Ignorance on Down syndrome breeds discrimination

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

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

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

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

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

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

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

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

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

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

Names changed on request

Down syndrome awareness is represented by the blue and yellow. 

Know the autism red flags

Autism Awareness Wall at Enjabulweni School, Swaziland

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

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

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

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

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

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

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

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

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

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

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

*Names changed on request

Additional information from firstsigns.org and Autism Speaks website