Success Stories - Finding the Words
(Editor’s note: Full-length version of story.)
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.
“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.”