I was thinking about how we had to take Emma to the hospital last week because she was complaining about a pain on the right side of her abdomen. Once there they took an x-ray, told us she was constipated and that we should give her an enema. Everyone became focused on the “constipation” issue, us included and while I wouldn’t agree to the hospital restraining her and giving her an enema no one said much about the fact that she had a fever and that the pain she was complaining about may have been due to the stomach flu. That night when her fever spiked, her body burning up and the following morning when she threw up, it was pretty evident that in fact she did have a case of stomach flu, just as her brother had three days before. But the doctors at the hospital didn’t mention the flu, even though we told them her brother had had it.
What happened in the hospital is an example of how quickly things can derail with an autistic child. The idea that an enema was considered an appropriate next step for a child with a fever, complaining of a stomach ache who’s brother just had a bout of stomach flu, seems somewhat incredible now looking back. I don’t know how many people have experienced an enema, but it is not pleasant. When I was in labor with Nic, I was given one to speed up my contractions. I was in labor for 38 hours. I was determined to give birth naturally and it was thought that the enema would help. I have no idea if it did, but it was both horrific and memorable. I no longer have any memory of being in any real pain during labor, though Richard assures me I was, but I can still vividly remember the enema.
Emma hates enemas. She has had many of them. The minute the word enema was said, she began to cry. The idea that we were going to allow a group of strangers to restrain her as she tried to fight them off (all the while with a fever and the stomach flu) seemed, if not abusive, damn near. I just couldn’t give the okay. I couldn’t. But then once home I began monitoring her bowel movements and that didn’t seem like a good idea either. There is so much talk, articles and books have been written about the relationship between autism and GI tract issues. The whole leaky gut theory adds to the concern that if allowed to continue constipation may even cause neurological damage. With this in mind the word “constipation” when applied to an autistic child feels loaded and it is difficult to step away from the feelings of panic long enough to gain any perspective on what is happening.
Last night, having, until then, somewhat successfully tamped down my feelings of uncertainty, worry, concern, rage and guilt (there is always the guilt lurking) I came in touch with all those feelings and more. But instead of feeling each of these things, initially I just felt guilt. Tremendous guilt that I had begun monitoring her trips to the bathroom, that I hadn’t seen right away that she had the stomach flu, that I had allowed the doctors suggestion that her pain was due to constipation (a hot button for us, as it was such a daily concern for so many of her early years) to override all the other evidence, this was my crime. And last night, I became judge, jury and prosecutor, the only thing missing was my own attorney. I forgot to bring along someone to defend me. Years of blame, years of condemnation came bubbling up as though they had always been there. As though I hadn’t done any work on any of this, as though blaming myself for Emma’s pain would somehow lessen it for her. Let me take her pain. Let me bear the brunt of it. If only I could, I would. If only this was how it worked. Give it to me, just please, please remove hers. She’s just a little girl. I can take it. But it doesn’t work that way, does it? I can’t take her pain from her. I have held on to guilt, the feeling that somehow I am at fault for Emma being born autistic, for the pain that causes her, it is somehow my fault. A kind of mental contortionist, I have found ways to always blame myself. I thought I had gotten better at this. I thought I had let go of most of it. But last night showed me, I have not. It’s all there, waiting. Waiting for the first sign of weakness. This is the fallout.
For more on our journey through Emma’s childhood marked by autism, go to: Emma’s Hope Book