With our transferrable plane tickets, we had that ace in a hole. If things got bad, we could always go home. Still, we’d come so far. After that curb screaming incident, though, she calmed down. We could give it another chance. Besides, I wanted to see Ireland. I had always wanted to do this trip.
NEXT ON THE itinerary was a trip to Belfast to see where the Titanic had been built. Tom came down with a cold and opted to stay in Dublin, so Emily and I went on the bus, a three- or four-hour journey together.
On the ride, she got agitated and started doing her verbal stims and finger flapping. It was disruptive.
One of the kids in the program didn’t help matters.
“Is she ever going to stop making noise?” he kept saying. “Is she ever going to stop?”
I’m sure Emily heard him and felt irritated as well.
Meanwhile, I kept talking to her in an effort to calm her. I did not want to use medication. Every time there was a slight change in the itinerary, or a lengthy wait, or strange foods, Emily showed signs of a possible meltdown. I wanted to nip any potential outburst in the bud. Even when I did resort to the use of sedatives, they didn’t help, so I stopped. If Emily became agitated, there was little I could do besides talk to her—or simply let her spiral down and move past the upset.
We went on a ghost tour in Kilkenny with a costumed guide who walked us through the streets of the city. Emily went along but wasn’t overly interested or impressed. While we didn’t have any real problems with her behavior on that tour, I don’t know how much she enjoyed it. Walking around Kilkenny, as well as the other cities on the tour, watching the people, taking in the life in this foreign land was what really appealed to her.
Falconry and hurling were also on the agenda. She watched as Tom and I stood with leather-gloved arms to have a hawk land on us, but the falconry made no real impact on her. She tolerated it. The hurling—an outdoor team game of ancient Gaelic Irish origin, in which players use a wooden stick (called a “hurl”) to hit a small ball into the opposing team’s goal—however, she really enjoyed. Whenever we did things outside with other people, she liked the experience: walking in parks, being around castles, eating in restaurants.
THE HASSLES OF travel, meanwhile, took a toll: sleeping in different places, the constant shuffling about, the unfamiliar sounds, textures, and sights, the crowds and chaos. Emily was a little more anxious and agitated with each passing day.
On the itinerary was one stop that for me was the highlight of the trip, though I know I was kind of silly in my thinking about it. We were going to see Blarney Castle. As everyone knows, kissing the Blarney Stone is said to confer the gift of gab on the kisser. I’m a bit superstitious. Such thinking wasn’t logical, but why not? It could happen for her. Kissing that famous stone certainly couldn’t hurt. Perhaps Emily would spontaneously receive the gift of speech.
The Blarney Stone is a block of carboniferous limestone that was set into the castle wall in 1446, though the reason it’s there and how it gained its reputation for bestowing eloquence on a kisser is a source of much debate. The castle itself is a popular tourist site, attracting visitors from all over the world. Winston Churchill and President William H. Taft were reportedly among the visitors who’d come seeking the gift of gab.
And now, so would Emily Faith Grodin.
To kiss the stone, though, was no easy feat. A person has to be held while they lean backward to reach the stone, essentially upside down. I didn’t know how that would go over with Emily.
WHEN WE ARRIVED at Blarney Castle, the place was crawling with tourists. A cruise ship had docked locally and expelled hundreds of sightseers. Our own group was on a tight timetable, tied to a bus schedule. As soon as we got to the castle and saw the lines to kiss the stone, my heart plummeted. I really wanted her to kiss it. We’d come so far. I felt so silly and yet . . .
I stared at the lines of people waiting for their chance. Emily would never put up with standing in that line just to placate me. Even if I could convince her, there just was not time. If there had been, she likely wouldn’t tolerate the process of kissing the stone. What about the germs? I was more disappointed than I should have been.
We toured the gardens and the gift shop and the whole time, I felt myself growing bluer and bluer. It was almost time to leave. We needed to go back to the bus. We were about to hit the parking lot when I took Emily by the hand.
“Here, come with me.”
Tom followed, unsure of what was up.
“Blarney Stone, Blarney Castle. What difference does it make?” I hustled through the castle grounds. “They could be the same thing, for all we know. Maybe it’s the castle that holds the magic.”
I led her to a quiet side of the castle, away from all the other tourists, to a slab of rock with streaks of lichen and moss on it.
“Okay, Emily,” I said. “Just kiss the castle.”
She must have thought I’d lost my mind, as I’m sure Tom did.
I mimed for her what to do.
She did as I asked, laughing, convinced, I’m sure, that I was off my rocker. She did indeed kiss the castle. Did that make the difference? It’s so ridiculous to think so. And yet, I’m so glad I insisted.
My favorite part of that trip to Ireland was the glorified version of an overseas trip that I had in my mind, more so than the trip itself. I did enjoy being with my parents on the trip—they are excellent travelers. And the beauty of the environment; I did like to see a world so very different from the one I am in every day. I liked much of the foreignness of the experience, and I was surprised by how different a place could be from my own home. I think the oldness of it all almost felt like going back to another time. It was my first time experiencing something like that.
Still, I was intimidated by a lot of it because I knew from all of the preparation for the trip that it was a big deal. I was so far from home that, even in an emergency, I would not be able to go home. Before we went, I didn’t think the flight would be intimidating, but then when I was on it that first time for so many hours. It just went on and on. Like, the intimidation builds and it really takes a toll.
I absolutely wanted to go abroad for the experience, but I did not really have the experience that I was hoping for. I was very disappointed in my inability to make it work better for my parent’s sake.
I was happy to be in Ireland in the beginning, and that faded and I really wanted to be home.
13
If having Emily kiss the Blarney Stone is considered a woo-woo ploy by a desperate parent hoping to prove her daughter is more intelligent and capable than is realistic by making sure she’s suddenly granted the gift of speech, some in the autism and speech-therapy communities would consider the facilitated communication (FC) we’d been trying unsuccessfully with Lindsey to be just as suspect.
We had first explored FC when Emily was thirteen, but it had had no impact on her. By the time she returned home from UCLA, FC was really the only therapy we still had not exhausted. We had no idea whether it would now be successful and we had no vested interest in making sure this method worked where others had failed. We simply approached FC like many of the therapies we engaged: we would throw it against the wall and see if it stuck.
Alternative and augmentative communication (AAC) is the umbrella term that encompasses many types of communication, including pointing at pictures, letters, or objects, or the use of sign language—and is highly respected and accepted in the autism and disability communities. FC is a form of AAC in which people express themselves by typing on a keyboard, often with the assistance of a communication partner, who may be a teacher, parent, speech pathologist, or a friend.
Often, efforts toward using FC start out with the communication partner offering a letter board, which is like a printed keyboard, usually covered in clear plastic. The partner asks the client to point at letters, one by one, to spell out whatever the partner requests, such as the client’s name, the words “cat” or “dog,” or the color “red.” The p
artner, meanwhile, provides physical stability to help the client hit the correct keys. The backward resistance offered by the partner, often at the client’s elbow, may serve to slow the pace of the client’s pointing and/or to help overcome the client’s impulsiveness. This support also assists the client to resist striking a target letter repetitively.
The partner is also supposed to provide emotional and communicative support by verbally encouraging and motivating the client. This is especially important as many typers experience high levels of anxiety. In addition, the partner provides communicative support to help the client stay focused and to clarify ambiguous messages. For example, if the client stops in the middle of a sentence, the partner might say, “Do you want to finish that thought?” or read back the sentence to lure the client into the headspace that had been present at the origination of the thought. In doing so, the partner communicates respect and the presumption of the client’s competence.
Later, after Emily’s breakthrough, when I thought more deeply about the support that Lindsey would provide, it made total sense. If Emily’s limitations were rooted in issues of movement and timing, then having a partner who could offer stability and make up for these movement and timing-based shortcomings might help.
This is what Emily later had to say about working with her communication partner: My partner offers support in so many ways. My emotional control is weak. I need that help to be able to organize my thoughts and when emotion is added I go into panic mode. I am the kind of person, who when given a task, will work through even if a break would be beneficial. My partners have helped me to recognize this for myself because otherwise I would again work myself into a panic.
TRAINING OFFERED IN FC by Syracuse University’s Institute on Communication and Inclusion clearly states that the communication partner should never move or lead the person.
The partner is there to provide support, not to influence the conversation. Apparently, though, that wasn’t always the case and that, unfortunately, led to the discrediting of the technique.
Today, if you Google FC, you’ll absorb a heavy dose of caution mixed with the fear of fraud—which I get. Over time, too many people in the autism community have been taken in by shady and untenable ideas that thrive on a parent’s desperate hope that their child may have some kind of miraculous breakthrough. Of course there should be caution. The same is true in the cancer community and elsewhere when hope is the coin of the realm. Still, there are good reasons to examine the criticism in order to understand it better.
Over the years, several highly publicized instances of autistic persons producing sophisticated responses were later shown to be false. The communication partner, it was found, had in fact “led” the autistic individual to produce the answer, often by placing their own hand over the autistic person’s hand. In some cases, the partner had done this leading without realizing it—had, in essence, produced “the Ouija Board effect.” Called the hand-over-hand method, it has since been eliminated in the proper practice of FC.
Then there was the headline-grabbing case of Anna Stubblefield, a professor of ethics at Rutgers University who served as a communication partner with a man who had cerebral palsy. “With his hand in hers, she helped him type out words after nearly 30 years of silence,” reported the New York Times Magazine in their exposé. Stubblefield fell in love with the man and believed her affections were reciprocated, and thus started a sexual relationship with him. The family believed differently and had her arrested. Initially, Stubblefield was convicted on two counts of first-degree aggravated assault against the man because, it was argued, he was not capable of giving consent. Eventually, the case was overturned and she pled guilty to a lesser charge, but the damage to FC was done.
However, the notion that all FC is impossible because of the Stubblefield case, or because of several cases in which results were manipulated, is unconvincing and as dangerous as the categorically opposite view. Think of it like cancer treatments: just because a particular treatment only works for some patients doesn’t mean no one should receive it.
One of the most maddening positions against FC is based on dubious and frankly arrogant logic that goes like this: Because certain autistic individuals are capable of doing things that appear to be the equivalent of independent typing—turning on and playing a video game, for example—why would they need the typing “support” and physical proximity of the communication partner to communicate? That is, why can’t they just do it on their own? However, this way of thinking fails to take into consideration the very neurological and sensory challenges that often characterize individuals with autism. Indeed, it plays into the downright untrue notion that those on the autism spectrum, particularly those who lack oral speech, are cognitively limited and should be considered intellectually disabled. As wrong as these conclusions are, and despite the evidence of so many, including Emily, demonstrating significantly high levels of intelligence and insight through the use of FC, the dismissal of the methodology by its critics was largely clinched by Stubblefield and other high-profile cases, leading to numerous doctors and speech therapists coming out publicly against it.
Since then, many large and influential associations like the American Speech-Language-Hearing Association (ASHA) have used these cases to disparage FC, effectively taking a hardened stance that has made it more difficult for many with autism who might benefit from gaining access. If disability rights are all about granting individuals dignity and choice, this frozen position is, to some of us, infuriating.
A few years ago ASHA released a statement saying that facilitated communication was “a discredited technique that should not be used.” Pushback came fast and with fury. On July 17, 2018, a national coalition of twenty-three civil and disability rights organizations called on ASHA to withdraw its statement, asserting that the consequences of its position would “almost certainly lead to civil rights violations.” The opposition was motivated by a community that deeply desires to believe in FC. The coalition claimed that ASHA’s position was flawed because, among other reasons, it was based on the unfounded and discriminatory presumption that people with speech-related disabilities are incapable of complex thought. Further, ASHA’s statement was developed behind closed doors without input from users, professionals, or ASHA members who have experience with the method.
Despite the controversies, though, FC has continued to flourish because in some cases—certainly not all—it provides a real and very tangible form of communication for individuals who have no other outlet. Syracuse University, the University of Kansas, and the University of New Hampshire, among others, continue to research FC and consider it a legitimate field of study.
There’s no question that FC does not work for everyone. However, it’s yet another tool that should be considered for those who have limited verbal communication. For Emily and many with limited or impaired speech, movement regulation issues, and/or difficulty initiating language, FC has proved helpful.
In May 2020, a small-scale peer-reviewed study was released in Scientific Reports looking at the question of whether communications produced via FC are the actual thoughts of the people typing. Using head-mounted eye-tracking devices on nonspeaking autistic people, the study investigated what they called the typers’ “communicative agency”—attempting to discern if the typer was the one conveying the thoughts, not the communication partner. The study found that the cuing of the participants’ performance was “unlikely.”
“The speed, accuracy, timing, and visual fixation patterns suggest that participants pointed to letters they selected themselves, not letters they were directed to by the assistant.” Thus, the study concluded, “the blanket dismissal of assisted autistic communication is therefore unwarranted.”
THIS IS WHAT Emily has to say to ASHA:
PRONOUNCEMENTS AND DENOUNCEMENTS
Make light of my condition
Partake in the derision
Not a word to me you’ve said
Yet you purport t
o know what is in my head
I ply you with typing
You respond with griping
People outside don’t know
How low you can go
The timing is just right
For my triumphs to be out of your sight
That is the nature of the beast
Who chooses always to see the least
Friends though they appear to be
To me they are the enemy
Having people support my expression
To you your power it will lessen
Change your fear
Because soon my independence will be clear
14
THE UNSPOKEN STORM WITHIN
I have felt the storm within me. The storm of things unsaid.
The crippling weight of thoughts
Emotions
Opinions
That can’t quite make it to the surface.
I have had to find other ways. Other ways to make them heard.
Ways to let the world see that I am thinking, and breathing, and experiencing just as the rest.
My mind is a constant whirlwind, pondering rapidly on everything, and nothing.
Musing in my own head, locked away, the best kept secret under the circumstances.
That is, my circumstances.
A polite way of saying she doesn’t speak. She can’t form her words in such a necessary way, the same way our lungs need oxygen to expand and breathe.
Her joy, her grief, the elated chatters of a young girl, buried, trapped.
And in these unspoken words, a storm brews.
It raises in strength and intensity, needing escape, craving to live in the real world.
But all that emits are tiny fragments, little drops that only tell an inch of the mile going on inside.
All that the world will hear is laughter or screams or sounds they can’t interpret.
And how can I provide more? How can I begin to portray the tiny details and specifics, when my words cannot paint the big picture.
I Have Been Buried Under Years of Dust Page 13
