Editor’s Note

        Jo Raphael, MSW, LCSW-C

            Molly Romer Witten, Ph. D. 

Welcome to the new Best Practices newsletter! Through sponsorship from the Unicorn Children’s Foundation, Best Practices will be available on the web at www.icdl.com and in hard copy through subscription. We are moving to a quarterly newsletter format. Regular features will include updates on regional and international networks, clinical cases and insights, upcoming events and, a dialogue with you, in the form of letters to the newsletter, articles you send us for consideration, or topics you ask us to discuss. Although we were formed just a few years ago, the Interdisciplinary Council on Developmental & Learning Disorders (ICDL) has grown quickly. 

We would like to introduce ourselves and the Interdisciplinary Council on Developmental and Learning Disorders to you. 

The council is truly interdisciplinary in that all the professionals working with children with developmental and learning problems, as well as parents, are included. As a group of highly motivated parents and professionals, we are very interested in emerging findings, practices and technologies that allow us to support the development and progress of children with communication, relationship, and learning disorders. In our newsletter, we want to network and share information with one another. 

We, (the newsletter editors) are Molly Romer Witten and Jo Raphael. Molly is a clinical psychologist and Jo is a clinical social worker.  We have each been working professionally with children and their families for many years. With guidance from Dr. Stanley Greenspan, Dr. Serena Wieder and our talented editorial board, we hope to create opportunities for discussion around clinical practices, educational issues, and parenting. We will accomplish this goal by providing a forum for a thought provoking exchange of ideas. We hope the newsletter will allow all of us that engage in this work to teach, learn, and share our ideas, thoughts, successes and failures with each other. If you would like to share a clinical strategy, discuss a re-occurring problem, or identify a new method that seems to work for you, the newsletter would like to hear from you. 

Please write to us to post information, to submit an article for consideration or to share your thoughts. 

You can reach us by e-mail at (Molly) besobeso@enteract.com or  (Jo) Jo@ICDL.COM. 

Best regards, 

Jo and Molly

 Jacob’s Story Part Two:

Each Day is Another Adventure 

Editor’s Note:  The author of the following article has chosen to remain anonymous in order to protect his son’s status.  However, he and his wife are eager to respond to parents who are facing similar challenges.  You can reach Jacob’s father by writing to him c/o our editor: Jo Raphael, ICDL, 3213 Midfield Road, Baltimore, Maryland 21208 or JO@ICDL.Com.  Thank you. 

This week, over three years since I presented Jacob’s Story at the Zero to Three Conference and it subsequently appeared in the Zero to Three Journal, I received two letters from parents who had read the story.  One letter was from Manila, the other from South Carolina.  Each letter told the parents’ story of their autistic children.  One parent spoke of having two autistic boys.  In the three years since the publication of “Jacob’s Story” we have received letters and e-mails from around the world.  Parents with children with serious developmental delays and communication disorders tell us of their stories and ask for guidance and direction.  I am grateful for their kind words and pleased that Jacob’s story has been helpful.  

Rebecca and I have received numerous requests for a follow-up on Jacob’s story.  It is a difficult thing.  Jacob’s Story, first presented as a speech to the Zero to Three Conference and later reprinted in the Zero to Three Journal, represented somewhat of a catharsis for us.   Beginning with a difficult and painful challenge we persevered and, with the help and guidance of gifted professionals, were able to claim victory.  It was an intense, tumultuous period filled with remarkable developments.   

The subsequent three years have brought us a lovely sense of normalcy.  We begin our days like most families with breakfast and car pools.  There is homework, piano lessons, play dates and cub scouts.  Pokemon has entered our lives with a vengeance.  And while Jacob continues to make consistent progress, the last third of his nine years have been, well, pretty normal.  His friends and his teachers do not know of his background.  The school year is ending and he will continue on to third grade.  We have begun to think about sleep away camp. 

Having begun this journey with an evaluation that labeled him as having pervasive developmental disorder and being told that he would have to be institutionalized, the normalcy of his and our lives is, perhaps the greatest miracle, the greatest victory of all.   

I, therefore, begin Jacob’s Story, Part 2 with a simple yet glorious statement, “Jacob is fine”.  As I write, he is practicing piano in our den.  He is tall and handsome and strong.  He has friends and plays Gameboy and computer games.  It is his job to feed the dog and he does it twice a day without a hitch.  He loves Calvin and Hobbs and shares Garfield’s impish sense of humor.  At our recent Passover Seder, he recited the four questions, the traditional role for the youngest child at the table.  

Jacob is in his third year in his current school, almost at the end of second grade...So far so good. For the first two years we waited for the phone call from the teacher to tell us he is not right, not appropriate, not succeeding.  But for three years he has come home with a smile which work marked with “excellent”, “well done”, “terrific” and all the appropriate stamps.  Our most recent parent teacher conference was wonderful.  The teacher had only praise for him.  He is reading on grade level.  His math skills are on grade level.  His teacher tells us, “He is a delight to have in class”.  

This not to say that school is always a breeze.  Rebecca or I work with him every night for at least an hour.  His mind wanders.  He sharpens his pencils, takes another break for apple juice.  But, ultimately, although sometimes not until the next morning, he makes his way through it all.  He signs his name in cursive on all of his assignments.  He places them in his knapsack, makes his lunch and gets ready for school.  Perhaps the most wonderful breakthrough of the year is that he is reading!  It has been a slow process but he is reading.  For us it is another milestone, another signal that he will be okay.   Now he is learning Hebrew.  He struggles putting together the consonants on top and the vowels on bottom and to remember that the letters go from right to left.   

While the academics of school seem to be going wonderfully for Jacob, his relationships with his peers still seem to be a challenge.  He is not quite there yet.  We organize as many play dates as we can and they seem to go fine. Friends will now stay over for 2-3 hours.  Because his interests are different from that of his peers, not all his classmates want to get together.  Our list of available play date partners seems limited to a small cadre of friends.  We keep on calling.  

Group situations are more difficult for Jacob and generally, he finds himself on the periphery.  Kids make fun of him.  He doesn’t participate in sports with them.  They say he is different and it breaks my heart.  Most of the time Jacob seems not to mind.  He is happy with himself.  He sees himself as being smarter than his peers.  He thinks that they just don’t get it.  They don’t understand him, they are not at his level. One day, he came home from camp and reported that the kids were making fun of him.  My heart sank.  But he followed, “dad, don’t they know that different kids are good at different things.”   

Sports and athletics are difficult.  We got him a new bike for his eighth birthday.  A year later he has yet to learn to ride.  After much urging we finally go out for the lesson.  He dons his helmet.  We walk down the driveway.  He is off, down the street, tentatively with my hand grasping the back of the bicycle seat.  Time and again I repeat: “Keep pedaling” “Look forward” “Don’t worry, I won’t let go.”  Yet as soon has he picks up some speed he pushes the pedals backward to slow down.  He is nervous, scared.  The lessons never last more than 10 minutes.  More often than not we both end up angry and frustrated. 

Little league baseball was also hard.  He stood in the infield, complete with his bright red uniform.  A slow grounder would head in his direction and he would just stand and watch it approach.  I would cringe and wonder what the other parents were thinking.  At one point Jacob turned to me and asked:  “Can’t I play a game that I can move around more.  We tried soccer, with little more success.  He could not “stay in the game” and was unable to keep focused. 

The implications of sports in our society go beyond the playing field.  Especially for young boys it is often the entrance pass into the peer group.  Will his failure in sports isolate him from his peers?  I’m sure I am more sensitive to his difference than he.  I want him to fit in, to be one of the boys.  Perhaps, as I look back on my own childhood, I was never one of the boys.  My early days and sleep-away camp experiences were awful...painful.  I console myself with the thought that I survived.  By the time I was in high school, I had grown into my body and had become a good athlete.  I was one of the boys.  Perhaps, it is unrealistic for a parent to think that far in advance but I want everything to be just right – and I want it now. 

Yet Jacob is different.  There is something quite remarkable about him.  His extraordinary imagination and curiosity are clearly on another level than his peers. Recently, after much urging from him (kvetching and whining – two elements of communications he seems to have mastered rather nicely), we bought him his own camera.  The first roll of film was sacrificed when he opened the camera to see how it was doing.  The second roll was completed in fine fashion.  Yet, for Jacob, it was not enough just to own a camera.  It was an opportunity to learn more.  How does it work?  What does the lens do? Why do you need negatives?  How do you get the pictures to be bigger than the negatives?  We make wonderful, rich interactive circles of communication.  I draw him pictures displaying how an enlarger works.  We leaf through Macaulay’s “How Things Work”.  Jacob cannot wait to see the outcome of his picture taking so we leave the house early Monday morning and drop of the film before school.  That evening, he reminds me three times to pick up the photos.  He possesses an amazing memory - when it involves something he wants.  The photos arrive the next day and he makes two albums – one of friends and one of family members.  Now he wants an enlarger.  He wants to know what kind of light you can use in a darkroom.  

One evening, Jacob wants to know how cities began.  I’m not an expert on how children learn but, to my thinking, it is an extraordinarily complex question.  It involves the awareness of cities as complex social and economical constructs.  I answer him the best I can, beginning with a description of how long ago people would meet all their needs by themselves.  I speak about how increasingly people began to rely on each other and individuals took on separate tasks and jobs.  He seems to understand the concepts.  Another day, Jacob postulates that there must be an opposite force to gravity.  He states that on certain planets, like earth, gravity is the stronger force and so people don’t float away.  On other planets the other force may be stronger.  The physics may not be exact – but that he is wondering about it and theorizing is astonishing.  

Floor time still provides rich, wonderful opportunities for circles of communications. His imagination is lovely, rich and multi-layered.  One morning’s play brought both a delightful dialogue between us as well as a fairly high level discourse on growing up vs. remaining a child.  No props were involved, no toys, no action figures, just our shared imagination.  Jacob became Super Kid – protector of children.  I became Dr. Grownup spreading the evils of the bizarre world of adulthood.  Dr Grownup swoops down, takes away children’s hot dogs, hamburgers and fries and replaces them with liver and brussel sprouts.  Children are locked in their messy rooms and forced to place every toy on the appropriate shelf.  A battle of epic proportion ensues.  Each character brings forth his most mighty weapons – Super Kid uses powerful farts and burps while Dr. Grownup fights back with grownup morning breath.  Intergenerational Armageddon continues until Super Kid handcuffs Dr. Grownup in a space ship and sends him off to burn up in the sun.   

The story is too much fun and Super Kid demands more.  We create henchmen for Dr. Grownup: 

• Mr. Taxman who taxes all the kids’ lemonade money, taxes the toys and then takes the dog bone and taxes that.

• Nameless bureaucrat demands that children fill out multiple forms for everything.  Super kid sends Nameless Bureaucrat in a space ship to the sun.  We hear the evil Nameless shouting as he head off to destruction, demanding that a Permission to Burn Up a Spaceship form be filled out in quadruplicate.

• Dr. Useless Information, the last of the evil villains demands that each child learn countless meaningless facts such as the capital of Angola and the anatomy of a brussel sprout (our favorite target for scorn).

Through countless hours of floortime and hundreds of stories he has developed a rich symbolic world and a high level of symbolic awareness.  He understands morals, values and deeper meanings.  He sees the big picture.   

Recently we purchased ‘Throwbots’, something like a graduate level Lego kit for more advanced kids.  At two for ten dollars at the local toy store it was a bargain.  Jacob did a beautiful job of putting them together, in spite of the seemingly incomprehensible instructions.  Upon completion we had ourselves two four-inch plastic robots that with a flick of the wrist tossed small Frisbees - a triumph of toy making.  Naturally, for our floor time together, one robot became the good guy and the other one quite evil.   

But this is where Jacob’s wonderful play imagination showed its stuff.  In his story, one of the robots was being programmed to keep poachers off an island.  Unfortunately, the robot escapes before the programming is complete and he believes he must destroy all ships approaching the island.  His lasers sink cargo vessels and ocean liners and the passengers narrowly escape on life rafts.  An epic battle is required to stop the misprogrammed and misguided robot.  The unstated lesson of the play provides a wonderful insight – aggression and hostility are necessary ingredients for all of us.  They are required to protect and defend ourselves against those who would take advantage of us.  Yet, without the proper maturity and thoughtfulness this aggression becomes uncontrollable. 

For a nine year old boy who is teased by his classmates because he lacks athletic ability, but who also knows is bigger and stronger than most of his classmates, the unspoken lessons of this play session are critical.  He talks about certain classmates who taunt him and imagines what he will do to extract revenge.  Yet, he is aware of the consequences of hurting another.  He struggles with that part of him that is motivated by hostility and aggression.  He accepts it as a necessary part of who we all are and seeks to keep it in check.  All of this within the sheltered world of fantasy play.  All of this while having a great time.  All of this is floortime. 

As the years pass, it becomes easier to look back at the early days of Jacob’s recovery; multiple speech therapy, occupational therapy and play therapy sessions; Tomatis, Fast Forward, homeopathic medicines, highly restricted diet – hundreds of bottles of pear juice.  Most of all, I think back on thousands of hours of floor time.  Rebecca, Jacob’s older sisters, our au pair and I were all involved and all took floor time turns.  So many times friends and family told us that we should be chronicling everything, keeping a journal.  We should write a book.  An extraordinary story was unfolding before everyone’s eyes.  In retrospect, writing about it while it was all happening was probably impossible.  We were too busy doing it, living it.  Healing Jacob was all consuming.  And that was the way it had to be.  In an era of rapid solutions and instant gratification there was no replacement for long hours and tireless effort.  There could be no short cuts.  Not only was our family overwhelmed by Jake’s healing we were embraced by it.  This is perhaps the most important message that I would share with parents.  This isn’t one priority it is the only priority.  The encompassing nature of the healing process was, in fact, what made it so powerful.  It was not just about doing things – it was a matter of reframing our lives and reshaping our values. Floor time is not just a method but a way of thinking about communication and relationships.   

Looking even further back, I recall the early days of the dawning awareness of the severity of his condition.  These memories are almost too painful to bring into consciousness.  But they emerge…Jacob’s first day in pre-school, watching him sitting in the corner, lost and terrified, crying desperately; Jacob disappearing during a visit to a sleep away camp, the desperate search to find him and finally discovering him sitting in the cool shade under a camp bunk sifting his hand through the dirt; Jacob howling in pain after he had pulled his dresser on top of himself.  These memories haunt me to this day.  In spite of all our effort on his behalf, I will always wonder if I could have done more and done more sooner. 

Rebecca’s commitment and dedication to heal Jacob was stunning.  My personal drive was obsessive.  I was driven to heal Jacob.  It was as much for my own well being as for his.  When we learned, sometime during the early stages of Rebecca’s pregnancy, that he was to be a boy, my immediate joy was soon replaced by the emergence of a wave of depression and sadness.  It was not terribly difficult to figure out that I was once again mourning the death my father who passed away when I was nineteen.  Jacob’s birth was, at once, a realization of my dreams and a reminder of my loss.  It is in this context that you must understand the devastating impact of Jakes illness, and the prospects of, in effect, losing my son as I had lost my father.  And, that is how I perceived Jake’s illness – he was becoming lost to me.  We would never be able to communicate.  I would never be able to be a father to Jacob as my father could no longer be to me.  Rather than healing the pain of my father’s death, those pains, that feeling of profound loss were now re-ignited with renewed vigor. 

Yet, it was this overwhelming pain and fear that propelled me forward and drove me to heal Jacob.  Perhaps it was pure survival instinct.  Perhaps I didn’t think I could survive the loss of both father and son.  I was driven to repair the damage caused by my father’s death and to prevent, at all costs, the loss of my progeny.  Early on in Jacob’s treatment I commented to Rebecca “as I healed Jacob I would heal myself.”  Rebecca commented, correctly so, on the danger of such a plan – the unstated reality being that Jacob just might not get better.  Yet, for me, there was no option.  I would not accept and I could not sustain the notion that he would not be healed.  And so I was driven.  And so I played with Jacob hours each day.  And it was never enough.  And nothing else was important.  Nothing else mattered. 

This perhaps is a second lesson I might share with parents. Every parent must find his own motivation and every parent must fight his own demons.  Yet, I have seen fathers and mothers who are driven from action rather driven to it.  I have seen parents paralyzed by their own fears rather than being pressed into action. I have witnessed parents who immerse themselves in the broad political and social issues rather than focus their own children.  I do not minimize how emotionally difficult it is to have a child with special needs. There is a viscerally raw quality of pain, hurt and fear that a parent feels when confronted with a devastating illness of a child.  I have felt it.  But parents with children with serious communication disorders must somehow embrace and mobilize these feelings.  The emotional presence and focus required for floor time demands it.  Charting and actualizing a therapeutic and educational path cannot be accomplished without it. 

For Rebecca and I, the intensity of the early days is fading for us and, more and more, we slip in to a “normal life”.  To our dismay Jacob has become a Pokemon aficionado.  He knows all their names, their powers and their attacks.  He mimics their sounds and has binders filled with cards.  Perhaps it is a rationalization, but Rebecca and I feel, that, perhaps Pokemon is not so bad for Jacob.  It has provided him with an entry into the world of his peers.  And, in fact, he brings his Pokemon cards to school to play and trade with the other kids.  On play dates, the cards are strewn over the floor and the games begin.  In the best tradition of “in for a penny, in for a pound”, we bought Jacob a Gameboy for this ninth birthday, a complete breech of the floor time ethic.  Please don’t tell Dr. Greenspan.  

Rebecca and I wonder if Jacob will ever learn of his background.  At times Jacob seems to be on the verge of some awareness of his past.  He is certainly aware that he is a year older than his classmates and he has questioned why.  He remembers some of the therapists.  He questions why he has to participate in Fast Forward Two.  We tell him it is to help him learn to read and he accepts that explanation.  We wonder if there will ever be time that we will tell him the whole truth. Will there come a time where it will be his right to know of his past?  Will there come a point when he will reach a level of awareness that he is somewhat different?  Perhaps that will be the true measure of his and our success. 

Most mornings six a.m. arrives much too soon.  Jacob knows he is not to wake us up before six and his arrival is more accurate than most alarm clocks.  Generally, I awake to find him sitting next to me on my bed, expounding on something.  Perhaps he is completing a conversation we began the evening before. Perhaps he was looking at a book before waking me and he tells me of his new discovery.   I drag myself out of bed and, after a cup of coffee; I head downstairs to the den.  The den is our play space, more accurately, our clubhouse.  At six a.m. we are alone as if we were up in a tree.  Perhaps we talk about photography or about the Civil War.  Perhaps I read him Calvin and Hobbs.  Perhaps we make a story with Playmobil.  It is a start of another long day.  But I wouldn’t change our six a.m. time alone for anything in the world.  In a moment of reflection I think back upon where we came from and what we have accomplished.  In a frightening moment, I think about what might have been.  I cannot imagine a father and son who love each other more.  I can’t image being more proud of a child.  I still don’t know if he will go to MIT.  If he does it will be no surprise.  The memories of PDD will continue to fade.  We will have long past stopped worrying about a call from a teacher.  Someday, he will be one of the boys.  I sip my coffee and go back to the story.  It is just another day in the life of an extraordinary child.

REGIONAL NETWORKS

Lori Jeanne Peloquin, Ph. D 

Philadelphia  

Following the first International Conference of the Interdisciplinary Council on Developmental and Learning Disorders in Rockville, Maryland in November of 1997, a group of professionals from the Philadelphia area decided to form a regional ICDL.  Administrators from the Montgomery County, Pennsylvania, Department of Developmental Disabilities (a Philadelphia suburban county) spearheaded the initial efforts.  In 1998 they sponsored a seminar with Jean Ruttenberg, the Executive Director of the Center for Autistic Children, presenting a model for assessment and treatment planning.  The seminar was well attended, primarily by providers of early intervention services in Montgomery County.  Other highlights of that first year were viewing Dr. Greenspan’s videotape of the first ICDL meeting from March 1997, and distributing a provider resource list survey. 

The group lost some steam during the end of 1998 and did not reconvene until 1999.  They met monthly from January to June of 1999 with a smaller, and more clinically oriented focus.  They obtained the full text of the Functional Emotional Assessment Scale (FEAS), developed by Dr. Greenspan and Georgia DeGangi, Ph.D. and adapted it for training purposes.  They spent the majority of meetings reviewing videotapes brought in by participants and practicing scoring and assessment with the FEAS. 

Beginning in September of 1999, they began meeting at the Center for Autistic Children in Philadelphia that has generously provided meeting space and mailings of meeting announcements at no cost. They meet 9:30 AM - 11:30 AM on the third Tuesday of every month.   Meeting minutes are now completed and forwarded to all members and the national ICDL following every meeting, and they have developed the following mission statement:  

“Our group includes professionals from the different disciplines working with children and families where there are developmental and/or learning disorders. Families of children with severe disorders of relating and communicating are also welcomed.  Our aim is to improve the identification, prevention, and treatment of developmental and learning disorders.  We share a common perspective in viewing these disorders from a developmental, individual differences, relationship based orientation (D.I.R.), most closely associated with the work of Stanley Greenspan, M.D.  We meet monthly to discuss clinical issues that impact upon our work with children.  We are committed to keeping abreast of and sharing current research and innovative practices in our respective fields.  While our perspective is D.I.R., we are open to considering eclectic approaches that have proven to be successful with these challenging children.”   

The group has agreed upon the following areas of focus: 1) Participants share what interventions are proving successful in their work.  2) Case presentation and problem solving with difficult cases.  3) Videotape viewing with different topics.  4) An ongoing discussion of how the D.I.R. model is implemented in the classroom. 5) Developing a library of educational materials, books, tapes, etc., for use by parents and professionals in the Philadelphia area. 

Attendance at meetings this year has ranged from three to nine participants.  Despite the small numbers, there has been representation from most of the professions involved with working with children with developmental and learning disorders.  These include: psychiatry, psychology, occupational therapy, speech/language therapy, special education, movement therapy, music therapy, program administrators, and parents.  

Meetings are usually divided into two parts. Administrative issues and announcements (e.g. upcoming trainings, communication with the national ICDL, etc.) and a clinical presentation or discussion.  Some of the areas we have explored this year have been: how movement disorders are involved with disorders of relating and communicating, how inclusion works in practice, the importance of auditory processing and motor planning and sequencing abilities to achieve success in the classroom, Individualized Educational Plan development with a D.I.R. perspective, floor time strategies for children with severe physical disabilities, outcomes and challenges for adults with autistic spectrum disorders, interventions and coexisting problems for older children with Asperger’s Disorder and/or High Functioning Autism, and the subjective experience of doing floor time and how this might be related to research into non traditional aspects of interpersonal psychology. 

For more information contact Steven Glazier by phone at (215) 782-3160 or by email at sbglazier@aol.com.

Upstate New York/Rochester  

The Upstate New York DIR Interdisciplinary Professional Consultation Group began meeting in 1998.  The group meets monthly from 7-9 p.m. in Rochester in a school district administration building that is provided free of charge.  No fees are charged.   The group has included professionals and students from many disciplines, including psychiatry, psychology, special education, speech therapy, occupational therapy, music therapy, social work, and program administrators.  Paraprofessionals and student floor-time helpers are welcomed.  The group has focused on watching videotapes of work with individual children and families with a goal of improving work in the DIR model.   Additionally the group exchanges resources, provides members with information from the ICDL and DIR conferences and occasionally invites guest speakers.  The group has ranged in size, but now has a small core group that attends regularly.  Members attend from a wide geographic region extending across most of Upstate New York.  

The Rochester area DIR parent group began meeting in March 1999.  The initial meeting included a presentation from a father who had been using the DIR approach with his son for the past 5 years, entitled “A Father’s Perspective”.  The group now has 10-15 families who attend with some regularity, with many fathers and couples attending.  The group watches videotapes of parent’s floor-time work with their children and provide each other with feedback.   Occasionally professionals from the community are invited for question and answer sessions, or parents report on information from the DIR/ICDL conferences.  Since there are several other Autism parent support groups in the Rochester area, this group focuses almost exclusively on the DIR approach and related interventions.   

For additional information about either group, contact Lori Jeanne Peloquin, Ph.D. by telephone (716-244-0613) or e-mail (peloquin@frontiernet.net).

INTERNATIONAL NETWORKS

Chile

Cecilia Breinbauer,M.D.                                 

Since 1998, more than 170 professionals from different disciplines, working with children with developmental disorders, have been introduced to the DIR model in Chile. We have being giving a 30-hour basic training course, given over 12 weeks for 2.5 hours each session.  It is open to small interdisciplinary groups (18-25 people each time), a methodology that has facilitated interaction and enrichment from different disciplines.  

We started our Chilean chapter on July 1999, with more than 80 active multidisciplinary members, all of who were introduced to the DIR model through these training courses. Active members make a commitment to keep working with other professionals involved in the rehabilitation of children they treat, using the DIR model, to assist at ICDL CHILE conferences, to introduce DIR model in teaching activities within their own fields, to educate on early diagnosis and referral, and to pay a membership fee to cover organizational costs. We expect to keep growing during this year.  

In order to be able to work as a team we decided to organize our local board into two levels: we have a core group of 6 executive directors and an advisory group of 6 professionals, all of whom are from different disciplines. The executive directors meet once a week or every 2 weeks. They also meet once a month with the advisory group. These meetings help to plan and delegate work to be done in order to achieve the different goals set.  

We had our first conference on August 1999 and our second conference on June 16, 2000. This last conference was geared to pediatricians, regular and special preschool educators and all professionals from different backgrounds involved in the rehabilitation of children with developmental difficulties.  Many parents attended too, and they decided to start an ICDL CHILE Parent Network. We expected to double the attendance we had in 1999 and planned an auditorium for 150 people. To our surprise the conference was completely booked 2 weeks beforehand and people kept calling asking to attend.  We were able to accommodate 180 people and found that there is a big need in Chile for these types of conferences. We will keep this in mind for our next conference in 2001. 

One of the main goals of ICDL-CHILE is to educate Chilean pediatricians, child neurologists and preschool educators in early diagnosis and referral guidelines. We translated the Functional Developmental Growth Chart and the Functional Developmental Growth Chart Questionnaire into Spanish. We expect to collaborate in translating the ICDL guidelines once they become available. During this conference, we presented early diagnosis and referral guidelines to pediatricians and early child educators, introduced the CHAT screening, the Functional Emotional Growth Chart and Questionnaire. We were happy to see how comfortable pediatricians felt with the Functional Emotional Growth Chart. 

As Chile is a small and far away country we were able to widely introduce DIR before ABA. Although ABA is not actively present in Chile, a few families have traveled with their children to centers in USA where they have been introduced to ABA approach. Some of these families have asked a few ICDLCHILE therapists to be trained also in ABA techniques, so they are currently integrating ABA and floortime with severe delayed children. 

During the conference we addressed the differences between ABA and DIR approaches, the benefits of both, when to use each approach and how to integrate them around the needs of a particular child, as part of a comprehensive rehabilitation program.  Dr. Greenspan addressed these topics through videotape. 

Other topics during this conference were:

·         Critical deviations of motor development during first year and their possible consequences in other developmental areas,

·         Sensory Integration aspects to be considered by preschool educators,

·         School integration programs for children with communication difficulties,

·         The computer as an aid in education of children with severe motor or communication delays,

·          Language development in children with auditory impediments.  

We are very excited with the positive response of Chilean professionals to the introduction of the DIR model in our country. We even have some professionals from other countries, living in Chile (Peru, Mexico, Spain), that have taken the basic course and want to spread the model in their own countries. At this point we have 60 professionals on our waiting list for future basic training courses.  We have been able to reach not only the capital city (Santiago), but also the North and South of Chile. Occupational Therapists, Speech Pathologists, Psychologists, Special Educators, etc., all therapists directly involved in the daily rehabilitation work with special needs children, are very committed to improve their professional tools in order to better help these children. Our big challenge now is to reach and sensitize physicians, e.g. Pediatricians, Child Neurologists and Psychiatrists. 

Cecelia Breinbauer, MD

Child Psychiatrist                                  

ICDL-CHILE Director                              

 Executive and Advisory Committee:

Paula Philippi (Child Psychologist), Veronica Pesse (Speech Pathologist), Pamela Yanez (Special Educator), Oriana Vilches (Family Therapist), Paola Meneghello (Early Child Educator), Fresia Vargas (Physical Therapist/S.I.), Enrique Henni, (Occupational Therapist/S.I.), Alejandra Rocca (Occupational Therapist/S.I.), Vilma Torres (Child Psychologist), Viviana Vicuna (Occupational Therapist), Antonella Urzua (Speech Therapist).

THE PARENT NETWORK

                                Deborah Flaschen

The ICDL Parent Network enjoyed a productive spring and summer.  Nearly 80 parents joined us at the networking reception held during the Infancy and Early Childhood Training Course in April.  Parents from across United States were joined by parents from South America, Europe, Asia and the Middle East.  There was time for parents to talk among themselves and share individual ideas and resources; as well as time for parents to discuss collective priorities and projects requiring action.  The Parent Network’s stated mission was reaffirmed by these discussions:

• To support families of children with developmental and/or learning disorders by providing resource information and opportunities for communication;
• To advance the work of ICDL and promote the Developmental, Individual-Difference, Relationship-Based (DIR)  intervention model; and
• To advocate for sound public policies that support children with developmental and/or learning disorders and their families.

Dr. Greenspan joined the reception to welcome and encourage our individual and collective efforts as parents.  Following Dr. Greenspan’s remarks, Parent Network Steering Committee members described the various projects and task force committees currently  at work.  

The Public Awareness committee is supporting the work of First SignsSM, a nationwide public awareness program created to educate pediatricians, health professionals, and parents to recognize the early warning signs of autism and other developmental disorders in early childhood (zero to three) and to understand the crucial importance of early intervention. First Signs, Inc. has recently received sufficient funding from the State of New Jersey to roll out its program statewide. For more information on First Signs, contact Nancy Wiseman at nwiseman@firstsigns.org .  

The Regional Networks committee continues to support the establishment of regional networks that promote the work of ICDL and the DIR intervention model and by providing guidelines for establishing regional groups, supporting group leaders, maintaining a database, and referring interested parents to the appropriate network.

For more information about Regional Networks, contact Sally Savelle at ssavelle@aol.com or Jane Downey at jdowney@email.com.  

The  Parent-to-Parent committee aims to establish a “parent to parent’ support network by identifying and training a corps of volunteers available to communicate with other parents seeking support and information.  Parent volunteers will provide the benefit of their experience, point other parents to resources in their region, and lend an empathetic ear.  A pilot project of Parent-to-Parent is soon to be launched.  We hope to report on the pilot project results in the next newsletter.  Our ultimate goal is to provide “parent to parent” support globally.  For more information on Parent-to-Parent, contact Joan Levin at drjhlevin@aol.com.  

The Public Policy committee has recently contacted the major groups and organizations concerned with autism and  developmental and/or learning disorders.  We are seeking to open the lines of communication between the ICDL Parent Network and those organizations actively promoting public policy initiatives and legislation affecting children with these disabilities so that, where appropriate, we might expand the base of families supporting these initiatives. 

A small group of Parent Network Steering Committee members is currently working with Drs. Greenspan and Wieder to produce a 60 minute DIR/Floortime Training Video for families and professionals working with children with developmental and/or learning disorders.  We hope to begin filming this summer.  

Another parent is working with Dr. Wieder to develop a “DIR/Floortime Kit” for families new to DIR and Floortime.  The “DIR/Floortime Kit” will be available for downloading through the ICDL website and will include materials that explain the ‘why’ and ‘how’ of DIR/Floortime.  Our goal in producing the kit is to help new families as they begin the journey. 

BIOMEDICAL

        Leon Cytryn, MD

 Highlights of the Meeting of the Society for Neuroscience

November 1999-Miami Beach, Florida 

Developmental Amnesia

Faraneh Vargha-Khadem (University College London Medical School) and her colleagues discovered a new syndrome called developmental amnesia.  Patients with this disorder are able to read, write and comprehend in school, yet can’t remember the events of their lives, such as television programs, telephone conversations, or visitors. “It’s a paradox how they can have this profound impairment yet develop a large knowledge base,” she said.   

By inspecting their brains using magnetic resonance imaging (MRI), the London team learned that the children had suffered profound damage to their hippocampus, a small sea-horse shaped structure located in the interior of the brain known to be associated with memory formation.  The hippocampus of the injured children had between 40 and 60 percent less volume than that of normal individuals.  

Researchers have focused on uncovering the cause of developmental amnesia and have now identified 19 children and young adults with the disorder.  All of them had suffered oxygen deprivation to their brain from an epileptic episode, cardiac arrest, or a difficult birth.  The team then focused their attention on five subjects, now age 16 to 22, who had suffered oxygen deprivation at birth. 

Since early oxygen deprivation can damage other brain areas, causing disorders such as cerebral palsy, the London team used magnetic resonance imaging scans to ask whether patients had suffered brain damage outside of the hippocampus. The scans revealed that a portion of the basal ganglia and a part of the thalamus had also been damaged, yet the patients showed no sign of the paralysis associated with severe oxygen deprivation.  

Vhargha-Khadem is convinced that at or soon after birth, the children were deprived of enough oxygen to damage the hippocampus, thalamus, and putamen, but not enough to cause the more severe damage that leads to cerebral palsy. Further, because the hippocampus, but not the cortex, was damaged, the patients develop specific defects in episodic memory but can learn and remember facts.  

Presently, her team is following 50 children who have documented cases of birth asphyxia to see if they show signs of developmental amnesia. Dr. Vhargha-Khadem thinks pediatricians should do the same. If they diagnose the disorder early they might be able to provide special training to help the children remember events, perhaps with computer-assisted training.  (Editor’s Note: This is a good example of a combination of basic research and clinical insight and application. The work also contributes to the debate over the interaction between memory and learning.  Recommended Reading: Tsien J. Z. “Building a Brainier Mouse,” Scientific American, April 2000) 

Brain Injury

In contrast to the recent advances at repairing spinal cord injury, brain injury seems to present almost insurmountable barriers to treatment. However research presented by Kook In Park (Yonsei University, Seoul, Korea) suggests that human neural stem cells could provide a mechanism for combating brain injury.  The researcher showed that human neural stem cells injected into the brains of rats that had received a brain injury could replace the lost neural cell populations, raising the hope of treatments for brain injury and neurodegenerative disease. 

To try this out Park cultured stem cells harvested from the brains of 15-week-gestation human fetuses, with the cultures being stable for up to 1 year. To see how these cells would react when implanted, Park took some of them and added 1 percent serum to the culture medium. Ninety five percent of the cells grew neurofilaments and many started to express various neurotransmitters such as glutamate, GABA, acetylcholine or tyrosine hydroxylase. 

Given this success, Park moved on to in vivo studies in which he created a focal injury in the right brain hemisphere of 7 day old rats, and then three days later injected the human cells into the damaged area. Two weeks later he found that the foreign cells had engrafted into the injury site and the area immediately surrounding it. In addition cells had migrated across the corpus callosum to the contralateral hemisphere.  Immunohistological staining showed that within eight weeks of being implanted, the cells were developing into neurons, oligodendrocytes and astrocytes, and as in the in vitro studies, the cells started expressing neurotransmitters.  

Progressive Post-Traumatic Syringomyelia (PPTS)

Another breakthrough in using human stem cells to repair central nervous tissues was presented by Peter Reier and his colleagues (Brain Institute of Florida College of Medicine).  They successfully treated patients with a condition called “progressive post-traumatic syringomyelia (PPTS).  Most spinal cord injuries, including that of PPTS patients, result in a bruised cord rather than a severed cord.  That initial injury causes nerve tissue to die, leaving a fluid-filled hole called a syrinx in the center of the cord.  Most patients, while partially or totally paralyzed, nevertheless remain stable for the remainder of their lives.  But in PPTS patients, the role in the spinal cord grows.  To fill that hole and treat the disorder, the Florida team used fetal cell transplants, which have been successful when treating animals with injured spinal cords. 

The researchers enrolled seven patients with PPTS, and transplanted each of them with fetal central nervous system tissue from six to nine-week-old embryos.  Reier explained that these fetal cells are more mature than embryonic stem cells, but still have the potential to develop into a variety of types of spinal cord cells.  (Editor’s Note: This study, like the preceding one, indicates the progress being made in repairing damaged nervous tissue.  Its clinical implications are enormous, both for injuries and degenerative changes which only a few years ago were impervious to any treatment.) 

Broca’s Aphasia

Vilayanur Ramachandran and Eric Altschuler of the Brain and Perception Laboratory at the University of California, San Diego, have tested a novel form of auditory therapy on a patient with Broca’s Aphasia resulting from a stroke.  Patients with this condition have trouble speaking even though their comprehension of language remains intact; it is one of the most common disabilities associated with stroke.  Currently there are no effective treatments for the condition. 

This new experimental therapy is based on an idea that has already been utilized for the treatment of certain forms of paralysis.  Like aphasic patients, people who lose movement of, say, an arm, are deprived of some form of output.  However, experiments suggested that by watching the movements of their good arm in a mirror, and repeating them with the bad arm, such patients can to some extent “remember” the movements they lost.  By giving them visual feedback, it is possible to improve their output. 

The researchers have tested an auditory version of this therapy on an aphasic patient a 62-year-old man who lost most of his speech following a head injury and seizures.  The patient was only able to utter nouns.  Other elements of speech escaped him and he was incapable of constructing sentences.  So Altschuler created tapes of whole sentences for him to listen to and simultaneously repeat.  He practiced for a half an hour every day, in two sessions of 15 minutes, and every two weeks the tape was changed.  After about four months he was using full sentences.  He was able to leave coherent messages on answering machines, and both he and his friends remarked on his improvement.  (Editor’s Note:  These findings may prove useful in children with language disorders.)

Fetal Alcohol Syndrome

Melissa Marino (University of South Carolina, Columbia) discussed her studies on fetal alcohol syndrome.  This condition results from the toxic effects on the fetus from maternal alcohol consumption.  The symptoms include low birth weight, head and facial abnormalities and there are some indications of learning difficulties.  A particularly important time may be during early fetal development when many women are unaware that they are pregnant.   

Marino studied four groups of rats that were given alcohol to create maternal blood alcohol concentrations of approximately 320 mg/dl at different stages of pregnancy, the human equivalent of drinking a couple of glasses of wine.  One group was given alcohol during gestational ages 1 to 10, a time period that is similar in terms of brain development to the human first trimester.  The second had alcohol for gestational days 11 to 22 (the second trimester), and in the third group, alcohol was given to pups over postnatal days 2 to 10, a time roughly equivalent to the human third trimester.  In the fourth group alcohol was given through the three trimesters. 

Marino discovered that rats that had been exposed to alcohol during the second trimester had significantly reduced levels of activity at 16 days post natal age, while the activity of those offspring who had only received alcohol during the first or third trimesters appeared to be unaffected.  When set a task of finding a submerged platform in opaque water, the rats that had been exposed to alcohol through all three periods performed significantly worse than the other groups.  From this, Marino and her colleagues conclude that certain behaviors are affected if alcohol is presented during critical periods of development, but others require prolonged exposure.  (Editor’s Note:  These findings have important implications for those developmental disorders which may be caused by an adverse event which happened during a certain stage of pregnancy.) 

Another study of fetal alcohol syndrome was presented by Andrea Elberger (University of Tennessee) showed damage to the part of the brain called corpus callosum (which connects the left and right hemispheres) in neonatal rats, if the mothers are given the equivalent of three glasses of wine during the first trimester of pregnancy.  This she believes correlates well with the MRI findings in humans with fetal alcohol syndrome, which show that they often have thin, or even no corpora callossi.  Elberger points out that these animals were only exposed during the first ten days of gestation, the development equivalent of the human first trimester, a time that predates the formation of the pyramidal cells.  She concludes that there is no safe time to drink alcohol during pregnancy.  (Editor’s Note:  These findings indicate the need for major public health efforts to reduce alcohol consumption in pregnant women.  See Ikonomidou C., et al. Ethanol-induced apoptotic neurodegeneration and fetal alcohol syndrome. Science 2000 Feb 11: 287:1056-60.)      

 CLINICAL INSIGHTS 

Moving From Fragmented to Logical Thinking and Mastering Beginning Academic Skills: At Home and at School

      Stanley I. Greenspan, MD

 Parents and educators are often unsure about the best way to help a child who is still unable to organize thoughts (fragmented thinking) and master beginning academic skills.  Many children make wonderful progress and learn to relate to others, use gestures purposefully, learn to use ideas and words to communicate, and progress to the point where they can communicate very simple wishes such as  “want juice now,” even do some beginning pretend play (dolls hugging or kissing), but are not yet able to have a long, logical conversation where they answer “why” questions as well as abstract “what” questions on a regular basis.  As a consequence, children with this pattern, if they are fortunate enough to have a lot of ideas and a lot of wishes, tend to express their ideas in a more fragmented manner, jumping from one idea to another without always being able to construct logical bridges.  They have a particularly difficult time responding to the ideas of others, often because their auditory processing capacities may fall behind some of their expressive capacities.  

Interestingly and importantly, many children with this pattern have strengths with certain types of memory tasks and are able to recognize words, and begin to read, as well as count and even do some simple calculations, like 2 + 3 = 5.  Their biggest challenge, however, is the fact that they cannot fully comprehend and think about, or discuss what they read because of their challenge with organizing their ideas and thoughts.  They have a difficult time using emerging quantity concepts and math skills in a meaningful way for the same reason.   

The problem confronting parents and educators often is what to work on.  Should they push ahead with a child’s emerging islands of academic skills using, for example, math, reading, or spelling worksheets or should they work on the child’s fundamental challenge with organizing thoughts and ideas (i.e., basic thinking skills) by having lots of long, conversations where the child is helped and challenged to build bridges between ideas?  Unfortunately, all too often, we feel we must make a choice between these two alternatives, and the choice often leads to a focus on structured exercises that work with the emerging academic skill sets.  When we do this, however, we compromise helping the child master a more fundamental need i.e., to learn how to think logically.  Logical thinking is necessary for using any reading or math skills, as well as for all other academic work and understanding how the world works.  

The fact is that we can help a child work on both his thinking skills and his emerging islands of academics at the same time.  We don’t have to make a choice where one suffers at the expense of the other.  To work on both together, however, we have to alter, to some degree, the way we have historically thought about educating children.  The first change in our thinking has to be with regard to prioritizing the goals of education.  The first goal must be to help children be attentive, related, purposeful, and to be able to think creatively and logically. Many mistakenly believe that the goal of education is to teach individuals how to be independent. When in fact the goal of education is to enable people to learn from others and to build skill sets for thinking and problem solving.   Unless a child can do all these things, it’s impossible to fully master reading, writing, or arithmetic.  The first priority for the child we have been discussing and similar children, therefore, involves fundamental thinking and relating skills.   

Once this priority is established, we can create methods to work on thinking skills at the same time that we work on the child’s emerging academics involving reading, math, and even writing.  For example, if we’re working on both thinking skills and, let’s say, math skills together, we wouldn’t have the child fill out a worksheet on her own, even if she could.  Instead, we would have an aide or teacher have an ongoing, logical discussion with the child about the problems on the math sheet, working on, perhaps, a few of them using manipulables and lots of negotiation involving back-and-forth exchanges of words and concepts to figure out how many blocks she wants and how many will she have left if the aide takes two for herself.  Such negotiation and interaction around blocks, cookies, coins, etc., enables the child to be talking to another person while practicing organizing thinking and learning something about quantity and math in an interactive, dynamic way at the same time.  Similarly, if they’re working on reading or spelling, or matching shapes or colors, they would employ the same strategies utilizing long, back-and-forth conversations discussing the challenge at hand.  The child, for example is reading the word “chair.”  The other person would immediately ask, “Where do you see a chair?” and then see which chair the child likes better, his chair or the aide’s chair.  If the other person is lucky, he may be able to challenge the child to answer the question, “Why is your chair better than my chair?”  The child may say, “My chair little,” which is his way of saying it fits him better.  The goal is to embody some word identification and reading with discussions that help logical thinking and comprehension at the same time.   

Sometimes, what gets in the way of long, problem-solving conversations as a method for teaching thinking and emerging academics at the same time is the notion that children should learn to do these academic type activities independently.  To be sure, that’s an ultimate goal, but premature independence for a child who can’t yet consistently answer “why” questions is a little bit like asking a preschooler to go out and round up his own meal.  Eventually he should be responsible for food and shelter, but in the early years, it is important to give him the foundation that will get him there.  Attempting to foster independent learning habits before a child is capable of answering “why” questions and having internal dialogues involving ideas for himself will slow down, rather than speed up, the ultimate attainment of independent learning capacities.   

It is important, then, to involve a child both at home and at school in long, dynamic conversations about the subjects the child needs to learn.  Worksheets, passive listening, and observing others, while all valuable in the future, should not be the emphasis while the child is attempting to master basic thinking, and often, relating skills.   

Many of the children who are working on the challenges described above also need a little more work on some preverbal issues involving being able to engage in a continuous pattern of relating and affective gesturing with educators, parents, and peers.  In other words, the children tend to engage for a time but then become a little self-absorbed and have a hard time with a continuous flow of affective gesturing.  Here, the long conversations with the aide or the teacher, and at home with the parent or with peers, as well as long play sequences help the child master some of these remaining preverbal skills as well as the new thinking skills. 

Sometimes, children with these patterns also go through times where their behavior becomes disorganized and they may aimlessly wander around the room or become a bit impulsive.  In this circumstance, there’s a temptation to reach a conclusion that the child requires more structure and the teacher or aide will take the child to a table, sit him down and do some very structured tasks, such as a worksheet or sentence completion type questions.  Here the educators are providing the structure for the child, either with his behavior or with his thinking skills.  If we only do this (as has often been done traditionally), the child has no opportunity to learn the building blocks of regulating and organizing behavior, interaction patterns, or emerging capacities for using ideas.  Here too, the goal must be creating learning opportunities where the child will master the important building blocks of organizing behavior and thinking.  For example, if the child is getting up from his chair and seems to want to take an impulsive or aimless stroll around the room, walking with him and finding out where he’s going and why he’s going there or what made him get up, provides an opportunity for the child to learn to identify his own inner feeling states that motivate him and practice interactive and thinking skills on the move.  Now we have a moving, verbal, interactive, and hopefully, organized thinker because we’ve provided the opportunity for communication and relating on the move.  Obviously, we can’t let the child disrupt other children, but a walk in the hall or around the periphery of a room or even outside on a nice day with a supportive aide can provide a wonderful context for helping the child find meaning and logic in his own behavior.  He may discover that “Walking feels good after I sit for a while.” or that “Getting up and jumping feels good after I color,” etc.   

What we’ve learned in recent years is that the ability for logical thinking has its own developmental steps that involve relating, a continuous flow of back-and-forth gesturing, and a continuous, rapid, back-and-forth exchange of ideas.  In this context, to promote logical thinking, it’s much more important to help the child use ideas interactively in a back-and-forth exchange than it is to foster long, grammatically correct sentences.  Often, the two goals can be accomplished at the same time, but if an emphasis has to be made, it needs to be on the back-and-forth exchange and the rhythm of affective interaction that accompanies this exchange, rather than on the formal structure of the communication in its own right.  When this is done, the child has a better opportunity to become a warm, related, interactive logical thinker, who can use correct grammar and learn to read, write, and do math in a meaningful way.  

It is essential to continue to remind ourselves that the most important goals of the family and of the educational system are one in the same—to facilitate the development of the capacities to relate, to communicate and to think. 

Let Me See Those Beautiful Brown Eyes

            Esther B. Hess, Ph.D. 

As a clinical child psychologist working with children on the autistic spectrum, I am often trying to help the children, along with other social tasks, to maintain a sustained eye gaze.  Being able to look someone in the eye, at least in American culture, is considered socially appropriate and suggests that they have the ability to maintain an acceptable level of social contact.  Individuals on the autistic spectrum, characteristically have great difficulty looking directly into the face of another person for any length of time.  This difficulty is often misinterpreted as rejection on the part of the recipient and consequently, the child and or adult who is unable to sustain eye gaze is typically mislabeled as 'non-caring' or at the very least, as 'odd'. 

I was recently working with one little boy who was diagnosed as being “high functioning autistic”.  He has excellent verbal skills and is mainstreamed in a regular kindergarten class with the assistance of a shadow.  At the request of his mother, much of my floortime intervention had been to concentrate on helping him make and sustain eye gaze with, in particular, other children. 

When I do my floortime exercises with this child, I routinely incorporate the entire family into the intervention.  In this case, I noticed that besides my patient, his father, too, seemed to have some sort of social communication disorder (my guess was Asperger's Disorder, not formally diagnosed).  Even though the dad's social gestures with me were awkward, he was, however, able to make and maintain good sustained eye gaze.   

After several futile attempts at trying to get the boy to look at me in a continuous fashion, ("Come on Bobby, let me see those beautiful brown eyes of yours"), I had a brainstorm!  I would enlist the help of his dad to be my floortime partner (or more aptly, I would be the father's helper). 

I went up to the father and said "Look, Charles, your son is having trouble maintaining sustained eye contact.  I'm sort of stuck.  Can you tell me how you learned to do it?" 

Charles looked at me somewhat surprised and answered, matter of factly, "Well, someone just explained it to me".  Enchanted by the simplicity of the message, I got excited and asked if Charles would explain how to get and maintain sustained eye gaze to his son.  Shortly thereafter, Dad and son were seated at the kitchen table, while I hovered in the background. 

"Son, let me explain to you how to look people right in the eye".  ("Remember to tell him to let you see those beautiful brown eyes of his", I whispered from the shadows).  "Uh huh", uttered Dad in somewhat of a tolerant acknowledgment. "Son, let me explain to you how to look people right in the eye.  You just look right at the little black dot in the center the eye and if you get bored, you look at the other little black dot in the other eye, O.K?"   "O.K. Daddy, I get it".  

Ah, I wish all my interventions were that simple to understand. 

OCCUPATIONAL THERAPY

The Art and Science of Therapy

Beth Osten, M.S., OTR/L

  “The child must organize his own brain; the therapist can only provide the milieu conducive to evoking the drive to do so”. This is the first sentence in the intervention chapter of Jean Ayers’,1972 book, Sensory Integration and Learning Disorders. The therapeutic process she describes involves two basic elements: 1)a “just right” physical environment and 2) a “just right” interpersonal environment between the therapist and the child. Ayres focused on the former but her writing reflects a deep understanding and respect for the power of the interpersonal context of treatment.  

As Occupational Therapists, we aim to provide the child the freedom for self-directed exploration. Our job is to carefully create an environment that challenges the child developmentally and simultaneously provides the interpersonal supports to develop a positive adaptive response.   As therapists, we must be able to read the child’s response to assess the fit between the situation and child’s functional capacity to respond. This is done both by 1) altering the environment and by 2) creating the emotional environment that encourages and supports child to continue exploration beyond their comfort level.  Ayres stresses the need for the therapist to elicit adaptive responses rather than to demand responses through structure. She warns that too much structure will hinder self-organization and growth. 

Recently, research on motor learning and on the neurobiology of interpersonal experience is bridging the two elements of the therapeutic process.  We can understand and refine the “art of therapy” by studying the “science” that describes how learning occurs.  The interplay between action and emotion is becoming increasingly clear. Daniel Siegel summarizes recent work in this area (Seigel, 1998).  Interpersonal experience lies at the very heart of the growth of the mind by shaping brain structure.  Enjoyable, and developmentally appropriate interpersonal experience in infancy helps children learn to regulate their state, integrate information from distinct elements into a functional whole, and move from meaning their parents attach to their behavior to themselves attaching meaning to experience.  

The neurobiology of affect suggests that the therapeutic relationship that we establish with a child can be a powerful force in state regulation, perceptual integration, for mediating the flow of emotions that accompany exploration and new learning. Many of the processes, which are addressed in sensory integration therapy, are not discrete sensory or motor functions. Integrated, adaptive motor learning occurs within a dynamic and responsive physical and social environment. Children learn through contexts, which are mediated by the accompanying interpersonal experience. The act of moving cannot be separated from the meaning of the movement. To try to separate one from the other weakens the efficacy of the treatment process. We see that rather being separate elements, the physical and interpersonal aspects of therapy are parts of a unitary process.  

Ayres, A.J. (1972).  Sensory Integration and Learning Disorders. Los Angeles, CA: Western Psychological Services. 

Seigel, D.J. (1998).  The Developing Mind: toward a neurobiology of Interpersonal Experience. The Signal: Newsletter of the World Association for Infant Mental Health.  6(3-4): 1-10. 

BOOK REVIEW:

Building Bridges through Sensory Integration

Ellen Yack, Shirley Sutton, and Paula Aquilla

“What Do You Mean By Sensory Integration?”

Molly Romer Witten, Ph.D. 

If you work with children who have issues of affect regulation and processing, then you have come in contact with the concept of sensory integration. Trying to explain to parents the meaning and importance of sensory integration is probably one of the hardest tasks a therapist, regardless of discipline, faces.  

At the beginning of an intervention program parents often feel overwhelmed when they look at their child’s functioning the way the ‘professionals’ do. They may know something is amiss in their child’s functioning. They certainly have great motivation to understand the issues and provide solutions. Nevertheless, they have neither the training nor the experience to know what behavior to look for, nor how to arrange the environment to support their child’s sensory needs.  

During the middle phases of the intervention process the concrete behaviors that parents have come to understand as sensory integration evolve fluidly, and constantly. Just when a parent thinks that sensory integration means bouncing on a ball during circle time, so that their son or daughter can remain in the group, the child no longer requires a bouncing ball, but needs lots of opportunities to answer questions. Often parents find themselves confused by the changing ‘face’ of sensory integration as a neurological construct and interpersonal process. By the end of the intervention process, parents accurately perceive their children as functioning in the typical range. However, they struggle to understand why their child’s therapists continue to discuss the ‘problem with sensory integration’.  

At all these points, and at many points in between, I have often wished there would be an easy to read, yet accurate book, about sensory integration. One that parents could read at their own pace, not when they are under pressure in my office, usually in the first visit. I also wish that the book could be written without any jargon, in such a way as to entice parents and professionals into thinking about behaviors that they are uncomfortable identifying as problematic for a child. I don’t want a text book that will be used to cure insomnia. Finally, I want the book to be engaging! Ellen Yack, Shirley Sutton, and Paula Aquilla have written just such a book in “Building Bridges through Sensory Integration”. What a great first reader for anybody who asks, “what do you mean by sensory integration?” 

The book is organized from the most factual matters (at the beginning) to the most helpful strategies and suggestions (the second section). That’s not to say that the first chapters defining sensory integration and occupational therapy aren’t helpful, but they function to provide a context for parents and others not familiar with the jargon and diagnosis of SID (sensory integration disorder, for short). The later chapters have titles that, those of us who work with children with SIDs, are enticed by, such as “Strategies for Challenging Behaviors” and “Activity Suggestions”. There are many ‘case studies’ and clinical  anecdotes throughout the book that help the reader get the feel for, and focus on, specific patterns of behavior. The style of the writing is straight forward, and best of all, there is no reason to begin at the beginning.  If the reader has a specific question or issue, chances are that they will be able to go straight to the appropriate chapter and get the support and information that they are looking for. However, I encourage everyone to start at the beginning. The introduction provides valuable information not just about sensory integration, but also the profession of occupational therapy, as well as what a child can gain from engaging in occupational therapy.  

There are two weak elements to this book. The first is that the authors make an implicit assumption that occupational therapists are the primary professionals to address sensory integration issues. They build no bridges between the role of the occupational therapist and others such, as speech therapists, psychotherapists, or educators, all of whom also clinically and professionally address issues of sensory integration from different perspectives. This attitude actually runs counter to the authors’ own collaborative voice, as well as encouragement to parents that they can do much to help their child develop more effective sensory integration capacity. It seems to have been an oversight. The other weakness is that, while relationships are acknowledged implicitly as the vehicle for providing sensory integration intervention, this perspective is nowhere stated in the book itself. The authors don’t seem to recognize their own power of relating, especially as it comes through the pages of their book. These vulnerabilities aside, the authors’ collective ‘voice’ does communicate the centrality of an attuned, and satisfying relationship to their style of treatment.  

Any parent or professional new to the concept of sensory integration will come away from this book with a clear understanding of what behavior constitutes sensory integration, a bag full of useful strategies for promoting sensory integration, and it will have been a pleasurable experience. Given all the useless ‘training programs’ being offered, one wonders why this book isn’t yet widely known.

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