Blog#13: The tough meds issue

I recently needed JJ to take a tablet, just a one-off, but this instantly caused a problem. A powerful combination of demand avoidance and sensory issues means that any sort of medication has historically been almost impossible. When he was very little and needed paracetamol, we had to resort to pessaries. Not pleasant for him, poor love, but needs must when you have a high temperature.

We’re really lucky that he is generally pretty healthy (touch wood etc) and bounces back quickly from most bugs. But in 2019, when JJ was seven, a simple gum infection turned very nasty indeed and we ended up taking him to hospital, in great pain and very dehydrated.

We didn’t know he was autistic at this point, but suspected this may be the case. He refused to take painkillers and antibiotics, and then started refusing water. In hospital he finally consented to me dropping water in to his mouth via a syringe to gradually get him hydrated again. When I begged (literally, begged) the paediatrician on call for advice about the medicine at home, explaining that we suspected he may be autistic, she suggested we force him. I can’t really believe this now, but it’s true.

Now he is 10 and getting much more mature, he is aware that sometimes we need medicine to help us get better. But, as with many things, JJ feels trapped, panicked and unable to comply. He has slowly come to terms with Calpol, as fortunately he likes the taste, but everything else is a no-no.

Back to this one-off tablet. Now as you know, JJ has a low-demand environment at home and as much autonomy as we can possibly give him. So this puts me in a really awful position when it comes to the tablet. I hate tricking him. So I discussed it with him and he refused, BUT he asked me to ‘fix it’. What he meant was for me to find a way for him to take the tablet without him knowing. So, in his way this was an autonomous decision to take the medication. But he didn’t want to know about it. And I knew that if he DID find out, he would be devastated. Trust would be eroded even though I had his permission, and I risked upsetting his delicate sensory balance. With his limited diet consisting almost exclusively of dry foods, this proved an immense challenge.

I turned to a Facebook group for advice, and a woman in the US told me how she had given essential medication to her daughter by taking the cream out of Oreos, mixing a ground-up tablet in, and replacing the cream within the biscuits. Her daughter had consented to this, which was important, and had been able to cope and take the medicine.

So, JJ’s dad and I thought of the humble custard cream, a favourite of JJ’s, and gave it a go. Half an hour, and almost an entire packet of custard creams later, we had managed to successfully split one without the biscuit breaking. You wouldn’t believe how hard it was! They’re not splittable like Oreos! Anyway, the tablet was ground up and mixed in, and the cream replaced. JJ called for a snack, and happily ate the biscuit. His spidey-senses didn’t appear to tingle, as it went down very well. I was so relieved, I had to have a lie down.

Consent and respecting their autonomy is so important for our PDAers (and for any child for that matter). But so is keeping them healthy. This issue will of course raise its head again in the coming months and years. All I can do is to try and stay calm, discuss it openly with JJ when I can, and encourage him and make him feel as safe as possible.

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