
I'm Banele and I'm a social media influencer Full name? Fatima Desai Where in the Western Cape do you reside? Pinelands, in Central Cape Town. How were you exposed or made aware of FAS? Fatima was exposed to Foetal Alcohol Syndrome (FAS) after fostering her two sons. Initially, people asked her how it’s like to raise children with FAS, as she was not aware of it at that stage. What are names, gender, age and race of the children you have adopted with FAS? Fatima adopted two brothers from Khayelitsha, Banele (8 ½) and Odwa (6). How long have you had the children? How old were they when you adopted them? Banele was with his biological mother until he was five months old. He was born three months premature because of the HIV and the alcohol abuse and his mother abandoned him when he was five months old. A mitochondrial DNA test was done on the boy, which is a process of extracting mitochondrial samples of the mother from the child to see how much alcohol is in the child’s blood system. Fatima first met Banele on the 15 of December 2005; she visited him for the next two years. He was then placed in the Sarah Fox Children’s Home and later transferred to Fikelela Children’s Home in Khayelitsha. He was about four and a half years when Fatima adopted him in January 2008. Why did you adopt them? “I have always wanted to adopt Banele, it was always my intention to do that” Fatima said. After she met him in 2005, she decided she would adopt him late 2006. She saw that little Banele was lonely and had no one, and he wasn’t being visited by anyone. The challenge at this time was that the Child Act had just been amended; the law was strict with foster children being adopted. After the amendment of the Child Act, the rights of the biological father came into play and it was possible for foster children to be adopted. Where are their parents? Fatima was told that Banele’s biological father was deceased. His mother is permanently alcoholic; therefore it is difficult to get a decision from her. She cannot take oath in court as she is permanently drunk and the court procedure is held back because of this. What were the challenges you faced with the adoption? Both with the parents and government.The difference between fostering and adopting is rather significant. With fostering, the adoptive mother can still claim a child welfare grant. And sure enough Banele’s mother continued to collect the grant for him. For parents who are fostering, it is advisable to collect the grant money or give it away; this is because if the foster parents forfeit the money, there is a loophole for the biological parents to collect the money fraudulently. This primarily because the biological parents need the money to support their addiction i.e. alcohol. The foster children are exposed to financial abuse. The boys’ biological mother disputed the adoption, which made it a section 19 adoption. Prior to the Child Amendment Act, the family of the foster child could dispute the adoption, wouldn’t go through as they had the right to the child. The amendment of the Act had then put the interest of the child first. The children are now evaluated in terms of the bond with the biological parents(s) and the bond with the adoptive parent(s), this is to evaluate the chances the child has to re-integrate with the biological family, and if there is a slim chance, the law is inclined to place the child with the adoptive family. After attempting to adopt her two sons, she only received the forms at the Goodwood Court in the beginning of March 2013 this has been approved by the Magistrate, which makes it a process of over seven years. The forms have to now be taken to the registrar of adoptions to be put up into the registry in Pretoria. Because the adoption is not through yet, she cannot apply for passports for them, as they are not legally hers yet. And in terms of the tax benefits, Fatima can only claim for medical benefits only. With children who are in between the fostering and adoption phase, they do not receive the full tax benefits that other children receive. Government challenges: Social workers There is always a passing of the buck when it comes to child welfare; people tend to wash their hands when it comes to this. During her adoption process, Fatima found that there are not enough social workers handling that, there were only three social workers doing the job of nine people at the Gugulethu child welfare center. Social development “They told me he was not part of their jurisdiction, and I was not happy with that” Fatima expressed. Social development has washed their hands from this dilemma and not enough is being done to solve this problem. The support that was supposed to happen did not happen as it should, as Banele is a social development child, being transferred from the state to her care. There were also cross cultural challenges as Fatima is of a Muslim background and the children are Xhosa. The medical fund was also rather problematic. There are multiple medical disabilities that FAS children can be born with. Which do yours have? Banele is HIV positive and terminally ill. He has six out of nine behavioural disorders, which are Attention Deficit Disorder (ADHD), dramatic mood swings (he could be the happiest person one minute and the most miserable the next), heightened aggression- FAS children cannot be disciplined the same as other children; “For instance if I raise my voice to them, will think I’m attacking them and they will attack back” Fatima shares. Flight or fantasy (which is a severe in FAS children as it lasts for longer periods at a time and they cannot snap out of it easily), babbling (as seen in people who are drunk) and a low IQ, therefore, Banele is classified as intellectually disabled. FAS children do not have a solid skeletal structure, and they are floppy. They have glassy eyes, sharp noses (which is unusual in African children).Fas children battle with grasping or rather gripping objects, much like a person who is drunk. They also show shakiness and cannot stand firm on their legs. They can be rather noisy because their vocal cords are not fully development for them to realise that they are loud.Fatima’s children also suffer from attachment disorder. Banele needs people around him all the time; he needs constant interaction with other people.Fatima explained that Banele struggles with mathematics, as the side of his brain that deals with numerical reasoning has been badly damaged from FAS. “He struggles a lot with maths, but no so much with language, language he can do, but math is really a problem” she said. What are the day to day challenges of raising children with FAS? There are not enough special schools for children like Banele, because they require speech therapy, physiotherapy, occupational therapy and psychological assessments on a regular basis. Fatima has the challenge of Banele still bed wetting; he was still in a diaper when he went to live with at eight years old. Due to the damage caused by FAS, Banele does not have the ability to realise when he needs to go to the toilet, Fatima has to physically carry him to the bathroom every night. What are the social challenges that they face every day? People are not always accepting of people who are different from them. Other parents with ostracise children with FAS saying they do not want their children to plat with them because they are rowdy, however, this hasn’t been a problem for Fatima because she is socially accepted which has made it easy for her boys to be socially integrated, which is helpful for their self-esteem. The FAS statistics are growing rapidly, with the Western Cape registering the most cases of FAS in the country. Do you think the government is doing enough in terms of involvement and preventative measures? If not, what do you think still needs to be done to help eradicate this? The government is afraid to classify it as a national emergency because of the cost factor it may bring to the system. This is because the medical practitioners that would be needed do not come cheap. What your community’s reaction to the adoption of your children? There two categories of responses. The one was the people who thought she was a Saint and doing an incredible thing, and the other was of people who thought she was completely insane. Banele has become more accepted now because of that journey. What is the community doing, or how is the community involved in the fight against FAS? There has been an increased level of awareness about the problem of FAS. Except adopting children with FAS, how else are you involved in the fight against this problem? Trying to advocate to the World Health Organisation (WHO) to classify FAS as a disabling condition. If it could be classified as a disabling condition, the children with FAS will be entitled to the same level of attention, support and therapy as other disabled children. There is not enough being done in terms of awareness, education and democracy, there is still a very long way to go.Fatima would also like to lobby the constitutional court to separate between the reproductive rights and child rights.
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