Hearing and Behavior in the Child with Cleft Palate For Parents, From Parents
Prescription Parents has maintained an active interest in the otologic problems of our children; since our formation in 1973 we have encouraged parents to monitor their children’s hearing carefully and urged them to have their children checked by a competent otolaryngologist experienced in the treatment of the patent with cleft palate.
The 1980-81 officers formulated a questionnaire which was sent to our membership. We are grateful to the 184 parents who responded and indicated their observations of the effect of their child’s hearing problems on behavior, personality development, peer relationships, sibling relationships, learning style, etc. This effort was stimulated largely through the interest of Mrs. Mary Carey, a past president of Prescription Parents, who directed and re-directed our attention to the overt and subtle ramifications of the otologic history of the patient with cleft palate. Thanks are also extended to the efforts of the following officers and members whose contributions made this booklet possible: Sandra Lemmo, Judith Eagan, Naomi, Towvim, Rosemarie Sergi, Marion Iantosca, Gael Sullivan, and Priscilla Bradway.
What is a twenty decibel hearing loss? What does a child miss when he cannot hear below the twenty decibel level? How does such a loss affect an infant learning language? What cues do children give us when their hearing is poor? What changes can we observe in their behavior? How does hearing loss affect learning? How is a child’s self-image affected?
With questions like these Prescription Parents began to evaluate the role hearing plays in our children’s development. Recently, far more attention has been focused on the otolaryngologist and audiologist whose diagnoses and therapies are integral to the care plan for the patient with cleft palate. Prescription Parents, however, wished to look beyond the pathology and focus on the impact on our children of fluctuating hearing loss, repeated bouts of fluid, and infection in the middle ear space.
The literature clearly indicates that a mild hearing loss, once considered insignificant, is a serious handicap to an infant learning language and to a child in the classroom. The loss may be serious enough to affect verbal performance on an IQ test or other language-associated measures of aptitude.
From talking with other parents we confirmed that they too had concerns about their children’s behavior patterns during these periods of hearing loss. In 1980, in order to obtain a larger sample, we mailed over 500 questionnaires to parents and professionals. One hundred eighty-four were returned from parents and five by professionals. The project had a three-fold purpose:
to alert parents regarding issues to consider in the child’s otologic history;
to sample the parents’ observation of their children’s behavior and personality changes during periods of hearing impairment; and,
to stimulate research by professionals in the relationship of hearing, behavior, learning style, and personality development.
The following overview is designed to help parents understand their own child’s otologic problems. We have included some material on the ear pathology commonly associated with cleft palate, as well as a summation of the results of parents’ responses to our questionnaire. The parent may find it helpful to give this material to the child’s teacher. We emphasize that the material is not derived scientifically; it is a summation of parental opinion. Prescription Parents would encourage professional research in the various areas highlighted in our study. We recognize that this research is difficult to develop as the variables affecting behavior are difficult to isolate.
Middle Ear Disease
Studies confirm that between 95 and 100% of infants born with cleft palate have fluid present in the middle ear space at birth. This condition, known as middle ear effusion, continues to exist for several years if left untreated — usually from birth until eight or nine years of age. Rarely the problem may persist through adulthood. Normally, the middle ear space is free of fluid and is filled with air through which sound passes from the vibrating ear drum to the tiny bones in the middle ear space and thence to be programmed as meaningful sound through the nervous system to the brain.
This act of “conduction of sound” in the middle ear space is responsible for the term “conductive hearing loss” when the middle ear space does not drain. Fluid collects and impedes the proper conduction of sound through the middle ear space, resulting in a diminished hearing level.
In a person without this fluid condition, the middle ear space is kept clear by the eustachian tube which connects from the ear to tissue just above the soft palate. In infants and young patients born with a cleft palate, this tube does not function properly. Evidence indicates that this eustachian tube function improves with surgical closure of the palate and with age. Several studies, however, have documented persistent problems of this nature into adulthood (Graham, 1978).
We asked parents at what age they felt ear-related problems ha deceased. Of parents responding to the question 50.6%flet that otologic problems had ceased and indicated the ages at which they stopped as:
20.3% felt their child’s ear problems ceased at age 2-4 years;
30.4% felt their child’s ear problems ceased at age 4-6 years;
21.7% felt their child’s ear problems ceased at age 6-8 years;
19.6% felt their child’s ear problems ceased at age 8-10 years.
Conversely, looking at the number of parents who responded that ear problems had not ceased and grouping the answers by the child’s age we found:
70.8% of parents with children age 1-3 years felt their child still had ear problems;
61.3% of parents with children age 4-6 years felt their child still had ear problems;
66.7% of children age 7-10 felt their child still had ear problems;
31.8% of parents with children age 11-14 felt their child still had ear problems;
50% of parents with children 15 years felt their child still had ear problems.
Aside from the serious implications of this fluid retention is the further complication of infection. The fluid acts as a receptive medium for bacteria and the risk of ear infection (otitis media) increases in the patient with middle ear effusion. Fortunately, with aggressive treatment this condition is manageable. Today infants and children with diagnosed and repeated bouts of fluid or otitis media are treated with decongestants, antibiotics, and a minor surgical procedure whereby tiny tubes (2-3 mm) are inserted in the patient’s ear drums. These tubes allow air to pass into the middle ear space and keep it fluid free. The tubes stay in place anywhere from several weeks to two years, with twelve months being the average longevity. Parents in our study reported that
14.3% of the children had tubes at least once in the 0-12 months group
52.3% of the children had tubes at least once in the 1-3 year group;
79.0% of the children had tubes at least once in the 4-6 year group;
63.3% of the children had tubes at least once in the 7-10 year group;
60.0% of the children had tubes at least once in the 11-14 year group;
25.0% of the children had tubes at least once in the 15 plus year group.
These figures show the fairly prevalent use of tubes in those children who are under fourteen. In the older group (age 11 plus years) the 25% figure is low in contrast to the new emphasis on otolaryngology in the younger children (age 0-10 years). In fact, parents reported aggressive use of tubes:
age group/average number of times tube inserted
The parent of an infant born with a cleft palate should have the infant’s ears checked regularly by an otolaryngologist with a pneumatic otoscope. (An instrument which not only illuminates and magnifies the ear space, but also allows the specialist to cause the drum to move with an expression of air so that the presence of fluid behind the drum becomes evident). Often a parent is surprised by the finding of fluid in the infant’s ears as he/she was not aware of any hearing difficulty. since the presence of fluid does not cause gross hearing impairment, the infant probably still responds to voices, the telephone bell, the television, etc. After the fluid is drained surgically and the minute tubes are inserted in the drums to aerate the middle ear space, parents frequently report an increase in baby’s responsiveness and language acquisition. Learning language is one of the most difficult tasks for an infant; an infant with even a mild hearing loss (15-25 dB) is probably at some disadvantage in trying to decipher our complex verbal system.
Effect of Fluid and/or Otitis Media on Infants
Probably the most significant impact on an infant is the difficulties presented in learning language. The chart included at the end of this booklet indicates the levels in decibels of various sound-producing mechanisms. In judging the impact on an infant, however, the processing of meaningful sounds (i.e. words) must not be forgotten. if certain sounds, particularly those in the higher frequency ranges (e.g., /s/) are missed consistently and others are blurred, the normal pattern of sounds in any given language is difficult to process. Thus a 20 decibel hearing loss in an adult who has mastered language already, cannot be compared to the same loss in an infant.
Another consideration is social development of the infant and toddler. If verbal communications are difficult, then the infant does not associate it with pleasure. If the infant cannot give or receive pleasure in this way, the baby may become quiet and withdrawn. Since the baby finds little happiness in communicating verbally, he may cease to try and others may respond less often. The child, on the other hand, may become frustrated and use unstructured sound to demonstrate frustration. Thus, it is doubly important to stimulate our children verbally, particularly if the fluid problems have been severe.
Since many parents (625% of those with children between 1-3 years) report a drastic change in the behavior of their children following a M and T procedure (myringotomy and tubal insertion), one might suspect the frustration of hearing loss in infants and toddlers to be a cause. Of parents with children ages 1-3, 53.9% reported that their children used physical means to communicate when hearing was depressed and 69.2% of these parents reported the speaking voice was louder. In the group of parents with children ages 1-3 years, 70% of parents also indicated their infants became more demanding. Another possibility that these figures suggest is that the children’s behavior may cause frustration on the part of the parents.
Only 20% of the parents with children age 1-3 years saw “no change” in their toddlers at home. While some (20.8%) described their children as “withdrawn” and “passive,” 50% saw the children as “argumentative” and “easily frustrated.” When hearing was depressed, 55.6% reported “more bickering” in the home at this age. (1-3 years).
Thus the importance of frequent checks on the child’s hearing is obvious. Since the hearing loss is not severe, the parent must look for subtle signs that the child is having a problem. So often the parent realizes the degree of hearing handicap only after the fluid is removed.
Hearing Problems in Pre-Schoolers
Prescription Parents has spent much energy on this age group in advocating for programs for pre-schoolers under Chapter 766 (the Massachusetts Special Education Law, similar to PL94-142). During this time, ages four to six years, children begin to form social relationships with peers and begin to see themselves apart from their families. At this time the early development of a child’s self-image and self-confidence need careful attention. Prescription Parents believes that our children, who are subject to problems with speech and/or cosmetic appearance, need particularly sensitive relationships in this stage of development so that their self-confidence and self-image will become strong and well-founded. Entry into school will increase peer demands in the areas of verbal communication and appearance, two areas where social judgements are common.
For these reasons, Prescription Parents strongly endorses a pre-school program for children with cleft lip and palate. In a regular classroom setting these children will gain social confidence under the direction of a sensitive and skilled teacher. The parents should inform the teacher of the child’s medical history with particular attention to speech and otologic histories
In a child who is not hearing well, a play pattern may develop which weakens self-confidence. The child may not understand the teacher or student explaining a particular game or activity. As a result (s)he may not choose to participate or may need to look to another student to imitate appropriate behavior. In this way the child see him (her)self as a follower, not a leader. If the teacher is not sensitive to this problem, the pattern maybe reinforced to the point where the child’s self-image and self-confidence are weakened.
Similar to behavior patterns reported by parents of infants and toddlers in our survey, parents of pre-schoolers (ages 4-6) also indicated marked changes in behavior when the child’s hearing was depressed. Seventy percent reported some change in social behavior; 15% described behavior with peers as passive, withdrawn, whereas 55% found the child argumentative and easily frustrated. In our survey 61.3% reported these latter two characteristics in behavior in the home; 76.9% of parents reported additional difficulty in their child’s response to parental discipline. When asked about the effect of hearing problems in social situations, 52.6% found negative behavior exhibited by peers toward the child, whereas 47.4% reported no change in the peer’s behavior.
How do children adapt to a hearing loss? Parents gave us many clues. One mother noted that her pre-schooler required more body contact when his hearing was depressed. Another indicated that her child tries to look the speaker in the face, a habit that may persist even when the child’s hearing returns to a normal level. this habit may cause problems when the child is listening in a busy classroom and the speaker is not easily identified. Children who are subject to a hearing loss may develop a habit of not listening because the effort is so great. Even when the child’s hearing improves (after treatment with tubes, for example) he/she may still persist in inattentive listening habits. The parent should call this to the teacher’s attention and the speech therapist may want to offer some therapy in listening skills.
Also studying responses of parents of children in this age group, their observations about lo0ud, aggressive behavior in the home and with peers is consistent with their perception of their children’s response to a classroom situation. Only 26.1% reported “no change” in school, whereas 60.8% indicated some effect on classroom behavior. (The remaining 13.8% indicated they did not know.) Of those demonstrating a change (60.8%) 30.4% reported the change to be toward noisy behavior, boisterous, clowning behavior, while an equal number (30.4%) saw withdrawn, quiet behavior. These two extremes of behavior are documented several items by parents: one commented that her child tried to become the center of attention so as to control the situation. Another said, “My child speaks louder hoping others may do so as well.”
It is in this age group that children may become aware of their hearing impairment. Some children may honestly be unaware of it even through the primary grades of school, but parents document some rather clever ploys by children to avoid detection. the parent (and teacher) must try to help a child resorting to “covering up” his/her hearing loss.
Excluding responses form parents of children ages 1-3 years, according to parents’ responses the survey showed 46.2% of the children were aware of their hearing loss by age 6 years and 61.5% by 8 years. Focusing on the pre-school group (ages 406), 25% of the parents felt their child covered up his hearing loss in some way. Of those, 50% indicated the child would “give any answer” when asked a question, 25% said the “child would appear involved elsewhere,” and the remaining 25%said the child clowned around to distract attention from the matter at hand. In addition to medical treatment for the ear problems, these behaviors need some discussion between parent and teacher. Also a discussion with the child offering suggestions for appropriate behavior when he/she cannot hear is helpful. The child needs help in developing confidence to request additional reinforcement of learning when she/he cannot hear well.
The Elementary School Years
At this point many children may begin to outgrow their ear-related problems. Parents in our survey indicated that the ear infections were the worst in the pre-school years, but that the fluid problems continued for several years. Parents are again urged to continue regular checks with the otolaryngologist, even when infection symptoms cease, as the fluid in the middle ear space can still pair hearing and lead to damage of the middle ear bones if left untreated.
many of the children with clefts are beginning to tire of hospital procedures — visits, therapies, etc. by school age and the suggestion of this problem i.e., hearing. is more than they want to cope with. It is certainly the least “visible” of their problems, and they may be tempted to deny it (and many times honestly be unaware of it) in the pre-school and primary grade years. A teacher is wise who does not call attention to the child because of his/her hearing problem, but works with it. For example, if the teacher has frequent reason to use a record player and wants to be sure a hearing-impaired child can hear the record, he she might ask this child to be in charge of the player. In this way, the child is “honored” in front of his peers, yet the teacher manages to seat him near the phonograph. If a teacher is not helpful, parents will have to be innovative and take the lead.
Parents of school age children seem to feel their children have the greatest difficulty when grouped with older children who may react immediately to their speech or cosmetic appearance. In the age groups in our survey (7-10 years, 11-14 years, and 15 plus years), this perception is documented by 63% of the parents. A child is better equipped to deal with these pressures from older children after having had a successful, confidence-building pre-school experience.
Why are children, particularly those with hearing problems, demonstrating these patterns of behavior? During this period of child development intense peer testing and interaction is developing. Children are forming relationships — including and excluding certain children from various reasons, usually superficial ones. Seventy-five percent of the parents in our study report that their children exhibit behavior changes when interacting with peers and when their hearing is poor. Parents report that incidents of teasing by older children are more likely to occur in unsupervised areas, e.g., the lunchroom, playground, schoolbus, than in a classroom. As a child grows up with a group of friends, he is accepted as he is. When his circle of friends widens, as frequently happens when more freedoms from the immediate neighborhood are allowed, the risks are greater. The parent must allow the child to take these risks. The child must depend upon a strong sense of himself and a confidence in himself developed early in the home and early school years, teamed with the friends he has made, to bring him through the inevitable conflicts of childhood.
An interesting personality dynamic occurs in this age group. Whereas the infant, toddler, and pre-school child tend toward aggressive, demanding behavior when hearing is depressed, the 7-10 year old seems equally apt to adopt a quiet, sulky, withdrawn posture during period s of hearing impairment. Equal numbers of parents (32.2%) indicate a quiet, sulky, sullen pattern of behavior, as report aggressive, demanding behavior at home. Only 21.4% can see no change at home. Similarly, 65.4% saw additional difficulties in reaction to parental discipline when the hearing was depressed.
All children begin growing away form home during this period — many become quiet and withdrawn at home; others have problems with peers; many may demonstrate little effect from this separation. Children with clefts are no different in many of these respects. We must help our children to see this. It is important to remember that they are “different” in a few ways, but are similar to their friends in many more. The more successful parents are in guiding their children away from seeing the cleft as the center of their “growing pains,” the easier the child’s entrance into adolescence will be. The pre-adolescent’s perception of the cleft as the cause of all his/her social ills, however, can be very realistic to him/her and should not be minimized.
At this point, in the habilitation of the child born with cleft palate, so many issues, e.g. cosmetic revisions, orthodontia, etc. begin to crowd the picture that hearing might be pushed far behind. Most children have outgrown eustachian tube malfunction by this time. For those who are still having fluid problems, the difficulties of adolescence are compounded Students entering high school and studying a second language may find additional difficulties. Here a parent must exercise considerable diplomacy in helping the student discuss his/her special needs with his/her teacher.
Although this group may be small (11/48 or 22.9% in our survey), their needs in adolescence are complicated by their hearing problems. The emphasis by teenagers on appearance and conformity places enormous pressure on children with clefts; the hearing problem may compound his efforts at social acceptability, so important in these years. Parents reported increasing withdrawn and passive responses in social situations as well as at home this development seems to be well-documented in our survey: younger children (10 years and younger) tend to react with aggressive, demanding behavior, whereas older children become more withdrawn and quiet. parents also note marked increases in difficulties between parent and child in the 11-14 year old group, particularly when hearing is poor.
Parents report that in the older age group children tend easily to feel inferior, hurt, defeated, and resent correction. Teenagers are usually aware of their hearing loss — parents document that 6/22 or 27.3% attempt to cover up for their hearing loss. (Nine reported that they did not cover up and seven reported that they did not know). Rather than the clowning and attention-calling behavior of the younger children, teens try other ploys, notably giving any answer to focus attention to another topic or by appearing involved elsewhere. One teenager who also complete a questionnaire for us said, “I try to talk most of the time to avoid having to worry about listening.”
While such clinical attention has been focused on the cosmetic and speech habilitation of the child born with cleft palate, little attention has been paid to the implications of the otologic histories of these patients. One cannot separate the problems caused by cosmetic, speech, and hearing concerns, but the latter should not be overlooked in developing analyses of behavior and psychological development of the patient with cleft palate.
Parents are the guides for much of this development; parents and patients need to understand how the various aspects of the cleft affect the individual’s perception of himself. How much of that perception is formed in the mother’s and father’s arms, how much in the pre-school years, how much in the elementary grades, and how much during adolescence and young adulthood are individual. We as parents can only provide the strongest support and love as possible during each stage of development.
Looking back on their youth, the strongest memory of many adults is the role of their parents. Those of us guiding children with special needs must not forget the importance these “differences” in our children may be in their own eyes. We are eager to assure our children that they are not essentially different and to lay to rest our own anxieties, as each step in our child’s therapy closes another chapter in his/her habilitation. The book is never closed completely for him/her. Because communication skills are at the center of our children’s problem, they may feel doubly insecure. We must never minimize their feelings but help them to see each age as a progression toward adulthood and a recognition of self that we helped to shape so long before.
The following are suggested reading for parents; a complete bibliography for parents is available in Perspectives Concerning Cleft Lip and Cleft Palate, also published by Prescription Parents, Inc.
Bleilberg, Aaron H., Ed.D. and Leubling, Harry E., M.A. Parents Guide to Cleft Palate Habilitiation. New York: Exposition Press, 900 South Oyster Bay Rd., Hicksville, NY 110801, 1971.
Brookshire, Bonnie L., Lynch, Joan I., Fox, Donna R. A Parent-Child Cleft Palate Curriculum. Oreson: CC Publications, c1980.
Graham, Malcolm D., M.C., ed. Cleft Palate Middle Ear Disease and Hearing Loss. Illinois: Thomas, c1978.
LaPorta, Ria A., McGee, Donald I., Simmons-Martin, Audrey, et al. Mainstreaming Preschoolers: Children with Hearing Impairment. DHEW Publication No. (OHFS) 78-31116, n.d.
McLaughlin, Loretta. “Minor Hearing Loss Becoming a Major Problem,” in Boston Globe, May 9, 1976, Section A17.
Ross Laboratories. Cleft Lip and Cleft Palate (Educational Aid No. 11). Ohio: Ross Laboratories, 625 Cleveland, Columbus, Ohio 43215.
Westlake, Harold and Rutherford, David. Cleft Palate. New Jersey: Prentice-Hall, 1966.
Wicka, Donna K., M.A., and Falk, Mervyn, Ph.D. Advice to Parents of a Cleft Palate Child. Illinois: Thomas, 301-327 East Lawrence Avenue, Springfield, Illinois, 1970.
Wynn, Sydney K., M.D. Team Approach to the left Lip and Cleft Palate Child. Wisconsin: Milwaukee Children’s Hospital, n.d. ($.25)
How Loud is Loud?
It is recommended that children with clefts have their ears checked regularly by a competent otolaryngologist and similarly have their hearing tested. Frequently, the audiologist will tell the parent that the child is hearing at a certain “decibel” (abbreviated dB) level; unless you know what this means, you still may not be clear as to the ability of your child to hear. The following levels may help you interpret the information given to you by your child’s audiologist.
140 — shotgun blast, firecrackers
130 — riveting air-raid siren
120 — threshold pain, some auto horns, amplified rock band
110 — jet plane fling overhead, thunder
100 — power mower, woodworking shop, chain saw, motorcycle, snowmobile
90 — blender, subway
80 — garbage disposal, dishwasher, window air conditioner, alarm clock
75 — electric shaver
70 — electric typewriter, vacuum cleaner, noisy restaurant
60 — normal conversation, singing birds
55 — average clothes dryer
40 — quiet office, refrigerator, floor fan (to 70 dB), library
30 — quiet neighborhood, soft whisper from 5 feet away
20 — rustling leaves
10 — normal breathing, faintest sounds an adult can hear
Of course, these sounds may vary depending on the source and the distance of the listener form the source of sound.
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