You know what I don’t understand? Apart from Advanced Calculus, I mean. And word problems. It was always hit or miss with those. But in the grand scheme of things what I really don’t understand is why children have cancer. It’s horrible enough for adults, but even before my dad’s bout with it, I wondered why kids had to go through that level of suffering. Why any level of suffering? I could not wrap my mind around it. Sometimes I would pace my hallway or lie in bed at night, cursing because it didn’t make sense, because it shouldn’t be this way. I just couldn’t understand why.
Nigel is enjoying the afterglow of being a graduate. He sleeps in every day, except for the early morning dental appointment he had last week. Sure, he’s had summer vacations for many years, but this is different, and he feels it. He’s earned this; he’s had to work above and beyond the call of duty to achieve it. And through the generous graduation gifts of family and friends, he’s been able to purchase a new laptop for himself, which he has graciously lived without for over four months since his refurbished one crashed. He never complained, not once. I was shocked and grateful.
And after over 18 years of either writing thank you notes for him or helping him to write them, I knew that I would need to facilitate the thank you notes for the new computer. I also knew that my efforts would be met with monumental resistance. First of all, although I’m not sure if it’s been formally diagnosed, Nigel displays characteristics of dysgraphia. He refused to hold any writing utensil until age 7. At the age of 13, he was finally able to indicate to me that writing caused pain to his hand. He supposedly had access to an AlphaSmart at school, although I’m dubious as to the extent of that. As it stands now, his printing looks like that of a seven-year-old (at best). I do not say that to embarrass him – on the contrary, to highlight how challenging it is for him.
Therefore, the eleven thank you notes were typewritten. I helped him to compose the messages, and then I showed him how to format the page so that he could cut them out and glue them to the inside of the cards. The only things he had to write manually were the names and addresses on the envelopes, on which I drew guidelines with a pencil. I also wrote the addresses out on a separate sheet of paper so that he could see them better to transcribe them. It was quite a production, and one I undertook only because I knew that, with assistance, he could do it. If he couldn’t do it, I would have written them on his behalf as I’d done previously. Our family and friends understand.
But it wasn’t his dysgraphia and help with formatting and content that was the hardest hurdle to overcome. It was the fact that he couldn’t understand why thank you notes were necessary. The social understanding that is compromised by autism causes this. Yes, it affects one-on-one social interaction, as we all know. But even someone who’s had years of social skills therapy may still have trouble with the “big picture” application of social understanding – why we are expected to do certain social things that people without autism take for granted. The why is inherent in our social understanding, an area in which Nigel is still significantly “from another planet,” as he said years ago to describe himself.
Even though I had given him ample warning (days) that we were going to do the thank you notes, when the time came, he flipped. For a full ten minutes he paced and tiraded, he yelled and cursed about how he couldn’t understand why he had to do this. It didn’t matter that I was helping him; he just could not comprehend the purpose of thanking someone for a gift. He couldn’t wrap his mind around it because the part of his mind that would understand it works differently. Finally, much to my relief, he calmed down and began typing, and although the whole thank you note process took at least an hour, he never complained again.
I’ve come to my own conclusion regarding childhood cancer: It just is. I will never understand it. It will never make sense. I just have to accept that that’s the way it is. And I suppose that after Nigel got his frustration out of his system, he realized that he would just have to accept the fact that properly acknowledging a gift is just the way it is. He may never be able to know why; it may never make sense to him. It just is. Apparently he’s now okay with that, and so am I.