28 Aug 2012
My presentation at the 11th World Down Syndrome Congress in Cape Town, South Africa, August 2012
Thanks to the fact that I am a pharmacist, I could readily understand when the pediatrician told me that my newborn baby had Down Syndrome. Regardless of my acceptance of the diagnosis and my effort to explain it to the larger family, some family members still brought pressure to bear on us to go and do findings at the witchdoctor. The visit to the witchdoctor was as usual, a wild goose chase and getting entangled in a hazy maze of superstition and fear mongering. The reluctance to accept that disability is natural is a fact of life in many African societies. You can appreciate what less informed parents in Africa go through.
Due to unusual low muscle tone, Akum’s neck could not support her head until she was over one year old. Her legs could only support her body to stand at age 3 and she could only walk months after. Due to inactivity at earlier stage, she had chronic constipation. Even as a pharmacist, I ran out of options of managing her constipation. My elder sister who is a school teacher used her own ingenuity to come up with a solution to the chronic constipation. She used to grater carrots and mix with cereal paste to feed her. In addition, she was regularly given carrot juice. Akum moved from Douala to Bamenda and lived with my elder sister while attending nursery school for two years.
She returned to Douala and enrolled into primary school at about age 7. The headmaster of the school was briefed of her condition and we agreed that she does the first year for two years in class 1 and subsequently she was to be promoted each year with her classmates until she completes school even as she was not coping academically. The clarity of her speech has always been a problem till date.
By the time she was completing primary school, she was already in her teens. We would have loved to enroll her in a girls’ boarding secondary school but admission criteria in these schools is strictly based on academic performance. Our school system is yet to adapt its set up to accommodate academically deficient ‘special needs’ children for the purpose of social integration.
It was quite a moving experience for me when Akum accompanied me to go and enroll her junior sister into a boarding secondary school. When the sister was measuring her school uniform, Akum asked the school warden to give her own uniform to measure too. I fought back tears when I tried to unsuccessfully give false excuses to her why the school will only accept her sister.
We later arranged for a private teacher to teach her at home. She is very interested in reading and writing but her natural limitations are a barrier to her enthusiasm. Many schooling options were considered for her but we had to weigh those options with security concerns. We live in a part of the world where institutions that protect vulnerable people are weak and criminality is rampant.
The trusting nature of people living with Down syndrome makes them easy prey to the evil minded. That is why all parents of children with Down Syndrome usually worry more about their security when weighing options for the children’s advancement.
Due to the fact that Akum is good at performing domestic chores, she was considered for employment when I was looking for a domestic staff. From the beginning of January 2012, Akum has been on the payroll of my pharmacy as a domestic staff attached to my house.
Akum is now eighteen and the main problem that we currently notice is the fact that she engages in ‘self talk’. Although it is a known problem encountered by some people with Down Syndrome, it got so serious of recent (by my assessment) that I had to take her to a doctor.
My advice to parents of children with Down Syndrome, is for them to accept them the way they are, show love, never be ashamed of them, never expect them to perform beyond their limitations.
If you ask many people, their ultimate expectation is that people with Down Syndrome should be trained and encouraged to lead independent lives. Yes, some can successfully lead independent lives but others will not be able to do so because individuals have varying degrees of disability. I will encourage parents esp. those in Africa to take advantage of our extended family networks to accommodate people living with Down Syndrome instead of orientating them to lead independent lives. In the present context of bad governance and insecurity in many African countries, it is my opinion that the protection and wellbeing of these people is better guaranteed within the extended family set up.
Life With Akum http://www.njeitimah-outlook.com/articles/article/2076046/34695.htm
Njei Moses Timah