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

Ignorance on Down syndrome breeds discrimination

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

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

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

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

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

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

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

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

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

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

Names changed on request

Down syndrome awareness is represented by the blue and yellow. 

A mother’s 5-year Down syndrome journey

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

People with Down Syndrome
Picture sourced from the internet

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

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

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

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

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

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

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

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

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

A mom shares her autism story

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

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

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

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

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

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

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

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

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

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

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

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

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

Most older teachers not equipped to teach children with special needs

In 2011 the Swaziland Ministry of Education and Training formulated a policy on Inclusive Education. One of the fundamental objectives was to allow child with special educational needs (SEN) to enroll in the mainstream at their local schools and avoid a situation whereby the child is uprooted from his or her environment and made to start life somewhere else without the support of the parent and outside their normal environment. However, some teachers have come forward lamenting that they are not equipped to teach children with special educational needs, even though they want to, owing to the fact that they were not trained for it.

Local teacher training institutions have over the years started to put some emphasis on special needs, which teachers who have been in the field for longer say was not the case before. A teacher at a school in Mbabane, Muzi Shongwe* said there was lack of capacity building to empower teachers to better assist the learners. He trained at Southern Africa Nazarene University (SANU) and started teaching in 1994. Shongwe said in most government schools, there was lack of programmes and resources suitable for the challenged child, and the infrastructure was not conducive to the needs of the children. “The policy on inclusive education is a very noble initiative. But we lack political will. The policy only exists on paper. My heart bleeds for those children. Just like any other, they have a future. They have dreams. We cannot exclude them based on the special circumstances,” he said.

Ministry of Education and Training Senior Inspector for Special Education Needs, Cebsile Nxumalo disputed that the policy existed only on paper, asserting that schools that had embraced the principles of Inclusive Education were improving their policies, teaching and learning and resourcing approaches to cater for diversity in their classrooms.

Shongwe said the situation would improve if government capacitated teachers by either paying for or subsidising their studies in special needs training.  He also recommended that the National Curriculm Centre should design a relevant curriculum specific to the needs of the children and that resources must be provided to enhance the programmes. “My school has limited collaboration with Ekwetsembeni Special School. They assist with activities that can be assigned to the learners and how to manage them. We’ve also engaged inspectors from the Ministry on capacity building. Mid to long term, we encourage our staff members to enroll at the university. But before that happens, the children’s future looks bleak, sadly,” said Shongwe.

Responding to Shongwe’s grievance that there were no adequate resources to help children with special needs in schools, Nxumalo said resources were multifaceted. They could be financial, material, or otherwise, and the ministry encouraged schools to identify the specific resources they needed and then include those resources in their school development plan and budget.  “Where they need external support, they then make the SEN unit aware of the specific support they require.  The Ministry has over the years supported schools in this regard,” she said. Nxumalo also said there was no separate curriculum, adding that the ideal situation would rather be to modify and adapt the existing curriculum to suit the needs of every learner in the classroom. 

Nxumalo said all teachers who go through a Primary Teachers Diploma or Secondary Teacher's Diploma in all the teacher training colleges do Special Needs training from 1st to 3rd year.  “This has been the case since 2009.  Therefore, teachers now graduate with a good base on SEN issues.  In each primary school we therefore expect that there are one or two teachers who have done SEN. Furthermore, the SEN unit does run capacity building workshops for school. This means every year we select a few schools (primary and high schools) to benefit from the workshops. The number of schools to benefit is determined by the funds we have that year for running workshops,” said Nxumalo.

Although Nxumalo said since 2009 all teachers had been receiving SEN training, another teacher who graduated from Swaziland College of Technology in 2012 emphatically denied that he ever got such training. He, however, went on to teach at a special school. Fortunately for Mukelwe Dlamini*, he has since enrolled with SANU for a degree in Inclusive Education and Special Needs. “I was learning by doing and experimenting with the children because I had no clue how to teach them. Sometimes whatever strategy I used would win, sometimes not,” he said when quizzed on how he managed to teach the children with no training. Dlamini said the only special skill he possessed was that he could use sign fluently, which placed him in good stead with the deaf students at the school. He undertook to learn sign language for his own personal development even before he went for tertiary education. Since enrolling for the studies with SANU, Dlamini said he feels a lot more confident and empowered to teach learners with special needs. “Now I understand that learners are diverse and that the one-size-fits-all approach which I employed before is not necessarily the way to go. I am learning different strategies one may employ to teach my students,” he said. He added that he was grateful to SRA for sponsoring his studies, and that he was fortunate because there were many teachers who knew nothing on SEN, yet some of them were teaching such children.

Although there might be some advancement in equipping teachers for SEN, what is very clear is that there are many teachers that graduated before a proper roll out of the training that are still out in the cold. It is a genuine concern that should really be addressed with the seriousness it deserves, because the end result is a child with special needs who remains illiterate even as he attends school; all because his/her teacher doesn’t know what to do with him. In some circumstances, parents are requested to withdraw their child from school because the teachers have thrown in the towel on that child. Children might end up staying at home or being forced to commute to distant special schools. 

*Names changed on request

Finding Ability in Disability

“God show me where no one is going, that’s where I want to go, somewhere I will make a resounding change.” That was Maggie Sambo’s prayer when she felt a sudden urge to give back to the community. Sambo is a somatologist and owner of Nail Bar and Beauty Studio behind The George Hotel, in Manzini.

Deafness is usually a barrier to employment for affected individuals. People have misconceptions about the competence of deaf people in the workplace, and companies might not want the extra expense of hiring a sign language interpreter. In her ebook What Every Deaf Person Needs to Know, Sarah Terras, who is also deaf, mentions that one of the reasons why employers won’t hire deaf people is the communication difficulty. “The employers who work in a fast-paced environment may not have time to write notes back and forth between them and deaf employees,” she said. Sambo looked beyond all this and took 10 deaf students under her wing to train them in the beauty industry, even though she knew no sign language clue. Slowly she learned how to sign and is now so fluent that she interpreted when I spoke to one of her staff members, Sifiso Dlamini.

It was in 2010 when she got her first batch of students from Siteki School for the Deaf. Since they were not originally from Manzini and would have struggled with bus fare, she accommodated them and saw to all their needs in her home in Ngwane Park; all 10 of them! “When it’s a calling it doesn’t feel burdensome,” she said.

Sambo expressed her gratitude to Dups for all the assistance they rendered buying student kits and footing the cost of their graduation ceremony. She was also grateful to some customers that would drop by and observe that there were many deaf students in training and would just bring a bucket from KFC, shoes, toiletries, clothes or any other help they could offer. After the training, Sambo employed her former students and placed some of them at other salons. Over the years, some have moved to other places, while others have stayed on. One of them is Sifiso.

Sambo had glowing remarks about Sifiso, who she said took his work seriously. She said he was the first person to come and open the shop, and the last person to leave the shop. He does not need prompting to clean up the shop and doesn’t complain about carrying out extra duties. Sambo said Sifiso was as good as a somatologist now because he does everything in the business, and he was the best student, beating the girls that he trained with.

Sifiso said he loved doing nails, hair and massages and wouldn’t choose anything else in life. He’s very proud of the fact that most women prefer to have him, not his female colleagues, do their nails because they say the nails done by the girls break quickly while the ones he does are strong. He gets more tips than any other worker in the shop and when he is unavailable, ladies prefer to go back home and wait for him to come back because he gives exceptional service.

Not everyone knows how to carry themselves around Sifiso and other deaf people in the salon. Sambo said there were people who came and openly showed their contempt of being attended to by deaf people. “Some people get in here with a very negative attitude like, “This person can’t talk so what does her know?”  I make it clear that I will not stand for that. I would rather lose the customer than lose my deaf employee. I tell them these children are going to be here, they are not going anywhere. I trained them so why would I chase them away? You better get used to their presence here.

Sambo lamented that deaf people went to school but many of them just ended up going home to sit as not many people are willing to give them an opportunity to work. “The problem is the attitude society has. Most people think that when a person if deaf, that person has weak brain function but that cannot be further from the truth. They are very intelligent. Sifiso is very good at detecting anomalies like blood circulation or knots when he gives massages. If you get a foot massage from him you’ll sleep the whole day. Sometimes I think that because he doesn’t have speech, God made up for it by giving him such incredible intelligence and the ability to do things perfectly,” she said.

Sifiso now has a driving license and is the one that goes out to buy supplies for the salon and do the banking. Sambo sometimes has to force him to go home and rest when he’s under the weather because nothing stops him from wanting to come to work. He still turns up even on his day off, citing the need to make extra money for himself. After he started getting a salary, he moved out of Sambo’s house and now has his own place. She is in awe of his wisdom and what he has managed to accomplish all by himself. He says he doesn’t buy household goods on credit but by layby to avoid being in debt. “I’ve learned that there is a lot of ability in people classified as disabled,” said Sambo.

She said her next project with students from Siteki School for the Deaf is in limbo as they await sponsorship. A salon has already been set up but the children need help in the form of kits (the batch of cosmetics needed to see them through their training). “As much as I want to help, I also need additional support. I can offer my skills, but the beauty products needed for the kits are very expensive. If people or companies could just come forward and sponsor a certain number of students, we would be very happy,” she added.

Is your language healing or inflammatory?

The National Center on Disability and Journalism, headquartered at the Walter Cronkite School of Journalism and Mass Communication at Arizona State University has a brilliant website with terms and words used in the world of people with disabilities. Their website states that their goal is to provide support and guidance for journalists as they cover people with disabilities. This resource is one that would help journalist worldwide to have a reference point when they are stuck or unsure of how to address issues to do with disability. They do recommend, however, that it is a good thing for a journalists or communications person to ask the person with a disability how they would like to be described. Despite our geographical distance with that institution, there is a lot to learn from the recommendations they make. It would be a good thing if everyone, not just journalists, visited such sites to learn the appropriate way to relate with people with disabilities.

People say many inappropriate things in society when they refer to people with disabilities. Before one can even go to discriminatory attitude, words are usually the first to show prejudice. This is particularly obtainable in respect of people with mental illnesses. A degree of sensitivity will go a long way in improving the quality of life of such people. There are various disorders that constitute mental illness. Without getting into detail, some of them are anxiety and panic disorders, bipolar disorder, depression, eating disorders, schizophrenia, and substance abuse and addiction. In a discussion unrelated to this article, though quite relevant to it, Dr Violet Mwanjali, a Psychiatrist and Mental Health Specialist, said many people went through life with untreated mental illness because of fear of stigma. She highlighted that many forms of mental illness were treatable and affected individuals could actually be contributing members of society if they stuck to their treatment plans.  Language that is used in relation to mental illness, however, might serve to discourage people from embracing their disability and finding intervention. This in turn causes a lot of turmoil in the lives of affected individuals, their families, and society at large. I remember a shocking local headline that referred to mentally ill people as “Stark raving lunatics”. It is totally unacceptable to use abrasive language like that towards fellow human beings. Other bad words journalists and ordinary people use on people with mental illness are crazy, loony, mad, maniac, psycho, insane, retarded, and deranged. Others call psychiatric hospitals “loony bins”. In light of that, a person with a mental illness would not be motivated to openly declare his/her illness for fear of being persecuted, yet it is a medical condition just like any other. The NCDJ recommends the use of mental illness or disorder, if you don’t know the specific illness, as more acceptable than any other terms.

People should find time to research more on mental illnesses, particularly if they have affected loved ones around them. It is not enough to just see that someone is “acting weird” and not take action. I believe much heartache and many suicides could be averted if people educated themselves on what sets their loved ones with signs of mental illness off, and tried to get them prompt medical attention. It is possible for someone to feel themselves sink into a dark place, but it is not easy to accept a mental illness diagnosis because of the stigma associated with it. People with diabetes do not have to hide in the shadows because theirs is not a victimized condition.

Dwarfism is a common genetic disability characterised by shortness of stature and disproportionately short limbs. Any adult human below the height of 147 cm is considered to have dwarfism. Because of lack of empathy or sheer ignorance, there are many names thrown at people with dwarfism. I have heard many terrible names, targeted at poking fun at their height, given to them in many languages. Some just call them Shorty, Giant, or other names that still show they are finding humour in the person’s disability. I know some people with dwarfism that laugh along at jokes made on them. This could just be a survival strategy and does not mean they are delighted to have jokes made at their expense.  Some people feel it is more acceptable to call people with this condition “midgets”, but that is also regarded as offensive and derogatory. Besides, the terms do not even describe the same thing. The term midget was used to describe persons of small size but with regular proportions when compared to average people. That term has since been struck off the polite language list, regardless of whether one is referring to dwarfism or just small size in people. It is also not considered appropriate to call them vertically challenged. It has become more acceptable to refer to people with dwarfism as little people, or describe them as having short stature. Dwarf is usually used in medical terms.

Although this piece was primarily targeted at media people, it is nonetheless relevant to everyday language we use in society. The book of James 3 in the bible has verses that say, “So the tongue is a small organ and can speak big things. Think how great a forest ever so small a spark sets on fire. The tongue is also a fire, a world of wickedness…Every kind of animal, of bird, of reptile and sea creature is tamed and has been tamed by mankind, but no human being is able to tame the tongue, this restless evil so full of deadly poison. We praise the Lord and Father with it; with it we also curse men who have been made in the likeness of God. From the same mouth blessing and cursing proceed. This is not right, my brothers; it must not be this way”. Let it not be your tongue that is heard calling someone sidalwa, sichwala or kukhubateka. Speak love, speak healing, speak acceptance.