After the onset of autism, it was difficult to tell if Matt was in pain. No “ouch”, no cries, no running to mama. Whether it was the common cold or something more serious had to be determined by symptoms, as many as could be observed. If he fell, did his knees hurt? Did his hands? One of the worst things about autism is that it can rob a child of the ability to communicate pain. Their brain has to relearn through experiences by making new connections in the brain, and this takes time.
Matt was only 3 years old when I learned the hard truth about his ability to communicate pain. We were at Margie’s house, my neighbor around the corner. Christopher and Matt were similar in age to Margie’s 2 boys and were instant friends from the first day they met. Matt had just been diagnosed a few weeks before.
The kids were all playing on the swing set. It was one of those, “bet I can swing higher than you” games. Matt was watching the 3 older boys get higher and higher. The arcs of the swings seem to fascinate him. He moved closer to get a better view – a view directly beneath the path of the swings. Try as they might to slow down or deviate away, the boys were unable to prevent the inevitable – Matt was hit with a swing. He fell to the ground where he laid for only a moment. Matt was in the process of standing back up when the boys slammed on the breaks, preventing a second strike.
Blood was flowing down Matt’s face and he swiped at it with dirt covered hands, seemingly annoyed by its presence. I finally reached him and snapped him up, and headed toward the house. He fought me, struggling to get back down, back to playing. I was interrupting his view, taking him further from where he wanted to be, his squirming was relentless. Blood and dirt had mixed together and was smeared across his face, and darker blood kept bubbling from beneath the caked-on crust. Margie brought a wet cloth and I washed Matt’s face – no easy task as he was still fighting me. The cut was on his chin, a nasty one inch gash that continued to bleed. Margie brought gauze and butterfly strips and band-aids. I applied pressure for several minutes, and Margie held him tight, talking soothingly to him. We got him mended and released him back into the wild.
Matt headed right out the door and back to the swings. The boys were no longer on the swings and were engaged in other play. Matt strode over to an empty swing and lay across the seat, pushing himself back and forth with his feet at a pace similar to rocking in a chair.
Margie and I just looked at each other. “Do you think he even felt that?” Margie asked. “I don’t know” was all I could reply. I had to start paying closer attention to this new phenomenon.
I did pay closer attention. I discovered that he did feel pain but he didn’t know how to respond to it. Each time he was hurt he would swipe at the offending place on his body as if to brush it away. His face revealed confusion – not agony or fear. I would respond by going to him, kissing the injury and placing a band-aid. Eventually, Matt came to me. He would hold out his injured part (a hand, a knee) to be kissed and would insist on a band-aid. Even the tiniest of scrapes required a band-aid. Matt learned how to deal with an injury to a visible part of his body. Pain that came from within was much more difficult to deal with.
Years later, after Matt had begun to speak, I noticed him acting more tired than usual. He coughed only on occasion – but it sounded so deep, and he ran a low fever, nothing that would suggest anything worse than a simple cold to the unobservant. “Are you O.K?” His eyes a bit glassy, he just lay on the floor and lined-up his cars. He replied "yes" as he nodded. But something was wrong, and I could not put my finger on it. Where’s the energy? Where’s his usual smile?
Christopher was fighting a sinus infection and we were going to take him to see the doctor. We decided Matt should see the doctor as well. The physician examined Christopher and gave us a prescription for his infection. He did a quick once over of Matt and pronounced him to have a simple cold. Matt never coughed at the doctor’s office. As we were leaving Matt coughed - it was so deep and it rattled.
I was married to Tom by then, and Tom was an respiratory therapist. I voiced my doubts about the common cold and he agreed – we would take Matt to another doctor. We left one doctor’s office and drove directly to another. When we were taken back to the exam room I again told the doctor of my concerns. This time an X-ray was ordered. Getting Matt to cooperate was an enormous challenge, but a clean film was finally achieved. The verdict? Double pneumonia and 1 lung was completely full. Matt would need to be admitted right away.
Double pneumonia! It must have been very painful to cough – or even breathe.
An IV, a strange bed, a strange room. The ordeal must have been terrifying for him. I stayed with him, slept right there. It chills me to the bone to think what could have happened had we not taken him to a second doctor. His first doctor stopped by the next morning and apologized. I could tell by the expression on his face that he had thought of the “what if” also. Autistic children were rare back then. I am sure the doctor learned something about listening to the parents of an autistic child.
Matt responds to pain adequately nowadays – but only if you can see an injury. It’s still difficult to tell if he feels bad, or if he hurts inside. He has never complained about a sore muscle, a sore throat, or a stomach ache. For me to know if he is ill, I have to grill him. I keep hoping this particular autistic trait will eventually just go away. In the meantime, we keep our eyes open and watch for the subtle signs of pain.
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