CHASING UNICORNS
Because every child deserves a great start
RESOURCES
Disclaimer :
Barbara Coven-Ellis is not endorsing these products or speakers over others available, nor is she receiving financial or non-financial incomes, from any of these alphabetically listed resources. Barbara is simply sharing some of the many tools from her professional toolbox as they each positively shaped her evidence-based practice.
Professional Resources
The Bristol Stool Chart – Pediatric version
If you haven’t seen this, you need to google it, now. If you’ve seen it but don’t have a laminated copy along with the rest of your feeding evaluation kit, take the time to do so. Having a visual chart to refer parents to can make a world of difference when assessing a child’s overall intake/output.
Cari Ebert, EI and CAS expert, has put together an absolutely fabulous package with The Learning to Learn Program. If you’re a newer clinician or are new to EI, or just plain old feel like you really aren’t as organized with goal writing, session planning, HEP development and family education as you'd like to be, THIS is the book for you.
Chasing the Swallow: Truth, Science, and Hope for Pediatric Feeding and Swallowing Disorders
This book is an absolute must for anyone who treats children with feeding & swallowing disorders. Michelle Dawson, the vivacious and gifted host of the podcast “First Bite”, has written a book that is the absolute guiding light for SLP’s and others in the pediatric feeding community, on how to develop the clinical thinking essential to an appropriate and complete evaluation of our special little patients, and then how to put together the multidisciplinary care team so essential for the successful treatment of the whole child.
Feeding FUNdamentals Erin Ross developed the SOFFI (Supporting Oral Feeding in Fragile infants) method that is being used in NICU’s worldwide. The course fundamentally changed my feeding methods for the NICU and infant population for the better, and is an essential for anyone who is working with neonates, infants, and their families.
Established in 2006, Feeding Matters is the first organization in the world uniting the concerns of families with the field’s leading advocates, experts, and allied healthcare professionals to improve the system of care for pediatric feeding disorder through advocacy, education, support, and research. If you are involved in the treatment of children with PFD, I highly recommend that you spend time on their website, learn about their educational programs and advocacy, attend their annual conference (now virtual) and if you have the time, volunteer with them.
The First Bite podcast is an absolute DO NOT MISS when it comes to learning about IPP and all that goes into working with medically complex children with PFD as well as the nitty gritty of what it means to work with this population within the EI setting. Michelle is as human and approachable as a person can be and her love for what she does and the families she serves shines right through the speaker and into the listeners heart! Listen and learn for free or buy a subscription to SpeechtherapyPD and get ASHA CEU’s.
Get Permission Institute Marsha Dunn Klein, the founder of the Get Permission Institute is the originator of the concept of responsive feeding. Pre-Feeding Skills: A Comprehensive Resource for Mealtime Development written with Suzanne Evans Morris, was initially published in 1987 and continues to be central to OM teaching curriculums. Best of all, Marsha is an amazing, passionate and generous human and if you ever have the opportunity to take one of her courses and meet her in person, do it!
GUT: The Inside Story of Our Body’s Most Underrated Organ
Feeding professional Nerd Alert!! I loved listening to this book so much as an audio book that I went out and purchased the hard copy so that I could scribble in the margins and dog-ear the pages! Yes, there’s lots of extra “stuff” here, but if you want a better understanding of just how complex our GI tract is, from lips to anus, this is your book! Narrated in a way that is not the least bit textbook, it is not only fascinating but will make you start looking at your kids, and probably yourself, in an entirely different way.
Guts: a graphic novel by Raina Telgemeier
For clinicians, patients, and parents alike this is a fabulous look into how food aversions can develop for children. Author Raina Telgemeier shares a true story of how a bout of food poisoning and the flu resulted in an avalanche of food anxiety and a collapse of one child’s previously wide ranging food choices. This book can help build understanding in parents and those treating PFD as well as opening a door for dialogue between kids and adults. An excellent read!
Do you work with kids who use echolalia and/or scripting? Do you understand how to mold those utterances into spontaneous, contextual speech? Have you heard about Gestalt Language Processing? The team at Meaningful Speech has put together an entire training program, free handouts for parents, and excellent resources for anyone working with GLP kids! If you work with kids on the spectrum, this course should be an essential part of your toolbox!
Melanie Potock is my absolute “go to” recommendation when talking to my families! Mel is known internationally for her work in pediatric feeding and her blog and IG posts offer wonderful, evidenced based information in perfect bite-sized pieces. Plus, her warmth and passion for what she does and the families she works with, comes through in each and every video. Her books are excellent resources for families AND professionals, and she has lots of courses available, both on demand and live, that are unique to her and her interdisciplinary approach, and include Master Classes for the advanced learner.
Nobody Ever Told Me (or My Mother) That!: Everything from Bottles and Breathing to Healthy Speech Development
Diane Bahr’s book, Nobody Ever Told Me (or My Mother) That!, is an essential guide to building an understanding of typical development and is a wonderful tool for the newer clinician or those seeking to get down to the very specific details of how the oral mechanism develops for speech and eating. Diane is a wealth of information and is extremely generous in her willingness to teach other feeding practitioners.
Family resources, including local resources
APFED American Partnership for Eosinophilic Disorders Ever heard of EoE? If you have then you probably know someone (perhaps you?) who struggles with eating and drinking as a result of eosinophilic esophagitis. Apfed offers patients, families, and providers access to education, advocacy, and support. While you may have heard that EoE is a “rare” disorder, I have treated many children with this condition, and I would say that among those with pediatric feeding disorders, it is not truly “rare”. With patient and caregiver support services, this is an excellent resource for anyone involved with this complex condition.
Feeding Tube Awareness was founded in 2010 to support parents of children who are tube-fed, while raising positive awareness of tube feeding as a lifesaving medical intervention. Tube feeding is often misunderstood, and parents can face negativity as a consequence. Hundreds of thousands of infants and children are able to live, grow, and thrive because of tube feeding. Check out their website for education and support
https://www.feedingmatters.org/ Established in 2006, Feeding Matters is the first organization in the world uniting the concerns of families with the field’s leading advocates, experts, and allied healthcare professionals to improve the system of care for pediatric feeding disorder through advocacy, education, support, and research. I cannot say enough about this wonderful organization and the support and education they provide for both parents of and providers to the PFD community. Their “Power of Two” parent mentor program matches families that are struggling with PFD with qualified family coaches who have first-hand experience with PFD. It is a one-of-a-kind program and the families I know who have participated in it, have had nothing but praise for the help and support they have received.
Help & hope for children with digestive disorders. GIKids provides children and families with resources and easy-to-understand information on the diagnosis and management of pediatric digestive disorders
LPL Consultation, LLC 540-907-0583. Lucia Lara is an extraordinarily skilled OT in private practice on the Kitsap Peninsula. Her areas of focus include: Sensory wellness in health and development, individualized sensory solutions, sensory compatible spaces at home or work, Therapeutic Listening, Irlen screening, handwriting remediation, sensory based approach to Misophonia
Little Fern Forest in Indianola offers Outdoor OT, a forest school, and sensory consulting for the pediatric population. Emily Bryce and her husband have developed a gorgeous piece of old forest into a marvelous sensory playground for kids.
https://soundspeechlanguage.com/ Is the website of Kitsap Peninsula’s own Cheryl Thompson, MS, CCC-SLP. Cheryl has extensive training and experience working with a wide variety of children with autism spectrum disorders, behavioral challenges, and other speech and language issues. Her ability to connect with children that others have struggled with is truly a gift, and I highly recommend her for this population.
https://teachmetotalk.com/ Laura Mize is a pediatric speech-language pathologist who specializes in treating young children, ages birth to three, with communication delays and disorders. Her website offers a ton of resources for parents and professionals, and her YouTube videos are an excellent way to jump start therapy or as a way to learn more about the kinds of things parents can do at home. Not a substitute for in-person therapy, but a great way for families to learn more about how to support their little one’s communication.
The Zebra Clinic (425) 218-4104. Clinic founder Margaret Royce is a pediatric PT with years of experience working with birth to teenage kids. She is an amazingly gifted and compassionate clinician to whom I would recommend any of my pediatric patients and families, without reservation. She especially enjoys working with the infant population and with children with connective tissue disorders. Margaret practices on the Kitsap Peninsula and in surrounding communities within the patient’s own home.