Bean and his mama, who loves him so much it hurts. Taken at bedtime on 3/22/2011
Bean came into the world screaming bloody murder. His little shoulders weren’t even pushed from my body, but his face was torqued with pain and what I can only imagine intense confusion over the sensory chaos of being born. Of course, I’m projecting with hindsight, but given what I’ve learned about my now seven-year old son, I think it might be close to accurate. At the time, I remember holding him as I had my firstborn, and wanting nothing more than to comfort and love him. We’re still working on it.
Within days, I knew this was not just a baby needing comfort. All the things I had done with my first son were futile with my second. At three-weeks, I took him in for the first time to ask the doctor what might be wrong. The usual platitudes about breastmilk, colic, gas and letting him “cry it out” were dispensed, and I was sent home with a baby that never stopped crying. When I say “never stopped crying” I’m not doling out hyperbole- if he was awake, he was purple-faced, back-arched, lungs-burning, screaming. He barely ate, had trouble latching and sucking was difficult. He would finally pass out from sheer exhaustion, and quiet would descend for an interlude. As soon as he woke, it started anew. Rocking, bouncing, warm baths, patting his back, driving in the car, the swing, a sling, everything that comforted other babies only seemed to make him panic and scream harder. It was hell- on all of us.
He didn’t stop screaming until after his first birthday.
There are swaths of time in that first year that are lost to me. Having a child that never, ever stops screaming is a level of hell unknown even to Dante. I know my older son moved from two to three. I know my parents came to visit, and my brothers too- but all of my recollections are clouded by intense sleep-deprivation and constant worry about why my child was so miserable. People at church would take him from me, assuming they, with their magic baby hands, could calm him- and inevitably would return confused and frustrated, handing him back to me, still wailing.
He was ten-months old when I first asked the pediatrician about autism. He brushed me off, saying autism seldom presented before 18 months. Looking back, I’d like to meet him in a dark alley and give him a little education to go with his fancy MD. Bean was smaller than my other son, but still growing and other than the screaming, seemed fine. The doctors did not listen to me then- I tried to tell them how he cried in the bath, how he wouldn’t get food on his hands, hated his feet bare, panicked when I changed his diaper… and no one listened.
Around his first birthday, I also got my first computer. And I learned how to to use it. I started reading- reading everything I could find. And I recognized my child in the stories of others. I recognized and learned about other kids who hated food, water, being touched, riding in the car, bubbles in the bath. I got mad. Then I became my son’s advocate. Dumping that first pediatrician, I found another, then another- doctors who listened to me, who believed me when I explained his life. We got assessments, and specialists called and when his scores came back for processing sensory-input in the < 15% range, I cried with grief for his little body and what he’d been going through.
Years later now, with special pre-schools, occupational therapists, physical therapists, sensory therapy, swings, slings, pressure suits, weigh blankets, jaw pressure sticks, brushing, special kindergarten, more OT, more PT, a typical first-grade classroom with an IEP- we are… where? Still in the thick of it. Things are better- yes. But the thing about autism that cracks your heart in two is that there is no cure. It’s never going away. He will never be “better”- and who’s to say what that even means?
In our daily life, this means me, Bean, and my two typical kids are used to dealing with what is kindly called “quirky” behavior. He honks when stressed. He hides and runs away when sound, colors, smells or touch overwhelm him- which is more often than any of us wish- especially him. My oldest son carries the weight of explaining his brother to peers and classmates. He eats the exact same food for breakfast, lunch and dinner every single day. If we are going somewhere, I have learned to pack what he needs, or it’s bad. Bad for all of us. So many times we have had to leave parties, events, socials, plays, parks, restaurants… because he cannot process what is happening. And the general public has little tolerance for a child who appears “normal” but cannot control his limbs, voice or behavior. We’ve felt the sting and heard the comments, believe me.
Tonight, in a fit of frustration, he threw a chair across the room at me, upended a bin of Legos and tried to bite me when I restrained him. There is little that can be done except wait it out, and eventually he comes back to center. The part that is wrenching is his remorse and sadness when its over. He climbs in my lap and begins to weep, and I gingerly place my arms around him before he shrugs them off. He wants to sit in my lap, lean his head on me, but I have to let him touch me- his brain does not process my touching him well. This is another hard part of autism. Rack ’em up. The list grows and grows.
“Mom, I don’t know why I do those things. I feel so bad and I just can’t stop myself and it’s like I just can’t and I want to!” He is sobbing now, and my own tears drop onto his coppery head in my lap. I want to brush his red hair back from his forehead in timeless motherly love, but I stay my hand so he will continue to relax and talk. If I touch him, he will pull away. It’s a constant balancing act, finding ways to show this boy love which he can understand and which are not about what I want.
He came in to hug me three times tonight before he finally fell asleep. The last time, he asked if I could take a picture of “Just the two of us, mom. Mom? I love you.” Yes, my son… and I really, really, love you, too- whatever, however, whenever you need it- I am your mama, and I will love you.