When a new rigidity or trigger pops up, or an established one changes ever so slightly, we are all caught unawares.
Our son is right of centre on the spectrum and completely nonverbal. He can’t tell us what he’s thinking or feeling, except by crying. He will be absolutely fine for weeks, and then suddenly go into rages around things he’s done everyday without any bother. From the outside it’s inexplicable, because everything is always the same here at home, nothing ever changes. If we do change something minor in his daily routine, it’ll only ever be out of pure necessity. But those small changes aside, we’ve found that every few weeks, something that was formerly comfortable and familiar for him, suddenly becomes completely intolerable to him, and he has no way to communicate that to us other than by going into meltdown.
Though his reasons for needing a particular detail within a specific routine to be different are unknown to us, they make perfect and reasonable sense to him, and it’s sometimes important to remember that. Because for me personally, and I think for Monty too, Aidan’s ever-changing list of triggers and rigidities, is by far the most exhausting aspect of our special needs parenting journey. But these small details are very important to Aidan.
Tackling this requires a very high level of intensive detective work and troubleshooting to get to the root of a new problem. So much so, that we often joke that the FBI would be blessed to have access to my very niche skillset, because no one reads body language, deciphers nonverbal cues, or does investigative research, quite like a special needs mom!
When Aidan’s rigidities shift like Saharan desert sands, we laboriously toil through a trial and error process to see exactly what it is that’s suddenly causing an issue. But let me tell you truthfully, there are days when I want to get into my car and keep driving… because it can be extremely overwhelming at times. Monty always gives me time and space to process, and lets me feel all my feelings, but if ever I utter the words, “I can’t do this!”, his answer is always the same: “What do you mean you can’t do this? We’re doing it! There’s no other choice.” And he’s absolutely right. Because no matter how rough it can get at home, Aidan is our child and we are his parents. We have to keep on keeping on. There’s no other option – that’s just the gig. So, we show up everyday and do our best. Because our best has to be good enough. But we spend hours and hours chatting together after Aidan has fallen asleep, about what a new trigger could be.
Once we’ve brainstormed, we spend days testing our theories. There’s nothing to lose by being wrong at this point, because the routine is already causing meltdowns. And some new triggers take a long time to figure out, but we just keep trying new things until we get it right. A few weeks later, everything changes again. So you’ve got to have real stamina to keep troubleshooting as creatively and dedicatedly as possible in this life. And that’s why care for yourself as well as for your child is so important. Because we can’t provide the level of support needed to them if we are running on empty.
I’ve found personally, that keeping fairly detailed notes of new triggers is incredibly helpful for me. My Notes app on my iPhone is chock full of lists and random musings! Sometimes it’s useful to be able to go back in my notes and see where something specific changed, so I can better approach a subsequent change. I’ve also found these notes are incredibly useful for members of Aidan’s team: His ABA therapist, his OT, and his neurologist. By keeping track of how things are evolving or regressing, we can always be sure that we are not only addressing all of Aidan’s current challenges, but we can sometimes anticipate new ones. And being preprepared is really the best skill we can have as parents and caregivers! Because it allows us to respond, instead of reacting, and to feel more in control of our lives, rather than simply helpless in the face of something that feels insurmountable in the moment.
I have detailed some of Aidan’s specific triggers and rigidities in my subscriber-only blog, “Rituals & Rigidities”. Please sign up to subscribe, or login, to read more!
