Autism and illness 13


This week Hayden has been really poorly. Something very rare for him. He deals with illness much like he deals with pain, it doesn’t really phase him. If he falls or bumps himself it is usually followed by a quick run up and down the house accompanied by a little scream, sometimes he needs a brief cuddle, but then he carries on his business as if nothing has happened. Only last weekend he bumped his head, on what I don’t know, I was upstairs getting washing, but the screams from downstairs told me he had really hurt himself, twenty minutes later a huge lump and green bruise had appeared on his head. Something has to really bother him for him to make a fuss. He has never really been poorly, little temperatures and colds here and there, but that is about it. He has also never had a stomach upset, which is surprising given the things he has eaten over the years. All of this makes it really difficult to tell if he is ever a little under the weather. The only tell tale sign being that he is a little less cooperative than usual. however, a lot of this can come from tiredness too.

autism and illness

On Monday I sent him to school as usual, and without much resistance. When I picked him up his 1:1 mentioned he had been quite hot throughout the afternoon and wasn’t really up for any activities. They had also managed to get him to stand still for a school photo…he was definitely under the weather.

Throughout the evening his temperature got higher and higher. He did nothing but laze around on the sofa, and actually fell asleep. Yes, that sent me into a fit of panic thinking that would mean an all-nighter. He wanted nobody but Daddy to comfort him (luckily for me with the extra evening sleep!). He was definitely not feeling himself, but knowing what is wrong without any obvious symptoms is just impossible. He is unable to tell us what hurts. Think back to what it is like having a baby that is poorly, you just have to play a guessing game, or get yourself to the doctor’s sharpish. I’m not one to be at the doctors for everything anyway, but taking Hayden actually fills me with dread.

We knew he wouldn’t be well enough for school on Tuesday, and with his intense need for Daddy, James let work know he didn’t think he would be in the next day. We were right. The next morning Hayden looked awful, he didn’t come downstairs until a lot later than usual. He was boiling hot and didn’t look himself at all. We still had no idea what was wrong with him. It is a horrible feeling not knowing what is hurting your child, you want to take away their pain, but other than Calpol there was nothing we could do but administer lots of love and cuddles. I came back from my PTA meeting to find James on the playroom floor being cuddled so tight, Hayden just would not let go of him. Two hours later he seemed absolutely fine again. Back to his usual energetic self. He was definitely going to school Wednesday.

Lunch time Wednesday we got a call from school saying he was really not well and we needed to collect him. This is one of the problems with not having language as a way of communication. You make assumptions based on appearance, but in hindsight, knowing how Hayden usually handles illness and pain means that just because he seems himself does not always mean he is better. James decided to pop in the doctors on the way back from school and we got an appointment later that evening. Turns out he has a severe ear infection and with how bad it was he was probably in a lot of pain. He was prescribed Amoxicillin, which I am all too familiar with after my own issues with ear infections as a child ( I couldn’t wait to lick the spoon!) but here lied our next challenge.

Trying to give Hayden anything he doesn’t recognise isn’t easy. Some bright yellow liquid on a little plastic spoon? Not a chance in hell was that going down. We did our usual trick and added it to a small drink, why on earth would we think he would drink a cloudy yellow substance mixed with his usual favourite of flavoured sparkling mineral water? Amoxicillin mixed with coke? Looks like someone has mixed some milk or ice cream in there. He was dubious but he drank it. Thursday was more of a challenge. We kept him off again, knowing it would probably make it worse. James was on a course so I was unable to get Ellis to pre school either. Fun day for mummy! He refused his medicine drinks and got worse through the day. His eyes were also now blood shot, a bit gunky and causing him a lot of pain. He wouldn’t stop touching them but I tried my hardest to stop him, knowing if this was conjunctivitis touching them again and again was just going to make it worse. He cried all afternoon in pain and I couldn’t do anything. I felt helpless, I didn’t have the strength alone to force any kind of medicine down him, and I could do nothing but cuddle. Eventually he fell asleep at about 5pm so I could get the other boys dinner sorted.

This morning he looked just as poorly, his eyes were bright red and he was still refusing anything that didn’t look totally normal. We got him another doctors appointment in the hope there was a clear antibiotic we could add to his drink to ensure he was actually getting the medicine he needs, we also needed to address his red eyes, was it another infection? Yes it was and the only thing he could take for it was eye drops. Now at 30 years old, forcing myself to use eye drops is difficult, and he needs to take these 4 times a day!

The medicine wasn’t actually clear, it is cloudy, he doesn’t like the taste and we just have to try and persevere in the hope he will at least take some of it. The eye drops whilst he fights, he will lay down when we mention them, it just won’t be something I can do alone. One of us has to pin him down whilst the other attempts to open the eye and administer the drops.

This week has not been easy. Not knowing if he is ill or tired, not realising how poorly he actually is, not being able to help him and just feeling like he will never get better because giving medicine is a huge battle. Watching any of your children poorly or in pain is the worst feeling in the world. Not realising they’re poorly brings guilt. Pinning a child down because you know it will benefit them in the long run brings guilt, not knowing whether they’re actually better or just dealing with the pain the way they know how? Who knows, I will let you know next week!

 


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