Tuesday, November 15, 2011

Special Needs

I got back to work three weeks ago. Because of scheduling difficulties and because he is now in a day care,  I haven't yet gotten to see one of the boys I work with. Today I called his mother and asked how he is.
"Really good," she said. This weekend he ate a whole bowl of food by himself'. I heard the delight in her voice. "Did he use his fingers"? I asked her. "What did he eat?"
"He ate our food with us. I cut up some pasta and some fish and some vegetables and put it in a bowl. He ate all of it, using his fingers. He picked up the pieces and put them in the side of his mouth and chewed them up and swallowed them. He ate all of it!"
He is two years and three months old, and until now, he will only accept soft food. He doesn't put his fingers in the food or bring anything to his mouth. Any bit not acceptable to him he spits out. I was thrilled and delighted with her news. I will see him tomorrow.
No one who is not involved in the care of a child with special needs can imagine the joy, relief, and delight one feels when they do something that typically developing children just do automatically. Two weeks ago I watched in unmitigated joy as my little cousin of ten months sat in her high chair, grabbed the pears, the bread, the pieces of cheese, and everything, in fact, that was offered to her. She got the food to her mouth and chewed and swallowed and ate some more - a two-fisted little eater obviously enchanted with her food. After finishing every last morsel she was removed from her chair, and then showing good fine motor development she picked up the crumbs from the floor. An efficient little vacuum. Finally content with having done a thorough cleaning job she stood up, smiled, and sat down. She had our undivided attention so she performed this remarkable trick a few times .
How miraculous when everything works as it should, a superb intricate enmeshment of different systems working in unison in a little being.
I returned to the news that one of the boys with whom I had worked had died. He was two and a half years old. In his case, it was probably better for him, he suffered from microcephaly, he was blind, and deaf, and had to be fed through a g-tube. At the same time he responded to his parents' voices and presence, he interacted with his environment, touching objects with different textures. He loved music and responded to it by smiling. His parents and sister were devoted to his care. They are devastated. All I could do was tell his mother how very sorry I am, and what a good parent she was, and that she took wonderful care of him. She was so upset that maybe she had done something wrong to cause his death, by not giving him enough medication, or by giving him too much medication, or maybe she gave him water incorrectly, or kept his room too warm or too cold.
"No, no, no, you did nothing wrong at all." How can one console grieving parents? I would never say "it is for the best." All I can do is listen to them, and show I care.
It is not always easy.

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