The Harsh World of Autism Parenting

THE story of Patricia Ripley, the Florida woman accused of killing her nine-year-old severely autistic son Alejandro, is doing the rounds in the global autism community. I am a part of that community as my 14-year-old son is autistic.

When I read that story, I had chills down my spine, wondering how things had gone so bad that Patricia allegedly shoved her son into a canal, not once but twice, until she had accomplished her mission. Her husband is standing firmly by her, saying she is a good mother and a wonderful human being who could not have murdered her son. I will be keenly following that story, but as with many court stories, we might never really know the absolute truth.

As I was reflecting on Ripley’s story, Facebook reminded of a 2010 post I wrote the day I almost became another Patricia. On one particularly bad day, I posted the message on the screenshot on Facebook. Normally I never post intimate issues on social media, but I did that day and still have no idea what had come over me.

I was desolate because Victor was extremely difficult; with endless meltdowns probably caused by his inability to speak. I was terrified of leaving the house as there was no telling when his spectacular tantrums would surface. He would attack me – scratch me, pull my hair or roll on the ground, sometimes on busy roads or in supermarkets. On countless occasions I deserted my groceries at the till and dashed out of the supermarkets as his meltdowns started. This, no doubt, drew unwanted attention and unsolicited advice from people who judged my parenting skills.

My neighbours constantly complained about his loud screams – and one even came to my apartment saying she would report me for child abuse. Why was my son always wailing like that, that wasn’t what happy kids with good parents did? I was always on the verge of tears with a quick apology on the tip of my tongue. I also had no support system as I had recently relocated to South Africa. I had attempted to tell loved ones I was not coping – only for some to say there was absolutely nothing wrong with Victor, and others reminding me to be grateful God had blessed me with a child.

“There are many out there who would give anything to have the child you’re complaining about,” they said.

All I had were ugly scratch marks all over my hands and neck, some oozing pus from their infection and depth.

My son was the only autistic person I knew and I wallowed in self-pity and despair without hope for either of us. I tried finding him a crèche to give me a few hours’ respite, but the first three said they couldn’t accept him if he was non-verbal. They had baby classes, but my son was four and they didn’t accept kids that age who didn’t speak.

It was the general practitioner we consulted, thinking Victor just needed a speech therapist, who first mentioned autism before referring us to a specialist paediatrician. While not qualified to diagnose autism, he highly suspected it. However, he felt sufficiently qualified to say because my son was autistic, he didn’t even know I was his mom and would never be able to learn. That proclamation sent me off the rails. I struggled to live with the fact that my son would always scream and attack me like he was possessed. I felt I had been handed a death sentence. I remember telling someone I was convinced I’d die at my son’s hands. Despite his tender age, he had the strongest punch; what would happen when he was 14? What chance did a person with the intellectual disability the doctor had described stand in this harsh world where people are judged by their academic, or other, accomplishments? I was in emotional and psychological quicksand.

The paediatrician placed us on a long waiting list and, while we waited, life continued. Badly. I cared for Victor during the day and stayed awake crying and reflecting on my predicament at night. Eventually, I returned to the GP to get assistance for my stress and insomnia, but he wasn’t there and I had to see his partner.

I explained everything, after which he said: “So is this autism curable?”

All he did was prescribe sleeping tablets.

I remember the sense of calm that engulfed me when I removed the tablets from my handbag. Now I could sleep. I could even sleep forever. With my son. If I never woke up, what would become of him? Who could handle his incessant meltdowns when his own mom couldn’t? Would they feed him? No, we would sleep together. I thought of how devastated my parents would be by my decision, but felt this was my problem. I knew where the shoe pinched most and was the only one who could solve the problem.

I felt trapped. Then I wrote that post.

Some people laughed; some cracked jokes ignorant about my weapon of self-destruction close at hand. Others said I needed to pray, like I hadn’t already tried and discovered the futility. The doctor had categorically stated autism was a lifelong condition and that Victor could never learn. How would prayer change that? I was angry at the world. As a four-year-old, Victor had never said “Mom” because he couldn’t speak. I had been dealt a bad hand and the sleeping tablets increasingly looked like an attractive solution.

Then, immediately after my post appeared online, my aunt emailed me a fervent prayer even though she didn’t know what was dragging me down. A high school friend I hadn’t spoken to in years also reached out and we had several long conversations about my circumstances, and how she had also overcome some serious struggles. I flushed the tablets down the toilet. When I see suicidal posts on my timeline, I don’t dismiss the authors as attention-seekers. Seeking attention for an overwhelming problem is not bad. It beats quietly taking drastic measures, any day. 

I condemn what Patricia Ripley did to her son and I condemn she lied about two black men abducting Alejandro, but that’s a different discussion. She might have been able to walk away from the canal in which she drowned her son, but will she ever walk away from his distressed cries as he died? I will never understand how a mom would choose such a horrible way to get rid of her child. I will never understand because I don’t know what made her snap. Alejandro was non-verbal and still wearing diapers at nine. That cannot have been easy for Patricia. Other moms are juggling soccer practice and work commitments while conversing with their nine-year-old kids, and here was Ripley still changing soiled nappies. What hope existed that one day Alejandro would be toilet-trained? If he lived to be 40, would his mom still be changing his diapers?

Keyboard warriors are baying for Patricia’s blood, claiming she should burn in hell. Whatever the circumstances, she had no right to play God. She could have sought help from social workers. The US has a stronger support system than Africa, so she should have known where to get assistance.

These are easy statements to make when merely hitting keys on your laptop without an inkling of understanding about her daily struggles. I don’t know the full story about her journey with Alejandro, but I know what autism can do to a mother’s psyche. Something snapped. I wish she hadn’t gone that route. I’m dreadfully sorry Alejandro’s last minutes were so horrific and lonely.

I shuddered and cried a little when the Facebook reminder popped up – a reminder of how I also almost made a terrible judgment call. At 14 Victor is now a strapping young lad and the aggression and meltdowns are history. Now he talks like his life depends on it, probably making up for lost time. I playfully threaten to sew his lips together, to get a break from his endless chit-chat, but deep down am immensely grateful to hear his voice. He has amazing manners – always says, “Thank you Mom for the food”; jumps up to clear the table and even sometimes does the dishes (which I redo when he’s not watching). After I’ve worked hard cleaning the house, he says: “High five Mom, good job cleaning the house!”

I’m never short of compliments when he’s around. “Nice weave, Mom. Nice blue dress, Mom.” When I sneeze, he dashes off with the speed of lightning to fetch tissue, even if I don’t need it.

As he grows, new challenges crop up, but I’m in a better frame of mind and will fight on. Regardless of his condition, Victor has his place under the sun and only God should take that away. I’m that mom teachers never forget. When he comes home with unexplained injuries, I go to the school to get explanations. When the school calls for parent-teacher meetings, I’m there like a bear. I’ve heard some dejected mums say: “What’s the point? There aren’t any new improvements to discuss”, but I will always show up. Even if it’s to discuss the lack of improvement. I take an avid interest in everything concerning him. The doctor had it wrong. Victor can learn! He types, spells and reads well and has spent the whole lockdown period teaching himself to write – and what strides he has made! I wish I could have met Patricia Ripley before the tragedy. I would have told her, “It won’t always be this bad. Hang on!” There is, however, no assurance she would have listened.

I don’t wear the autism mom tag like a badge of honour. If anything, it’s my life’s biggest heartbreak. I’ve heard people say: “Oh, God gives special kids to special parents.”

All I want to respond is: “You could have just kept quiet.”

That statement is a crock of bull. There’s nothing special about being an autism mom except that tragedy befell us. What makes the condition tragic is the non-availability, or inadequacy of resources to help our children, and the constant feeling we are failing them. Every mom wants to provide solutions to her children’s problems, but we can’t solve autism regardless of how hard we pull out the stops. Numerous parents walk this journey, especially in Africa, but Alejandro’s story demonstrates this is a universal problem. Being an autism parent is a cross some carry – for life. More importantly, we are humans who sometimes buckle under pressure, as did Patricia Ripley.

I don’t in any way condone the route she took, even though she believes her son is now in a better place. But I will not be standing with those baying for her blood and screaming: “Nail her on the cross!”

It’s one case where, as a judge, I would recuse myself.