I’ve been trying to think of a word to describe how Alphonse has been in the last month or so, but no matter how I rack my brain to do it, nothing seems to fit. Aware? Conscious? Sensitive? I find myself at a loss for words. Somehow, these don’t seem apt at all. Then too, if I use them, do they betray a prejudice against individuals with autism by attributing them with the lack or absence of these traits? Alphonse is certainly aware, conscious, and sensitive of us and his environment; if at all, he is painfully burdened by an over-awareness of everything that goes around him. Perhaps the word or words I am looking for are more related to a perceived emotional distance, an aloofness that disconnects him with other’s intentions and motivations.
And yet, today, even as I write this, Alphonse seems more here, more present with us these days. I can’t explain it at all. I don’t know why or how, he just is.
He tries to reach out more often, making himself seen and heard. Would you believe that we’ve been able to have conversations with him- funny ones at that? Despite his inability to communicate through spoken language, he has managed to make his responses understood. There is also a remarkable degree of restraint in him these days, something we have not seen in a long while.
Consider this. When his nanny absconded early last year, despite a promise to return (with an advance on her salary, a paid-for return airplane ticket, and a borrowed cellular phone), Alphonse didn’t break out in tantrums right away. We had given him a social story on his iPad to read before and during his nanny’s absence. I made sure to include a calendar marked with her vacation days. Three days after she was due to return and with news that she had eloped, Alphonse finally had that full-scale meltdown. He pulled our hair, threw all our borrowed dining chairs, and even tried, on several occasions, to bite us. It took about a week before he calmed down.
Knowing his reactions to loss, we resolved to make the next transitions smoother. With our previous successes with social stories fresh on my mind, I worked on poster pictures for Alphonse, giving him copies on his iPad and printing out some to post on the walls. I even kept copies on my mobile phone so would always have them on hand and ready for viewing. We showed the pictures to him every day, and after about two weeks, he began to really understand what they were for.
When another nanny informed us of her plans to “retire” soon after the others, we redoubled our efforts at showing him these pictures. Three weeks before his nanny left, I gave him another social story, a goodbye book to prepare him for her departure. We took pictures of his nanny waving goodbye. We told him she would not be coming back, but that she would keep in touch through Facebook and phone calls. On the night he first read the book, Alphonse shrieked and yelled in heartbreak. With tears streaming down his cheeks, he proceeded to throw what he could lay his hands on BUT he did not pull our hair. When I ran toward him to comfort him, he sobbed even louder, burying his head in my shoulder. I noticed his hands were clenched in tight fists. He had clenched them so tightly that his hands were bright red and his nails had dug marks into his palms. That was when we began to realize the extent of his self-restraint (no pulling hair, Alphonse!) and his new-found understanding of what he may and may not do.
That he’s been more attuned to us continues to be a source of our amazement and joy. We ask him questions and surprisingly, he gives us answers. The easiest questions are those he can reply to with a nod or a shake of his head. Of late, he has also started verbalizing more, often accompanying his nod with a “Ya” and the shake of his head with a “Na/No.” Even more amazing, he would say “Ayaw ayaw ayaw” (I don’t want to, I don’t want to, I don’t want to) when pressed into doing something against his will (like bathing with cold water, heehee). When presented with choices, it’s comforting to know he knows what he wants and can often choose to his satisfaction. Little things to many, but for one who has never had his own voice, they certainly mean a lot.
Just this New Year, on the way to lunch with the rest of the family, we asked him what he wanted to have for lunch.
Do you want chicken? Na.
Do you want pizza? Ya.
Pizza Hut? Ya.
Yellow cab? Weh? (He’s never had Yellow Cab Pizza, I forgot.)
Poor thing. We ended up eating at Max’s Fried Chicken because Shakey’s was closed and we didn’t want to take another stab at finding parking. It took a while before his gloomy face brightened and only after we bribed him with a whole Max’s fried chicken. Still, it makes us happy to know he has opinions and choices; we only need to find a way to help him bring them out in the open.
I can only imagine what the future has in store for us and for Alphonse. But if this is any indication of what we can expect, then we shall see Alphonse evolve and continue to grow as he ages. All children grow, and children with autism are no exception. But Time, it seems, is what they need the most of.
For now, it is enough he is here, present and accounted for, struggling against the mighty wall of his disabilities. We shall continue to arm him with the picks and axes he needs to tear down these walls. Time, I pray, will do the rest.