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?