Quick Resources for Infant Feeding and Oral Motor Concerns: Down syndrome, Cerebral Palsy, High Tone/ Low Tone Concerns, or Tube Feedings
Contributed by Capital Area Speech Therapy Staff Speech Language Pathologist:
Dee Arp, MA.,CCC/SLP
The big day is here and you are ready to tell the world; you have just had a sweet little baby! Then, other news arrives; the sweet little baby also has an unexpected diagnosis that might make it difficult to nurse, feed, or speak some day. It’s a lot to consider. There is the added context of having spent hours in preparation for this big day mentally and physically, not to mention the number of hours spent in delivery. Next thing you know, there are countless appointments lining up with medical specialist after specialist. Did you ever feel like tuning it all out? Understandable! Next comes information overload: What does this diagnosis mean for your baby? What does it mean for the rest of the family? Will your child be on multiple medications forever? How can you help your child reach his or her best potential? Breathe in; breathe out.
This post is here to help you find those breaths. It’s a gentle guide for you to some helpful, internet-available resources. Explore them at your own pace. The hope is that the gathering of resources here will minimize your work in searching. These sites are full of articles and treatment considerations as your little one develops early pre-feeding and feeding skills. These materials range in topic from the “stages of typical development versus disordered feeding/ oral-motor development” to “reasons why parent training with a speech-language pathologist is important for a baby having Down syndrome”. Our therapists seek to help you be able to help your child. We want you all to gain a strong, fighting chance toward realistic progress at home, as well as within therapy by increasing understanding. We encourage high value placed upon early intervention and prevention of further complications.
One book resource is extremely helpful and worthy of first mention. It provides parents (and professionals) with numerous checklists and orderly charts describing some of the various functional issues at hand. It is a great guide through those earliest stages of feeding and oral-motor concerns. It may even be a wonderful resource for your Pediatrician or Family Doctor as you enter this unexpected journey. The book is titled, Nobody Ever Told Me (or my Mother) That! The author is Diane Bahr, a speech-language pathologist.
Here are some favorite internet resources that offer multiple recommended readings for a rich variety of topics related to infants having oral-motor and/or feeding concerns listed alphabetically:
- Debra Beckman is a speech-language pathologist that instructs in the area of specific oral-motor interventions and has developed a specific assessment in this area. Articles cover a variety of topics including: cheek patterns, drooling, jaw & lip patterns, tooth grinding, and tooth patterns
- Marsha Dunn Klein is a certified occupational therapist with the company, Meal Time Solutions. The articles include explanations of why its important to manage some of the sensory aspects of feeding as well as new ways to present food items to assist in these issues.
- Suzanne Evans Morris is a certified speech-language pathologist. She and Marsha have written several helpful books together within this topic. She is a part of a company called New Visions
- Sarah Rosenfeld-Johnson and Lori Overland are also two influential, certified speech-language pathologists in the areas of pre-feeding and feeding development. Lori actually offers a course geared toward Pre-Feeding skills in young children with Down syndrome. http://www.talktools.com/resources/
- Kay Toomey is a pediatric psychologist specializing in feeding disorders. There are several handouts included here to help determine when feeding difficulties may be out of the normal category. Items such as, “Red Flags for Feeding Disorders”, and another one distinguishing between “Picky Eaters vs. Problem Feeders” can be found here.
Thank you for your time and interest. Remember, just as babies learn to sit up before they stand, parents also go the processes of learning what is best for their children. Take your time along the way and enjoy the process.