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Center for Selective Eating and Pediatric Feeding Disorders Interview

Read more about our journey with autism and picky eating in the new book Brains, Trains & Video Games:  Living The Autism Life and is available at Amazon and Barnes and Noble!  

 

 

 

The Autism Life.com presents an interview with Cheri Fraker—SLP, Sibyl Cox—RD, and Laura Walbert—SLP about feeding disorders and problems in children and specific problems in children with an Autism Spectrum Disorder. These wonderful professionals work with my son, Ewan, and the specific feeding issues that he has.

 

You can also find out more about Food Chaining on Facebook!

Alicia: How did you become interested in children’s feeding issues? What is Preemietalk and how did it start?   

Cheri: Well, on a personal note, I think Preemietalk began with my drive to excel as a therapist. That in turn grew out my desire to learn as much as I could about feeding and digestive tract disorders after my son Luke was diagnosed with cyclic vomiting syndrome. I had to know how to help him and to be the kind of therapist I would want for him. Laura came into my life when was my student.  She was simply outstanding from day one and when she graduated, we hired her. She started working at St John’s with me and we started doing conferences together for the Illinois Speech Language and Hearing State Convention. We did these conferences several years in a row and gave our participants a huge handout of materials. Dr. Mark Fishbein was Luke’s doctor and I started working with him on the condition that he teach me something new every day. He was our mentor and the first one to tell us that we had a book instead of a handout! He also gave us the push we needed to take it to the next level. After Laura and I published our first book, our unofficial partnership became a small business, Preemietalk. Preemietalk is an educational and consulting company specializing in pediatric feeding disorders. We do consultations for families, schools, education for hospitals and professional lectures for therapists/medical professionals internationally. Laura and I have written Evaluation and Treatment of Feeding Disorders and we are currently working on our second book, Food Chaining: The Revolutionary 6-Step Program to Stop Picky Eating written with Dr. Mark Fishbein and Sibyl Cox. This new book is for parents about our program for treating feeding aversion called Food Chaining©. Sybil works at SIU and is also contracted with Preemietalk and lectures and teaches with both Laura and I.  Laura and I also have a blog at http://cheriandlaura.blogspot.com where we have more tips and thoughts about Food Chaining.

Alicia: What can a feeding clinic do for a child with a feeding disorder?

Cheri: A team can fully evaluate a child and make sure there are no underlying medical issues that are impacting the child’s desire to eat. This is a tough problem to treat. There is a great deal of trial and error involved and we may get it all wrong. We want families to communicate with us after the initial appointment so we can keep evaluating and working to come up with the best program for their child. There are no quick fixes or easy answers and our treatment plans take time to implement.

My favorite part of the feeding team clinic is having all the professionals together in the same room. We all have our individual area of expertise and we may have different takes on what could be going on with our patient. We work to try to find the heart of the feeding disorder. We all teach each other and we may fight with each other to come up with the best plan possible for the family. A truly seasoned team can argue and debate and because you trust the other person so deeply, you are also free to totally disagree. We are very upfront with families and as you know, I tell it like it is. But that is what I would want for my family, a direct and honest opinion. I love the challenge of all of this and that every day I learned something new. So I feel that the family benefits from the combination of professionals using their gifts to complete a very thorough evaluation and develop a very complex treatment program. We aren’t perfect, we see hundreds of children and keeping track of everyone is the biggest challenge, but we try our best.  

Alicia: Don’t all kids have issues with eating new foods? I mean, there’s a reason why kids and eating vegetables is so cliché. How do you know when it’s serious enough to warrant treatment?

Laura: Neophobia or fear of new food is a real fear that is noted in children, especially toddlers. Children need to be exposed to foods multiple times before they eat it and some times parents fall into the habit of not placing a previously rejected food item on the child’s plate. If a parent is short order cooking for their child, food items are dropping out of the child’s repertoire, or mealtime battles are a regular occurrence, it is time to discuss these concerns with the child’s physician so an evaluation can be completed.

Cheri: We all have some degree of feeding aversion, I certainly do, but I am way too successful of an eater believe me! Almost everyone can tell you that there is a food that gives them the heebie-jeebies… but imagine if that happened all the time. I think fruit, meats, and vegetables are acquired tastes and textures for many children. Anything that has the potential to impact your health, nutrition, and social interaction or is an extreme source of stress is an issue.

Sibyl: All kids do not have issues with eating.  Some kids never give their parents problems about what food is served during meals.  But for the parent whose child’s eating is a constant struggle, the stress during family meal times can escalate leading to short order cooking, fighting, and negative feedback for the child.  What parents often become concerned about is when their toddler refuses favorite foods and becomes completely disinterested in eating.  This often occurs in toddler hood because growth slows down significantly compared to infancy.  Continuing to offer the rejected foods is so important.  Children can not learn about food if it is not provided.  Research shows that people form their eating habits early in life.  Children are very curious during toddler years and just teaching them about their vegetables without the expectation that they MUST eat them can reduce struggles.  When children are not just avoiding vegetables, but other food groups as well; or the parent feels they are always struggling to find something for their child to eat, they should discuss this with their physician.

Alicia: Is it really a big deal if my child only eats a few foods? He or she looks pretty healthy so why make a big deal about it?

Sibyl: Yes.  Lack of variety in diets can not only impact the child at the present time but can lead to health problems later in life.  Children who are more open to trying new foods often form more healthy lifelong eating habits.  Just because a child is growing normally does not necessarily mean their diets are providing adequate amounts of many vitamins and minerals.  By eating a variety of foods, parents can be more assured that the child is getting adequate nutrition.  For example, fruits and vegetables are often high in vitamins A and C, but low in iron, whereas meat and some fortified grains are high in iron.  When children avoid whole food groups, they risk becoming deficient in several vitamins and minerals.  A supplement can correct the deficiency, but some of the many health benefits seen from getting adequate nutrients in foods are not seen when taking supplements.

Cheri: This is a major factor in our assessment of nutritional intake. It is more than just the child’s weight. We look at growth patterns over time. A child may be weight appropriate or overweight, but still be significantly undernourished. Some of our children are so severely aversive that they literally eat one or two foods. We have had children drink up to 80 ounces of juice or more a day and accept chicken nuggets and crackers. We see children who accept no milk, no fruits and no vegetables and cannot tolerate vitamins. We have successfully expanded the diet significantly in about three month’s time for most of our patients. But, the work continues as we want this to be a lasting change across all settings.

Alicia: Let’s say a parent thinks there is a problem with the way their child eats, what’s the next step? What if I already have a speech therapist, would he or she automatically know how to deal with feeding disorders?

Laura: The next step would be to talk with your child’s physician about your concerns in order to obtain a referral to a feeding team, speech pathologist, occupational therapist or registered dietician. Your physician may be able to guide you to a therapist who has experience in the area of feeding and swallowing disorders. Not all speech pathologists have the knowledge base or experience to treat feeding and swallowing disorders.

Cheri: There is so much to look at if it is not going well. Is the child chewing and swallowing well? Has there been a history of frequent colds, congestion, and unexplained fevers, “asthma” that doesn’t improve with treatment? These symptoms can indicate an underlying problem with the swallow. A therapist will know how to assess and recommend changes that help your child feel safe while feeding. Is the child’s weight very, very low? Does the child nibble on food all day long instead of eat scheduled meals and snacks? Is reflux, vomiting, diarrhea or constipation an issue? Is feeding a very noxious process for your child? Gagging, coughing and crying at meals? Food Chaining is used to build on successful eating with the textures and tastes of foods that your child tolerates well and expanding out in a systematic way to get to new foods, but not before a comprehensive medical assessment is completed.

Alicia: How can you help a child that has an Autism Spectrum Disorder and feeding issues?

Cheri: It is tough work. I pray for my kids, that God will give me eyes that see. We are very focused on developing multidisciplinary programs that are sensory based and contain a cognitive component to learn about food. Sometimes it is a challenge to teach a child with autism about food, but it has to be part of your treatment program. Children with autism have to learn to tolerate haircuts, dentist appointments, bus rides, school, the world and they learn from all of those experiences. Eating is a learning process after age six months. I try to get through to therapists that ALL children can learn about food.

I did eight years of special education before I came to the hospital and when I started lecturing I was (and still am) shocked by the “he is so low” (cognitively) mind-set of many therapists. Once, I talked to two therapists about ideas for their patient with autism and everything I suggested was met with the response, “He won’t eat that.” Finally after about ten suggestions were nixed, I said, “Then you and I have nothing to talk about do we?” They were speechless, but I then told them, “He can’t eat it, if you don’t offer it. Stop setting limits in your mind.” One time another therapist said to me, “Isn’t PDD really ‘pretty damn dumb’?” Whoa, educated fool front and center! Remember, not all therapists are good at what they do and it is so important that the therapist be the right match for the child. If not, get another therapist!! Remember too, there are a hundred plus steps to eating as Kay Toomey, PhD discusses in her lectures. When I watch the child with autism eat, he is looking at labels and visually inspecting his food before he eats it, holding it, smelling it…this child is showing you what he knows and how he learns!

We also try to help families change their way of thinking about meals. We have to get everyone out of the habit of not offering a new food because of the assumption that the child won’t eat it. I think what makes us unique is our Food Chaining© programs. We use foods as desensitization tools in treatment and we help give the family a plan to offer foods the child is most likely to accept.

Alicia: Some children display ‘characteristics’ of an Autism Spectrum Disorder as an infant and this can interfere with the way a parent bonds, plays with, and feeds their baby. I remember having a difficult time holding Ewan as an infant because he wouldn’t ‘mold’ while being held and certainly had a hard time with the closeness of breastfeeding. What kinds of issues would a parent see with an infant who is nursing or bottle-fed and how can you help?

Cheri: I am always concerned when I hold a baby that cannot tolerate handling well. Coordination of the suck/swallow/breathe sequence is the absolute foundation to feeding.  The nippling skills an infant learns are vital to future eating. When a child can’t get liquid through a nipple easily or cannot breastfeed well, he needs to see a therapist. The help of a dietitian is also required.

Laura: A team evaluation would be beneficial for any child who is experiencing breast and bottle feeding difficulties. An infant may require a change in a nipple/feeding product that provides a different sensory or motor experience. An occupational therapist can provide an assessment and therapeutic intervention for positioning techniques, sensory imput, and an assessment of environmental cues/stressors that may be impacting the feeding and bonding experience.

Alicia: What specific issues do children of all ages with Autism Spectrum Disorders have when it comes to eating and feeding problems?

Cheri: I believe that many children with autism use the foods and liquids they accept for more than just nutritional intake. I think that the act of eating or drinking is part of the way the child regulates the sensory system. I treated one child that drank 10 cans of Pediasure all evening after school. 10 cans! She was drinking from a spill proof sip cup and it provided enough resistance, that she was using the act of drinking to calm and regulate her sensory system. I find many children seek uniform textures when eating and their food repertoire contains foods that do not change much when consumed. The child wants to know how a food is going to smell, taste, feel and sound during the process of chewing and swallowing. It is also important to know if a food or liquid coats the throat after swallowing or if there is an after-taste. I think that after-taste is a huge part of feeding aversion and no one ever talks about it. I would give anything if I could truly understand what my little patients go through, and then I would be so better equipped to help them.

Alicia: The old adage is that if a kid is hungry enough, he or she will eat. Is this fact or fiction? How would this apply to a child that has an Autism Spectrum Disorder?

Laura: Experience has shown me time and time again that for children with a feeding disorder this is definitely fiction. My best example is a child who had been on a food“strike” for four days because her parents were advised to take away all of the child’s preferred foods and only present new foods that he had never eaten. For children with a diagnosis of autism, their sensory system, anxiety, or fear may not allow them to eat an unknown food. Food chaining techniques identifies” anchor foods” that are always accepted, “staple” foods in a child’s repertoire that are not changed. Also, remember, changes are not made all at once and an initial modification to a food may only be presented at one snack time per day at first.

Cheri: One of the most dangerous myths out there. Absolutely not true. The child with autism may not even recognize the sensation of hunger or if he does, he does not associate it with the act of eating.  

Alicia: What’s the biggest stumbling block parents come across when starting a treatment plan for feeding disorders?

Laura: As a parent of two small children and a therapist who helps infants and children with feeding problems, I know how difficult it is to implement change. When implementing a feeding program, consistency is a key factor. Patience is also necessary to stay the course of treatment so your desired outcome can be achieved. It is also imperative that all family members and caregivers are invested in the feeding plan so the most successful outcome can be realized.

Cheri: Busy lives, stress, and a million tasks to be completed each day where just getting food on the table is enough of a chore! Feeding may only be one of the challenges a family faces each day. Meals can become all encompassing and each day becomes “success or failure” based on what your child ate that day. We tend to lose our power as parents sometimes because we just want the child to eat and a two or three-year-old child is in charge at mealtime. I had one parent who was taking her child to the movie theater every night he didn’t eat because she knew he would eat the popcorn and candy there. Bless her heart! But look at what cycle you are setting in motion and how you are reinforcing the child not to eat at home. This really speaks of the level of fear and stress this parent has felt to get to this place. A feeding team can help bring you out of that cycle, but you must release the problem enough to allow us to intervene.

Alicia: What does your feeding clinic do that separates it from all others? In what ways is it better or more functional for families than what’s currently available from other strategies?

Cheri:   I like it that we get down to the nitty-gritty and provide treatment that gives the parent not only a treatment program with sensory preparation for meals and oral motor skills, but also a specific list of foods to offer in a progression the child can tolerate. We also follow the families very closely. They contact me by email, voice mail, postal mail with information about how it is going and I keep refining the program. That amount of follow up with a feeding specialist is not common. I like how we try to empower the parent and have the family implement the majority of the treatment plan without dumping it on them. It is fun working with a child’s families and local therapy teams; they teach us so much. You and Stacey (Ewan’s SLP) have taught us all kinds of new and creative ways to work with children with autism through your treatment program for Ewan. We were in complete awe of where you went with his treatment. We all get to help each other and through that we help other people.

Alicia: Any parting words of advice for a parent who’s just had enough?

Cheri: Parents will a lot of advice and all of it may conflict or sound pretty much like the same old blah, blah, blah. The frustration occurs when you try to make changes and it does not work. There is a sensory hierarchy (seeing food, smelling food, being able to touch it with a utensil, with the hand, bringing it up to the mouth, licking it, tasting, chewing and finally chewing and swallowing) to eating and getting food to the mouth is the last step. That part is frustrating and that is where a lot of programs fall apart. But that is the key to success. I tell people all the time food chaining alone will not be the answer. You must develop a comprehensive program that supports food chaining. The program must address all sides of the disorder or it will all fall through that ‘hole’ you left in your program. This is about the right bottle, cup, spoon, consistency of food and liquid, positioning, the feeding environment, the feeder-child interaction, the amount of stress around meals, the sensory analysis, the food analysis, the nutritional analysis, the digestive tract disorder assessment, the child’s desire to eat, hunger and satiety patterns and then and only then it is about the food items. We must make sure we haven’t missed an underlying medical disorder. When we are ready to start food chaining, the food is used as therapy tools, but everything else must be there too to get the program going. Sometimes, the scope of treatment makes parents feel it is too much or we don’t do a good enough job of communicating the process and they lose hope and walk away. Quick fixes are not our goal. Our goal is to build feeding success that will last a lifetime. It took a while to get to the place where your child is now and it will take a while to get out. All family members must agree to follow the program too. “A house divided cannot stand.” One other thing, I blamed myself for so much of what Luke went through during the years we didn’t have a diagnosis for his vomiting, we Mom’s are good at self-blame, please don’t blame yourself, but be open to change and suggestions to turn this around.

Laura: There is help and support out there for you! Many professionals are available to design and implement treatment programs and parents of children with similar struggles to network with for support. There are many different types of feeding programs and approaches that can be matched to the needs of your child.   

We here at The Autism Life.com would like to express our deepest thanks to the entire feeding team for taking the time to do this interview and to help parents understand more about feeding issues and autism. It’s not an easy fix, rarely anything that is worth doing is, but it is the most comprehensive way of treating and understanding the complex feeding issues children with an Autism Spectrum Disorder face. I also want say that our experience with the team, including Dr. Fishbein, has been phenomenal and they really are extremely supportive. This is one of the few teams I’ve ever worked with that takes the time to respond to your concerns and keeps in contact with you, your family, and any progress that your child is making. Dr. Mark Fishbein, formally of SIU School of Medicine, has worked extensively as part of this team and even though he has transferred to Children’s Memorial Hospital still collaborates with them. Cheri Fraker and Laura Walbert have transferred to Memorial Health System in Springfield. Sibyl Cox can be contacted at SIU, also in Springfield. If you want any further information please contact them at:

Mark H. Fishbein, MD, pediatric gastroenterologist

Children's Memorial Hospital

Attending physician, Gastroenterology, Hepatology and Nutrition

Department of Pediatric Gastroenterology

Specialty: Gastroenterology, hepatology and nutrition (digestive disorders)

Sees patients at

Children's Memorial Hospital

2300 Children's Plaza (Lincoln and Fullerton)

Chicago, IL 60614

1.800.KIDS.DOC

 

 

Cheri Fraker, MS

Pediatric Speech Pathologist, CCC/SLP, CLC

Clinic Oral Feeding Specialist

Koke Mill Medical Center

3132 Old Jacksonville Road

Springfield, Illinois

217-862-0400

www.preemietalk.org or preemietalk@insightbb.com

 

 

Sibyl Cox, MS, RD, LD, CLC

Pediatric Dietitian

SIU School of Medicine

217-545-0702

 

Laura Walbert, MS

Pediatric Speech Pathologist, CCC/SLP, CLC

Koke Mill Medical Center

3132 Old Jacksonville Road

Springfield, Illinois

217-862-0400

www.preemietalk.org

 

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