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 🙏🏾🤍.

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

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

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

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

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

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

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

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

Young people in Eswatini (unrelated to the story)

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

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

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.

Daddies' girls and mummies' boys

I have been quiet for too long and am even embarrassed to be back. There are so many things happening in my life, good thingsJ, that I’m struggling to keep my head above water. I shall be writing all about these things, but need a little more research and a little more time to put them together. What got me to write at this very moment is my nagging cousin. She follows this blog (I’m grateful that she does), and is frustrated at my long hiatus. Trust me cousin, it frustrated me too!

The topic for today was motivated by a conversation I just had with some friends regarding children and how sometimes they tend to favour one parent over the other. When I was a child, well I’m still my parents’ child so let me say as a younger child, I can’t say I really favoured one parent over the other. I, however, somehow chose one parent over the other depending on what I wanted from them. If I wanted a good conversation, I’d go to my father who has amazing story-telling skills. I hope he can still write his first book at close to 69 years of age. If I wanted money, I’d go to my mother. She didn’t tell too many stories because she was busy thinking about making money or just being practical with her crafts. I even helped her with her crafts, and that’s one of the things that bonded us. When I look back at my childhood, I remember conversations I had with my father, and things I did with my mother. I think Rudairo will craft too because she always asks me to teach her. I’ll post my crafts here someday soon.

Back to the events that led to this post. I allowed my 4-year-old daughter to buy a can of Coca Cola (coke), against my better judgment. We never buy soft drinks for home because my children have enough sugar in their system to last them a lifetime; they don’t need to add more. Since it’s a weekend, coupled with the fact that she hasn’t had a soft drink since Christmas, I indulged her.  She slept all afternoon, and when she woke up around 5pm, she wanted to drink her coke. I told her she could only drink it tomorrow because supper was almost ready. Around 8 she drank her coke. Because she was high on the coke, she couldn’t go to sleep, even though her system was telling her it’s past bed time. I made coffee to help me stay awake and do some work. I used my cup (everyone has their own cup here). My daughter said, “Mum, you must never use daddy’s cup. You should always use your own.” I don’t know why she had to say that because I was using mine anyway. I said, “I’ll use your daddy’s cup if I want to.” Immediately the floodgates opened. She wailed loudly and continued remonstrating   about how I shouldn’t use her dad’s cup. When she got tired of crying, she went to sleep.  At some point tonight I had to snap at her after she cut my conversation with her dad short saying, “Mom, you need to be quiet when I’m talking to dad!” The audacity! If I had said that to my mom, she would have slapped that smart mouth.

As a small baby of about 6 months, she would come to me for milk, cuddles and to dance to Trace Urban beats. When the father came home, she suddenly became this chatterbox she never was in the absence of her dad. She would blabber away for several minutes without stopping until I started to feel sorry for her, thinking gosh her little lungs must be struggling with that long speech.

I was chatting to some friends about how my 12-year-old son is more attached to me rather than his dad. It was during that conversation that I began to appreciate just how affectionate he is. When I’m in the kitchen cooking, he comes to sit there and keep me company. Because he has autism, he struggles to come up with interesting topics for discussion, but he will be present, repeating the same stories he has told me before and rerunning plans for his April, August and December holidays for the umpteenth time. Even when I’m in the bathroom, he sits just outside the door, or he’ll go to the window outside so that we can continue our conversations. When I was pregnant with the sister, I had severe morning sickness and would throw up every morning without fail. As soon as I woke up, I’d go and sit in the bathroom until the bout was over. Victor would sit with me without ever getting revolted by the throwing up business. The father would quickly make himself scarce to avoid even hearing me vomit. Victor would even look in the bowl and say, “Mummy there’s a green vegetable that just came out.”

Rudairo loves trinkets, she is a very girly girl. Each time I buy her something, the first thing she says after the thank yous is, "Daddy is going to be so happy for me."

When I have to travel for some time, my son gets quite miserable while my daughter really couldn’t care less. She only starts to cry when I actually depart, but Victor worries as soon as he hears I shall leave at some point. I thought daughters were supposed to be mums’ best friends. That hasn’t been witnessed here! She has her moments when she’s extremely affectionate to me, but that’s usually when the dad isn’t around or when she just feels girls should do things together. I’m quite fascinated by that. I’m particularly thrilled when she goes to the bathroom for Number 2. She always shouts, “Daddy, come and wipe me!” that always somehow happens during meal times. The dad, at those moments, doesn’t look so proud to be the chosen one. And at those moments, my cheeks hurt from smiling.  But when she has a nightmare or needs food, she calls me. So essentially I’m the beast of burden as far as she is concerned.

I’m sure if one went to my parents, they would separately have things to say about how I related with them as a small child, maybe even now. One day someone repeated slander about me, and the first person I thought of calling was my father. Maybe my daughter takes after me after all.

So what do you think your parents would say, or would have said (if they are no longer with us)? How do you feel you related with them as a kid?

Ignorance on Down syndrome breeds discrimination

It is encouraging when more and more mothers come forward to share their stories on raising children with disabilities. I believe this goes a long way in raising awareness in the community. When people understand what affected families go through, they might be more empathetic and less liable to be insensitive.

Mandisa* gave birth to a child that appeared typical, apart from her low birth weight of 2.5kg.  Lungile*, who is now 12, didn’t gain much weight and Mandisa took her to several doctors to find out what could have been the cause.  All the tests done never picked up anything abnormal.  She was able to reach all the milestones, like sitting, crawling, standing and eventually walking by 18 months.  The speech was what took long to come as she was only able to talk at 6 years old.  Although this was not her first child, she unfortunately did not see any tell-tale signs of Down syndrome.  When Lungile was about a year old, she had to see an ENT (Ear, Nose and Throat) specialist who asked Mandisa if she was aware that her child had Down syndrome.  He went on to explain everything regarding the condition before referring her to a doctor in South Africa. That doctor referred her for occupational therapy, from where she got another referral for speech therapy.

“What was sad was that many people, including my relatives, were aware of my child’s condition, but nobody wanted to break the news to me.  At first I asked God why me especially because I am one person who loves people with disabilities.  Later on I realised that God gave me this child because he saw my heart and knew that I would love her,” said Mandisa. She added that caring for Lungile has not been an easy journey, emotionally, financially, socially and spiritually, but credited God and her family’s support in making it bearable. Lungile  gets support for her older siblings, teachers, school mates as well as Sunday School Teachers at her local church, who accommodate for who she is. There are, nevertheless, still many challenges that Mandisa and other parents like her encounter as they raise children with Down syndrome.

Mandisa describes Lungile as a bubbly child who is extremely kind and loving, but her distinctive Down syndrome features usually draw stares and not much love from people. She says the discrimination in society is particularly heart-breaking because it is evident in children who refuse to play with Lungile when she reaches out to them. She just loves taking care of people, including her classmates who she usually assists with walking to class at drop-off time and packing their bags before home time. The discrimination she encounters is a wet blanket on her sunny personality and she has since stopped trying to engage other kids, choosing instead to watch television and play computer games.

Mandisa believes discrimination primarily emanates from people not understanding Down syndrome, and equating it to madness.  There needs to be more advocacy for Down syndrome in schools, churches and communities because people don’t understand it yet; most parent end up hiding their children to protect them from the bad treatment they receive from society, she says.

“People have said and done of lot of unpleasant things to my daughter but the most outstanding was when a doctor said to me, ‘Take out your retarded child’.  Lungile was sick, I don’t even recall if he ever said anything concerning the sickness.  Another instance was when she tried to touch a laptop of one of my relatives and he immediately took it away as though she had leprosy which was contagious,” said Mandisa.

To top all the man-made challenges, parents whose children have the condition have to contend health problems that usually accompany it. When Lungile was young, there were frequent visits to doctors for various ailments including skin problems.  Thankfully, she outgrew most of the ailments but is still receiving treatment for the persistent skin problems by a doctor outside the borders of the country. The shortage or non-availability of specialist doctors locally is a big thorn in the flesh for most parents because they cannot always access the doctors whenever they want to, and seeing the doctors takes a huge chunk out of the family coffers.

Mandisa’s wish is for Lungile to be fully independent and live a fulfilling life like everyone else. “My worst fear is what would happen to her when I’m no more.  The society we live in is not kind to people with challenges, especially females. Bad people see an object to be sexually abused, ridiculed, discriminated, and all sort of negativity which leads to low-self-esteem of the individual,” said Mandisa. She also worries that as Lungile approaches puberty, would she be able to manage her reproductive health issues such as menstruation and being taken advantage of.

Mandisa urged parents whose children have Down syndrome in the country to come together in order to share ideas on how to overcome specific situations. She also encouraged society to educate itself about what Down syndrome is and then be more accommodative towards people with this condition.  “I also implore the Ministry of Education to consider special schools for people with special needs.  If it is inclusive education, they should fully cater for the children with special needs from pre-school to vocational training,” she said.

Lungile is at a private school, but when her time there is up, her mother doesn’t know where to take her. “Swaziland is a very small economy where there are no facilities to cater for such a disability.  I am also sceptical of taking her to facilities beyond the borders as I fear abuse.  I have just left everything in the hands of God.  There is one thing that I know that God has good plans about my daughter, plans not to destroy her but to give her hope. (Jeremiah 29:11),” Mandisa said.

Names changed on request

Down syndrome awareness is represented by the blue and yellow. 

What advice would you give to your son who is getting married?

In a recent episode of one of my favourite South African soapies, Ashes to Ashes, a young man, Tsietsi was about to get married. The father, Sello and his friend, Mickey were standing with him in an office and the father asked Mickey to help him counsel Tsietsi on how to handle marriage. Together they said if you ever have a girlfriend and her bed is warmer, always ensure you sleep at home every day. If the other woman is a good cook, eat her food but make sure you eat again at home. If your wife catches you out, lie! Remember your lie and stick to it. BOOM! Marriage counselling was done in less than two minutes. They were convinced they had equipped the young man for his upcoming marriage. I just thought to myself, what a load of BS.

Picture sourced from Internet

But this is not just drama. My own research with men in my circle showed that most men never really got premarital counselling. They just bumble through marriage with no clue whether they are coming or going. People just assume, “Oh he’s a man. He’ll figure things out.” This is hardly fair on the man and the wife he marries. Not giving your son guidance on marriage is setting him up for disaster. Even if he got an angel for a wife, it would still not work because it takes two to tango.

I went to my friends and asked them what advice they would give to their sons and I got what I thought were very enlightening answers. I do hope all of them follow their own advice. My input is at the very bottom. Enjoy reading, share with your spouse if you are already married, do some self-introspection, and most of all, communicate with your significant other to find out what would make them happier.

FARIKANAI :  This is a piece of advice I just gave to one of my sons in the Lord. 1 Peter 3:7 Likewise, ye husband, dwell with [them] according to knowledge, giving honour unto the wife, as unto the weaker vessel, and as being heirs together of the grace of life; that your prayers be not hindered. Most married men struggle in life because they live contrary to this scripture. If you check all men who abuse their wives, they haven’t achieved much in their lives and they have no peace. It’s like they reach a dead end. I like the part that says that your prayers may not be hindered. Yes the basis of a strong and great marriage is God. You need God in totally every aspect of your marriage. Know that the woman is a weaker vessel and needs to be taken care of and do not be offended by her weaknesses. I’d also advise him that he is the head of the family and should provide for his family. His wife is there to help him and not to fend for the family. Remember your wife is not your mother to feed you and provide for you. Love your wife.

CHIZ: I take it this is advice to a son who is ready for marriage, meaning one who is in a serious relationship and is really considering it! in which case I would have to repeat the values I have been instilling in him all along, because for me this topic shouldn’t just pop u at this critical moment like it did in my own case with my dad. To be honest I don’t remember half the things he said in that discussion because I brought it up, received the talk, and in two weeks I was married. This marriage advice should really start from the time this lad starts noticing girls, at these stages though, it would be mostly about how he should treat women, what the bible teaches on the subject etc. be involved in his life, creating an atmosphere where the lad would rather talk to you about relationships rather than his peers (sounds strange, I know, but it can be done). So when it comes to the real deal…it’s a matter of highlighting a few reminders and bringing to his attention some of the responsibilities that are associated with this life-changing decision and of course supporting him all the way.

DANIEL: firstly marriage is about giving and receiving. It must be balanced. If you find yourself just giving or just receiving, there’s something not right. Secondly never say or do things you don’t want said or done to you. Last but not least, don’t take someone’s child into marriage if you’re not ready to love and respect them. They could be happy with someone else so make sure you make her happy always.

RUTH: what I always tell my son is, “don’t be like your father,” because he knows all about his father’s cheating ways. He caught him in the act so he’s been saying he doesn’t want to get married.

SUSAN: would ask him to remember karma, golden rule. And to go out and experience the world, to know about condoms and safe sex- not to rush to settle. Have fun, get a profession, travel before you settle and only settle with one who is your friend – don’t settle  because of societal pressure, and have a bit of time to bond with your wife before babies. If after two years or so you see that you’re still good, then procreate – otherwise be free to move on. When you settle dear boy – spoil her rotten, tell her you love her, appreciate her make-up, her dressing, her cooking – buy her flowers. Kana mari isipo maputi (When the money isn’t there he can buy maputi.) Kiss and hug her, hold hands, be her lawyer, her critic (who you criticize with love), be her best friend, her better half and helper. She isn’t your slave or subordinate – she is your equal whom you should love and adore. Ndapedza hangu (I’m done here).

TADIWA: I will tell my son that ideally a man should work and provide for family. The wife is his helper and kubatsira hakumanikidzwi (help should not be compulsory). He should love his wife and everything else will fall into place. He should appreciate it when he argues with his wife…the moment she stops arguing or correcting or ask about his whereabouts…he is SINGLE again. 

MANDY: Work hard for the family. Knowing that family comes before all else. Respect the wife, support her dreams. No belittling or verbal, emotional, physical or financial abuse.

• Help the extended family from afar rather than bringing then into the home. Empirical evidence has proved that it strains or even ruins the marriage.
• Incorporate wife’s suggestions and make decisions together rather than being wayward and headstrong.
• Take care of the in-laws who brought up his wife, or at least allow the wife to do so if she has the capacity.
• Be a good role model for the kids through good character, work habits, relationship with wife.
• Strive to keep wife and kids happy. Spend quality time with them, teaching them to fix plugs, gadgets, going for holidays, fishing, taking walks in the hood, watching movies t home/cinemas.
• Invest for the family. Having trust funds, school accounts, rainy day accounts, houses, etc.
• Go to church, love God, pray. It usually helps somehow.
• Help around the house even if you become rich – mowing lawns, unblocking drains etc.
• Instill and maintain healthy habits and fit body.
• Cut the repressive traditional crap such as kugezeswa maoko(having the wife kneeling before him with a dish of water so he can wash his hands before meals), leaving clothes on the floor etc kungoti ndezvemukadzi come what may.

ZA: I would advise him to choose wisely, not to look at the outward beauty only but to take time to know her and see if she is also beautiful on the inside. I will tell him that he should take good   care of his woman so that he won’t be ashamed of her kwete kuzochiva vari kuchengetwa nevamwe (not covet women that other men look after). When he’s looking, I’d advise him to pray for a God-fearing wife…and never to expect miracles from a wife he would have met at clubs and pubs. I’d tell him that it’s not always about finding Mrs Right but the question is if he is the right guy. And he should get to know the girl’s family first because in our tradition, you don’t marry one person but the whole clan. And look at how well the mother has aged so that he can picture her 40 years down the line ha-ha *tongue out*. Not forgetting one important aspect, he should find someone with at least a basic level of education; even form 4 to begin with. An illiterate wife can be too costly and a constant source of embarrassment, which will tempt him into extra marital affairs with educated ones. And no matter the circumstances, he should never raise his hand to a woman, NEVER! We should be good examples as parents because no matter how much we talk, if we do the opposite they are bound to copy that, especially the fathers. They should be positive role models to their boys. And moms, be an example of an ideal wife of course because when boys search for a wife, they look for a woman who resembles their mothers as much as possible in most cases.

CHIDO: My son, here is what I’ve learnt about marriage. Marriage is about friendship. Your spouse is your go-to person. You do not go behind her back or go over her, you go with her. Marriage is about trust and every day you are building that trust. One day you will need to withdraw from this trust bank, so deposit as much trust as you can in your spouse. Lastly marriage is about forgiveness. Marriage is made up of two great forgivers.

CHIEDZA: I would advise my son to not let anyone come between him and his wife and to treat his wife as his best friend – no secrets. Be very open about anything no matter how bad it is. He has to share his happiness and sadness with his wife and she should come first. Children are an added blessing to the marriage, but wife comes first because he came to know wife first before the kids.  Plan everything together with her and not make decisions alone. He has to consult her in everything.

TSITSI: Marriage is a lifetime commitment thus you need to settle with someone you really love. Take time to know your partner so that you will not discover some traits you don’t like when married. If there are things you don’t like, it’s best solved before marriage. Be faithful and honest. Everything should be transparent. Most marriages are failing because people are not faithful and honest. If there are any traits you don’t like in your partner be open and say it. Never pretend because eventually this might affect your marriage. Always respect your partner. Marriage is a mixed bag of everything thus you need someone who you will respect and love even in difficult situations.

GREATMAN: I would advise him to perceive marriage as a lifetime commitment that requires special attention from both parties, an arrangement where one gets what they give. Really would love him to perceive marriage as a process not an event. To get the best out of your partner, view them as a partner and friend instead of object to be bossed around. Most importantly, I would advise him to learn to be humble and apologise in case of a mistake and never tell a lie.

NGONI: I would tell him that I raised him to be able to treat people well, particularly women. Since marriage is meant for life he must take his time to choose a life partner and not bow to social pressure. There will be challenges in marriage and he must face them head on. He should not involve people in his affairs unless necessary. Treat his partner as the other half meant to complete him. Involve her in decision making but must also be firm as the head of the house (not be put under petticoat government). He should remember to make a balance between the two families in terms of social and financial support. Above all, treat your wife as you would want your daughter or sister to be treated by a man.

ERNEST: I will advise him on being content with his wife and always pray to God to protect their marriage, to love, forgive, be happy and have lots of sex. I will give him Psalm 91. It’s the verse we were given by our late friend who was a priest.

VITALIS: I suggest your article could be in two parts, courtship and staying together in marriage (!!!Vitalis was my O' Level English teacher y'all hehe). During courtship

1. Pray hard. It needs holy guidance.
2. Befriend first to see habits.
3. Go check how they live.
4. Should be a Christian.

Plus, my son, look for someone who’s loving, who is beautiful in your eyes. Find a people’s person who will love your relatives or else you will be isolated in the family. She should be well-behaved. She needs to be smart and a good cook. If it’s about marriage, you need to have cardinal principles to guide you: transparency, honesty, accountability etc. the truth is most good men are led astray by women and vice versa.

CEBI: My take would be to find out if he knows what marriage is. Knowing that marriage is a commitment not a feeling will make the union a happy one. Feelings change, so marriage should not be built on them. When you disagree on something you may feel unhappy but that doesn’t mean you’re not committed to each other. Beyond being a commitment, marriage is a covenant between two people. Proverbs 3:19-20… it takes wisdom, knowledge and understanding to build a marriage.

REJOICE: I would advise him to pray for his marriage, respect his wife, not to keep secrets, not to cheat, love his wife’s relatives. Stand by his wife always. He should communicate and to have fun.

PAIDA: Know her HIV status. Investigate sexual history; know her relatives, religious background. Level of education should not be the foundation of your marriage. Your choice should not be influenced by what you see on social media.

SEKURU MILTON: Ngaatsvage musikana ane chimiro chaanofarira kuti asazobhoekane naye mangwana. Azive kuti anogona kumuwana ari or asiri mhandara (kana amuda asiri mhandara ngaabve agutsikana naye asazozvidya mwoyo  nazvo till amen). Mukadzi haasi wekudzvanyirira pazvose. Asamhanyire bonde naye vasati vaitwa HIV test. Changamukawo kutsvaga nzira dzekufadza mukadzi wako pabonde. Ukapusa unotorerwa netwakachangamuka. Musikana ngaavewo mudiki ne4 years or more please. (He should find a girl with a physique that pleases him to avoid future frustration. He should know that she will probably not be a virgin, and if he loves her regardless of that fact, he should forever hold his peace till amen. Women are not to be oppressed all the time. He shouldn’t rush into sex before getting tested for HIV. Be sure to satisfy your wife in bed because someone might snap her away from you. The girl should be younger than him by 4 years or more.)

ANGELINE:  I’d advise my son to be an honest, loving and faithful man. To appreciate and treasure his wife, to be her best friend and stand by her no matter what, to respect and protect her and their kids whole-heartedly.

FARAI: when he’s old enough, I’ll tell him that marriage will be one relationship where he doesn’t have to win every fight, compromise is the name of the game.

NYARADZO: I will tell my son to love his wife but still asambunyikidzwe nemukadzi (he should not be oppressed by the wife) because at times madzimai tinotonga (women are control freaks). All I want is to see my son happy saka ndikaona asina mufaro or kana kandiudza kuti ari kutongwa ndinotopindira munyaya dzavo chete (if I see him miserable or if he tells me he’s being oppressed, I’ll definitely be involved in their affairs).

ERICA: conflicts are inevitable in every marriage. You will be married to a person, and every person is unique. In marriage learn to resolve conflicts and to work in harmony not fight over petty things. Marriage is a team of two, from a Christian perspective, to process life together for the Glory of God. Respect your spouse’s ideas even when you disagree with them.

OTTILIA: Follow your heart, your instinct. Marriage is successful if you are equal partners giving as much as you receive, and willingness to compromise. There is no head or tail in that sense. Knowing that the head would be useless on its own allows you to appreciate the importance of the tail (this is in a metaphorical sense.)

MHONDA: the wedding ring is the smallest but toughest handcuff ever made. Think twice before you decide to lock yourself in. Don’t get into marriage so that you can fall in love.

KUDA: I guess I would tell him to follow his heart and seek a friend, companion first before all glitz and glamour. The lady should be your best friend.

CLARA: Go for HIV testing and stick to the one you have chosen.

DORCAS: to put it simply – be a good husband and find someone who values him and values family.

MYSELF:  Your marriage is not likely to survive or at least be happy if you’re not friends. Friends might butt heads a few times, but they look out for each other, they like spending time together, they don’t do things that they know would hurt the other.  Be the reason why your wife would want to go around telling people that marriage is a blessing. Don’t be the reason why she goes on her knees every day with tears in her eyes and says to God, “You say you neither sleep nor slumber, where were you when I married this person?” Your presence in her life should add value, not take away anything from it. Marriage is about companionship and loyalty. It’s not about the woman worshiping the ground that the man walks on while he doesn’t make an effort to make her happy – to every king there must be a queen. It’s not about flowers that wither, clothes, or a car that she could very well buy for herself. Yes the material things count too, to augment the love you have for her, but they should never replace it. They’re not the most important; otherwise you’ll just be the cash cow while she continues to look around for other things that she’s not getting in the marriage. Do as you would be done by – if you don’t like to be cheated on, don’t cheat, if you like to be respected, show some respect, if you want transparency, be transparent, if you like being shady in the relationship, accept it when she does it too.  You’re getting married because you chose this woman. Don’t allow anyone, not me, not your father, or your sisters to influence how you relate to her. If she’s nasty, you’ll see it. Don’t let someone else be your eyes. A family that prays together stays together. It’s a tried and tested concept.

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