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.

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Happy Birthday Victor!