Written by Cabral Opiyo
Autism is a chronic, life-long condition that experts are just starting to really understand. No one can pin-point to one specific cause but there have been various theories put forward including: autoimmune disorders, lead poisoning or genetics are the most popular. In Kenya where there is still widespread ignorance on the condition, it is even worse and Kate has had to grapple with having her beloved daughter being diagnosed with autism shortly after she was born and for the past sixteen years, she has been her daughter’s primary caregiver.
When Halima was born to Kate and her husband, she was a bundle of perfection and they couldn’t have been happier. That happiness was not to last for long as there was something wrong with her perfect bundle. There had been no difficulties during the pregnancies and it had been a peaceful gestation period for Kate, so her and her husband did not expect what was to unfold.
The first sign of trouble was when her baby’s temperature shot up after an injection for Rotavirus at Gertrude’s Hospital and wouldn’t go down. They went for multiple tests and were almost always around hospitals. What was to be a period of being happy and knowing their new child became a nightmare as the tests they were told to conduct mounted and so did the bills which were totally unplanned for. Halima was admitted to Kenyatta hospital for a fortnight but there was no visible illness to be found and Kate quit her work because her boss simply did not understand her situation; she was always rushing off to take her child to hospital, coming in late or not coming at all. Her child had to come first though and quitting her job, though a hard decision was the only way forward and thus, Kate’s journey as a caregiver begun.
There is nothing worse than your child being sick and tests and multiple doctors not being able to find a specific illness. Their paediatrician recommended MRI’s and EEG’s (electroencephalogram) to get a conclusive diagnosis and prescribed epileptic drugs to stabilize the temperature. At six months after a visit to a neurologist recommended by the paediatrician, Halima was diagnosed with autism and epilepsy and the parents had to quickly learn to adapt to their daughter’s condition and react appropriately. On her husband’s side of the family there had been cases of Down syndrome and Kate thought that was the likeliest connection to her daughter’s condition.
The early days were the hardest, not that it has gotten any easier but Kate has managed to understand the situation and deal with curve balls as they come. The baby Halima used to cry a lot and nothing would make her stop further causing her parents distress, the financial requirements completely drained their finances, there was widespread lack of understanding from her family and friends and she completely refused to breastfeed forcing her mum to use a bottle to feed her. Kate tells a story of once feeding baby Halima using a bottle in a matatu and she got dirty looks and even some passengers questioning why she did not breastfeed such a young infant, her explanations falling on deaf ears and causing her a lot of pain.
Fast forward sixteen years down the line, Kate is now an expert in everything autism having lived and loved a child diagnosed with it. Getting house helps to stay has been difficult because it is not easy to take care of Halima, she does not behave in any conventional way and at times strangers find it hard to understand her. So it has fallen to her immediate family to take care of her and make sure that she is safe.
Halima is prone to accidents and there have been multiple instances of having to rush her to hospital because she hurt herself. She is hyper-active as children with autism are wont to be and at times when frustrated she bangs her head on the wall multiple times. She also tears her clothes, bites her hand to the point of removing skin and drawing blood and hits the windows with her fists. This recurring, destructive behaviour is in the ballpark of children on the spectrum and Kate has learned to anticipate some of these behaviours, their causes and onset and stop them at the root.
While the knowledge around autism is growing every single day, there is still a lot of ignorance concerning the condition and it has not spared Kate’s family either. She has had to distance herself from some of her relatives because of how they perceive Halima to be destructive and prone to accidents, they fear the consequences of her actions and the destruction of their property. There has been a lot of judgment from society attached to some of her family’s angst and Kate has withdrawn into her bubble to protect her daughter and her family from some hurtful situations.
Kate says, “Halima is now sixteen and is a lovely girl, I love her with all my heart and we are the best of friends because we spend almost all our time together. It has been difficult to take care of her but I wouldn’t trade the experience for anything.”
Kate has a younger son whom she adores but she also accepts has had to grow up faster than usual with a lot of responsibility on his young shoulders. There was no babying with him, he grew up knowing he wasn’t the baby of the house as his big sister was the baby and he stepped into the role of protector and helper seamlessly. He knows how to administer first aid when his sister is hurt and what to do when she has seizures. In turn, Halima respects and trusts her brother to no end and listens to everything he says. He’s only ten.
There are daily routines that have to be followed with Halima and since Kate is the only woman in the house she attends to most of them without hesitation; from helping her to shower, brush her teeth to changing. At times, the helpers hired to take care of her don’t strictly adhere to these routines leaving Halima frustrated and distraught which leads to self-harming destructive behaviour. As such, Kate is not comfortable leaving her baby to stranger’s care because mostly she comes back to an unhappy child whose needs have not been taken care of.
When Halima falls sick, it is only Kate who can sit by her bedside because of the familiarity she elicits and at one point she had to have a friend sit in for her in hospital as she went home for a shower and change of clothes. Her life the past sixteen years has been geared towards her daughter’s comfort and as such activities like going out with friends, partying or holidays have been shelved. Friends have been the strongest support system Kate has leaned on; her family have not always understood her situation and even those who do, have not always been present for the hospital and home visits or any type of moral support.
Halima is a happy-go-lucky young girl who loves to play with children and never raises a fuss when around kids, they calm her down and the love she shows them is reciprocated fully. She barely sleeps and loves music, specifically Reggae and Jazz and can be found humming contentedly when she’s happy or when the food is good. Kate laughs when explaining how Halima makes a face and throws away food she does not consider up to her standards, they no longer take her actions personally, and they understand her totally.
To distract her and calm her down, Kate takes Halima on long walks daily, they watch movies and go camping together. They have basically become one entity because they’re almost always together.
When her brother is around, Halima cooperates fully and does what she is told and when her father arrives, her attention shifts completely to him. She loves the attention that is lavished upon her by the other kids in her Sunday school class who are always offering to do things for her and take care of her needs. That is why Kate decided to take her to an integrated school with regular kids mixed with kids with special needs, kids do not discriminate and they strive to include her in their activities.
Kate sighs deeply when I ask her what she has learned about caregiving for an autistic child and the qualities needed. “We need encouragement and we need to talk to people going through the same challenges that we do because then you get advice on places to get cheaper medicines, therapy and the best schools to take our kids to. We need uplifting now and then and most importantly, flexibility at work to be able to best take care of our kids.
Kate did not sit back feeling sorry for herself, she started a women’s support group of women with kids with special needs. It has been eye-opening and uplifting just listening to women going through the same struggles as her speak about them, she has learned ways to cope with certain situations better and generally they all have a shoulder to lean on. As the leader, at times it gets particularly difficult because all the others vent their problems to her and she tries to help them all and also deal with her own issues. In a society that has not always made her daughter feel safe and wanted, Kate has found a community that accepts her for who she is problems and all.
It has been sixteen years of heartache, rejection and isolation. But it has also been sixteen years of new understanding, getting through obstacles, learning and the purest love ever known to Kate watching her little bundle grow and she wouldn’t have it any other way.
I am glad that there is more awareness now, though there still a learning curving for the community. Beautiful story. Beautiful that Halima is happy, mummy is happy and the community is benefit from the 16years. and the sweet young brother, Kudos to him.
I hope Katie is able to get assistance to assist even more people, The community needs the community.
Thank you for sharing your story Katie.