Lonely Caterpillar
 

‘I keep dancing on my own’

This weekend My little Superhero Elijah ended up being admitted to hospital.

On Thursday evening he was a bit out of sorts and by Saturday lunchtime he had a burning temperature so Ben, on the doctors advice, took him to A&E just to be on the safe side. Due to Elijah showing discomfort in his right hand side they took him straight through to children’s a&e where a surgeon saw him and confirmed suspected appendicitis and admitted him to the children’s ward.

The thing is Elijah hadn’t told us he felt upwell, the only way we knew was by the change in his behaviour and because I’m slightly obsessed with checking both kids temperature when they are out of sorts. We only knew his side was sore because we were doing the usual checks for rashes etc and checked his side (due to Bens appendix almost bursting 6 years ago, we always check this).  When Ben arrived at the hospital he explained all of Elijah’s symptoms as well as his allergies and pre existing conditions including his autism. All the staff with one exception were great with him they understood his difficulties and our worries and they worked hard to get to the bottom of the issue. (link a bottom of this blog).

Elijah’s Autism might seem irrelevant to this situation but it really isn’t. You see Elijah doesn’t experience or explain pain in the same way a neuro-typical person does, his senses are heightened but he cant work out what’s wrong, what the difference is, or why he needs to tell us what’s going on. He also doesn’t have the same concept of fear or danger which is the trigger that sends most of us off to the doctors. And you may or may not have seen earlier this year the article that explained the lower life expectancy of people with autism? It firstly down to Autism having key links with epilepsy and high suicide rates and another reason was that people wth autism do not always get symptoms checked out and are more socially isolated and so minor illness can become serious without anyone noticing.

Because of this you can understand my anger when a new surgeon came round to check Elijah on Monday morning to give a final decision on appendicitis (by this stage our first surgeon thought it wasn’t his appendix and was possible viral), and he asked me why Elijah wouldn’t speak to him. Now most 6 year old boys are going to be intimidated by 6 people standing around him and especially with this mans tone and attitude but I explained he struggles to talk to strangers and as his notes state he has autism. The Sergeon didn’t hear me and asked the nurse to which she repeated , ‘he has a history of autism’. This man then turned me and said ‘a history? its gone now then?‘ , I explained no it wasn’t (what sort of medic was this man, autism doesn’t go away.) he then turned to me and said that he doesn’t believe in labelling children, its an awful thing, Elijah doesn’t seem to have autism and shouldn’t he be running around the place if he did? what is autism ? (which I actually had to explain), sure everyone one is on some sort of spectrum so what’s the point in a label?

He also asked me was he low functioning , to which I explained how all those terms are being done away with, my son is technically high functioning, (he’s in the top group in his class has been given p3 work in some cases and reads David Walliams books at home with ease and can spell anything you ask him to). Whereas in hospital he couldn’t remember names of things, he couldn’t read a toddler book and could barely construct a sentence, so no matter where on that spectrum you are, your struggle is real.

I had gone bright red by this point not sure whether to shout or cry and I just went silent, I could see the other five looking at me in sympathy and one nurse did keep trying to change the direction of the conversation. I couldn’t believe I had just experienced such ignorance in the very place that was supposed to care for my little boy and understand him.

The paediatric doctor then came to Check Elijah and this then proved EXACTLY WHY I ‘LABELED’ my son. This doctor was kind and spoke to Elijah in a way that made him want to actually answer his questions , the very first thing this doctor did was look into Elijah’s mouth and seen his tonsils were full of puss and his throat was red raw. No other person in three days in hospital had looked in his throat and I don’t blame them for that, Elijah never once said he had a sore throat and he only stopped eating on Sunday. A neuro-typical child would have been complaining of a sore throat for around a week before their throat looked like this, because Elijah couldn’t communicate the pain and the problem of a very simple infection became a nasty dangerous one. So people may look at my stressed out Facebook posts from the weekend, (On Sunday night both Ben and I were seriously worried for our little boy) and then on Monday have scoffed at the fact he was diagnosed with tonsillitis and sent home with an antibiotic, but this got far further than it would have under regular circumstances, and could have been even worse had it not been caught.

I love Antrim area hospital, they might get a bad reputation sometimes but I have only ever experienced excellent care from them and this time was no exception. We met some of the kindest nurses, the most professional doctors and conscientious surgeons but one ignorant professional can have a lasting impact. I now worry for my son as he grows older. In my mind I have no doubt he will grow up, marry, have lovely kids and about a million animals. But what if he is alone? Will he be able to bring himself to a place that forces unwanted social interaction to be met with someone who doesn’t understand him and doesn’t look below the surface for the cause of the problem? Will he struggle to get basic care that we all have a right to access?

Will people every actually get their heads around autism and what it truly means? I pray that he will only ever come across those wonderful people we met, that they always outnumber the eejits. That he lives a full happy life surrounded by people that always have his back. At this moment I feel sad for our autism journey, I feel very much like I’m dancing on my own, to a tune nobody is really hearing.

https://www.theguardian.com/science/2016/mar/18/premature-autism-deaths-are-hidden-crisis-says-charity

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