on being heard – with barb rentenbach


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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.

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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

To: “Donna”

Cc: “Mel”

Sent: Fri, Oct 28, 2011 8:33 am

Subject: concerned

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.

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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.

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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.

32 thoughts on “on being heard – with barb rentenbach

  1. My thoughts are that Barb is an amazing person. I have no other words right now other than to ask, “Who can question her authenticity”?

    Love you,
    Mom

  2. thank you both. barb, you rock and i love your delivery. what you say is so much more important than how you say it.

  3. I agree with your Mom wholeheartedly Jess. Its been months since I’ve been here because I couldn’t deal with anyone elses battles while dealing with my own. I’m so sorry – I’ve missed being here. I am, however, so amazed that of all days to come back – I came back on Barb’s day. And I want to say this to her…

    Barb – thank you. You encouraged me on a down day to keep doing what I do to give my son the best opportunity for him to live the most awesome and fulfilling life he possibly can. I’m hearing you too Barb. A big hug to you.

    And Jess… once again… my gratitude is ever yours.

    xo
    Sugar

  4. Thank you Barb. I have always believed that Boy Wonder is in there. I had shoe tying removed from his IEP goals this year and ask that they spend more time on typing and learning to read and spell. Thank you for sharing your voice and story. It gives me hope.

    Jersey

  5. I’m in tears after reading this. Not because I am sad (thought horrified at how you were taken advantage of), but because I am so moved by your video. And by your wit, and tenacity.
    My daughter’s biological father is not in her life due to drugs (and she’s better off that way). My husband has known her since she was 2. Before her diagnosis. Before our worlds changed forever. He has stood by us. Gone to doctors, and taken her to therapy, and taken days off work to be at her IEP meetings. He didn’t have to. He could’ve heard the word “Autism” and ran the other way. But he didn’t. Instead, he stayed.He married me. We had another child together. He treats my daughter no different for not having come from his sperm. So, your video moved me in a way I can’t truly express. YOU move me in a way I find hard to express. I’m honored to hear your voice. Thank you, you are truly an amazing human being.

  6. As I read this, I was first struck with Barb’s incredible sense of humor. In the face of adversity (okay, that is just one very broad term encompassing a WHOLE LOT of atrocious human behavior), Barb was able to rise above. I hope everyone recognizes this for what it is. Barb is no one’s victim. She has such a strong sense of self and such a unique blend of compassion and humor. No offense to all of us who consider ourselves to be (shoot, I don’t know what term to use that is most politically correct)…non-specially-abled, non-ASD….but, I believe we just got schooled. Barb, you are the woman I want to be. You very clearly know who you are. You know how to throw down a boundary. You know how to lovingly confront. You know how to take care of yourself in a world that is quick to take advantage of anyone perceived as weak. You, Barb, are anything but. Far beyond your challenges to communicate, I admire you as the strong woman you are. I hope my daughters grow up to be just like you.

  7. Thank you for your words of wisdom, Barb, and thank you Jess, for sharing Barb with us here. There is one thing nagging at me, however, and it’s this: Over the past year I have had the opportunity to meet and interact with about 20 non verbal, autistic young people, and I feel as though they have enriched my life far more than I could have imagined. There are so many that have so much to say, but no means of communicating, and I don’t see anybody working towards it as a goal for them. I know several young men living in a group home, where they are fed, clothed and seem to be well cared for, but have no families to advocate for them. Then there are parents that I meet that have never heard of ASAN or read anything written by someone on the spectrum (with the exception of Temple Grandin). So I guess what I would like to see happen is that we somehow make it common household knowledge that it is well worth the time and effort to not only teach facilitated typing or any other method that may encourage communication,but to implement it in our ESE classrooms, autism programs and vocational programs. Hopefully, with all the amazing autistic voices we are finally hearing (Barb, Carly, Landon, Julia, to name a few) and writers like Jess and Ariane to lead us to them,in the future every one that wishes to make themselves heard will have the opportunity to do so. For my part, I talk about these writers and bloggers to everyone in my circle and try to spread as much awareness and acceptance as I can, but my circle is small, so thank you for leading the way, once again, Jess.

  8. In awe. Barb is truly an amazing person and writer, as are you, Jess. It makes me sad for all of the non verbal people in our world who never got to ‘speak’, but motivates me to look at all people a little differently. My eyes and ears are definitely open wide.

  9. How anyone can question that she writes this herself is beyond me. The consistency of her voice and humor (when she has so many facilitators) alone says to me that this is all her. What a delightful person to read. Lots of love to her.

  10. This was wonderful to read, Barb. I have no doubt everyone who just got their first chance to experience your wit and your humor and your beautiful way with words will be signing up to be a part of your Hell’s Angels blogger gang now. 🙂 xo

  11. love that you bring your trademark heart and compassion even to the most difficult issues. lot of people avoid thorny topics…you open them up, make them accessible for a wider audience. great post.

  12. Dearest Barb – that excerpt that you included.. the one from your audiobook? That was the one time during the recording of your audiobook that I completely broke down. You can still hear the emotion in my voice as I read your beautiful words and that was after many, many takes. It was beautiful to read that first time and no less so now after reading it so many times.
    You are a light. Continue to shine and I will follow.

  13. Barb, all blessings to you. Please do keep writing. My daughter ranges among the cosmos. Sometimes she shares. The day to day stuff that you have such trouble with is so unimportant in comparison.

  14. Incredible, powerful, inspiring words. I LOVE the way Barb writes and want more. Thanks Jess for introducing us to this amazing woman.

    “life is a process of gaining wisdom and becoming better versions of ourselves. lets get to it.

  15. just thank you all. and jersey, you are on the right path. i happily and shamelessly wear velcro shoes everyday. barb to barb please keep sharing your warmth and gratitude as expressing together we will move more. lisa, no one – no one has ever told me, “i hope my daughters grow up to be just like you”. looks like you just gave my dad the father’s day gift of the year. love, light, intriguing, humorous, compassionate, and in school b (that sign off sounds less braggy when we remember we are all the same and are all that and more when we choose.) thanks for hearing b

    i invite you to stay connected with me on my newsletter at: http://eepurl.com/xY9MT and if you are feeling extra helpful , please write a 5 star review on amazon.com grateful, b

  16. I agree with Lisa and all the people posting here. Barb, you are a wonder, an amazing person. I too was struck by your sense of humor. Not only are you a writer…you’re a damn good writer, too. I have read a book by DJ Savernese (sp?)’s father, about an abused and adopted autistic boy who used FC. It was an eye opening read and now I really want to read your book too… I’m going to go look for it. Thanks Jess, too! Thanks Barb.

  17. Barb, you are simply amazing. Your tenasity, is wonderful. Thank you for being you. I am sure many younger siblings will benefit from your example.

  18. Dear barb,i almost never comment. But the one thing that got me crying:that you happily and shamelessly wear velcro”. its been a tough battle where I live getting access to services. But thanks to you I know ill never give up. Ill fight for my son and never stop believing in him. And he knows that. And I’m glad I’ve learnt to celebrate him just as he is, perfection in everything that he does. unconditional in his love. Thank you, again.
    Thank you jess, for all that you do. This year is tough, my son may have no access to a school this year. Why? Because people refuse to see the beautiful mind behind the clumsy body. But like u once said I refuse for him to carry the proof of burden.

  19. Barb, I can’t even describe how you have touched me. You are such a beautiful soul. I can only hope that one day I will be able to hear my son’s thoughts the way that you are heard.

    Jess, thank you for being the conduit. ❤

  20. As a mother of a verbally apraxic daughter I loved Barb’s words
    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.”
    I always wonder what goes on inside my littles head when she is trying so hard to make herself understood. She is making progress but its definitely a marathon and not a sprint 🙂 thank you for some insight! Love it.

  21. thank you all again for your heartfelt comments and jess for this outstanding opportunity to be my part of the solution. please keep listening and know that providing alternative forms of communication for those who do not speak is as important as education gets. allow me to pontificate on more than footwear advice today as i share an excerpt from my book. with u b

    Be patient. What normals perceive as ““waiting”” and ““wasting time,”” we may view as stasis. Like well- seasoned Tibetan monks, we are in no rush. We understand the reality of impermanence. We understand the reality that nothing is as it appears to be. Please, consider here my hypothesis that there are more autistics now because of human evolution. Autism may serve to provide the individual time and space to contemplate and meditate more so than any convent or monastery. Nonverbals ““waste no time”” on vows of silence. We simply live it.

  22. I just got accepted into speech pathology graduate school (a field I chose because it’s a field I feel I can best help serve people on the spectrum in) and now I’m applying for a program within that which would allow me to get moe intensive training on how to help people with autism.

    The application for the program has a question on it. “Identify a question or a concern you feel should be studied or a program that could be made that would enhance the quality of life for individuals with ASD and their families or improve the service delivery system.”

    One of my problems is, of course, I’m only allowed to list one and I have a million! But one of the many that I’ve been thinking about writing is, well, facilitated communication. Because facilitated communication and its use seems to have really changed a lot since the 90s, when all these studies were done, and I keep hearing about all of these beautiful people who use it like Barb and Emma (from Emma’s Hope Book) and Amanda Baggs and I’d like to see more current studies about it.

    BUT I’m scared to write that. Because FC is really controversial in the scientific community, and by controversial I mean seen as not needing more studying and it’s to the point that I’m scared of having my application harmed if I put that down. It’s a competitive program to enter into, too, so that is a real risk I have to weigh.

    I’m thinking about choosing a different one of my million things I’d like to see studied and programs I’d like to see created. But eventually, I really, really do want to do a study on facilitated communication and it’s a pity that it’s treated in such a way that I can’t even be open about my interest in studying it.

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