Survey of Children Adopted From Eastern Europe - The Need for Special School Services
For over fourteen years, children adopted from orphanages have been arriving in steadily increasing numbers. As their numbers increase, so do their needs for special educational services. At this point, we have a good number of histories from the students who are currently enrolled in school and we can see the trends. How likely is it that the child you have adopted or are going to adopt will need considerable help getting an appropriate education? Are adoption agencies and social workers adequately preparing their families for what may lie ahead during school years, and are they supporting their families with post-adoption information and continuing education? Do school systems understand the cognitive and emotional dynamics of children who have previously lived in orphanages? Our EEAC survey confirms what the experts have been saying for many years. These children are at high risk for difficulties in school. Our lack of support or understanding makes it likely that some of them may never reach their full potential. These formerly disadvantaged children deserve all the help the adoption and education community can muster. It's well past the time to make our collective message clear enough to every person involved with post-institutionalized children to understand. It’s up to us to see that their educational needs are recognized early and that they receive the support services they need. A lot of internationally adopted children carry emotional scars from their early life experiences. Before now, we haven't had the data to determine how those institutional scars might affect school performance. Our study confirms what the many experts have been projecting about the challenges these children and their parents might face – that many post-institutionalized children will need special education services to get through school successfully (Adoptive Families Magazine on-line). There is no question that the need to prepare parents and educators more effectively for their experiences with internationally adopted children is critical.
About Our Support Network
When reports began coming out of Romania in the late 1980's about the grim conditions of children in orphanages, willing parents from around the world rushed to that country and began adopting children. In the early 1990's, Russia and countries from the former Soviet Republics opened their borders to adopting parents. Some of these parents sought support through electronic mailing lists and Internet websites. The A-PARENT-RUSS mailing list and its associated website were established in 1995 to help provide this support. In order to expand this support to parents adopting children from other Eastern European countries and to post-adoptive parents, the Eastern European Adoption Coalition (EEAC) was formed in 1998. EEAC was incorporated in 1999 and received 501(c)(3) tax exempt status from the IRS in 2002. EEAC currently operates 20 mailing lists and its website at http://www.eeadopt.org. Over the years that children from orphanages have been joining families, EEAC's mission has been to educate adoptive parents concerned about the effects of post-institutionalized life. Our approach has always been that a well-prepared adoptive parent will be a more satisfied and capable parent. The ultimate goal of all our work has been the welfare of both the children and parents who have created these new families. Because we are a very large on-line support group offering parent-to-parent and expert-to-parent information, we must work on the premise that most of our members come to our site looking for answers. Consequently, the data used in this report must be considered in the context of having come from a unique source which may or may not accurately reflect the entire population of parents who have adopted from orphanages. On the other hand, those thousands of us who have been communicating on-line over the past ten years have had the advantage of watching large numbers of post-institutionalized children move through elementary, middle and high school. Our observational experience has made us knowledgeable participants in a very large anecdotal study. Many post-institutionalized students have had great difficulty within an educational environment. It has been well documented over the years by many adoption experts that all children adopted from institutions are at high risk for developmental and emotional issues (Johnson, Aronson, Gunnar, Federici, Ames). This report is not meant to draw any conclusions about the total percentages of internationally adopted children who will be high risk, special needs, or will need exceptional children's services in school. It is reasonable, however, to conclude that the data in this report will be relevant to parents who adopt developmentally delayed, language impaired, or emotionally fragile children from orphanages.
How the Study was Conducted
The data for this survey was collected in the form of an on-line questionnaire. Approximately 1,400 EEAC members from two of our post-adoption lists were sent invitations to join our study. We received responses representing 435 individual children, 293 of whom are currently school age. The children who are already attending school are the focus of this report. Age distribution was 5 years to 19 years. Grade distribution was Kindergarten to 12th grade. Each child was assigned an individual number. Families with multiple children received a separate number for each child. Questionnaires were accessed by clicking on a web link. Participants had the capability of sending the survey back to us via e-mail. Information could be reported only by parents. There were 107 possible questions. Our survey was launched January 11, 2005. Most responses were received within two weeks of the launch date. An option to participate in follow-up studies was included at the end of the questionnaire. Ninety percent of participants volunteered to be part of any follow-up study.
About the Children
Most children enrolled in this study attend public school and reside in the United States. Eight children were reported to be home schooled. Almost all are currently living at home in two-parent families. Family demographic information reported in this survey closely matched that of the University Of Minnesota’s First Findings from the International Adoption Project, 2002.
Chart 1: Survey participants, by age at adoption, years in adoptive home, and current age
Focus on Needed Educational Services
The specific focus of this report is on emotional and developmental issues as they relate to a post-institutionalized child's need for educational support services. While many of these children may glide smoothly through their school years without needing additional support, it's clear from our data that a great many of them are going to need assistance. Even if these children do well enough to get through school without support services, it is unknown how many of them will be academically competent enough to go onto higher education. When post-institutionalized children enter a classroom, teachers see them as members of culturally enriched families, whose parents are well-educated, predominantly middle-class, Caucasians. This is not the usual presentation of students needing special education services. Most of the time, teachers do not anticipate problems, and many students slip through the cracks of our educational system for too long during their early elementary years. Frustrated parents who recognize their children’s challenges may have to fight for school resources and support. This creates tremendous stress for everyone in the family (Barth, Gibbs, Siebenaler; Health and Human Services).
Developmental Delays, Language, and Learning Disabilities
Dr. Dana Johnson from the University of Minnesota who is engaged in the largest longitudinal study of post-institutional children in the United States advises that all orphanage children will have developmental delays and are therefore at high risk. OrphansAdoption.com reports: "Although it is not necessary that a child have medical or developmental disabilities to be eligible for international adoption from Russia, adopting parents should consider all children adopted internationally to be special needs. Adopting parents should expect developmental delays”. Tragically, there is an almost universal lack of understanding among adopting parents about what developmental delays really are, how profound they can be for the entire family, and how often they occur with other neurological impairment.
The term "developmental delay" is misleadingly innocuous, but daunting in its actual implications. It indicates delayed physical, emotional, and cognitive development - not simply a very small child who is immature and underweight. The physicians who evaluate video and medical referrals and/or examine a great many children coming from orphanages estimate that one month of cognitive and physical growth is lost for every three months spent in an orphanage (Aronson; Albers, 1997, Johnson, 2000). These delays are caused by missed critical milestones in development - foundational "holes", so to speak. Because these deficits are foundational, and since all higher learning is supported by a child’s developmental foundation, it is impossible to ignore missed milestones hoping they won't be critical later on. Missing information needs to be identified, appropriate therapies need to be implemented, and consistent support needs to be given to both the child and the parent. A developing child’s progress is directly proportional to 1) health, nutrition and prenatal care of birth mother, 2) length of term and birth weight, 3) availability of dependable primary caretaker and nurture, and 4) level of physical stimulation, emotional interaction, and language exposure during the first critical and formative years of life. For orphanage children, age at placement, and duration of time spent in an institution are also critical factors. If all the environmental variables are positive, and if a child spends a minimum amount of time in an orphanage environment and has strong survival skills, that child will have a decent chance of closing any developmental gaps. Regrettably, that seldom happens. The percentage of children in our study who were adopted before their first birthday was only 13 percent. Birth weights of orphaned children are frequently low due to prematurity, maternal illness, drug addiction or alcohol abuse, malnutrition or smoking. Primary caretakers don't exist in orphanages. Appropriate levels of sensory stimulation are missing. Language delays and language processing problems affect large numbers of children in institutions (Groza, Ileana, Irwin). Many children live inside an orphanage for years before they are adopted. If developmental delays are present at the time of the adoption, and if early intervention isn't implemented immediately, precious time will be lost that may never be recovered.
Every day at school is another large serving of instruction. Normally developing children can keep pace with the new material pouring in because they draw upon their early learning, vocabulary, and culture. Post-institutionalized children who come with delays have a terrible time assimilating this rapid flow (Glennen, 2002). They have incomplete early learning, weak language skills, and lack of cultural exposure. These children don’t possess fundamental tools for academic success. During the early school years, their symptoms may include fine and gross motor problems, trouble with learning their alphabet, inability to grasp basic math facts, or difficulty remembering or retelling a simple story. They may have general memory problems or appear inattentive, hyperactive, sensory seeking or sensory defensive. They may start to exhibit a lack of phonemic awareness or have problems with sound/symbol associations. These are all clues that intervention is required immediately. This is the time for parents to start advocating for their children and asking for special services in the form of IEP’s (Individualized Education Plans).
Some children may be functioning well enough that an hour in the Resource Room will suffice (this is called an Inclusion Plan). Some will need more help and may be placed in a special self-contained classroom for learning or emotionally disabled children. Still others may need a full-time aide and/or assistive technology to help them through the school day. Many children will need tutoring in addition to special services while in school (Barth, Gibbs, Siebenaler, Health and Human Services). Language delays have the greatest detrimental impact on future learning potential because learning requires reading and “reading relies on the brain circuits already in place for language” (Shaywitz, 2003). Too often language delayed children who are struggling children are placed in ESL (English as a Second Language) programs as the solution. These work for immigrant children who have a strong first language base which is probably still being spoken in their homes. These immigrants learn English in addition to their first language. In contrast, post-institutionalized children with developmental and language delays who have come here suffering the effects of early deprivation are frequently missing the fundamentals of a primary language (Glennen, 2002). They are not learning English as a second language. They are learning English as a second, first language (Guitierrez-Clennan, 1999; Schiff & Meyers, 1992). Once they exit ESL programs, they are placed in remedial whole language reading programs which don’t work because they rely on contextual clues and strong knowledge of vocabulary. Far too often, there is no school recognition or acknowledgement of the profound difficulties the child may be having until the end of third grade. By then, that child has already lost at least four irrecoverable years of potential remediation and special educational support. Adoptive Families Magazine reported in 2002: "There’s practically no data about the wave of children adopted internationally since the mid-1990s, who, for the most part, are just entering school. There’s little argument, however, that many children from overseas orphanages arrive with poor language skills, which can be the basis for later learning disabilities. Some researchers suggested that the children in the orphanage displayed clear deficits in social and cognitive functioning compared to same age children attending kindergarten. On the basis of these differences, researchers predicted that these children would have learning difficulties in the future. ” (Groza, Ileana, Irwin)
Alcohol-Related Neurological Disorder
There is another important issue to bear in mind when considering causes for learning disabilities over and above inherited traits or the effects of early deprivation, and that is Alcohol-related Neurological Disabilities (ARND). ARND as a diagnosis is difficult to nail down without documented maternal history or alcohol abuse. In the case of children who are placed in orphanages after living with their birth mothers for a period of time, histories of prenatal care are almost non-existent. However, in our study, 53 parents answered that their children had been diagnosed with ARND, and another 56 said they suspected ARNDs.
Dr. Boris Gindis suggests that there is an additional negative component to language delays in Post-Institutionalized children. He has labeled it "cumulative cognitive deficit". As Gindis describes it, "Cumulative cognitive deficit refers to a downward trend in the measured intelligence or scholastic achievement of culturally/socially disadvantaged children relative to age appropriate societal norms and expectations." He also said, "Constant failure in cognitive activities feeds upon itself in a negative spiraling fashion which results in low self-esteem, lack of interest in and constant frustration with cognitive efforts." The reality of orphanage life is that nurturing takes a back seat to chores. Orphanages are institutions run by well-intentioned but low-paid caretakers who are responsible for large numbers of children. Babies learn very quickly that if they cry, no one will come (Groza, Ileana, Irwin). Older children lack the opportunity to talk to adults. The end result is an eerie silence inside these institutions. It’s a symptom of dramatic and damaging changes that have occurred inside the brains of traumatized and neglected children - changes that lead to disruptions in normal sensory processing (Perry). Lack of exposure to meaningful language, lack of nurture and individual attention compounded with the stress of being totally powerless over their surroundings causes neurological changes which may have negative effects on a child's life in his new adoptive family and at school. Language professionals who work with post-institutionalized children have recommended that older adoptees who are expected to have language skills be tested in their primary language as soon as they arrive. Dr. Sharon Glennen, in her article Language and the Older Adopted Child, explains why it is necessary to test older children before the loss of whatever skills they have in a first language. The sooner a problem is identified the better it will be for the child. Clear articulation does not guarantee successful language development and, in fact, may mask a significant problem. The appropriate therapy if a child is language delayed takes place with a Speech/Language Pathologist. America’s state run Early Intervention Programs may help if a child is young enough to qualify, but it's likely that complete success may need the assistance of a private Speech/language professional. Parents should bear in mind that this kind of language therapy will be of significant duration and expense. However, left without sufficient therapy, language skills will never keep pace with academic expectations. Because the language center of the brain is in such close proximity to the reading center, unaddressed language problems may lead to learning disabilities, particularly dyslexia (Wood, Flowers, WFUMC, Department of Neuropsychology). Many post-institutionalized children who have learning disabilities will need the intensity of one-on-one instruction which may require tutoring either in school or with a private tutor. In our study, 34.8 percent were receiving speech tutoring, 33.1 percent were receiving tutoring in reading, 25.9 percent were receiving Occupational Therapy tutoring, 22.9 percent were receiving math tutoring, and 19.5 percent were receiving tutoring in Social Skills.
The Effects of Prolonged Stress
"We have to understand the cumulative cognitive deficit in IAPI (internationally adopted post-institutionalized) children may occur concurrently with or as one of the consequences of Post-Traumatic Stress Disorder and Attachment Disorder" (Gindis), the most frequently found psychiatric diagnoses in our own study.
Post Traumatic Stress
Post traumatic stress within this community of parents has also been described as "adoption stress", a term which can be applied to all parties in an adoption. "The reality is, when we look closely at adoption, we realize that traumatic stress is pervasive - often impacting several, if not all, of the parties involved. Unfortunately, this traumatic stress, ‘adoption stress’, is generally not recognized and its impact is misunderstood." (http://www.adoptiondoctors.com). Misunderstanding of the effects of post-traumatic stress is perhaps deepest at the school level. Children's responses to stressful situations differ from that of adults. What may appear to be hyperactivity, inattention, oppositional behaviors, cognitive difficulties, memory issues, or hyper vigilance could, in fact, be the symptoms of adoption stress and/or PTSD (Post Traumatic Stress Disorder). Chronically stressful situations may lead to deficits in learning (http://www.futureofchildren.org). PTSD is unique in that it is an initial emotional response that can, if stress is sustained for a long enough period, cause temporary or permanent neurological damage to the sufferer (Perry). So, PTSD is the bridge between the emotional and neurological issues of the typical post-institutionalized child. When one considers the large number of neurological and emotional problems reported in our study, it becomes clear that it is impossible to ignore the consequences of this key piece. There is much excellent material available that can help parents and teachers better understand the underlying causes of stress and ensuing neurological changes stemming from life in an institution. Adopting or teaching a child who has experienced such stress and not realizing how much of an impact it will have does a huge disservice to all concerned. Dr. Bruce Perry at http://www.ChildTraumaAcademy.com and Dr. Boris Gindis at http://www.BGCenter.com have on-line training programs available for parents and teachers. It's my opinion that both of these on-line courses should become requirements for all adopting parents.
Institutionally Caused AD/HD Symptoms
In 2003, Dr. Jerri Jenista writes “Adopted children’s problems seemed to be related mostly to language difficulty and attention deficit and hyperactivity.” An extremely thorough and in-depth study by Kreppner, O'Connor, Rutter, and the English and Romanian Adoptees Study Team has identified a strong correlation between inattention/overactivity and former life in an orphanage. Current research by this same group is addressing the question of "whether the inattentiveness and overactivity observed in the present sample is different in type from that which is normally defined as AD/HD in clinical practice." It would seem from our support group’s observation that the underlying cause of what appears to be AD/HD in these children may actually be specific neurological damage which manifests itself as inattention and overactivity but is unique in composition to each child. If that is proven to be true, it would partially explain why many of these children react so adversely to traditional pharmaceutical, behavioral, and therapeutic approaches to AD/HD. We may be seeing inattention and hyperactivity when, in fact, these behaviors are the results of the sustained stress of life in an institution. It's clear from our reported data that this AD/HD-like presentation exists in a very large number of those we surveyed. Respondents reported that 32.8 percent of the children were diagnosed with AD/HD.
Where Do We Go From Here?
The current thinking among many adoption professionals and adopting parents is that we should prepare for the worst and hope for the best when we adopt post-institutionalized children. A far more realistic approach might be to expect and thoroughly prepare for the worst so that we are ready for the realities of parenting these children, many of whom will need therapy and special services throughout their school years. The "best" may be nothing like you expected. Realistic expectations correlate with overall satisfaction. The good news is a great many children seem to be having no problems at all. I can honestly say, based on my own experience with three educationally challenged, language-delayed, and neurologically compromised children who are now in middle school and high school, even if your reality isn’t what you would have wished, you can get help, you can see your children achieve success, and you most definitely can have a thoroughly rewarding and fulfilling family life in the process. In reviewing the questions posed in the introduction of this article: How likely is it that the child you have adopted or are going to adopt will need considerable help getting an appropriate education? Enough post-institutional children and their families are struggling with academics to necessitate the preparation and planning it takes to be an effective therapeutic parent and an educational advocate for your child. Evaluations for developmental delays, sensory and processing disorders, language delays and disabilities are just as important as general pediatric appointments, re-immunizations, and dental interventions. Parents bringing children home who are young enough to qualify for Early Intervention should be applying to this program whether or not they believe their child has an immediate need. Agencies should insist this be a requirement, right along with the post-placement reports and visits from social workers. Are adoption agencies and social workers adequately preparing their families for what may lie ahead during school years? At the present time, good pre-adoption education is falling far short of need. It’s not that agencies aren’t trying to cover all relevant pre and post-adoption topics, but they need to re-evaluate the programs to insure that truly relevant issues are being presented. Post-adoption preparation and support is sorely lacking. In light of the fact that this year alone, three children have died tragically in families overwhelmed with post-adoption stress, the creation of dependable, comprehensive, and accessible support departments should be the number one priority for every single agency placing children from orphanages. Continuing education programs need to be developed and encouraged. Do school systems understand the cognitive and emotional dynamics of children who have previously been living in institutions? Every person who becomes involved with a post-institutionalized child needs to be cognizant of the significant possibility that child will need assistive services in school. A thorough understanding of the psychological and emotional changes that happen to institutionalized children is necessary to do that. Parents need to learn their rights and how to effectively advocate for their child's appropriate education. Teachers and school administrations must become more aware of the complexity of teaching these children. The only way any of this will ever be accomplished is by parents pushing for change. Ultimately, it's our responsibility as guardians of these children's lives to assure their needs are understood and met.
The author acknowledges and thanks Clark Pickett for his assistance in the preparation of this report. Clark analyzed the data and prepared the tables and chart. He is one of the founders of EEAC. He currently serves as the Treasurer of EEAC, Inc., and is the primary Listserv administrator of its mailing lists. He lives in Baltimore, MD with his wife and adopted Russian son and daughter.
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Perry, Bruce. Surviving Childhood: An Introduction to the Impact of Trauma. www.childtraumaacademy.com on-line course.
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Harriet McCarthy is a free-lance writer whose primary interest is the challenging issues of post-institutionalized children. Over the past ten years she has been involved with support groups for parents of Eastern European adopted children and children with learning differences. She has managed the Eastern European Adoption Coalition's PEP-List (Parent Education and Preparedness) since its inception in 1998 and is a current EEAC Board Member. In 2003, she received the Congressional Angels in Adoption award. She is a graduate of Salem College and lives in Winston-Salem, NC with her husband and three adopted Russian sons. For more information visit her site Post Adoption Information at http://www.postadoptinfo.org/