Augie was almost three when he pulled a lamp off a desk onto himself. The light bulb burned a perfect circle into his knee. I picked up my screaming child and could smell the burnt flesh. I enjoyed holding him in the rocker, even though he was crying loudly. If he was awake, Augie was usually too busy to sit in my lap. My friends referred to him as “all boy,” but I wondered if there was more to it. A minute of comforting was all it took before Augie was back up on his tip toes prancing around the room babbling in a language that only he understood. A band aid was out of the question. He would not let anything sticky touch his skin. Ten minutes later, Augie was happily crawling on his knees on the carpet, his burned knee alternating evenly with the non-burned one. He didn’t even flinch or seem to notice the missing layers of skin on his bloody knee. It was at that moment that I realized that something was terribly wrong with my son. I could justify the lack of language: boys talk later than girls; all children develop at different rates. I could justify the lack of social skills: when he develops language, the social skills will come. I could justify the strange behaviors: he’s kind of weird like his daddy. I had no justification, however, for why he didn’t seem to feel pain.
At our next appointment, I pressed my pediatrician about Augie’s high tolerance for pain. He said, “He’s a tough kid.” I asked him about the constant diarrhea. He said “some kids just don’t poop solid.” I asked him about the lack of language. He said “let’s wait and see.” I shared with him that Augie recognized all his alphabet letters, could read a few words, could count to 50, and could even say the alphabet backwards. But he still did not say “Mommy.” He said, “He’s a smart kid. He’ll talk when he’s ready.”
There was a break in the clouds of denial for me. I knew my child needed help, but I didn’t have a clue what kind of help he needed. The pediatrician was the only health professional that knew Augie, and I pushed him to give me some answers. The only knowledge I had of autism was the movie “Rain Man”, so autism wasn’t even on my radar. Augie was nothing like Rain Man. I left the pediatrician’s office frustrated, worried, and feeling very alone.
I was back in his office the next week to talk about Augie’s raging eczema. I wanted to know why he had such bad eczema. The doctor said they didn’t know what caused eczema, and he told me to continue to use the cortisone cream he had prescribed. It was a huge tub of cortisone, and I lathered Augie up four times a day with it. A friend told me to try Vaseline, and so I started greasing him up with Vaseline after every bath and in between the cortisone cream latherings. Augie was still splotchy, itchy, and miserable. His skin felt like sand paper. He had to wear pants even in the summer because the air would dry his skin out even further. We tried every “gentle” soap in the store, and then stopped using soap altogether, except on his hair.
Back when Augie started solid food at seven months, my husband and I realized quickly that he was highly allergic to cow’s milk, so we did not give him milk, butter, or cheese. He loved goldfish crackers though, and when I pointed out to the pediatrician that they have milk in them, he said they were fine. Actually, his answer was “As long as he’s not reacting to them.” I challenged him, “Do you think they are making the eczema worse?” He was very condescending and explained that “Eczema has nothing to do with food.” I told him that I wanted Augie to start speech therapy. I didn’t want to “wait and see” any longer. He told me about Babies Can’t Wait and gave me a referral to a Developmental Pediatrician. Then, as I left his office, he patted me on the back and said, “Relax, you worry too much. He’ll be fine.”The Babies Can’t Wait evaluation showed Augie having the overall language of a nine month old. His language was two full years delayed. They also saw “red flags for autism” and “sensory integration dysfunction.” I was not familiar with either term. I now cringe at my ignorance and denial. My only question for the evaluators was “is he going to die from this?”
The word “autism” was not one I was ready to deal with. In an effort to keep from shutting down with depression, I chose to focus on Sensory Integration Dysfunction, now known as Sensory Processing Disorder. The Out of Synch Child, by Carol Kranowitz, arrived at 4:00 one afternoon. I started reading as soon as the kids were in bed, and I read it straight through to the end. When I reached the end, the book’s spine was broken with lots of pages ear marked. It was marked full of yellow highlighter and red ink pen. I was fascinated! And relieved! This book described my child precisely. I finally understood why Augie loved to crash into things. Why he walked on his tip toes. I understood his holding his hands over his ears and spinning. I understood the staring at his hands as if they weren’t connected to his body, and his inability to point to his own body parts. I knew why he stuffed way too much food in his mouth. I even knew why he didn’t feel pain. I now understood his obsessive need to line things up. He was trying to find a way to cope with a world that was extremely confusing to him.