I thought I was done with writing about nuts for one week. But hot on the heels of my last post (see Question Time) came today’s little adventure. The short version is that B was hospitalised following an extreme reaction to nuts. He’s back to his normal self now, his mum and I less so.
The longer story goes way back to the day I found out he was allergic to nuts. This was in the pre-verbal days. Back then he wasn’t autistic, he was just a massive pain in the arse. At least that’s what I used to think as he whined and stropped his way through each day, uncontrollable and uncommunicative (we’ve come a long way, my son and I). So when he came marching up to me demanding milk, with a kind of gasping, breathless croak, it took me a moment to realise what was happening. And of course, what was happening was an anaphylactic shock. An extreme allergic reaction to nuts.
Not that he’d eaten nuts. It was Christmas time, and for the first time that year (and the last time ever), I had been tucking into some peanuts. And then I kissed him. And hospitalised him. And probably nearly killed him. If that sounds rather dramatic, put it down to the feeling of guilt I have carried ever since it happened.
There followed a period of appointments and testing to establish he had an extreme allergy to nuts. An epipen was issued. Care plans drawn up at nursery and school. Cupboards emptied of offending items. Labels checked. “This is going to be tough”, I remember thinking at the time, unaware that a whole world of shit was waiting just round the corner as it became increasingly obvious he was autistic. Somehow, a nut problem seemed insignificant in comparison.
Not that we weren’t/aren’t careful. It’s shocking how many food products contain nuts, may contain nuts or may contain traces of nuts. It quickly became second nature to check, and we went by the rule of thumb that, I’d he’d already eaten it, it was safe, even if it carried a nut disclaimer.
With the addition of autism came the deep-seated fear that he might one day get into a life endangering situation. What if a child offered him an m&m in the playground? Or if he lacked the communication skills to question something he was about to eat? Or if some bastard decided it would be funny to see what happened if he ate a nut, and my son gullibly let himself be bullied into it (I work in a school, I know how these things work). Fortunately, two things worked in B’s favour. Firstly, we taught him to ask, “Does it contain nuts?” as soon as he could speak, and he does so almost religiously. Secondly, he will only eat about three things anyway, and won’t try new foods. This typically autistic reluctance to eat is hardly good news, but does cut down the risks of further allergy attacks.
It turn’s out he doesn’t need the help of the school bully. His mum and I are perfectly capable of hospitalising him without any help, as we proved today. The offending item was a ‘Wonka’ bar, as in ‘Charlie and the Chocolate Factory’, which has been on heavy rotation in our house for the last week or so. B’s older brother (with help from B) has constantly pestered us to buy him a Wonka bar (they sell them in a nearby confectioners) and today I relented, making a special journey to pick up a couple of bars. They look just like they do in the film, and of course, each one contains a golden ticket. Unfortunately, this was a ticket straight into A&E.
I was driving when I got the call from my wife. B had eaten half a bar and was reacting badly, with sickness, shortness of breath and an entire coating of hives on his body. I told her to ring NHS direct, and by the time I’d got home, they were ordering us to administer the epipen while we waited for an ambulance.
If there’s anything more terrifying than standing over your five-year old son, preparing to stab him with an adrenalin shot, then I don’t want to know about it. This was a moment I had often thought of and always dreaded. You can’t fuck something like this up, can you? A half-hearted glancing blow and you’re in big trouble. If you’re going to do it, you’d better do it well. Forgive me, son…
One ambulance ride later, followed by two hours in A&E (culminating in a two minute consultation) and B came bounding happily back into his house. Panic over. He’s covered in the hives still, but out of danger. It turns out the Wonka bar ‘may contain traces of nuts’. We saw the warning, and we ignored the warning. My son almost paid a massive price for this. I believe the term is ‘parent fail’. And what did he do the moment he got home? He put on Charlie and the fucking Chocolate Factory!
So, that rare thing: a blog post on ‘Life with an Autistic Son’ that has nothing to do with autism. Except, of course it does, because when your child is autistic, everything is about autism. When we eventually sat down tonight and let the day’s drama sink in, we began to reflect on what had happened. In between the exhausted sighs of ‘oh god’ and ‘my poor precious angel’ from my wife, she made an observation about our little boy.
At no point today did my son’s autism become an issue. He coped remarkably well with a whole load of upset, change and disruption. He sat in a hot waiting room, for the best part of two hours, surrounding by wailing kids and only once did he crack and get upset. He coped with the noise and the smell and the heat amazingly well. He was unphased by a trip in an ambulance, with the doctor and paramedics prodding at him and attaching monitors. All this whilst dealing with the discomfort of an anaphylactic shock, not to mention the shock of your dad stabbing you in the leg.
Well done, son. My brave, beautiful, incredible son. I am so sorry for what happened today. I hope you will forgive me. I suspect that you will. And while you’re in the forgiving mood, perhaps you’ll also excuse the fact that your ‘Charlie and the Chocolate Factory’ dvd has mysteriously gone missing!