alongside the ABA therapy team. While they focused on skill mastery and
behavior control, Barb explored ways to help Carly communicate. We reasoned that Carly’s
frustration and outbursts must at least be in part due to her inability to make her
wishes known.
Barb had started with PROMPT, a form of speech therapy where the therapist manipulates
the student’s jaw and mouth into position. Words were broken down into single sounds,
and then strung together. “We got the c sound out of Carly today!” one of her post-session summaries observed enthusiastically.
PROMPT seemed to work a bit, for a while. Carly could make sounds like ooce for juice, cackah for cracker, and even say mama . But over time, even these simple words disappeared. I was thoroughly disheartened
when meaningful sounds were mastered one week, then lost the next. There were periods
where Carly would make a step forward, being able to say Matthew’s name (“Ma-ah-foo”),
for instance, only to have the skill evaporate. For months they would work on a single
consonant. At this rate, we’d all be old before Carly could say her name.
The ABA therapists would then be instructed on how to continue to prompt Carly to
use this sound as much as possible through the week. Maybe she’d be able to do it
again next week. Maybe not.
Barb added sign language and then picture exchange techniques—endlessly looking for
ways to help Carly communicate. This last approach, known as PECS, was decidedly low-tech
but effective. Carly had stacks of cards containing photographs of things she might
want and she would merely have to point to make a request. Although cumbersome, it
beat screaming in frustration. Carly quickly got the hang of selecting cards for what
she wantedmost. Images of juice, cookies, storybooks, and swimming were used with frequency.
Broccoli and carrots much less so. She never pointed to “I love you.”
Barb believed that Carly’s inability to communicate fueled her anguish and tantrums.
At the end of each weekly home session, Barb painstakingly drafted clinical notes
summarizing the appointment and providing us with instructions that read like a how-to
manual. She wanted us to use multiple forms of communication, the theory being that
one skill builds on the other.
Carly had mastered a hard g sound after months of laboring. It’s one of the harder consonants to teach because
of the pulled-back position of the tongue, Barb told us. When Carly found she could
no longer replicate it, Barb was crushed. I came home once to find Barb, Mari, and
Tammy in our family room, Carly lying on the couch with her head hanging back off
the edge. As Tammy steadied Carly’s body, Barb supported her head and attempted to
use gravity to drop Carly’s mouth into position to make the elusive sound, but to
no avail. Barb shot me a look, a rapid raising of both eyebrows, as if to say, “Well,
we tried.” Barb was a cross between educator and the Army’s Corps of Engineers; she
never showed her frustration.
When Carly was four—just as she was entering the world of ABA—we began to witness
her exile from the community of her “neurotypical” peers. Taryn attended a neighborhood
nursery school and we became friends with a family up the street. They, too, had twin
girls, and despite Carly’s obvious lack of ability to connect, the Millses always
included Carly in any plans they made with Taryn and their daughters, Sydney and Katherine.
Carly seemed to have a connection with the girls’ father in particular. A family doctor,
Tony was calm and matter-of-fact. He seemed to look right past Carly’s oddness and
see something much deeper. In return, he wasone of the only people other than Tammy, Mari, or me who could hold Carly without
making her cry. She loved his unruly beard and metal-framed glasses.
After school, the three girls often went back to Lauren and Tony’s, and Tammy would
behavior control, Barb explored ways to help Carly communicate. We reasoned that Carly’s
frustration and outbursts must at least be in part due to her inability to make her
wishes known.
Barb had started with PROMPT, a form of speech therapy where the therapist manipulates
the student’s jaw and mouth into position. Words were broken down into single sounds,
and then strung together. “We got the c sound out of Carly today!” one of her post-session summaries observed enthusiastically.
PROMPT seemed to work a bit, for a while. Carly could make sounds like ooce for juice, cackah for cracker, and even say mama . But over time, even these simple words disappeared. I was thoroughly disheartened
when meaningful sounds were mastered one week, then lost the next. There were periods
where Carly would make a step forward, being able to say Matthew’s name (“Ma-ah-foo”),
for instance, only to have the skill evaporate. For months they would work on a single
consonant. At this rate, we’d all be old before Carly could say her name.
The ABA therapists would then be instructed on how to continue to prompt Carly to
use this sound as much as possible through the week. Maybe she’d be able to do it
again next week. Maybe not.
Barb added sign language and then picture exchange techniques—endlessly looking for
ways to help Carly communicate. This last approach, known as PECS, was decidedly low-tech
but effective. Carly had stacks of cards containing photographs of things she might
want and she would merely have to point to make a request. Although cumbersome, it
beat screaming in frustration. Carly quickly got the hang of selecting cards for what
she wantedmost. Images of juice, cookies, storybooks, and swimming were used with frequency.
Broccoli and carrots much less so. She never pointed to “I love you.”
Barb believed that Carly’s inability to communicate fueled her anguish and tantrums.
At the end of each weekly home session, Barb painstakingly drafted clinical notes
summarizing the appointment and providing us with instructions that read like a how-to
manual. She wanted us to use multiple forms of communication, the theory being that
one skill builds on the other.
Carly had mastered a hard g sound after months of laboring. It’s one of the harder consonants to teach because
of the pulled-back position of the tongue, Barb told us. When Carly found she could
no longer replicate it, Barb was crushed. I came home once to find Barb, Mari, and
Tammy in our family room, Carly lying on the couch with her head hanging back off
the edge. As Tammy steadied Carly’s body, Barb supported her head and attempted to
use gravity to drop Carly’s mouth into position to make the elusive sound, but to
no avail. Barb shot me a look, a rapid raising of both eyebrows, as if to say, “Well,
we tried.” Barb was a cross between educator and the Army’s Corps of Engineers; she
never showed her frustration.
When Carly was four—just as she was entering the world of ABA—we began to witness
her exile from the community of her “neurotypical” peers. Taryn attended a neighborhood
nursery school and we became friends with a family up the street. They, too, had twin
girls, and despite Carly’s obvious lack of ability to connect, the Millses always
included Carly in any plans they made with Taryn and their daughters, Sydney and Katherine.
Carly seemed to have a connection with the girls’ father in particular. A family doctor,
Tony was calm and matter-of-fact. He seemed to look right past Carly’s oddness and
see something much deeper. In return, he wasone of the only people other than Tammy, Mari, or me who could hold Carly without
making her cry. She loved his unruly beard and metal-framed glasses.
After school, the three girls often went back to Lauren and Tony’s, and Tammy would
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