Keeping Hope Alive
Extract from “Saving My Sons- A Journey With Autism” page 296
No one will deny that the devastation of the experience of autism can result in the loss of hope. Every day is a physical and emotional slog as one works towards achieving set goals. Hitting a brick wall trying to save David was a regular occurrence for us. It was incredibly difficult not to lose all hope, especially when we’d invested so much time, effort and money in his treatments. This type of outlay – heavy in every way – inevitably sets up expectations. When these aren’t fulfilled and your whole world collapses, it’s a challenge to believe that things will eventually work out. The more we focused on the negatives, however, the deeper we dug a dark hole for ourselves. In time, we learnt that finding the positives and staying focused on the blessings in our lives helped us to escape the gloom and despair attached to our negatives. It was the things we could have taken for granted each day that we made a conscious decision to acknowledge; I’d say them out loud and take a moment to really think about the fact that I had a roof over my head, food to feed my family, a supportive husband, my health, and so on. Having access to the true experts in the field of autism and being guided by them certainly also instrumental in keeping my hope alive. Because we had to push through the hurt and pain time and time again, however, it was natural that we should feel discouraged at times. Tackling the long list of endless problems autism presented wasn’t easy. Yet keeping a perspective on things and unravelling each stumbling block until we found a way to fight back always kept our hope alive.
Hope implies a certain amount of perseverance, such as believing that a positive outcome is possible even when there’s strong evidence to the contrary. As time wore on and David got older without making all the improvements we’d hope for, we did feel our hope slipping away and scrambled to keep our fear and anxiety in check. Although a voice inside me reminded me of the complexities of our circumstances, I kept on hoping. This despite mounting evidence that David wasn’t turning the corner or making his way out of the woods.
We still hoped to get to discover his voice; do those things ‘typical’ families do, like going to a restaurant or window-shopping at the mall; witness his growing understanding of the world around him; and hear him express himself effortlessly. Above all, we carried on hoping that we would eventually stop seeing him so angry, self – injurious and destructive.
For many years we clung to the hope that he’d feel better and wouldn’t have to experience, the physical pain we knew he suffered from, including tummy pain, nausea, headaches, dizziness and feelings of discomfort. We held onto hope even when the obstacles we faced seemed insurmountable. There was simply no choice. Giving in to autism was never an option. We were determined in our resolve to find a way, to keep fighting even though we got knocked down by autism countless times. Every knock hurt like hell but we got up and fought back.
There were times when we felt as if autism were a sharp blade placed on our neck, waiting for us to make a false move so it could cause our instant death. There were also many moments when I had wondered how we would manage to survive even one more day of that kind of life. Holding on to the belief that we’d be saved, no matter how bad things appeared, was powerful.