Know the autism red flags

Autism Awareness Wall at Enjabulweni School, Swaziland

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

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

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

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

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

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

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

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

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

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

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

*Names changed on request

Additional information from firstsigns.org and Autism Speaks website  

A mom shares her autism story

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

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

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

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

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

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

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

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

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

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

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

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

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

Autism: A mother's tale

Today is Autism Awareness Day. In the US, autism affects about 1 in every 68 individuals. It can manifests in, but not limited to speech problems, learning difficulties, very short attention span, poor communication, hyperactivity, poor social and/or motor skills, and in numerous cases, behavioural problems. A child can have some or all the mentioned, or even more. Some people are autistic and blind, autistic and deaf, autistic and epileptic, autistic and HIV positive and, and, and... Know the red flags for autism. It cannot be cured, but it can be managed with therapy and/or medication. Intervention is particularly important in the formative years. Below is a mother’s story about her journey caring for her 5-year-old autistic son:

My name is Sphiwe, I’m 30 yrs old. I had my son Sipho when I was 25.  His father and I were married and got divorced when he was one, but we separated in the first trimester of my pregnancy. I think I encountered a lot of stress during my pregnancy, but I thought it was all under control because I really had time to think about it. I remember saying to myself, “I’m better off alone and happy to raise a happy child, than thinking I’m with someone yet I’m actually alone” because he was never there, he was irresponsible. He was an alcoholic, I think, when I look back. I thought I’d made the best decision. I had a lot of support from my family, though. My mom was great. She’s widowed, my father died a while ago.  I had my baby via elective C section because I’m afraid of pain. I thought if I go into labour I might lose my mind.

My baby was normal with an Apgar score of 8/10, so that was quite good. He fed well and would cry a lot as a baby, but with time he stopped crying. He was the most peaceful, most loving baby I could ever have.  I started noticing that something was wrong at the age of two, but all other developmental milestones like sitting, crawling, walking were met on target. He was walking by the time he turned one, he was mumbling sounds. He was doing everything on point so I thought I had a normal baby. But by the age of two, I realised my baby was not calling names, and at that age they should be saying mama, gogo, or the people that they live with. So I sent him to pre-school.

He spent about a term there. He would sleep on his way there, sleep on his way back and I thought, “Ah shame, he’s still young,” but I wanted him to interact with other children to see if he would pick any names or any vocabulary. It didn’t work. He spent the rest of that year at home, but when he turned 3, I sent him back to pre-school. That’s really when I started realizing something was wrong. After a year of being at school, my son would not mention any names. He would not say, “So and so, teacher so and so,” but he sang a lot. He would listen to a song once, and repeat it word for word. I remember when he was singing a gospel song, a very deep one, and this friend of mine said I should stop taking my son to night vigils. It was a big joke - my son the singer.

But I knew there was something wrong, and as a Psychotherapist I took out all my books and started reading. I remember one day sitting at work and I came across Childhood Disintegrative Disorder, which is very close to autism, whereby children grow and then they regress. Because I thought, he grew normally and started to regress, and then I started to cry. I called my mom and told her my suspicions. I think she knew because she just ran to me. She dropped work and she came. I think she knew something was wrong with my child but she didn’t want to say it. She was hoping it’s not true, but when I was saying it she couldn’t say, “It’s not that,” because she was suspecting it all along, I think.

So we started reading around it, and saw it’s closely linked to autism. I tried to call Autism South Africa to get hold of a doctor that would at least confirm my speculations. Yeah, I called every pediatric neurologist in the Gauteng region, and I think it was six months before I could get the earliest appointment. All of them kept putting me on waiting list. I started looking in KZN and I stumbled across a pediatric neurologist in St Augustine’s Hospital, who could see me immediately, Dr Crutchley. Before going to Dr Crutchley I went to the Psychiatric Hospital. I came across a Dr Dlamini, who immediately put my child on Epilim, which is medication for epilepsy. I learnt late that she was not qualified to make that diagnosis to that point, to put my child on Epilim. I always get a second opinion, being a medical person myself. Before I give anything to my child, I read about it. Then I went to DrP etsile who was his GP from birth. I asked, “Can I give him Epilim?”And she was so mad. So she told me not to give it to my son because she said the side effects were more deadly. She just said your child is not that bad. If you give him Epilim he’s going to be drowsy all the time and he’s going to start drooling, all those things, he’s going to become dead, almost.

My son was hyperactive. He would jump, he would run a lot. I learned when I went to see the pediatric neurologist who confirmed that my child is indeed autistic, that even the tip-toeing, the repetitive movement, all that are signs that we overlook as parents, the many birthmarks that he has, I think he’s got about nine little marks on his body, things that other parents can look out for at an early age and help their children. He told me about the crying. He doesn’t cry. If you take something away from him, he’ll just make a sound, a crying sound like, “heeeh” and then it’s gone. He forgets about it and moves on to something else. He’s not a crying baby.

I came back depressed as ever. I couldn’t talk to anyone because not many people know what autism is. They don’t even understand what you mean, and they just keep thinking you’re fussing over nothing: your boy will be fine, boys talk late, you were also not a talker as a child, his father doesn’t talk much. Some people thought it was because of the separation,  that his family was not happy with me taking him away from them, and I was supposed to take my child back to his home. The father and his family don’t communicate with us. It’s like Sipho doesn’t exist as far as they are concerned. My mother tried to go and make peace with them before we went to see the doctor. They never came back to find out how everything went. My mother was afraid that we would get there and be told my child had to have an operation, what if the child didn’t come back from theatre? Now we would have to go and say your son is dead, and we wouldn’t have told them in the first place that your son is sick, so that was her justification. She didn’t tell me, she hid it from me because I wouldn’t have consented to taking my child to people that don’t really care.

It’s pretty much been a rough journey, just me and my son. Right now I discovered Enjabulweni Learning Centre where he goes for occupational therapy and speech therapy. It’s been a marathon,oh it’s been a marathon. I hear about this and I run because as a mother you can’t just sit and say he’ll come of age and it will go away. You want to make sure you’ve done everything, it’s very tough. I remember reading an article once and the first line said: If you have an autistic son there are two things you need to grow immediately, a thick skin and a thick wallet. And I thought to myself, thick skin, perhaps, wallet? Where can I grow a thick wallet in Swaziland, how?

There’s very little support, there’s very little knowledge. I go to public places and people still look at me like I have the naughtiest child, like I’m the spoiliest mom ever. They ask questions in the most hurtful ways. Even in the workplace, I work in a hospital and when I take my son there I struggle. Half the time, I’ll take him to a private clinic where there are few people and I don’t have to doalot of explaining. He’s a very sickly child. He has a lot of upper respiratory tract infections,from time to time he has sinuses, he gets ear infections and he gets throat infections, has a productive cough for long, and he keeps getting antibiotic jabs. We can’t have him admitted because he pulls the drip off.

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Days like that bring me down to my tears and break me, really, really break me, because I’m reminded I have to hold him with lots of power and force because he’s very strong. He’s crying, I can’t explain it to him; he can’t comprehend what I’m trying to tell him even if I tried to explain it to him. He can’t get the best treatment because you can’t put a drip on him, you can’t do anything.  He has rotten teeth from his dummy, and I can’t get a dentist that can pull them out.

Once I took him to Pretoria for an MRI that the doctor had ordered. We drove all the way to Pretoria, spent the night in a hotel and had to drive back without getting it because he was not easily sedated. He kept on saying,“Sukuma, stand up, asambe,let’s go,”each time they tried to put him on the machine. I cried all the way back, thinking of how much money I had spent going there and coming back and having not achieved anything. I have a lot of support, I don’t want to lie, especially from my mum.

He has improved. He has developed a lot of speech, even though he’s still parroting a lot. He’s still repeating what I say. He knows how to greet, his name, where he comes from, how old he is. At the age of 5 that’s a big achievement, for me. He would wave backwards, he would wave at himself like John Cena. He has learned to do it correctly. We had to take him to the mirror to learn to wave.

He goes for EEG sessions to help with brain stimulation for concentration in Ermelo, so I have to drive every Friday. So I understand now what that article meant by grow a thick skin and a thick wallet. But it’s not easy. We live in a country where we don’t talk about these kids. So many people have them. Some people don’t even recognize what it is, and we don’t have structures that help, but hey, it’s one day at a time.

Sometimes you’re angry at God and say things you don’t really mean, but you say them anyway because you’re angry. I will sit and cry through the night, and I fight with God in my prayers and tell him if you don’t make my son well, then take him. Sometimes I contemplate suicide but then I think, but if I go, who’s going to understand my son. I need to be there. But it gets better.

The whatsapp group of parents with autistic children in which I’m a member is God-sent. It’s the best thing that could have happened. People can think they understand what you’re going through but they don’t. What you feel as a parent, no-one else can feel. It’s the biggest pain.You know, you get an HIV positive baby and you know if she takes the right meds she can be OK, you get a baby with diabetes and you know if you give them the right kind of food they can be OK. With autism, they say don’t give them food with preservatives or whatever but it still won’t go away. You can never say my child has been cured of autism. That’s the first thing that Doctors tell you when they diagnose these children, that it’s a lifelong condition. Your child will forever be autistic. The best you can do is teach them how to adapt, how to live in society. I’ve made peace with it and I say if only I could get my son to talk, get around on his own, and take care of his personal hygiene...

He likes drumming, he drums on his head, and he drums on anything. My mom bought him a set of drums for his fourth birthday. It’s crazy, I’ve learnt to love that sound that he makes from the drums because he’s happy when he’s doing that. He likes to break trees and make little microphones and sings. He sings a lot – from your gospel, to your kwaito, to your R’nB, your adverts on TV, he will say them word for word. It’s amazing how these children function, because it’s like they have a vocabulary somewhere. They are just not using it. I always say to people, “My son talks, he just doesn’t talk to me”. And I translate that to: He has vocabulary, he just doesn’t communicate. He’s not dumb, he can talk, he just doesn’t communicate because there’s a difference between talking, just uttering words, and communicating.People struggle to understand that but that’s the best explanation I can give for his condition.

He has learnt now how to use his speech to get what he wants, so he willcela (ask). “Ngincela kudla, ngincela kugeza” type of speech, but he only understands speech to be used to get what he wants, not to express himself, how he feels.

He’ll cry when in pain and I don’t know where it hurts, and nothing hurts like that as a mother. We need to monitor him every day, it’s like you have an overgrown baby. He’s a big baby, you can’t carry him anymore but he’s still a baby and you have to hold his hand for the rest of his life. It’s straining, it kills your spirit.I don’t have another child, I don’t think I’ll ever have because I’m afraid. I wish he was not my first child then I’d know I’m capable of producing normal babies.But now, no-one can explain where autism comes from,  and what if it’s me, it’s my genes, it’s my hormones. I don’t want to take that risk again. If I had to do it, I’d die, because already it’s like I have 10 children already.

When he started tip-toeing, I took him to see a podiatrist, a person that specializes in feet, and told her my baby can’t put his feet flat on the ground. And she said, you know, your baby’s feet are fine. He just likes to walk on his toes, I went to a hearing somebody – his hearing is fine. He responds to stimuli in all directions, speech therapist – his tongue is fine. Everything was ruled out, everything.And all the time it was costing a lot of money. All the time is was draining to go and come back and think, OK, it’s not that, he’ll come around. You wait for a couple of months and you see he’s still not coming around. Then you spot another difference that makes him stand out from other kids, find another doctor, travel to South Africa…

I wish more people could speak about their condition. I wish we had an association and we could talk about it, so that even nurses are able to recognize it when we bring our children for immunization. Autism is trial and error. It’s like your child is crying and you immediately think probably they have a temperature, and you give them Panado, probably their pants are wet, you change, probably he’s hungry, you give him food which he doesn’t want. You keep trying everything, everything, everything like a little baby, and yet this is an old man.

I’d like us to have a centre where children can get OTs, Speech, EEG, all these services, besides being an NGO for advocacy. A neurologist can come once a month for 2 days and we can schedule our children, and they can see if they are progressing.  We are willing to pay, than drive all the way to Durban to see a neurologist and pay R5000 for consultation. We can even get sponsors who can pay the neurologist to be in Swaziland twice a week, we can get hotels saying they can sponsor their accommodation for the two days that they are in the country to see your kids. That’s what we should be working towards – easing the financial and emotional drain on ourselves. We, the parents in the town, regardless of how elite or affording we may seem, are really drained and we could use the support. I’ma single parent, single in the truest of senses. I have to pay my maid. I have to buy food. I have to pay school fees. I take him to Stepping Stones, which is about R12 000+ a year, I take him to Enjabulweni for therapy, which isR360 per session. After four sessions in a month, I owe them R1 300. In 10 months, I owe them R13 000.  If you add that to the school fees I’m paying… I can’t wait for him to be of age and go to Enjabulweni full-time so that I just pay school fees and the therapy is included. I still have to pay transport for him. I drop him in the morning, but I can’t be there at 12 every day to take him home. Sometimes I’m stuck in a meeting. So I got a private taxi. He can’t be on the school bus. I need someone who will understand – put his seat belt on, and lock the doors, take him home, and makes sure he hand delivers him to the nanny, not drop him off at the gate because he might wander off and get lost.All that is emotionally draining.  My maid has to buzz me at 1230 to let me know he’s home, otherwise I won’t stop worrying until I know he arrived, the driver didn’t forget him. I need to buy special food, like 100% pure juice, everything, fruits, it’s draining. It’s costly. I could do with a support centre.

I go to school in the morning to drop my son off and the teachers will be complimenting me, “You’re a great mum, you’re doing so much for your son. We’ve seen so much improvement.” It will send me to tears. It’s a compliment but it will send me to tears. It breaks me to think, I’m being cheered for being a good mother because my child is a special case. No one is cheering all the other mothers out there for doing the right thing. Why am I different? I am different, but do I want to be reminded? I don’t know. Do I want to be ignored at the same time as if I’m not doing anything? I don’t know. It’s an emotional roller coaster, you want people to care but you don’t want people to care, you don’t want people to pay attention.

I want people to say what are you doing this weekend? And I say nothing, and then I want people to say,“You deserve a break, can I come and borrow Sipho for the day?”My brother, perhaps, and his wife. And they take my nanny with them, they take the children away from me and I can switch off my phone, and I can sleep in, and I can play music in my house, and I can do what I want to do, just for one day.  Just for one day without worrying that my son is at home with the nanny, and in the event he develops a temperature, I need to rush back. He’s with my nanny, and he’s with adults that can take care of any situation that arises. It would be nice.

My brother will say you’re overly engaged at church and at work. You’re always doing projects. They’re overworking you.They forget you have your own problems. And I say what else would I do to distract myself from my reality?Because this is my reality. If I decide to sit in my reality, I’ll sit for the rest of my life. I will never be productive. But if I can do something nice, short-term and there are results, if I put together a campaign and I see it coming together, I’m happy. I feel worthwhile, I feel needed, and I feel like I’m contributing meaningfully to society. And for a moment there,I just get caught up in this event and forget because already I feel like I’ve failed as a mom. And people don’t understand that. Your family, especially my mother. Right now she’s happy with the whatsapp group, but in time she will start saying, “You’re giving too much into this group. Are all other mothers going all out like you are? Why are you always giving 110% to everything?I do that because it makes me feel that I’m capable of perfection, I’m not just a vessel of dead ends or of imperfection, rather. “Dead ends”sounds too harsh.They want to support you but want you to behave in a way that pleases them, in a way that makes them feel you’re a good mother, not like a human being worthy of something.

HIV – people understand, Cancer – people understand, but autism is not spoken about, yet it’s so common. I always tell my nanny, when they go out to play in the yard, that she has to close the gate because it’s a block of four flats. We all use one entrance. Some cars will come in speeding because it’s a slope. “Close the gate when people brake, so that when they have to open the gate, you find him and you remove him from the road.” Because the thing with autistic kids is they aren't able to perceive danger. They could all be playing on the driveway, then when a car comes, others will run for their lives. He won’t know. He’ll only run if he’s just imitating the others, but he doesn't know why he’s running. He can’t understand that he has to run to save his life; it’s not there in his mind. How would I blame someone for running over my child or even parking their car, coming out, taking their belt and whipping this boy for being naughty and not moving from the road? Not knowing that my child is autistic because autism is not physically visible.  They seem like perfectly normal, very cute kids.

Related:
Happy Birthday Victor!

Autism Awareness

The month of April is upon us and we are commemorating Autism Awareness month. It pains me to the core that for a condition that affects so many people, so few people are aware of it.

I've stopped counting the number of times I've told people that my son was autistic and they asked, "What is that?" After telling them what it is, they go on to say, "Don't worry, he'll be fine. It will go away." That's the kind of ignorance I have to face more often than not.

One of the difficult things about autism is the fact that it's a condition that's not visible to the naked eye. A child that is autistic can look perfectly normal, and when he misbehaves, people just think he's a spoilt brat.

When people invite me to their homes, I'm always anxious about accepting the invitation if it means I have to take my son with. This is because he knows no boundaries. If he's hungry, he'll simply march into the kitchen and ask, "Whose sausage rolls are these? I'm hungry!" And as I desperately look for the nearest sandpit to go and hide in, the gracious hostess will pretend my son is really cute for being forthright. I hate to think what some people say about my parenting skills behind my back. But over the years I've learned to develop a skin the thickness of five rhinos to cushion myself from unwarranted opinion.

I'm up to the ears in unwanted advice on how to deal with my son's behavioural issues. I don't go around dishing advice to people on how to raise their children, so I don't understand why I should be receiving advice I don't ask for.  

When my son was diagnosed at the age of four, I thought I would never smile again. I felt like I was walking in a dark, dense and scary forest all alone. I met one woman at Dischem Cresta who was with her teenage son. We chatted a little and she told me her son was autistic. I also told her mine had just been diagnosed before bursting into tears. She gave me a hug and told me one day I'd feel better, even though for many years to come I'd still cry sometimes. I didn't believe her. 

Four years down the line, I do feel better. I will continue to have moments of sadness over the fact that my son has this condition, but I'm not weepy all the time anymore. I try to focus on and rejoice in the things that he can do, rather than agonise over those he can't. Because of him, I have become a very patient individual. If I had continued to be the person I was before, I would have popped a few veins because progress comes slowly, in his time, on his terms. I remember spending almost a year teaching him colours and failing to get through to him. But one day he just started pointing out the colours of cars driving down our road. 

I have to be patient when he won't stop asking questions about what's happening on TV or around us. That's how he learns and acquires vocabulary. 

It's alright for people to commiserate with families of children with autism. It really is a hard road to travel for most families. There are, however, things I wish people wouldn't say when they talk to parents of children with autism. Victor never forgets the names of people he has met. Sometimes we have to ask him for people's names after we've forgotten them, and he always gets them right. When he greets people by their names, some immediately have this funny expression on their faces and funny tones in their voices and say, "wow, he remembered me!" Who ever said he's incapable of remembering anything? Then there are those that think all autistic children will be able to compose music like Mozart. Others just look at him and declare he's going to be a mathematician because they watched the movie Mercury Rising, and are sure he's going to be like that little boy who deciphered difficult puzzles. But autistic people are about as identical in their behavioural patterns as chalk and cheese.  If you see one autistic person, you definitely haven't seen them all.

I've also had a couple of weirdoes expecting him to line everything up as soon as they hear Victor is autistic. While obsessively lining things up is a tell-tell sign of autism in some autistic children, it's wrong to assume every child with that condition will do that.

Lining toys up is one of the symptoms of autism, but not
every autistic child does that

I must have missed the memo that gave people the authority to psycho-analyse other people's children and talk about them in third person in their presence, something they wouldn't do to their own kids.

And the line, ”God gives special kids to special parents, he gave you an autistic son because he knew you would be able to take care of him“ really doesn't do it for me. Would it be right to walk to a cancer or diabetes patient and say to them, ”Oh, rejoice and be glad, God gives special diseases to special people"? Of course it's wrong on so many levels. Why then should this line be shoved down parents of autistic children?

We didn't sign up for children with autism. Life is difficult enough without opinionated people bombarding us with their judgements and diagnoses on a condition they barely understand. It's OK not to be a Smart Alec about everything. Sometimes all one has to do is ask questions, or listen carefully in order to understand.