My girls want to learn
Busi is 17 and Thandi is 12. They are both quite extraordinary not-so-little-anymore girls and I am their mom.
A science experiment... dare I consider the possible consequences?
Busi arrived in my life when she was 2 and desperately sick in Red Cross Children’s Hospital. Just a tiny speck of a person, no-one expected her to live to 3, when I got to bring her home. I remember the dear old doctor’s words as he discharged this 4 kilogram miracle into my hands, “Remember, it’s not quantity of life. It’s quality.” Against all odds, she’s turning 18 in August 2017.
Busi, at nearly three years old and weighing just over 2 kilograms, decides she's pretty determined to live.
Busi has autoimmune enteropathy, which not only affects her gut and kidneys, but has impacted on her physical and brain development too. She’s still teeny: fully grown at just 1.2m tall, but with a keen mind and even keener enthusiasm for pursuing this thing called life, whatever it might throw at her. She doesn't let anything stop her. She's not just a dreamer. She's a doer. She's a survivor. She's the ultimate Comeback Kid.
Diagnosed at 13 with autoimmune enteropathy... cooking with Jenny Morris on TV at 16!
Education has not been easy. Her size, chronic illness, and cognitive difficulties made her Grade 7 in 2015 a huge achievement. 2016 was a rough year. She had every neurological test there is, and we were offered little hope of finding a school for her to continue her education. Her learning issues are not run-of-the-mill, and neither are her medical issues. But without at least a Grade 9, there isn’t a way for her to get into chef school or achieve her dream of becoming a chef.
At the beginning of 2017, she came out with a grand resolution: “I want to go back to school and get a Grade 9 so I can go to chef school.” My heart both soared and sank. It soared with pride at this incredible little human who stops at nothing. It sank because I thought, there is nowhere, I’ve tried everything. But still, we looked, we met, we talked, we researched, and eventually found our way to the Daniel Academy as an option.
The Daniel Academy
Busi had her first ‘trial day’ at the Daniel Academy on 18 January 2017. I bit my nails and tried to breathe deeply from dropping her off at 8am until I fetched her at 3pm. I knew how much this meant to her, I knew how and why the school looked so promising in terms of both her talents and her limitations, and I was terrified it would be another “no”. It wasn’t. It was a YES. A wonderful, welcoming, astonishing YES. That’s big. For this country, that’s big.
Again, there was the soaring and the sinking. Soaring, definitely: a place for my child to belong, to discover, to learn, to grow! Sinking… how can I pay for this but how can I deny her this?
I reminded myself how bringing Busi home was a leap of faith, a great big jump into a complete unknown. This is too. It’s that jump. That jump you’ll make a hundred times over for the child you love beyond any speaking of it.
Daniel Academy fees are R4200 (about $310) a month including everything except travelling. This about half or less what top private schools charge, and not much more than the total cost (all extras included) of a good public school.
Fun at the Daniel Academy!
Thandi entered my life when she was 3 months old. She had been abandoned at birth with no hope of tracing her biological parents. Like Busi, she had failure to thrive. She also had great big brown eyes that captured my mommy heart in a blink. On 5 January 2005, I brought my precious princess home. I can’t say she was an easy baby, but I loved nothing more than carrying her around on my hip, glowing with happiness. She’s a little too big for my hip now, but she still makes me glow with happiness!
Thandi comes home and about a month later, it seems failure to thrive is not a problem anymore!
The event that changed everything
At 22 months, my chunky little toddler had what the neurologist called a “catastrophic neurological event”. Basically, a big seizure, the onset of epilepsy, a complete change in personality and terrifying regression, and what was diagnosed as autism a year later.
Thandi walking on her first birthday (left) and playing in the park just before the neurological event at 22 months (right).
After 8 years in three top public special needs schools, including 4 years in hostel, she had what I can only describe as a breakdown at the beginning of 2016. Her epilepsy had come back after 2 years seizure-free. She was inconsolable and aggressive and would hit her head and say, "I'm bad! I'm bad! I'm bad!" and sob, for no apparent reason. She wouldn't let us touch her or come near her. She tried to jump out of a moving car twice in sheer terror. I could no more turn my back on her distress than fly.
We all moved home to Betty's Bay, a tiny village 90km outside Cape Town, to live with my parents. We found an autism specialist, Jacoba de Kock, who designed a home programme for Thandi and trained Tracy Wurr to tutor her.
Thandi's team: Jacoba (left) and Tracy (right) and happiness is a run on the beach!
Tracy the Tutor
Tracy works one-on-one with Thandi every day. In just two hours a day over six months, Tracy got Thandi reading, counting, starting to write and a whole lot more we never thought possible. This one-on-one interaction in a positive relationship has turned out to be just what she needs not just to learn, but to bloom.
OTs and specialist teachers will recognise the sensory progress!
Thandi is HAPPY, possibly for the first time since that fateful day 10 years ago. She laughs and talks and dances and plays and reads (shifting between Princess magazines and a rather odd fascination with Principles of Medicine in Africa). She surprises us every day with some new achievement or discovery.
She has shifted to internal motivation - doing things because she wants to and feels good about them - rather than us relying on elaborate reinforcement systems to get any kind of co-operation at all. This is all new, and when she spontaneously gives me a hug and lifts her little face for a kiss, I could cry at the miracle of it.
Thandi needs more. Her mind and fascination with the world around her grows all the time and two hours a day is just not enough to satisfy her endless curiosity. Increasing her hours has been on my list of priorities for a long time, but it’s been out of reach to double the cost to R4000 - R5000 (about $295 - $370) a month.
Once I had committed myself to single motherhood, I fell into a career in educational publishing to pay for it all. It was never easy juggling my babies with my job, but it became impossible when I developed Pituitary Addison's disease/SAI/Hypopituitarism in 2015 and could no longer work. Disability insurance has so far refused to pay out and government assistance is about $110 a month, means-tested and if eligible. Currently, the South African Social Security Agency (SASSA), which administers social grants, is in crisis. We’re all supported by my parents (both pensioners). My job now is to stay alive, stay their mom and fight for their dreams, so this is what it’s all about.
Daughters are forever.
Good question! I could refer to SDG4 and the failure of White Paper 6 and country statistics and all sorts of wonderful academic things about kids with exceptional learning needs and how they are failed time and again all over the world. I will not fail my daughters. I will not stop believing there is a place for them in the world where their light can shine. I choose to marvel at how, in their own ways, they never cease to seek and find what I am so often told is beyond them.
"In South African 70% of children with disabilities and are of school-going age are presently still out of school. Those who do attend school are mostly still in separate, ‘special’ schools for learners with disabilities." D Donohue, J Bornman 2014
Who will this help?
I’ve set a fundraising target of $750 a month to cover Busi and Thandi’s education.
That doesn’t just mean these two little souls are helped. It means there is hope for all children like them. It means we can begin to create an alternative to the broken system that leaves so many behind and will take decades to rebuild.
What we raise beyond our target will go towards supporting other children in our Overberg community (see demographics) who are also home-schooled or tutored because their learning needs are just not met in the schools available. The burden is high and so are the stakes.
I’ll keep this page updated so you know exactly who is being helped and how, and you can share in the stories of hope you are part of.
Can you help me raise $750 a month and let them fly like the eagles they are?
Thandi wanted me to put on a picture of The Pups, our beloved miniature dachshunds Roxy (left) and Rachel (right), so here they are: