Sunday, July 28, 1963
At Storybook, Big Specialists Score Little Triumphs
By J. A. C. DUNN
At the bottom of the long mead
ow that slopes away from the
main play area at Storybook
Farm summer capip, a low cin
derblock building houses 18 chil
dren. All but five have cleft
palates. Os the others, two are
severe stutterers, two have ar
ticulation problems, and one is
* an aphasic. The children are
learning to speak.
To hear a doctor talk about
cleft palates, you would think the
problem was entirely mechanic
al. Dr. Erie Peacock describes
the affliction in surgeon’s and
specialist’s terms, rapping out
words like orthodontics, prostho
dontics, otolaryngologist, audio
logy, psychometrics, fistula, uvu
la, and others.
You think, well if he knows
all those words, he and all the
other specialists ought to be able
to fix the trouble. They can and
do, but only up to a point. Chil
dren with cleft palates need
more than surgical, medical, and
dental attention. They also need
a certain psychological care, and
therapy. They have to learn that
they are not ridiculously laugh
able, and that they can speak
correctly. They have to learn
that they need not spend their
lives being referred to as “hare
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lips”—a term never used at the
center, not only because it is an
inaccurate description of the
cleft palate, but also because jt
is cruel.
All this combined treatment
works. When a child's speech
improves, he begins to regain his
self-respect. With increased self
respect comes greater effort to
improve his speech. Many of
the children work like nailers to
get the sounds right, artfl the
more their speech improves, the
more they emerge from defensive
withdrawal and rejoin the rest of
the world. They even help each
other.
BACKGROUND
The cleft palate rehabilitation
center was started last year in
a house on McCauley Street in
Chapel Hill by Dr. Peacock. It
is now run by director Gene Har
ris, and chief speech therapist
Aloysia King. Last summer the
center had seven children and
two speech therapists. This sum
mer there are 18 children, in
cluding four from the original
seven, and three speech thera
pists.
The Center was moved this sum
mer to Storybook Farm, four
miles west of Carrboro, to give
the children more natural and
congenial recreation facilities.
Most of the children come from
rural areas all over North Caro
lina.
“If he came from a tobacco
farm in Kinston,” Dr. Peacock
says, “give him a fishing pole
and let him sit on the bank. If
he’s accustomed to seeing the
north end of a southbound mule,
put him out where he can see
that. You can’t really rehabili
tate him if he’s just sitting in a
room looking at a wall.”
The logistical expenses (food,
salaries for therapists> are paid
by the Crippled Children's divi r
sion of the North Carolina De
partment of Public Health and
the Plastic Surgery Trust Fund.
The UNC School of Medicine Fac
ulty put up the collateral for a
$9,000 Orange Savings and Loan
Association loan for the building
at Storybook. Memorial Hos
pital donated beds and linen. The
UNC RTVMP Department is
making a movie of the center’s
ooerations, to be shown around
the State as part of a fund-rais
ing campaign. Mr. and Mrs.
Warren Barrett, who run Story
book, are in charge of the cen
ter's recreation program.
THE CLEFT PALATE
One'of every 700 babies is bom
with a cleft palate or a cleft lip,
the largest single group of con
genital deformities in this coun
try. A baby can be born with one
or the other, or both. The de
formity is caused by interference
w’ith the palate formation process
during the first three months of
pregnancy.
Very simply, a cleft palate is
a hole (fistula) in the roof of the
mouth. The cleft can start at
the upper lip and extend all the
way back to the uvula (the little
pink tail at the back of the mouth
that wiggles when you say
“Aaah”). Sometimes only the
lip is cleft. Sometimes only
part of the palate is cleft, and
the lip is not.
Regardless of the extent of de
formity, however, the effect is
often disastrous as far as speech
is concerned. When nose and
mouth are not separated, the air
pressure in the mouth necessary
to make what are known as plo
sive sounds—P or B, for example
—cannot be built up. Cleft palate
children speak with the backs
of their tongues, instead of the
tips, to close the vacancy in the
mouth and build up the pressure.
Nevertheless, they often make
G’s for T’s, and K’s for D’s.
Also, using the back of the ton
gue instead of the tip makes it
almost impossible to make an
Sor a Z sound. In severe cases,
the S will come out more as a
snort than anything else.
Generally, the effect of the
cleft palate on speech is the
elimination or distortion of con
sonants. Try saying “I want to
go home” without using any of
the consonants in those five
words and you get an idea of
how difficult it is for a cleft
palate child to communicate with
the people around him.
MEDICAL ASPECTS
The effect of a cleft palate is
THE CHAPEL HILL WEEKLY
just as notable physically as it
is in speech. Cleft palates dam
age teeth; man£ cleft palate
children have very poor teeth at
an early age. Cleft palates dam
age hearing, cause recurrent in
fections in the mouth and ear,
and sinus, tonsil, and adenoid
troubles. Palatal muscular and
nerve trouble also is caused by
the cleft. Thus many cleft palate
children’s speech problems can
be caused as much by infection
and the fact that they cannot
hear property as by malforma
tion of the mouth.
Surgery can correct the cleft,
but even after surgery a wide
variety of specialists usually
must do their parts. A plastic
surgeon may have to correct vis
ible deformity, in lip or nose. An
orthodontist may have to apply
braces to straighten erratically
growing teeth. If the teeth are
irreparable, a prosthodontist may
have to make new ones. Nose
and throat troubles may have to
be treated by an otolaryngologist.
For other troubles a general pe
diatrician may be consulted. An
audiologist usually must test a
child’s hearing, and either im
prove it or halt any further im
pairment of hearing. A speech
analyst must determine the de
gree of speech impediment, a
speech therapist must correct
speech. Somewhere in there the
child should receive a psycho
metric examination to determine
his IQ and his learning capacity.
Sometimes the psychometric ex
amination indicates the presence
of organic troubles. Efforts are
made to avoid having tonsils and
adenoids removed, because these
organs help fill the empty space
in the mouth in which air is use
lessly diffused instead of being
directly channeled along the pa
late to the lips, enabling clear
speech.
The children at Storybook usu
ally have undergone or will un
dergo some or all of this treat
ment. Some are patients at
Memorial Hospital here, others
are referred here by hospitals
elsewhere in the State. This
week the Storybook children will
be examined dentally, audially,
and psychometrically at Memori
al. Results of these tests and
speech therapists’ findings and
recommendations will be sent
home with each child referred
to Memorial from elsewhere.
THE ROUTINE
Many of the Storybook children
come from families eligible for
Crippled Children or welfare as
sistance. Family circumstances
and distance prevent most of
them from coming to Chapel Hill
for regular treatment. Hence,
the six-weeks summer rehabili
tation center.
The first day is the worst.
Parents arrive with their chil
dren, often bringing the whole
family. Some of the cleft palate
children are friendly, outgoing,
talkative, unafraid. , Others are
withdrawn, silent, all but unap
proachable. They are afraid
they will be marked if they open
their mouths.
The parents themselves vary.
Some understand their child’s
problem and what the rehabili
tation center is trying to do.
Others are clearly embarrassed
about having a cleft palate child
at all, and may well be suspici
ous of the camp’s intentions.
According to Irene Terefenko,
a Columbia University graduate
student and one of the center's
three sDeech therapists, the chil
dren whose parents have talked
about and built up Storybook
Farm with enthusiasm are not
homesick. Other children frankly
want to go home. It takes a few
days for everyone to settle down
and learn not to be afraid. For
many children, the center is their
first experience away from pa
rental shelter.
But after a while the camp
grips the children—as the chil
dren do the camp. Cleft palate
children mingle freely with Story
book’s normal day campers.
They get used to one another.
After a few days they are indis
tinguishable to the unfamiliar
eye. The cleft palate children
go through a routine of the
rapy alternated with recreation
throughout the day. Each speech
therapist works with six chil
dren. Each child receives at
least one hour of individual the
rapy every day. Each child al
so takes part in group therapy
daily.
The recreation: swimming, in
the camp's pool, and in the Uni
versity pool twice a week: horse
back riding, boating in the camp
pond, arts and crafts, movies in
Chapel Hill, campouts; and light
farming vegetables are grown
at the camp, the children help
pick the vegetables, then eat
what they have picked.
“They usually get up about six
in the morning,” said Miss King.
"At the end of the day they’re
usually so tired they're just wan
dering around dared."
Recreation also includes the
normal summer camp incidence
of finding garter snakes, captur
ing and befriending turtles, and
other discoveries. The camp has
a ram (named Sam), and Miss
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King's dog, an aquatically-mindod
spaniel named Donnie, has be
come a vital part of boating op
erations. There is also a pony
cart.
THE THERAPY
Actually, the therapy is simpler
than the recreation.
Therapist and child -sit on op
posite sides of a small table.
On the table is a small mirror
with which the child can watch
his own mouth forming sounds.
“Gah," says the therapist.
“Ngah," says the child.
“No, you're giving me 'ngah.’
Try to say ‘gah, gah.' ”
“Gah.”
“Very good, that’s fine. Now
try gah, gay, gee, go.”.
“Gah, gay, gee, go.”
“Hold your nose closed. Gah,
gay, gee, go.”
“Gah, gay . . .”
Therapy takes enormous pa
tience on the part of both child
and therapist. A child’s motiva
tion to learn to speak correctly
often hangs on whether he likes
his therapist. The more likeable
the therapist, the harder the child
tries to please.
The children also work with
each other, practicing speech
sometimes for as much as an
hour and a half at a stretch. Of
-1 ten, when they speak to a mem
ber of the camp staff and inad
vertantly slur a few consonants,
they will stop and correct them
selves.
Therapy at Storybook is mak
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Recreation: Light Farming
ing progress. The children’s
speech is improving, slowly in
some cases, noticeably in others.
' Before" and “alter” tapes of
each child speaking are sent for
analysis to New York at the
end of each session.
The two children at the camp
who stutter are given somewhat
different therapy. They are
taught not the correct forma
tion of .sounds, but control of
the stutter.
"We try to teach them to
stutter in a more acceptable
fashion,” said Miss King. "The
idea is to give them a better
picture of themselves, so they
won't think they're being laugh
ed at when they talk to stran
gers.”
Sometimes the therapy stays
with the child. Next summer the
center is planned for eight
weeks, instead of six, with five
speech therapists and about 25
children. Some of those attend
ing this summer will doubtless
return to the camp for further
therapy, and gradually their
speech will become clearer and
clearer.
In some children, however, the
benefits of the center probably
will be only temporary. Ava is
one of these.
V AVA
Ava is nine years old and an
aphasic. Aphasia is caused by
brain damage, and while an
aphasic may be physically norm
al otherwise, the brain dam
age prevents speech. Aphosics
have to be taught to speak sound
by sound.
When Ava came to the camp
she had no speech at all. She
was completely withdrawn into
a totally uncommunicative world.
She stood with her aims straight
down and crossed in front of her,
her head bowed. She wouldn't
laugh. She wouldn’t look up.
You couldn't get to her.
Now, after four weeks, Ava
has about ten words. She sits in
on the individual therapy ses
sions, listening. She understands
what people say, and she wants
to speak herself, but it is moun
tainously difficult for her to do
so.
Ava has never been to school
because there is no school she
can go to in North Carolina. The
State has schools for deaf chil
dren, blind children, and retard
ed children, but Ava is none of
these. Aphasic children are some
times assumed to be either deaf
or retarded, and are sent to the
wrong school. The speech re
habilitation center is as close
to the right school as the Stats
can come. *
Whenever Ava says something
it is a triumph. The other chil
dren accept the fact that she
cannot speak, but can learn, and
they try to help her.
"They make her ask for things
she wants,” said -Miss King.
Ava responds by trying to
speak sometimes, but ten words
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is a limited vocabulary. The best
that can be done for her is to
let her sit in on therapy ses
sions, and to let the other chil
dren encourage her to speak.
A LITTLE TRIUMPH
Even when not in therapy ses
sions, the other children work
among themselves, and by them
selves, practicing. When some
one says “okay” with a good,
clear K sound, it is another lit
tle triumph.
Little triumphs come at un
expected momonts. Miss Tere
fenko (known as Miss Terry, for
obvious reasons. “If the chil
dren could say her name they
wouldn't belong here,” said Miss
King) has been working with a
little girl who made S sounds
completely through her nose
when she first came to the cen
ter. She had never learned to
' use the tip of her tongue.
“We worked on the S sounds,”
said Miss Terefenko, “and then
she practiced and practiced over
one weekend. The next Monday
I didn't make her work on S
sounds at all, and at the end of
the hour I hadn't even mention
ed S sounds. She looked at me
and very quietly she said,
'Ssssss.’ I didn't say anything,
and she didn't say anything, and
then she said. ‘Ssssss’ again.
“I said, ‘What did you just
say?’
“And she said, ‘I just made
the Ess ssssound.’ ”
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