The Harsh World of Autism Parenting

The story of Patricia Ripley, the Florida woman accused of killing her 9-year-old severely autistic son, Alejandro, is doing the rounds in the autism community around the globe. 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 accomplished her mission. Her husband is standing firmly by her, saying she is a good mother and a wonderful human being, who cannot have murdered her son. I will be following that story with keen interest, but as with many court stories, we might never really know the absolute truth. As I was reflecting on this story, Facebook just sent me a reminder to a 2010 post I wrote, the day I almost became another Patricia Ripley. 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 on that day, and up to now I have no idea what had come over me.I was feeling very lost because Victor was extremely difficult, with endless meltdowns, probably caused by the inability to speak. I was terrified of going out of the house as there was no telling when his spectacular tantrums would surface. He would attack me -scratch and pull out my hair, or roll on the ground, sometimes on busy roads or in supermarkets. On many occasions, I deserted my groceries at the till and dashed out of supermarkets when his meltdowns started. This, no doubt, drew a lot of unwanted attention to ourselves, and with that a lot of unsolicited advice from those who felt my parenting skills were wanting. Neighbours from our apartment building constantly complained about his loud screams, and one even came to my door to tell me she would report me to the police 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 and always had a quick apology at the tip of my tongue. 

At that time, I had no support whatsoever, as I had just relocated to South Africa. I made efforts to tell loved ones that I was really not coping, some said there was absolutely nothing wrong with Victor, while others reminded 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 of them oozing pus because they were deep. My son was the only autistic person I knew, and I wallowed in self-pity and despair, seeing no hope for him and myself. I tried to find a crèche for him to go to, so I could have a few hours to myself for recovery. The first three I approached said they couldn’t take him in if he was non-verbal. Yes, they had baby classes, but my son was 4 and they didn’t accept kids that age who didn’t speak. 

The general practitioner who we consulted, thinking Victor just needed to be referred to a speech therapist, was the first person to mention autism before referring us to a specialist paediatrician. He said he was not qualified to make an autism diagnosis, but highly suspected it. He, however, felt qualified enough to tell me that 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 be screaming like this and attacking me like he was possessed. It strongly felt like the death sentence had been handed to me.

I remember telling someone that I was convinced I'd die at the hands of my son. He had the strongest punch, even though he was only four years old; what would happen when he was 14? And what chance did a person with the intellectual disability described by the doctor stand in this harsh world where people are judged by their academic, or other, accomplishments? I was in emotional and psychological quicksand. The paediatrician we had been referred to had placed us on a long waiting list, and while we waited, life continued. Badly. I would be taking care of my son during the day, and at night I'd stay awake crying and reflecting on my predicament. Eventually, I went back to the GP so that I could get assistance for my stress and insomnia. He wasn't there, and his partner attended to me. I explained everything I was going through, and he said, "So is this autism curable?" I immediately realised this doctor was of no use to me. All he did was give me sleeping tablets to take at night.

I remember the sense of calm that engulfed me when I got home and took out the sleeping tablets from my handbag. Now I’d be able to sleep. I could even sleep forever. With my son. If I slept and never woke up, what would become of him? Who would look be able to put up with his incessant meltdowns, when his own mom couldn’t? Would they feed him? We would go to sleep together. I thought of my parents and how they would be devastated by my decision, but I felt this was my problem. I was the one that knew where the shoe pinched most, and I was the only one that could solve that problem. I felt trapped. Then I wrote that post.  Some people laughed, some cracked jokes about that post, not knowing I had my weapon of self-destruction by my side. Others said I needed to pray, like I hadn’t tried and discovered the futility of doing so. The doctor had categorically stated autism was a lifelong condition, and that my son could never learn a thing in his life. How would prayer change that? At the age of 4, he had never said “mom” because he couldn’t speak. I felt I had been dealt a bad hand, and the sleeping tablets increasing looked like an attractive solution. To cut a long story short, immediately after my post went online, my aunt sent a fervent prayer to my inbox, even though she didn’t even know what was dragging me down. A high school friend I hadn’t spoken to in years also reached out, and went on to have several long conversations about what I was going through, and how she had also overcome some serious struggles. I flushed the sleeping tablets down the toilet. When I see suicidal posts on my timeline, I don't dismiss the authors as attention-seekers. Seeking attention for a big problem you have is not a bad thing. It beats quietly taking drastic measures, any day. 

I condemn what Patricia Ripley did to her son. (I also condemn that she lied that two black men had abducted Alejandro, but that's a discussion for another day.) She might have been able to walk away from the canal she drowned her son in, but will she ever walk away from the distressed cries of her dying son? I will never understand how a mom would choose such a horrible way to get rid of her son. I will never understand because I don’t know what made her snap. Alejandro was non-verbal and was still wearing diapers at 9. That cannot have been easy for Patricia. Other moms are running around going for soccer practice and having conversations with their kids of the same age, and all she had to do was change soiled nappies. What hope was there that one day he would be toilet-trained? If he lived to be 40, would his mom have continued changing his diapers? Keyboard warriors are baying for her blood. 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 go for assistance. Easy to say when you’re hitting keys on your laptop, without an inkling of her daily struggles. I don’t know her journey with Alejandro, but I know what autism can do to a mum's psyche. Something must have snapped. I wish she hadn’t gone that route. I’m dreadfully sorry that Alejandro’s last minutes on earth were so horrific and lonely.

I shuddered and cried a little when the Facebook reminder popped up, a reminder of how at some point I also almost made a terrible judgment call. At 14, Victor is now a strapping young lad, and the aggression and meltdowns are a thing of the past. Now he talks like his life depends on it, probably making up for lost time. I always playfully threaten to sew his lips together to stop him from talking, but deep down, I’m grateful he can speak now. He has amazing manners – always says, "Thank you, mom, for the food," jumps to clear the table after meals and even sometimes does the dishes (which I redo when he’s not watching). After I’ve worked hard to clean the house, he comes to say, “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 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 now, and will fight on.  Regardless of his condition, he has his place under the sun, and no-one, except God, should take that away from him.  I’m that mom teachers never forget. When Victor 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 show up all the time. I take an avid interest in everything that concerns him. The doctor had it  all wrong.Victor can learn! He types, spells and reads well, and has spent the whole of lockdown teaching himself to write. And what strides he has made! I wish I had been able to meet Patricia Ripley before the tragedy. I'd have wanted to tell her it won't always be this bad. Hang on! There is no assurance she would have listened to me.

I don’t wear the autism mom tag like it’s a badge of honour. If anything, it’s the biggest heartbreak of my life. I’ve heard people say, “Oh, God gives special kids to special parents.” All I want to tell them is, “You know what, you could have just kept quiet.” As far as I’m concerned, 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 that we are failing our children. Every mom wants to provide solutions to her children’s problems, but we can’t solve autism, regardless of how much we might pull out all the stops. It’s the story of many parents walking this journey, especially in Africa. But Alejandro’s story shows this is a universal problem. Being an autism parent is a cross some of us have to carry. For life. And we are human beings 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 I’d recuse myself from if I were a judge.

Sexual and Reproductive Health Plays Second Fiddle to COVID-19 Pandemic

The advent of COVID-19 has sent many issues that used to be of paramount importance to governments and organisations sent to the back burner. There are growing concerns that after the battle against coronavirus is won, whenever that’s going to be, there will be new fires to put out. The United Nations has sent out an ominous warning that the next pandemic in line is in mental health. This is due to high anxiety levels precipitated by coronavirus, and other spin-offs such job losses, closure of schools and social distancing measures leading to seclusion.

In the Kingdom of Eswatini, it is feared another crisis of sorts is also growing in the wings of the raging pandemic. On Thursday, May 14^th, SafAids hosted a webinar where civic groups and adolescents discussed sexual reproductive health rights (SRHR) during lockdown. Panellists concurred that while it was essential to place the country on lockdown to curtail the spread of COVID-19, the move had the unwelcome impact of hampering access to sexual health services such as contraceptives, condoms and treatment, by young people. Travel restrictions would demand that these young people explain their movements to authorities whenever they need to access services. Faced with such a daunting task, it becomes easier to just forego the required services.

Before lockdown, there were platforms for relevant civic groups to engage with young people, but with social distancing measures banning public gatherings, these have been put on hold.  Safaids Social Accountability Mentee, Sikhulile Hlatjwako said there were groups still operational on social media. However, considering the high cost of data, coupled with a high unemployment rate among young people, not many would be able to participate in these groups, or benefit from them. The coronavirus pandemic has also dealt young adults who earned an income through informal employment a big blow, making it even harder for them to afford transport to places where they would have been comfortable obtaining sexual health services.

Hlatjwako also touched on an issue that has become a global concern -  sexual abuse during lockdown. Many women and children are currently locked up with their abusers. While governments have their eyes on flattening the coronavirus curve, the rape scourge is unfolding.  Research has shown that many cases of child sexual abuse are perpetrated, more often than not, but people closely related to the children or even staying under the same roof as them. Hlatjwako urged guardians to pay attention to their children if they expressed concerns around particular individuals, and be prepared to have discussions around sexual abuse with their children.

With a great degree of uncertainty surrounding the 2020 academic year, many school-going children could find themselves sitting at home with not much to do for months on end. Many schools around the world have adapted to online learning, but in a country like Eswatini, this remains a pie in the sky for many.  Ministry of Health SRHR Coordinator Zandile Masangane said too much idle time and a great sense of helplessness increase the chances of young people wanting to “steal sex”. The current state of affairs, therefore, makes it more urgent for provision of reproductive health services to  be considered an essential service, or else the country will have a huge fallout of unplanned pregnancies and a higher HIV infection rate. This issue would be an easy one to dismiss, especially for conservative parents, but it is actually a life or death situation.

According to UNAIDS, Eswatini had 210,000 people living with HIV, with an adult prevalence of 27,3%, as of 2018. There were 7 800 new infections recorded. The kingdom has been lauded for making impressive strides in HIV testing services and the provision of free antiretroviral treatment. It would be interesting to track how the shift of focus to the coronavirus pandemic and the subsequent lockdown will impact HIV statistics.

Safaids Country Representative, Mandisa Zwane-Machakata applauded government efforts to deal with the threat of COVID-19, but added that there should be no regression in SAHR service provision. She pointed out that information on delaying the onset of sex should still be given, albeit without allowing those children choosing to indulge to fall through the cracks.

Young people in Eswatini (unrelated to the story)

There was consensus among panellists that if ever there was a time for parents to roll their sleeves and get their hands dirty as far as discussions on sexual and reproductive health are concerned, it is now. There is not much such discourse happening, particularly in the African context, but parents need to open up to conversations on sex with their children, considering other channels of communication have stalled as a result of the coronavirus. Masangane said children could easily access information on reproductive health from other outlets, but it would be best if they got it first from their parents. She called for a further similar engagement to be organised, but this time with a focus on empowering parents on how to broach sensitive discussions with their children. A contributor, Ken Makhanya asked for assistance for parents who would like to engage their children but do not know where to start, “We’ve literally shifted responsibility to schools and [civic society organisations],” he said. Machakata said the current scenario provided an opportunity for society to go back to basics and forge relationships with their children. She implored parents to seek the right information from organisations such as WHO, so that they are better equipped to guide their children through growth phases.  An organisation called Khulisa Umntfwana has also availed itself to help parents with the necessary information during the pandemic.    

What stood out for me as I listened to contributions to this webinar was how the Eswatini narrative could fit anywhere else in Africa. Before coronavirus started wreaking havoc on the continent, most governments and organisations on the continent were focused on improving adherence to antiretroviral treatment among those living with HIV. The 90-90-90 target now appears to be a thing of the past as resources are channelled to the fight against COVID-19. Parents around the continent have also suddenly found themselves saddled with having to wear many hats at the same time, with no teachers and organisations to pass the buck too. One thing for sure is we all need to be tightening our belts and brace ourselves for the coronavirus aftermath.

Drawing Strength from Yourself

I saw a post on a friend’s Facebook timeline that stayed with me. Her name is Naomi Shoko, and she regularly posts messages of upliftment. But of all the things I’ve read from her, this one struck a chord. She said, “Have you ever been in a situation where you have no-one to encourage you when you are in need of encouragement? May God remind you of the very words that you spoke and strengthened someone …. It is possible to draw strength from words of life that came from you at one time. Be encouraged to encourage yourself.”  

Excerpt from Naomi Shoko's post

Naomi’s message resonated with words that I spoke to a friend who had suffered a significant material loss. She and her husband intended to buy a car, but were conned of R90,000. Her pain was so raw that she could not even explain what had actually happened. “Maybe another time,” she said.  With only a small percentage of the story to work with, I still had to comfort her. My words to her were, “Sometimes there are hard lessons in life. When I get into a situation like that, I tell myself that because I’ve lost so much, I’ll be more careful in future dealings. Some have lost their lives in bad deals, but as long as your heart is still beating in your chest, it means there’s still tomorrow, and with it comes a chance to do better.”

And here I am sitting and typing this after 1 am, in a state of disquiet over a particularly disturbing chain of events that has left me feeling short-changed. My message has come flooding back to me, and I feel I could have been talking to myself when I spoke to the friend that was ripped off. What this shows me is that sometimes you might think you are helping or ministering to someone, when in actual fact you are ministering to yourself. (I guess the same goes for when you think you were being nasty to someone and then one day you realise you were actually shooting yourself in the foot).

Going back to the message, if it’s one that God would like you to hear, it will pop up from other corners too. Today I was checking my contacts’ Whatsapp updates, and came across my nephew Brandon’s post.

Brandon's Whatsapp status

It was a popular quote by Jon Sinclair, “Failure is a bruise. Not a tattoo.” Brandon added, “You are still young, even if you’re old, you are still alive. The chance to try again is there.”

And it is there. Tomorrow brings with it a chance to do better, watch your back, grow eyes at the back of your head, connect better with God, be your own knight in shining armour, whatever it takes to keep your head above water. Do whatever it takes not to fall into the same trap twice. And do whatever it takes to get out of the entrapment you might have fallen into. It doesn’t matter if you walked into it with your eyes open or you were hoodwinked into it. The important thing is to get out. And as they say, the journey of a thousand miles begins with the first step. Take that step. One foot in front of the other until you get to the destination you yearn for. 

Not a long enough post for someone who has had a long hiatus as I’ve done, but the message is an important one, even if I say so myself. I know I'll come back to it time and again, and I hope it will hit the right note with someone else who might pass by this street.