Quest to beat the odds

 My daughter turns 7 later this month and has been creating more hype and campaigning for her birthday more aggressively than Donald Trump has been doing for the US elections. Her wish list keeps growing by the day, and at every turn she reminds me of the many times I’ve had to work odd or long hours, leaving her in tears but assuring her that I work hard so that I can buy her everything she wants. Well, now there’s a growing list of everything she wants – and she wants everything. A tutu dress with wings and rainbow colours, accompanied by an Alice band with a horn that looks exactly like her toy unicorn, Rainbow (which I was arm-twisted into buying), a trip to Sun City, a spa day for the two of us, a party where a number of friends will be invited, a “ginormous” Barbie cake in strawberry flavour…and…and…and. This girl will leave me impoverished!

I love birthdays, and my daughter could be a little OTT, but the apple didn’t fall far from the tree. Everyone close to me knows that my birthday cannot just pass like the wind because it is a big deal. I fall short of writing down a list of people who neglect to wish me a happy birthday on Facebook so that I can commit their names to memory and remember to also ignore their birthdays, or better still, not ever hit the like button on any of their posts. That’s a joke. I make a big deal of loved ones’ birthday too, and try to ensure they feel special on their own birthdays. For me, birthdays signify a new beginning. As a believer, it means God has kept me hanging around for one more year, and is giving me another chance to enjoy life, right my wrongs and find my purpose in life.

There's, however, one birthday that leaves me quaking in my boots, and it’s my son’s. Victor has autism and will be turning 15 in January. 

My sense of panic is escalating as the years go by. On the eve of his birthday I usually stay up late and say a prayer for him with a lump in my throat and a tear or two in my eyes, wondering what his purpose in life will ever be in a world where a high school pass and a tertiary qualification determine your success. 

Every new birthday is a reminder that I need to do something to secure his future and ensure he is a contributing member of society, but I don’t know where to start given the weaknesses in our education system. At 15, we are at a stage where there needs to be a plan in place for his transition into adulthood, more so because he is not in mainstream school where there are specific stages for everything. 

For neurotypical peers there are no worries because they still have to sit for matric, and decisions will be made thereafter. But with him and others in the same shoes, arrangements have to be made now. If he is to learn a trade, it should be done now, so that there’s enough time to seek out the skill and nurture it for a number of years, considering his cognitive abilities are underdeveloped. 

Government makes the right noises about the availability of schools for autism, but on the ground there really isn’t much happening. Many parents are at the end of their tethers not knowing what to do with their autistic children. Private school fees, where skills are reportedly taught, are up the roof and out of the reach of many, while public school standards are down at the bottom of the barrel.      

Victor will turn 15 soon and I'm yet to find what I consider a proper school for him. How ridiculously sad is that? In 2017 the Department of Basic Education reported that almost 10,000 children with special needs were still waiting to be placed in school. The figures can’t have changed much over the past three years; I’m not too hopeful on that front. 

My focus is now on ensuring that Victor learns a life skill, at least, in a world where a high school pass and a tertiary qualification determine your success.  I don’t know where to start, but I’m not static! One night when I had worked myself up into a near-panic attack, I reached out to my small network of autism parents about what we should do as a collective to secure our children’s future. I should have kept my worry to myself. Invariably the responses, across races, were of resignation, “Oh Charlotte, let’s just be glad for the small victories and not be too hard on ourselves, there’s really nothing to be done. The only thing we can actually do is pray that we outlive our children so that we can keep looking after them. Without us they’ll be on the streets picking food from rubbish dumps. Let’s just pray without ceasing, let’s be on our knees all the time.” Suddenly I wished we’d had a face-to-face meeting. Not for us to cuddle in our combined despair, but for me to give them noogies for giving up. I don’t want to be on my knees all the time, praying without ceasing. I want to be up on my feet hitting the ground towards a goal, or at least pacing up and down trying to come up with solutions. Even the good book says there is a time for everything, so there should be a time to pray, and a time to trust God to have your back as you act.

Our children risk falling through the cracks if there’s no intervention. The pain of seeing Victor’s age mates move from one stage to the next is one of its own kind. People in the autism community say we should never compare our children with ‘normal’ kids because we’ll only break our hearts. “Let’s focus on our kids’ strengths and small victories instead,” they say. But the comparison is inevitable. Without the right support, the strengths will not be of much use. I don’t want my son to just be known as that autistic boy or man who’s a whizz at reading, typing, spelling and trivia, but amounted to nothing because his mother gave up on him. For me, the comparison is a jab on the side that I need to do more for my son and other children. That jab sent me to nominate myself for election in the Autism South Africa’s National Executive Council in a bid to be close to the think tank, where challenges are presented but have to be accompanied by solutions, not pity parties. My two-year term begins this month, yay! Some in my circle are in awe of my perceived strength and energy to turn the tide. I can’t turn it, but I hope to be comfortable manoeuvring in it. I call it perceived strength because I’m not always strong. Sometimes I am that mom who tells herself she can trample snakes and scorpions, break down all barriers in her path to ensure her son emerges the victor, as he’s aptly named. Then there are those moments when I just want to buy a bucket of ice cream and box of tissues and ugly-cry in resignation, because the chances of my child and others like him attaining any degree of independence will remain a pie in the sky because of the odds that are stacked against us.

By joining Autism South Africa, I do strongly feel I’m on the right path. I hope to bring positive change to the organisation and raise awareness in the community and government structures. African governments need to know that not providing the right support for people with special needs is a liability on their part. Investing in vocational training, on the other hand, is not flushing money down the toilet, but a good investment in better futures for everyone concerned. People with autism and other cognitive disabilities will forever be tied to their mother’s apron strings and be a burden on families and state coffers for all their lives, having to be catered for through social grants. Sometimes they even impede their parents from working because of challenges they present. Isn’t it better to teach them to fish and feed them for life than give them a barely fulfilling fish once in a while? They might have challenges, but not all of them are insurmountable. They, like everyone else, need self-actualisation. One day Victor said to me, “Mom, will you visit me at my apartment and see my Audi?” In his innocence, he actually sees himself leaving the nest and having his own life away from me, but how do we get him there? Whether I’d actually allow him to leave my side is a story for another day, but I need to fight with every fibre in my body to ensure he has equal access to resources like any other human being. It’s all up to me. There’s no knight in shining armour coming our way.