Sitting together at the library, in two separate armchairs, Rondel and I examine the book in my hands. It is hardcover, with no plastic library jacket – smooth and pleasing to touch. The colors are soft and cool. It is thick; Rondel is full of anticipation and I am a bit apprehensive about how long it might be. When I open it, he looks up at me excitedly and says, “I can smell the pages!” More and more often he is noticing the smells of his environment, drawing out for himself an extra level of enjoyment (or disgust, sometimes, unfortunately) by way of his extra-sensitive senses.
Making toast for my three kids and a visiting friend, I fill up our small toaster oven with four slices. Rondel has asked for two pieces of toast at once, since he is hungry and we normally make two at once for him. I explain that the toaster is full so he will have to start with one and have a second piece later, and he seems unable to accept the change: wailing, threatening, screaming, sobbing. He even says that he wishes our friend (a toddler Aubade’s age who I occasionally babysit, and who Rondel loves) were not present if it means that he cannot have two pieces of toast at once. Limerick, 16 months younger, turns to him and says, “Dude, Rondel, the toaster is full! You can have another one later!” But it is always two pieces, and it is not alright that now this time it is only one.
After swimming at my parents’ house, I tell the kids that we will need to go home soon because Grandma isn’t feeling great and we don’t want to wear her out by staying too long. Rondel instantly begins telling me how he doesn’t want to leave, how he wants to stay at Grandma’s house forever, and so on. But when I ask him what he wants to do at Grandma’s house, he doesn’t know. He ends up suggesting, halfheartedly, that he could watch a movie, his go-to answer when faced with a transition he isn’t sure how to handle (it comes up in angry meltdown-inducing transitions as well as the more frequent “stuck” moments in between activities).
Getting up in the morning, sleepy-eyed and hungry, trying to figure out the day’s schedule, I am immediately bombarded with requests from Rondel to play board games. They continue for the whole day: after Aubade nurses, while she naps, as soon as one board game is finished, as a response when I ask if he is hungry for breakfast or lunch, and so on. If I say no, he keeps asking; he doesn’t usually get angry or demand that I play, but he tries to persuade me by making it more convenient and breaking the process down into smaller steps, persistently wearing me down. For example, he’ll bring the board into the kitchen if I’m making dinner, or he’ll offer to roll the die for me if my hands are occupied. It is his passion, his obsession right now, and he cannot let it go.
It is easy to see the ways that being autistic affects how he perceives and behaves in the world, in all these little moments. Some ways are positive; some are neutral; some are challenging for him and potentially also for the people around him. But they are undeniably there, pervasively present in his being in the world, making him distinctly different from most of his peers. And so we work together to make the world he lives in more supportive, so he can develop and mature and learn without the pressure of trying to continually mask. We establish routines and give him advance notice of upcoming changes; we give him extra space to process the unexpected; we coach him through transitions by helping him visualize what is coming next; we help him find creative ways to pursue his current passion when other people aren’t available to engage in it with him at the moment. With each day, he learns and grows and finds ways to be himself and cope with the expectations and realities of the world around him; with each day, we learn and grow and find ways to love, accept, and encourage him in his journey. The larger world adheres to a neurotypical standard, and we’re not going to be able to change that – but in our home we can give him a haven to be himself, to recharge and calm down, to be unconditionally loved.