It was the first day of Autumn and his birthday. After almost two decades, choosing a gift for their son tortured them. What should’ve been an easy and enjoyable experience was now a sombre and demanding task that neither of them wanted to partake in. Although age-appropriate desires had not escaped him entirely, gifts popular with teenage boys offered no comfort or use in his world of limited cognition. She decided upon several spinning tops in various colours and sizes.
They had been married more than a decade at the time of his birth; three children had come before him, and now, on most days, they felt enervated by life. Despite this, she knew appearances meant something. That day, she wore her greyinghair pulled high in a bunch on top of her head, which elongated her neck, making her feel elegant like the dancers she admired when she still enjoyed attending the ballet. Unlike other women her age, she hadn’t tried Botox, or anything made essential by celebrities. Her clothing was always stylish but relaxed, looking at 58, as the type of woman she always said she wouldn’t become. Her husband, a semi-retired builder, dressed in a polo shirt, khaki trousers, polished black shoes, and his favourite black suede jacket.
“Are you sure about these spinning tops?” he asked.
“He likes them,” she said.
“It doesn’t feel right, still giving him children’s toys,” he said.
“Nothing feels right about any of this, and besides, it wouldn’t look good turning up
empty-handed.”
“It’s a bit late to be worried about what people think, wouldn’t you agree?”
She frowns and doesn’t reply. Rather than getting into an argument, she let the weight of her silence sink in. The day was already a disaster. They’d almost forgotten the date and went shopping at the last minute. It took forever to find a park four blocks from the care home, which was conveniently near a public hospital, but it meant free parking was scarce. She could never understand his disdain for paying for parking. The clouds tumbled down from the sky, filling the gaps of the tree-lined streets, making the air thick like chowder. They walked without exchanging a single word.
The neighbourhood reminded her of where they lived when they were first married. Those traditional double-bricked homes with manicured lawns and rose gardens behind every fence. The ideal place to raise a family, he’d told her. He was right, of course. Four children raised in a suburb not dissimilar to the one they were now visiting their disabled son. They conceived the twins after they moved in, and Cassie was born three years later. They couldn’t stop at three. It wouldn’t be fair. Their little girl needed someone to balance out the twins. Sam’s birth completed their family. Cassie adored her baby brother. Everything was going to plan until they noticed he wasn’t developing as the others had. They didn’t worry too much. Everyone they knew had a lot of opinions on boys’ development, especially when they were the babies of the family. By 14 months, there was still no speech. He didn’t make eye contact and didn’t seem to hear them or even notice they were in the room. It was easy to make excuses for his behaviour at the beginning; then the differences between his peers and older siblings were just too huge to ignore after a while.
Thinking back to that first day when the paediatrician had sat her down in a small white room that smelt of antibacterial soap, she realized how naïve she’d been. Once she’d settled in her seat, he had destroyed her with one sentence. “We’re looking at severe autism with significant developmental delays.” She had stared at the man’s face and waited for the offer of hope that never came.
Instead, they got years of behavioural therapy, which seemed to do nothing except drain their bank account. They had muddled through, of course, and made sacrifices. There were some good periods, and during those times, they had hope. The future always seemed brighter during those times. One year, they went without a single act of aggression. The calm before the storm, one of the twins had remarked. She’d been happy that year. They'd all seemed happy during that short period, but like most things, it didn’t last.
Her husband fidgeted in his coat pocket while rattling his car keys in his trousers.
“They’ve been giving him lollipops again. There were sticks and those little square wrappers under his bed last time I visited,” she told him.
“Is that so bad? They calm him down and bring him a bit of happiness.”
“But I’ve asked them not to. Sam will get cavities, and you know he can’t risk getting any. I’ve got him this far. It’s the least they can….”
“That’s not your concern any more. You must let go,” he said.
It was raining and having no umbrella, she felt validated by her preconception of the day turning into a disaster. As they approached the entrance of the Care Home, she wondered what else could go wrong. There they waited in the reception area, where the air was redolent of disinfectant. She always hated this moment. The wait and anticipation of how the visit would play out. The large double-bricked home, redesigned to allow for the fact it was now a business that cared for young adults with high-support needs, always made her feel cold and detached, although the solid walls surrounding her provided some comfort and reassurance.
They heard him long before they saw him. Thumping down the hallway with his favourite carer (his poor grimaced face splattered with acne, as he pressed the side of his body along the wall) to greet them. He’d been alright, she told them, but he hadn’t slept well last night, so he may behave erratically towards them. Erratic behaviour is how they came to find themselves here, and she felt wounded at finding herself in this situation, where someone else was in control of the narrative.
“Look who’s here, Sam said his aide, Should we bring your parents into your room?”
“IS HERE SAM.”
After the greyness of the day, his room was lit up like a lighthouse. It was not congruent with the rest of the care home. They’d made sure of that the best they could by filling his space with all his favourite things from home. In the corner was a basket of sensory toys and what looked like confetti, which they had not bought him, sprinkled across the floor. As if this were a daycare centre and not the bedroom of a teenager.
“Happy Birthday, Sammy,” she said.
“BIRTHDAY,” said Sam.
“BIRTHDAY, BIRTHDAY, BIRTHDAY!”
Over the years, people said her son’s echolalia would develop into functional speech. It never did.
“Here, mate, Happy Birthday,” he said, passing him the unwrapped bag of spinning tops.
Sam stopped pacing the room, walked over, and took the bag without looking at his father. They watched as he emptied the contents onto the carpet and stretched his six-foot frame down to his eye level of the spinning tops. Running his fingers over each one, lining them up in a row before moving to spin them at the same time. Over the years, she’d met many parents of kids with high-functioning autism. Kids at the complete opposite end of the spectrum from Sam. She’d always held onto a little high-functioning envy and would wonder where all the kids like Sam were. Were they locked behind closed doors, shut out from society? Or did they even exist? People would express their sympathies. The standard census being that there must be no greater hell than having a son locked in his world. She hoped, of course, he was euphorically unaware of what he was missing. And most of the time, that’s exactly how it appeared. Only, just sometimes, she saw signs that contradicted that hope and those times gave her the deepest heartache and fear that gripped her throat. Moving towards him, she bent down on her knees before lying on the floor opposite him. The only thing separating their faces was the perfect row of spinning tops. As he met her gaze, she thought she saw a glimpse of something… then it was gone; his intent was securely back on the spinning colours of stimulation. She reached out to touch his cheek before stopping herself. A light touch could set him off.
When it was time to leave and say their goodbyes, Sam remained fixated on the spinning tops. It wasn’t until they were about to open his door did he change what he was doing.
“Home! Home! Sam, go home!”
Sam was up, pacing the room, making the sign for home with his hands. She turned her back to him and stared at the open door as her husband approached their son with the serenity of a Buddhist priest.
“You are home, mate, he said. Remember, this is Sam’s home now.”
Looking at his father’s face for the first time, Sam relaxed.
Without waiting for further confirmation, he returned to the floor and his spinning tops.
She waited for her husband under the shelter, outside the care home, before letting him take her arm in his. Like most things, the weather had betrayed her that day. Glancing down at her hands, she flinched at the sight of her swollen veins and ran her finger over the long silver scar. A reminder of her choices. Her mind and body were colluding. Tears were brewing and threatening to spill. She wasn’t sure she was strong enough to keep up the fight. What she wanted to do was continue picking at that hole in her world and escape for good. That was silly of course and impossible. She wondered what kind of mother this made her. Looking for justification for her choices, waiting for reassurance to abate the grief. That was futile of course, she had no control over grief. Each time she thought she’d had it beat, it wrapped itself around her ankle, slithered up and punched her square in the gut.
“I’m sorry I didn’t think to pack the umbrella.”
“You weren’t to know.”
As if noticing the slight tremor in his wife’s hand, her husband reached into his pocket and pulled out an orange lollipop. The warmth of his hands cocooned hers as he placed the lollipop into her palm. Shifting her glance, she noticed a tenderness in his eyes she’d long forgotten to look for. As if resigning herself to the idea, she unwrapped the lollipop and placed it into her mouth. Taking his arm for the second time, they made the four-block journey back to the car in silence.