In Memorium – Jane A. Koomar, PhD, OTR/L, FAOTA

Jane KoomarMany people are already aware that our beloved friend and colleague, Dr. Jane A. Koomar, passed away this year on February 23, 2013 after a three year battle with breast cancer.  Jane was the heart and soul of her private occupational therapy clinic, OTA The Koomar Center (previously known as OTA-Watertown).  She was an icon in her field and changed for the better the lives of thousands of children, parents and therapists.  The Spiral Foundation deeply mourns her loss but endeavors to continue her work with our research and education activities.

To see  a lovely memorium written by OTA and Spiral Foundation staff please visit our website, http://www.thespiralfoundation.org, or by clicking here.

Donations in Jane’s honor may be made to the Spiral Foundation to support research in sensory integration.

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Remembering Jean: AOTA’s 2011 A. Jean Ayres Award-Winner Jane Koomar Reflects On Her Mentor

In April I was honored to receive the American Occupational Therapy Association’s 2011 A. Jean Ayres Award, which aJane Koomar & Ellen Cohnccording to AOTA, is given annually,

(T)o recognize occupational therapy clinicians, educators, and researchers who have demonstrated sustained commitment to the application, development, or testing of theory in occupational therapy. The award is given in honor of A. Jean Ayres, PhD, OTR, whose concentration on developing theory in support of practice was of great significance to the profession of occupational therapy.

I was delighted to be so honored by my colleagues and peers, and what makes this award even more special is the fact that Jean Ayres was both my mentor and a cherished friend. It is not often that one can say both things about someone who shapes their professional life, but I am fortunate to have both worked with her and known her personally. Ayres was an occupational therapist, psychologist and neuroscientist who developed the sensory integration theory, assessment and intervention, now known as Ayres Sensory Integration (ASI) Intervention, which is practiced at OTA-Watertown and other SI-based OT clinics around the world.

Ayres started her work in the University of Southern California’s Brain Research Institute in the 1950’s, developed her theory of sensory integration in the 1960’s, and published her landmark book, Sensory Integration and Learning Disorders, in 1972. In the late 1970’s I was in Cincinnati and fortunate to be working with Virginia Scardina, who is also well-known to folks in the SI community. I had completed my fieldwork with Ginny and then worked in Cincinnati where I assisted in Ginny’s three week and three month sensory integration training program for OTs. Ginny was a big supporter of Jean’s work and, when Jean came to speak in Dayton at Ginny’s behest, I met her and was completely inspired. In the early 1980’s, a faculty was developed to certify therapists in sensory integration, and I was honored to be selected by Ginny, then accepted by Ayres to be a faculty member and help shape the first, formalized training in the field. What an amazing group of women, and all were—or went on to become—leaders in our field.

In 1984, I graduated from one of Ayres’ final four-month training classes at USC, just before she retired. And despite her dislike for traveling, I persuaded her to come to a conference at Boston University in September 1985, exactly when Hurricane Gloria hit the region. Thanks to my coordinating the conference successfully under duress, the executive director of Ayres’ non-profit suggested that I be added as a board member. This allowed me to visit California for board meetings four times a year, and each time I shared Friday night dinners with Jean and her husband Franklin. These dinners hold some of my most treasured memories of them.

Colleagues ask me what it was like to study directly with Jean. The closest I can say is that I felt like I had been knighted. There is nothing to compare with having Jean Ayres pause in the midst of a meeting on the SIPT development, to look out the doorway onto a treatment session of a particularly challenging child where I had been able to “turn the corner” with the child, and receive an affirmative sign showing she was well pleased with the transformation. Ayres was a sensitive person, very sensitive to criticisms from inside and outside the field. In so many ways her ideas were ahead of their time: the contributions that sensory stimuli make to other parts of our nervous system, to development overall, and our emotional well-being, to name a few.

To this day I still see the revolutionary aspect of her thinking. My recent work combining SI with psychological treatment for children with trauma and attachment issues has opened her ideas to a new audience of people, who see how much more effective their work with these children can be with the addition of SI-based interventions. When sensory processing disorder (SPD) becomes part of the fifth edition of the APA’s Diagnostic and Statistical Manual of Mental Disorders (DSM) as we expect it to in 2013, this will further open the way for cross-disciplinary education and research to further Jean’s incredible work.

I was doubly delighted to share the Ayres Award with Ellen Cohn, ScD, OTR/L, FAOTA, who is also a dear friend and member of the Spiral Foundation board. Ellen has contributed significantly to occupational therapy: she launched the development of the Fidelity Measure for use in research on the effectiveness of ASI, which is now a highly regarded tool for use in all intervention studies involving ASI. As part of the Sensory Integration Research Collaborative, Ellen contributed to the development of Goal Attainment Scaling and studies on physiological measures and sensory modulation. Most recently, she conducted research on the parents’ sense of competency for those raising a child with a sensory processing disorder. You can read more about her outstanding research and teaching at Boston University’s website.

In this photo with Ellen, I’m wearing a magenta scarf. It was Jean’s favorite color, and anyone who visited her clinic was greeted by magenta paint on her clinic walls. Magenta also reminds me of Jean’s legacy, and the number of lives touched by people in our field thanks to Jean Ayres’s courage, creativity and passion.

Helping Holly: Sensory Integration In A Captive Chimpanzee

In June 2009, I received one of the most unusual requests in my career as a sensory integration-based occupational therapist. The St. Louis Zoo had a chimpanzee named Holly, who was exhibiting behaviors different from other chimps: among other things she was neither grooming other chimps nor allowing herself to be groomed in a typical way. She plucked her hair excessively. She displayed body rocking movements and was seemingly fearless in situations where other chimps were more cautious. They hypothesized that Holly may have a chimp form of autism

Our colleague Dr. Margaret Bauman checked out Holly, and after careful review of the evidence she suggested instead that Holly had a form of sensory processing disorder (SPD). The Spiral Foundation was contacted, and I joined a team of experts bridging human and animal health disciplines to look into Holly’s condition.

I jumped at the chance to help, and started adapting some of our pediatric sensory integration checklists for use with chimps. Once the zoo staff administered the checklists to all of their chimps as a baseline, we administered additional tests to ensure that Holly’s differences were not simply personality traits.

With the combined data, I created a phased intervention program to address Holly’s particular needs. Phase one emphasized tactile and proprioceptive inputs to help her build body awareness and motor planning skills. The second phase was intended to strengthen her vestibular system and address deficiencies in her higher-level motor skills, with additional heavy work to solidify her proprioceptive gains from phase one. Happily, we found that after the treatments she demonstrated significant reduction of atypical and stereotypic behaviors, while increasing time spent in positive occupations such as resting and interacting with others.

From a researcher’s perspective, this unusual request holds interesting opportunities. In the short-term we have the opportunity to improve the life of an animal that was clearly out of sync with her environment. Longer term our work may help develop a chimp model of SPD, which could have far-reaching benefits for the welfare of chimps and other animals in captivity. Lastly, establishing a strong model and treatment for SPD in chimps and other non-human primates can help inform and advance diagnosis and treatment models in humans.

I have had a wonderful experience working with the St. Louis Zoo staff, the team working on Holly’s condition, and Holly herself. While I may never again get such an unusual request, this experience has opened my eyes to the universality of sensory experiences, regardless of age, gender, race, and now, species.

For more stories, info, resources, facts and tips, go to www.thespiralfoundation.org

The Most Overwhelming Place On Earth? My Sensory Child At Disney World

The Disney World Resort in Orlando bills itself as “The Happiest Place on Earth.” But if your child has difficulty with loud noises, crowds, lights and the physical sensations associated with amusement park rides, is there still magic to be found at one of Disney’s theme parks? The answer is a qualified “yes,” and perhaps my family’s experiences at the Magic Kingdom and EPCOT can help you plan your own Disney vacation.

The most important tip is to set realistic expectations for yourself, your child and any other family members with you. Understanding our son’s capacity to withstand the onslaught of sensory information tempered our thoughts of hours and hours of rides, parades and fireworks. Set smaller goals and build on the success of each day. Our first day we spent in the hotel pool and talked about what we’d see and do. The second day we walked around EPCOT for two hours and rode the ferry boat between our hotel and the park. Each day we planned to do a bit more, and on our last day we spent almost seven hours at EPCOT and rode six rides, including “The Test Track,” a roller-coaster style ride that simulates car endurance tests.

Disney is very welcoming to all of their guests, especially those with special needs. We learned to obtain a “Guest Assistance Pass” before our first park visit. The pass was a golden ticket to a great trip: flashing the pass before entering any ride queue grants special access for your child and family members, cutting waits from hours to minutes unobtrusively. To get the pass we went with our boy to a Guest Services booth, located at the entrance to any park, explained our situation and let them know how long we’d be at the resort. Bring a doctor’s note to help ease the process. One pass covered our entire stay, it cost nothing and was an absolute godsend. Also, keep in mind that quiet rooms and medical stations are hidden around the park and available in an emergency. Just find a uniformed employee—or “cast member”—and let them know what you need.

Pack a bag with snacks and water. This is more economical and easier than concession stands or restaurants, which are often very crowded and always very expensive.

Plan ahead for meals. Our son has a limited diet, so we brought food to Florida and learned the hard way that getting an in-room microwave may come at a steep cost. We stayed at The Dolphin Hotel, and after several phone calls to the concierge we were presented with a microwave and a room service bill for nearly $400! After a few more calls to the concierge the matter was settled amicably. Overall the Dolphin Hotel was a great option: cheaper than a Disney resort and close to many Disney attractions, so please check it out. But next time we’re buying an inexpensive microwave on Amazon.com—about $70—and having it shipped to our attention at the hotel. You may be able to do the same with your child’s favorite non-perishable foods to save space in your luggage and prevent an expensive and unwanted cab ride to a local supermarket. If your child has a wider diet, make sure to make reservations each day for lunch and dinner. During peak times the wait for meals at walk-up eateries can be long, and in the case of sit-down restaurants you may not even be able to get in without a reservation. While this may appear to limit your fun, nothing is less enjoyable than standing in a line with an unhappy kid.

Rent a stroller. The Magic Kingdom covers 107 acres. EPCOT is almost three times larger, and the other attractions are also quite large. Kids we saw melting down were usually on foot. One- and two-kid strollers are available for rent just inside the park entrances, and buying a multi-day ticket brings down the per-day price to about $30. You can’t take the stroller outside the park, but can get another at no additional cost by presenting your receipt if you leave and go back to a park later.

Take frequent breaks. If you can, get an early start and head back to your hotel mid-morning. If you can’t, camp out in a shady spot away from the crowds (there are quite a few!). The parks get especially busy in the hours leading up to lunch and again after dinner. However you and your child recharge your batteries, take extra time to be rested and prepared for the crowds, noise and myriad distractions back at the parks.

Lastly, take time for yourself and your partner. Disney offers tons of activities for kids and adults, from scuba diving to wine tasting to garden tours! Swap shifts watching the kids for some time on your own. Hire a babysitter for an evening or two. Since our son is stand-offish with strangers, our babysitter arrived after he fell asleep (the going rate is about $17 per hour plus tip and parking). On certain nights the parks are open into the wee hours of the morning, so make the most of your time there to capture some magic of your own.

For more stories, info, resources, facts and tips, go to www.thespiralfoundation.org

Creating A SAFE PLACE For Attachment | 2011 Boston Symposium: Sensory Processing, Emotion & Behavior

On March 24, at Microsoft’s offices in Waltham, MA, the Spiral Foundation will present “Utilizing SAFE PLACE for Professionals.” Attachment (the affectionate relationship that binds a child to a parent or caregiver) and sensory processing (the ability to take in information from our worlds and stay regulated and able to perform our daily activities) are critical for building a foundation for subsequent emotional development in children. Over the last few years, Spiral Foundation President Jane Koomar, Ph.D, OTR/L, and clinical psychologist Daniel Hughes, Ph.D., have worked together to increase awareness of the importance of these dynamics in early childhood.

With additional work by their Boston-based colleagues Deborah Rozelle, Psy.D., and Stephanie Shellie, LMSWC—who trained with Dan in his Dyadic Developmental Psychotherapy (DDP)—and Jane’s occupational therapy colleagues at OTA-Watertown, there is growing evidence that a combination of sensory occupational therapy and psychological counseling can best address the needs of a child who has experienced attachment issues due to abuse, neglect or multiple foster placements.

To provide an overview of their work, Jane and Dan developed a two day course for parents titled “SAFE PLACE.” While the intention of this model is to create a literal “safe place” for children, the name stands for additional concepts. Sensory Attunement Focused Environments or Sensory Attunement Family Enjoyment derive from the OT’s fun and physically stimulating sensory integration work. PLACE stands for Playfulness, Love, ACceptance and Empathy, the core concepts of Dan’s DDP model. In the SAFE module parents learn how to create environments and activities at home to help their child with sensory regulation, and to stimulate rhythmic, mutually enjoyable interactions. The PLACE module offers the ability to develop strong interconnected relationships as the basis for all other parts of development.

SAFE PLACE works best when mental health professionals and occupational therapists work together with parents and children, providing co-treatments when possible, and sharing their observations with the family. This weaving-together of support for the child and parent in multiple developmental areas creates support and respect for what can often be felt as deep pain when working to parent a child who has trauma and attachment difficulties.

An introduction to SAFE PLACE is available on DVD for $25.00, and contains excerpts from the one-day workshop presented by Dan Hughes and Jane Koomar. The event on March 24 is the pre-conference institute for Spiral’s 2011 Boston Symposium titled “Sensory Processing, Emotion & Behavior: Clinical Innovations & Research.” The symposium gathers nationally recognized speakers on SPD, attachment, trauma, bullying and sensory integration-based therapeutic interventions. In addition to Dan and Jane, speakers include Spiral Research Director Teresa May-Benson, Dr. Marty Teicher, Tina Champagne and Deborah Rozelle.

For more information on the video or events please contact the Spiral Foundation at (617) 923-4410, ext 102.

Becoming OT Innovators

By Jane Koomar, PhD, OTR/L, FAOTA, President of the Board of the Spiral Foundation

One of my greatest joys is teaching, but over time clinical work and research increased to the point where I had less time to mentor students. Fortunately, this past year I was invited to join the Boston School of Occupational Therapy at Tufts University as their Professor of Practice. The appointment has been personally rewarding because I have had the opportunity to work with outstanding faculty as well as with truly excellent and dedicated future OT practitioners. Professionally it was an opportunity to share with the students some of the great work we have going on at the Spiral Foundation and our sister clinic, OTA-Watertown.

The group’s enthusiasm was especially evident when we visited the clinic for a hands-on lab. The wide variety of equipment—especially suspended equipment—is something OTA prides itself on. Seeing my students try some of the equipment themselves, reminded me of the importance of continued training and education for all OT practitioners, wherever they may be in their careers. Getting back into the classroom on a regular basis in 2010 also reminded me that teaching is often the best way to learn, and I learned a great deal from my students. To this end, the Spiral Foundation and OTA are planning to resume our intensive practical trainings for OT practitioners

When we have students or practitioners in our clinic, I like to share with them the Sensory Challenge Protocol Lab, designed by Dr. Lucy Jane Miller of the SPD Foundation. In it a subject—either a child or adult—is presented with a series of sensory experiences while we monitor his or her heart rate and skin conductance response. This unique space has been used in my own research through the Spiral Foundation, and by Dr. Roseann Schaaf at Thomas Jefferson University in Philadelphia.

The clinic and the lab represent two important aspects of our work: the clinic at OTA-Watertown is already well recognized as a place where children and adults with sensory processing challenges can find caring, dedicated and skilled therapists to help them make sense of their senses.

Spiral, while less known, is no less important. Research Director Dr. Teresa May-Benson, statistician Alison Teasdale and I are engaged in numerous research and educational projects to help push the boundaries of treatment for SPD. Our work, combined with that of research colleagues from around the world, is put into practice at the clinic.

The convergence of research and clinical practice is the truly unique aspect of the relationship between OTA-Watertown and the Spiral Foundation. My hope for my students at Tufts, as well as for others who train with us, is that they take away from their visit what we strive for every day in the clinic and the foundation: the enthusiasm for developing the creativity and dedication involved in becoming an OT innovator.

Our Senses Take No Holidays: Three Steps For Simplifying Holidays With Your Sensory Child

By Matthew Bauer, Executive Director of the Spiral Foundation at OTA Watertown

Being the parent of a child with special sensory needs, I found the holidays could be particularly challenging. A time that I looked forward to sharing family traditions with my son became a source of worry instead: would he act up? Would other family members understand what was going on with him? Is his meltdown going to be my only lasting memory of this holiday season?

To help you answer these questions, here are three tips for preparing yourself for the holidays. I’ve found these helpful for myself, my family and, most of all, my son when we’re planning for big family gatherings or other special events.

Gear Up To Answer Your Child’s Needs
It’s a simplistic statement, but in truth a complex concept: knowing what types of sensory inputs your child needs to remain balanced will help you plan. My boy craves lots of proprioceptive input (which helps him feel himself in his body) as well as vestibular input (his sense of his whole body in gravity).  But he avoids novel smells, new foods and certain types of visual stimuli. As a result, when we pack the car to travel to my family’s Christmas celebration, we bring along toys and games anyone can play with him: a mini-parachute, weighted blanket, astronaut spinning board, as well as small stuff that he finds calming and centering, like favorite videos, books or toys.

We found it’s also great to have a small space set aside where he can go to have a break. It’s easy to forget just how overwhelming the holidays can be, and for someone who already has difficulty discriminating sensory stimuli, the combination of music, lights, food smells, hugging, crowds, and loud voices can be overwhelming and may trigger behavioral responses.

Set Expectations For Yourself
Family traditions don’t always leave a lot of room for flexibility. In my own house growing up, Dad made a special soup that was served at every Christmas dinner since he was a little boy, and not eating some of his soup could be a cause of embarrassment or shame. I found taste and smell and even the sound of the soup hitting the bowl to be disgusting—my senses of taste, smell and hearing are all extremely sensitive—but would choke it down for the sake of being a good sport.

Today I couldn’t imagine forcing my son to eat something he didn’t want for the sake of tradition, but kids don’t always feel capable of making such choices for themselves. So I recommend picking one or two elements of the holiday that you would like your child to participate in: Maybe opening presents and a family meal are the two biggest events of the season. Perhaps a long walk outside and baking cookies are the memories you’d like to have of your child from the season. Whatever those things are, help prepare your child for participating in those activities with a visit to a snowy playground for some intense swinging before the neighborhood holiday party, a quiet break reading a book before opening gifts, or laying under a weighted blanket for a while before dinner. Whatever it takes to prime your child’s sensory pump–even if it seems strange or extreme to you–will help ensure that the special event will be enjoyable for everyone.

Think Long Term
Just as there are no quick fixes to helping a child with sensory issues get into balance, there is no quick fix to getting a sensory kid to engage in the overwhelming whirl of the holidays. So work with your child to take small steps each year. After a successful holiday think about some options to add for the coming year’s holiday season and plan accordingly. If you can talk with your child, ask him or her what else looked like fun, or what he or she would like to try the next year. If things didn’t go so well, discuss what might be a better activity, or how you can prepare better next year. With some forethought and preparation your child may even try Grandpa’s yucky soup next year.

Happy holidays from the Spiral Foundation at OTA-Watertown!

For more stories, info, resources, facts and tips, go to www.thespiralfoundation.org