As I was downloading a couple of photographs just now, I found the video we took of Ari and Emma’s presentation Wednesday evening. Intact. We’ve got it all!! Woot! Woot! But before I put the video on here, I have to get permission from Ari and Emma. So let me do that and then, if both agree, you should be able to view it next week. I’m hoping by Monday.
In the meantime, there’s something else I want to talk about. And that is the experience of hearing your child’s thoughts and opinions, interests, questions, and desires, when you weren’t sure you would ever be able to do so. Now this is a little loaded because there are some who believe it’s wrong to suggest all Autistic people will be able to express themselves. Those people believe there are some who cannot and it is creating false hope to suggest otherwise. There are still others who feel that communication comes in myriad forms and we must stop insisting one way (speech) is the only way. They believe we should honor all methods of communication, whether that’s through words, sounds, body language, or silence and using our other senses. Those people believe, and I am one of them, that we all have the wish to connect with our fellow humans in some capacity, at least some of the time, and it is incumbent upon all of us to figure out how we can support each other so that all have the opportunity to do so.
When Emma first wrote an unexpected sentence, described in detail ‘here‘ it was the beginning of what would turn out to be nothing short of an odyssey for all of us. From that moment, on November 25th, 2012, we have experienced what can only be described as a dream-like adventure with Emma leading the way. The degree to which she was underestimated by almost everyone who met her, including us, is beyond my ability to describe. I say “almost” because there were a few people who met her who were not fooled. It is interesting to note that those few were Autistic. My friend Ibby was the first and we’ve written a little about this in two pieces she and I wrote featured in Parenting Autistic Children With Love and Acceptance’s first addition of their terrific new magazine, which you can read ‘here‘ (It begins with a piece by Ibby on page 17 and then ends with my companion piece beginning on page 21.) By the way, the entire magazine is filled with wonderful pieces by Beth Ryan, Nick Walker, Cynthia Kim, Amy Sequenzia, Renee Salas, Sharon davenport, Alyssa Hillary, Kimberly F. Steiner, Juniper Russo, Amy Caraballo, Jane Strauss, Kelly Green, Steve Summers, Leslie Rice, Zita Dube-Lockhart, Leah Kelley, Lei Wiley Mydske and others who donated their art work.
When someone sees Emma, who now communicates by pointing to letters on a letter board, (which is different from when she wrote that first sentence a year and a half ago) I sometimes hear the following comments – “I just don’t see how this can translate to a school setting” or “It takes too long” or “economically it’s not feasible because it requires a one on one ratio that most schools won’t be able to pay for.” Except here’s the thing… The way Emma communicates is tailored for an academic setting. Just as in any classroom, a student is called upon to give an answer or thought, about any given topic, so could Emma be given the opportunity. All it requires is for the teacher to say, “Emma when you’re ready just signal and you’ll be next.” The aide can then raise their hand when Emma has finished writing. This would also deal with the comment that it “takes too long” and I’ll just add that our society’s increasing desire, that everything be reduced to a sound bite, should be tempered, and having someone like Emma in a classroom, would be beneficial to all, by the very fact that we all need to slow the f*ck down.
As far as what this means economically, I argue that there is a great deal of money being spent on a great many things that are NOT working. Things like trainings for methods that do not produce the type of complex and nuanced language we are seeing. How do we put a price on communication? How can anyone suggest that having someone who was thought to be unable, or worse, incapable of expressing their thoughts, not be supported to do so because of the cost associated with it? How can any of us seriously object? And yet… people do all the time. And it catches me by surprise every, single time when they do.
To see your child express their thoughts, as we have had the opportunity to do, is beyond anything I’ve ever experienced. It has changed everything. Literally everything. Some people have said to me, “Oh you’re so patient.” No. I’m not. When Emma is writing something, I am filled with eager anticipation for what she’ll say. Patience? No. Ecstatic is a better way to describe my feelings as I witness the outpouring of her words.
How we engage with our daughter, how we speak to her, what we think and now believe, all of it has dramatically changed as a direct result of her communication. I haven’t even begun to discuss what this has meant to Emma. And here’s just one more massive difference between then and now. Instead of me guessing or making assumptions about what this means to Emma, she can now tell us.
“I want to tell you that I am capable. Daring massively, eager to prove my intelligence, I will work tirelessly so that Autistic children younger than me won’t be doubted the way I am.” By Emma Zurcher-Long
How does anyone put a price tag on this?
Wonderful piece, (((Ariane))). How can a price be put on communication? For me it is the most defining characteristic of our species in whatever form it takes.
I wonder if it’s not, yet one more instance of people not fully understanding or appreciating what it might be like to think, but not be able to have what is said match what is thought. Also, I don’t know of any parent of a child who cannot speak, who would argue that any cost is “too much” for their child to be able to communicate what is in their mind.
That is an experience that most people are lucky enough to never know. You have experienced this through your empathy and connexion with Emma and you are both doing a fantastic job of sharing and explaining this to a wider audience.
This is the part that had the greatest impact on me: witnessing Emma communicate her thoughts. An almost unbearably tense mix of excitement and impatience, like watching a beautiful butterfly slowly emerge from its chrysalis. And equally awe-inspiring.
Hell yes! All the way around!
“When someone sees Emma, who now communicates by pointing to letters on a letter board, (which is different from when she wrote that first sentence a year and a half ago) I sometimes hear the following comments – “I just don’t see how this can translate to a school setting” or “It takes too long” or ”economically it’s not feasible because it requires a one on one ratio that most schools won’t be able to pay for.”
To all of the hand-wringers I say: What will it cost the children and adults whose voices are never heard for lack of “funding”? What will it cost all of us to be deprived of these wonderful minds?
Well said. And it makes simple sense from a hard nosed economic viewpoint too; you put X money in now to the education system in developing communications for a person, and you save many times that X down the track at the welfare and health system level when a person who is able to communicate well is able to be more independent and requires less support as an adult.
I wholeheartedly agree!!
I hope you can show us the video; I am eager to see it!
It’s a shame I have such a hard time interacting with lots of other people because it means I missed knowing about the magazine. I would have donated something.
That’s on topic, because I have my own problems with communication. Different from Emma’s challenges, but also alienating. I feel so out of step with the entire world and so lonely. There is no place of balance for me in this world, so I feel like I’m sitting outside of everything, looking in through the window at everyone else, like Nick, the narrator of The Great Gatsby describes himself. Like Fitzgerald’s scene, I’m standing alone in the snow, watching everyone else gathered around the fire together without me.
I wonder if other Autistics feel this way or if the Autistic community takes away those feelings for everyone else? Because of the sensitivities I have that make socializing challenging, I still feel like I’m out in the snow, even after over a decade in Autistic community. It’s no one’s fault but it will never go away — the challenges of my neurological wiring mean I will live my whole life out here on the edge of everything. My challenge is to learn to live happy out here.
I hope Emma is feeling more on the inside of things these days, thanks to all the work she and those around her are doing to build bridges of communication.
We just have to do a little editing because of some weird glitch that happened a few times where the video pauses before continuing. Richard says he can edit it out, so we’re shooting for a Monday post with it!
((((Unstrangemind)))) I love you.
Unstrangemind – All love! It is every other month, the mag, so do please contribute to the next issue! ❤ We figured most people found out about it by seeing the first one come out! Love, Ib PS You too, Ariane's other lovely readers!
Thank you for expressing the feelings so many of us RPM and alternative communicator families are experiencing. I would like a serious behavior modification plan put in place for these “educators”.
Ha! Gummy Bear anyone?
Wow – I am so forwarding this to my son’s team at school. He personally doesn’t need this level of assistance, but this post may inspire the team in a direction they might not be aware they can go with other kids who are facing greater communication challenges. Thanks!
I think/hope showing respect for all people no matter how they look/think/communicate is contagious and something everyone would like to see their children encouraged to do in all settings, but particularly in schools. I know I would!
The team is really receptive and respectful. I asked if I was being annoying by sending stuff like this and the reaction was “NO, what you’re sending is great. We can’t read everything, and you’re seeing things from a different perspective. Keep sending”. Best reaction I could have hoped for 🙂
Good point, Ariane! One of many…but is this actually more expensive than that thing they sell at 40 hours per week outside school hours and so many of us speak out against it? And Richard nailed it too, in case it is…
Well, exactly. And their argument to that is – well that way is scientifically proven and this other way is not, even though irregardless of their so called “science” the other way does not encourage the type of thinking and expression of thought in primarily non-speaking people the way Emma’s way is. So… yeah.
Sadly, many professionals (if not most) still do believe that these children are just not capable of that level of communication. I’m working with Sophie on my own, while in preschool she is doing a play-based approach, OT and such. Funnily I was reading “Ido in Autismland” this weekend and reading about him describing swinging on various swings as part of “sensory integration” made me laugh out loud- I do wonder how much we pay for “sensory integration” vs communication and really, what is the more important investment of the two.
We still, to this day, do not know how to help Emma regulate herself through OT. Which doesn’t mean she doesn’t need it, but more that no one’s found a good way to help her yet.
Another great post! Giving our kids communication has to be our highest priority. It is the only way our kids can truly make themselves known to others. Isn’t this every person’s wish?
Boy, you would think so, right?
I can’t manage to put into words what I want to say so I will just say, I agree! My daughter is verbal but can’t really express her feelings verbally. Since she has started her blog, she has confirmed things I have thought were going on in her mind and has shared a bit that I haven’t known, so for your family it must be amazing to know for sure what is on Emma’s mind and she must be happy to be understood.
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It’s late so I’m not thinking too well, but I just wanted to say my 12yr old daughter has the exact same backpack but in Orange (I showed her the photo of Emma and she said “Blue, KEWL!” and that she liked Emma’s dress).
And secondly it’s interesting to me, my son has similar use of stim accessories as Emma, his choice is dried cabbage tree leaves because they’re omnipresent around here and made of some tenacious fibery stuff that can be split to thin strips. He spins and twirls them in his hands, and bends them to precise shapes that he likes.
You cant put a price on it…and I’m eagerly anticipating when E is able to communicate, in any way…even just being able to tell us he needs a diaper or what particular snack has been an immense help. Gotta keep reminding myself hes only 4and momma needs to “slow the f*ck down” lol. Ive said it once I’ll say a million more times…you accomplished your goal already Emma…thanks to your courage (and others)E has had a momma who sees thru the nonspeaking part to the smart lil man he is. I got that gift when he was just short of 2. So thank you Emma (and Ariane)…now off to keep movin pebbles…I have the same goal to help just one kid…more would be great but even just one is one more than none. Keep “talkin” miss Em!