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NEWSLETTER - Vol. I, No. I 3213 Midfield Road, Baltimore, Maryland 21208 Stanley I. Greenspan, MD, Chair *** Leon Cytryn, MD, Biomedical Editor *** SPECIAL FEATURE: Stanley I. Greenspan, MD: Clinical Insights The Newsletter of the Interdisciplinary Council on Developmental and Learning Disorders is written to provide regional updates and networking opportunities to professionals and parents working with young children with communication and relating challenges. We hope to provide information and support and welcome any feedback or contributions that you may have. Please address your comments to Jo Raphael, MSW, LCSW-C, Administrative Editor at: 3213 Midfield Road Baltimore, MD 21208, E-mail at JO@ICDL.COM, phone or fax at (410) 486-1251. Thank you. REGIONAL NETWORKS Lori Jeanne Peloquin, Ph. D. This column focuses on the various regional ICDL networks within and outside the US, their structures and activities. A different region will be highlighted with each Newsletter. Illinois Interdisciplinary Council on Developmental and Learning Disorders In 1997, during the Infant and Early Childhood training course, a core group of parents and professionals from Illinois met and decided that they wanted to keep meeting in the Chicago area. The group, informally known as the "Circle Network", met several times and then adjourned meetings for a few months in order to define their mission. There was a general invitation for parents and professionals to take part in a planning group. That group met, calling itself the steering committee, and over four or five sessions formalized the group’s purpose and agenda. The Illinois ICDL is an organization of parents and professionals committed to the following objectives: 1) to promote awareness and understanding of the social and emotional underpinning of development and its relationship to intellectual functioning 2) to educate ourselves and others, including those in the medical and educational communities, about developmental and learning disorders, 3) to provide a forum for both parents and professionals to explore practical applications of relationship-based intervention, and 4) to facilitate the development of family support. To achieve these objectives, and build a network between families and a wide spectrum of professionals, they bring together the membership and speakers who further the understanding of the practical applications of relationship-based intervention strategies. They also provide parent to parent support, and professional consultation among members and others. Past presentations have included "Floor-Time Techniques in the Primary Grade Classroom" and "The Role of Affect". Topics for this year include "Writing the IEP with the Relationship-based Model in Mind" and "Inclusionary Practices". The regularly scheduled meetings occur approximately every six weeks at alternating free sites (churches, community centers) around Chicago. A non-profit social service agency donates the mailing costs. They host a speaker at each meeting. The IICDL recently co-sponsored (with Developmental Delay Resources) a conference held June 10-12 at the Oak Brook Marriot titled "After the Diagnosis-Then What?" The program included Carol Kranowitz (author of The Out of Sync Child), Kelly Dorfman, William Shaw, & Molly Romer-Witten (ICDL Regional Facilitator) as speakers. For additional information on the conference, call 301-652-2263. The IICDLD has developed a web page: http://ezad.com/iicdld and can be reached via e-mail at IICDLD@ezad.com
CHILEAN INTERDICIPLINARY COUNCIL ON DEVELOPMENTAL AND LEARNING DISORDERS Paula Philippi, Psychologist Until the beginning of 1998, children with developmental disorders in Chile were receiving traditional services of speech and occupational therapy twice a week. Some of the professionals had intuitive experience in play techniques and some of them in behavioral approaches. These well intended and experienced professionals were working mostly isolated in their private practice, lacking of a "common language" that could help coordinate efforts to increase and strengthen rehabilitation outcomes. In 1998, Dr. Cecilia Breinbauer, child psychiatrist, ICDL member and regional facilitator, offered a series of basic training courses as a regional activity of the ICDL. At this time we are a group of about 100 professionals (psychologists, speech therapists, occupational therapists, special educators, kinesiologists, among others) that have taken the Floor Time basic training course. This course has been given six times. It is designed to promote discussion and network opportunities among the participants. It has been offered to experienced professionals currently treating children with developmental disorders. The course consists of 20 instruction hours divided in 10 weekly sessions of 2 hours each. Each time there are between 16 to 20 participants of different professional backgrounds. The general objectives of the course are:
The methodology used is a combination of theoretical and practical material. The professionals are able to bring their cases in videos to apply the contents of the course, learn how to do a developmental profile and receive further indications in what to do if they felt troubled in applying the Floor Time techniques. These courses have created a "common language" between the multidisciplinary team involved around children in treatment. It has also enabled us to create a local multidisciplinary directory. Another exciting outcome of these courses is that several of the professionals that have taken them are now passing this knowledge on to the universities, in pre-graduate lectures and courses in their own professional field. Once the course was over, we began to have clinician meetings in small groups of, at the most, seven members. Many of us are being supervised by Dr. Cecelia Breinbauer in order to learn more in depth Floor Time techniques. We have recognized the need of working with the parents-not only in future training courses of the Floor time techniques-but in the psychological process so that they might continue to live while implementing this technique. We have found some common reactions from parents that at times prevents the positive flow of the play with their children. Currently we are preparing the South American Conference of Developmental, Individual Difference, Relationship Based Model (DIRŪ), that we plan to have in Santiago de Chile by the end of 1999. We look forward to seeing you here! The Chilean ICDL chapter can be reached via e-mail at: ICDLCHILE@hotmail.com. STARTING A REGIONAL GROUP Jane Downey and Sally Savelle
If you are a small group of just parents, you can notify members by phone and won’t need to worry too much about mailings. If you are a blend of parents and professionals and plan structured presentations you might need a larger venue. All of these things you will be shaping and deciding as you talk to one another and reach a consensus of what you want. Expect that your group might ebb and flow in terms of size, and that your group purpose might evolve over time. One item that we may suggest is to define your orientation very early in the forming of your group. You can easily present many ideas that might be helpful to children with special needs, but if your group wants to focus primarily on Greenspan’s developmental model you will want to clarify that initially. After your group purpose has been established, you might want to gather literature/materials related to your purpose (e. g. floor time), to distribute to current and new members. These materials might include helpful books or articles to read, as well as handouts on floortime techniques and helpful websites to visit. Please see the ICDL Newsletter for information and announcements on Regional Networks. EDUCATION Barbara Kalmanson, Ph. D. I have been given the exciting and complex task of gathering information and reporting on educational innovations throughout the country. I’ll take the opportunity in this first edition to describe an innovative project here in San Francisco that has been evolving for about 20 years. Before anyone coined the term full inclusion, Leslie Roffman, an energetic preschool director had the foresight to see the merits of including children with special needs in her school. We have worked together since 1980 when the school was a rented room in a community building and had one class of about 12 children. At present the preschool, called The Little School, has programs for 2 – 6 year olds, its own architect designed building, 7 classes for more than 100 children, and 21 children with special developmental needs among them. It is the most well endowed preschool in the city, and the most sought after school for young children. The director’s educational philosophy of a child-centered, individual differences model of teaching and learning was well suited to integrating a diverse group of learners. Her emphasis on social and emotional development, and on play as the primary work of the preschooler, perfectly matched the relationship based approach to intervention. After years of developing the program, educating the community and creating a joint public-private cooperative effort, the Stulsaft Foundation granted the school sufficient funds to create a demonstration full inclusion project. This year, each class had from 3 – 5 children with special developmental needs. Their needs range from language delays and regulatory issues, to cerebral palsy, to autism. Each classroom has at least one extra teacher but in most cases, not a shadow teacher. We rethought the use of a shadow teacher and decided that most children need a primary attachment figure in the classroom but full inclusion children became isolated from their peers when an adult was identified as belonging to a particular child. Peers tended to talk with the shadow instead of the child, and to interact with the adult rather than with the child. If there are enough teachers in the classroom so that the children with special needs always have an available adult, and everyone has special adult relationships, the full inclusion children’s interactions are facilitated more intensively, but are just like everyone else’s. Frequently, it is the lead teacher who becomes identified as the full inclusion child’s special attachment figure, which serves to keep the child at the center of classroom activity. All of the teachers participate in the full inclusion program, which includes site observations of children and teachers, reflective supervision or mentoring for teachers, periodic topical workshops and discussions of the children’s progress. The teachers also attend regular classroom staff and whole staff meetings. Although The Little School is a private preschool, we have pioneered a public/private cooperative venture in serving the students who are eligible for public special education services. Years ago, when I began going to IEP meetings for preschool age children, parents were offered two choices. They could send their child to a special education day class in order to receive services or forego public services and send their child to a private preschool and arrange for their own support and special services. The director of the assessment unit for the district and I felt that this was an unnecessary and unhelpful dichotomy of choices. Many preschoolers would be best served in the private preschool of their family’s choice, with opportunities to play and interact with children with effective communication and relationship skills. In the public sector in California, the only preschool settings beyond special education are day care centers designed to serve low-income single parent families. Many of the children in these centers are stressed and have special needs yet to be identified. They are not always the optimal developmental models. This situation led us to invent an alternative plan. The school district developed a preschool consultation team consisting of an early childhood special educator, a speech and language therapist and an occupational therapist. I contributed by providing on call consultation to the team. This team was set up to visit children in private preschools, offer an ongoing assessment, classroom teacher consultation and even some on-site intervention as needed. The team members participated in developing and implementing IEP’s and in helping families identify and secure school district placements for children moving on to Kindergarten or first grade. Parents paid the preschool tuition they were already prepared for and the school district provided the special services. If consultation services were not intensive enough to meet a child’s needs, the child was reconsidered for a special day class rather than receive consultation team services and specialist’s individual services. Parents are full participants in this project. At The Little School, they are invited to observe or volunteer in the classroom, attend any of the team consultation meetings, request meetings at any time. Although The Little School has many children served by the consultation team, the team is now providing services to preschoolers in at least a dozen preschools. As the special education and psychological consultant to the Children with Special Needs Project, I observe teachers and students in the classroom and provide supervision for the teaching staff and consultation with parents and teachers. I have been helping the school develop a new teacher specialist position by mentoring a teacher who will be the on-site staff member, who observes, consults with classroom teachers, coordinates services, develops goals and objectives, and provides the link to parents. The teachers involved in the project are interested in dissemination of their approach. Teachers from many other preschools in the area have visited the program to observe and learn about how to serve children with special needs in their setting. Some teachers from The Little School have offered in-service training for other schools as well as presenting the model at conferences. They are hoping to develop a demonstration video for teaching purposes as well. Some of the questions we’re grappling with at the moment involve: how to help peers encourage children with special needs to sustain interactions; how much adult facilitation to provide and when to back out; and how to find the right balance of repetition and novelty to optimally serve all the children in a classroom. If you are involved in an innovative educational project and would like to let us know about it, please contact me at this newsletter. THE PARENT STEERING COMMITTEE Deborah Flaschen The Parent Steering Committee for the Interdisciplinary Council on Developmental and Learning Disorders (ICDL) was organized in August 1998 following discussions by several parents from different parts of the country at the 1998 Spring training meeting. Our initial focus was to prepare for the November ICDL conference. We produced A Resource Guide: For Parents By Parents, to aid parents as they search for assistance for their children. A Resource Guide presents bibliographic and summary information about various forms of educational, medical, nutritional, therapeutic and other interventions. The guide was distributed to all attendees at the November ICDL conference. A Resource Guide can be ordered by contacting ICDL at (301) 656-2667 or www.icdl.com. The Parent Steering Committee also prepared and presented a panel discussion entitled "A View from the Floor". Each panel speaker was a parent of a child with developmental and/or learning disorders, and each had been involved in intensive, multidisciplinary intervention programs, including the developmental and floor time approach. The speakers addressed the following family experiences: Life on the Floor (or Going in Circles) Observations After Eight Years of Practicing Floor Time, presented by Jill Greenberg Kail; One Family’s Experience Using Behavioral and Floor Time Models, presented by Mark Rosenbloom; Encountering the Educational System, presented by Joan H. Levin; A Word From the Kitchen; Deciding to Try and Living With Nutritional Approaches, presented by Deborah Flaschen; A Father’s Perspective, presented by Robert Naseef; The Newly Diagnosed Family-Surviving and Accepting the News presented by Jane Downey; Taking Care of Yourself-Why and How to Do It, presented by Vicki Thompson. The panel was moderated by Amy Berman Jackson. Since the November conference, the Parent Steering Committee has begun identifying priorities. Supporting the formation and growth of regional support networks is one of our highest priorities. As a first step in working toward that goal, we wish to share the experiences of two regional networks: the Illinois Interdisciplinary Council on Developmental and Learning Disorders and the Greater Boston-area ‘Greenspan Group’. COMMENTARY TREATING THE WHOLE CHILD Beth Kephart
Beth Kephart, Author A Slant of Sun: One Child’s Courage (W.W. Norton, June 1998) In the fall of 1991, our two-and-a-half year old son, struggling with atypical speech, impaired social interactions, a range of obsessive behaviors, and gross and fine motor delays, was diagnosed with pervasive developmental disorder not otherwise specified. It was almost Christmas, and the world seemed very dark. We left the hospital with our gorgeous son in our arms, an unwieldy label on our minds, and two spare pieces of advice to give our son food when he used language correctly, and to break him out of his obsessions whenever he got caught for more than twenty minutes at a time. It was hard enough making sense of the label. What was even harder was making use of the doctor’s advice. Food certainly wasn’t going to be the key to helping Jeremy overcome his profound echolalia (his habit of repeating the words said to him, as opposed to initiating any conversation on his own). And tearing Jeremy away from his beloved obsession which involved lining up matchbox cars at that time only produced anger, frustration, a total shutdown. We didn’t get anywhere, during those first several weeks after the diagnosis, and the therapists we took Jeremy to also expressed their own frustrations. We had to find and take a new approach, and very slowly we fumbled toward it. What do you do when you want, more than anything in the world, to have your only child look you in the eye and express an innate thought or a desire? When you believe fervently that a brave, funny, loving, imaginative, intelligent little boy exists beyond the veil of a neurological disorder? Over time, my husband and I learned to take our cues from Jeremy to stop trying to "instruct" him in the things adults tend to presume are important, but to slip, instead, inside his world, so as to understand the mesmerizing magic of his toys, the confusion he was experiencing with language, his general social anxieties. We began to view his fierce desire to arrange his matchbox cars in frozen spirals or rigorous patterns not as an obsession to be broken, but as a passion to be understood and leveraged. We got on the floor, we lay down beside him, and we divined by watching carefully the logic of his patterns. Almost imperceptibly, we began to enter his play, to add a red car to the red arm of the red-white-red-white spiral, or to remove the brown car from the blue line. Once Jeremy could see that we weren’t planning to destroy his well-wrought patterns, he trusted us to help give him language a long, drawn-out process in which storytelling was our primary tool. In our family, we’ve come to think of story as a means of extension as a way of incrementally augmenting our understanding of one another and ourselves. At first, our family "stories" were predominated by nouns. Labeling objects was a skill Jeremy had had as a one-year old, and though this skill had been eroded considerably by the encroachment of the echolalia, we helped Jeremy remember his nouns, focusing exclusively on the things he clearly loved: Thunderbird. Camaro. BMW. Bulldozer. Over time, perhaps five months, Jeremy began to take possession of a fine vehicle-rich vocabulary. The profound echolalia, despite one expert’s warning that it would never dissipate, utterly and irrevocably vanished. If a child is good at labeling things and identifying objects and if, indeed, he takes great pleasure from such activity, then it isn’t such a stretch to help him put actions and emotions between the nouns. Where are the cars going? I would ask. Who is driving those cars? How do those drivers feel? How would you feel, if you were driving? These were truncated conversations, one sentence hypotheticals for sure, but just as surely, Jeremy’s vocabulary and his eye contact would increase as he slowly yielded to my questions. His interest in what I had to say was expanding, as he increasingly looked to me to give my own answers to some of the questions I was asking, and as he trusted me not to swoop his passion aside in the name of some so-called "healthier" pursuit. I exploited the opportunities, made up stories on the spot, and waited, to give Jeremy his own turn at story telling. I do not mean to suggest that the stories we told in our house pertained exclusively to Jeremy’s passions. We spent time with traditional story books as well bridging Jeremy toward fantasy and every day tales by finding picture books that would place his passion within a much broader context. "Go Dog Go" was perfect for a while, for it gave Jeremy the reward of finding a whole darned traffic jam at the story’s denouement. When Jeremy’s passions turned to castles and medieval history, King Arthur stories provided the accoutrements of knighthood. When the time was right, I supplemented our textbooks and our passion-based stories with stories that stood entirely on their own. "The Marvelous Journey Through the Night" a beautifully illustrated Helme Heine book got Jeremy and me talking, one incredible afternoon, about dreams, about what goes on inside our heads when no one is looking. "The Pig’s Wedding," another Helme Heine masterpiece, got us talking about love and friendship. "We Help Daddy" got us thinking about how chores get done around the house. Music got us thinking too: "Phantom of the Opera." "Les Miserables." "West Side Story." We played the tapes in the car, and we tried to imagine what the tones and melodies and moods of the music could mean how were we supposed to feel when we heard it? How is the singer feeling when she sings this song or that? As each tune would come on, I’d give Jeremy a preface, tell him what was happening in the story, ask him to pay attention to emotive sounds. We played contemporary music, too, talked about the songwriters and the songs, made fun of lyrics that appeared to make no sense. Of course, you don’t have to read books or listen to music to tell stories. We turned our days into stories. I made long lists of the things we were to do each day and tacked them up on the refrigerator-another scaffold of sorts. We woke up, we had breakfast, and we sketched out the narrative arc of the day we were about to live, scheduling in arts and crafts and walks and chores and playgrounds and stories, and of course, free play. Knowing what the day was going to contain helped ease Jeremy’s many anxieties, helped keep me on course, and helped remind us that our lives were stories, too, that the decisions we make and the places we go all have a narrative thrust. We were living a story all our own, and when we looked out the window of our house or out the window of our car, we made a point of conjecturing about the stories of the people who passed us by. Very deliberately, I would encourage Jeremy to first wonder about, then put forth a few suggestions relating to the comings and goings of passersby. Where do you think that man is going in such a hurry? Why is she carrying an umbrella? Why does that lady look so tired? Why is that little girl dragging her feet? Why is that mother yelling? We spent time conjecturing, making up stories up total strangers, trying to get inside their heads by reading the few clues available to us. Finally, we spent time reflecting, in a very concrete way, on whatever experiences we had encountered, what we had lately learned. Late at night, when Jeremy was asleep, I’d write about the big green hat he loved or his obsession with the red baron or a trip we’d taken on a train or the tornado that had blown through town. I’d write pieces of Jeremy’s life down for him, and read them to him when I was done. As much as I could, I wanted him to know how he was growing, what he was accomplishing, what he meant to me. I wanted him to see himself in his own broader context, and I think writing small triumphs or passions down for him was a way to support this objective. By the time Jeremy was five years old, he had a faltering, shy, still-noun predominant vocabulary enough of a vocabulary, however, to ensure his placement in a small mainstream kindergarten. Though he wasn’t a conversationalist, he was able to tell his teachers and ourselves what he wanted, what he was afraid of, what he needed. With every day, he grew increasingly confident willing to expand his vocabulary just that much further, demonstrating greater empathy for others, taking those essential beginning steps toward friendships with children his own age. Concurrently, Jeremy began to find ways to tell us stories of his own. He began, for example, to draw mazes-fascinating roadways punctuated by fields, houses, and shopping centers. It became an after-dinner ritual in our house for a while Jeremy would sit down and draw my husband a maze, and my husband would then sit down and follow the instructions Jeremy would mete out. They would build, between them, a community, and within that community they’d bring the action to life with pencils, nouns, and verbs. By the time that Jeremy turned six he was experimenting with more advanced sorts of interactive stories. "Once upon a time there was a boy named BLANK, " he would scrawl out on a page. "He lived on a BLANK. He liked to eat BLANK." Mostly my husband was given the honor of filling in the blanks, and then my husband would turn around and make up his own BLANKED story for Jeremy. Whoever had written the skeletal story was given the job, then, of illustrating the final product. "What color hair should this guy have?" my husband would ask Jeremy. "Is this man supposed to be old or young?" Jeremy would ask my husband. It was character building of a most elemental and also essential sort. It would be dishonest for me to create the impression that we had a clear-cut approach to helping Jeremy through the challenges he faced. We were making things up as we went along, and there were setbacks and there was confusion and there was heartbreak and there were days that nothing at all got done. But there was NEVER a loss of confidence that Jeremy would come through. We looked for any little sign of progress and we hung our hats on it. We were sure that Jeremy was a complete little person, and that it was up to us to help him break through. Up to us to look around at the world we lived in with Jeremy’s eyes so that we could understand what seemed plausible, what seemed dangerous, what seemed intriguing, what seemed worthwhile doing. Up to us to help Jeremy learn to ease into language through a rich, endlessly changing web of stories and storytelling. Today Jeremy is a happy, nine year old boy in a regular mainstream classroom. He still has his passions (soccer now being the love of his life), he still speaks slowly, he will never be the garrulous life of a party. But he is funny, tells jokes, asks us questions about our own lives, sits down every day, and one way or another, tells us a story. Able, at last, to hold down his end of a conversation, his relationships at school and camp are on the constant rise. His courage to attempt new things is soaring. His interest at the dinner table about what his mom and dad are speaking of, is way up too. His intuition, his spirituality, his self-awareness, his questions, his humor-all of it continues to evolve and to astound us. I am a mother, and not a researcher. I’ve been around enough to know that every single child diagnosed within the autism spectrum or with a language disorder is going to be equipped with a different set of strengths and weaknesses, going to offer different access passes. I do not believe in one-size fits all interventions. But I do believe that we can get somewhere when we start our healing with the children themselves. When we take the time to understand what fascinates them, and why. When we build language into their repertoire, one word at a time. When we recognize the magical power of storytelling. Even in the utter absence of language, there is story embedded in the things that our children do, in the toys that they play with, in the things their eyes latch onto. The challenge and the privilege of parenting is discovering just what that story is. BIOMEDICAL Leon Cytryn, M.D.
HIGHLITES OF THE CONGRESS OF THE SOCIETY FOR THE STUDY OF BEHAVIORAL PHENOTYPES November 19-21, 1998, BALTIMORE, MD. The keynote of this meeting: The Behavioral Phenotype Concept-was delivered by Martin Bax and Gregory O’Brien, leading members of the above Society which was founded in 1987 and is based in the UK. The essence of this concept as proposed by Flint and Yule (1993) is that "the behavioral phenotype is a characteristic pattern of motor, cognitive, linguistic, and social abnormalities, which is consistently associated with a biological disorder. In some cases, the behavioral phenotype may constitute a psychiatric disorder; in others, behaviors which are not usually regarded as symptoms of psychiatric diagnosis may occur." In this definition no simple pathway is envisaged as a link between a behavioral phenotype and the associated gene(s), or genotype. The speakers emphasized that many other influences—developmental, biological, and environmental—operate in complex interactions with, and constantly shape those behaviors which are a biological result of the genetic syndrome in question. The exploration of such interactions is difficult, demanding sophistication in behavioral as well as genetic investigation techniques. It is useful to recognize two ways to approach the genotype-phenotype links: one starting at the gene end (genomic) and one at the phenotype/behavior end (phenomic). In the genomic approach one studies genetically identifiable conditions, and seeks to identify to what extent there are behavioral characteristics of the condition. (Editor’s Note: One attraction of the genomic approach is its capacity to identify the actual mathematical strength of the genetic influence on behavior and so in turn to indicate how much of the variance might be due to environmental factors). In the phenomic approach, one begins with observations of an identified behavioral phenotype. It works this way. A group of individuals is observed to have certain behavioral characteristics in common. The behavioral profile may be unusual, but is not as yet known to be due to any identifiable biological condition. One begins by grouping them together for certain reasons, such as occurring in one sex, or the recognition of a common predictable natural history. A good example of a disorder, which has been identified by the phenomic approach, is Rett Syndrome. This condition is characterized by midline repetitive hand movements, with onset early in life. There is an idiosyncratic pattern of an evolution of changing symptoms over time, with a period of autistic-type regression in early childhood, followed by the re-emergence of the capacity for social learning later. Throughout childhood into adult life, there is increasing muscle tone, resulting in an eventual picture of a generalized spastic paresis and mental retardation. The most striking feature is the fact that only five females have as yet been described with this condition. This strongly suggested that the disorder has a genetic basis, leading to the recent identification of the Rett Syndrome gene site. (Editor’s note: This example illustrates the importance of a meticulous behavioral observation, crucial to the initial delineation of the syndrome, which in turn leads to investigation of etiology and pathogenesis. Suggested reading: Flint, J., and Yule, W. (1993). Behavioral Phenotypes. In Rutter M. and Hersov L.,Editors, Recent advances in child and adolescent psychiatry . Kerr, A. (1992). Rett Syndrome: British Longitudinal Study. In Mental Retardation and Medical Care. Ed. J.J. Roosendall. Uitgegeverij Kerckbosch, Zeist. Plomin, R. (1991) behavioural genetics, In Genes, Brain and Behaviour. P.R.McGugh and V.A. McCusick Editors. Research publications-Association for Research in Nervous and Mental Diseases, 69: 165-180. Rutter,M.,et al (1990) Genetic factors and child psychiatric disorders-a review of research strategies. Journal of Child Psychology and Psychiatry,31:3-37.) There were four major sections to the program. 1) Molecular genetics: finding the genes and identifying their function. 2) Animal models: establishing and testing animal models of behavioral phenotypes. 3) Exploration of brain structure and function utilizing neuroimaging procedures and neuropsychological testing, and 4) Intervention strategies –psychosocial and pharmacologic. (Editor’s note: In trying to decide about the choice of information to report, I felt like I was in front of a sumptuous Scandinavian smorgasbord and deciding what to place on my plate. I followed the advice of a friendly Swedish waiter, "If you take too much, you’ll surely get indigestion," and settled on the section of animal models as a splendid example of modern, ingenious research approaches). Presently there is near unanimity of opinion that 1) All psychiatric disorders, including the neurodevelopmental ones, have a strong genetic component. 2) Rather than being a result of an abnormality in one single gene, they usually involve an interplay (interaction) of several genes, some of which may reinforce the functional disturbance under investigation, while others may have a beneficial effect of neutralizing the said abnormality. The "hunt" for specific genes in humans is cumbersome and probably will not become more efficient until after the beginning of next millennium, when the entire human genome is finally mapped. The increasing trend toward a dimensional approach to the diagnosis of mental disorders is reinforcing the opinion that most behavioral traits are not limited to one specific disorder but rather occur in many psychiatric and neurodevelopmental disorders. Such behaviors may include hyperactivity, aggressivity, social and learning deficits and many others. There is by now voluminous literature on how the study of such behaviors can be facilitated by using animal models. In a comprehensive article, Campbell and Gold (1996) describe one of the most exciting recent uses of animal models, namely the so-called knock-out or transgenic mice. These powerful research tools became available since the late 1980’s as a result of converging advances in the fields of molecular biology, molecular genetics, cellular biology and embryology. The mice have been genetically engineered to be perfectly healthy in all respects except save one: as embryos one gene was functionally destroyed. The animals grow up without its expression, a technique very useful for determining its function. When we create knock-out mice in the laboratory, we destroy the gene of interest by tricking the cell. Essentially, we fool it into exchanging its normal gene for an irrelevant disrupting DNA sequence we made in the laboratory, and we do so using the cell’s own recombinant machinery. The cell will actually dislodge its own normal gene, grab our disrupting sequence and splice it where the normal gene used to be. The cell literally replaces its own functioning gene for a non-functioning one, hence the term knock-out. (Campbell H. and Gold L.H. (1996) Transgenic modeling of neuropsychiatric disorders. Mol. Psychiatry 1:105-120). A good example of the usefulness of knock-out mice in a study of biological and behavioral variables was presented by Ted Brown from the New-York State Institute for Basic Research in Developmental Disorders: Mutant Mouse Models of Fragile-X Syndrome. The human fragile-x mental retardation is a relatively common disorder, that is due to the mutation of the FMR I gene located on the X chromosome. The discovery of this gene was followed by detailed identification of the many biochemical and cellular features of its protein product. However the way its malfunction leads to mental retardation has yet to be determined. The mouse seemed a very good model of such a study since the mouse FMR I homologue, fmr1, is 95% identical to the human gene. To create a knockout (KO) mouse, the mouse fmr1 was inactivated in several mouse strains. The results were rather startling. The fmr1 KO mice from a so-called C57BL6-129 strain showed only mild learning impairments on behavioral testing. However fmr1 KO mice from another strain, called FVB/N-129 showed a profound deficiency in their ability to learn the position of a hidden escape platform in "cross" water maze in comparison with normal littermate controls and C57BL6-129 KO mice. This behavioral difference between the two KO strains of mice indicate that the mere absence of FMR I gene is not sufficient to produce learning deficiency. Rather, it indicates an involvement of modifier genes in Fragile-X. Different strains of mice have different behavioral characteristics and the two above-mentioned strains are apparently quite distinct probably due to genetic variations. The interaction of some of the genetic differences with the fmr1 KO mutation could be responsible for the profound behavioral effect on the KO strain, just as strain differences profoundly effect the action of psychoactive drugs. The strain dependent nature of the KO phenotype may enable the identification of the genetic factor(s) that modify the effect of the fmr 1 KO mice. Such model will allow the investigation of critical questions about this disorder which are difficult to answer by any other experimental approaches; it will allow the analysis of the developmental etiology of fragile -X and eventually help to find an effective treatment tailored to the syndrome. (Suggested reading: Capecchi, M., R. (1989) The new mouse genetics: altering the genome by gene targeting. Trends. Genet. 5: 70-76; Koller, B.,H. (1992) Altering genes in animals by gene targeting. Annu. Rev. Immunol. 10: 705-730; In a recent article Cohen-Tannoudi and Babinet indicate that the emergence of gene inactivation in embryonic stem cells have revolutionized the field of mouse genetics. The availability of a rapidly growing number of mouse null mutants has represents an invaluable source of knowledge on mammalian development, cellular biology and physiology and has provided many models of human inherited diseases. In recent years, improvements of the original ‘knock-out’ strategy have considerably extended the range of genetic manipulations that can be produced. For example, chromosome alterations such as large deletions, inversions and translocations can also be designed and will facilitate the global functioning analysis of the entire mouse genome. This will extend the possibilities of creating models of human pathologies that frequently originate from the various chromosomal disorders. Finally, the advent of methods allowing conditional gene targeting will open the way for the analysis of the consequence of a particular mutation in a defined organ and at a specific time during the life of a mouse. (Cohen- Tannoudi, M., and Babinet, C. (1998). Beyond ‘knock-out mice: new perspectives. (for the programmed modification of the mammalian genome. Mol. Hum. Reprod. 4:929-938)
CLINICAL INSIGHTS Stanley I. Greenspan, MD WHAT TO DO WHEN A CHILD STARTS REGRESSING A child came in today who, when I saw him last spring, was beginning to use his words more, become more interactive and more of a preverbal, problem-solving communicator. When he went back to school in the fall, after having made lovely progress at all six developmental levels during the summer, he became much more perseverative, self-stimulatory, passive, and avoidant at home, although he was very compliant at school. The school program was a very controlled, discrete trial program where he complied, but was unable to generalize. In fact, outside the school, there was marked regression. His mother had such difficulty trying to get him to interact with her at home, when he seemed resistant, angry, annoyed, passive, and self-stimulatory, that in the last few months she gave up trying to interact with him in floor time, leading to even further regression. I saw him in my office and when he became perseverative, self-stimulatory, and self-absorbed his mother became frustrated. I noticed that she became more intrusive and more controlling during interactions with her child. The father reacted similarly. After observing the child and parents interactive patterns and doing a quick developmental profile of the child’s functional and developmental level, individual differences and interactive patterns, I tried to see the range of functioning the child was capable of at this time. In order to observe the child’s range I do a bit of coaching after I have had the chance to observe the child’s capacities, as will be seen shortly, we try to figure out the reason for the regression. With some coaching we switched the approach to one in which we followed the child’s lead to a greater degree and created situations where he demonstrated the initiative, that is, he was "doing" to his parents rather than them "doing" to him. With this change his affect began to blossom and a smile came to his face. He began flirting and looking at me and began interacting in a problem-solving way, using simple words and phrases. At that point, I could see that the child was picking up where we had seen him the previous spring and summer and was even showing some gain since that time. A good example of this was when he was trying to look at me and his mother was trying to get him to play with some colored blocks. She was being intrusive, holding his hands, and putting the blocks in his hands. He was being more resistant and began some perseverative activity. He began touching his mother’s face in a repetitive manner. When we switched that game to her blocking the view of me, with a little gleam in her eye, but letting him succeed in beating her so he could look at me, he began a little flirtatious game, trying to get around her blocking. When we took a big stuffed gorilla and the toy was trying to stop him from looking at me, the child had to knock the gorilla down or say, "go away" to get rid of it. With a big giggle and smile on his face, he began knocking the gorilla down and saying, with some cueing from his mother, "Go away, gorilla!" As a result there was some lovely and spontaneous interaction. In the same session a similar sequence occurred when the child was sitting on his father’s lap and was beginning to perseverate by stroking his father’s face with a glazed look in his eye. I suggested that Daddy offer to suck on those little fingers that were stroking him to try and create even more intimacy and closeness, but in an interactive way. The father opened his mouth and as his son was stroking his face, got one of the little fingers for a little game of sucking on fingers. The child pulled his hand away with a big smile and then put his fingers back, starting a nice flirtatious, interactive game. Later, the child was sucking on his own thumb and father, picking up on the same theme, said, "Oh, let me suck on that thumb!" He let his father suck on it for a moment and then pulled it back with a big smile on his face. Father said, "Give it to me! Yes or no!" The child said, "No, no!" but with a big flirtatious smile, putting his thumb up to his father’s face as though he wanted to play the game again. I suggested that the father offer his son his thumb, and we had a little back-and-forth thumb-sucking with a few words, like "my thumb" or "give it to me," and so forth. As the session progressed, the child began taking more initiative, flirting more, seeking his parents out, and using simple words and phrases, becoming decidedly less perseverative and self-stimulatory. We could see that the child, even though he had been regressing, still had a broad range of capacities when we interacted with him in a very flexible manner. Next we tried to figure out the reasons for the regression. When a child shows a pattern of regression, it is very important to explore all possible reasons, starting first with physical reasons, such as change in diet and nutrition, health/illness issues, medication and the like. Then it’s always critical to explore broad family and environmental changes, first on the physical side. Any change in the child’s ecology, for example, to a new schoolroom, painting in the house, exposure to anything that can be ingested or smelled that could create an allergic or toxic reaction should be investigated. Then it’s very important to look at what’s happening in the family—any changes in work status, health/illness, visits from in-laws, or the basic routines at home, as well as the sibling and marital patterns. It is also very important to look at what’s happening in the school program, with regard to the child’s changing developmental status. Sometimes a program that worked with the child when he or she was at the early level of development, for example, requiring more structure, won’t work with a child who now doesn’t require the structure and, therefore, resents it more. For example, we’ve seen repeatedly that as children progress to being able to use words purposefully and meaningfully, imitate words more easily, and are good initiative-takers and preverbal problem-solvers (as the child in our example had), they resent more and more a program which is overly structured and controlled. Such a program can lead to a state of frustration and then, sometimes, a more aggressive acting out. If the child is a more passive child, such a program can often lead to helplessness, shut-down, self-absorption, and withdrawal. Sometimes, when the child is compliant at school, as this little child continues to be, what he does there doesn’t generalize outside of school and is associated with regression in other settings (home, neighborhood, relationships with peers outside the school, as well as in spontaneous opportunities to interact with peers in the school setting). With the youngster in our example, what appeared to be happening, as we’ve seen with many other youngsters, was that he had made significant progress during the summer and was capable of using words meaningfully and of taking the initiative in regard to his preverbal problem-solving abilities. Now, he was much more frustrated in his school situation, becoming helpless and shutting down and regressing. We made a number of immediate changes, including shifting the floor time interaction patterns at home to a pattern in which the family got back to the basics. This leads to our second principle. After the situation has been diagnosed with a child, it is very important to then create interactive learning opportunities that can reverse the trend. Usually, this involves going back to the basics, that is, working up the developmental ladder in each and every play session or interactive session. With the child in our example, it meant focusing on his basic desires and needs, going for the gleam in his eye and the pleasure, and the basic sensory parts of the relationship (sucking each other’s thumbs, and the like) to reestablish a sense of relatedness, warmth, pleasure in the world, and pleasure particularly with his caregivers. It also reestablishes the desire to relate to them. Then we could reintroduce the second basic level that he could be purposeful and control his environment, rather than have his environment control him. This was absolutely essential for this youngster. We saw this in the microcosm here in our sessions and as the parents started doing these suggestions at home, he started taking even more of the initiative and being more flirtatious, using his words more spontaneously. The third broad principle is that caregivers, educators as well as parents, need to be aware that when the regression starts occurring there’s a common caregiving tendency that goes along with it. We collectively, parents and therapists, tend to get frustrated because a child is not doing what we want him or her to do. Then we tend either to get more intrusive or controlling, which the mother and father in our example started doing with their son, or we give up and become more angry easily. Sometimes, the tendency is to vacillate between giving up and not interacting in the old ways that were pleasurable and spurred the child’s initiative and becoming more controlling, intrusive, punitive, and angry. In this family, they became first more intrusive and controlling, then gave up, and then vacillated between giving up and controlling, intrusive behavior. It is critical to understand caregiving patterns, whether from a family member or an educator, and begin reversing that back to the basics, where there’s shared pleasure and where we challenge the child to take the initiative. In a sense, the family and educators need to go against the natural, intuitive grain. When a child is being difficult and is not doing what we want him to do, every bone in our bodies tell us to become more controlling because we’re annoyed. That’s simply what human beings do when they’re annoyed. They control, intrude, give up, or get angry. Instead, here, we need to do the opposite, becoming more fun loving, warmer, and follow the child’s lead even more to reestablish the basic pleasure in relating. As a general rule, in all relationships, if a person can go against his or her natural instincts, at times of difficulty, providing more warmth and support, stirring the other person into more initiative taking, usually the pattern gets reversed more quickly. The program for the youngster we’ve been discussing involved going back to basics at home, reducing his school day from six hours to three hours, focusing on individual therapies rather than the more structured, controlling, discrete trial drills. The extra time in the day could be used at home to go back to the basics, as we described. As a result of this program, we’re starting to see the child return to a pattern of progress. In addition, we’re trying to change his school situation so there’s a more appropriate program for him where he can take the initiative and be interactive with children who are reasonably verbal, since he’s ready for that type of challenge. In general, once a child becomes capable of imitating words, using them spontaneously, and has reasonable mastery of the preverbal problem-solving skills, it is very important for him or her to be in a spontaneous, verbally-interactive setting, which is being arranged for this child at the present time. In the meantime, mother is using more time at home to help him get back on an appropriate developmental course, where he’s taking the initiative and is enjoying relating and communicating with others. UPCOMING EVENTS: ILLINOIS ICDL The IICDLD has developed a web page: http://ezad.com/iicdld and can be reached via e-mail at IICDLD@ezad.com PHILADELPHIA AREA ICDL: Next meeting is scheduled for 9/99 to be held in King of Prussia, PA. Contact person is Steve Glazier, (215) 782-3160. NOVEMBER 12, 13, 14, 1999 – INTERDISCIPLINARY COUNCIL ON DEVELOPMENTAL AND LEARNING DISORDERS: APPROACHES TO DEVELOPMENTAL AND LEARNING DISORDERS IN INFANT AND CHILDREN Annual ICDL scientific meeting covering research in the clinical and biomedical fields. For information please call (301) 656-2667. To be held in the DC area in Tyson’s Corner, Virginia.
The Greater Boston–area ‘Greenspan Group’ This is a group of parents focused on utilizing Dr. Stanley Greenspan’s techniques. Sally Savelle is the group contact person. She talks with new parents to make sure that they understand the goals of the group, and then sends them the group’s Statement of Purpose, list of pertinent phone numbers, publications and several articles related to floortime and techniques to use. Sally can be reached through e-mail at Ssavelle@AOL.Com or by phone at (978) 287-4837. |
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