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does this all work if my kids has a chronic illness? what about medicines?

Posted by on Jun 4, 2011 in Blog Posts | 5 comments

I love that Ellyn Satter addressed this, so eloquently as well. Have you used the Division of Responsibility with your child with special needs? Sometimes parents will tell me, “Well, it might work for some kids, but my child has X or Y or Z…” I firmly believe that the DOR has something to offer all children. Oh, and Ellyn is on Facebook now!
June 2011 • Family Meals Focus #58 • Medication and the Division of Responsibility

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This guest issue is from the mother of a 22-month-old who has cystic fibrosis and related severe acid reflux.

As of last week, Bobby gave himself all four of his oral medications: I fill up the syringes with the proper dosage of his vitamins, Zantac, and Prilosac, hand them to Bobby, he puts the syringe in his mouth, depresses the plunger, and swallows all of his medications all by himself! I then hand him a spoonful of prunes with his enzymes mixed in and Bobby puts it in his mouth, swallows, and waits for the next spoonful – he has to take 5 pills for every meal.

Only eight months ago, Bobby ate and took his medication only when I tricked or forced him. I was convinced something was wrong and had just returned from the hospital where Bobby was so resistant they couldn’t even do a swallow-test. The occupational therapist recommended Ellyn Satter’s books. As I read Child of Mine, I realized there was nothing wrong with Bobby – but with his mommy! I had heard about the division of responsibility before from my nutritionist, but I thought, “What kind of crazy lady would come up with that idea – Bobby MUST eat!”

This time I was convinced – at least about food, and I immediately changed my feeding approach. At first Bobby lost 1 pound, but by his next CF appointment, he had gotten the hang of eating and had gained the weight back. I was upbeat and excited, until the CF doctor expressed concern that Bobby had not gained any weight and mentioned the dreaded feeding tube. I panicked that night and almost reverted to my old-tricks, but held firm. But medication was still a concern. How could I do a division of responsibility with that? Bobby had to have enzymes, and I was still getting them into him. I emailed Ms. Satter for advice, and she gave me step-by-step directions on laying out a mastery expectation for Bobby’s taking his medicines.

Here it is: “You can’t use division of responsibility for medicine. Bobby HAS to take it. Don’t force him. Instead, make it clear to him that taking the medicine is his job. Do this with medicine and with nothing else. Get yourself comfortable in front of Bobby. Have Bobby be confined to some sort of chair – preferably one you don’t use for feeding. Hold out the medicine to him – on a spoon, in a cup, in a syringe, whatever. Say, “this is your medicine. You need to take it.” Then keep it in front of him no matter what he does until he voluntarily takes it. Don’t try to put it in his mouth. Don’t try to trick him. Don’t back off. Don’t repeat yourself. Don’t get mad. Don’t cry. Don’t waffle or apologize. Change off with your partner if you need to. Just keep that mastery expectation in front of him. Bobby will try everything he can think of to get you off his trail, including flirting and screaming. Hang in there. This might go on for an hour the first time. After he takes it, say, MATTER OF FACTLY, “good for you Bobby.” Or some such. Do NOT praise lavishly. Each time will get a little shorter and more matter-or-fact.”

The first week was hell – or rather purgatory since I knew there would be paradise on the other side, given how well Ms. Satter’s guidance worked with Bobby’s food issues. For the first week, we spent three hours – one before each meal – until Bobby voluntarily opened and took his medication. But by week’s end, for the most part, Bobby was doing his medications quickly and without fuss. I must confess I had the evil thought, “wow this is great I can do this for all food!!” But I realized that if I did that I would wreck both his eating and his medicine-taking.

I can’t thank Ms. Satter enough–and not just for helping with Bobby’s medications, but for something she said in one of our first email exchanges: She said that of course there’ll be eating issues – you feared that Bobby wouldn’t survive. Throughout the travails of the first year-and-a-half with Bobby’s eating and medication issues, no one else had recognized that to me this wasn’t just about the food or the medicine – but about whether my precious baby would live. That understanding is what I needed to allow me to let Bobby do what he needed to do – learn to eat and take responsibility for his medications.

Copyright © 2011 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.

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5 Comments

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  1. Kristy

    One of the things that really struck me about this post was how Dr. Satter explained to this Mom not only what to do, but HOW to do it and what to expect. Mom had all the tools she needed to succeed, and for Bobby to succeed as well. What a lovely and inspiring story.

    • katja

      yes, I’ve heard many times, “I was always told to ‘get more food into him’ but no one told me how…” parents are often left without the tools to succeed and then are blamed when they struggle…

  2. Lisa

    wow – thanks for sharing that. It’s a good reminder that for some people there is a LOT at stake in learning how to allow your child to have a healthy relationship with food and their bodies. What an incredibly brave mom!

  3. JeninCanada

    What a wonderful story! Thank you for sharing and many blessings and good thoughts to Bobby and his family for happy lives.