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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Vayu vest, a Spiral partner, garners attention from medical device industry – good sign for sensory products

About three years ago, we were approached by a young engineer, Brian Mullen, who was working to create a deep pressure vest for adults with mental health concerns. Impressed by his work, we partnered with Mullen and his business partner Chris Leidel so they could access our research resources to develop and promote their Vayu vest as an FDA registered medical device.

“There is currently a large market for products that help with sensory-based interventions, such as weighted blankets and vests, massagers, sound therapy programs, etc.  However, at this time, most are not considered medical devices in the eyes of the FDA,” explained Brian and Chris.

Though numerous individuals have sought to develop weighted or pressure vests that can be mass produced and still meet the needs of those with sensory processing problems,  Therapeutic Systems, Mullen and Leidel’s company, set out to produce an evidence-based, insurance-reimbursable medical device.

“While many of these [sensory-based products on the market] are useful, moving sensory tools into the realm of medical devices could be advantageous by allowing for the development of higher quality technology solutions, facilitating increased clinical research, and ultimately resulting in insurance reimbursement. This could increase access of innovative and effective new products to many different populations,” they said.

A primary goal of the company has always been to not only develop a great product, but to validate that product through research. Over the summer, the Vayu vest was launched as a Class 1 FDA medical device and Therapeutic Systems is currently planning clinical trials to establish its effectiveness as a therapeutic deep pressure product. Though their current focus has been providing the Vayu vest to children with autism, they are also exploring other deep pressure applications such as PTSD and trauma informed care.

If Vayu succeeds in becoming an FDA registered medical device that is insurance reimbursed, it may pave the way for other sensory-based interventions to also gain this recognition. 

Recently, the Vayu deep pressure device garnered some exciting attention from the medical device industry. A prominent medical device industry journal, MD+DI, ran a profile of Therapeutic Systems. This kind of press is a great sign for sensory interventions; it shows the traditional medical device industry is interested in products that address sensory needs. 

We were thrilled to work with Therapeutic Systems, and the company was actually one of our first research affiliates – one of the ways the SPIRAL Foundation promotes research in sensory integration and Sensory Processing Disorder is through our Research Affiliates Program.  This program facilitates individuals and organizations’ ability to develop, conduct and publish research related to sensory integration. 

Both Dr. Jane Koomar and Dr. Teresa May-Benson of SPIRAL serve as scientific advisors for Therapeutic Systems and are mentioned in the MD+DI article. Check out the article and we hope you follow Therapeutic Systems and the Vayu vest!

What’s the relationship between DCD and dyspraxia?

Many are understandably unsure of the relationship between Developmental Coordination Disorder (DCD) and dyspraxia. Though I’ll try to clear the issue here, I admit, it’s complicated.

First, the definition of “dyspraxia” is not always very clear and its current usage is not exactly synonymous with conceptualizations of praxis in general. I actually try to avoid the term dyspraxia altogether these days because it is not a terribly useful term due to its lack of clear definition. I prefer the term “praxis deficits,” which is more accurate. Praxis deficits may include problems with ideation or motor organization issues of motor planning, bilateral coordination, sequencing, or projected action sequences – all of which are aspects of praxis. Dyspraxia tends to refer only to motor planning problems and depending on the profession, can be even more restrictively defined as only problems with imitation of gestures. This is far more restrictive than our current understanding of praxis in general which can include problems with tactile-based motor planning, vestibular/prop-based bilateral coordination and sequencing problems, and ideational deficits.

The term was originally developed to try to standardize identification of motor performance problems (including praxis issues) in children so there was some uniform terminology and assessment for researchers. DCD was eventually included in the DSM as diagnosis. As a diagnosis, DCD is used very broadly and is usually perceived as an umbrella term that encompasses praxis deficits. The problem with the research and the hard core DCD people is that the gold standard assessment of DCD is the Movement ABC which, from a sensory standpoint, only taps into vestibular issues and does not address tactile-based motor planning. So, the majority of children identified in the DCD literature, if they only use the M-ABC, will be those with bilateral coordination and sequencing problems and not those with tactile-based motor planning. The hard core DCD people tend to make a distinction between “motor coordination” problems (which they usually identify as issues of balance, running, ball skills, etc. – what we identify as bilateral coordination and sequencing and projected action problems) and “motor planning” or “dyspraxia” problems (which they identify as problems of imitation of gestures).

So long answer to the question – the answer is not clear. DCD is generally perceived by OTs as a larger umbrella diagnosis with praxis deficits such as motor planning problems (dyspraxia) falling under the umbrella. However, your hardcore DCD people, including many in Canada and the UK, can be quite adamant that they are different issues. The DCD research literature will capture problems with praxis but they will largely focus on children with more vestibular/ bilateral coordination/ sequencing problems; though you have to read carefully as an OT will use the DCD term but may make a point of capturing kids with tactilebased issues as well.

There is amazingly little research specifically on praxis and even less recent research. Most current articles are in relation to imitation skills in children with autism. I think it is most important to realize DCD research will reflect mostly skill-based vestibular activity and, unless done by an OT, will not reflect specific problems in tactile-based motor planning.

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

 

 

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