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But she asked me how I was doing in a way that made me think she cared about my answer, and then she murmured soothing things about how hard it had to be, and somehow it all came spilling out. Marco leaving. Trying to work from home because childcare simply wasn’t an option. Dylan’s needs—mainly his need for me, the way he always clung, the way he worried about everything, the fears he had that knit us together as if we were fused at the bone. And while I couldn’t have imagined it any other way and I’m not even sure I would have even wanted it any other way, sometimes, only once in a while, it felt too hard.
“It just never ends,” I remember saying, trying to hiccup back my sobs. “There’s never any break.”
Susan asked gentle questions about support, and I had to confess I didn’t have any. My mother lives in New Hampshire with her second husband, who runs some kind of organic farm shop, and has no time for me, never mind Dylan. My father still lives in the house I grew up in, in Bloomfield, but isn’t interested and never will be. Friends? I lost them a long time ago, what ones I had. Work colleagues? I make cheap jewelry and sell it on Shopify, squeezing in my hours when Dylan is occupied or asleep. I don’t have any work colleagues.
“What about neighbors?” Susan asked with her oh-so-sympathetic smile. I live in a duplex that has been divided into three apartments; Dylan and I are on the ground floor. I told Susan about Angela, the well-meaning elderly lady upstairs who has Alzheimer’s. She’s invited us in once or twice over the years, but her apartment is full of fussy little knickknacks and I don’t want Dylan to break anything by accident.
My neighbor on the top floor is a man who drinks a lot of beer, judging from the recycling bin full of cans on our shared drive, and plays a lot of violent video games, judging from the noise that filters down through the ceiling. I don’t know what else he does, if anything.
So, I explained to Susan, there was basically no one, and I know most everyone has trouble understanding that, how absolutely alone you can be when there are people all around you, when most normal people have parents and siblings, relatives and friends, a whole spiderweb of support that has been completely and utterly beyond me. But really that’s how it was, how it’s always been, at least since I was eighteen. No one.
So Susan comforted me and then she told me she thought I needed some support, and she suggested a group that met at the community center in Elmwood, for parents and caregivers of autistic children. Except Dylan wasn’t autistic; I knew he wasn’t. I’d looked up the symptoms and they definitely weren’t his. He made eye contact; he didn’t have “sensory sensitivity”; he didn’t engage in soothing, repetitive activity, unless I counted building with Lego or doing jigsaws. Although he was often silent, it wasn’t from lack of ability. He could speak,
but he chose not to.
Still, I knew, to the average observer, he could seem autistic, just because he was different, and shy, and a bit high-strung. I was sure Susan meant well, even if she didn’t understand us at all.
I couldn’t take Dylan to a support group, not even one with people who would be understanding, with lots of soft toys and a soothing atmosphere and all the rest of it. Dylan gets nervous in crowds; he sticks to me like glue at the best of times, even when we’re alone. We only go to the park or library when they’re virtually empty, which means showing up right at opening or right before closing.
Neither could I go to a support group without him, because nobody has taken care of him besides me since Marco left. Marco stopped visiting years ago, even though he also lives in Bloomfield, the next town over. Susan asked about that arrangement too, and I told her that Marco wasn’t involved beyond visits once or twice a year, although he did put some money in my bank account once in a while.
So, for the last four years it has been Dylan and me for every single minute of every single day—and mostly, that’s fine. I like his company. He likes mine. Most of the time, we’re very happy together. I love my son, and I’ve figured out a routine that works for us both. Mostly.
So when Susan gave all her well-meaning and totally improbable suggestions, I just smiled and murmured something vaguely affirmative, all the while knowing she wasn’t going to be able to help me at all.
And she didn’t. She just put us back on the hamster wheel of appointments with therapists and psychologists that were impossible to get to. I tried once, at least. I took Dylan to the pediatrician for a well visit, since he hadn’t been since he was two. He was seen by a junior associate who had never met him before, which could have been horrendous but actually wasn’t.
The doctor was young and friendly, and fortunately seemed unfazed by Dylan’s behavior—sitting on my lap the whole time, not saying a word, and burrowing his head in my chest whenever the doctor tried to talk to him.
But, amazingly, Dylan still passed all the usual checks—his hearing and eyesight were perfect, he could point to an object or arrange things in order, and in the end the doctor said he didn’t see any cause for concern regarding developmental delay—code word for autism—and he sent us on our way with some ridiculous but well-meant advice on children developing at different rates in terms of social behavior.
It was enough, thank goodness, for Susan to leave us alone, saying she’d check up on us in six months.
Sure enough, she came back six months later, when Dylan had just turned six.
I hadn’t taken him to any other appointments, of course, which she already knew, and she walked around the apartment and made little notes and ticks on her clipboard which made me want to scream. What did she see? What was so wrong?
“You share a bedroom?” she asked in a neutral tone that didn’t feel neutral at all.
“There’s only one bedroom in the apartment.” I didn’t think it was as weird as it might have seemed—the only way Dylan went to sleep is if I was lying next to him. So yes, we slept in the same bed. It’s easier. And anyway, what about all those people in the Middle Ages who slept, like, six to a bed? That wasn’t weird, was it?
Susan came into the kitchen, which was messy, I knew. I usually saved doing the dishes till the end of the day, when Dylan was asleep. I cringed at the way she looked at everything—the dirty dishes piled in the sink, the spilled cereal on the table. All of it made me feel so guilty, but surely I wasn’t the only mom in the world whose kitchen wasn’t sparkling?
“How is your work going?” she asked in a kindly voice, and I said it was fine, even though it was hard to find the time to make beaded bangles and whatnot when Dylan so often needed my attention.
“And you’re homeschooling Dylan?” she continued in that same neutral tone as she came back into the living room, which was also messy. Dylan had got a puzzle out and was putting it together by himself, which I hoped counted for something. He loved puzzles, and fortunately I could usually pick them up for cheap at tag sales.
“Yes, I am.” Which I thought she must already know, because I’d filed an intent to homeschool with the education authority right after her last visit. Not that I actually was homeschooling. Dylan was only six and I figured puzzles and books were enough to occupy him at that age. He knew some letters, and he could write his name. I read him stories and sometimes we colored pictures together. What more did a little boy need?
Susan nodded slowly. She talked a bit about the missed appointments, and encouraged me to go to that support group, and then she smiled at Dylan and said that, despite some challenges, he seemed happy. And then, thank goodness, she left.
That was a year ago. And now I’m sitting in a stale-smelling little room at the police station, the kind of room reserved for suspected criminals, with Dylan asleep on my lap because this whole situation has completely exhausted him. At least he’s not screaming anymore. I’ve seen the side-eye the desk sergeant gave me, that silent, judgmental look which I have become so used to. Usually I get it when Dylan melts down in public, and people assume I’m some lame, lax parent who has no sense of discipline, but getting it from a police officer in the station feels a whole lot worse.
He gave me a look like he thought I beat my child, or neglected him in some awful way, when nothing could be further from the truth. My entire life revolves around Dylan. Whether that’s a good or bad thing might be up for debate, but the truth is I’d do anything for my son, and I’ve sacrificed my whole life for his happiness—gladly.
Because, actually, I wasn’t always like this. A lifetime ago—well, about ten years—I was your normal teenaged girl, from a middle-class family—well, almost—planning to go to Connecticut State, working weekends at the Gap in West Farms Mall, being all cute and chirpy as I folded sweaters. I was a quiet girl, not as shy as Dylan, but definitely not the life of any party, but I had a few friends, and a family, and life felt normal.
How I got from that to this is another story, a pointless one since it happened and some of it was my fault and there is nothing I can do about it now.
