"sensory issues" and helping your child with eating

In my work with families around picky eating, "sensory issues" are coming up more and more in my conversations with parents. Even a child who eats an impressive variety of foods, with all kinds of textures, is often labeled with "sensory problems," and parents often feel their only choice is therapy, or giving in– that is only serving the child's limited accepted foods.There is another option, and sometimes choosing not to pursue active therapy may be the right choice, and is not the same as "doing nothing." That option is the Trust Model, described below. (If therapy is helping your child, following the Division of Responsibility in the home and supporting your child with pleasant meals and snacks will help.)I am reprinting Ellyn's latest newsletter because the therapy described here is not right for little Carl, and she offers an alternative approach. He is upset, and the intervention is increasing his anxiety around food. (Here is a link to a video of a behavioral approach to feeding. Put yourself in the child's shoes. What are her cues? Is she learning to feel good about food, and about her skills? Note: for adopted and foster children, withholding a parent's attention and nurturing as a motivation to eat is particularly problematic. I don't think it's the right approach in general, but with a child working on attachment, it is not relationship building.)As I interview clients and parents for my upcoming book, Love Me, Feed Me... for adopting and fostering parents, I hear over and over again how therapy that was meant to help, often slowed things down. As one mom, Kari put it, "Bad therapy is worse than no therapy." Her son, with fetal alcohol spectrum disorder (FASD) had extreme sensory issues, and the OT they worked with tried "every trick in the book," but mostly rewards with candy, to try to get him to increase his variety and "desensitize." The OT gave up about six months later, "writing him off."Kari realized that her son would come around in his own time. They did not do any of the therapies that created anxiety and tantrums, and focused instead on family meals, having him help cook (which he did with a bandana around his mouth and nose) and not pressuring or encouraging him at all. It took years, but with a focus on relationship building and enjoyment, her son, now fourteen is branching out and enjoying things like home-made salsa, which she simply could not imagine years ago.Many children benefit from formal therapies, but others resist and it slows them down. Why? We don't know. It might be feeding history, temperament, rigid thinking from FASD, an intense desire for control, an independent child, the struggle for power or testing parents... If you follow your child's cues, you will know if your approach is helping or slowing things down. What do you think?March 2012 • Family Meals Focus #67 • My Child Has Special NeedsTo comment on this issue, please join on us FaceBook.To sign up for Family Meals Focus Newsletter, click hereTo learn more about the trust model and feeding the special needs child, register now for the three-part webinar Raising Special Needs Children to be Competent Eaters by Ellyn Satter, Pamela Estes and Ines Anchondo on April 26, May 3 and May 10, 2012.To register, click here. For more information, click here.From a mother: Carl, age two years, has been diagnosed with Sensory Processing Disorder (SPD). He was born prematurely and was in the hospital for three months. After he got out of the hospital, it was one health procedure after another, and in the process he hasn’t learned to eat. Instead, he has been fed through a gastrostomy tube. Now he is two years old, he is well, and we are trying to teach him to eat. Our occupational therapist jollies Carl along and plays games until he opens his mouth, then she slips in a little brush and rubs it around. She calls that oral desensitization. Or she slips in food. Then she “rewards” Carl for “eating” by letting him play with a toy. Carl doesn’t like it - he starts crying when we get near the feeding clinic. At home, we are to hold the food close to his mouth until he gives in and eats a bite, then reward him. We are to put on a “happy face” and give him lots of praise when he eats, and not look at or talk to him when he doesn’t. We are to rave about the food, remind him that big boys eat, and play games with the food:“see this little [broccoli] tree, wouldn’t it be fun to eat it?” It takes hours, we are all miserable, and his eating is getting worse, not better. The trust model and the division of responsibility in feeding apply to children with special needs, provided they are neurologically intact. From the perspective of the Satter Feeding Dynamics Model (fdSatter), you don’t have to get Carl to eat. Carl is naturally cautious about eating - he missed out on two years’ eating experience, and it is all new to him. He also wants to grow up - with eating as in all ways - and you can trust him to manage his own anxiety about eating and push himself along. You can trust him, that is, provided you give him plenty of time, developmentally appropriate opportunities to learn, and do not pressure him in any way to eat.In contrast, your OT believes that children with SPD or other sensory issues need pushing from the outside in order to get past their anxiety and learn to eat. She uses various forms of pressure, such as enticement, distraction, approval, reward, and punishment. Children react to such pressure by resisting, rather than mastering eating. Little wonder that pressure-based clinicians assert that “a child with a feeding problem would starve to death rather than eat foods beyond their comfort level.” Sensory issues do not make children behave in such an abnormal fashion relative to eating; harsh feeding practices do.Common sensory issues Don’t let your hands be tied by an SPD diagnosis. Children with sensory issues are slow to learn, but they do learn. Keep in mind that everybody’s got something about themselves that they have to learn to manage. Many children have sensory issues - they are temperamentally negative, shy, or slow-to-warm up, are so sensitive to tastes, textures, and even smells that they gag or throw up, and are reluctant to touch certain textures or wear certain clothing. See FMF #20 But with plenty of time and no pressure, they manage their own anxiety and push themselves along to learn.What to do

• Stop thinking of Carl as a special-needs child and think of him as a toddler.
• Make the transition in your own thinking. In the past, others have treated Carl. Now you are helping him learn.
• Get help if you can find it, from someone who is well grounded in fdSatter. Making this transition requires a leap of faith and steady nerves.
• Tell your health care provider what you plan to do and ask some questions
  • Does Carl chew and swallow normally?
  • Does Carl have any neuromuscular, digestive, metabolic, or medical issue(s) that complicate or prevent his learning to eat?
  • Is Carl in good enough nutritional shape to carry him through a time when he might eat less?
• Feed Carl like he is a normal, extremely pickychild - which he is. Give him many unpressured chances to learn to eat, be patient, and prepare to be surprised and impressed.
  • Have a dietitian guide you in gradually cutting down on the amount and timing of Carl’s tube feeding so he can be hungry but not starving at meal- and snack-time.
  • Establish a division of responsibility in feeding that is appropriate for the toddler.
  • Include Carl in the family’s regular, family-friendly meals and snacks. Include foods that fit his ability to do it himself: to pick up, mouth, chew, and swallow.
  • Trust Carl to cope with his sensory issues, including gradually developing positive attitudes about eating, getting over his fear of eating, and resolving his aversion to having anything in his mouth.

Be consistent in providing Carl with opportunities to learn and just as consistent about not pressuring him in any way to eat. Then observe the little ways he pushes himself along to gain eating competence. He will come willingly to the table, enjoy being there, and behave nicely. He will look at food and watch you eat it. He will want the serving bowl by his plate but not want the food on his plate. He will put food on his plate and might even touch it but not eat it. He will do his own oral desensitization by putting food in his mouth and taking it out again - probably many times. Eventually he will swallow the food.Expect Carl’s progress to be uneven.  As fdSatter feeding therapist Pam Estes observes, he is likely to not do, not do, not do, and then he will do!Then go off by yourself, shed a tear or two, and celebrate. But don’t let Carl catch you at it. As far as he is concerned, his learning and growing is all in a day’s work.Copyright © 2012 by Ellyn Satter. Published at www.EllynSatter.com.Rights to reproduce: As long as you leave it unchanged, you don't charge for it, and you include the entire copyright statement, you may reproduce this article. Please let us know you have used it by sending a website link or an electronic copy to info@ellynsatter.com.