Can you imagine…living in a community where you’re not accepted? Where you are judged constantly and where it is widely believed that you are cursed by God. And the reason? Because your son has autism. I know there are many of us out there who actually can imagine this. And that breaks my heart.
I recently came across the story of a young single mother, Kay, who is doing the very best that she can in life. She lives in Southern Botswana and is HIV positive. Kay has two teenage sons, the eldest of whom has severe autism. They live in a shack and she works full time to support her family.
Kay knows nothing about autism. She said “I once read a pamphlet in a magazine and the symptoms sounded like my son.” Many of us parents of children with autism know nothing in the beginning. We fumble around trying to find ways to care for our children who are so, so different from their peers. But we research like mad; becoming experts on all things autism, and we learn to understand and interpret the behaviours of our children, which can often be extreme and challenging. Can you imagine not having access to that knowledge?
Kay’s youngest son attends school during the day and is doing well. But her eldest son often roams the streets. His school cannot manage him; they do not understand him and the way he behaves. And inevitably on the days that he tries to attend, Kay will receive the dreaded phone call to go and collect him. Can you imagine that phone call from school that makes your stomach leap into your mouth? I know we’ve all been there.
And, yes, you did read that correctly; Kay’s autistic son often spends his days roaming the streets. Not a week goes by in the autism community where we don’t hear of a wandering incident. There’s nothing quite so determined as a child with a goal in mind, particularly a child with autism who knows no danger, cannot identify risks and who is completely and utterly naïve. So we barricade our homes. We fill in or avoid open water areas. We don’t let our children out of our sight. But still we hear of children going missing. Can you imagine not having a safe home to barricade? Can you imagine spending your days at work knowing that there’s a very real risk that your son is roaming the streets?
Kay’s eldest son was diagnosed with severe autism when he was 16. He is non-verbal, displays aggressive behaviour towards himself and others, he stims (displays self-stimulatory and repetitive behaviours) a great deal and has sensory processing dysfunction. He cannot communicate effectively, leading to frustration and desperation. Most people in his community refuse to be associated with him, with some even taking advantage of his child-like and vulnerable nature. Can you imagine what a scary and sensory overloading place his world must be?
So you see. We, as autism parents CAN imagine all of this because many of us have experienced this ourselves. Unfortunately it seems that the misunderstandings that surrounds autism are the same the world over, as is the lack of easily accessible and appropriate services. But it is changing here. For us. In the developed world. At long last. But that’s not going to happen for Kay any time soon. So what can we do as a community to help? We can build her a house; somewhere safe where she can live and work, and continue to bring up her two boys. I don’t know about you, but I think she’s done an incredible job so far, under the most difficult of circumstances. Can you imagine what she could do if she had just a little helping hand?
The company that I used to work for, Southerly (www.hellosoutherly.com), are helping to raise money to build Kay a house back in her home village, where she will have the much needed support of an accepting community. Please do something for me? Share Kay’s story far and wide so that we can help her to keep her boys safe and provide for their future. You can donate via this link: http://www.gofundme.com/kayshouse