Food Chaining with Cheri Fraker and Laura Walbert (and Friends): Estate Planning for Children with Special Needs

Tuesday, December 13, 2011

Estate Planning for Children with Special Needs

http://www.cincinnatichildrens.org/patients/child/special-needs/transition/estate/.
Great website with good resources for our kids. Check it out!

1 comments:

Dylanarman said...: This is a very good Estate Planning for Children with Special Needs. Its a very important for the children.

Association Management; December 26, 2011 4:36 AM

Note: Read Prior to Using Any Information on This Blog

Contents of this blog are sole property of Cheri Fraker and Laura Walbert. All Food Chaining and PreChaining programs, lectures and materials are copyright protected. The information on this web page is provided for educational purposes. You understand and agree that this information is not intended to be, and should not be used as, a substitute for medical treatment by a health care professional. You agree that Preemietalk is not making a diagnosis of your condition or a recommendation about the course of treatment for your particular circumstances through the use of this web page. You agree to be solely responsible for your use of this web page and the information contained on this page. Preemietalk shall not be liable for any damages you may suffer or cause through your use of this page even if advised of the possibility of such damages.

Welcome Bloggers...Start Here

Hi
Welcome to our Food Chaining Blog, from Cheri and Laura and Friends...Check out this blog for therapy tips, articles, products, stories from some of our patient families, education materials, courses and information about feeding therapy programs for infants and children. Check out the Blog Archive for past posts that might be of interest. There are many links including one below to view videoropharyngeal swallow studies.
Go to the Archives too, there are many past posts with information, treatment suggestions, research articles and discussions. Thank you for visiting our blog site.

Cheri Fraker, CCC/SLP, CLC Speech Pathologist and Feeding Specialist, Certified Lactation Consultant
Laura Walbert, CCC/SLP, CLC Speech Pathologist and Feeding Specialist, Certified Lactation Consultant

Our Friends:
Sibyl Cox, RD, LD, CLC, Pediatric Dietitian
Shannon Cole Barker, OTR/L, Occupational Therapist
Stacey Vitale, CCC/SLP
Parents: Alicia, Jessica and Stephanie

Please note that all Preemietalk, ANEW and Pre/Food Chaining information is copyright protected.

Disclaimer

This blog may contain suggestions for evaluation and treatment of infants and children with pediatric feeding disorders. Please note that general treatment suggestions
cannot take the place of a complete and thorough assessment (including modified barium swallow study or fiberoptic evaluation of the swallow) to determine safety of oral intake. Treatment of feeding disorders is recommended through a pediatric speech pathologist/oral feeding specialist and medical and/or pediatric feeding team. The primary
care physician should be contacted before changing any part of the current treatment program.

Preemietalk is not liable for suggestions contained in this blog.

Food Chaining: Recent Presentations, Publications and Media

Food Chaining book (see below)
World Congress of Pediatric Gastroenterology, Hepatology and Nutrition
58th and 59th American Academy of Cerebral Palsy and Developmental Medicine
North American Society of Pediatric Gastroenterology, Hepatology and Nutrition
American Speech Language and Hearing Association
Wall Street Journal
Chicago Tribune
Parents Magazine
Fox News Chicago Morning Show
Nutrition and the MD
Journal of Pediatric Gastroenterology, Hepatology and Nutrition
The Nest-International Periodical for MD/RD
Nutrition in Clinical Practice

The Center for Selective Eating and Pediatric Feeding Disorders

Koke Mill Medical Center

3132 Old Jacksonville Road

Springfield, Illinois 62704

Clinic: Mondays and Tuesdays 9-12

Phone: 217.862.0400 or 217.862.0403

Fax: 217.862.0440

Physician order required for evaluation

Pediatric Feeding Team Clinic

Cheri Fraker, CCC/SLP, CLC, Speech Therapist/Clinic Feeding Specialist

Laura Walbert, CCC/SLP, CLC, Speech Therapist/Feeding Specialist

Sibyl Cox, RD, LD, CLC, pediatric dietitian

Cheryl Swenny, psychologist

Gretchen Conway, MOT, OTR/L, occupational therapist

Michelle McCombs, Clinic Coordinator

What is in the Food Chaining book?

I was recently interviewed on the radio about the Food Chaining book and I was asked what was in the book. So I thought it might be helpful to post that here. The book was written by our feeding team including a pediatric gastroenterologist, pediatric dietitian, occupational therapist and Laura and I. We wrote it because we were contacted by many families who did not have access to a pediatric feeding team. We thought it would be a helpful guide to families to work with their primary care physician and local therapists. We decided to write it in a manner that it could be used by parents and therapists/medical professionals. The first 5 chapters of the book help a parent or a therapist determine if there are underlying medical issues, nutrition problems, sensory problems, behavioral issues or swallowing/oral motor problems that contribute to the child's feeding disorder. The parent or therapist is provided with a multitude of intervention and treatment ideas. Multiple case studies are used to make the content very reader friendly.
The book then addresses how to use the techniques of food chaining. Food Chaining is basically about analyzing what a child eats successfully and re-creating offering food in a manner that matches the child's preferences. New foods are offered in a slightly different taste and texture in a progression to expand the child's ability to tolerate more variety in the diet. The book focuses heavily on teaching a child about food. There are additional chapters on special topics of prematurity, autistic spectrum disorder and Down Syndrome. Pre-Chaining programs are also explained. Pre-Chaining emphasizes precautionary care the first year of life to try to prevent feeding problems before they occur or lessen the severity of a feeding disorder. Hope this helps!

What is in the NICU to Childhood Book?

This book is geared toward therapist's and includes valuable strategies to outline exactly what to do with children who aspirate, have feeding aversion and refusals, behavioural feeding problems and digestive disorders, and how to effectively manage children with cerebral palsy, tracheostomy tubes, autism, cancer, cleft lip and palate, Gastroesophageal Reflux Disease (GER), and failure to thrive.

The text covers the entire spectrum of how to meet the needs of infants with varied appetites, formulas, and provides step-by-step methods to improve bottle, breast, cup, spoon, and self-feeding skills. Treatment is covered from NICU to childhood-adolescent years. It also includes a bonus medical based feeding intake and referral guide, nipple comparison charts, evaluation forms as well as photographs of positioning techniques, use of equipment, and much more.

Our Favorite Pediatric GI...Food Chaining Co-Author Mark Fishbein, MD

Dr Fishbein is a co-author of the Food Chaining book. He has mentored Laura and I and we had the gift of working with him for nine years in feeding clinic before he returned to Chicago in May 2006. He also diagnosed my son with Cyclic Vomiting Syndrome and saved my family. There are many great GI's out there, but he is our favorite!! We are still working with him via telemed and research projects.

Mark Fishbein MD
Associate Professor of Pediatrics
Northwestern University's Feinberg School of Medicine
Division of Gastroenterology, Hepatology, and Nutrition
Attending Physician, Children's Memorial Hospital
1.800.KIDS DOC (1.800.543.7362)

# Ounces Liquids Per Day- Guidelines for Infants

We recommend...The Pediatric Dysphagia Newsletter

The Pediatric Dysphagia and Feeding Newsletter
Krisi Brackett MS SLP/CCC has focused her career in Speech Pathology in the specialty area of Pediatric Feeding and Dysphagia Services, and currently practices feeding intervention in private practice. Krisi founded and publishes The Pediatric Feeding and Dysphagia Newsletter, an international quarterly publication on pediatric feeding issues. Krisi lectures nationally, about her work sharing practical tips for handling this special population of speech patients.

What is "Oral Aversion?"

Oral aversion is described as a consistently observed negative response (grimace, avoidance behaviors) with sensory input to the peri-oral and/or intra-oral region. Oral aversion may be a related to a variety of medical conditions, such as gastroesophageal reflux, aspiration, prematurity, intraventricular hemorrhage (IVH), periventricular leukomalacia (PVL), etc., as well as from negative oral experiences such as nasogastic (NG) or orogastric (OG) feedings or from long term intubation.

Aversion may be evident at birth and may impact breast/bottle feeding, spoon-feeding and the transition to table foods. However, oral aversion is distinct from feeding aversion and behaviors can go beyond the feeding experience. A child with an oral aversion may be aversive to oral care, avoid contact to the mouth with hands and toys and therefore may not experience normal developmental mouthing activities. The child may also present with motor deficits and may be physically unable to bring hands/objects to mouth. Caregiving practices and parenting style may also contribute to oral aversion. The parent may discourage mouthing of toys/objects and insist on feeding the child beyond the appropriate developmental stages to control the feedings due to concerns regarding safety of oral nutrition or to avoid messy mealtime experiences.

An oral aversion may also be part of a more global presentation of a sensory processing disorder. Oral aversion can manifest itself in a variety of presentations including hypo-reactive and hyper-reactive responses sensory input. Treatment should focus on a whole body approach providing pleasurable age appropriate child directed oral motor experiences. The therapist should work progressively toward the mouth as tolerated. Analysis of the food items accepted by the child may reveal that only particular types or textures of food are tolerated. Treatment focuses on expanding flavor prior to texture and providing variety in the diet as tolerated. The child may present with a very restricted food repertoire and nutrition can also be significantly impacted.

Websites for Food Education

Websites For Learning About Food and Cooking Fun:

www.familyfun.com

www.mealappeal.com

www.spatulatta.com

www.nutritionexploration.org

www.kidshealth.org

www.kidnetic.org/kids

www.kidscook.com

www.dole5aday.org

http://www.scholastic.com/schoolage/activities/k-2/kitchensci.htm

http://personal.cfw.com/rollinso/SciFood.html

http://chemistry.about.com/od/homeexperiments/

http://www.chatham.edu/pti/Kitchen-Chem/Bcleveland-01.htm

http://www.foodscience.psu.edu/outreach/fun-food-science.html

http://www.clubmom.com/display/245307

http://homeschooling.gomilpitas.com/explore/chemistry.htm

http://homeschooling.gomilpitas.com/explore/chemistryfood.htm

Cosmeo (subscription)
www.cosmeo.com

Kidssoup (subscription but cheap)
www.kidssoup.com

Enchanted Learning (subscription but cheap)
www.enchantedlearning.com

www.kidsgardening.com
(eating rainbow specifically this page...)
http://www.kidsgardening.com/2005.kids.garden.news/june/pg2.html

more eating rainbow

http://www.nutrition.ecsd.net/eat%20a%20rainbow.htm

Educating about agriculture
http://www.ageducate.org/activities/
with resources for teachers (but can be modified by parents and therapists)
http://www.ageducate.org/resources/

Food for Thought from University of Illinois Extension
http://www.urbanext.uiuc.edu/foodforthought/

more from U of I extension on nutrition and health
http://www.urbanext.uiuc.edu/nutrition/index.html

Neat Solutions for Healthy Children
(books and items to buy with food, agricultural themes)
http://www.neatsolutions.com/Healthy%20Food%20Choices/Farm.htm
Home page for Neat Solutions (coooking ideas, curriculum, resources)
http://www.neatsolutions.com/index.htm

Illinois Agriculture in the Classroom
(everything can be modified to use at home or in therapy!)
http://www.agintheclassroom.org/060605/aitchome.html

BAM! Body and Mind (from CDC)
http://www.bam.gov/sub_foodnutrition/index.html

FSA Kids
http://content.fsa.usda.gov/fsakids/default.htm

Small Step Kids
http://www.smallstep.gov/kids/html/index.html

American Egg Board
http://www.aeb.org/KidsAndFamily/

Learn To Be Healthy.org
http://www.learntobehealthy.org/kids/

MouthPower.org
http://www.mouthpower.org/mouthpower.cfm

Cooking with Children (British website!)
http://www.bbc.co.uk/food/recipes/mostof_cookingwithchildren1.shtml

Brainpop (some free videos but others are subscription!)
http://www.brainpop.com/health/seeall/

Eat Smart Play Hard
http://www.brainpop.com/health/seeall/

About Produce
www.Aboutproduce.com (not working lately??)

Indian Services
many aspects to website including a nutrition section--talks about foods available on reservations under funding programs, tips for nutritional and health presentations for those of the Native American Culture, dietitians working with Native American families, recipes, etc...
http://www.ihs.gov/index.asp
http://www.ihs.gov/MedicalPrograms/Nutrition/
http://www.ihs.gov/misc/links_gateway/sub_categories.cfm?sub_cat_id=0806

Food Chaining with Cheri Fraker and Laura Walbert (and Friends)

Tuesday, December 13, 2011

Estate Planning for Children with Special Needs

1 comments:

Copyright Notice

Note: Read Prior to Using Any Information on This Blog

Rate THIS reaction! Kids can say no without SAYING no!

"No" became a resounding "Yes"

Welcome Bloggers...Start Here

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About Us

I have been asked to be a Wellsphere Blogger

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Cheri and Laura traveling the globe!

Hello Visitors

Tracker

Alicia Hart "A Parent's Perspective of Food Chaining" (Pause my music player before playing)

Dinner Tool: Check this out!

Seafood or Chicken?

Facebook Food Chaining Fan Page

Proloquo2Go application for iPad or iPod Touch-pause the music on my blog before playing video

More on Proloquo2Go using the iPad or iPod Touch

Constipation in Infants and Children American Academy of Pediatrics

Watch This Video: Kids Struggle to Recognize Fruits and Vegetables

Inhaled Steroids Can Impact Vocal Cords

Brian Deer Article on Vaccines and Autism Wakefield Research Controversy

Preemietalk Facebook Fan Page-Videos of Therapy Sessions

Food Chaining: Recent Presentations, Publications and Media

Blog Archive

Memorial Medical Center: A Great Place to Work

The Center for Selective Eating and Pediatric Feeding Disorders

We also work at (in our spare time) The Center for Selective Eating and Pediatric Feeding Disorders

Interview with Cheri-Article in Effingham Daily News on Picky Eating

ANEW Way Images

Preemietalk is Cheri and Laura and ANEW is Cheri, Laura, Sibyl, Alicia and Stacey Business #2

The ANEW Girls...ANEW Way Images

Cheri and Laura's Fall 2009-Spring 2010 Courses

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Cheri's writings are also on Preemietalk Fan Page on Facebook

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Mealtime Notions: Marsha Dunn Klein

To Find a Speech Therapist

To Find a Registered Dietitian

To Find an Occupational Therapist

Our Book...subtitle is wrong in the picture, but this is the only one I could copy into the blog

Food Chaining Book

What is in the Food Chaining book?

Book Review for Food Chaining -St Louis Post Dispatch

Cube Pit at BDI

I love the swing!

Dateline Autism and Vaccines Debate

Cheri-My Son Luke's battle with Cyclic Vomiting Syndrome

When a Child Aspirates...Dealing with Silent Aspiration

Having Fun with Food

Giggles

Parents Guide Magazine Article on Food Chaining

iPhone and iPod Touch

Evaluation and Treatment of Pediatric Feeding Disorders from NICU to Childhood

NICU to Childhood Book

What is in the NICU to Childhood Book?

Pre-Chaining

Products We Like: Nuby Cup

One Step Ahead Chair

Beyond Play Lil Spiller cup! I love this with nectar liquids!

Stokke Tripp Trapp Chair

Dr. Brown Bottles

Therapeutic Tastes: Bionix Bottle

Tummy Tunnels

Children's Medical Ventures Website

Rate A Plate...Learn about Nutrition of Your Food Choices

Rate a Plate

Cultural Food Pyramids

99 Balloons Eliot's Story...Beautiful, please watch...

Cheers!

Laura and I visited Cheers in Boston

Our Favorite Pediatric GI...Food Chaining Co-Author Mark Fishbein, MD

Cincinnati Children's Hospital Special Needs Resource Directory

A Wonderful Therapist in Mattoon, Illinois