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.

The grave issue surrounding repatriation

Because of the current fiscal crisis in Zimbabwe, millions of people have moved to greener pastures all over the globe. Those who have migrated to other countries have done a great job keeping the wolf from their families’ doors by sending back money for sustenance. Many of these people, particularly those in the West, spend many years without coming back home because it’s probably too expensive for them to do so, or they haven’t regularized their papers to enable them to be accepted back after the visit to Zimbabwe. I know people who left for the UK decades ago and have never come back home, not even for their parents’ funerals. They start their own families with people their parents have never met or might never meet, and just connect with their families over the phone and via social media. I’m not very far from home but my visits there are very few and far between, and when I make them, they are very frenzied because there are many people to see in so little time. I can’t begin to imagine how it must be to never visit your birth country.

Like everybody else, people in the diaspora die. I’ve witnessed many very sad events when families just wake up to the news that one of their own has died in the UK. People get into a tailspin wondering where to start, where to get money to repatriate the body of their loved one. Culturally, people believe everyone should be buried close to their ancestors, and anyone buried in foreign lands is deemed to have been “thrown away”. Should calamity strike the family at some point after the foreign burial, they start fearing that it’s the deceased’s spirit which is anguished for not being buried in the land of their fathers.   Some have been lucky to have their deceased relatives’ friends and colleagues fundraise for repatriation. Others sadly just grieve at home and have to contend with pictures of the funeral sent by well-wishers.

I don’t really think where someone is buried has bearing on life afterwards. It’s not like they are bringing you to sit at the dinner table with them. They are still going to throw you away. I do understand, however, that after not seeing a family member for decades, then you’re told they have passed, you might want to see their remains, hold a vigil for them, sing and dance the whole night, witness their burial with your own two eyes, and be able to visit the grave to place flowers before you can get closure. It’s particularly harder for the older generation. They will hold family meetings and declare that there’s no way their child will be buried in a foreign land. Then they chill and wait for others to cough up because all they have is their wish for their child to come home, no two cents to rub together whatsoever.

Some of my friends in the diaspora told me that they don’t mind being buried where they are, and think all the money spent on repatriation is a waste. Unfortunately they haven’t expressed their sentiments to their families, who will insist on bringing them home. I think the decision to be buried abroad should be communicated well in advance so that people can explain themselves to their families, and people can make peace with it. It can be infuriating for the extended family when meetings are held following a death, whatsapp groups are formed with their names forcibly added,  and coercion is used to make people contribute for the transportation of the deceased’s remains. In their off-shoot clusters people will jabber about how the deceased used to be a picture of success on Facebook, going to holidays and stuff, and even bought iPhones and cars and built houses for his parents. Why didn’t he have the presence of mind to invest in a repatriation policy?

Among the most difficult things to discuss in life are funeral plans. We do not like to harbour morbid thoughts. We have so much to live for – our jobs, families, friends, and life in general. Thinking or talking about our mortality is like throwing a wet blanket on a roaring fire. Some people are only concerned with immediate consumption and believing “tomorrow will take care of itself,” which couldn’t be further from the truth. Tomorrow never takes care of itself, you have to take care of it. But we all know that death is certain and we should make plans for it while we still can.

Avoiding certain conversations usually results in people being caught flat-footed and struggling with issues that would have been very easy to handle had they been managed appropriately. We need to talk to our families about where want to be buried or if we choose cremation, what would we want done with the ashes, what do we want done on our memorial services, things like that. It won’t be an easy conversation because the red flag always goes up in people’s heads when you start discussing details of your funeral. They associate that with suicidal tendencies.

Repatriating a body, especially one of an uninsured person can be a long and wearisome experience, particularly for those already reeling from the loss. It is fraught with a lot of paperwork, expenses and bureaucratic procedures that will send one into a tizzy. If you are in the diaspora, have that conversation with your family.

Below is what my friends think about repatriation:

Patricia*(UK)

I choose to be buried here where my kids are and will visit me daily if they wish to.

Martha* (UK)

I don’t want my body back to Zimbabwe. I’d rather the money be used on my child to pay school fees. I will be dead so no big deal. If my siblings have the money, they can repatriate. I feel it’s a waste. It’s better to use the money to travel to England, be on a plane for some of them for the first time and do the funeral. I’d rather get life, than funeral assurance. Families just need to be told that it costs an arm and a leg to repatriate a body from abroad. Even if you tell them your wish, people will just disregard it when you die.

Harriet*(US)

We buried my dad here, partly because our whole family was here and we thought it was better to bury him where we would be able to visit his grave easily, but partly because repatriation was $10 000 and we had just arrived here and didn’t have the money. My relatives were not ok with our decision but they were not willing to come up with the money which we asked them to do.  When I was in Uganda I always told my family, “Don’t go to the expense of taking my body to Zimbabwe. Cremate me and take the ashes.” 

*names changed