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THE POSTISSUE #1, Rev 5 THE PARENT NETWORK FOR THE POST-INSTITUTIONALIZED CHILDSpring, 1995 THE PARENT NETWORK FOR THE POST-INSTITUTIONALIZED CHILD was created to connect families throughout the United States and Canada who have children who came from the maternity hospitals, orphanages, institutions for the irrecuperable or "street children" of economically-deprived countries. Many children who came from these circumstances are exhibiting a variety of problems, particularly emotional and psychological disturbances (such as aggressive or passive behavior; autistic-like behavior; and attachment bonding problems), developmental delays and learning disabilities (such as hyperactivity; expressive, receptive and articulation language disorders; and cognitive disorders), as well as medical problems like Hepatitis B and D, FAS/E and cleft palate. We are not experts in any of these matters, but we have spent considerable time and expense to investigate the root causes of these disorders and their treatments. We are the parents of severely delayed children ourselves. We are attempting to create a network of parents to share information on medical centers, doctors, psychiatrists, psychologists and therapists who recognize the unique disorders created by an infant history of privation. Since the inception of the Parent Network (PNPIC) in 1993 we have been contacted by over 2,000 of families and professionals. We have planned several conferences and have provided parents with information critical to their child's development. Since we are no longer able to respond individually to the volume of requests for information, we have compiled this newsletter to help you understand the effects of institutionalization and possible avenues of help. Other editions of the newsletter contain articles written by professionals which address, among other topics, medical, social, psychological and educational issues and treatment strategies for "our" children. We must remember that our children were "victims" and we have learned that there is no quick fix or miracle cures - it will take time and patience and persistence and understanding. You are not alone! This newsletter provides straightforward information about the effects of institutionalization. It is not good news. The PNPIC does not endorse or advocate any particular form of therapy or treatment, any program, or any care provider. Information disseminated through our newsletter is provided simply to keep you apprised of the most current information and ideas that we hear of related to the particular needs of post-institutionalized children, and to respond to requests for information from our subscribers. All the best, Thais Tepper, Lois Hannon, Lily Romine & Carol Jansson Co-Founders of the Parent Network The Parent Network For The Post-institutionalized Child P.O. Box 613, Meadow Lands, PA 15347 USA Voice Mail 412/222-1766; Fax 770/979-3140 E-Mail: PNPIC@aol.com OVERVIEW OF THE POST-INSTITUTIONALIZED CHILD"Environmental impoverishment leads to behavioral impoverishment. It produces palpable reductions of behaviors. This is not to say that it produces mental deficiency; but it does produce symptomatic syndromes which are severe enough to make diagnosis difficult and to call for therapeutic intervention". This quote came from the book, Developmental Diagnosis, written by Arnold Gesell and Cathrine Amatruda of the Clinic of Child Development, Yale University of Medicine. The surprise is that this statement was published 54 years ago. Opportunities to study the role of extreme maternal neglect on the development of children are exceedingly rare in the last decade of this century. This was not so in 1940's and 1950's and an enormous body of work was created from the study of children in orphanages, foundling homes and nurseries for the babies of mentally ill women and prisoners. Dr. John Money, in his book The Kaspar Hauser Syndrome, cites the paper entitled "Personality distortion and early institutional care" (1 940) by Lawson G. Lowrey, a child psychiatrist, wherein Dr. Lowrey discusses the personality problems manifested by children who had been institutionalized for the first 3-3 1/2 years of their lives. "Halt or more of these children Lowrey rates as having 'symptoms of inadequate personality development, chiefly related to an inability to give or receive affection; in other words, inability to relate the self to others - the isolation factor'." He further describes the symptoms of inadequate personality development, as follows: "Hostile aggressiveness, temper tantrums (often of exceptional violence), e nuresis (often as a regressive phenomenon on placement), speech defects (ranging to near mutism), attention demanding behavior, shyness and sensitiveness, difficulties about food (refusal, fussy, slow eating, refusing meat, voracity), stubbornness and negativism, selfishness, finger sucking and excessive crying. Other, somewhat less frequent problems were: over affectionate and repelling affection, overactivity, seclusiveness, submissiveness, difficulties in school adjustment, sleep disturbances, fears and soiling." The effects of bleak care taking environments were studied by Rene Spitz and William Goldfarb in 1945. Spitz was a consulting doctor at a foundling home whose infants wasted away and died from a condition called marasmus. He discovered that despite hygienic surroundings and a nourishing diet, the babies received minimal stimulation from the social and physical environment. Spitz showed that mothering is essential to healthy psychological development and to life itself. Similarly, Dr. Goldfarb's comparative studies of children cared for in institutions and those removed to foster homes showed abnormal development in the institutionalized children in the areas of intelligence, motor coordination, behavior and language. He used the phrase "primitivization of the total personality" to epitomize the conspicuous lack of development in emotional organization, social relatedness and ability to conceptualize. Goldfarb's continued studies of children removed from orphanages and adopted, showed that these children suffered from long term effects of privation - the absence of appropriate stimulation - as manifested in indiscriminant affection, extremely demanding or attention-seeking behaviors, social unrelatedness with peers, autistic-like behaviors, hyperactivity, aggression (including acts of cruelty), temper tantrums, no cause and effect thinking, and no concept of time, past or future. In the late 1940's John Bowlby continued the study of the importance of the developing relationship between an infant and the person he most frequently interacts with. This emotional relationship is called attachment. Attachment results in the feeling of emotional security in the infant who regards the primary caretaker as a secure base from which to venture forth and explore his surroundings. In 1951 the World Health Organization published Bowlby's monograph, Maternal Care & Mental Health. John Bowlby went on to study the growth of interaction of behavior between the baby, as it smiles, cries, clings, nurses and so on, and the care giver. The reciprocity and sensitivity of the care giver to the baby's cues and signals allows the child to bond - that is, form a selective attachment to that care giver. Mary Ainsworth's research focused on the way a child used his mother as a foundation on which to build new experiences. A securely attached child, bonded to a care giver, is free to explore his environment and learn new skills. Ainsworth's study of attachment spanned many years, but her essay on institutionalization was published by the World Health Organization in 1961, in Maternal Deprivation Reassessed. In 1962, Doctors Sally Provence and Rose Lipton, of the Yale Child Research Center, wrote the definitive work on institutionalization. Their study revealed why the deprived infant failed to look to anyone to maximize pleasure and minimize pain- because no one had provided the appropriate sensory stimulation, contingent reinforcement and prompt relief of stress. Infrequent experience with caretakers hampers discrimination and the pleasure of recognition. Since no secure attachment existed, all developmental milestones failed to appear normally. In the conclusion of their study, Infants in Institutions, Provence and Lipton found that in the areas of social emotion development, the institutionalized child showed impairment in the following areas:
The effects of sensory deprivation in animals was the subject of numerous clinical studies in the 1940's-1950's. Ashley Montagu, the anthropologist, determined that touch had the utmost important in predicting the later behavior of animals, especially humans. When deprived of the comfort of this stimulation, abnormal behavior patterns were noted. The famous Harlow's monkeys experiments in 1969 indicated that maternal touch and comfort were essential for normal development. The work of Tiffany Fields, at the Touch Research Institute at the University of Miami, indicates that when tactile stimulation (massage) is applied to infants, their performance improves on developmental, motor, and cognitive behavioral standard assessment scales. Some families have found that massage therapy, cranial-sacral therapy, or myofascial release is beneficial in managing child behavior. More information may be obtained from The Upledger Institute (407/622-4706), The American Massage Therapy Association (708/864-0123) or The Myofascial Release Treatment Center (800/FASCIAL). In the 1970's, Jean Ayres, a psychologist also trained in occupational therapy, identified Sensory Integrative Dysfunction, as a neurological disorder that resulted in inefficient organization of sensory input received by the nervous system. Children who were deprived of touch, movement, sound and other normal sensory input may exhibit SID. Some of the characteristics are as follows:
Our knowledge of the effects of sensory deprivation on orphanage children has been greatly advanced by the work of Dr. Sharon Cermak, Professor of Occupational Therapy at Boston University. Her volunteer work at Bucharest No. 1 lead to the publication of Romanian Children Show Sensory Defensiveness. Sensory Integration International (310 320-9989; FAX 310 320-9934) can provide the names of occupational therapists in your area who can evaluate your child for SID. Obtaining the book, Sensory Integration and the Child from the library or from Sensory Integration International will be helpful. In many orphanages in economically-deprived countries, children had multiple care givers who, through understaffing, ignorance and disinterest, tended to their needs with as little contact as possible. Rooms were bare of stimulating mobiles, toys or music. Children may even have been sexually abused and others beaten. Active children may have been tied to keep them in one place. Certainly, all the past researchers in the field of child development would agree that these conditions would create long-term effects on the children that lived through them. The DSM 111, the psychiatric reference book, gives the diagnosis ofReactive Attachment Disorder in Infancy and Early Childhood to describe the symptoms of children who have endured severely pathogenic care. Pathogenic care is described as disregard for the child's basic emotional needs for comfort, stimulation, and affection. Repeated and frequent changes of the primary care giver so that stable attachments are not possible is also a factor. The symptoms include lack of weight gain (failure to thrive), poor motor development, failure to make eye contact, poor muscle tone, failure to establish vocal communication, feeding disturbances, sleeping disturbances, hypersensitivity to touch and sound, persistent failure to initiate or respond in an age-expected manner to social interaction, indiscriminate sociability (excessive familiarity with strangers and displays of affection), repetitive behaviors that are non-functional (body rocking, headbanging, hitting or biting oneself, teeth grinding, eye poking, thumb or finger sucking), repetitive non-functional vocalization (animal noises, trilling, screeching), creating self-stimulating behaviors (pressing of eyeballs, directing eyes to a strong light source, smelling objects), and susceptibility to infection (respiratory and ear infections). (Note: In the DSM IV the symptoms listed for this diagnosis have changed slightly.) Brain physiology studies have indicated that early stimulation guides the process by which neurons and synapses develop in an infant's brain. An adverse social environment activates the production of hormones that adversely affect brain function, including learning and memory. These effects may be permanent. The research provides a scientific basis for the long recognized fact that children who experienced extreme stress in the earliest years are a greater risk for developing a variety of cognitive, behavioral and emotional difficulties. Dr. Bruce D. Perry, a child psychologist , in his article which appeared in the Spring 1993 issue of The Advisor, discusses the potential neurodevelopmental devastation resulting from affective, tactile and emotional undernourishment. He states "Children raised with little or no exposure to verbal language never develop the neural apparatus needed for optimal speech or language development (Mason, 1942; Freedman, 1981); children raised in sensory-deprived settings have major deficits in developing integrated neurosensory processing (e.g., Davis, 1940; Freedman and Brown, 1968); children with various visual deficits (e.g., strabismus) develop abnormal visual perceptual and association capabilities (e.g., Lipton, 1970; Bishop, 1987; Freedman, 1992)." Dr. Ronald Federici, a neuropsychologist with 15 years of experience in the evaluation of post-institutionalized children from economically-deprived countries, believes that issues that also seriously affect brain development include: pre and post natal care, the effects of alcohol and smoking by the mother, exposure to environmental pollutants such as heavy metals, pesticides and radiation in Russia. Fetal Alcohol Syndrome and Fetal Alcohol Effect must be strongly considered in the case of Russian, Ukrainian, former Soviet Bloc countries and Poland. Prenatal exposure to alcohol causes central nervous system damage evidenced by mental retardation, attention deficit, learning disabilities, seizures, developmental delays or behavior disorders. Contact The National Resource Center for Special Needs Adoption (810 443-7080); FAS/E Newsletter, P.O. Box 74612 Fairbanks, Alaska 99707 (907 456-1 1 01); or contact The National Organization For FAS, 1815 H Street NW, Suite 750, Washington, D.C. 20006. Attachments are reciprocal and frequent cyclical interactions that can be observed in the relationship that develops between a care giver and child. An infant learns to rely on the care giver to meet his needs. After numerous cycles of need and satisfaction have been completed, the child develops a sense of security and trust and will become attached to the person completing the cycles. In institutions, needs were not met in a timely fashion and infants remained soiled, hungry and cold for long periods of time. The child would lack trust, have little security and lack attachment. Such a child is often referred to as having an attachment disorder. Mary Ainsworth developed a laboratory experiment, called the Strange Situation, in which the quality of a child's attachment could be determined. Three categories of children who demonstrated distinct behavior patterns were labeled: The securely attached, who sought their mother when distressed, who seemed confident of her availability and were comforted by her embrace; the avoidantly attached, who were less independent, who were demanding and clingy, yet might ignore the mother completely at times; and the ambivalently attached, who tended to be the most overtly anxious and who, like avoidant children, were clinging and demanding and who, like the secure child, was upset by abandonment but could not be soothed by the mother when distressed. L. Alan Scroufe, a research psychologist at the University of Minnesota Institute of Child Development, created the following classifications:
Oft times the Foster cline model of the non-anached child is usedby therapists who specialize in the treatment of attachment distordered children. These children may exhibit some or all of the following symptoms: (see High Risk: Children Without A Conscience by Dr. Ken Magid & Carol McKelvey).
As older children arrive from Russia and other former Soviet Bloc countries, two other behavior types have been recognized. From The Child Welfare lnstitute's publication Assessing Attachment, Separation and Loss comes the following description of the overcompetent or parental child. "Children exhibiting this behavior seem to prefer to take care of themselves and don't need the care of parents. They frequently attempt tasks beyond what would normally be expected for their age level. Although this behavior may seem desirable, it creates barriers to closeness and to a positive relationship with parents or other adults. The self-parenting child does not provide a parental role to the parent. This child frequently assumes the parental role over the parent and may also take on the responsibility for younger children. This behavior may also be seen in children who are resisting attachments made prior to the adoption. For the adoptive parent who desires the parenting role, it may be difficult to cope with the rejection of positive interaction and efforts to meet the child's needs." From the same publication, The Two and Twenty Syndrome. "Vera Fahlberg describes this syndrome as evidence in certain children who at times appear too old for their ages and at other times act too young or immature. These children prefer to interact with older children and to become involved in their activities. When they are placed with younger children, they want to be in charge. These children do not easily accept restrictions on their behavior and attempt to be as independent as possible. Children who exhibit this syndrome in conjunction with over-compentency tend to appear more mature than they really are. They may be accorded privileges or be given greater responsibilities than other children their age. Parents may have higher expectations for these children. When limits are set on their behaviors they may revert to temper tantrums and other behaviors expected of much younger children." Most children taken from Romanian institutions exhibited, upon arrival home or continue to exhibit, symptoms of Reactive Attachment Disorder in Infancy and Early Childhood, Attachment Disorder and Sensory Integrative Dysfunction. Russian children appear to be higher functioning, but many children are exhibiting attachment issues, also. Today's pediatricians and psychologists, unaccustomed to seeing institutionalized children, simply fail to recognize the characteristic behaviors. It is not unusual to have numerous evaluations without the proper diagnosis being made. The Parent Network can help you make educated choices when searching for services for your child. Therapists who understand and treat attachment disordered children are difficult to locate. It is imperative that the psychologist or Licensed Social Worker you select has worked with attachment disordered children and traumatized children, and thoroughly understands the issue. Depending on the specific background of care giving your child received prior to and during institutionalization, you may chose from various types of therapy. For more severe problems you may wish to consider rage reduction therapy or holding time. A more gentle approach is through play therapy such as Theraplay (several PNPIC members have had success with this program). Please fully research any therapy you may consider and discuss it with the professionals that are dealing with your child. For more information regarding attachment therapies contact ATTACH, 2775 Villa Creek #240, Dallas, TX 75234 (214 247-2329), or read Holding Time by Martha Welsh, M.D. (Tapestry Books 1-800765-2367) or contact The Theraplay Institute in Chicago (708 2567334). Dr. Vera Fahlberg, in her book A Child's Journey Through Placement. states "...the symptoms we noted in research studies of children raised without primary care givers were similar to those seen in children with Attention Deficit Disorder. Children who show developmental delays or any behavioral problems should be screened for visual or auditory problems, speech difficulties and gross motor delays. They are too common to ignore as possible cause of problem behaviors. By understanding a child's problems in processing stimuli, an adult can help clarify misperceptions and aid the child in developing a better understanding of himself and the world. In general, children with perceptual problems have difficulty handling changes in their environment or routine." Perceptual skills (analysis skills) involve the capacity to look at and/or listen to patterns of sensations (meaningful information) analytically, specifically to identify concrete (sensory) structural components and the way these components interrelate. Children deprived of normal environmental stimulation in infancy and early childhood will experience impairments in perceptual skills. Dr. Jerome Rosner's research into perceptual skill disorders lead him to the theory that emotional and behavioral problems in many children were related to their inability to process audio and visual stimuli. In his book, Helping Children With Learning Difficulties, he postulated that children who could not properly process what they heard or saw would be diagnosed with ADD or ADHD and treated with drugs. Without therapies that address the specific perceptual problems, drugs alone will not improve the child's achievement levels. In Infants in Institutions, Provence and Lipton noted that institutionally- raised infants had depressed language behavior by the second month. Earliest signs of disturbance were diminished output and lack of musical, cooing vocalization. The nursery, they found, was startlingly quiet. Barbara Tizard, University of London, continued her study of English residential nurseries throughout the 1970's. Variables in language development among children raised in 22 different nurseries were dependent on the staff-to-child ratio and the quality of the staff's verbal response to individual children. In institutions where staff was occupied by housekeeping duties and response to children was minimalized, the most significant impairment was found. Impairment in the development of the native language will affect the ability to function in English. Speech and language disorders are, indeed, common. Diagnoses of Receptive and Expressive Language Disorders, as well as articulation and dysfluency problems are often seen. When a speech and language evaluation is performed, it is important to ask specifically about Central Auditory Processing Disorder. CAPD refers to the limitations in the ongoing transmission, analysis, organization, transformation, elaboration, storage, retrieval and use of information contained in audible signals. It may involve the listeners conscious and unconscious ability to filter, sort and combine information at appropriate perceptual and conceptual levels. Children may score well on standard picture vocabulary tests, but often have a difficult time responding correctly to multiple commands, sequencing and answering questions. These issues may lead to the psychological misdiagnosis of Conduct Disorder because children do not follow verbal commands. Difficulty in reading comprehension or math skills may be apparent. Auditory processing difficulties can be caused by chronic ear infections and auditory deprivation. Children may be hypo or hypersensitive to sound. A child may intensely dislike the sound of a hair dryer, vacuum cleaner, lawn mower, etc. Sounds that may be ignored by the parent are often noticed by the child, such as a high flying jet or a far-off train. In the school setting, nearby traffic, another classroom's activities or other extraneous sounds may cause the child to lack focus in his own classroom. Auditory Integration Therapy (AIT) consists of auditory stimulation using specially selected music processed through a special machine which modulates, randomly, different frequencies present in the music. It has been shown in the past that the auditory system can reorganize itself when stimulated repeatedly with different frequencies of sound. In the newly published book, Dancing in the Rain by Annabel Stehli, Chapter 12-Asia, tells the story of how AIT was used to treat a post-institutionalized adoptee from Korea. For more information, send a stamped, self-addressed envelope to Autism Research Institute, 4182 Adams Ave., San Diego, CA 92116, contact the Georgiana Society, Box 2607 Westport, CT. 06880 (203 454-1221) for information on the Berard Method of AIT, or contact The Spectrum Center, 4715 Cordell Ave., Bethesda, MD 20814 (301 657-0988) for information on the Tomatis method of AIT. Local autism societies exist in most states and will send you an informative package on AIT material. (Beware, AIT is considered by some professionals to be a controversial method of treatment. This is primarily based on the fact that there is not a lot of published clinical data at this time on the effects of AIT). Closely associated with language and motor skills development is visual perception. Lack of appropriate visual stimulation in infancy will affect the degree of neurophysicological sophistication in ocular pursuits, fixations[ skills, muscle fields, convergence and divergence patterns and sufficiency of compensating oculomotor skills An individual with good eyesight can have undiagnosed vision problems that make it difficult to comprehend the visual message. Evaluation by a Behavioral (Developmental or Functional) Optometrist is imperative. Once a diagnosis is made, vision therapy can be used to help retrain the visual perception system. Brochures about visual perception issues and referrals can be obtained by contacting the Optometric Extension Program (714 250-8070). Listings should also be available in your phone book under Optometrist (Behavioral). There is a window of opportunity in which to effectively treat the damage done by maternal and sensory deprivation. Do not believe that your child's problems will disappear with time. Early evaluation and therapy is imperative. When placing your child into a school program, issues involving post-institutionalized children are very complex and the input of your child's private therapists should be enlisted when preparing an IEP. If possible, private therapists should be a part of your child's MDE team. It is of the greatest concern to the original network members that families that are now adopting in do not experience the same difficulties that we have endured. The emotional burden of living with some of these children is taking its toll. The draining of financial resources to provide the necessary therapies can create an insurmountable crisis. We hope that all who intend to adopt children from institutions in other countries are prepared for the possibility of providing long-term and costly therapies for their children. Please write to the P.N.P.I.C., Box 613, Meadow Lands, PA 15347, for more information on the Parent Network. Parent Network members volunteer their time to telephone counseling and mailing requested information. We are not compensated for our time, telephone calls or expenses. Any small donation you wish to make to help defray the cost of operating the network would be appreciated. SUGGESTED READING CLINICAL IMPLICATIONS OF ATTACHMENT, Jay Belsky & Teresa Nezworski, Lawrence Eribaum Assoc., 1988. (For the advanced reader, suggested library loan). ISBN 0898597781 ASSESSING ATTACHMENT, SEPARATION AND LOSS, Linda Bayless - Child Welfare Institute, 1365 Peachtree Street, Suite 700, Atlanta, GA 30309. Great for explaining attachment to teachers! THERAPLAY, Ann Jernberg, Jossey-Bass Publishers. Discusses a "playful" approach to attachment problems. Available from The Theraplay Institute in Chicago, 708 256-7334. HIGH RISK, CHILDREN WITHOUT A CONSCIENCE, Ken Maoid & Carole McKelvey. Regarding attachment. Available through Tapestry Books (800 765-2367). |
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