Last night we returned from the Institute on Communication and Inclusion’s facilitated communication conference in Syracuse. I cannot quote Em on this blog any more. Going forward I will write about my reactions, thoughts and words. And while I feel a little mixed about this decision because I think her words are proving to be far more eloquent and astonishing than mine, it is the only decision I can make given what she is saying and what we are learning. Having said that, the conference was all I’d hoped for and so much more. We met many wonderful families, other children Em’s age and younger, adults, young adults and teenagers, all of whom communicate through FC and are in varying stages of becoming independent. A number of the presenters had gained full independence and had gone on to get their undergraduate and graduate degrees.
For those of you unfamiliar with FC, it is a method of support, which provides resistance to the typer, in Em’s case to help her slow down and not impulsively hit whatever key is closest, or to perseverate or write some of her default scripts. A facilitator is never to direct the typer’s hand, but is there to offer emotional, physical and, as needed, verbal support, to help establish a rhythm so that the typer is free to communicate in ways they are not able to verbally. Ideally this support is then faded over time allowing the typer to communicate independently. Learning to facilitate properly and well is not simple nor is it easy, though it looks ridiculously easy when watching someone who’s been doing it for more than a few decades. It requires patience, practice, confidence (in both yourself and in the person you are facilitating) and calm.
As a non Autistic, fully speaking person who can both speak and communicate through writing, relatively easily, it is often difficult to understand what the process is like for those who cannot. It is easy to view someone who is non-speaking, who has fine and gross motor challenges, who may script or make vocal, seemingly nonsensical utterances, as a person who is the sum total of what we see. If that same person then displays insights, a brilliance and clarity regarding their surroundings, thoughts and life, a sensitivity and intensity of feelings for themselves and those around them, our limited non autistic brains have trouble making sense of what may seem to us to be a disconnect. However it is imperative that we not remain locked inside our limiting assumptions. It is imperative that we open our minds to the idea that not only is there far more going on than we might assume, but that all human beings have the desire to communicate and connect with other human beings, despite what we think or how we interpret another’s behavior.
I cannot do the conference justice in a single post or even several posts. Far too much was covered, there were too many moments of discovery, insights, moments when it all began to make sense and fall into place, but I will say this – if there was one thing, just one thing I wish someone had said to me and I could have done when we first got Em’s diagnosis, it would have been this, ”Believe in her intelligence.” I am not talking about wishful thinking or believing in fairy tales and magical potions or waking up to a child who is able to verbally express themselves with power and poignancy. I am talking about believing in her ability to understand and articulate far more than I was able to see or acknowledge and finding ways to help her do so. This is a glitch in my specific neurology, not hers. This is the detrimental glitch in most non Autistic, speaking people’s neurology. We have a terrible time believing that without language there can be a deep, complex and layered thinking process that is often poetic and nothing short of mind blowing. Without suspending our entrenched beliefs about what we think is and isn’t possible our children will have a difficult, if not impossible, time “proving” us wrong because they will not be given the tools they need to do so.
I do not feel particularly articulate at the moment and I’m extremely emotional. I am holding so many opposing emotions at once. I am angry, furious at how autism and autistic people are depicted and talked about. I am in a state of near apoplectic outrage at the presumptions that currently exist regarding this underserved, largely segregated population. I feel furious with the limited thinking, the prejudice, the hatred and cruelty routinely shown to autistic people. And yet, I am overwhelmed with gratitude and love for those who continue to speak out, who continue to fight the ingrained beliefs so that my daughter and those who are right behind her might have a better life than they currently have.
Ahh Ariane, I am sending you a big hug. You are a great Mom and such a beacon for so many out there. Words do fail me, I am so overwhelmed with your journey. Thank you all for who you are,
*hugs*
Ariane – THANK you. Your experience sounds similar to the experience I had when attending a similar conference last summer with Miriam. But this is such a marvelously worded post that I plan to share it widely with all her teaching team and beyond. Again, thank you for sharing your journey, and blessings to you all!
Thank you so much! Always good to hear from you.
I will miss Emma’s words, but I understand, of course. If she ever decides to write a blog, I’ll be reading!
Last night I dreamt that she had started one.
Ariane- wonderful post. All my thoughts exactly. Loved meeting you and Emma this weekend. Hopefully we will see you again at the summer institute. I hope Emma’s typing technique continues to progress.
Thank you Amy. Wonderful to meet all of you. We will most definitely be there this summer!
Ariane, is it too early in our relationship to say
I LOVE YOU!!!
Awesome post. I thank you, Bella thanks you, and Bas thanks you most heartily.
Many, many hugs,
Renee
Aw… Renee…💛 it can’t ever be too early can it?
Sweet Ariane, thank you, again, for all you do. Not feeling articulate? Please let your emotions reign a bit, as we eagerly wait your next move in this time of change. You are growing, and are helping change the perception of autism with your very loving, articulate gifts. Process, darling, process❤. Believe in your daughter’s intellegence, and believe in the value of the many, many different kinds of intellegence there are. Believe that all are valuable, unreplacable, sacred souls, even those without measurable, reachable intellegence. Sending love to you on this journey.
Sending you love Chou Chou!
Oh happy day! It’s like you opened a gate into the most magnificent garden and that garden is communicating with Emma! Enjoy the moment, soak it in and swim in it as if it were a pool You are so very inspiring and I am so happy for you all!
Thank you. We are. We are!
Life&Ink’s post reminded me of that book I loved as a child “The Secret Garden” such an apt metaphor for what is going on today with autistics and non-autistics. There is indeed a “secret garden” whose gate is not locked, but only closed and we verbals need to gently push it open to reveal all the beauty within.
I love you, too, darling daughter, and granddaughter..let’s hold hands and walk into that magnificent garden together.
Mom/Granma
Sending love, Mom! Very exciting times…
I now have a new mantra: A and NA where A=autistic and NA=non-autistic but in my mantra they = available vs non-available. Autistics ARE available, but we non-autistics are not available to change, new ways of thinking about what we think we KNOW, and openness to gardens we have never walked in.
I too will miss reading Emma’s comments on here, but you’ve got to do what you think best, and if Emma wants to keep her insights private to your family and her acquaintances for the present, all the more power to her.
I would like to learn more about the conference and how it went, but I can certainly understand the lact of ability to articulate, especially when overwhelmed with emotion. I look forward to reading what you can write about it when you can do so.
{Hugs} to you, Emma, Richard and Nic.
Thank you so much. I’ll post more about the conference tomorrow. We are all a little exhausted!
I wanted to badly to attend this conference, I so desperately want to learn more and become a facilitator.
CJ – it is hard work and not at all easy, but wow, what a wonderful thing to be able to do! The conference was incredible. Just fantastic!
This sounds like a turning point for you…good news I think, once the turmoil inside settles. Thank you for sharing.
Such a great way to describe what we are all feeling. “…once the turmoil inside settles.” Yes. Exactly.
Ariane, thank you for believing in autistics. I do love you for that.
To all the people who say autistics are in their own world:
Contrary to popular belief autistics are not in their own world. The fact is that we all share the same world. My experience of our shared world is much more intense than yours seems to be. My sensory system is often overwhelmed by this. In addition, I feel your emotions more than I can tolerate. It shuts down my system. I know you have made up many stories about this and about other behaviors of mine generated by my autism neurology. But please stop saying that I am in my own world. Your words create a dividing line and move me over to the “non-human” side. It is hurtful and accomplishes nothing positive. Thanks for reading my words.
Judy, I really appreciate your bringing this up because this whole idea of people being in “their own world” is a confusing one and I think hard for many to understand why this thinking is harmful.
Thank you so much for sharing these thoughts. I have often tried to give parents permission to believe in their kids – and especially in their intelligence. I have been accused of planting false hopes, but in the end I do think the usual approach of false despair is far more dangerous.
I agree. I completely agree.
Can you explain/clarify why you can no longer put her words on here. Is it around her consent and desire for privacy? ie has she asked that they not be shared or have you realised you dont have her consent to do so? just trying to understand and your explanation/decision not clear to me thanks
It’s a really good question Michele. This is something I’ve been grappling with for many months now – is it okay for me to quote my child, show images of my child, at what point am I divulging too much information about someone who has not given me their explicit permission? Em’s older brother has made it clear that he does not appreciate being quoted and does not want his photograph on this blog or on Facebook or twitter. However, Em has not voiced this and has even stated that she is okay if I post a photograph or quoted her. What has changed is our realization that though she has given her verbal okay to these questions, she has not given us typed permission. Until she gives me written permission, I cannot assume her verbal reply is indicative of what she really wants. For someone like my daughter, where speech is often scripted and echolaic, I need to be sure I have a more thoughtful typed response before proceeding. It may turn out that she is fine with it, but until I know for sure, I cannot take that chance.
I sometimes think autistic people are less in their own world than NT people are. We don’t really have the luxury of being in our own world past a certain age if we get to the point where society decides to expect anythng of us. When I go out into the world I have to cope with all my own inner turmoil and stress, whatever sensory issues the situation is causing and be very attuned to the people all around me who might at any moment make things so much worse. Plus there is that constant background analysis of what all of it means. Is any of what I see something I should be emulating and so on.
What I see these days when I go into the world are huge groups of people plugged entirely into their phones and tablets.I sound like a curmudgeon to say it but while I always objected to the way little and own usually go together when talking about autistic worlds (there is nothing little about my world – it’s more fully fledged than this planet I assure you) this choice to focus entirely on a screen when it is a choice seems odd to me.
I sometimes had to keep my face in a book or have a calculator handy to get from point A to point B without a meltdown but that surely cannot be the case for every single person on the busses and busstops and most mindblowingly to me even in social situations who are so focussed on their phone. I suppose it being so hard for me to be among people in the first place it annoys me even more when they then are not fully there when it is someone I actually know.
Richard and I are guilty of checking our emails while out together. We have even texted each other when we could have easily gotten up and found the other in an adjoining room. It is impulsive and, in my case anyway, compulsive, that need to “do” as opposed to just being present. It seems more and more we humans are less in the world and more in a virtual world. However I do not do this while out with others or over dinner.
The idea that Autistic people are more prone to being silent or retreating is very much an observation coming from those who are not Autistic and who (I believe) have little understanding of the intense issues of language and sensory overwhelm and the tremendous anxiety that can cause.
Congrats on your amazing weekend! Do they mention the best way to start? I know Soma talks about having the child learn to point to make a choice between 2 items…..I struggle with learning myself what the best way to teach Brett to spell is…..I am confident in saying that he can spell because he knows his letters and attempts to read things outloud with what verbal abilities he has. He has also done some spelling programs in ABA and caught on quickly. I am not sure 100% on the best way to assist him in crossing on to typing words out and showing us he can…if that makes sense???!!! They currently show him things to type out…sentences…to learn to look for the letters and memorize the keyboard etc..I know you said you have seen little kids doing FC so I am curious how they helped kids if they were non-verbal that they could just spell out on a keyboard what they are thinking. I very much want to help Brett in anyway we can to begin to learn how. I wish I lived closer to NY. I looked in WI and didn’t find my info on FC.
I will keep checking! Thanks for any input you have! 
Becky~
Becky – if Brett can isolate his index finger and accurately point, while also able to look at the typed word or image, there is something called “set work.” It is the way in which one can begin with a new typer and facilitator. Often this means beginning with yes/no questions, fill in type questions, multiple choice. An example of this would be to discuss Little Red Riding Hood. A question posed could be – Is the wolf a villain or hero? But this type of set work is something one does after the pointing has been well established.
I am very very new to all of this, and I’m hoping I have described this correctly. But the ICI website has a wealth of information that one can read and I encourage you to look around. http://soe.syr.edu/centers_institutes/institute_communication_inclusion/about_the_ici/FacilitatorTraining.aspx
Becky,
Are you currently living in Wisconsin? Anywhere near Madison?
YES!!!!!
Thanks so much Ariane!!! I appreciate it!!
I think so many people have trouble with silence that the concept a person could be silent and still enough in the world to be present is hard for them. I don’t really know. I just know even when I am at my worst and the world goes spinning right away (which hasn’t made me in a small world it’s just meant that the actual physical one and what’s going on is too much) and I can’t speak the duration in which I cannot hear tends to be short. Sometimes there is hearing without comprehension in those really bad times but that track can be replayed later for me. So fully in the world or not the world is being recorded.
“fully in the world or not the world is being recorded.” I wonder if this isn’t a common misperception among non Autistics. This assumption that it isn’t, because there is no perceivable sign from a non Autistic point of view.
I am such a spammer but what you said about the difficulty understanding processing makes a lot of sense. I keep having to remind people that it takes me time to make sense of an experience so while they mean to be encouraging wanting me to speak up about something I am not done thinking about is hard and tends to have the opposite impact.
We had what might be considered a difficult Torah study last month in that I was the only scholar so my rabbi chose to depart from the parsha and have me experience some other texts. It gave me a lot to think about but nothing to say and his well meaning wife kept mistaking that for my not following it at first. Our rabbi assured her that wasn’t the case but I could sense it was a struggle to get why a person might just want to think rather than burst forth with whatever came to mind even though that very siitting with an experience or some new knowledge does get cited as a goal if you actually do it people get confused.
Sooooo awesome! I had a very similar myriad of emotions after attending the same FC workshop in the fall of 2011. Changed our lives dramatically. Lindsey was barely typing with me then and a year and a half later she has made remarkable progress…it should I say I have made the progress! She has gone from being considered low-functioning with no academic opportunities at school to being on diploma track and God-willing in 5 years she will achieve her dream of graduating high school and heading to college to be a writer! Keep sharing your story! Love to read and share with others! God bless you all!
Oh how I love stories like yours!! Thank you for sharing this. You cannot repeat this enough. Seriously. Every single day, you could copy and paste this into the comments section and every day I would read it and feel such indescribably joy!
Yes. This.
❤
I admit, I do share with family/friends on my personal fb the things Mackie says, and photos of the kids – but I’ve left them largely out of anything I put out there in my writing persona. What you’ve said does bring that more to mind as something we all ought to consider – as we share our experiences of being parents – once it’s out there, it’s out there. That said, I think it’s a good and necessary thing for the everyday person to see a full “quilt” of a family like each of ours. By letting everyone see that our families are pretty much just like theirs, it DOES break down those stereotypes.
One thing that everybody does and I haven’t yet figured out how to find an alternative or a means to stop it – everybody talking about Mackie in front of him. I’m sure we all have that experience…and even though I find myself doing it, it’s normally to remind everybody that he can HEAR YOU! He knows what’s going on, even if he seems like he’s only interested in what he’s doing – I sort of picture him functioning like a satellite array, receiving everything from everywhere –
I’d like to consider the FC thing a little more – I think Mackie has the ability to mostly sit and type on his own – what he doesn’t seem to realize yet is that people use it for more than playing math games or watching youtube – once he figures out that he can tell us things or express himself in general…look out!
You know I have grappled with my increasing discomfort regarding putting my daughter’s image and words on this blog for months now. She is a performer. It is the thing she loves doing. Give her a microphone and she will grab it! It may well be that she will type that she’s okay with some of what she says and does, but until I know that for sure, I don’t want her years from now telling me how she really resented how I spoke of her to the world, put her image out there without her actual involvement.
The reason we approached FC was because Em’s language was not reliable and we have not been able to reach a deeper level of complexity or conversation. FC is showing us that this is not only a realistic goal, but an achievable one!
Your description of Mackie is very interesting to me. I have found that most of my older FC users (in their late 20′s or 30′s) are not comfortable or independent with a computer or iPad. Most of my younger friends have developed some very impressive computer skills and take to the iPad almost immediately. But even these young computer whizzes still seem to need the support of a facilitator in order to use typing to express themselves. They can play games, find YouTube videos they like, or type movie dialog, but unless I am providing support we don’t really get what they are thinking and feeling. It is quite a challenge to figure all this out – but oh, so exciting!
charbfc- my email is sbeb2000@hotmail.com if you ever have a chance to email me! I would love to hear from you! Thanks to you too Ariane!!! As always, opening all of these doors for us! Blessings~
I hope you two are able to connect!
Me too. We will work on it!
I know exactly what you mean. Every bit of it. My son’s life is his. My writing is about my process. He has always been way more capable than being given credit for. And we must change the world. Together.
“…we must change the world. Together.” Yes! Yes, we will.
Our journey has been very similar and your explanation and emotion at the end of this exchange rings so true for me. The messages we recieved early in our journey, where wrong and created worry. We love all our children so much! We therefore made a consious effort to move away from these attitudes and beliefs and surround ourselves with people experienced in the notion of presumed competence that can teach us ways to support our son to communicate at his best and to live an inclusive, fun filled, meaningful life. Celebrate life! <3
Ariane, I am so glad you got to go to the conference. For some reason, I thought it was this summer. Wish I could have been there and met you. I appreciate you honoring Emma by no longer quoting her unless she gives written permission. It was a good reminder to me to get Kim’s permission before posting things about her. I do hope in time Emma gives that written permission (or starts her own blog) as I do enjoying hearing from/about her.