I might be you. the terrific new book written by Barb Rentenbach and Lois Prislovsky, Ph.D awaited my arrival from our holiday travels. I am only on page 51, but wow(!) what a book! Barb is Autistic. She also happens to be non-speaking and needs support doing almost everything including communicating. Barb uses facilitated communication to type. In her own words she explains, “The deal is, I still can’t talk, but I can type on a keyboard or letter board if someone supports my wobbly hand. The process is called facilitated communication, or “assisted typing.” It is quite controversial, meaning lots of people think it is not really me doing the typing. This infuriates me…”
For those who are dubious about facilitated communication, Barb now types independently requiring just a hand placed gently on her back. In October of last year I went to a presentation given by Barb and Lois. It was riveting, mind-blowing and made me rethink everything I thought I knew, but realized I did not. Barb wears thick glasses and uses an oversized keyboard to type. She has a terrific sense of humor, is incredible honest on all topics including extremely personal ones; this book is a joy to read. She discusses self-injurious behavior, feces smearing, violent outbursts, which her school viewed as baffling and without provocation and yet in the telling, one realizes this was not the case.
Barb eloquently describes the brutality of other human beings who do nothing to temper their contempt for any who appear different. Barb writes, “Let me be brutally honest. Most of the blisteringly painful assaults and provocations happened at school – this school, by children who grew up to be you.” Breathe. Read that again. “… Most of the blisteringly painful assaults and provocations happened at school – this school, by children who grew up to be you.” “You.” Take a breath and let that in. “Children who grew up to be you.”
Confession: I am in second grade. There is a little girl named Louise who wants to be my friend. She has warts covering her hand, the hand that she has extended to me, the hand she wants me to hold, only I will not. I am the new kid. I am well aware of the unspoken rules of the playground. You do not hold Louise’s hand. You do not allow yourself to be seen with Louise. You distance yourself. You play alone if need be. To be seen with Louise is to be like Louise. Flawed, with warts for all to see. Instead I tell everyone I moved from a foreign land and spoke another language, a language only I and the village I have moved from speak. I lie about my family, I lie and say we lived in a field with a house made of straw. I told these lies because I thought they made me seem exotic and fascinating. I lied because, already at the age of seven I believed I was less than, not good enough, destined to be like Louise, with my hand outstretched to others, only to be rejected time and time again.
Barb writes about how she is unable to eat without making a mess, as hard as she tries, her hands do not do as her mind bids them. At lunch a student reports her messy attempts to eat her sandwich and is told by a teacher that she will have to eat somewhere else, away from the others as she is, “making the other children sick.” This book (and again I am only on page 51) made me stop and reflect on my own behavior. Am I really as empathic, compassionate and wonderfully kind as I would have everyone believe? Do I make assumptions? Do I hold beliefs about others because of the way they appear? What are my hidden prejudices? Am I able to admit to them? Who among us can say without hesitation that were our bodies not able to respond in the way our brain and intellect would have us, were we ridiculed and shunned as a result of that disconnect, that we would maintain our composure, would not act out in protest?
“Am I so different from any of you?” Barb asks.
Who grew up to be us.
Yeah… and that’s just in the first 50 pages…
I think I am a lot like Barb. I am messy too and sometimes I cannot eat by myself.
When I was in elementary school, my class was not allowed to eat at the cafeteria because the “other kids did’t like to look at us”
Amy, this made me so sad and angry, but also so grateful to you and Barb for writing about this stuff. It won’t change without your words. Sending you love, Amy. Lots of love…
It makes me sad too but then I think of my life today and I see that I am happy with what I have done.
It is still wrong and it still happens though.
Did you know that my NT friend (you met her) was mocked because she said i am her best friend?
Oh Amy! That’s incredible. I want to say we humans are just unaware, but I think it goes far deeper than that and is more troubling than just unawareness.
I love that these books are hitting the shelves!!!! I just finished ‘I am intelligent’ by Peyton and Diane Goddard…. lets just say I finished the book in two sittings (with lots of deep breaths and walking around in between) What I found to be most fascinating is the interwoven text of the mother describing her childs life when she was younger (bf Peyton had FC) and Peyton fills in how she felt or what was going on in those moments. It taught me sooooooooooooo much, and her often theocentric viewpoint completely blew me away! Dont be turned away by the sub-title (I judged far too quickly). http://www.peytongoddard.com/iamintlgent.html
Loved Peyton’s book! Wrote about it here – https://emmashopebook.com/2012/07/18/i-think-i-finally-understand-but-i-may-still-need-your-help/
And I’m in the middle of interviewing her for Part II HuffPo. Here’s the link to part I – http://www.huffingtonpost.com/ariane-zurcher/non-speaking-autism_b_2124531.html
I too had to read it, then walk around, then read some more, take a walk, read, put down…. incredible.
Even though bullying awareness has increased in recent years, it continues unabated and is particularly brutal with autistic and other disabled people. As Emma grows older, her unusual behaviors and manner of speech draw more and more attention, particularly since she is so tall for her age — she turns 11 in two weeks. Every Sunday, Emma and I take the subway to the Museum of Natural History, because it’s cheaper than a cab and Emma likes the train. And every week I grow more anxious, knowing that Emma is going to get more “what’s wrong with that kid?” stares from the other passengers.
I’m Irish-Amercan, and the stereotype of the “Fightin’ Irish” is an apple that falls very close to my tree. I’ve come a long way with my anger, but even though my fuse has grown longer over the years, it still doesn’t take mucht to make my blood boil. So I sit and seethe as people stare at Emma and whisper to each other and and laugh and I just want to say, “What are you looking at? What’s so funny?” But I sit and stew in my juices and keep my mouth shut (most of the time, I’m still not above an outburst like that if someone acts particularly heinous to Emma).
Yesterday, a woman got on the train and stood next to where Emma was seated, gripping the pole right near her face. The woman had fingernails that were 4″ long, painted silver, with feathery designs painted on the tips. Emma was enthralled. “Long fingernails!” she said excitedly, and began to touch them immediately. The woman smiled like she was used to such a reaction, and allowed Emma to stroke her nails, while I vacillated between being charmed and amused by Emma’s adorable reaction, and being embarrassed by it, which made me feel ashamed of myself. Emma couldn’t stop talking about the fingernails and touching them, smiling at the lady and me the whole time, while everyone nearby stared at her and a few people smiled too.
“One long fingernail, two long fingernail, three long fingernail…” Emma counted, holding or stroking each nail all the way up to ten. The woman never lost her patience with Emma or became annoyed, or looked at her funny — perhaps, because she, like Emma, was used to people staring at her for being different. The smiles and warm looks between the woman and Emma continued for three subway stops, while the other people smiled sometimes or stared and acted uncomfortable (most of the time). I kept trying to get Emma to stop touching the lady’s nails, afraid that she would grow irritated with Emma’s intrusiveness. But she never complained, and I gave up trying to control Emma because it was useless anyway — she was so enchanted by those long nails that I would have had to gag and handcuff her to get her to stop.
When we got out of the car, Emma said “Bye Bye fingernails. Bye bye lady fingernails,” waving happily and blowing kisses. It was lovely. We talked for awhile afterwards about how long her fingernails were on the way to the museum.
I consider myself an oddball, an outsider. I pride myself on having an “I don’t give an F about what anybody thinks” attitude of non-conformist independence. And yet…I do care. I don’t want Emma to be laughted at, or stared at, or whispered about, or bullied. She is an angel. She has no shame. No embarrassment. She is herself. She is beautiful beyond measure.
So what does it say about me to be embarrassed in the presence of an angel? My only answer is: I still have a long way to go…and grow. And Emma remains my best teacher.
I’m so glad the woman was kind to Emma. Truthfully I would want to feel her fingernails too. I mean, seriously, who wouldn’t want to touch them?
As far as what does it say.. well it says you’re human for one thing and it says you’ve been brought up in a society that beats this idea of being different is “bad” into us at an early age. But what does it say that you admit it? What does it say that you felt these things and didn’t act on them? What does it say that not only did you feel these things, admit that you felt them, but then wrote about it here? What does all of that say? It says to me that you’re the man I fell in love with because I saw immediately how kind and honest and good you are. I saw that you had a dark past but rather than give in to it, you have sought to rise above it one small step at a time every single day of your life. It says you are courageous and it says that you are one of the people who isn’t content to just react without thinking, but one of those who attempts to do things differently.
That’s what it says to me.
Thanks for flagging! Ordered.
What I thought about as I read this was, “We are all on a journey.” What I have learned is that all my prior expectations for what I thought should be, well, Teddy just blew all that up. He made me step out of those preconceived notions, he made me rewrite all my scripts. I simply had no choice. I guess we must remember that maybe some people haven’t had the beautiful opportunities our autistic children have given us, so we need to help them see what we have seen, teach them to know what we know, and hopefully through those efforts we will spread love, kindness, tolerance and compassion.
Yes! Yes! Yes! and Yes!! (God I hope that didn’t sound too Meg Ryanish…) 😉
Ouch. Sounds like something I will pick up quickly, despite how painful the self-reflection may prove to be. I’m reminded often that I still have so much to learn.
With the self reflection there will be smiles too as Barb has a great sense of humor! So this was me – read a paragraph, self reflect, feel ill, read a paragraph, laugh, read another paragraph self reflect, feel ill, but not nearly as awful as the first time, read, smile, read laugh, read…. 🙂
I’ve avoided reading all the books you’ve recommended to me (although I have read each and every blog at some point) because it just pains me to read about it. It pains me to realize how indifferent that *I* – me, her OWN MOTHER, have been towards her. The one who is supposed to protect her and love her more than anything in the world has probably said the most mean and spiteful things in front of her, without even meaning too, not even realizing that she probably understands and is devestated beyond measure. The guilt I feel about it torments me daily, and when I read things like this, it compounds it even more. So I avoid it because I’m trying so very hard to change my ways, that reading it is like salt on a wound that is still trying to scab over.
Picking up on Richard’s comment, I know exactly how he feels. Being embearassed by our kids’ behavoir is OUR problem, not theirs. I don’t know if the difference is the people where we live, or just the fact that Risa is so much more obviously affected, but I really don’t get that many rude comments. Even when she is freaking out having one of her meltdowns, people can usually figure out that she isn’t like other kids. In her case, it’s painfully obvious, but….it is what it is. And I give them the “go ahead, say something to me, I dare you” look, and people keep their mouth shut.
In the past, depending on my mood or the situation, I might or might not explain my daughter’s issues to a complete stranger. But I’ve found that when I do, people are more and more understanding and empathetic. When she was little, I’d get the “how awful, I don’t know how you do it” reactions. Now, I get more of “yes, I understand. My niece/nephew/fill-in-the-blank kid I know has autism”. And we’ll go on to discuss things that the kids they know say or do, things that have helped the, etc.
I’d like to think that people in general are kindhearted, but I know that’s naive. People say terribly cruel things to eachother every day, and behave in terrible ways, especially towards anyone who is different.
My seven year old’s words and attitude sum it up nicely. He tells everyone that “his sister is autistic and you might not understand her or how she acts. But that’s ok. She’s just different, is all”. And aren’t we all different in our own ways? Wouldn’t the world be terribly boring if we were all the same?
On another note, Risa has an appointment this afternoon with Dr. I Want to Punch in the Face. I’ll let you know how it goes! 😉
You are doing the right thing, the right way.
You are making sure both of you are in the right place before you can read the books.
And your other child is awesome too!
Angie ⬆ What Amy said.
Thanks, Amy. Sometimes I really need to hear that and I certainly consider you to be the voice of authority!
Ariane, sorry for misbehaving! We all gotta be rebellious sometimes! 😉
Risa’s appt today was ok. (Dr’s appts always suck!) But the big news is we are going to wean her off the Risperdal and Sertraline, and try her on Abilify. It’ll take a few weeks to get her off these meds, only to turn right around and put her on something else. (When we tried weaning her off the Risperdal with nothing to replace it, she got so violent and hurting herself we immediately put her back on.)
He also wholeheartedly agrees she has scoliosis. 😦 We need to get a complete set of xrays to find out exactly what we’re dealing with and to plot a course of action.
Oh Angie (have I told you I’m always tempted to call you Ang? Because you know, we’re buddies and everything and because I feel we know each other well enough…)
I know nothing about these meds, but it sounds scary and anxiety causing and then add the scoliosis, which you’ve kind of known and thought but no one listened to you for years… I’m really sorry. I wish I could say something brilliant or brilliantly funny at least…
Please know I’m thinking of you and sending love to all of you.
Yeah – I was completely and utterly overwhelmed when we thought she was “just” autistic. This whole atypical Rett syndrome has thrown me for a loop. I just got what I thought was going to be an “info packet” from the IRSF, and it’s like a 500 page textbook! Seriously, no kidding. This is an entirely new set of issues now.
Ang is fine….my family calls me Ang all the time! 😉
Oh and one more thing – *Gasp!* You mean you haven’t dutifully gone out and bought every single book I’ve recommended?! *Shakes head from side to side*
One thing this reminds me of is the hierarchy of disability that exists among some, either overtly or covertly or perhaps subconsciously, of people more able to pass for normal distancing themselves from people less able to pass for normal.
At one of the schools I attended, I did not take the same gym tests as the other kids. For reasons that were never explained to me or even acknowledged, I was given separate, easier tests, along with a girl with Down Syndrome, whose name I don’t even remember. I do know that she was in a “special” class the rest of the time and never interacted with us otherwise. And I was mortified, humiliated, to be singled out like that, grouped in with the disabled girl. I mean, of course *she* had to be tested separately; she was disabled. I never questioned that assumption… or wondered how she felt about it.. or how she felt about me, for that matter. It simply never occurred to me to think of the matter from her point of view (and this was at a time when I was putting great effort and emphasis into trying to understand the points of view of others). I regret that. I regret that a lot.
*Nods head* I completely relate to the feelings you describe.
I would like to say that I am a better person than the examples given in this book but really I am not. Instead of a hand covered in warts, this one guy who was my contemporary only had four fingers on his hands. This always got to me and I never wanted to shake his hands or high-five him. It wasn’t that I was worried about what others would think as others were much more accepting. Was it an irrational fear that it might be contagious, I don’t know. Yet It always bothered me and it really bothers me that it bothered me.
On a completely different subject, do you and Richard prefer the terminology that you are parents of a child who is autistic or parents of an autistic child. Aspergers Manitoba sent out a survey about whether they should change their name and two articles about this. I was just wondering what your take was on it.
I haven’t asked Richard so I won’t speak for him, but I don’t care which terminology is used. 🙂
Yes! Yes!! Yes!!! (Oooohhh… and I’ll take my dressing on the side please!)
I tell anyone who will listen (not too many, I’m afraid), that—
“There’s only one opinion of you in the whole wide world that matters a damn—and that one is yours.”
I like this and LOVE the photo of your dog (um… or is that you? Wait where are my glasses?) 😉
Thanks, Ariane, for making us aware of another book written by one who communicates like Kimberly. It is amazing how all these book are coming out now. Kimberly wants to order them all. 🙂 We have read “I Am in Here”, and are awaiting the arrival of “Karly’s Voice”. Now, she wants to order “I Might Be You” and “I Am Intelligent”. Kim says, “When all are read, I will give my reviews.” 🙂
Oh I cannot wait to hear what Kimberly has to say! I’ve read all that you list. Here’s another to add to Kimberly’s list – Loud Hands Autistic People, Speaking – it’s an anthology and wow, is it fantastic. I just finished interviewing Julia Bascom, the creator of the anthology and the Loud Hands Project and submitted to HuffPo. I’ll put a link on this blog to the interview when it’s been published and on Facebook.
Ariane – have you read beyond page 51 yet? I just did and let me state on this public forum that what Barb wrote on page 54 that her “first successful flight was with Dad” is consistent with information from my own son Ben. Beyond that, I think I should send you an email, including finding out how you are doing advising icare4autism – Arthur Golden of Jerusalem Israel
Hi Arthur, I have, in fact, finished the book as of last night. It is fantastic! I have nothing to report regarding Icare…
Reblogged this on FREELANCE CONSULTANTS and commented:
If anyone has knowledge on this subject I would love to hear from you…
Happy to send you some great links regarding FC, if that’s what you’re in fact referring to. It is VERY controversial with those who oppose it becoming quite rabid in their opinions. I even wrote a whole post about someone who viciously attacked me publicly. There are a few very vocal people who appear to have made a career for themselves, insisting that FC is a hoax and those who say otherwise are immoral. However I can say with certainty I have witnessed too many who learned to type using FC and have gone on to typing independently, Barb (the author of the book) being but one of them.
Thank you for sharing that with me… I look forward to reading more of your writing – keep up the good work…
Thanks so much!
@ Richard. So much with you regards your concerns as to how a world of others might perceive and respond to Emma. Yet I feel that everything there is already taken care of. Emma is beautiful, and that apparent even over internet distance. That beauty is the flowering of a developing had across a parenting. The beauty of the child mirrors the beauty of a parenting. That parenting, sees the world as it is, remains open to that seeing of the world. Emma already knows that world as her parents know it. Knows its ambivalences. Knows that beauty in being human is had across remaining open to the world’s ambivalences. It’s another one of these presumed competence challenges, to see that Emma is just as strong as her parents when it comes to being beautiful in an ambivalent world, just as strong as her parents in drawing beauty from out of that ambivalence.
So I’m just repeating what you said in your last few sentences. Emma’s going to be okay. Going to be more than okay. Angel coming through.