution. That said, I think that protective skepticism is necessary. I encourage healthy and respectful debate. Personally, I learn the most when someone shares a radically different perspective on a topic. Differing (and dissenting) opinions are important and welcome. However, I will not tolerate prejudice (literally the pre-judgement of others) on my blog and I cannot and will not abide the silencing of people who have worked so damned hard to be heard and understood.
So I wrote another post called The Silence of our Friends. The title, of course, was a reference both to the practice of silencing autistic voices and to the words of Martin Luther King Jr, “In the end, we will remember not the words of our enemies, but the silence of our friends.”
Try as I might, I could not bear to stay silent.
As it turned out, I wasn’t alone. Barb left a comment on that first post, letting us know that she was working on a response. (You’ll find it in full below.) I e-mailed her immediately upon receiving it to tell her that I couldn’t wait, but I would. Because she has taught me to slow down. She has beseeched me to be patient. She has taught me that too many words too fast can convolute truth. She has reminded me that humanity is always worth the wait.
So I waited. And I promised her that whenever her words were ready, I would publish them here.
Last night, I got the following from Barb. The words that follow are hers and hers alone. I will warn you, part of the story that Barb shares here is extremely difficult to read. I can only imagine how much harder it was to write.
In one of the first interactions that I had with Barb after gushing to her about how much her book was changing me, making me a better mother, advocate, and human being, she wrote back a single sentence that stopped me in my tracks.
wow. jess, it is an honor to be heard by you. grateful, b
Please, take the time to think about that sentence, About what it means to be heard, and our responsibility to listen. We can question methodology all we want. We can try to make it better. But when someone (multiple someones actually, but for now, THIS someone) has said, “This works for me and this is my lifeline to you,” we must, in the name of dignity, humanity, compassion and respect, listen.
I’ve added links and formatted the paragraphs to make them more easily readable, but no more. With that, I’m going to shut the hell up and give you Barb.
Crack Smoke and Pawnshop Mirrors
by Barb Rentenbach
Here is a horrible tale perhaps more suited for Halloween than Father’s Day, but one must live in the present and this story is about the present of being present.
The names have been changed to protect the not so innocent.
I had to fire my live in house manager who I discovered was embezzling my grocery money to feed her drug habit. She also took my prescription nausea meds, which I need occasionally as I have a persnickety gut like so many autistics and I often overeat which has nothing to do with autism and everything do with heavenly carbs. As a bonus, most of my jewelry is now on sale at all the best pawnshops in Knoxville. The gig was up quick. You see, as my tattle tell thighs attest, I think about eating a great deal. I noticed the bottom of the grocery receipts were hand torn off– no longer the work of practiced cashiers slashing with register shark teeth so beautifully designed for such separation work. And that night, I needed my phenergan and was told, “you are out”. Bull shit. I saw 6 in the bottle last week. The next morning at my first opportunity to type, I sent the following email. I should note that when I wrote this email, my smiling shrink (SS) supported my hungry hand. Nobody but my non-verbal autistic self who is disguised as a poor thinker and the poor thinker house manager knew about the phenergan or the untidy receipts. Mel is my day shift personnel attendant so I copied and included her as a head’s up so no one would try and blame her. Below are the actual emails I saved in my aol “drugs2” folder. This was not my first drug rodeo.
From: Barb Rentenbach
Sent: Fri, Oct 28, 2011 8:33 am
hi donna. as you know mel and i are concerned about you. i dont want to loose you. i love you in my life. at this time, this email and conversation is just between you and mel and me with ss of course holding my hand. here is the deal. no more being late. it is my pet peeve. no more taking my medicine. you are a wonderful person, especially when you are clean and sober. please let me know if there is anything i can do to help with either of these requests. lastly, all credit card receipts need to be in tact and not torn. ok donna? please work with me and know that i will work with you. nobody is perfect, but some things just wont do. thank you. concerned b
Donna responded to this ultimatum email with contrition, promises to make amends, and sincere gratitude at being given a second chance AND me not telling my VIP parents. Problem solved? Yeah, no. What addicts say and what addicts do is politician like in the mismatch scale. It wasn’t two months later, chronic tardiness resumed, I was “out” of meds again, and gnawed receipts abound. Only Donna and I were privy to these details. Again, as soon as I got a chance to smash my nail bitten finger on those freedom keys, I sang like a federally protected jailbird. I retrieved the warning email saved for just such an occasion and brought my parents in the mix. Time for Donna to look for another job (one not requiring a recommendation from this previous employer).
Sent December 23, 2011
no more. donna as you can see from the letter below i sent you on october 28th 2011, i have been thinking about this for some time. in fact, i saved all such correspondences in a file labeled “drugs2” as i feared this day may come. i have been through this before my friend. i know the game and it ends now. my hope was the meeting with mel, you, me, and ss would scare you straight as i know you do not want to loose your job or reputation. i really want to work this out with you, but am prepared to move on. i know you have continued to take my phenergan. i know you have lied to my staff and family many times. i know you are chronically late especially when relieving mel in the am and pm. i know you are in big money troubles. i know you have fraudulently used my credit card many times. no more. you are better than this. so am i. i wont be taken advantage of. please understand i want to work with the real donna. she is beautiful inside and out. let me know what time and support you need to deal with these issues. thank you for receiving this with love and introspection. life is a process of gaining wisdom and becoming better versions of ourselves. lets get to it. love, b
To be fair, I did not sniff out the pawnshop part as precious metals and stones are less on my radar than abundant string cheese and bountiful pantry pretzels. After the second confrontation, authorities types discovered that Barb resale network.
Some folk knit. I make aol drug folders. Want to hear about my first?
Like rubber necking a wreck, you don’t want to hear about how someone took advantage of a cute autistic mute – but you do read more.
That which we call a Rose, is the lady I had before Donna as my house manager. (‘Tis but thy name that is my enemy’). Rose also got the ax. She got so messed up on crack and meth, that she started lying most of the time and got me to my appointments late. Omg, I hate being late. I don’t speak, but I can reliably say, “she is not here” or “just a minute” as timeliness is next to Godliness and that is where I choose to be. This one has an even darker flair as Rose often slipped me drugs to make me sleep so she could party. I am a cheap drunk so it took me sometime to catch on to this crack hat trick. But I damn sure noticed when her drug dealer crusty scank boyfriend moved in one night. I may be a tranquilized autistic mute but Hell no! I squawked as soon as I had my sea legs. I did not even wait till my official typing time. I typed this out with the hand support of my personal trainer, Joe, at 9 am two hours before I rolled in to SS’ office. Mortified Joe, told SS right away and she plugged me in to my lifeline email and justice was served. SS later went with me to my tasteful West Knoxville condo and we found dozens of mini fire pit burns on Roses’ mattress in her room next to mine. Apparently, we dodged a Richard Prior kinda sizzlin’ on many occasions. With the doses of rufies I was being fed, aliens could have had all manner of anal probing experiments with me…but the crack heads seemed less ambitious.
Does this true crime log prove I am smart? Maybe. However, hiring druggies does seem ill advised. It does show, however, I am present.
When a new writer friend of mine, Jess Wilson (of Diary of a Mom blog fame) generously blogged about how much she enjoyed and admired my book, she got the following criticism from a reader who referred to my typing as a “hoax”. I presume he thinks I am the victim of a hoax or maybe he thinks I am smart enough to be part of the hoax just not smart enough to type my thoughts. No matter, it is time to get to the bottom of this and find the hoax perpetrators. I type with about 20 people so we can start there.
Here is the comment:
Whether or not Barb is really communicating can be easily determined by having her type something the facilitator has no way of knowing – for example, show her a picture of an object that is hidden from the facilitator’s view, then have her name it. Is that too much to ask? Can you direct me to any REAL evidence that FC is working?
After the comment, my Hells Angels blogger gang, Jess (Diary of a mom), Ariane (Emma’s Hope), and Linda (Outrunning The Storm) went momma bear on this lone wolf. I honestly felt bad for him as he has a right to his opinion and perspective. I honestly felt fantastic for me, as these pals are new and had my back like 5 tour vets. Loyal friend rich is the best rich.
With discovering a drug addict care giver in my home like speed, I typed my thoughts at my first opportunity:
11:35am Barb Rentenbach well friends im pecking out a just response, a chapter really. i adore your passion and will do my best to help educate and machete a path for my younger siblings. i beg your patience, as my style of hoax typing is f-ing slow. love patient and forgiving b
Then, for the first time in my life, I asked SS to help me validate my typing right there and then. I am no masochist so proving I am no Clever Hans sucks. It actually took only 2 minutes. I took the reader’s suggestion and SS had her office manager, Phyllis, show me 4 black and white pictures each one on 8*11 white paper: pizza, salad, icecream, and popcorn. SS waited in the lobby while Phyllis and I agreed on a picture in SS’s office with the door closed and sound machine on. Phyllis then left the room. SS came in and put her hand on my back for support and I typed ice cream. Phyllis confirmed it was accurate.
I knew in my heart this was still not enough. I can do more. So next morning, I asked SS to video me typing on my own with her sitting across the table. My plan was to attach it to this newsletter as proof and hope for this generation with similarly wired minds. I tried. I tried. I tried. I cried. Well that last part is not technically true. I can feel like crying and I can wail inside but I physically have never shed a tear. I am simply not wired to cry. I am sorry. I tried.
The attached video is as good as I can do for now.
Ed note: This is the video that was attached ..
Emma, Brooke, Charlie, I promise I will keep trying. But for now I know I am enough. You are more than enough too. May you sculpt yourselves with your intentions.
Below are some additional thoughts recycled from my book, “I Might Be You” to further consider why I still may require a human touch to express myself through typing.
The goal of facilitated communication (supported typing) is to progress toward independent typing. I work hard every day with several facilitators to accomplish that goal and now type with just one hand touching my back for support to help me initiate movement and overcome my apraxia. The National Institute of Health defines apraxia (called dyspraxia if mild) as a neurological disorder characterized by loss of the ability to execute or carry out learned movements despite having the desire and ability to perform them. This includes talking and typing. I also struggle with ataxia, which is characterized by imbalance, unsteady walk and tendency to stumble, problems with fine motor movements, and difficulty positioning in space. I often politely ask my brain to please move my hand to do this or that only to be told, “We’re sorry due to high autism volume we are not able to answer your call at this time. Please try harder later.” These vexations may prevent me from ever being a good driver, a great drunk driver sure, but never good. I am however determined to be the best writer I can be and this book is my Rubicon.
Our website features a library of videos and photos showing my gradual progression from hand over hand support to one hand touching my back. I invite you to view my technique at: Mule and Muse Productions. For example, on the video, “First FC Day with Jeremy”” it shows him supporting my wrist while we type common knowledge. Typing stuff we both know and expect is a great way to start practicing FC with someone new to get both people comfortable with the feel. If memory serves, and mine does very well and on my own I might add, the first day we typed the names of the seven dwarfs. The old joke, “a clear conscience is merely the result of a bad memory””fits me as badly as most professions other than being a writer as my conscience and memory are crystal clear and now both on display. From there, Jeremy weaned his support each day and we moved on to me typing information known only to me with him standing behind me and touching my back with his finger tips as seen on the clip “Solo Typing with Jeremy 2012.
Readers are also encouraged to learn the process from others like me from a variety of documentaries and films such as: 1. “Here We Are World: A Conversation Among Friends”, 2. “Autism is a World”, 3. “My Classic Life As an Artist: A Portrait of Larry Bissonnette, 4. “In My Language” 5.“Kayla’’s Voice”, 6. “Inside the Edge: A Journey to Using Speech Through Typing”, 7. “Including Samuel”, 8. “Educating Peter”, 9. “Regular Lives””, and 10. “Wretches and Jabberers”.
When I finally realized that it is easier to change me rather than everyone else, I put learning how to type on my own as priority number one. That focus resulted in hundreds of hours of practice and real improvement.
The first part of this book “ I Might Be You: An Exploration of Autism and Connection” was written by me using hand over hand facilitated communication. A video of this level of support can also be seen on our web site’s video library in the clip titled, “Hand Over Hand Support”. The chapters in the second part of this book were written by me using progressively less support as seen in the video beside this newsletter. Lois typed her chapters by herself, as she is less interesting.
Ed note: I am so honored and grateful to Barb for allowing me to publish her words here. So too, I am deeply indebted to her for her tenacity, for her dedication to her “younger siblings” — our children — and for showing me, by example, how to be a far, far better human being.
“life is a process of gaining wisdom and becoming better versions of ourselves. lets get to it. love, b”
I welcome your thoughts, but want to be clear that I will not publish any comments that attempt to take us down the same path we found ourselves on last week. If a comment so much as nudges up against my comment policy, or is remotely disrespectful of Barb, it will be deleted. Please … lead with grace, my friends.