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Submitted by alicia on Thu, 03/25/2010 - 9:38pm
I have been reading A Child in Pain: How to Help and What to Do by Leora Kuttner, Ph.D. So many insightful thoughts from this book that can be applied to so many different situations. I tend to put everything into the perspective of the child that thinks differently, whether through experience or neurology, and while reading I am constantly reminded of Ewan. When Ewan was born, there were things that were immediately different about him. His alertness, his need for the novel, his sensitivity to the environment and to input, his feeding routines and rituals, all led us to know that we were dealing with a very unique child. He went through many years of having difficulties eating, whether through texture or taste or difficulty swallowing, before it was discovered that Ewan had been dealing with a painful disorder for quite some time. When Ewan was diagnosed with Eosinophilic Esophagitis, I felt so much guilt over every spoonful and bite I had urged, cajooled, begged, and yes, even forced into that little mouth. And I felt the weight of every single one of those bites when he was diagnosed. How could I as his mother, not have recognized this child was in pain with every swallow?
As you can imagine, I am a fierce advocate for children with autism receiving the medical care they deserve. As you can imagine, I find it difficult, if not nonsensical, to lay the blame of all behaviors on the doorstep of autism. So in reading Dr. Kuttner's book, I find myself thinking about what she's written and applying it to our experiences. Some important messages come from what she describes as the language of pain and the language that helps pain go away, something Dr. Kuttner describes as Therapeutic Language. As I remember all the times that I put a spoon to Ewan's mouth and said, "Just take a bite, I love apples! Apples taste so good!" Had I known what was really happening, I might have phrased that differently. What I didn't realize was that with every exchange, I failed to see how my language demonstrated my own perspective and not Ewan's. As Kuttner's says, "What you say and how you say it reflects what you think, as well as what you believe, what you teach, what you expect, and at times what is likely to happen" (p. 93). (my emphasis)
What I failed to understand is that those loaded phrases like "Apples taste so good!" only reflected my own experience with apples, not Ewan's. It didn't acknowledge that Ewan indeed, had a different perspective than my own, maybe he thought apples tasted bitter or sour and not good at all. Maybe as he ate the apple and swallowed it, the first few bites of pleasure were followed too quickly by pain, thereby replacing a favorable experience with a painful and traumatic one. No wonder the child would cry when it was time for meals.
I watched "City of Angels" the other day and some quotes stuck out instantly for me. As Nicholas Cage and Meg Ryan are talking about her eating a pear:
"What's that taste like?"
"You don't know what a pear tastes like?"
"You don't know what a pear tastes like?"
"I don't know what a pear tastes like to YOU."
Taste is subjective. We can learn something very valuable from Hollywood here--I DON'T know what a food tastes like to someone else. I can ONLY know what it tastes like to ME. We need to learn to describe food beyond good, tasty, delicious, bad, or gross. How about how Meg Ryan goes on to describe that pear? "Sweet, juicy, soft on your tongue, grainy, like sugary sand that dissolves on your tongue." Now that's a bit more descriptive and without judgment--no positive and negative connotation with it, not saying it tastes good or bad or yummy or yucky. Pain is also subjective. I don't know what someone else is feeling. I cannot gauge how great or awful the pain is for another human being. I cannot downplay or disregard the pain that someone else is experiencing. However, as Kuttner describes language can be very powerful, "Language that conveys any degree of support, hope, love, courage, energy, or affection, and that promises at least some release from suffering helps children to let go of their fear and pain" (p. 93).
More thoughts from A Child in Pain (Chapter 6):
"Remember what you say is as important as how you say it."
"Do not underestimate the power of listening."
"Define the child's pain by framing it with hope, not doom."
"Use language and ideas that invite hope and courage."
"Pay close attention to the child's facial expressions, positions, and movements throughout the experience."
"Use language that implies positive change." (Another powerful lesson from the Child Development Laboratory at EIU--positive language and rewording negative statements into something positive. More on this later!)
"Pace this process respectfully. Even when we are eager to help and to 'fix it', remember that obtaining this information should be at a pace and rhythm that works for the child. As you show the child that you can wait, you teach not only sensitivity but also patience by your own example"
Think about these points as you work with or raise a child, typical or atypical. Remember these points as you work with or raise a child who is having a problem with some aspect of life, including eating. Remember that your experience is simply that, your own. Remember that pain is experienced in a myriad of different ways by us all. Remember to be respectful of children. I find that adults will attempt to do things or talk to children in ways they would NEVER do to other adults. If you find you can't get away with X with another adult, it's probably not a great idea with children either! (Just try patting another adult on the head and saying, oh aren't you just the most precious thing ever--look at your pretty dress!)