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Key points
- Understanding the flow of time has been a life-altering concept for my autistic son.
- Using schedules and calendars gives my son comfort, structure, and a sense of control.
- Offering clear choices has helped my son structure his own life and even advocate for himself.
Recently, while hanging out during our autistic son Nat’s music lesson (he is a singer in a band), my husband and I were asked kindly to sit outside. The instructor—rightly so—wanted to keep the room uncrowded because of the flu and COVID season. I realized, though, that now I would no longer have firsthand knowledge of how Nat was doing there.
This keeps happening. In the last few months, my autistic son Nat’s independence has taken a giant leap forward. It may be that he was doing that long before now, but in recent months, I have become more aware that he is indeed moving away from depending on us. The closed music class was just the latest in a string of similar episodes. But oddly enough, it was a very old education tool of ours—Nat’s calendar—that showed me definitively that Nat was indeed emerging.
The calendar has long been a source of information and comfort for Nat. My husband Ned likes to tell the story of driving Nat to school when Nat—who said very little back then—suddenly burst out with, “School, school, school, school, school, no school, no school.” After a moment, my husband realized what this charming recitation meant: Nat understood the concept of the seven-day week.
After that, we were able to expand Nat’s world more than ever before. We could now explain to him how long it would be until a given event took place and how long it would last. And, as we first discovered back then, we learned that we could use this new bit of knowledge and take him forward to related but newer concepts.
We did not know the term for this back then, but I now understand this to be “scaffolding,” in which we build the foundations of one concept to the point that we could then link it to a similar concept and thus help him connect more dots in his universe. I realized I could now say, for example, “This coming weekend is different. It will be ‘no school, no school, no school,’” and thus I would be introducing the notion of the three-day weekend. This new awareness must have been supremely satisfying to Nat; he has always loved certainty, yes-or-no, black-and-white. The predictability of the world gave him great comfort, especially when he had struggled so long as a toddler to understand the flow of things around him.
The weekly school calendar morphed into a monthly calendar for many years. Eventually, that evolved into the two-week schedule we use now. While Nat lived with us during the COVID-19 pandemic, we found that this format enabled us to list more happenings on each day and help give him a sense of having full days. Things as small as “bake with Mom” or “walk with Dad” could now become events to look forward to during a time when very little was actually happening. The two-week calendar now gave Nat a sense of purpose.
But a few months ago, after we returned Nat to his group home after his usual weekend home visit, we learned that Nat had become very upset that night. He had learned that he had missed out on going to the movies with his housemates because he’d been at home with us. It occurred to me that perhaps the schedule was getting in the way of Nat making choices. I had the epiphany that the way my husband and I would write up Nat’s biweekly calendar and then present it to him was making it impossible for Nat to choose between coming home for the weekend or staying at the group home.
I had always assumed Nat would prefer to be home on the weekends. Since he was 18 and had begun living in group homes, I had believed that he was merely OK with residential living but that here with me was his real home. I think this was the case for some time, but when the pandemic ended, Nat’s perspective had definitely changed. And I had not seen it because I had enjoyed having him here with me full-time during COVID.
My husband saw this as well and began making two versions of the two-week schedule: one where Nat came home for the weekend and one where he stayed at the group home. He would tell Nat that he must choose himself. As we usually do with each slightly new concept, we repeated the choices many times to him and also reversed the order so that we could be certain he understood that this was indeed his decision to make.
Almost immediately, Nat chose not to come home. Every single time. I was stunned, and even with the evidence of his preference, I did not believe it. I could not let go of the idea that I was no longer his primary source of comfort, the center of his universe. It may have been this way for a long time, but I was not ready for it. But now, with the two-calendar choices, I see the truth. Even though Nat has shown in other ways how much he loves his group home, I was not able to take that in because, deep down, I never thought this level of independence would happen.
But this is exactly what should be happening. All human beings must achieve their independence to whatever degree possible and take their place in the world as adults. Nat’s two younger brothers moved away. Why not Nat?
Because, in Nat’s case, independence is muddier. He still requires supervision 24/7, and so by coming home less frequently, I have to leave it to others to ensure his safety and happiness. Being kicked out of his music rehearsals is yet one more way that I will not be able to oversee what happens to him. I have to become satisfied with only a fuzzy knowledge of his days, and I have to let my mind wander away from certainty, from constantly checking in with myself about whether Nat was OK or not. There is a silence I am getting used to, a quiet in my soul that is strange but beautiful. I realize that I am perhaps becoming me, a being not in relation to anyone else.
At 61, I’m becoming independent, and I am learning how to do it from Nat.
