My experiences with domestic workers

Finding the right domestic worker is very hard.  I’ve had about 7 between 2006 and now. I have seen it all! It’s not easy to just take a stranger that you know nothing about into your home and live with them. I guess it’s also not easy on helpers to just find themselves in the middle of strangers and trying to fit in. My first helper seemed to be OK and we were together for about two years. When she left that’s when I realised how generous she was to neighbours with details of our lives, most of them fake.  She almost died in the house while aborting and we had to part ways. Then I decided it was safer to find an older woman because older women are reputed to be more stable and caring. Bad mistake! That woman was scary! She just fell short of spanking me and sending me to run errands for her. She was always angry and every time I was around her, I felt like apologising for something.  She would refuse to sit on the couch, preferring the floor, and slept on the floor as well. It was scary to leave her with my baby.  We parted ways again, and I was even terrified to tell her not to come back. After that I said no, I should get a very young girl I can manage, and my mother-in-law found one for me. She would go to her room and sit in the dark. I asked her why, and she said ndinoona zvekuona zviye murima (my sight is perfect in the dark!) I started getting scared again. Every time she ironed, she burned something. One day a glass lid broke into the relish and she just cooked the meat with the glass. We parted ways again. I started wondering if I was a bad person. The rest weren’t that bad but just didn’t last. And when my lifestyle allowed, I just did everything by myself.

The one that I have now has been with us since July 2014, that’s 3 years, 3 months and counting. That’s the longest I’ve stayed with a helper. People either say oh you’re lucky you got a perfect one, or you must be very patient! I don’t think you ever get a perfect helper. No one is perfect. I think I’ve grown from my experiences with helpers. My helper can’t cook to save her life. I do all the cooking every day! She can’t even clean very well and half the time I end up redoing chores behind her back because I know she would really have tried. Despite all her shortcomings, she has a heart of gold. She looks after my children like they are her own. With the little money we can afford to pay her, she buys chips for the kids when she’s coming home from the weekend. Twice she’s bought earrings for Rudairo; she’s like her personal doll and she loves dressing her up. She knows I love avocados and lemons, so when she finds people selling, she buys for me and when I try to refund, she says no, it’s a present (my eyes are welling up now). When I’m stressed about something, she gets stressed too, even though she doesn’t say much because we have a language barrier. I buy or bake cake for her birthday too as we do for all family members. You can’t treat someone who has been under your roof for three years as an outsider. One day a child scratched Rudairo badly at school. When we got home, Rudairo ran to hug her and cried. She saw the ugly scratch and cried too.  Earlier this month she lost her father. We sat, wept together, and she even asked me to help her choose a coffin. It was a little chilling but it had to be done. Burial here usually happens a week or more after death, so she had to be away for more than a week. She asked to come during that week to help with laundry. I said I would manage but I was actually really struggling and she knew too; my hands are always full. Laundry day I only managed to do it halfway before I had to go out for my other obligations. I came back to find her hanging the clothes after finishing up the washing. After that, she went back to her home.

I’m just very grateful that we found each other. She’s 4 years younger than me, and is exactly 2 weeks younger than my sister Susan, so she’s like a young sister to me. She’s the only aunt my children really know since I’m far from my three sisters. Every Sunday around 5pm my children will just be lurking at the gate, waiting for her. If she’s late, I see them getting stressed. Her work isn’t perfect, but whose is? I struggle with meeting my deadlines too. If you look past the imperfections, and she has quite a few, there’s usually a gem somewhere in everybody.   I always worry what will happen to her should we leave Swaziland, will she be ok? Will we be OK?

My travel journal

How I dealt with burnout

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

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

TRIP TO JOHANNESBURG

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

THE AIRPORT

A picture I took from the viewing deck

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

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

HARARE

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

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

THE POVERTY

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

Vendors in Harare

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

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

HOME IS WHERE THE LOVE IS

One of the sausage and cheese eating dogs, Rusty

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

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

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

My father makes the best Maputi nzungu combo ever!

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

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. 

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 mother's 5-year journey with Down Syndrome

I have been contributing to a weekly disability column in the Observer on Sunday since October 2016, which explains why I have more disability stories than usual . What a journey it has been! I have learned quite a lot about disabilities, attitudes around them, and their impact on families. At some point I felt it was better to have a child with Down syndrome than one with autism. I believed people with Down syndrome were generally higher functioning that those with autism.  Now I stand corrected. Down syndrome also has its own challenges that aren't present in autism - persistent  health problems for instance. Although the newspaper column was just labour of love, it was gratifying. I shall be stopping my contribution end of April, but will continue posting on my blog when i come across stories. The lack of awareness on cognitive disabilities in society makes  me realise that there is still a lot that needs to be said. Below is a story I wrote to commemorate World Down Syndrome Awareness Day. I'm grateful to Buhle for sharing.  

People with Down Syndrome
Picture sourced from the internet

The date (3/21 – month and day) was specifically chosen to symbolize a third copy of the 21^st chromosome in people with Down syndrome. As with raising most children with disabilities, it is a great challenge to raise a child with Down syndrome. It is an arduous journey usually characterized by frequent health problems and dealing with stigmatization in society.

Buhle* came forward to share her story about how she found out that her child, Bongani*, had Down syndrome and her five-year journey caring for him.  Following a normal pregnancy and normal delivery, her baby developed jaundice. It worsened as he could neither open his eyes nor breastfeed anymore. After his admission in hospital, the pediatrician said the baby’s features made him suspect he had Down syndrome, and  went on to talk about chromosomes, which Buhle did not understand much and had to read up on Google afterwards. “His neck muscles were very weak and his head dangled loosely from his head and I was worried he would never be able to hold his head up or sit on his own,” she said.

Buhle was advised to take Bongani to a lab to test for Down syndrome. After two weeks, the rug was pulled from beneath her feet when results confirmed that Bongani indeed had Down syndrome. She was advised to take him for physiotherapy. Buhle said she did not understand how the therapy would help her son and wept with very strong doubts that anything would help him.

Bongani was also found to have a hole in his heart and had to be taken to a cardiologist. The cardiologist said the hole was not very huge and if he got to two years before it closed by itself, surgery would be needed. “I cried a lot and asked God why this was happening to me yet I had had my baby at 27. I had been aware that children with Down syndrome usually came to women who had babies when they were older,” said Buhle.  Thankfully, the hole closed. Bongani was susceptible to colds and pneumonia, but following the closing of the hole in his heart, the ailments also stopped. However, when it gets cold, he still comes down with a cold but antibiotics usually sort him out in no time. Every time he got a cold, he would need to be admitted and that happened countless times. The improvement took a heavy weight off Buhle and her husband’s shoulders.

Adversity usually results in one of two reactions – devout faith in God, believing that He will heal your child against all odds, or distancing yourself from Him, bitter that He allowed such a thing to happen on his watch. Buhle said her faith in God never waned because she had adequate support from her mother, who had walked an almost similar path caring for a daughter with cerebral palsy, and her very caring husband. “My mother prayed with me, accepted the situation as it was, and smothered the baby with love,” Buhle said. She added that Bongani’s paediatrician has been another pillar of strength in her life, together with the physiotherapists who have worked really hard to assist him.

Five years down the line, Bongani’s condition has greatly improved. He is now learning to walk and still goes for physiotherapy once a week. Although he cannot talk yet, Buhle says he can hear and understand everything. He is still being potty trained, and Buhle and her husband have trained him to have bowel movement in the morning in his potty, and then wear a diaper to avoid wetting himself.

Bongani’s doctor recommended that he enrolled at a crèche with typical children and that’s where the battle began. Three crèches turned him away as they said they were not equipped to deal with Down syndrome. “I was really hurt. No one chooses to be in this situation, but God gave me this gift. I somehow expected society to understand that and accept my baby too,” said Buhle. The toilet problems have turned out to be the reason why some pre-schools will not accept him. Although some of them take 6-month-old babies in diapers, they are not prepared to take care of a 5-year-old wearing diapers as well. Bongani eventually got accepted at a crèche based at church premises where he is very happy, which has also put smiles on his parents’ faces.   

Bongani’s brother, Sicelo, occasionally asks when Bongani is going to walk. Buhle said she simply told him that she was taking him for physiotherapy in order to make that happen. “I feel he is too young to grasp everything now. I will tell him everything when he is a bit grown up, but I think he has seen that our baby is different from others.” Bongani’s personality is starting to take shape. His mother says he is ever-smiling and is besotted with his father. He also loves to imitate everything his 9-year-old brother does and even has his own favourite cartoon series, Tom and Jerry. Buhle said all she wishes for her son is to be an intelligent big man, able to do everything on his own rather than be dependent on his parents or other people. “My biggest fear is that society does not know much about Down syndrome. I am scared that my son will be stigmatized and that will deal his self-esteem a big blow. I want to be an ambassador to inform society that people with Down syndrome are also equal human beings despite their condition, and they must be accepted and treated like everybody else,” said Buhle.

Many parents of children born with cognitive disabilities, especially of a genetic nature, are usually wary of having more children. Buhle is however undeterred. “I want a baby girl next so that she can play with her big brother. Of course, I am afraid of history repeating itself, but my trust in God is stronger,” she said. 

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.

The lonely world we live in, and being dark clouds in other people's lives

To Marguerite: Continued

 BY MATTHEW ARNOLD

 Yes! in the sea of life enisled, 

With echoing straits between us thrown, 

Dotting the shoreless watery wild, 

We mortal millions live alone. 

The islands feel the enclasping flow, 

And then their endless bounds they know. 

A high school friend took his own life by drinking a pesticide towards the end of January. He left a suicide note in the form of a video, and it appears the reason for why he had to die was because of a failed relationship. It is always a very sad day for me when someone commits suicide. It indicates that he felt his problems were too big to be solved, that no-one could help him, and that because of that problem, it was better not to breathe anymore, never wake up to see another day. That’s just downright sad.

Regarding this friend in question, what was particularly sad was that he was a pastor and musician with many people rallying around him, close to a thousand Facebook friends, yet he still felt alone in a dark bottomless pit.  The world is so fickle. Many of the relationships we have are actually quite useless when push comes to shove. There are really no life guards looking out for you waiting to save you. Everyone is absorbed with their own problems and not many people care enough to really follow through even when they can see that something is amiss. You just have to save your own life. When you feel yourself going off the rails, talk to someone. It’s time we started having some faith in counselling, and removing stigma from mental illnesses and acquiring as much information as possible on them. Recently in Swaziland, a man tried to hang himself but was fortunately discovered on time. The first thing the Good Samaritans did after saving him was give him a good hiding. I found that really appalling. How does beating up an unstable person help?

Following his death, quite a few people came forward to state that it did not come as a shock that he took his own life because there was always “something about him”. Yet no-one, especially his loved ones, tried to get him help. . This guy had attempted suicide a few times before and I wonder if he received any counselling. What happened to being your brother’s keeper? Society needs to be educated on how to handle situations where someone is a danger to himself and others. Sometimes we might even propel someone off the rails because we don’t know what exactly to do and end up saying the wrong things. Some years back on his Facebook page, someone was asking him why he wasn’t married yet, and he responded to the effect that a previous relationship had nearly cost him his life (through suicide!)Why do people ask personal questions like that on a public forum and cause unnecessary embarrassment, make someone feel inadequate because they haven’t done this, that or the other?

Another thing that was particularly distressing was that this departed friend, in his suicide note, blamed the woman in his life for taking his life. That was quite unfair, in my opinion. But bearing in mind that suicide is precipitated by an unstable mind; I can’t say I blame him. He was definitely not himself. I don’t really have the 411 on what really transpired, but nothing is worth taking your life for. Relationships collapse all the time, people get disappointed, and people move on and find happiness all the time. Your life can’t depend on one person. You can’t force people to want to be with you. How is that woman going to sleep at night after such utterances were made regarding her role in the death? She’s likely to always going to have a dark cloud hanging over her.

We need to be very careful what kind of people we bring into our lives. Sometimes your life will be heading in a glorious direction – until you get involved with someone who will just derail it for you and take out all meaning out of it. Sometimes things happen in your life, and if you are superstitious, they can make you think you are jinxed, when in actual fact you just have a toxic person in your life who continues to sap your energy, and before you know it, you have also developed mental health problems caused by the negative energy engulfing you. People should get their issues sorted out, because if they don’t, they become a dark cloud in other people’s lives.

May my late friend’s soul rest in peace💙

. 

Celebrating my strange connection with Black aka Colin Vearncombe

Black aka Colin Vearncombe (Picture from his Facebook page)

 (26 May 1962 – 26 January 2016)

Everyone has that song that takes them back to an occasion and makes them either smile or feel a pang of nostalgia or pain. For me, that song is Wonderful Life by Black aka Colin Vearncombe. I actually don’t remember how that song found me. What I do remember, though, is that it was when I suffered some misfortune far away from home and all alone in October 2012. I added it to my playlist on YouTube and played it over and over again. It was like a special message that Black had for me. Of the views that the video carries on the platform, a few hundred could be mine J . That track carried me through one of the most difficult times of my life, and every time I felt tears threatening to well up, I’d play it and immediately felt better.

It got to a point where I had such a strong connection with the song that I felt like I knew Black personally. Like I’d one day meet him on the street or I’d find an email from him asking to meet for a cuppa and ask, “So Charlotte,how are you feeling today?” I know it sounds crazy; it probably is! But sometimes when you're in a bad emotional place, you need something to hold on to. I held on to Wonderful Life. Music speaks to me. I was very heartbroken💔 to hear of his death in January 2016, just a few days after it happened. I had visited the video again and saw a comment, “Rest in peace Colin Vearncombe.” I wondered who that was and googled the name, only to realise that was Black’s real name. Oh I was gutted! Then today I was playing that song again on YouTube and realised it was the first anniversary of his death (must be that special connection again that took me there!😉). I continue to be sad. He still had a lot to offer to the world. Because of the connection I felt with him through his song, I worried about his family and how they were coping with their loss. I pray they are fine. I did manage to write in his memory book on his website, and feel good about that. Thank you Black for the lovely music. May your soul rest in eternal peace. May the Lord keep his family strong❤💓.

Be Autism Aware in 2017

I am looking forward to another year of highlighting issues affecting individuals with autism and their families. There are still many people who don’t know what autism is, and that is unfortunate seeing it’s a condition affecting quite a sizeable population in the Kingdom of Swaziland. Hopefully as the year progresses, that number dwindles as well.  When people are informed about the condition, they won’t be compelled to judge harshly when they encounter affected individuals. Also, many parents are struggling with their children at home and not seeking intervention because they don’t even know their children have autism. Please take time to read up the condition. There are countless online resources; you never know when that information might come in handy. 

One day, Simphiwe*, whose son is autistic, was at a community meeting in Ngculwini when a woman called out to her, “Make wemntfwana longaphile engcondvweni!” (Hey mother of the mentally ill child!") Simphiwe said she was heartbroken by those words and did not understand why that woman had simply not asked for her name. That’s how bad things can get when you come across grossly insensitive and uninformed people.

It’s not just strangers that stick daggers into the hearts of parents with autistic children. Loved ones also do it. The festive season is one of the most awaited times of the year when families get together and be merry. For families affected by autism, it is usually a trying time.  It is hard to participate in family and social gatherings because sometimes autism comes with hyperactivity, sensory issues and poor social skills. If the music is too loud, or the crowd too big, the autistic child can have a meltdown or spend the day with his hands over his ears. If you are the parent of such a child, it is difficult to turn a blind eye to this and just have fun. You end up also having a distressful day either trying to quell the meltdown or make your child comfortable if he’s in distress. Given a choice of whether to spend the day in the company of family yet not partaking in any of the activities because you have to keep an eye on your child, and just staying at home where the child is used to his surroundings, most parents would choose the latter. You stay at home with your child, you don’t have to spend the day explaining his behaviour to anyone, and your child is calmer because he is in his own turf. It does get lonely, though. Sometimes staying away from functions can also be imposed on the family of the autistic child. People might never want to invite you again for fear that your child might break things or disturb the peace, be the “party pooper”, basically.

At family functions there will always be that aunt who will shout in front of everyone that if you spare the rod you spoil the child, but people need to understand that no amount of beating will control the negative behaviours that emanate from autism. It is a developmental problem, not a parenting one. A Mbabane mother to an autistic girl said even though she was naturally a sociable person, her child’s condition had transformed her into an antisocial person. “If I go to a family gathering and people are trying to converse with my daughter, how many people am I going to explain to that, no she can’t have a conversation?” Between managing your child’s behaviour and swallowing the lump on your throat caused by all stinging comments being fired in your direction, there is usually not enough time and energy to explain things.

Family gatherings are also the time when family members share snippets of how well their children are doing at school, what sports they are excelling at, and the clever things they say. Meanwhile, you might still be trying to toilet-train a 6-year-old or trying to teach an 8-year-old to say “mum” or wave properly. (Many children with autism take long to learn to use the toilet. An article on Autism Speaks website attributed this to the general developmental delay that many of them have, difficulty in breaking the long-established routine of wearing diapers, and communication challenges. Some children with autism also have delayed speech, with some finding their voices as late as 8 or 9 years of age or never speaking at all.)

Sitting in the middle of people exchanging progress reports about their typical children is bound to make the parent of an autistic child left out and feeling sorry for him/herself and their challenged offspring. The progress reports are not even the worst of it. Things start to get really ugly when people start to compare their children with your autistic one. I remember a time when my own son was about 4 years old and still had a vocabulary of about 15 words. A friend, whose son was less than 2 years old, dropped by and went on and on about the intelligent things her son was already saying and how very balanced he was for a little person his age. When she ran out of her stories, she ‘modestly’ said, “Oh listen to me going on about my clever child to a person whose son can’t say anything!”

Of course the festive season is gone, but there are still birthdays and other smaller functions during the year. Do invite folks with an autism child too. Ask them how best you can help to ensure both child and parents enjoy the event. Not all autistic children break things, but if you know the particular child you are inviting does break, rather move the breakables out of his reach than shun his family.  And don’t compare that child with your own.