When the chips are down or when the chips are up (heck, pretty much any occasion that we can think of), we make biryani. Either to celebrate, or commiserate, or just because. I made biryani for Lil D last night. Just for him and me. Because I didn’t know what else to do to celebrate our time together.
This past weekend our family, minus Lil D, traveled to Detroit for my niece’s Ameen (a culturally-based religious ceremony that celebrates when a child first finishes reading the Qur’an). It was the first time in all our trips to Detroit that we didn’t take Lil D with us. It was the right decision. This wasn’t a trip just to visit my sister-in-law’s family and hang out. This was specifically to attend a big function. And big functions are things that Lil D doesn’t handle well.
Still, it was sad. It felt like one more part of life he was dropping out of. As I mentioned this to my husband, he said that perhaps as Lil D grew older, we need to give more respect and deference to what makes him comfortable. But when you’re raising a child with autism spectrum disorder, you have to balance between pushing him beyond his comfort zone to be a part of the activities of our lives, and realizing when pushing him has no discernible benefit to him, us, or both of us.
And so, Lil D stayed behind with my parents. I came home after the weekend to be with him while the rest of our family stayed on in Detroit. This brought on a very rare occasion in my life – time spent at home with Lil D with everyone else is gone.
So, this is what it is like just to focus completely on him. There are so many little things I’m noticing again, things that are classic Lil D, things I became used to in the past years: I open drawers around the house to tidy things up, and I find teaspoons, forks, big wooden spoons, toothbrushes, and strands of metal beads in every crevice. Crumbling cookies, little medicine cups (that’s where they are disappearing to!), the remote control, my long-lost glasses.
Lil D has this habit of picking up these items around the house and randomly depositing them in drawers. There are always a collection of cups and glasses in the upstairs and downstairs bathroom sinks, where he like to fill them with water, take one sip, and then dump the cup in the sink. And, the counters in our bathrooms often have a film of soap on them, from Lil D pumping out foam soap and then rubbing it all over the counters with his fingers. It’s a sensory thing.
During the months of last spring and early summer when he refused to leave his room, refused to get out from under the heavy covers of his bed, the drawers in our house remained relatively tidy and held the proper stuff in them. Bathrooms were cup-free, counters were soap-free. Beads were not found in all corners of the house. Underwear stayed on him or in its proper drawers. (He was so distraught and lost in himself that I would have to physically prompt him to go to the bathroom on a set schedule. Many accidents were had.)
And so now, though there are alarming behaviors and habits creeping back, though I am seeing a rise again in meltdowns, aggressions, the reemergence of sweaty palms and feet and hair pulling, the uptick in that awful, gut-wrenching self-injurious behavior that is a punch to my soul as well each time he engages in it – I still see signs of the Lil D I know. That Lil D, whose familiar quirks and habits used to be a daily annoyance, but were so missed when they disappeared behind the shadow of this autism upsurge.
That Lil D, whom I refuse to let slip from my grasp.
That Lil D, who when he is trying to ask me for something and I tell him to get his iPad, goes over to the desk where it is stationed, brings it over to me, finds his Sounding Board app, selects the proper board out of a choice of four, then taps on the picture of the shower while saying, “Showa,” to indicate that he needs to sit in the shower and let the water beat down on his body to feel better – all this done independently.
That Lil D, with whom I lie down in the evening, and I sing to him the familiar tune I have sung to him since he was a baby, trying to coax him to say my name: “I love Lil D. Lil D loves Mamma. I love Lil D. Lil D loves?” I wait for him to say the last word. He has never said my name with purpose, and he hasn’t participated in this game for years. But as I sing it to him, lying on the bed next to him, our heads on the pillow, faces turned towards each other, noses nearly touching, breaths mingling, and his eyes searching mine – not looking through me as he so often does, but looking right at me – I repeat the song again.
“I love Lil D. Lil D loves Mamma. I love Lil D. Lil D loves …?”
“Mamma,” he says on cue.