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 W «g|L I ~ $ am JH - m §|sp£| |PF • f ';#»■■■■ i ■ - ': ■ • Fill n * 188 1 HI .■* .<•■ 'iKfPSiH W' " * # liß graEffiMßSM %&k . iMttm&SS&r* Isii mfr mk C -/vg2i §p|® §|| S** Hr y’srW' '■ >I ;.,":. r .y?';t' v ‘ , >’’’"*•? V- •". ,’' ■ JSm HHHBS A Summer Discovery j « rap", 'A If ■ % , ■ M . ATmm HH\ .Zjfagß mi \ jpsß HRHr ■ yku : -u; *• Archery With Miss Terefenko (Right) 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 'tm-4 v- ,' :u| W C<* ‘ i E. ' -jHL ' ■' '- , ' ' ; . - j z j- • w fujH. KlaßMSpair jiSUSiyfl - Hi? . "Tr ,• ] ■if - ta . MiPWJlliiMmMfr’ - - gj a she- mg. J ■ . .a.,. fell, m vKJ 1 jpohlH' 7 sBUHfllBx.« $ fli M , ft ||pp|g' Bp iHPf ft n M m . ;■ Jr& -«r W Ml -mni * i .iaHrWP' WEGIMm b % I A ' l L- 4 H| mm M \ ® ’K HB • - Jt. :-£§■*& Hr 'nil mitm '9H. ’ u 'y ■- I a ▼ Jft t Bv M Hk 1 j| i * Hgglls. ww '»w»i fc»i^fcMiti>cAoaiiftiifiThiifltiv <-y; : *sfcu ~ • v ■ffy'■• ii • The Dog Is Important 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.’ ” Page 1-B