(Editor's note: Full-length version of story.)
"Gorgeous."
Brenda St. Amand was driving when she clearly heard
the word spoke by the only other person in the SUV that day, her
4-and-a-half-year-old grandson, Brendon.
She couldn't believe it.
"What did you say?" she asked.
"Gorgeous."
"Who is?"
"Memé is gorgeous," the youngster responded.
The three words left St. Amand speechless.
"That was our moment," says St. Amand, remembering
the conversation that took place the previous day. "I said to myself,
'This is what this is all about.' It was not only that he said the word,
but that he was able to associate the word with a person or object. It
meant now he is able to have opinions."
For youngsters like Brendon with autism spectrum
disorder (ASD), communication and social skills are key to helping them
develop to their full potential. Children with ASD have developmental
disabilities that impair their social interaction and verbal and
nonverbal communication, and cause repetitive behaviors or interests,
according to the National Institute of Mental Health (NIMH).
The Centers for Disease Control and Prevention
estimates that as many as 1 in 150 children have ASD, which is four
times more likely in boys than girls.
Despite evidence in the past 15 years that intensive
early intervention in optimal educational settings for at least two
years during the preschool years results in improved outcomes in most
youngsters with ASD, NIMH estimates that only half of children are
diagnosed before kindergarten.
As the result of his grandparents' advocacy, Brendon is one of them.
As a baby, Brendon would sit contentedly in silence for long
periods. By 18 months, he still hadn't uttered a word, but his behavior
had morphed into repetitive spinning on the floor and rocking on all
fours in bed.
"Each time my daughter took him to his pediatrician,
the message came back that I was an overreactive grandmother," St. Amand
says. "I remember my frustration, hurt and disappointment. At a year and
a half, I put the pressure on and eventually made the phone call to have
him tested and was told he has autism."
The state Department of Education's Child
Development Services referred the St. Amands to the University of
Maine's Conley Speech, Language and Hearing Center, staffed by faculty
and graduate students in the Department of Communication Sciences and
Disorders, and directed by speech-language pathologist Judy Stickles.
Conley offers audiology and speech-language clinics featuring diagnostic
services and family-based treatment involving evidenced-based practice.
"I remember the first day we took him to Conley two
and a half years ago and he could not speak a word," says St. Amand,
who, with her husband, Don, is Brendon's primary caregiver. "We had to
secure the chair (so he wouldn't repeatedly tip it over). He was easily
distracted.
"When he was moving around too much to sit in a
chair, we sat on the floor," says St. Amand. "I remember thinking, 'how
are they going to make this child talk?'"
For Lorriann Mahan, a Conley Center speech-language
pathologist and UMaine faculty member, Brendon was a nonverbal
preschooler with ASD and no time to waste. Mahan, the clinical
supervisor of graduate students in clinical practicums at Conley,
developed a speech-language therapy regime for Brendon. She and Conley's
grad students have worked with Brendon and his grandparents twice a week
since then to help the youngster understand and be understood.
His first words were verbs, like running and crying.
Then came his association of words with emotions.
"We crossed such a hurdle when he was able to
understand what we were asking or telling him, and he was able to
communicate with us," says St. Amand. "When someone says a child is
going to Conley for speech therapy, it's not just for speech but for an
education (in how to live in) the real world."
Without all the interventions of such providers,
says St. Amand, "we probably would not have been able to take care of
him. He'd probably be in an institution."
The Conley Center is where last fall Brendon first met Emilie
Nichols, a master's student in communication sciences and disorders who
took over his therapy under Mahan's supervision.
"They clicked from day one," says St. Amand. "She
has the patience. He trusts her and it's as if she knows him — his body
language, his need for a reinforcer or a break to bounce on the ball."
The learning is a two-way street between the student
therapist and youngster with special needs. Brendon provides instant
feedback, especially in his display of happiness at the smallest of
achievements, like word associations using flash cards and full-sentence
responses to questions.
"Brendon has a willingness to do anything you ask of
him, even if it's hard stuff. He's so loving and has a wonderful support
system. His is really a happy story. Working with people like that in
this field reminds me why I'm doing what I'm doing," Nichols says.
Nichols was a speech-language assistant in a
preschool prior to starting her master's work at UMaine. It was there
that she worked with a child with autism and realized the difference
speech-language can make.
"I have a high interest in children with autism,"
says Nichols, who hopes one day to specialize in speech-language
pathology geared to the disorder. "I like interacting with people and
being able to help. I see the progress every day and it's very
rewarding."
In a recent survey of speech-language pathologists
by researchers at Pennsylvania State University, published in the
January 2008 issue of Language, Speech, and Hearing Services in Schools,
the majority of respondents reported that "they could have benefited
from additional training in the area of autism." Through Conley and
placements like the Green House Nursery School and Child & Family Center
in Milford, and Stillwater Montessori School, UMaine graduate students
in the Department of Communication Sciences and Disorders get hands-on
training.
In her five months working with Brendon, Nichols
says the biggest changes have come in his expressive language abilities.
"He is one of those children who can do more than people give him credit
for," she says. "From one-, two- or three-word utterances, he now is
doing analogies and giving me two full sentences. He remembers and
learns so quickly. The more he talks, the more tools he'll have."
Nichols sees Brendon in her clinical practicum at Conley and at
her placement site at the Green House Nursery School and Child & Family
Center. The Green House, founded and directed by Lynn Faerber, opened in
1983 as an inclusive, community-based preschool, where up to a third of
the youngsters may have identified disabilities. Soon after it opened,
the UMaine Department of Communication Sciences and Disorders
collaborated with the Green House to set up a supervised placement site
to deliver speech-language services.
Today, graduate students in communication sciences
and disorders also are in placements at Stillwater Montessori and Holden
Elementary School. In addition, they assist in speech-language
evaluations at local public schools.
In her placement at the Green House, Nichols
provides one-on-one speech-language therapy to Brendon and two other
children with developmental disabilities. Communication skills to aid
social interaction with her typically developing classmates are a focus
for 4-year-old Selina, who doesn't effectively articulate her wants and
needs. Nichols gives her the language to help her navigate social
situations with her peers. For 5-year-old Kyle, with a developmental
delay, the therapy focus has been on social and language issues,
including his articulation. Maintaining focus also is an issue.
A parent, grandparent or guardian is encouraged to
sit in on the session as part of the family-centered approach to
continuing speech-language lessons at home. Also sitting in are
educational aides for the youngsters with disabilities, helping maintain
consistency by integrating the clinicians' communication ideas and
strategies when the youngsters are in the classroom.
"The children who go to Conley and the Green House
are not the only ones who learn," St. Amand stresses. "We as parents are
able to observe, learn and carry over their styles and techniques at
home."
Nichols also takes preliteracy lessons into the
classroom, leading story time once a week to focus on skills like
rhyming, and she interacting with all the preschoolers, ever-ready to
encourage effective communication that translates into good social
interaction among all children.
Weekly Nichols and Mahan meet with the Green House
teaching staff to talk about learning strategies and educational goals.
"Children on the spectrum learn best with an
extremely cohesive team," says Faerber. "One of the hallmarks of the
syndrome is the language disorder piece. It's critical that the
speech-language pathologist be part of ongoing, daily communication with
the team. That collaboration has been key."
UMaine and other state and private agencies
facilitate the inclusiveness of the Green House by providing onsite
services where youngsters need them most, says Faerber.
"We have a huge network of expertise and support out
there and, as a result, the outcomes for our kiddos are extremely
positive," Faerber says. "Things that people didn't think were possible
for kids do happen here. We need more people out there thinking outside
the box. Every child deserves to be in his or her community school, and
we're proof that it can be done through collaboration with the
university and others."
For UMaine School of Nursing undergraduates in a
pediatrics course, the Green House is one of 10 sites they can opt to
spend a morning to fulfill their clinical rotation requirements. The
goal is to acclimate the students to children outside a hospital
setting, helping them learn how to communicate with young patients and
learn to overcome preconceptions about disabilities, says Donna Cotton,
who teaches the UMaine course.
"Through observation and interactions with the
children, they get a flavor of normal growth issues as part of a
holistic approach to pediatrics rotation," Cotton says. "At the Green
House, it's so valuable for our nursing students to see the styles of
communication they use with children. The inclusive nature of the
school, where every child has the same opportunities, is always an
eye-opening experience."
The inclusive best practices modeled at the Green House are what
parents and grandparents hope to find when their youngsters with special
needs enter elementary school. One of the keys is in giving children
with disabilities the confidence in their communication and social
skills to walk into a new environment and succeed.
Brendon is headed to kindergarten in the fall, and
St. Amand already knows she will again ratchet up her advocacy, this
time with the local school, to get the transitional and placement
services he needs and is entitled to by law.
Brendon will go to school also equipped with reports
of his speech-language progress, including recommendations by Nichols
and Mahan about "what works for him and what he needs." And even after
he starts school, Brendon will continue to receive speech-language
therapy at Conley.
"My hope is to see him in a regular classroom,
learning like other children. Academically, I think he's going to be OK.
I'm just concerned about (social) activities," says St. Amand.
In the past three months, it's as if a switch has
been flipped in Brendon. "He's able to sit on the sofa and keep
occupied," she says. "He's even able now to sit and watch a movie. In
the past, he was always moving. Opening doors, opening the oven, tipping
over chairs. It was not safe.
"Now we're able to sit and have dinner together.
Before, eating was a big project and only specific foods he would touch.
Now he tries other foods, and that comes from what he's learned here.
"Today he talked about a train and cars on the
tracks," she says. "We can't wait for the word 'why' to come up in his
vocabulary. We can't wait for the day we can hold a conversation with
him. We can't wait for him to start the conversation."
by Margaret Nagle
May-June, 2008
Click Here
for more stories from the current issue of UMaine Today Magazine.
