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.