I’m reading a new book titled The Shape of The Eye by George Estreich. What an excellent book! He is the father of Laura, who has Down Syndrome. Feeding issues are present throughout, along with an honest (without being discouraging), factual, reflective, inspiring account of the journey, parenting a child with extraordinary needs.
Here are two excerpts:
“The disagreement over the NGtube was marked not by conflict, but by a maddening lack of specificity. Theresa wanted to know what happened if things went wrong; she wanted a plan to help Laura learn to eat again. Instead of a plan, she got reassurance. She was told the NG tube was not particularly invasive, that parents loved it because it made things easier, that it would only be in for a few days, that it would not be uncomfortable for Laura at all. True, perhaps, for other parents, but not for us. As it turned out Theresa’s intuition was correct: NG tubes can have profound effects on an infant’s feeding patterns.”
“Speech, like eating, is as complex as it is ordinary. With typically develping children, the complexities are obscured. When Ellie began to talk – she said her first word, light, on an airplane, pointing up at the reading lamp – we were surprised and happy. But we hadn’t talked to a speech pathologist, and we didn’t know that her tongue had to be behind her upper teeth to pronounce the l. She was eight months old. Laura, at fifteen months, seemed stalled. She could say da da da, and that was it.”