“How I love to hear him talk” my older daughter told me on the way to her ride for her army base. The little charmer sat in the back seat and did not stop chattering. He announced the types of cars that passed us, read a few words from the book forgotten in the car, and on the way made up words we could not understand. The drive went by with great fun. The princess next to me and the little outlaw in the back, cheerful and happy. His sister’s sudden absence since she was recruited is a bit rough on him and he was ecstatic from the bonus time he had with her this morning.
Who could believe we will get to this point? It used to be quite different. The quiet was worrying, was bothering our ears, a quiet we were willing to be interrupted anywhere and anytime. Waiting for meaningful words from him was sometimes nerve-wracking. We tried so hard to understand every small sound that he made, hoping for news from the kindergarten teacher about a first word, a word that will show a memory from past activity, maybe only ‘mom’ or ‘dad’. We were ready for anything, only let him get out something that we can respond to. A few years ago I visited a couple with a special child. The mother told me about the difficulty she has in appeasing him in the evenings and I remember I told her: “You at least get to hear him call you mom”.
From the day he was diagnosed, much has stopped. I felt like a captain who stalled his engines in the middle of the ocean and is forced to recalculate his course. The captain ranks were taken from me and I became a deck hand; thinking from morning to evening about the tasks for the new boss. It was not easy to change plans overnight, let go of the helm and pass it to someone else. The love between my new ‘boss’ and me is without boundaries or limits. Love that even the most reputable rehabilitation clinic would not be able to release us from. And still, it was very hard to accept this role, to be there for him so much during every day.
I was and I still am very much attuned to him. Every progress he makes is the product of hard work. Hours and hours of therapy of all kinds, concentration and attention to every small detail in his life, checking every new therapy or research that can help him, committed to accommodate his endless sensitivities and give up so many things I wanted for myself. Still, every improvement we witnessed made us happy and proud and the battery of optimism recharged. Anyone who was willing to listen got a detailed report of the goals, the way and the achievements, that as far as I’m concerned could enter the Guinness Book of Records. Hardly any situations could or can shake my belief in the way that he’s made, that we’ve made with him. His achievements are testimony to that and the harder it was to achieve a goal, the more we appreciate its value and the achievement.
A few days ago I came across a headline about that singer that was ‘hit’ when he brought to the world an autistic child with that model. The poor guy was “punished”. Sometimes I find it hard to believe that there are people who still don’t understand that some readers have a direct bearing to what is thrown on paper so carelessly, in bold type, hiding behind the keyboard. The first ones I thought of were all those kids and adults on the autistic spectrum who stumbled on this headline. Most of them read and write. I thought of their parents, whose lives are more or less like mine, and the brothers and sisters and all other people close to them.
There was never anything and there will never be anything that will make me look differently at my little wonder, including such a statement. The fact that these things were said for the purpose they were said indicates the big gap between what people think they know about autism and its real meaning. I understand I have a long way to go yet. My work only just begun.
