Know the autism red flags

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

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.

Be Autism Aware in 2017

Happy New Year to you all. Here’s hoping everyone had a restful festive season filled with love and joy. 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.

Children with special educational needs should not be banished from regular schools

The story headlined “Build more special schools” in the Swazi Observer of November 21 was quite an upsetting read. A senator moved a motion in parliament to the effect that, with funds permitting, government should build more schools to cater for pupils with special needs, because “an ideal situation would be to separate pupils according to their needs to avoid lowering the standards just because teachers are trying to accommodate slow learners.”

He was also quoted as saying the inclusive nature of the country’s education system had a potential to compromise the quality of education in the country’s schools. No offence intended, but the education system in Swaziland can hardly be described as inclusive, especially when it comes to children with intellectual disabilities.  Whole families are moving from far and wide to chase a handful of schools that can accommodate their children in other areas. Children with special educational needs are commuting long distances for the very same reason.  Inclusive education means that all students, with or without disabilities, attend and are welcomed by their neighbourhood schools in age-appropriate, regular classes and are supported to learn, contribute and participate in all aspects of the life of the school. When there are still allegations that “slow-learners” impede the progress of other students, then it means there’s piece of the puzzle that’s still missing. With the right kind of support, there will be a way around accommodating all students without fear of those with learning disabilities disadvantaging anyone. That would be inclusive learning.  There is well-documented evidence that when typical learners and those with disabilities learn together, there are good results academically and socially. 

Susan Nyatanga, a trainee special needs teacher from University College in Denmark said suggesting exclusionary policies when research is showing that students actually mutually benefit from being in mainstream schools is not only retrogressive to societal development, but also promotes discrimination of the special needs learners. “Instead of arguing that they lower educational standards, why not test them according to their abilities? When teachers are trained properly, they are equipped with many methods through which they can assist all children according to their abilities. A progressive argument would be on how best to train the teachers to enable them to teach the children with special needs, or what can be done to equip schools to accommodate these children. As educationists, if we restrict their world instead of expanding it, we would have dismally failed,” she added.

Howard Gardner’s Theory of Multiple Intelligences argues that we should not have the same test for everyone. Children have different talents and should be tested according to those talents and their level of functioning.

Nyatanga said most special schools in Denmark were actually being gradually dissolved as the country moves towards integrated education. The whole world is moving towards that. The UNESCO World Conference on Special Needs Education, held in Salamanca, Spain in 1994 made very important provisions which Swaziland would do well to adopt. One of the recommendations reads, “…those with special educational needs must have access to regular schools which should accommodate them within a child-centred pedagogy capable of meeting these needs.” The conference called on governments worldwide “to adopt as a matter of law and policy the principle of inclusive education, enrolling all children in regular schools, unless there are compelling reasons for doing otherwise.” If Swaziland is moving towards First World status, separating children based on their educational needs should not even cross anyone’s mind. If we seclude them, what will do next? Build a little world for them to live because they are deemed slower than others?

Swaziland has its own success stories in inclusive education. Inclusion does not necessarily mean all learners will always be in the same classes. There can be a classroom for those with special educational needs, where their strengths are assessed. They then join other classes for subjects they are strong at. Enjabulweni School is doing it, with very good results. They have the Paiva Learning Centre where children with special educational needs are based, and those that are strong in certain subjects join the mainstream classes for those subjects. All children with or without learning difficulties participate in school plays, sports and all activities. Stepping Stones opened a class for autism this year and is also doing very well with inclusive learning, as you will read in next week’s instalment.

Schools are not all about academic achievements.  They are also places where children’s outlook of the world is cultivated. It is where they are taught to discriminate or embrace those that are different. What will be teaching typical children when we say those that don’t learn at the same pace as them should be isolated? The excluded children will be deprived of the opportunity to socialize; the only world they will know is that which comprises people with their challenges. Children learn from socialization. The world is bigger than whatever challenge the children might have. Inclusive education in regular classrooms minimises the likelihood of a child with disability becoming an adult segregated from broader society.

There could be some parents who would prefer special schools over mainstream, depending on the condition of their child or other factors. The research that I have done, however, indicates that many parents of children with learning difficulties would rather have them in mainstream school, with a separate class where they can learn at their own pace. They are just children at the end of the day, and their disabilities or conditions should not define them. They should all be treated like equal citizens, not a burden that should be eliminated from mainstream schools and be condemned to some other corner like lepers. The Salamanca Statement recommends that governments should promote parental partnerships so that parent representatives are involved in the design and implementation of programmes intended to enhance the education of their children. Parents should have a choice and a say over where to place children with special educational needs. Currently Swazi parents do not.

Published in Swazi Observer on Sunday

Education struggle is real for people with autism

Autism spectrum disorder (ASD) is a group of developmental disabilities that can cause significant social, communication and behavioral challenges, in varying degrees. It is life-long and is present from early childhood. Some of the red flags for autism are language delay, lack of eye contact if you call the child’s name or try to engage him/her, lack of social interaction, sensitivity to loud sounds, repetitive behaviour, and difficulty in handling routine changes, among a host of other symptoms. Although it is not clear how many people have autism in the kingdom, the fact is that there is a substantial number, substantial enough for relevant authorities to want to avail facilities targeted at improving their quality of life. 

In Swaziland there are many severe deficiencies in the world of individuals with autism and their families. These range from non-availability of medication sometimes, lack of a solid support system for parents, the stigma associated with the condition, and of primary concern, non-availability of ideal educational structures for children with autism.

I am very thankful to have conducted some interviews with some autism moms. Many are not willing to talk about their experiences with the condition. I do hope that as we continue discussing this condition, more people will come forward to share their stories, with hopes that when the powers that be read real stories from real people, the challenges surrounding autism in the country can be addressed. The general consensus in the autism community in Swaziland is that not enough is being done to foster inclusive education, especially in government schools. When people discuss educational inclusion, what immediately springs to mind are wheelchair ramps, braille, and equipment for the deaf. Those with intellectual difficulties are usually sidelined.

While most parents would have secured schools for their children several months before the beginning of the new academic year, those with autistic children will be tearing their hair out with absolutely no clue where to send their children. The choices are very limited, and are usually not ideal. Now, that is extremely sad because every child deserves an equal shot at life regardless of how they were created. Children with autism are not write-offs. They are quite capable of learning, but do so in a different way and at a different pace than typical children. We cannot preach acceptance or equal rights for people with disabilities when there are certain groups that aren’t being sufficiently catered for

A section of Mbabane

Parents of typical children have a wide array of school choices. When your child has autism and you are in Swaziland, you mostly have to settle for any school that will accept your child, even when, with a breaking heart, you can tell that your child is not really getting the help he needs.  A parent would sleep better knowing their child is getting the best care possible at school, and is not just getting tolerated or even being discriminated against.

This happened to Sakhile* of Mbabane when she enrolled her autistic daughter, Nomsa*, at a certain school. When she met the person who would be her child’s teacher, she was very upbeat and assured her that she knew how to deal with autistic children as she had also studied Psychology. Not long afterwards, Sakhile got a distressing text from the teacher, who said she couldn’t handle Nomsa anymore. She was hyperactive, would just walk out of class at will to just look around, and could not concentrate on one thing at a time. Sakhile took her to a local pediatrician so that she could get medication to help her settle down, but the doctor declined to do so. (The issue of medicating children with autism is a thorny one, and will be tackled in upcoming instalments).   The teacher said Nomsa had to come so school with an assistant from home as she could not cope on her own.  In her own words, “It would help a great deal and release some pressure off me.” Sakhile said there is someone she has a connection with, Nomsa behaves a little better.  She then decided to send her helper with the child, but the helper quickly quit her job because she did not want to accompany the child to school. She probably felt this was not what she signed up for.

Sakhile’s sentiment is that the teacher did not create a relationship with the child and wrote her off without even trying. Consequently she had to pull her child out of school for a few days to arrange for another assistant.  “The teacher’s complaints always implied that my child is a burden. When we first met her, she allowed the child to be and when we tried to control her, she would say, “No, leave her alone. Let her be herself!”  She said she did Psychology, but if you did psychology then you should know how hard your words would hit a person and you would choose your words carefully when you complain,” she said.

There are a number of private schools that are doing their best to equip themselves to include pupils with autism by providing the right amenities such as Occupational and Speech Therapy at the schools to avoid the hassle of children missing school, and their parents missing work on a regular basis to seek the treatments at hospitals. But what happens to those that cannot afford private schools? They do not get an equal chance at education and sadly just fall through the cracks. There are also quite a few preschools taking children with autism, but when they’re old enough to go to primary school, there are just not enough schools to accommodate them.

In the next instalment, we will discuss how the Enjabulweni Learning Centre came to be, and how it happens to be the dream school for many parents with autistic children.

Published in Swazi Observer on Sunday

*Names changed on request

How the Enjabulweni Learning Centre came to be

Over a decade ago, a family found itself in a predicament following the discovery that their son had a learning disability. Unfortunately, as he grew up, no-one had brought their attention to it and by the time they realised it because the pre-school that he went to just pushed him along.

When it was time for him to go to school, the Paivas realised that their son, who we will call Ben, was not really ready for that. They decided to investigate, and that was the beginning of their grueling journey to accord their child a chance to get an education like any other child.  “We spent a lot of our time to research to see how best we could help our son, which resulted in us being told by one of the people we went to see that with children like our son, the most important thing that you can give them is stability in their life and their home environment,” said Sonia Paiva, the child’s mother.  But they wanted their child to learn, and an advisor recommended that he be put in a school that would accommodate him, with children of his level of functioning, and at the same time let him go to meet the children in the mainstream.

“When we came back to Swaziland there was absolutely [no school] like that in both the government and private institutions.” The Paivas then approached Enjabulweni, and realised that the need for a special needs class was there but there were no facilities for that. They then came to an agreement with the school to build the Paiva Remedial Centre while the school provided the professionals. And that’s how what is known as the Learning Centre started.  That staunch determination by desperate parents has resulted into a huge blessing for children who would also have had nowhere to go.

Enjabulweni Head of School, Kathy Thompson said there has always been a huge demand for special needs education and a remedial class. The Learning Centre accommodates children with autism, Down syndrome, ADHD, dyslexia, the physically disabled, and those that just need a boost to settle in the mainstream. Owing to the fact that there aren’t many options in the country, there is a long waiting list for people hoping to secure a place for their children with learning disabilities. “We no longer put people on the waiting list, we are forced to turn them away,” said Thompson.

More than a decade since the Paivas’ struggle, there sadly hasn’t been much improvement. One parent facing a similar struggle is Setsabile* from Mvutjini. She is unemployed and her husband does not make enough to send their autistic 7-year-old son to a private school and cater for their other needs at home.

 “When my son was four years old, I took him to pre-school with hopes that when he mingled with mainstream kids, his speech and behaviour would improve but I was very disappointed when the teachers told me that they couldn’t handle him. He only lasted one term and one day I found him locked alone in a separate class and they said he’s causing chaos and disturbing the normal kids,” said Setsabile. After that she could not find placement anywhere else, and was forced to stay with him at home for two years until she found a place at a special school.

Setsabile is still keen to send her child to a mainstream school with a special needs class so that he can learn proper social skills from the typical children. Presently  she has to hire a taxi to pick him from a bus stop a kilometer away from home to the special school and back, to a school about 8 km away. She pays E1 700 per term in taxi fare. Although she is thankful that her child is in school, she is not entirely happy with the standards at the school. “The ministry of education must hire therapists so that our kids get speech and occupational therapy at school,” she said. Getting therapy at hospitals is challenging because of the expense of taxi fare to go there and managing the child’s behaviour in public transport.

The presence of resident therapists is one of Enjabulweni’s biggest strengths. Thompson said Enjabulweni was focused on inclusivity. “When a child improves, even for one lesson, we try to include them in the mainstream. Learning difficulties such as dyslexia, ADD, ADHD are barely residential and are good candidates for inclusivity,” she added.  This process, however, does not come cheap and Thompson highlighted that the children at the learning centre don’t have enough teaching assistants. She said the children needed to have much more therapy, but the Speech and Occupational Therapists at the school had a huge workload as they also work with children in the mainstream who might need their assistance. They also have to be paid medical rates, which is one of the challenging aspects of retaining their services in the school.

With regards to how other children in the school relate to those with intellectual disabilities, Thompson said, “We try to create a sense of family and children with special needs are included wherever possible in order to look for, and find their strengths. All these people can perform. Society has to give them the opportunity.” She said her school was pushing towards vocational opportunities in order to find a skill appropriate for their capability. The Learning Centre currently has an agricultural project they are running.

Inclusive education has been seen to help improve the condition of children with learning disabilities. Affected children will learn how to relate with others, while typical kids will grow up with “different” people among them, minimizing the possibility of them growing up to discriminate against those with disabilities. 

Published in Swazi Observer on Sunday

*Names changed on request