“There’s poop on the walls again.”
That image of my childhood is forever going to be synonymous with Autism and my brother, Caleb. He was born in 1993, just two short years after me. From his first breath, he struggled. Newborns are born with life-dependent primitive reflexes, one of which is the ability to suck so that they can nurse. My brother had to stay in the hospital after my mother was discharged; he couldn’t seem to get the hang of it.
After a shaky start, he did okay for a while. In fact, you might say that he did more than okay: he walked at nine months, which was actually quite unsettling for my mother. A nine-month-old is a very small baby to be on foot, and she had planned on having a few more months before she’d have two kids under the age of five to chase.
For Caleb, the regressive symptoms of Autism came just on time: before age two, he seemed to lose developmental milestones. He wasn’t talking, though he could spell things out with blocks and would routinely do math on a magnetic drawing board that he took everywhere. The world seemed to assault Caleb constantly; everything was too loud, too bright. He wasn’t an affectionate child. He didn’t want to be hugged or kissed. What calmed him was lying on the bed for hours, motionless, watching the numbers of the digital clock change.
This was his idea of peace.
He did not potty train on schedule. Instead, he had somewhat of an intense penchant for smearing feces all over the rug and walls of the house. This was his way of saying, “No, I’m not ready yet.” He couldn’t tell anyone he had pants full of shit. Within a few short years, he did figure out how to get his own pull-ups when he had to poop. His relationship to the toilet had nothing to do with his bodily needs: the toilet was his method of rejecting objects. If he didn’t want something, he’d flush it. It took a little while for my mother to catch on; she figured he was acting out by flushing his pacifier, so she kept replacing it. He kept doing it. Finally, she figured out he didn’t want it—and he couldn’t tell her that, so he came up with a clever, albeit expensive, way to show it. Eventually, he learned how to convey distaste in a way that didn’t compromise our septic tank. By the time he entered school he was, thankfully, potty trained.
He was only aggressive in the sense that, when startled or overwhelmed, he would kick and scream. They started out seeming like normal tantrums; but while most kids could be consoled, Caleb could not be, and he would have to literally wear himself down before he would stop. For hours, he screamed, kicked, punched—it was painful to witness, even as a child, because it wasn’t like he was doing it because he was a brat. He was living in a world that he didn’t understand and couldn’t communicate with. As hard as it was for all of us to listen to him, we couldn’t blame him. At this point, we had no idea what was “wrong” with him. There were times when my mother would have to hold him down and douse him with cold water, just to “shock” him out of what she described as almost a seizure: his tantrums seemed to overtake him physically and emotionally. After, he was lethargic and almost sedated.
Sometimes, he would have two or three “meltdowns” a day.
Early on, he didn’t respond to noise. You could scream his name and he wouldn’t look up. My mother used to stand behind him when he was just a toddler and bang pots and pans furiously, begging him to react to something. This made us wonder if he was deaf, but all it took was a simple hearing test to rule that out. When he was around two, and had an initial comprehension evaluation, my parents were disheartened to hear that he had only tested at the level of nine months old.
He was years behind.
Unrelated to the Autism, but something that made his life all the more difficult, was that he had terrible vision. He got glasses very young, and there’s a chance his vision could have improved if his eye could have been patched. But for kids with Autism, tactile experience can cause rages; and he couldn’t have kept an eyepatch on for three seconds, let alone the time it would take to rewire his brain. Although he wouldn’t have an official Autism diagnosis until he was seven years old, as a small child the pediatrician was aware he was not meeting his milestones, particularly verbal ones. They called it “apraxia” and he had speech therapy right up until he started school. Not having any “real” diagnosis, though, wildly compromised his ability to get any services.
Not that there were many to be had, though.
There weren’t really many voices in the Autism community when Caleb was little. It hadn’t yet become a “cause,” nor was it featured in the news or even celebrity gossip. Everyone who knew us knew that Caleb was different. Once he started school, the nightmare only intensified. I say that not to describe what life was like for us, but for him. School, with its unpredictable nature and constant social interaction, its lack of structure for kids who needed anything other than “normative learning.” The truth was, Caleb wasn’t really special needs. He was extremely intelligent. Rain Man? Yeah, you bet. That’s pretty accurate. Caleb’s mental processing ability was far superior to most, but his social skills, common sense and basic ability to complete activities of daily living were virtually nonexistent. It was these things, of course, that were the focus. Public school has its limitations, and to start out, it was difficult because of his frustration. I would routinely be called out of class to try to calm him down, my mother always had to pick him up because he would be inconsolable and disrupting class. By now, he was talking, but he was predominantly “parroting”; that is, repeating phrases he had heard on TV, or from me and my parents. This got him into a little trouble: the thing about Autism and echolalia, as it’s called, is that he did have some concept of when he should repeat a certain phrase. He could parrot with context. And even though it’s sort of against what we think of when we think about the Autistic mind, Caleb was capable of being very funny, I would even go so far as to say witty.
Once, when he was in the first grade, he was frustrated by his male teacher and there was, of course, a tantrum. The teacher was so overwhelmed that he needed back up and headed for the door to ask the teacher across the hall to help. Thinking, I imagine, that he was walking away from the situation entirely, my brother yelled at him just as he passed the threshold,
“Don’t let the door hit you on the way out!”
He was six years old.
There were other far less amusing occasions. My mother can recall having to come pick him up when he was in Kindergarten because he had taken off all his clothes. The teacher had locked him in the bathroom, taken all the kids out of the room, and basically barricaded him in there until she showed up.
Needless to say, she was not pleased with their solution to the problem.
It wouldn’t be the last time he was locked in a room because of some kind of disruption, and once she got wind of it, she immediately put a stop to it.
No one could say what Caleb needed, because no one understood Autism. But my mother knew one thing for sure: he was still a child, a person, and he was deserving of kindness and respect.
Because of the genuine kindness and improvisation of many teachers and ed techs, Caleb continued to move through school with only minor SNAFUs. The one thing that presented an ultimate source of anxiety was fire drills: unexpected, loud and chaotic, it was his worst nightmare. It finally got to the point where they would tell his classroom teacher ahead of time and he could be escorted outside before it ever happened; but in the case of a prank yank on the ol’ fire alarm, or burnt toast in the teacher’s lounge, he was thrown into a fit of anxiety that would keep him out of school several days to a week. That degree of overstimulation was, for him, almost septic.
At home, his day to day life was more or less consistent. While my experience growing up with a mum with an eating disorder was difficult, for Caleb, the obsessive-compulsive nature of her lifestyle was exactly what he required to stay calm and safe. He and my mother had, and to this day still have, a very symbiotic relationship.
Recognizing this, when I became emancipated from my parents at age sixteen after several years of tumult, it was largely because I knew that if anyone “got involved” (i.e. social services) then Caleb and I both would end up in foster care. The reality was, Caleb would never have survived that. Although the situation at home was detrimental to my well-being, it worked for him. This isn’t an uncommon phenomenon. Two kids growing up in the same house can, and do, have vastly different experiences. Wise enough to realize this, I decided that the only solution was to make sure no one touched him. That his life was uninterrupted.
It worked out fine for him. Although my mother’s health went through periods of such severe downturn that she could not care for him, she had done well by him to teach him independence to some degree. Although he couldn’t do many things by himself (for example: if he wasn’t reminded to eat, he likely would not remember to) he did understand how to follow directions. So, even when my mother was in and out of the hospital, as long as Caleb understood what tasks he needed to fill his day with, he could. My father, being relatively stoic in his approach to having a chronically ill wife, an Autistic son and a divorced-from-the-family daughter, kept him on an even keel until my mother returned home.
During those years, I wasn’t present in Caleb’s life. This was intentional. For him to flourish, he needed to be kept out of the things that were troubling me. He didn’t need the emotional impact. One misunderstood element of Autism is empathy. Caleb doesn’t empathize not in the sense that he has no empathy. This is a common misconception. Autistic kids are not sociopaths; quite the opposite. Caleb is, in fact, so mowed over by the emotions of life and those around him that he can’t process it. So, he doesn’t. He doesn’t have a mean bone in his body and never acts with malicious intent. This creates problems for him, though: if he were ever in a situation where he should mistrust someone who is trying to hurt him, he would not defend himself. For a kid who grew up kicking everyone out of frustration, he would never punch someone in self defense.
By the time he reached high school, my brother had earned himself a pathfinding reputation. He was the first child with an Autism diagnosis in the school district to be fully integrated into a regular classroom setting. The barrage of kids who would come in the next few years were well taken care of because my brother had taught the teachers—and administration—about what it really meant to live as someone with Autism. With the help of some truly devoted and wonderful educators, in particular his one-on-one aid, Nancy, he succeeded. He graduated with honors, and spoke at his graduation. For me, sitting in the audience, it was a miraculous moment. I felt so at peace, finally, with the decisions I had made along the way. More importantly, confirmed what I had suspected all along: Caleb was a special kid with a big heart. And I was the proudest big sister in the world.
After his graduation, my father (a man of few words) shared his own emotions about watching my brother graduate. Although I might be considered the “writer” in the family, his words touched me deeply and I think he puts it better than I ever could.
“In the mid nineties Autism wasn’t as well known as it is today. Dan Marino and Jenny McCarthy hadn’t started to get the word out about their kids, though Doug Flutie was doing his best. We knew something was going on, but no one could put a name on it. The word “autism” was put out there, but back then they could not do diagnostic testing until the kids were around seven years old. We were told Caleb might talk, or he might not. Don’t expect hugs, eye contact and by all means don’t touch. Don’t expect much affection, or even recognition sometimes.
There were tantrums, aversion to noise and crowds, and comfort with being alone. We used the programs available and had the help of a few dedicated people. It took a few years and some patience, but the result was worth every second.
When Caleb read a poem at his Middle School graduation, standing in front of over one hundred people, I cried like a baby. Seeing him take to the stage twice today, I did it again.
Won’t talk? I don’t think so. He will have plenty to say.”
Today, my brother is twenty years old. He still lives at home with both my parents. He is smart, funny and loves to volunteer at the school library. We don’t know what the future holds for him, though this past year we went to the probate court to make preparations for the day when I will be his full guardian. I don’t know what Caleb will be doing in five, ten or even twenty years from now, but I know that my life will be enriched by helping him to take that journey.