Parents often feel alone, and just knowing there are other people who have had similar experiences can be helpful. Here are some resources for parental support and information.
Feeding Matters is a parent-professional organization and they’ve developed a feeding questionnaire designed to offer some guidance to both you and your physician about typical eating behaviors. We know that eating enough is not enough! Mealtimes should be enjoyable and comfortable. This questionnaire was developed by experts in the field of pediatric feeding disorders (including Dr. Ross). After you complete the questionnaire, you will get a print-out that you can email to your physician. It will highlight areas that might need more investigation. See the Questionnaire at Feeding Matters While you are there, explore their other resources for families. It’s a wealth of information.
Over 12 percent of kids ages 6-19 already have some level of hearing damage from loud noises, so the team at Everyday Health created the Hearing Health Guide for Parents and Kids which covers:
- Understanding sound, how our ears work, and types of hearing loss
- The different causes of childhood hearing loss
- Tips on protecting your child’s hearing and getting them tested
The Birth Injury Center is a free resource center for families who have experienced birth injuries. This can no doubt be devastating for any parent. For this reason, Birth Injury Center is dedicated to supporting those who have been affected of any type of birth injury, ranging from HIE to shoulder dystocia, and more. If you have any questions or in need of help, please reach out to them to help.
Many children with feeding problems have underlying medical conditions. In fact, 90-97% of older children with feeding challenges either have, or had as an infant, a medical condition that is making it harder to learn to eat. One of these medical conditions is cerebral palsy (CP). While infants are not typically diagnosed with CP because it is related to delays in motor milestones that show up later in the first year, we wanted to share a resource for any family whose child has been diagnosed with CP. This resource may also be helpful for a family who is wondering about this diagnosis. The Cerebral Palsy Guidance Center is an online resource to answer questions and offer resources. https://cerebralpalsyguidance.com/cerebral-palsy/
Everyone who knows me, knows I am good friends and a co-presenter with Kay Toomey, Ph.D., for her program the SOS Approach to Feeding. Over 30 years, Dr. Toomey has refined her transdisciplinary approach to assessing and treating feeding challenges in children. The SOS Approach to Feeding is a nationally and internationally recognized clinical program for helping all children develop a healthy and enjoyable, lifelong relationship with food. Check our her website, and click here for a video introduction to this wonderful program. I like to think of SOS® and SOFFI® as a tag-team. SOS® approaches to treatment begin around the 6-month-old age range, with the transition to purees. And her treatment approaches are used with young and old children, and even adults! I am so fortunate to work with Kay in our shared goal of helping to develop good eating habits, enjoyable mealtimes for parents and children, and improve nutritional outcomes.
The Pediatric Eating and Swallowing (PEAS) website has lots of information for professionals and for parents. This was a collaborative practice effort by Alberta Health Services, in Alberta, Canada. While it was created for Alberta, the number and quality of the resources are impressive! I highly encourage everyone to check this out! As always, Alberta Health Services is sharing their expertise with us!
How can grasshoppers help parents and feeding professionals teach anxious eaters about new foods? Marsha Dunn Klein, an internationally known feeding therapist, provides the answer in this book, highlighting that most anxious eaters do not enjoy the sensations and variability of new foods. In seeking to help them, she asks what you’d need to do to help yourself try a worrisome new food, such as a grasshopper. Drawing on her own experience trying grasshoppers while learning Spanish in Mexico, she personalizes the struggle of children to find new food enjoyment, providing a goldmine of practical, proven, and compassionate strategies for parents and professionals who work with anxious eaters.
Learn how to:
- Find peace and enjoyment during mealtimes
- Find ways to help anxious eaters fearlessly try new foods
- Navigate the sensory variations in food smells, tastes, textures looks, sounds
- Help anxious eaters (and their parents) develop a more positive relationship with food
Because parents are absolutely central to mealtime success, the author incorporates parent insights throughout the book. Using encouragement, novelty, and fun, she invites everyone back to the table with a sensitive and pressure-free approach.
Based on her many years of experience as a mum to two amazing boys, and over 20 years as a Paediatric Occupational Therapist, this book was written to reassure parents, carers and families. No matter how often your friends and family may say this, if you know that your child is developing differently from their peers, it’s time to stand up for your conundrum child. When you have a child with additional needs, what’s important is not that they get top marks or play rugby for the first team: it’s that they are able to get changed quickly enough after PE or have a friend round on a stress-free playdate. Use the CAN approach to help your child Connect, Achieve and Navigate their way to independence.
This book gives you the strategies you need to:
- Connect with yourself and your child
- Ditch the parent guilt
- Help your child achieve goals and cope with new situations
- Understand how to get what you need from healthcare professionals
- Help your child develop the skills they need to enjoy life to the full
This online, non-profit was founding in 2009 by parents Jennifer and Nick, in memory of their son Graham. They deliver support, advocacy and research to improve the outcomes for preemies and their families. They offer a free all-in-one app for families with preemies as well.
Leaning into Love is a community and safe space for mothers and friends in the NICU and special needs communities.
“This community is infused with everything I wish I knew in those early NICU days and builds on what I have learned since as a parent of a child with special needs.” Julie Forge