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The germs are winning. Yes, I know that you’ve had a cold too. Everyone has. Most have even had it worse than we do. But there is no such thing as a ‘common’ cold in a home with a child with a Foetal Alcohol Spectrum Disorder (FASD) or other sensory issues. Our house becomes a streaming, swirling, hacking swamp of germs – Biohazard Level 4 with no defences and a germ-spreader who could give Typhoid Mary a run for the title. No, cold season is not for the weak-hearted or easily grossed-out.
We all hate the sensation of a runny or a stuffed-up nose. But our guy really, really hates it. He hates it so much he gouges at it until it bleeds. I recently changed a blood-soaked duvet cover. If it’s runny, he can’t wait long enough to find a tissue, he needs to immediately wipe it, and does, on whatever is handy at the moment. Despite years of showing how germs are spread, he simply cannot remember to wash his hands before touching whatever it is that is nearby. If you remind him, he becomes instantly defensive, potentially aggressive. And it’s really not fair. It’s not his fault. So we try not to harp at him while he is ill. Despite practically following him around with the Dettol spray, our house is one big petri dish incubating all kinds of germs.
It’s hard to suppress my own ‘yuck!’ when I see less than ideal habits, but I try, try to remember how hard this is for him, the child who cannot handle certain food textures or smells, to have his own internal sensory system compromised like this. I feel the mamma bear rise in me when I see that look of ‘ew’ on others’ faces when I know how hard my son is struggling even if he might not use the tissue I just offered. And yet I push him to go to school even when he reminds me (apparently remembering some of the lessons) that he will spread germs to others. It’s impossible for him with his challenges with abstract thinking to understand my shifting rules.
Thanks for the reminders, but getting him to swallow those healthy vitamin-C-laden foods that everyone helpfully recommends is simply Not. Going. To. Happen. Food is never an easy topic around here anyway, but when the throat is sore, everything becomes impossible. The child who already doesn’t like to swallow things that need a lot of chewing (except of course sweets), gets it into his head that his body ‘can’t handle’ anything else. He’s not allowed ice cream at the moment due to his cows’ milk protein allergy, so we buy ice lollies to help his throat. Rather than have WWIII around food (especially when ill), we only buy what we are OK with him eating in one go. That might include an entire box of ice lollies, one after the other. Gone. Mainlining that sugar straight into his already wonky system (and no, he won’t eat the ones with added Vitamin C, thanks). I get it that not everyone would allow this. We all make our own red lines.
For a child who already cannot tolerate the way certain fabrics feel on his skin, imagine the discomfort when he has a fever and feels uncomfortable all over but can’t name it. His system needs a certain level of movement and impact to calm itself, so our guy never (or hardly ever unless he is really, really bad) just curls up to watch TV when he is ill. (Though earlier this week, he spent two days in bed, so this ‘cold’ was more than a ‘cold.’)
No. His way of coping is to do flips on the bed. Literally. Or to make slime (though with even less tolerance when things go wonky with the ‘recipe’). Or gets involved in any number of activities that all leave him absolutely frustrated because he has even less reserves to pull on to control those impulses to toss, smash or crunch when it doesn’t go his way. He skirts the room looking for things on shelves, in corners-one of his classic signs of increasing dysregulation. It is very hard to break this concentration or redirect this when it is happening.
When a cold isn’t just a cold and the tummy gets involved, watch out, that is a whole other circle of Dante’s hell. We’ll just leave that thought out there and move on.
Yes. We walk on eggshells when colds strike.
And of course it becomes an impossible loop because we inevitably get it too. When our heads are pounding and our own throats feel like they have knives in them and we desperately just want to sleep, we have nowhere near the parental patience that we know we need. We take shortcuts with each other, with him, with our older son (who by the way has ME/Chronic Fatigue Syndrome and when he gets a cold it sets him back in a heartbreaking way). We feel even less likely than usual to ask for help.
That’s a long way of saying yesterday was not a good day in our house.
We arguably pushed too hard. We took our guy to a new bouncy play area that was pretty amazing. He was able to act out his dream of being on Total Wipeout. This place had a rotating sweeper thing to jump over. Later, he eventually found a staff member in the dodgeball area that was so impressed by his skills that he let him flip and soar to his heart’s content in a corner.
We had done the mental calculations – letting him get the extra proprioceptive input, let him get his ya-yas out after nearly two weeks of not doing much of anything, let him go to an event with other adopted children in the area where at least these parents were smiling sympathetically and not judging regarding the ever-running-nose versus the fact we knew it might make him overtired.
In the first two minutes after the session ended, he was demanding water immediately – not able to wait until we got to the car where we had water. It became imminently clear we had deeply misjudged. Despite having repeatedly checked in with him as he was bouncing and flipping, he was not able to self-assess, to let us know he wasn’t really coping at all, that he was becoming over-stimulated, over-wrought, and physically wiped out.
We used every bit of parental skill to maneuver him home. The good news is there was no meltdown. The bad news is it took several hours of not very stellar interactions (his and ours – including some pretty poor interactions between us as a couple) until any of us could finally relax again. In retrospect, we should have listened to him that morning telling us that his nose was too stuffed up. We should have listened harder to his anxiety about going to a new place. We should not have talked over his concerns. (How many times will it take before we learn this lesson? It’s just hard because sometimes those anxieties are barriers that stop him from trying the ‘new’. So, yes, we do push. There is no instruction book to tell us when to do that and when not to. It’s hard.)
He is still sleeping as I write. I heard his music on at 3.00 am last night. He had a difficult night, my guess is that’s not unrelated. The night before he told me he had a dream about Voldemort. I should have known that was a sign. Instead of writing this, I should be disinfecting, but my own head isn’t great. My husband whose cough has become worse crawled back into bed. Our eldest whose nights and days had become inverted with his cold seems to be sleeping. I am taking this rare moment of mummy time to sort out why I feel so drained when – after all – it’s ‘just a cold.’
It helps me to remember that no, a cold in our house is not ‘common’. And while I know you too have felt rotten recently and I am sorry for that, unless you are close to someone who struggles with all these other sensory and executive functioning issues, you can’t really understand what I am saying. And for that I am glad. Just please, don’t think I am exaggerating. Don’t tell me ‘everyone has it.’ Just let me whine a bit. I will love you forever.
Now, please pardon me now while I attempt to fumigate. Don’t choke on the Dettol.