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.
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