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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.
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:
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:
age group/average number of times tube inserted
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.
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.
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.
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."
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.