April is autism awareness month
Day 27: Pain and illness
Dylan’s not able to communicate and his sensory differences mean that he doesn’t react to pain and sensitivity in a typical way.
For example Dylan will strain a cough instead of saying ow or crying when he hurts or bangs himself, he won’t rub his sore hand or knee but instead grab his face adding even more confusion to location of the injury.
He never comes to us for comfort or to show us what he has done. He very rarely cries due to pain, only frustration.
Before Dylan vomits he will cough intermittently for a few minutes. The cough is different, but only subtly. It’s a cough that we immediately notice as being a sickly one although to the unfamiliar ear it will just sound like a cough. Then he will be sick.
When being sick Dylan won’t go to the toilet or vomit in a receptacle but will remain where he is and vomit all over himself. If it is night time and he is in the bed he will lay and vomit on himself, this really worries me due to the risk of him choking or aspirating.
A headache, tummy ache, all the internal aches and pain which can give an idea of further illness are impossible to recognise. In Dylan’s whole life we have not been able to identify a time when he has had stomach ache or a headache.
He simply has not been able to tell us and although we are pretty fine-tuned in Dylan’s non-verbal communication there has been no outward signs that he has been in discomfort.
Even before the worst sickness and diarrhoea he will eat a full meal and then just bring it back up fully a couple of hours later. I don’t know if he feels ill but is unable to recognise that feeling and that eating will make it worse?
Or does he eat because he feels he has to where we encourage him to eat his dinner? We will naturally encourage him to eat his meal, if he feels unwell and eats more as an act of compliance; that’s an awful thought but a totally plausible one.😣
God forbid if there was something serious going on for Dylan, a headache, ongoing pain, even something as simple as constipation which left unrecognised could be catastrophic; it’s a constant guessing game and requires ongoing detective work.
Thankfully we’ve only had one trip to hospital.
Dylan woke up one morning, came downstairs and was dragging one leg behind him unable to weight bear on it. Seemed he just woke up like it.
He was able to move the limb fully but unable to weight bear. It was bizarre, he couldn’t tell us what happened, neither did he seem bothered for us to know, he just wanted his breakfast.
After he had eaten but still not able to walk properly we had no choice but to take him to the hospital to check if something serious had happened.
The doctor in childrens A&E spoke directly to Dylan. He didn’t even look at her. I had to explain that Dylan is unable to communicate what has happened; I don’t have any recent history to be able to tell her what may have happened.
Dylan had an x-ray and thankfully all was well, it was a suspected soft tissue injury that Dylan had sustained by maybe walking at a funny angle getting out of bed and then jarring his knee. He was skipping around again by lunchtime, but things could have been different for us depending on the approach from the doctor – how suspicious does it look that a child gets taken to hospital with a potential injury and there is no history? No one has any idea what happened. Dylan’s unable to explain what’s happened to him or what hurts. It’s an uncomfortable situation to try and explain and there’s a constant fear of appearing like a neglectful or abusive parent in these situations. He’s so vulnerable, it’s really worrying.
It is a plan to try and teach Dylan how to explain how he is feeling but it’s about teaching it in the moment. It feels a bit mean when he hurts himself to immediately grab his iPad to be able to give him the words to explain to him what has happened but it’s the only way to teach something as subjective as feelings.
We have done this with happy, sad and angry as emotions and generalise these feelings with Dylan labelling pictures of people with tears or smiles to demonstrate his understanding that others can feel the same emotions as him also.
It’s a very basic way of looking at things but whereas Dylans emotions tend to come naturally to him, it’s the interpretation of them which can be confusing.
With injuries and sickness I’m not sure how appropriate it is to show pictures of such situations – the only thing we can do is describe it in real time as and when it happens-
Thankfully it’s not that often!