It truly doesn’t take very much to set me off, it would seem.
This time I was triggered whilst talking to my son’s foster father. I only wanted to check that he’d recieved my message about my new phone number, but he decided to drop a bombshell on me.
R has been suspended from the college that he’s been attending for less than three months. He had a meltdown and attacked two staff members. To make matters worse, he is now telling his foster family that he wants to “stay home” – which, for the sake of his education in daily living skills, we simply cannot allow.
This college caters specifically to autistic young adults and R is so incredibly strong and violent (which is why I’ve been terrified of him since he was three years old) that even they can’t cope with him. He’s being reinstated next Wednesday but I’m extremely concerned that he’ll make a connection between harming somebody and getting to stay at home – it would appear that he takes this as a reward rather than a punishment, rather like he did when he got to go for a swim if he acted out in school. I’ll need to bring this issue up with his social worker.
Anyway, I stewed on that all afternoon. The more I worried about it the more worked up my autistic mind became… I was obsessing over it like a dog with a bone.
The next thing I was truly aware of was being wheeled out of the house and into a waiting ambulance, with an oxygen mask over my face. I didn’t even feel the canula going in – which tells anybody who knows what I’m like about canulas just how out of it I was. Blood tests? I scare my phlebotomist because I sit there watching and cracking jokes. Injections? Here’s my arm; have at it.
Canulas, on the other hand? Be very very grateful that I’m in too much of a state to be able to kick you all the way to Skaro. I hate canulas with a deadly passion. Even now I can still feel the evil thing in my arm, in spite of the fact that it was removed last night.
I was drifting in and out, mostly unable to speak, on the journey to the hospital, so D was having to answer their questions. I could still hear though, and I heard this:
“Is there anything else we need to know about Gemma?”
“Yes. She has asthma and she’s autistic.”
“She has asthma and she’s an alcoholic. Okay.”
“No, she’s autistic!”
D was not allowed into triage with me, in spite of informing the paramedics that he is my carer and I would possibly panic if I came out of this and didn’t find him there – and I did come round and I did panic. I can’t say that the paramedic was all that good at reassuring me.
During a more lucid moment I was able to whisper that I’m not an alcoholic.
“Yes,” she said. “Your husband told us you are.”
“No; I’m not an alcoholic. I’m autistic.”
Three times I had to repeat myself until she finally got it, apologised and corrected her notes.
I’d had a few glasses of wine, yes, but seriously? If you can assume that somebody having a seizure must be an alcoholic simply because they’d been drinking beforehand then I might suggest that you need to find a new career path. How can you even mistake “autistic” for “alcoholic” when “autistic” only contains three syllables and “alcoholic” has four?
Yes, I notice little things like that when it comes to the English language. English has always been the main thing that I excel at: probably because I’m autistic. I’ll take my English pedant hat off now.
My body may have been weak as a result of all of this neurological activity, but I inherited my grandmother’s Welsh determination and stubborness. I probably should have realised that coming home was a mistake when I couldn’t even sign the release forms that I’d demanded after tearing off those sticky electrode things that weren’t hooked up to anything anyway, but I wasn’t staying overnight to be poked and prodded and forced to be still due to being hooked up to heart and blood pressure and oxygen monitors, so I pretended that I just couldn’t see without my glasses and asked if D could sign on my behalf. As soon as that canula was removed I was out of there and D was calling a taxi.
Today I am extremely wobbly and fuzzy headed, but grateful to be in my own familiar home, surrounded by familiar things and familiar smells, with D smiling at me.
I also realise that I am lucky to be alive, and for that I thank my gods.
That is ridiculous. Alcholic & autistic sound nothing like each other. They start with totally different sounds.
From experience, yes, the autistic children I have worked with prefer to be at home than in a noisy, over stimulating school
At least not all paramedics are so ignorant. I also appreciate that it was a busy night, but still…
My first thought was “ignorance”… not in a bad way (in the US the word has negative connotations). I think sometimes alcoholism is more prevalent and autism is less understood, and if there is a question about what term one heard, likely we think of the subject that we know more about. It’s always a good idea to have someone with you who KNOWS and can defend your situation. In this case, even having D along didn’t do a bit of good!
Let’s just say that I’ve had better experiences with paramedics. “Ignorance” is definitely the right word in this case
I’m boggled at anyone mishearing “autistic” as “alcoholic”. Unless they had impaired hearing , but even then the two words aren’t really that much alike.
I suspect that they saw the state I was in, noticed that I’d been drinking and assumed.
Personally I was brought up to never assume anything.
Assuming is particularly silly from a medical professional
Absolutely…
Yes that may well have been what happened. And it shouldn’t have happened Without D to speak for you, I dread to think of what might have been done to you.
Welcome home my friend!
They should never have refused to allow D to stay with me in triage – the last pair of paramedics fully understood that he needs to remain with me so that I don’t panic.
I’m sorry that you’re all having such a hard time with R. That must be very scary and hard to deal with. I hope that the social worker can help sort things out and that there’s a way to make it so he doesn’t see being home from being expelled/suspended as a reward.
Very scary seizures! It seems you’ve had those a lot. Is there any way that they can adjust your meds to help?
And…wow… Autistic doesn’t sound ANYTHING like alcoholic. Have you thought about filing a complaint? I’d be livid.
The older and stronger he gets the more I worry about his future. I want him to be in some sort of assisted living accommodation – not an institution because nobody can cope with him. That’s not living.
I’m having a review of my medication soon, and we’re going to ask my doctor if there are any precautions he can give us to use in home emergencies, rather than taking an ambulance away from someone who needs it more than I do.
Hi fellow blogger! I have nominated you for Blog Of The Year 2012. Congratulations! Please see my post for the rules.
(I hope you do not mind if I post this there.)
Oooh, back at ya – thank you!
Oh get well soon. What a tough time you are having. I hate canulas too.
Thank you. I hate them so much – especially as they have to bind the site so that I don’t seize and rip the vein apart
They are sou ouchy and spikey
I know what you mean about being able to feel them even though they have been taken out
Do be gentle on yourself – you have had a rough time (hugs)
I had some nasty aftershocks yesterday evening, but I think things are settling down again now
OK, Missus, take care of yourself! That’s an order. You can’t do anything to help R if you’re in a mess yourself.
Thank goodness for D being there to look after you even if it was a right cock-up with the paramedics and hospital.
Xxx
PS what size is your phone? I need to know so I can make a little purple and black number for it. X
I hate when they use canulas to deliver oxygen, that “blowing” into your nostrils is horrible! As for other ones, I actually like the feeling of whatever is in the drip being delivered into my body (I know I’m twisted)
Hope you’re feeling better!
And just out of interest, what meds do you take?
At the moment I’m taking Clonazepam and a relatively new drug called Vimpat. I’ve tried several over the years and this is the first time I’ve had no real side effects.
I’m still on a very low dose of Vimpat though, and am waiting for a review in which the Vimpat will either be increased or something new will be added.
What else have you tried? Sorry if I’m being nosy, I’m just always very interested to hear which meds people have tried. I always do a bit of research and see if I can maybe suggest it to my neuro
Tegretol made me a zombie and I had to stop taking it to do my job at the time. Keppra gave me the infamous “Kepprage” – psychotic episodes which made me extremely violent. Lyrica made me very fat and caused water retention and tendonitis into the bargain, and Topiramate exacerbated an eating disorder that I’ve been living with for the past 17 years – I’m still recovering.
If there’s a severe side effect I’ll generally end up with it. No, you’re not being at all nosy and I don’t mind answering your questions at all
You’ve really been through the mill! I tried Keppra, turned me into a zombie when I got to a dose that actually worked and clonazapam actually made things worse. I currently take sodium valproate and lamotrigine but it’s quite costly. I’ll speak to my neuro and see if I could possibly try one of these out. Thanks!
that all sounds highly unpleasant and frightening! thank god for D. But do you think maybe you should give up the drinking??? (just kidding, sorry – I’m glad you pulled through, Mrs Tribble!)
I’m working on cutting back on the wine; I can’t just all-out stop because that could lead to a fatal seizure. I’m not actually a dependant drinker according to my counsellor – I’ve just developed some bad habits over the years – but sudden withdrawal could still cause my body to go into shock.