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Families, Communities Play Key Role in Nurturing Kids With Down Syndrome


Some of the children and parents who took part in activities to mark World Down Syndrome Day in Bulawayo. (Courtesy Image: Sibusisiwe Mazula)

Some of the children and parents who took part in activities to mark World Down Syndrome Day in Bulawayo. (Courtesy Image: Sibusisiwe Mazula)

Zimbabwe joined the international community on Monday in commemorating World Down Syndrome Day, which is observed in more than 60 countries.

Many organizations and communities, including the United Nations and the Down Syndrome International, promote World Down Syndrome Day to raise people’s awareness and understanding of Down Syndrome.

Tuesday marked the 11th anniversary of World Down Syndrome Day. The theme for this year is “My Friends My Community - Benefits of inclusive environments for today's children and tomorrow's adults”.

According to National Down Syndrome Society, this condition is caused by gene mutation. “In every cell in the human body there is a nucleus, where genetic material is stored in genes. Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes. Typically, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent. Down Syndrome occurs when an individual has a full or partial extra copy of chromosome 21.”

The common physical traits associated with Down Syndrome are unique to each individual. These include low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm.

Despite serious socio-economic and other challenges in the country, some Zimbabweans joined the rest of the world in commemorating the day. This included members of the Zimbabwe Down Syndrome Association, who commemorated it in Makokoba , Bulawayo, to raise awareness within the community on problems of people living with the disability and how the community can play an active role in supporting children with this condition.

MOTHER OF DOWN SYNDROME SPEAKS OUT

Sibonisiwe Bonnie Mazula, volunteer coordinator of the Zimbabwe Down Syndrome Association, encouraged Zimbabweans to face the realities of discrimination and stigmatization associated with Down Syndrome.

Mazulu, who is also a mother of a 31 year-old daughter Andile, who has Down Syndrome, said there are many challenges faced by people with this health condition.

“I did not even know what Down Syndrome was … One can face rejection from the family and the community when they know that your child has Down Syndrome and when you have a child with Down Syndrome the community believes you would have done something wrong. They accuse you (of doing many uncouth things) and also say this could be God’s punishment. Down Syndrome can happen to anyone. There is no one to blame. It affects anybody, anyone regardless of race, color, male or female.”

Early learning and intervention is also key in the societal integration of children living with Down Syndrome.

Mazula said, “The inability to express with words can lead to frustration. That child needs early education for the purpose of assimilation, because children with Down Syndrome are challenged with reading and writing, and in fact some cannot read or write and find it difficult to understand even with inclusive education but can do other things very well … (So, the) the community should take time to understand them.”

NEED FOR QUALITY EDUCATION

She added that Zimbabwe has a long way to go in terms of quality education, especially for those people living with disabilities such as Down Syndrome. “We are very worried as parents about the effectiveness of the education system. Are the teachers trained and experienced to work with a child with Down Syndrome? The challenges presented to us in Zimbabwe right now, how many children can afford iPads or a phone to download apps. The educational resources to assist these children are not available.”

Experts say the role of the family and the environment are crucial in nurturing a child with Down Syndrome. They say this is critical in mental development among children with this health condition.

Mazula echoed the same sentiments. “The development process of a child with this condition depends on the child’s individual make up and also depends on the environment, and on how family members treat the child … It depends on the education and the child needs love. If the child is ignored in the homes, all hope is lost. Let us give them opportunity and the support they need.”

She said indications are that most Zimbabweans have a negative attitude towards people with Down Syndrome. “The attitudes have been very discriminating and stigmatizing. It is because they don’t understand anything about Down Syndrome.”

LIFE OF DOWN SYNDROME KID

In her capacity as a mother and parent of 31 year-old Andile living with this health condition, she once spoke of fears regarding her future. “As she was growing up I would wonder a lot about her future. Will she have friends? Will she ever get married? Will she ever work?"

All these questions have almost been answered.

The Zimbabwe Down Syndrome Association does not have direct donors and Mazula believes that there is need to fund such organizations, which play a key role in nurturing children with Down Syndrome.

She said, “Getting funding is difficult, the organization does not even have one sole sponsor that can say we will fund you wholly. We need resources to be able to go to rural areas to assist these children. Some are subjected to sexual abuse, mainly the perpetrators take advantage of them because they are challenged in fully expressing themselves.

“We want to be able to assist in counseling parents, and educating the community through active youth forums. Many cannot come where we are but with resources we can go to them. I know what the parents need when it comes to our children, I have their support. The government is not doing enough to assist people with Down Syndrome. We acknowledge their inclusive educational policies but more can be done.”

COMMEMORATIONS IN ZIMBABWE

An event to mark World Down Syndrome Day in the country’s second largest city, Bulawayo, was attended by various dignitaries, including guest of honor Soneni Gwizi of the state-controlled Zimbabwe Broadcasting Corporation. Gwizi, a well-known poet, is also a gender and disability activist.

Her works were recognized in 2013 by Women4Africa, which awarded her the prestigious Women for Africa Reward.

She was once quoted by the media as saying, “I have not allowed my disability or society to define me by my condition … I celebrate my life as an African woman with a disability by inspiring and impacting people across board using the media & all platforms that avail before me.”

Lawmaker Thabitha Khumalo of the Movement for Democratic Change led by Morgan Tsvangirai also graced the event.

She said, “Society is stigmatizing these kids (with Down Syndrome), and mothers who give birth to these kids are accused of witchcraft. As political leaders are we part of them (Down Syndrome kids) and are we speaking their language, are we feeling their pain.

“The physically challenged in the community are flowers in the community. My role is to represent these people at the highest offices of this country, and if I don’t do that I will be doing a disservice (to the people). Government should support Down Syndrome. We need satellite centers in the rural areas, thereby create institutions that capacitate them. We need to empower them by giving them tools so they can be mothers and fathers of tomorrow.”

Khumalo promised to raise this issue in parliament so that government can tackle such disabilities.

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