David began to hit his head repetitively as a little boy. This autistic behaviour continued for many years. I remember feeling somehow grateful that he never tried to hit, bite or attack his instructors. But this changed as he became a teen. As if it wasn’t bad enough to hear about how he had tried to hurt himself and about all the autistic behaviour he engaged in, we had to face that he had started turning on his team, lashing out at them and having to be restrained. The idea of these behaviours was soul destroying for us as parents.
I have to say that what we were exposed to as parents was inconceivable. It was a living hell. I’m not afraid of much after living through the long days that turned into years of David’s tantrums and autistic behaviour. David’s Behaviour-Intervention Plan (BIP) due to the autistic behaviour he presented, was regularly updated and tweaked as the supervisors allocated to him by CARD over the years ,scrambled to remain on top of his case and on top of his autistic behaviour.
His daily report, painstakingly put together, verified how many times he rocked, toe-walked, flapped his hands or struggled to make a sound or copy a word. All these behaviours labelled as autistic behaviour. Over the years I got used to what felt like endless lists upon lists of skills David struggled with or couldn’t achieve. Each time we tried to find a way to teach him, he’d master the skill but wouldn’t maintain what he’d learnt, regressing time and time again, losing everything and knocking us back to a point of zero progress. On top of that, the opportunities David had for learning were in any case few, as he was unstable most days due to a long list of autistic behaviour.
Being subjected to David’s aggression and self-injurious behaviour is not what I’d signed up for when I became a parent. If I’d taken a glimpse into the future and seen what our life would become when I held that baby in my arms for the first time, I’m quite sure I’d have had a heart attack on the spot. His autistic behaviour was out of control and soul destroying.
We got used to carrying around an emoji cushion so that on days when his frustration and sheer anger was sky-high, he could hit the pillow and not his head or nose, which were often bruised and blue from his attacks on himself due to autistic behaviour. His autistic behaviour was automatic a great deal of the time. On a good day, there would be only one or two incidents of autistic behaviour.
Behaviour management 24/7
Because David’s entire programme was centred on behaviour management due to autistic behaviour and simply preventing him from hurting himself, his learning was put on hold for a long time. We tried all the tricks in the book to get him to calm down. David was angry most of the time and appeared uncomfortable in his own skin. Driving with David became a scary experience and I used to worry he would knock his head straight through the glass window, which was something he threatened to do on numerous occasions. Breakfast was the worst time of the day: he refused to eat, repeatedly hitting his head and screaming as he hit the table or himself. All this behaviour was part of the autistic behaviour he’d display over many years.
The days of behaviour management rolled into weeks and the weeks into months, then years. I’m eternally grateful to my Star Academy team who managed his autistic behaviour so well during those dark days and supported us through it. We were only really at peace when David was asleep. I’ll never forget waking up to his screams and the sound of him hitting his head against his bedroom wall in the morning. I’d shake myself awake from a deep sleep to the sound of the loud thuds coming from his room. What a way to start the day! His autistic behaviour was hearbreaking to witness.
We felt robbed of all those normal things parents experience when raising a child. Conversations in my kitchen revolved around solutions to David’s anger and autistic behaviour instead of soccer or cricket matches or the other normal things parents raising a typical child are privileged to discuss. Our pain and anger were deep and mostly we just tried to survive. It felt like there would be no end to the torture we were exposed to every day.
Nothing is more painful for a parent than to witness their child unhappy or in pain. As my ABA team studied his autistic behaviour graphs and regularly updated or changed the BIP, Martin and I looked for medical answers. We spent hours consulting doctors on how to calm David down and restore his gut health and overall well-being. We had to find a way to stop his autistic behaviour which was destroying all of us. As parents we refused to accept that we would be subjected to this painful life of witnessing our child beat himself up forever. Over time we managed to calm David down and as he got older his autistic behaviour reduced significantly. This was due to the genius strategies implemented by my ABA team and also due to uncovering the underlying medical conditions that were also contributing to David’s autistic behaviour.