Wonder Boy is not OK
It’s been a hellish few days and now as things relax back into some sort of reframed normality I wonder how we ever got through it all. As always the wonderful circle of care kicked in, friends text offering help/listening ear, social workers were contacted, crisis packages discussed, Steve the ever patient care worker accepted my ‘dump and run’ approach without complaint, the best boyfriend in the world patiently listened to my little sobs and big rants down the phone. I recalibrated what WB needed in this time of crisis and reached out to anyone who would be remotely useful.
What is abundantly clear is that WB would not have been able to navigate any of this alone. The initial call to 111 meant that as WB is over 18, he had to do his own talking. The nurse on the end of the phone was nice but the questions were not very WB friendly.
“Some of these questions may not be relevant”
“Then why ask me?”
“Put your hand on your stomach, does it feel warm?”
“I don’t like people touching me.”
“That’s weird. Mum, she’s asking me to touch myself”
“What colour are your hands?”
In the end
“Is your Mum still there? Could I talk to her please?”
Much eye rolling this end, we play this game a lot. It’s good that they check.
The advice was to attend A&E immediately as this would be the quickest route to a psych assessment and this was very clearly what we needed. A&E is not a very autism friendly place as a rule so I contacted the out of hours social care service and got the emergency mental health team who also advised that we attend A&E immediately. The care and consideration we received in A&E was fabulous and I commend the staff who immediately tapped into the fact that WB was a. in considerable distress and b. was autistic. We sat amongst the Sunday morning football/rugby injuries and one guy who came in with an impressively large, blood stained eye patch. It was crowded, it was too bright, it smelled funny and it was noisy (if you need to go to A&E by the way, don’t bring half your bloody family with you. If you are well enough to be laughing your head off at your mates jokes, you’re probably well enough to go home and see a GP the next day – just saying). WB sat with his eyes closed until we were called in.
Saw a nice member of the mental health team, WB was unable to engage in much during this assessment. I think he was just exhausted to be honest. Had he arrived alone to A&E I doubt he would have been able to stay so probably would not have been seen. Mental health team felt that WB would be better off at home – I did too, but already my brain was whirring away at what deadlines I had to meet and what impact this would have on my work. I had, of course, informed WBs Dad but his work is very important man work [heavy sarcasm] so the burden of care falls to me. Mental health team would update us the next day, WB would be discussed in team meeting and a decision about what support he would need would be made. Perhaps a psychiatrist would see him.
WB was signed off sick. A concept which he did not understand at all, he just thought that if you were unwell then you could have time off work. You can, but only three days I explained, then a doctor has to say that you are not well. They sign a thing called a sick note, then your employer knows that you are not just lying about being poorly to get out of work. There are so many important life things that WB just doesn’t know. The GP was very kind and suggested we write a sick note for four weeks because ‘we need to be realistic’. I agreed, we were in unknown territory here, WB had never reported hearing voices before, he was in a bad way and I had no precedent as to how long recovery might take. Four weeks without him going to work was going to put a great strain on things at home though. We have the ever patient Steve three times a week and we just about manage, although we have no care package on a Tuesday afternoon and that is always a bit of a strain. Fridays are ok now as my 6-month contract has ended so have Fridays off again – more time, less money. We’re gonna need a new plan. Brain trying to figure out the implications of it all.
Two days compassionate/carer leave to put new plan in action. I’m good in an immediate crisis, I can evaluate a situation, determine what the best course of action is and get the ball rolling. After the immediate impact has hit, I’m not so good. There were tears of frustration, there was strain, anger and guilt. There was doubt that I could do this again. The weight of responsibility rested heavy as I watched my family resigned to the fact that WB had again stolen the limelight and their needs would be pushed further down my agenda. Then back to work, thank goodness for the respite that work offers.
The result from the Mental Health team meeting was that WB needed an urgent assessment by a psychiatrist – appointment Friday. Did they offer him anything to help him sleep? No that’s what Friday is for. WB doesn’t sleep because the voices he hears sound too loud, sitting with someone helps, watching TV helps a little, music doesn’t. The best boyfriend in the world often found me dozing in WBs room and gently guided me back to bed. I can endure many things, but without sleep things are not good.
Meeting with a psychiatrist on Friday went well. WB disclosed all sorts of things that I hadn’t understood and my heart went out to him. He would need medication and maybe some CBT in the future. He agreed to take meds and just wanted to ‘feel better’. Psychiatrist explained side effects of meds – I know she has to, but that just feeds into WBs hypochondria. He will have every side effect on the leaflet, I made a mental note to take the leaflet out of the packet. Psychiatrist sent an urgent prescription request to our GP and told us to give them a call when we got home. Some practices are really good at just accepting a psychiatrist request, some GPs like to see the patient before signing the script. She didn’t know which category our practice fell into. I phoned the GP in the afternoon and explained the situation. I explained the meds wouldn’t kick in for at least four weeks and therefore we needed to start them asap. Sorry, that won’t be ready until Monday. Can you ring back Monday afternoon please?
Monday afternoon, whilst answering emails and printing stuff – you know, like, doing my job – I’m the seventh caller in the queue. Finally got through but prescription not printed, would be ready next morning. I pointed out this was an ‘urgent’ request. There are lots of urgent prescriptions waiting to be signed, I was informed. Could I phone back after 5pm please it would be ready then. 5pm call – it’s not ready, phone tomorrow after 10.30am. Tuesday 10.30am – it’s been printed but not signed. Phone after 2pm.
“it’s been printed but not signed”
“yes I know this, I’m just being fobbed off now. This is an URGENT request, my son is in crisis.”
“We have found the prescription and will get it signed this afternoon. Can you call back at 5pm?”
“It’ll be ready at 5pm?”
“Right so if I come to the surgery after 5pm I can pick it up? This is an URGENT request from last Friday.”
“Hopefully it will be signed.”
FFS. Arrive at surgery at 5.30pm. Prescription for WB please. It’s not ready. Look, this is an urgent request for medication which my son desperately needs. Unfortunately, this surgery doesn’t recognise urgent requests – I have no words so I blink quite a lot. I must have been blinking with quite a hard stare because she said she would try and locate the prescription. Something about if it’s in doctors pigeonhole. I wasn’t leaving until I got it so was hoping for all our sakes that she found the bloody thing, I was armed with a sturdy brolly and a steely nerve so anything could happen.
I wondered how WB would handle this if it were up to him to navigate this himself. Impeccably polite, he would be fobbed off, I have no doubt about that.
Prescription located, the receptionist tracked down the duty doctor and shoved it under their nose until it was signed. When she gave me the prescription, I cried with relief. Long queue in Boots and we have the meds – hurrah. When explaining to WB that he had to take them with breakfast, he had to take them every day at about the same time, that they might give him an upset stomach and a bit of a headache, that he would feel worse for a couple of weeks then he should start feeling a bit better. Probably too much information in one go. WBs response – so, I take one at breakfast and then another one four hours later. NO, no don’t do that! One a day that’s all. You must not take more than one a day. The penny dropped that WBs previous experience of medication had been painkillers which you would take every four hours. Ah autism, you wily fox, that is an aspect I hadn’t considered before – damn you.
New plan – supervised med taking. The dog needs meds in the morning, we can do them at the same time. Just don’t get them the wrong way round, says WB. His confidence in my abilities seriously undermined, I decide that wine is the answer. For me, not him.