| Everything
was falling into place for Cathleen Mattson. Recently married, armed
with a master’s degree in neuroscience, she was planning to
apply to medical school.
Then the unthinkable
happened.
While running an errand
with her mother, Mattson had a seizure that sent her to the hospital.
The diagnosis: a brain tumor.
After an operation in
2003 and treatment with chemotherapy and radiation, Mattson’s
remaining tumor is receding, but her life has been forever changed.
Complicated surgery on the tumor— located over the speech
and motor area of the brain—severely affected Mattson’s
ability to communicate. Although she may know what she wants to
say, finding and uttering the words is now a struggle.
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Cathleen
Mattson, left, works with clinician Stephanie Rosentrater
on rebuilding her language skills during her twice-weekly
sessions. Photo by Mary Levin. |
Fortunately, Mattson
has found help at the UW’s
Speech and Hearing Clinic, part of the Department
of Speech and Hearing Sciences. She visits the clinic twice
each week with her mother, Kay Rafferty. Slowly, steadily, she is
regaining her language skills.
Mattson is in good company.
About one thousand patients visit the Speech and Hearing Clinic
each quarter, with communication concerns ranging from fluency problems
(stuttering) to voice or articulation disorders to aphasia, an impairment
of the ability to use or comprehend words, usually acquired as a
result of a stroke or other brain injury.
“I feel so much
gratitude that we found this program,” says Rafferty. “The
focus here is one of discovery, figuring out what works for each
individual. The knowledge and expertise of the staff is phenomenal.”
Good for Patients,
Good for Students
While the Speech and Hearing Clinic has been invaluable for patients
like Mattson, it plays another important role as a training facility
for graduate students in speech and hearing sciences. The center’s
treatment rooms sport one-way mirrors, with neighboring observation
rooms for faculty, students, and patients’ families. Sessions
are often recorded for later viewing and analysis by faculty and
graduate students.
“When clients come in, we make it clear that while they will
receive excellent service, they also will serve as a teaching tool
for our students,” says Joan Hanson, clinic manager.
First- and second-year graduate students are the primary clinicians
for treatment sessions. Faculty closely supervise the students’
work, observing at least 50 percent of the treatment sessions—twice
the rate of supervision mandated by the American Speech and Hearing
Association.
“Our faculty-graduate student ratio is very high,” say
Nithya Siva, clinic instructor, who graduated from the program herself.
“This is costly but important for the training of qualified
therapists.”
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Nithya
Siva, Nancy Alarcon, and Joan Hanson (from left) of the
Speech and Hearing Clinic. Photo by Mary
Levin. |
Why would patients agree
to be treated at a clinic where they are a “teaching tool”
as well as a client? First, there’s the financial incentive.
Treatment sessions cost “a fraction of what patients would
pay on the outside,” says Hanson. But there are other benefits
as well.
“I see the teaching environment as a big plus,” says
Nellie Ohannes, who brings her two sons, ages 5 and 8, to the clinic
for twice-weekly speech therapy. “The clinicians are always
cheerful and well prepared. And the supervisors have been outstanding.
They are so thorough and compassionate. It’s way more than
just competence.”
Ted Paluchowski, who has been attending a support group for stroke
survivors for six years, figures that he’s probably been through
a generation of graduate students already. “I could probably
do their homework for them,” he jokes. The students are a
huge asset as facilitators, he says, because they “come with
all that enthusiasm, all that positive energy.”
Finding Alternate
Routes for Communication
Positive energy is essential when working with patients like Paluchowski
and Mattson, who have suddenly lost the ability to communicate due
to a stroke or other brain injury. The clinic regularly sees about
25 stroke survivors, in individual sessions and in two weekly support
groups, each facing the wrenching prospect of a life altered by
the loss of language skills.
“Language, communication,
speech—all of this is incredibly complex work,” says
Dr. Robert Miller, lecturer in speech and hearing sciences. “It
is amazing that anyone can talk. More than any other motor activity,
it happens so fast and requires so much precision. It is so easy
for something to disrupt it, and so difficult to reestablish that.”
Mattson knows this only
too well. After her brain tumor was removed, she had great difficulty
finding the words needed to communicate. She was seen by language
pathologists in the hospital, but her improvement was very slow.
That all changed when she discovered the Speech and Hearing Clinic.
“This clinic tried
different approaches until the lights started to come on,”
says Rafferty, who observes each of her daughter’s sessions.
“They take the time to see what works for each individual.”
One exercise that has
helped Mattson involves repeating a handful of words over and over.
In true Seattle fashion, the first words she chose to focus on were
chair, coffee cup, and latte. “Once she had those words, other
words started to come,” says Rafferty.
Miller explains that
Mattson still has all the words in her head but needs help accessing
them. “The dictionary is still there,” he says. “The
difficulty is finding the word you want when you want it. It will
never be as easy as before, but it will get easier to find the right
word.”
In the meantime, one
strategy is to work around the blockage, finding other ways to communicate.
Rafferty likens it to finding alternate routes to avoid traffic.
“It’s like I-5 is blocked each time you try to travel
on it,” she says, describing her daughter’s language
challenge. “The clinic has been working with Cathleen to find
alternate routes to get where she needs to go rather than taking
I-5.”
Sometimes these routes
don’t involve speech. Patients are encouraged to use gestures,
drawings, and sound effects to get their point across. Notebooks
with cues—such as photos of family and friends, lists of children’s
names, and career history—can also prove helpful. “The
notebook is an augmentative tool, much like a wheelchair might be,”
explains Nancy Alarcon, lecturer and director of the Speech and
Hearing Clinic.
A Safe Place
for Sharing
Alarcon runs two weekly
support groups for aphasia patients. They gather around a table,
armed with their notebooks, and talk about their lives. A graduate
student facilitates the discussion, encouraging conversation through
gentle but persistent probing. For some participants, sharing the
simplest information is a challenge. But making the effort is a
huge step in recovery, says Alarcon.
“It is so easy for people to sit back and stay quiet,”
says Alarcon, “so part of what we do is draw them out with
topics that are engaging.” In one recent session, the topic
was the tsunami disaster. Patients also bring photos or other items
from home to discuss with the group.
Paluchowski has been attending a support group for higher-functioning
aphasia patients for nearly six years. He remembers how difficult
the experience was at first.
“When I started, I had extreme difficulty speaking,”
says Paluchowski, who had nearly completed a PhD at the UW before
suffering a stroke in his 50s. “When I tried to talk, it was
all a jumble. But Nancy [Alarcon] always forced us to make a presentation
at each session, even though it might be very primitive. She had
us keep pushing, pushing, pushing, and encouraged us to make our
presentations longer. And there was a lot of encouragement from
the others in the group.”
To hear Paluchowski today, his conversation flowing easily, it’s
hard to grasp what he’s been through—and the challenges
he still faces. “Oral comprehension is still difficult,”
he admits. “In a room with too many people talking at one
time, it’s very difficult. But I’ve gotten to the point
where I have become relatively articulate, and I’m able to
read and write again.”
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| Bob
Anderson (left) and Ted Paluchowski. Photo
by Nancy Joseph. |
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Bob Anderson is in the
same support group and shares Paluchowski’s gratitude. “It’s
a place that feels safe,” he explains.
Anderson didn’t always feel that way. When he first joined,
he found that his language skills were well above most of the other
participants. “I was saying to myself, ‘These people
are in worse shape than I am. What good is this to me?’”
recalls Anderson. “I figured maybe I could help them. I felt
very philanthropic. All of which was bull. It just took me a while
to realize that the group was helpful to me, too. The other individuals
provide a comfort and sharing that is very difficult to get elsewhere.
A lot of people don’t understand the worth of that.”
Anderson now edits a newsletter for the clinic with stories by and
about aphasia patients and their treatment. Although he often shares
other individuals’ stories about their stroke and recovery,
his own story has been elusive—buried somewhere in the portion
of his brain affected by his stroke.
“I tell other people’s stories in the hope that by telling
their stories, I can piece together parts of my own story,”
he says, “and maybe trigger some memories.”
Keeping People
in the “Game of Life”
For Anderson and Paluchowski—and countless others visiting
the clinic—the emotional aspects of a communication disorder
are nearly as challenging as the physical aspects. Recognizing and
addressing this emotional component is an important part of students’
training in the clinic.
“Some of our clients have been very isolated, feeling like
they are the only person who has ever had this experience,”
says Alarcon. “They can feel very alone. Communication is
so central to everyday life. Our goal is to keep people in the game
of life.”
It’s not just the patients that need support. Their families
and friends are also part of the equation. Spouses and children
must adjust after a loved one has been affected by a language disorder.
After a lifetime of communicating through talking, their relationship
can be shaken when that is compromised.
“It’s a
whole new situation for the family,” says Alarcon. “Sometimes
we have one-on-one sessions with a spouse, or with a patient and
spouse, to work on strategies for better communication. It’s
intuitive to react to the spouse as you always have, but that’s
often not effective. It’s just frustrating for everyone.”
Working with
Kids
The emotional aspect is not limited to families affected by aphasia.
Nellie Ohannes marvels at how the clinicians address family issues
related to her sons’ language challenges.
“I have been so impressed by how they deal with the peripheral
issues,” she says. “They have been very supportive of
the total family environment. They see the total family context.”
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| Alex
Ohannes uses a straw to direct his air flow, with encouragement
from graduate student Rachelle Canavas. Photo
by Karen Orders. |
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Both of Ohannes’s
sons were adopted from Russia. Eight-year-old Alex was born with
a cleft lip and palate, severely affecting his speech. He has had
four surgeries and has been visiting the clinic on and off since
he was two.
“In the early days, a lot of the work was to help him find
ways to communicate, because he was desperate to communicate,”
says Ohannes. “He still loses a lot of air through his nose,
which affects the sound of his speech, because his soft palate will
not close all the way.” Exercises address the problem, including
one in which he must use the sides of his tongue to direct air flow
through a straw.
Younger brother John Samuel, age five, has experienced language
delays that necessitated clinic visits as well. Each boy works with
a clinician in a separate room while Ohannes watches from an observation
room sandwiched between them.
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John
Samuel Ohannes plays a version of "Go Fish" with
graduate students Chaitee Sengupta and Heidi Bigelow (from
left)--a fun way to work on his language skills.
Photo by Karen Orders. |
For the graduate students
who serve as clinicians, working with children presents its own
set of joys and challenges. First, there’s the need to keep
the child engaged—no small matter when you’re dealing
with a pre-schooler. There can be behavior issues, or a lack of
motivation. After all, it’s usually a parent rather than the
child who makes the decision to visit the clinic.
Faculty supervision proves critical in such situations. Ohannes
says that when the boys test their clinicians’ limits, the
faculty member takes note of the situation and works with the student
after the session to find a solution. She recalls one particularly
difficult session, during which John Samuel crawled under a table
and spent the hour hitting the floor and crying. “By the next
session, the graduate student had all sorts of activities to do
with him under the table,” she says with a laugh.
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Nellie
Ohannes observes her son's session through a one-way mirror.
Photo by Karen Orders. |
Sometimes faculty will
help during a session if they sense that a student is struggling
with a client’s behavior. “I’ve always appreciated
that,” says Heidi Bigelow, a second-year graduate student.
“And I like the opportunity to see a seasoned clinician come
and work with the client a little bit.”
Leaving the Safety Net
By the time they earn their master’s degree, all speech-language
pathology graduate students have worked with both children and adults
on a wide range of issues, from aphasia to stuttering to voice concerns
to language delays. Some work in schools after graduating; others
head to hospitals or other health care facilities.
Bigelow, who has chosen a career in speech and hearing science because
it combines her interests in English, science, children, and helping
others, plans to work in a school setting. She is interning in the
Mukilteo School District during her final quarter and finds the
prospect of graduating bittersweet.
“I’m going to miss the clinic,” Bigelow admits.
“It’s quite the safety net, with wonderful people to
guide you. This is the ideal world—an amazing program with
incredible people in it. It’s not going to be like that out
there in the ‘real world.’”
Clients echo those sentiments. Cathleen Mattson, who was rarely
able
to access any correct words just one year ago, perhaps says it best.
“You guys are awesome,” she tells the clinic staff.
“I feel like I’m getting much better. Because of you,
I feel a change. It’s really . . it’s just the best.”
For more information,
visit the UW
Speech and Hearing Clinic website.
[Winter-Spring 2005 - Table of Contents]
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