Quest to beat the odds

 My daughter turns 7 later this month and has been creating more hype and campaigning for her birthday more aggressively than Donald Trump has been doing for the US elections. Her wish list keeps growing by the day, and at every turn she reminds me of the many times I’ve had to work odd or long hours, leaving her in tears but assuring her that I work hard so that I can buy her everything she wants. Well, now there’s a growing list of everything she wants – and she wants everything. A tutu dress with wings and rainbow colours, accompanied by an Alice band with a horn that looks exactly like her toy unicorn, Rainbow (which I was arm-twisted into buying), a trip to Sun City, a spa day for the two of us, a party where a number of friends will be invited, a “ginormous” Barbie cake in strawberry flavour…and…and…and. This girl will leave me impoverished!

I love birthdays, and my daughter could be a little OTT, but the apple didn’t fall far from the tree. Everyone close to me knows that my birthday cannot just pass like the wind because it is a big deal. I fall short of writing down a list of people who neglect to wish me a happy birthday on Facebook so that I can commit their names to memory and remember to also ignore their birthdays, or better still, not ever hit the like button on any of their posts. That’s a joke. I make a big deal of loved ones’ birthday too, and try to ensure they feel special on their own birthdays. For me, birthdays signify a new beginning. As a believer, it means God has kept me hanging around for one more year, and is giving me another chance to enjoy life, right my wrongs and find my purpose in life.

There's, however, one birthday that leaves me quaking in my boots, and it’s my son’s. Victor has autism and will be turning 15 in January. 

My sense of panic is escalating as the years go by. On the eve of his birthday I usually stay up late and say a prayer for him with a lump in my throat and a tear or two in my eyes, wondering what his purpose in life will ever be in a world where a high school pass and a tertiary qualification determine your success. 

Every new birthday is a reminder that I need to do something to secure his future and ensure he is a contributing member of society, but I don’t know where to start given the weaknesses in our education system. At 15, we are at a stage where there needs to be a plan in place for his transition into adulthood, more so because he is not in mainstream school where there are specific stages for everything. 

For neurotypical peers there are no worries because they still have to sit for matric, and decisions will be made thereafter. But with him and others in the same shoes, arrangements have to be made now. If he is to learn a trade, it should be done now, so that there’s enough time to seek out the skill and nurture it for a number of years, considering his cognitive abilities are underdeveloped. 

Government makes the right noises about the availability of schools for autism, but on the ground there really isn’t much happening. Many parents are at the end of their tethers not knowing what to do with their autistic children. Private school fees, where skills are reportedly taught, are up the roof and out of the reach of many, while public school standards are down at the bottom of the barrel.      

Victor will turn 15 soon and I'm yet to find what I consider a proper school for him. How ridiculously sad is that? In 2017 the Department of Basic Education reported that almost 10,000 children with special needs were still waiting to be placed in school. The figures can’t have changed much over the past three years; I’m not too hopeful on that front. 

My focus is now on ensuring that Victor learns a life skill, at least, in a world where a high school pass and a tertiary qualification determine your success.  I don’t know where to start, but I’m not static! One night when I had worked myself up into a near-panic attack, I reached out to my small network of autism parents about what we should do as a collective to secure our children’s future. I should have kept my worry to myself. Invariably the responses, across races, were of resignation, “Oh Charlotte, let’s just be glad for the small victories and not be too hard on ourselves, there’s really nothing to be done. The only thing we can actually do is pray that we outlive our children so that we can keep looking after them. Without us they’ll be on the streets picking food from rubbish dumps. Let’s just pray without ceasing, let’s be on our knees all the time.” Suddenly I wished we’d had a face-to-face meeting. Not for us to cuddle in our combined despair, but for me to give them noogies for giving up. I don’t want to be on my knees all the time, praying without ceasing. I want to be up on my feet hitting the ground towards a goal, or at least pacing up and down trying to come up with solutions. Even the good book says there is a time for everything, so there should be a time to pray, and a time to trust God to have your back as you act.

Our children risk falling through the cracks if there’s no intervention. The pain of seeing Victor’s age mates move from one stage to the next is one of its own kind. People in the autism community say we should never compare our children with ‘normal’ kids because we’ll only break our hearts. “Let’s focus on our kids’ strengths and small victories instead,” they say. But the comparison is inevitable. Without the right support, the strengths will not be of much use. I don’t want my son to just be known as that autistic boy or man who’s a whizz at reading, typing, spelling and trivia, but amounted to nothing because his mother gave up on him. For me, the comparison is a jab on the side that I need to do more for my son and other children. That jab sent me to nominate myself for election in the Autism South Africa’s National Executive Council in a bid to be close to the think tank, where challenges are presented but have to be accompanied by solutions, not pity parties. My two-year term begins this month, yay! Some in my circle are in awe of my perceived strength and energy to turn the tide. I can’t turn it, but I hope to be comfortable manoeuvring in it. I call it perceived strength because I’m not always strong. Sometimes I am that mom who tells herself she can trample snakes and scorpions, break down all barriers in her path to ensure her son emerges the victor, as he’s aptly named. Then there are those moments when I just want to buy a bucket of ice cream and box of tissues and ugly-cry in resignation, because the chances of my child and others like him attaining any degree of independence will remain a pie in the sky because of the odds that are stacked against us.

By joining Autism South Africa, I do strongly feel I’m on the right path. I hope to bring positive change to the organisation and raise awareness in the community and government structures. African governments need to know that not providing the right support for people with special needs is a liability on their part. Investing in vocational training, on the other hand, is not flushing money down the toilet, but a good investment in better futures for everyone concerned. People with autism and other cognitive disabilities will forever be tied to their mother’s apron strings and be a burden on families and state coffers for all their lives, having to be catered for through social grants. Sometimes they even impede their parents from working because of challenges they present. Isn’t it better to teach them to fish and feed them for life than give them a barely fulfilling fish once in a while? They might have challenges, but not all of them are insurmountable. They, like everyone else, need self-actualisation. One day Victor said to me, “Mom, will you visit me at my apartment and see my Audi?” In his innocence, he actually sees himself leaving the nest and having his own life away from me, but how do we get him there? Whether I’d actually allow him to leave my side is a story for another day, but I need to fight with every fibre in my body to ensure he has equal access to resources like any other human being. It’s all up to me. There’s no knight in shining armour coming our way.

When the Protector Becomes the Predator

 One of the most topical issues in the news this past week was the alleged police shooting incident that killed a 16-year-old boy with Down Syndrome in Eldorado Park, Johannesburg. According to Nathaniel Julius’ family, the police had tried to ask him questions, which he failed to respond to owing to his disability. As with many stories of this nature, many versions will come out of the woodwork, making it harder to tell fact from fiction. What is constant, however, is that an unarmed boy with a disability was gunned down.

The late Nathaniel Julius

As a mother to a teenager with autism, the incident hit close to home and completely ruined my day. So many questions buzzed in my head, like for instance, how did the cops not see obvious signs of Down Syndrome on the child, who gave the policeman who pulled the trigger the authority to be judge, jury and executioner? Even if Nathaniel had the capacity to speak for himself, the very first Miranda Right is the right to remain silent. No-one ought to be executed for failing to answer questions. The possibility of such a horrible incident happening to my son, Victor, makes me quake in my boots. If a young man with visible signs of a developmental condition can wantonly be gunned down like that, heaven help those that look ‘normal’.

My greatest fear comes from the knowledge that Victor would be a perfect candidate for the kind of atrocity witnessed in Eldorado Park. Although he can speak, he is not always articulate, especially in situations where he feels apprehensive. If confronted by the police, he is not likely to co-operate. He would probably have an epic meltdown, or probably just walk away, which in turn would provoke the officers, who might view this as an act of defiance. Autism does not have tell-tale signs, unlike Down Syndrome. I view it as an advantage because people stare at and taunt those that look different, which can make public life very uncomfortable for people with visible disabilities. However, in light of potential police brutality, the lack of discernible signs can actually work against him. People expect him to function in a certain way, and are always shocked when he doesn’t. Because he is very tall and looks mature, I’ve had vendors or sales people enthusiastically try to sell their products to him, whereupon he just gives them a blank stare or will quickly cling to my arm so that I can intervene. The thought of him being surrounded by gun-toting aggressive policemen makes my blood run cold. I invest a great deal of time in resources to help him become an independent and contributing member of society one day. But with the constant threat to his life caused by a lack of awareness on intellectual disabilities or sheer cruelty, he’s condemned to always being tied to my apron strings for his own safety. That is not fair.

I have read many news stories and accounts of people with intellectual disabilities being harassed, unjustifiably arrested, or killed by the police, particularly in the United States.  To have this in our own backyard, where the spirit of ubuntu is hyped, is both petrifying and disconcerting. They say it takes a village to raise a child. It is every society’s duty to look out for its vulnerable. Well, this village of gunslingers failed Nathaniel and the whole community of people living with disabilities. It instills great fear to know that those that are meant to protect and serve communities have turned into a lynch mob. In discussions on social media, some people have posited that Nathaniel’s disability should not be the focal point; society should just be outraged about the killing of an innocent boy. In my opinion, the disability is very much a part of the narrative. It is well documented that people with developmental disabilities are disproportionately susceptible to acts of violence. This has been attributed partly to their incapacity to protect themselves and obtain assistance within the justice system.

The killing of Nathaniel has shown that parents whose children have special needs and relevant organisations have their work cut out for them. A lot of advocacy is needed to ensure that the vulnerability of people with disabilities is eradicated, more so within the justice system. To some, people with disabilities might appear as if they should be banished to the periphery of life, but where they come from, they are loved. They have names, because they are real. They have their own seat at the dinner table. There is now an empty chair at Nathaniel’s house and his family is distraught.

This inexcusable incident has shown gaps in the policing system. How much training do law enforcement officers receive on handling people with disabilities? Or is that expecting a lot from people who appear to not even be conversant with the rules of engagement? I doubt that any amount of training can restrain a trigger happy and blood thirsty policeman.

Close shave

I BELIEVE my life was in danger recently.  Virtual races and challenges have taken the globe by storm due to the coronavirus pandemic, and I’m participating in a 300km challenge, initiated by my sister in Denmark. I try to walk approximately 5km daily. I decided to walk around 4pm. A few metres before I got home, I noticed a man in front of me, covering himself from the head with a dirty blanket. He appeared to be a vagrant. At some point, he stopped to adjust his blanket, and I felt as if he had looked at me as he did so. He dragged his blanket further down, such that it covered his upper face, then he wrapped his purple scarf around his face. Alarm bells started ringing in my head. I was asking myself if he was trying to hide his face in preparation to strike.  Then I thought, maybe I need to stop watching On the Case with Paula Zahn and all the Investigation Discovery programmes making me see danger everywhere, even when people are just trying to protect themselves from the cold weather. It doesn’t help that I work in the media, where the primary focus on the bad and the ugly is enough to get one unhinged.  I also reminded myself that profiling of any kind was unfair. Not everyone who appears down on their luck should be viewed as a thug and potential threat.

The man appeared to have somewhat slowed down after noticing me. I decided to pick up pace, he did too, but not enough to overtake me. I saw another man walking behind us, and felt a surge of relief that my tail would surely not pounce on me with another person in the vicinity. But that man appeared to be in a hurry and soon outpaced us. The man I believe was following me switched to the same side I was walking, and seemed determined not to overtake me. I felt, or imagined, his eyes boring into my back, and was relieved when I got to our complex. Sadly, load-shedding was underway and the electrical gate to our complex wouldn’t open. I was, however, sure the man would just walk on by, seeing I was now home. As I stood by the gate, something made me turn back, and there he was, all covered up by his blanket and purple scarf, with only the eyes showing. He was standing about five metres away from me, gazing at me. Then calmly, from behind his blanket, he tilted his head to sweep his eyes up and and down the road, probably checking if there was any person nearby. I checked too, and there was absolutely no one within sight. It was eerily quiet. Then out of nowhere, a car pulled into the driveway and stopped by the gate, intending to also get into the complex. As soon as the man saw I wasn’t alone anymore, he whispered, "I'll see you, neh?" and walked away.

 Days after the incident, I saw the man begging at an intersection

I was pretty shaken up when someone inside the complex opened the gate for the black car. I got in and just stood there gazing at it until it parked outside a house. I wondered whether to go after the occupants and say thank you for showing up when you did, and kiss their feet. Their arrival probably saved me from something catastrophic. Gender-based violence is at an all-time high in South Africa, and I could easily have become a statistic. Maybe not, but I believe we should always trust our instincts. When someone’s presence destabilises your spirit, don’t second-guess yourself.  We might want to be good sports who see the best in everyone, but there is no space for such toxic positivity in the world we live in. You need to constantly look over your shoulder because there is almost danger lurking in the shadows, especially for women. Not everyone we encounter has our best interests at heart. It is a depressing way to live.

 When I got inside the house, I was so relieved to see my children, and be back to safety. My daughter asked, “How was your walk, mummy?” I told her my walk was bad because I met a bad man along the way. In her innocence, she asked if I had taken a picture. When I said no, she ran and took a sheet of black paper and a felt pen, and asked me to draw him.

I told two of my friends about the encounter, and they all encouraged me to find a walking buddy. Unfortunately, I don’t have one. At the beginning of my walk, two ladies overtook me and they were chatting away. I remember feeling a wave of sadness for a brief moment, wishing I had someone to occasionally walk with. I don’t really mind my own company, and walking alone gives me the rare opportunity to reflect on my life and line my thoughts. Still, it would be great to have someone to call on when I need some company during my walk.

Today I woke up feeling ballsy and determined to walk again. It was cold and   windy, so I wore my warm clothes and got out of the gate, I looked up and down the road, and noticed there weren’t any walkers or pedestrians in sight. Everyone seemed to have developed cold feet due to the wintry weather. Seeing the road so quiet creeped me out as I remembered the unwelcome encounter from yesterday. With my tail neatly tucked between my legs, I went back into the house. He won.

PANIC-STRICKEN RAMBLINGS OF A FREELANCER

AS THE the coronavirus continues its relentless sweep around the globe, countries have been forced into lockdowns, in desperate efforts to curb transmission. The move, while saving lives, has had a devastating impact on economies, with millions of jobs getting lost. Stats SA's recent survey revealed the grim rise in the unemployment rate to 30,1%, and the figures did not take into account job losses emanating from the coronavirus pandemic. Just this week, I read with dismay about the folding of some News24 publications, hot on the heels of similar developments at Caxton. As a reader, this is sad news as I will miss my favourite magazines, but as a journalist, this is enough reason for me to tear my hair out as I watch the industry I love so much crumble to pieces. This is a severe threat to my own source of livelihood as my employment options are shrinking with every closing publication. My anxiety is through the roof.

Image from Shutterstock.com

The media industry is saturated. Tertiary institutions are churning graduates in their thousands, but where are the jobs? Are the new graduates going to come with all their youthful exuberance  to snatch bread out of my mouth? I am contemplating upskilling myself in order to stay relevant in an industry that's spitting out even the most seasoned of journalists. In my state of panic, I'm even struggling to decide on what new course to do, as everything is currently under threat! As a freelancer in a pandemic, there is also much uncertainty about what the future holds. I could wake tomorrow to find my sources of income have turned their back on me, at a time when no-one is hiring. I could wake up to find I have tested positive for COVID-19 and cannot go to work for weeks on end, which would be a major financial setback. The wolf would be camping at my door. The fear of getting infected isn't emanating from paranoia but acceptance of what could happen. I'm hoping for the best, that me and mine will be safe, but bracing myself for the worst so that I'm never caught flat-footed. I'm doing my best to pinch pennies, in case of any eventuality. Amid all this, I still consider myself blessed because I'm still talking about the possibility of losing my job, meaning it hasn't happened yet. Many people in South Africa have already been shown the door,and are battling to keep their heads above water, with not many options lining up for them. Retail group Massmart is in talks with unions to cut almost 2,000 jobs at Game Stores. These aren't just statistics, but human beings with bills to pay and mouths to feed. Thousands of lives will be impacted. Business for SA (B4SA) has predicted that four million jobs could be lost in 2020.With my little knowledge on the performance of the economy, I'd say that's an understatement. At the time of writing, at least 40 million Americans had lost their jobs. The continued spread of the virus means even more people will lose their means of livelihood. Governments are overwhelmed and cannot bail all struggling citizens out, leaving millions of desperate people to their own devices. Inevitably, the crime rate will spike as everyone struggles for survival.

With job losses comes stress, which research has noted to sometimes lead to substance abuse, and possible mental health issues. Experts have warned that anxiety, job losses, uncertainly, preoccupation with death (particularly for frontline workers) will cause a sharp spike in mental health problems. It doesn't help that people have become detached, in adherence to social distancing measures. There is minimal interaction and physical activity, at a time when our minds are bogged down and we crave to sit down with fellow human beings to thrash out our problems and map a way forward. Even a mere hug would go a long way to quell the pressure. I remember the Hug-a-Stranger challenge that went viral barely a year ago, and how some people burst into tears of joy upon receiving hugs. But we can't even do that at the moment, as the virus has turned us all into ticking time bombs.  

The pandemic has banished people, even those that need contact to survive, to their little corners where depression threatens to engulf them. Suicides are a notable fallout of psychological trauma, and in the United States, the health system is buckling under the weight of people struggling to stay afloat.  There are warnings that after the coronavirus pandemic, the next one will be in mental health. 

Although there is not much to celebrate at the moment, can at least try to be Pollyannas and look at the bright side? Is there even a bright side? Well, we are still here, still standing, and should make an effort to be our brother's keeper, even with the little that we have. If you still have a job, even one that doesn't pay much, but a  bagful of groceries or even just loaf of bread for the person who doesn't know where their next meal will come from. Say a kind word to someone. Restrain yourself when the urge to lash out at your spouse, neighbour or colleague rears its ugly head. Show the peace sign✌when you'd rather show the middle finger to the distracted pedestrian on the road. Everyone is going through a lot. The heart of this post? None at all, really. Just the panic-stricken ramblings of a freelance journo trying to make sense of a chaotic world. Be safe. 

 

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.