The importance of education for people with autism

It’s World's Autism Awareness Day, this year being marked under the theme Autism and Humanity – Every Life Has Value. I have a lot to say today, and it’s not a pity party. Just a candid discussion and opening up like this is a sheer act of bravery. You might have to read this in installments, go out for a coffee or smoke break and return when it suits you😉. A million pages wouldn’t cover everything in my head and heart, but I'm going to primarily address the issue of education for children/people with autism, but I will digress a lot. I always do. My superpower is my ability to tell 10 or more stories in one. First of all, I'm not one of those mothers that sugarcoat the challenges that autism brings and say "God gives special children to special people" or "Autism is Awesome". I’ve had people that ask, “Waida kuti zviitirwe ani (If not you, then who)?”, “God knows your heart, He doesn’t give you burdens that you can’t carry.” Given half a chance, I really wouldn’t opt to take one for the team, no, thank you sirs and ma’ams. I’d totally rewrite the whole script. While we’re here, please don’t say any of the above to anyone with a medical condition, or has lost a loved one, or whose child has special needs. Those are very insensitive and thoughtless things to say. There’s nothing glamorous whatsoever about autism. It's a horrible, horrible condition that shouldn't afflict anyone. It robs people of the joy of parenting, a real thief of joy. There are people who believe every person with autism is a whizz at Maths, music, art or other things. The reality is actually quite different. It's a debilitating condition, not only for individuals that have it, but also for the parents and carers, especially mothers. When you have a child with autism, the right way to express oneself would be “we have autism” because it pervades all facets of your life. It affects how you parent, socialise, plan your life, sometimes even what you eat as a family, everything. Often when I’m trying to be supportive of Victor or listen to his endless stories, Rudairo waves two fingers in the air✌🏾 , and that’s not the peace sign. It’s her reminding me that I have two children and should listen to her stories too. But I feel that Victor, despite being the older child, needs more attention and I waited four years before hearing him speak, so I have to listen. It’s very hard to strike a balance sometimes, so you have to keep checking yourself and in the process you spread yourself too thin. In very unfortunate circumstances, many mothers have to quit their careers so that they can be full-time caregivers to their children on the spectrum who nobody else can handle. It’s almost always the mothers that have to make huge sacrifices, many fathers just run for the hills to avoid the discomfort. Back to the topic, many children (who then grow into adults) are denied the opportunity to get an education. This could be because of an unsupportive system or families that just don’t see the value of taking them to school. Some families even hide their children with autism or keep them locked up because they are either ashamed or have no clue how to handle the meltdowns that worsen in public. The cruel remarks worsen what’s already a very difficult situation. With so little knowledge on the condition, some schools expel pupils whose issues they can't manage. The perceived misbehaviour is usually an indictment on parenting skills, and it becomes easier for parents to just avoid social settings altogether to avoid getting judged for something they have no control over. Help is available to manage the meltdowns, aggression and other behavioural problems in the form of therapy and medication. At some point I used to be very much against medicating people on the spectrum, but learned to accept that it really is a means to an end. If it’s the only way to ensure your child or loved one can function socially, manage anxiety, hyperactivity or severe behavioural issues and be able to take instruction at home and at school, then why not? Diabetics, asthmatics, and haemophiliacs get medication to help manage their conditions. It’s the same concept. Education is important, even for people with autism, especially for people with autism. It gives structure to their lives and for lack of a better phrase, whips them into line by ensuring they have a set pattern to their lives. Most of them actually thrive in structured environments that schools provide, not chaos, uncertainty or being forced to be hermits that never go anywhere. Despite being differently wired, they have the same needs as everybody else. They need self-actualisation, whatever that looks like to them. Many that get the right kind of support excel in their trades of choice and become contributing members of society, one way or the other. It's heartbreaking when some families write off their children simply because they don't function in a way that society regards as normal. Denying them a chance to flourish is robbing them of their future. Charity begins at home; so if you write off your own child, what chance do they stand out there in the marauding world? When you write off your child, you inadvertently teach people how you want them treated. You need to be prepared to go to war for your child, and I’ve fought quite a few, and have a few more in the tank. Victor knows I’m his fighter. When someone mistreats him, he knows he has to tell me, and after telling me, he asks, “Are you going to deal with them?” And I say yes, and I do address the problem, not like the textbook mad black woman. You can still handle business calmly and decisively. Not all battles have to start with a war cry or the haka, but they still need to be fought. Among the many things I’ve learned in my journey with autism is that although I’m generally a soft person, I need thick skin like a rhinoceros and an inner gangster always lurking in the shadows so that I can stand ten toes down on business when I have to. The world isn’t always kind to softies. You can’t simultaneously be an autism parent and a wilting flower. You need tenacity, you need willpower and you need the grace of God. Back to education, when we relocated to Eswatini, Victor seemed to be accompanying other pupils to school as there was no evidence that he was learning anything. In his own time, he mastered how to type, play games and navigate his and other people's laptops. He started reading for comprehension, something I'd thought would never happen. At one point, his late former teacher Gwen told me I needed to accept that he couldn’t read and stop buying him so many books, but I was unrelenting. Sadly she didn’t live long enough for me to tell her that because of Victor, Rudairo was able to read and spell well ahead of her peers because he always read to her and obliged when she asked him to spell for her.

But try as we did, he just wouldn't write. I was OK with that and was satisfied with him typing. Afterall, no one writes anymore these days. Even at the bank you don't really need to sign with a pen. When we returned to South Africa and placed him at a new school, his teacher Carol insisted that he write. I told her I preferred that he carry his laptop to school so that they could hone what he was already good at, not force him to do what he struggled with and magnify his challenges, making him feel inadequate. She insisted he wouldn't bring his laptop to school because she intended to make him write. I was really upset, but because I didn't have too many options lining up for me in the way of school, I decided to tuck my little tail neatly between my legs and allowed her to bully us by forcing him to write. He did learn, and is still learning to write legibly. Some people struggle to read his hieroglyphics, but I can actually decipher very easily because I'm his mom. His ability to type and write have given me a window into his innermost thoughts. During the COVID-19 lockdown he wrote pages and pages on his frustrations with President Ramaphosa changing goal posts regarding the opening of schools. And when holidays approach, he types several pages about his plans to visit his grandparents in Rusape. Now that he has his own phone, I suspect my close relatives want to crucify me upside down for giving him their phone numbers because he bombards them with calls and messages, even at the most inopportune times. He wouldn’t be able to do all that without going to school. He would not have an outlet, because confining him at home would have denied him that. His social skills, which were appalling before, have improved by leaps and bounds because he gets to meet other people daily and keeps learning how to carry himself in public spaces. It’s been well over a decade since he took medication for meltdowns because they’re completely gone, not a single sign that they ever existed. The one moment I felt grateful for Carol's decision to force him to write, that the insistence was in divine order, was when Victor got lost, it will be four years in five days. A kind mom called the police when they couldn't understand each other. Even though he can communicate, on that day he was scared and overwhelmed, and that got in the way of him adequately using his words. The police tried to ask for information from him, but he likely thought he had been arrested and was scared that I'd be angry, so he refused to give them the details, while I was busy losing my mind imagining all manner of horrors that could have befalled him. And the right to remain silent is protected by the constitution, so he probably was exercising it. The police just fed him and let him hog their heater on that cold night, not sure what to do with him. Eventually, around 2am - 14 hours after last contact - he found a pen and paper in the police station and wrote my name and address. The bewildered officers couldn't quite make out what he wrote so they asked him to read it out loud. He did. That's how they came to get me at home where I was sitting up crying my eyes out. He wouldn’t have written if he had been denied the opportunity to go to school. That's my sermon this World Autism Awareness Day. The results take long or aren't even visible, but trust me, it counts to send children on the spectrum, including the non-verbal, to school and allow them to socialise. Not all who wander are lost, as the saying goes. When you least expect it, the results of going to school will rear their beautiful head. Our children have their own place under the sun and shouldn't be treated like the planet's stepchildren. They should be in environments that allow them to flourish, not regress, they should be seen and heard, they matter. If they should fail to achieve anything in life, may that not be because they were denied a chance and someone in their life chose not to try. It can be disheartening to pay school fees for a child that doesn’t show evidence of learning anything, but pay anyway. It’s not a favour taking them to school, they’re entitled to it. They have a challenging condition as things stand, they don't also have to be illiterate. They will grow up to be adults and can't always be sheltered at home. They'd need tools for survival, be able to read, participate in social activities, transact at stores, work even. For those that believe, Ecclesiastes 9:11 says “I have seen something else under the sun: The race is not to the swift or the battle to the strong, nor does food come to the wise or wealth to the brilliant or favor to the learned; but time and chance happen to them all. So never say never. This morning Victor told me that he dreamt he had left our house and was moving into his own apartment. I don't rule out the possibility of that happening. Everyone, regardless of their standing in society, has a measure of God’s grace. Thank you for reading 🙏🏾🤍.

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.

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.

How do you tell a younger child about her sibling's autism?

It has been a long hiatus. I’m even ashamed to start explaining or finding excuses. Life was happening, as it sometimes does. My life has been congested with both the good and the bad, but my blog is always on my mind. I feel like a bad mom that has neglected her child, but all is well that ends well. I’m back! I have so many issues floating around in my head and will do my utmost best to transfer them from the head to here. I just need to create time to do that. I think my major problem is that I overthink things, to a point where I overthink them to death, literally. They eventually just disappear off the radar because I’m not putting them down on paper or on laptop rather. Some of the things are those that need some research to be done so that I’m more confident about them. But the issue I’m writing about today is a no-brainer to me. It doesn’t need research because I live it every day. It’s called autism. Even if I have lived with this condition under my roof for the past 12 years, going on 13, I’ll never be an expert because new challenges keep presenting themselves. I’ll never have things figured out at any point.

My regular readers would have read about other posts I have written about autism and how it affects my life. In some of them I was rational, and in others I was just lashing out, depending on my frame of mind at those times. If you haven’t read them before, please find them below:

 Know the autism red flags

A mom shares her autism story

Autism: A mother's tale

Autism Awareness 

 

Be Autism Aware in 2017 

 

Happy 10th Birthday Victor!!

 

Happy Birthday Victor!!

 

 

 

I also have a separate blog where I write about disability issues. Most of them were published in The Observer on Sunday sometime back when I used to write a column for them, and some of them will have copies on this blog. Do visit it. It might open your eyes some to the issues that parents whose children have special needs go through daily – their challenges, fears, and small triumphs. Today I had an issue that moved me, or pierced my heart.

Broken Heart Emoji

There was a newspaper with the broken heart emoji. My 4-year-old, who is fairly mature for her age, pointed at it and said, “It’s a broken heart. It means no-one loves him.” I have no idea why she thought the broken heart belonged to a man. I took the opportunity to talk to her about love and asked who she loved. She said she loved her friends Seka, Khanyi, and Summer. Then I asked if she knew anyone who loved her, and she said Khanyi and Seka loved her. Her dad said, “Mummy, Daddy, and Victor love you too.” She said, “No. Not Victor. He’s always running away from me.” He does move away from her a lot when she tries to play with him or sit too close to him.

Victor has autism and sometimes dislikes physical contact, unless if it’s initiated by him. Just yesterday we went to Spur for lunch and he didn’t want to sit next to me. He ended up sitting at the very corner of the seat with one bum to be as far away from me as possible. We went to the movies recently to watch Johnnie English Strikes Again on his request and, as is the norm, were allocated seats. Upon getting to our seats, he didn’t want to sit next to any of us, so he skipped one seat and took the next one. He just didn’t get that it belonged to someone else, regardless of how much I tried to explain. Then this boy came and said, “That’s my seat,” and Victor said, “No!” He was determined not to budge until I told him security would throw him out.

Getting back to today’s situation, or Rudairo’s interpretation of Victor’s poor social skills, I had no idea that was how she felt about it. There have been moments when I’ve seen her cry because her brother was running away from her or refused to join her in a game she wanted to play. My reaction has always been, “Leave him alone. You can’t force people to play with you if they don’t want to!” I realised today that that might not have been the best way to handle the issue. We need to have a proper conversation with Rudairo and explain to her that her brother is different. I have no clue why, but I’m crying now 😭. How do you even start explaining autism to a 4-year-old sibling of a child with autism? Where do you start? It’s not any easier explaining it to adults that think your child is a spoilt brat when he has a meltdown, or that he is dumb because he fails to understand what should be very simple concepts like being aware of dangerous situation such as crossing the road with caution, or understand that the order of things can be changed. There is not much, if any, support for the autism community in Swaziland, and I know there are other families struggling with issues that a little support would have assisted with. Today the father tried, dismally, to explain to Rudairo that Victor does not run away because he doesn’t love her. I say dismally because I doubt that Rudairo is any wiser (just like the rest of us) about the reasons why big brother doesn’t want to have his space invaded. Here is how the conversation went:

            Dad: Victor doesn’t run away because he doesn’t love you. He loves you.

            Rudairo: So why does he run away?

            Dad: He runs away because that’s how God made him?

            Rudairo: Did God make Victor run away?

            Dad: (No answer)

I then swooped in like Mother Hen and said, “Victor, do you hear what your sister is saying? She says you run away from her because you don’t love her,” whereupon Victor said, “Yes!” with a giggle. I asked Rudairo to go and hug her brother, and told Victor to tell his sister he loved her, and he did. She said, “I love you too!” Cute, huh? But he will run away from her again tomorrow. And we will still not know how to explain that to his 4-year-old sibling.

Know the autism red flags

Autism Awareness Wall at Enjabulweni School, Swaziland

April is World Autism Awareness Month. Despite this being the ninth commemoration, precious few people are aware of the condition. Sadly, some of them are actually parents living with affected children but have no idea why their children display certain challenging behaviours. Autism comes with poor communication and social skills, behavioural problems, and cognitive disabilities, all in varying degrees since it is a spectrum disorder. Think of it as tape measure; the level of severity could run anywhere from 1 to 100, so no two autistic people will exhibit exactly the same challenges. Some will struggle to speak while very sharp with certain tasks considered difficult; others will speak very well while failing to perform simple tasks like doing their buttons or tying their shoe laces.

When a child does not develop in the expected way in terms of speech, motor skills, and other milestones, people always find way to explain the challenges away. This happened to Tenkhosi*, a single mother from Mbabane. When her son, Siviwe*, was 18-months-old, he started babbling.  At 2 years he could rote-count and identify numbers. That suddenly stopped, and Tenkhosi hardly noticed it.

The first time the red flag went up was when the boy’s father took him to his home for the weekend. On his return, he stated that his relatives had said the child was not well. Tenkhosi did not pay much attention to it.  Apparently his father’s relatives had been excited to see him and were fussing over him, but he seemed to be in his own bubble and never paid any attention to them in an unusual way.

Eventually Siviwe’s behaviour deteriorated. He started breaking things and making loud noises, and people just dismissed it with, “Oh that one is a real Simelane! Simelanes like breaking and pushing.”  At the age of 4, he got more aggressive, beating his mother all the time. He would only sleep for about three hours and wake up to scream. He even lifted the TV and broke it. Tenkhosi was terrified of her little boy. Some people advised her to go to Maputo and get coconuts to cure him of his speech problems.  Others advised her to beat him up. She did to no avail. “His father wanted him to enrol at the school for the deaf, and I was against the idea because I could tell he was not deaf. He made so much noise at night and neighbours were beginning to complain,” said Tenkhosi.

The strain of looking after Siviwe took its toll on Tenkhosi, until she contemplated killing herself and her son. “I thought of weevil tablets but could not do that to us because I’d seen a relative die an agonising death after taking it,” she said. She then settled on gas. In no time, there was a knock on the door. It was her neighbour who said she had forgotten her keys at her house and had come back for them. “She didn’t even tell me why she came to my house, because as soon as I opened the door, the smell of gas hit her. She said, “Hey, Make the gas is smelling. You can’t have this around your child. He might play with the gas and kill you!” With that, the neighbour took the gas cylinder with her, and the suicide plot was foiled.

“I did not know anything about autism. I just thought my boy was slow and violent. I had no idea where his anger came from. I couldn’t take him to school because I was afraid he would get lost. I even took him to a specialist to check if he had a brain tumour causing the strange behaviour. My first time to hear the term was when the Occupational Therapist said he must have it, and referred me to a paediatrician. Siviwe was finally diagnosed with autism at the age of 5.

Many children are leading less than ideal lives because they never got diagnosed and cannot get the necessary help, such as therapy or medication, to improve their lives. Early treatment has been proven to improve outcomes, often dramatically. Experts say early intensive behavioural intervention improves learning, communication and social skills in young children with autism. Unfortunately most parents, like Tenkhosi, have never heard of autism and just don’t understand what happened to their child.

Siviwe still has occasions when he has meltdowns. “Sometimes I just beg him on my knees, Siviwe, please don’t kill your mom because no one is going to take care of you when I’m dead, but of course he doesn’t understand all that,” said Tenkhosi. “I rarely have conversations with him as other parents do with their kids. All I do is shout, “Stop that! Do this! Don’t do that!” My life just stopped after I had that boy. I’m always looking after him, afraid that he will get lost. I don’t have much support from anyone. This is my problem alone.”

Tenkhosi’s biggest fear is for her son to grow older while remaining non-verbal, and her own aging. “Now I have to control him all the time. What if I can’t do it anymore and it’s just me and him?”

The following "red flags" may indicate your child is at risk for an autism spectrum disorder. If your child exhibits any of the following, please don’t delay in asking your pediatrician or family doctor for an evaluation:

• No big smiles or other warm, joyful expressions by six months or thereafter
• No back-and-forth sharing of sounds, smiles or other facial expressions by nine months
• No babbling by 12 months
• No back-and-forth gestures such as pointing, showing, reaching or waving by 12 months
• No words by 16 months
• No meaningful, two-word phrases (not including imitating or repeating) by 24 months
• Lack of response to name
• Repetitive movements with objects
• Repetitive movements or posturing of body, arms, hands, or fingers
• Any loss of speech, babbling or social skills at any age

*Names changed on request

Additional information from firstsigns.org and Autism Speaks website  

A mom shares her autism story

Below is a story that a friend generously shared with me about raising her autistic son in the UK. I'm really glad for her because being in the First World has plenty of advantages that parents in Swaziland and the rest of Africa can only dream of, although the personal and societal challenges remain the same . April 2 is World Autism Awareness Day. I shall be sharing more stories on the condition from mothers in my circle for the rest of the month.

I have a 3 years 5 months old son, who was diagnosed with Autistic Spectrum disorder. At birth my son appeared normal and I never thought he had any disability, but as he grew older I started noticing things that weren’t normal. I would breastfeed and talk to him, and he would not give me any eye contact like any other child would do under the same circumstances. Often my son appeared angry, scratching and kicking, especially when distracted from what he was focusing on and he would do things repeatedly and be fixated. He started saying a few words like ‘mama’ and ‘dada’ at 9 months, then lost his speech completely by the time he turned 16 months. I liaised with the GP for advice and was referred to a Speech and Language Therapist. She stated that my son had delayed language development in conjunction with social interaction difficulties. The Speech and Language Therapist also referred my son to different health professionals for further assessment and intervention. He had multi-disciplinary assessments and therapies for almost a year before he was given the autism diagnosis.

As parents we did realise that something was not right about our son and even got to the point of asking the paediatrician if he was autistic. However, because they were still conducting assessments, we had to wait until they had done all the necessary investigations before they could actually diagnose. I dreaded the day when we were to going for the feedback, and when we were told by the Child Development Team that our son was autistic, first I was shocked with the reality, then got scared and emotional as I was wondering if we would be able to meet his special needs as a family. I cried a lot and my husband was with me all the way and always giving me reassurance that we would get through this together and that we need to be strong for our son.

As a family we face the daily challenges that comes with this condition:

·         We have to deal with the frustration and anger that my son goes through when he is unable to communicate or express himself to other people and/ or when he is in an unfamiliar environment or surrounded by strangers.

·         We have to deal with the rejection and the comments we get in some public places such as play areas, schools, church, and restaurants because of my son’s behaviour.

·         The anxiety and fear of the unknown due to the unpredictable behaviour. As a family we try and keep to ourselves as much as we can to avoid the comments about our son’s behaviour from other people.

·         Working less shifts/ hours between us as parents because one of us has to mind our son to try and avoid involving strangers for childcare, therefore putting financial strain on the family.

·         Exhaustion due to everyone trying to work tireless towards supporting my son achieve certain goals and meet his needs, for example, making sure that he goes for all appointments and therapies, and family involvement in recommended therapies.

I am a mother of 2 boys and they love each other. However my younger son’s condition has affected my older boy indirectly. Most of the times he protects his brother and understands that he cannot talk for himself verbally but he doesn’t understand why he behaves the way he does towards him (scratching and kicking him) and still be expected to understand the situation. He also doesn’t understand why we cannot go to public places as a family more often now & why he cannot go to a friend’s party with his brother, even though we try to explain to him at his level of understanding. When my son was 22 months we visited home (Swaziland) from United Kingdom and he was very unsettled and crying the whole journey, not allowing any of our excited family members to touch him when we were home and the whole family ended up not enjoying the holiday and have not visited again since. We have travelled short journeys around Europe but we use our own car, which is familiar to him and/ or a Ferry because we know he loves to see the water and run around within the ship. As far as activities are concerned we ensure that we take him to places where he can jump, climb, run and play independently and freely but still be safe. Lately we have been introduced to a bouncing church, for families of children with special needs and at home we try and provide as many activities as we can to keep him occupied.

My son is unable to communicate verbally at present and tends to get frustrated when he cannot express himself effectively, he doesn’t like being in unfamiliar surroundings and around strangers, he doesn’t like sharing or taking turns and gets fixated to certain routines and objects. He would throw himself on the floor, kick, hit, scratch and even bang his head to show his frustration. I consider my son as a strong and intelligent boy, he is very good at solving puzzles, technology such as playing games independently on the computer, iPhone or tablet. He is also good at playing musical instruments, singing and dancing, likes watching TV and certain movies. He loves big colourful and musical toys, trains and cars, also likes outdoor play with sand, water, trampolines and climbing. My son is a lot calmer now and progressing positively but I fear about his future and ask myself a lot of questions, however I still have hopes for him; to live an independent life without relying on other people, to be able to communicate verbally and understand the meaning of the words he says and to understand, interact and connect with the world around him instead of living in his own bubble. What breaks my heart about this condition is to see my son suffer and be helpless, not being able to do anything for him. It hurts to hear people passing comments about my son’s behaviour without asking what is causing the so called ‘bad behaviour’. The worst thing said about my son was when we were in a taxi and it was his first time being in another car apart from his dad’s car, so my son was kicking, screaming and hitting out. Accidentally he kicked the front seat and the taxi driver shouted at my son and even said he had never seen such a child so spoilt like my son and if he breaks anything I’ll pay for it, so I had to drop off before the situation got worse and before I got to my destination.

It is not very easy to live with a child who is autistic because some people in the community will not understand why your child acts and behave the way he does, however there is lots of support within the community as the local authority does have plans and provisions put in place for children with special needs and disabilities, starting from suitable play areas, financial support to cater for disability living, funding educational and health needs, and getting support from allocated keyworker and support groups. My strength comes from the reassurance and support I get from my immediate and extended families, friends and support groups. My son is not prescribed any medication at present and I so wish to keep it that way for as long as he is manageable without. My belief about medicating is that it does help to a certain extent, however there is lots of fatal side effects that comes with the medication, therefore should be given as a last resort/ option. Having a son with autism has taught me to accept situations as they are, not to give up but to keep on trying and to be strong for the sake of my child. I have also learnt not to judge people by their behaviour but to try and find out what is the real problem behind that person’s behaviour. I believe that my Son is not aware that he is different from other kids at the moment as he is still young and does not understand other people’s comments about him. I hate to hear people saying my son is spoilt and that is why he behaves the way he does. When there is something that brings a smile on my face, is my child’s obsession with cleanliness and tidying up, he tends to pick up even the tiniest dirt on the floor and puts it on the bin, and he would wipe his mouth after every spoon feed.

Both myself and my husband are nurses by profession and have nursed clients with autism at some point in time, however it becomes different when you have to manage your own child with autism. In the past I have had two of my closest friends having children with autism but I never thought that one day I’ll have my own child who is autistic, and have now realised that I was not supportive enough to them as I didn’t know what they were going through. Our profession has helped us a lot in managing our Son’s condition and also having friends who are going through the same situation helps, as we always refer to them and get all the support. It’s true that with our families and friends living very far, we can’t get physical support from them but with the improved technology we always have people to talk too and get emotional support. The advantage being in UK, is that the local authority ensures that all children with special needs or disabilities are assessed as early as possible and have education and health care plan in place, provisions and budget made according to the child’s needs and requirements, therefore as a parent you don’t have to be stressed about finances as far as therapies/ health and education is concerned. My message to other families with autistic children is always to think positively, follow your own instincts and never ever give up hope. And also not to forget that you’re not alone in this journey but there are other parents who are going through what you’re going through.