Even when all of the scheduled therapy sessions have to be officially canceled for an illness.

Tony woke up one day this week with a cough sounding like a seal bark, and as a mom who nursed Hannah through several bouts of croup when she was little, I felt pretty confident that I recognized what was going on by the sound of his cough. But we still did two COVID tests on separate consecutive days just to rule that out for the comfort of everyone who might need to interact with us, because those are the times we live in.

I don’t know that any child who has croup feels great. Tony’s only had it once before, and his case was milder than any of Hannah’s. I would hold her upright wrapped gently in my arms all night in the Lazyboy we had at the time for the first couple nights with each of her infections because her breathing was so rough. But, when a kiddo struggles with wanting a rigid routine and can’t handle transitions from one activity to another well (or has sensory differences like tactile defensiveness), the types of things a parent needs to do to help them through that kind of illness can be pretty distressing for the child. And a parent of a kiddo with profound sensory differences cannot count on being able to reason with the kiddo and gain calm cooperation for what is needed, but is more likely to encounter a more intense fight or flight response no matter how gently the matter is approached. Which is part of why we do some of the tolerance of stimuli work we do in our son’s habilitation programs, so we can be ready for moments of illness like this.

With Tony, we’ve also done a lot of work with him since the start of the pandemic focused entirely on tolerating changes, with me continually emphasizing to him that change is the actual routine, that it is the only thing we can truly count on happening in life. In the past few months, the improvements in his ability to maintain emotional regulation with change has really shown through- even with all the stress inducing happenings going on over here. I know I mentioned the recent compliment a few posts back from his music therapy team that they’ve never seen him be so flexible as he has been recently, but they also let me know a couple weeks ago they were mastering out his self-regulation goal for music therapy and advancing to focus on cognitive-motor regulation (that mind/body motor planning connection).

For all of that, when he’s sick, I have to think therapeutically about how to frame a necessary change so that he’s more likely to accept it. That first morning, we needed to get him out into the cold air for his lungs, and I thought the best chance of that would be to tell him we’d be eating his morning chex out on the porch (so I combined a change in location/need for clothes with a part of his morning routine he loves without changing the time). When he wanted to keep his clothes on to earn a treat after we came in (something we’ve been doing in hab to expand his tolerance, we’re currently up to three hours) I let him keep them on as long as he wanted without setting a timer (I think it was what he wanted to do because it gave him a sense of routine). We weren’t actively clocked in and doing therapy, but I recognized he was looking for a sense of normalcy, so when he felt like he was ready to take them off, I gave him a treat because certainly it’s something he wouldn’t have normally done, to keep his clothes on after coming inside.

Sometimes the things I observe while providing care as his mom let me see how I can improve the efficacy of things I do in therapy. One of my ideas for how to help him learn tolerance for COVID testing was using a Q tip to swipe in his nose to practice, and we first started with him looking at the Q tip, than touching it, then letting me touch his nose, then 1 second in each nostril without moving, moving up to swiping it, then progressing the time, etc. One of the things I noticed while COVID testing him this time is that for some brands of at-home tests, the swab has nowhere near as much padding as a Q tip, and so it creates a pokier feeling in the nose for a kiddo with tactile defensiveness.

I was able to talk him into cooperating (really the cookies did the talking), but it occurred to me we should redo the entire desensitization sequence in therapy with Q tips that have most of the cotton pulled off to help him better acclimate to all possible real-world sensations for that. I also gave him permission to hold my hand and wrist, so he could feel like he had some control over what was happening.

He won’t always let a provider do something as seemingly simple (because from his perspective, it’s not simple, those sensations were once quite aversive for him and still can be less comfortable for him) as swabbing his nose for a COVID test or putting on a Band-Aid (as we saw when he got his second COVID vaccine dose and his arm was accidentally scratched by the needle while the nurse was pulling it out). He was willing to let me put the bandage on, but not the nurse. Despite the bleeding, he wouldn’t keep it on for more than the 15 minutes we’ve been working on for hab.

Shown above, a picture from the second COVID shot and a picture of his bandaged elbow from last night.

Unfortunately for our poor little guy, he ended up with an infected sore on his elbow towards the end of the first day of this current illness that keeping on a Band-Aid would be preferable for. We talked about why keeping on a Band-Aid as long as possible would be a good idea, I gave him skittles and praise for keeping it on as long as possible (the first couple were still removed in under an hour because that is what he wanted and it is always better to gain his cooperation if possible in this type of situation, but it is especially critical when there’s no other way to achieve what is needed). Today he’s had the current Band-Aid on since 8 am. And he slept with one on the sore willingly last night the entire night. He’s never been able to keep a Band-Aid on an actual injury or wound before.

I’m not happy he got sick. I never am for either of my kiddos, though it is a part of life. But I am really happy we’ve managed to have such a profound breakthrough on the tolerance of wearing Band-Aids when needed. There is so much diligence involved in keeping him from getting cuts, literally there’s a whole part of my brain that can never relax because it has to focus on that. Perhaps maybe now it can take some time off- from that at least.