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.

My travel journal

How I dealt with burnout

I suffered from severe burnout for several months, felt I needed to step away from my surroundings a bit, but kept procrastinating. Slowly, everything started to get really loud and amplified, including the children. It took a concerted effort to not lash out, and smile instead, at my daughter when she was teasing and being playful. When my son got flappy, as he always does, I’d get into a complete tailspin. Work that I would normally accomplish in under an hour was now taking me three painful days.  There are times when I would sit by my computer to type and my mind would just be blank for hours. I could not even blog! I even thought of going to get a few tattoos, thinking it would help lift my mood. I knew I had to get away, and that also was a difficult decision to make because I don’t like being away from my children. We have a very strong bond. I realised, though, that I couldn’t be a good mum if I continued to stay and allow depression to set in.

I told myself I needed to go on holiday with just my little laptop, 750-piece jigsaw puzzle, bible, crafts, favourite books, walking shoes, dumbbells,  foot spa, yeah! It looked like it would be a glorious few days. I already had a destination in mind. Then I thought how lovely it would be to go and spend time with my parents who I hadn’t seen for 8 months. I’ve gone for longer durations without seeing them, but felt it would be great to see them when my attention wasn’t divided.

TRIP TO JOHANNESBURG

I boarded a shuttle from Manzini to OR Tambo International Airport. It was my first time to sleep comfortably along that route. During my other trips to Joburg I always force myself to keep my eyes peeled in order to keep them on my husband who has a fast foot. The highway is littered with shrines for people who lost their lives on it. Many more don’t have shrines. On the last trip before this one we had actually seen a man who had just been a few minutes ahead of us being covered by a foil sheet after losing his life. That traumatised me for a few days.

THE AIRPORT

A picture I took from the viewing deck

I had a Tom Hanks in The Terminal experience at OR Tambo. I arrived at 1pm for a 6pm flight, with nothing of substance to do. I looked around in vain for fancy stationery for my penpalling hobby, had a lousy meal at Nandos, then decided to go to the viewing deck to watch planes touch down and take off. I used to bring my son to the deck and he used to enjoy it. I decided I would also bring my daughter the next time I came to Joburg. How I missed my kids and wished I could have been with them for those hours before my flightL!

The airport staff appeared to be on go slow and by boarding time, I was still at the very back of a long and winding queue. I asked to jump the queue and many people understood until I got to a very obnoxious man. He said, with unwarranted vehemence, “No, we are all waiting to go somewhere so you can’t go ahead of us. Just wait for your turn!”  He placed suitcase on one side and his wife (who had a big frame on the other). Everybody just stared at him in disbelief, because it wasn’t as if he couldn’t see the crisis at hand or he would lose his seat by allowing others to rush for their flights. When he realised how much he had overreacted and how much attention he had drawn to his ridiculous self, he started gently chatting me up and tried to explain how my plane would wait for me. I wasn’t even listening to him. When my turn came, how I tore down to the boarding gate, which appeared like kilometres away. It was my first time flying with Air Zimbabwe and had a very negative perception of them. I was convinced they would just take off without me, and without batting an eyelid. Thankfully the flight was delayed by more than 30 minutes. I had never been so delighted about a delay in my life!

HARARE

Harare has become so hostile and aggressive. If you are used to, or prefer things being orderly like myself, you will surely lose your mind. However, home is home and I was truly happy to be there. My friend picked me from the airport and as soon as I set foot outside the airport, I felt like kneeling and kissing the ground like the Pope. I just felt free, like I’d been carrying a house all along.

The Zimbabwe Republic Police are now like marauding lions on the streets, armed with their spikes and baton sticks. Police presence is supposed to instill a sense of security but I couldn’t help feeling like my life was threatened every time I saw a police officer. They are everywhere you don’t want them to be and nowhere near where you need them.  When I went to the 4^th Street informal terminus to board a bus to Rusape, touts that appeared to be high on something would descend on potential passengers like a pack of jackals and starting pulling them in different directions. There is also cheap illicit liquor available on the street and touts types must be the target market. Everyone in Harare knows about the atrocities being committed at 4^th Street terminus. People want to avoid it like the plague. I even saw a tout take money from a woman’s handbag as other touts pulled her in all directions. All the tugging might look like a competition for customers, but I suspect it’s actually a gimmick to pickpocket. Surprisingly, or not, there is never one of the thugs in uniform in sight. They’re all out there bullying and fleecing off motorists. A few days after my return to Swaziland, I heard that an old man died after an attack by the touts at 4^th Street.

THE POVERTY

I was last home in January, and it was sad to see how much things had deteriorated L in that short space of time. It appears everyone has been reduced to a vendor, and there’s barely any space left on pavements for people to walk because that’s where vendors display their wares.  The vendors and their carts have also overspilled onto the road. Their presence appears so natural like they have always been there, like their carts have every right to take half the road.

Vendors in Harare

On my way to Rusape, a deaf man got on the bus and gave people a paper with his credentials endorsed by a disability organisation to read and give him alms. I simply shook my head without even reading the paper because he reeked of alcohol. I found it quite disrespectful that he would go and splurge people’s hard-earned cash on alcohol, then come back to ask for more. He showed me a coin, indicating that’s all he was asking for. I shook my head again and his face displayed murderous rage.

It is a common occurrence for beggars to bum a ride on public transport, collect some change, get off on one station, and find another bus to continue the cycle. No sooner than the first beggar has alighted than the next one gets on the bus and starts singing pitiful church hymns that tug at your heartstrings and make you want to dig deep into your pockets. However, even if you are a compassionate passenger, there are instances when you have to tighten your fists. It’s impossible to save everyone. On my way to Harare an emaciated man also got on the bus, and a few minutes out of Rusape, he stood up and started narrating how he had been a bus driver but had had to quit working after he was diagnosed with cancer. He asked for money to be able to feed his family and moved from the front of the bus to the back with an open palm, collecting coins. He even gave out his phone number, citing that he was aware of the cash crisis so those without hard cash could do mobile transfers. There I was sitting with my sunglasses and bright lipstick. When he got to me, he must have thought he had hit the jackpot because he lifted the leg of his trousers and announced, “Honaiwo zvakaita gumbo rangu izvi,” (Look at what has become of my leg.)  I quickly closed my eyes inside the sunglasses and never saw a thing. While I understood his plight, I didn’t think it was necessary for him to shock people into donating. I actually thought it was unfair and a little aggressive.

HOME IS WHERE THE LOVE IS

One of the sausage and cheese eating dogs, Rusty

While standing somewhere with my two friends, a kombi which was parked near us wouldn’t start. Two men that were in it requested a push. My friends laughed at their audacity to ask ladies for a push, but the men were really desperate. I said, “Absolutely!” and helped push the vehicle. They managed to drive off. My friends were laughing at me and I didn’t care. I was just so happy to be home I didn’t know what to do with myself. 

I was surrounded by so much love from my parents, friends, and total strangers, I felt like singing, “Love is all around me” by Wet Wet Wet. I wished I had a huge jar to can all that love to then take in small doses upon my return to the lacklustre life here.  One woman I sat next to on the bus bought about 20 mint sweets. She gave me 10. I was surprised because I’m not used to such gestures from strangers. When I reached my destination and she was still proceeding, I remembered to say thank you again for the sweets. There was never a dull day for a whole week. Friends visited, I visited some and treasured every moment, though I unfortunately had to come back without seeing some people I would have loved to see too because of limited time. Even my parents’ big dogs went crazy with joy when they saw me. They are heavy, yet they like standing on their two legs for hugs. One can easily fall from their weight. They eat lots of meat, sausages, cheese, and all the good food you can think off. My father heads out to OK supermarket every morning around 6 to collect leftovers from the restaurant. He had many stories to tell about the people that he meets there while queuing for dog food. Some of the people actually take the food home to eat. There was also talk of stray cats also hovering for the same.

My parents and friends overfed me! There was always good food being sourced every day and I couldn’t say no.

My father makes the best Maputi nzungu combo ever!

They would have been offended and I also didn’t want to miss out on food that wasn’t readily available in Swaziland. I ate magogoya, maputi, mawuyu, masawu, and drank maheu. I even managed to smuggle all those things and more back to Swaziland for my family. My special diet went out the window. My friends took me out and I ate everything I wasn’t supposed to eat. When they were done feeding me, they gave me gifts. I got lots of homemade peanut butter from a childhood friend and a cutlery set from another. People were tripping over themselves trying to make me happy, and I lapped it all up!  I possibly gained two or more kilogrammes in one week, but it would have been worth it. I didn’t weigh myself upon returning because I wasn’t going to allow a scale to ruin my precious moments at home. I do hope that one day I will also be able to treat my friends as they treated me.  I didn’t even tell them about the burnout I’d suffered but they somehow just managed to help get rid of it. A holiday at a resort would not have made me feel as good as those people made me.For a whole week I woke up late and did absolutely nothing but talk, eat, cook sometimes, and walk a little. It was lovely. When my parents spoke to me, I would listen attentively, knowing I’d miss these real conversations. It also was a window to their everyday life. I even swapped cross stitch patterns with my mom. When my week was up, I left home feeling rejuvenated and ready to trample snakes and scorpions. Air Zimbabwe allows 40kg baggage. I had about 45kgs of treats I wouldn’t find in Swaziland. Fortunately I got to the airport early and was able to weigh my luggage well in advance of check-in. I shoved the excess 5kg into my large handbag and felt like my own hero! 

Feeding the body that works

Yesterday I was chatting with a beloved friend who is suffering from a serious case of burnout. She told me how everything was weighing down on her to a point where she has totally withdrawn into her shell and can’t enjoy the things she loved before. I have such moments too, together with many other people. Sometimes I feel so overwhelmed with my responsibilities and the walls start closing in on me.  I start to obsessively think about the frustrations in my life and begin to feel that my life really sucks and no-one quite understands what I’m going through.  I can almost physically feel cobwebs invading my brain in moments like those, it’s not a good feeling trust you me.

We usually get so caught up in the rat race that we forget what really matters in life. Of course,what matters in life is relative. We all have our different takes on the matter. What really counts for me is to have meaningful relationships, contentment, and good health. Now, if I’m disgruntled, then all the above can’t come into fruition.

I told my friend that it was normal to be discontented, but what counted most was what we did with the feeling. We don’t drown by falling into the water but by staying there.  Sometimes we need to sit down and look at our lives to find out where exactly the roof is leaking and take the necessary measures. Some levels of burnout just require us to have a brisk walk or jog, watch a movie, a much needed chat with an old pal, or reading a good novel and you feel rejuvenated. Others require a complete overhaul of one’s life, like changing career path, weeding out toxic people from our lives, or “talking to someone”, that isseeing a professional counsellor. I come from a society that hasn’t fully embraced the expediency of counselors, but these are very important people that are trained to help us put our lives back into perspective when the tide threatens to overpower us.

I asked my friend if she had a hobby to help her take her mind off things and she said her days were cram jam full of responsibilities and there was just no time for frivolities like hobbies. That’s where we go wrong, in my opinion. Dwelling on our woes just sinks us deeper into the abyss that is depression. It has this way of creeping up on one. Sometimes all you need to get out of a negative mindset is a fun activity to help you clear your head and get back on the horse. It’s difficult to come up with effective solutions to life’s problems when you are down at the bottom of the barrel.

I’m not a counselor, but I have a formula that works for me. When I’m feeling particularly low, I squeeze in about 30 minutes to do something I love. Before I know it, the 30 minutes would have overrun to an hour or two and that works wonders for my brain. Having a hobby is underrated. My hobbies keep me sane. I get so absorbed in what I enjoy doing that I forget to think about what’s bugging me. I love writing, reading, cross-stitch and exercising. For those, like my friend, who feel there just aren’t enough hours in a day to factor in hobbies, it might mean waking up early or sleeping later than usual to get some me-time. Draft a timetable like a school kid and stick religiously to it if time management is an issue.

Taking care of our head space is just as important, if not more, as everything else. There are just too many things clamouring for our attention – kids, work, households, spouses, extended family and more. We are, however, not effective in our respective duties if we feel stretched beyond what we can endure. We can’t take care of the needs of others without taking care of ourselves. Sometimes when I remove myself from my children to breathe a little and recharge my batteries, I start to feel guilty. I feel selfish for enjoying myself after leaving my baby with the sitter, screaming for me. I have to keep silently chanting to myself, “I deserve this time alone, I need it, baby is going to be just fine”.