Aaargh, sympathy.

It’s not maybe the unpalatable truth that I’ve been skirting around thinking about all weekend, but I have realised this morning that I suck at sympathy. I really really suck at it. Not in being sympathetic or giving out sympathy, I think I do pretty well at that. But receiving. I run a mile from receiving sympathy.

The trigger for this revelation?  I got a card in the post. It’s in reply to the card I sent last week when I was trying momentarily to “man” up to my problems and apologise to someone for letting them down and then going all radio silence (my usual modus oporandi).  I put a note in, this little gem, in the card.  So, of course I’m going to get a reply of some sort, unless the person I sent the card to is completely heartless, which they aren’t.

I don’t know what the card says though. I have opened it. I peeked in, upside down, from the back (yes, I am the kind of person who literally hides behind the sofa when Dr Who is on) and confirmed that it is from who I think it is. But I cannot bring myself to read it.

I’m trying to process why. Why is it so hard to hear someone being nice to me.  I keep coming back to how it reminds me of the thing I hated most about being pregnant. It was n’t the tiredness, or the uncomfortableness sleeping. I didn’t really get morning sickness (sorry), I didn’t mind, giving up alcohol, kicking my lame part time smoking habit to the touchline, or being the size of a house. I minded the intrusion. The fact that everyone knew I was pregnant (well, after a certain point) and thought that they could talk to me about this, like they knew me.  I wasn’t ashamed of them knowing I was pregnant, but that didn’t mean I wanted people I barely knew to discuss it with me. The fact that it took over other peoples view of me, reducing me to a mother-to-be and erasing all other parts of my personality. The fact that I was expected to be excited about it and want to talk about it at all times. Sheez, I mean I was excited, just not on a constant state of excitement for nine months solid, that would be exhausting and make me more than a bit unhinged.

So what do I think will be in this card that makes me so reluctant to read it? I’m pretty sure they’re not going to be horrible, so I’m not catastrophising this. But I feel raw and exposed just thinking about reading it. The feels man, I can’t cope with all the feels. It’s too much. Too much fuss as my mum would say. She hates people fussing over her. I’m thinking maybe this is a sensory overload, aspie, type thing going on here. Which is going to lead me down the sidetrack of where to place myself on the spectrum.

But I wonder if also this is part of the problem in talking about all the shit that is going on with other people. Because I have been spectacularly rubbish at talking about all the things I probably need to talk about with other people. I don’t really feel able to tell anyone because I can’t cope with how the conversation will go. Hence this blog. Sometimes I can talk to my husband, but there are complications with that, especially when he’s been ill too.

Which brings me to, I dunno, another side track, a branchline, a conclusion, an action, whatever. I have been thinking about trying to find a counsellor/therapist again. One in the goldilocks zone. Not too Lovely But Just Lets Me Talk About The First Thing On My Mind And This Feels Like There’s No Direction, like the one I paid for. And not too CBT By Numbers Not Listening To My Answers Cos She’s Already Decided What I Will Be Saying, like the one I got through the NHS Anxiety service. Trouble is, I have no idea how to find such a person. So I need to add it to my to do list. Which is in a state of disaray as I have been in full on life avoidance radio silence mode for a while and I’m not sure I can even go there right now.

So. Well.  I have brain dumped. And now I will read another chapter of a book (and that is a story for another day). And then I will sort the washing out. And maybe, while I do all that, my subconsious will work it all out for me.

Mystery pains

Whilst not a daily or probably even a weekly experience, it’s not uncommon for my son to get what we call Mystery Pains. They are a mystery, as as his parents, we can see no cause for them whatsoever. No redness, no lumps, no rashes, no symptoms discernible to us whatsoever. But they are definitely painful to him. And he seems to focus on them and make them worse, a bit like hyperventilating.

So, a couple of weeks ago we were woken by him coming into our bed practically screaming because of the unbearable itchiness that he felt that was so bad he clearly found it excruciatingly painful. We could see nothing.

It is really hard to know what to do at this point. When he was younger he suffered from small amounts of excema, and his sister still has flare ups, so we have a plethora of creams and lotions in the house designed to relieve itchy skin. Sometimes they work on Mystery Pains of an itch based type (which the Mystery Pains usually, but not invariably, are). However, often they provoke a reaction not dissimilar to putting vinegar on a cut (i.e. make things much worse). There seems to be no rhyme nor reason to which cream will do what when. So on that occasion we gave him antihistamine, because it is used for hayfever, insect bites and other such itchiness, so its appropriate, but mainly because it was the middle of the night and we know it also causes drowsiness.

This bedtime he had a flare up of Mystery Pain that had occurred earlier today and was described as a “sore bottom”. As it was the second incidence in a few hours, I thought there might be a physical underlying problem, so I gave him some Bepanthem, the magic cure all cream that I used when my daughter got bad nappy rash to apply himself.

Big mistake. It rendered him nearly hysterical with pain/discomfort and he could think of nothing else, which made it worse. I lay next to him, trying to talk calmly, to rub him, to encourage him to listen to the relaxation cd that was on and it was taking every ounce of my willpower not to get cross with him as he was so clearly winding himself up and making himself feel worse, but not deliberately so.

In the end I administered calpol, told him that it would take a few minutes to work and that if he was still in pain when the cd finished then he could come and find me. I went downstairs. My company did not seem to be helping him and I was afraid I was going to get cross if I stayed there much longer. I ate chocolate buttons and searched the internet for evidence/advice/insight of/about/for hyper sensitivity to pain in children with Autism Spectrum Conditions (the general opinion seems to be that people on the spectrum can be unaware of pain and not know they’re seriously ill (such as this post), but it is kind of mentioned that they can be feel sensory issues as pain too. I started writing this post. Then I got interrupted as he came downstairs.

Initially he seemed fine, then he remembered that he was in pain and started to verge on hysterical again. So I phoned a friend. For my sanity really (my husband is out so we can’t do our usual Tag Team parenting routing, where we swap over when we’re starting to get irritated). To help me not shout in frustration at him. And to distract him. We talked a bit, told her what we’d been doing in the past couple of weeks (lots), he seemed happy, then he remembered the pain (or maybe it came back, he did say it comes and goes, forgive me for being cynical but it’s half past 10 at night) and started looking like he was midlly hyperventilating again, so my friend suggested a heat pad, and I left him discussing if “because” was a suitable answer to a question (hint, he doesn’t think so) with her whilst I heated a wheat pad up and then I have given him antihistimine and tucked him back in bed with the heat pads and put the relaxation cd back on. Fingers crossed.

And it’s half past 10 and I haven’t even washed up after dinner.

I’m going to phone my friend again now and have a proper conversation. Assuming I don’t get interrupted again. If anyone has any experience of hypersensitivity to pain, itchiness, sensory issues, mystery pains, or knows of any resources or actual helpful techniques, I’d be interested to know. But mainly I’m putting this out there so that if someone else does a desperate search for similar reasons, that they might find out they’re not alone. Good luck to you. It will pass. Keep breathing.

 

 

stress?

I feel like I’m continually having the same conversations over and over again at the moment and it’s annoying/boring/frustrating.

I cannot properly answer how I am when asked without mentioning the tantrums and sleep issues that are dominating daily life and that in turn leads to a discussion of tricky behaviours the boy is exhibiting and a debate/discussion with whomever I happen to be talking to about whether he has an Autistic Spectrum Condition or not. Sometimes it’s me trying to explain to a friend that, despite my doubts, yes I feel this is a real possibility and we’re seeking an assessment whilst they explain to me that they don’t think he does have. Today it was a neighbour trying to convince me that in her opinion he almost certainly has High Functioning Autism/Aspergers and that I should get him assessed – with me desperately trying to get a word in edgeways to explain that I agree and I am trying and it’s not that darn simple. Sometime’s it’s just a sympathetic friend and we’re going over stuff for the umpteenth time. Sometimes it’s me going over stuff my head. When we get chance I’m discussing it with hubby.

I’m fed up with this. I’m fed up with the constant debate, the explaining, the discussion. I want to move on. I want to shift the focus back to him and what this behaviour is telling us about him and what we need to do about it.

Tantrums each evening for 5 days in a row, each at least half an hour. That’s pretty clear to me. That’s stress, surely. And hubby and I are pretty clear that it’s in some way school related because this is markedly worse in term time. And problems getting ready on school days are happening more and more. Today it was a sudden onset of sensory issues with clothes. Which is odd, as he’s normally fine on this. But not today, today something was itching on his neck and he went back upstairs, we had to turn his vest inside out and give him a fresh polo shirt. And then there were the trousers. Trousers he’s worn for ages are suddenly uncomfy, unwearable. It’s the button that adjusts the elastic that’s at fault. I fiddle with elastic. Still they’re declared unwearable. (I toy with the idea of giving him no option, but he’s so obviously upset and doing so will just cause a tantrum). A second pair (brown, not uniform grey) are offered. These apparently NEED a belt (he never normally wears them with a belt). Some faffing later, belt on, and they are declared uncomfy too – a similar button issue. I find a third pair, blue, no adjustable elastic so no internal button. This pair are a problem because they zip off into 3/4 length and the zips are uncomfy (all of these trousers have been worn many times with no issues previously being reported). I put emoliant cream on his legs. Still an issue. I can’t think what else to do, the only trousers left are pajama trousers and some brightly coloured ones definitely not suitable for school. I get him to have breakfast. Things calm down a little. Hubby delays going to work to help get everyone in a fit state to leave the house. Then the zip on his coat is an issue, it digs in, he NEEDS a scarf underneath. This time I put my foot down, no, there is no more time. On the brief walk to school he is subdued, seems upset. I help him into the classroom, take things out his bag for him, send him off to hang up his coat. I grab the teaching assistant as the teacher is busy and explain the problems and that his grey trousers are in his bag, should he want to change into them (or should they deem it necessary). He is not hanging up his coat. He is watching me instead as I’m talking to the TA. I go and get him to hang it up and leave him with the TA, explaining his stuff is not put away and I need to take his sister to her school now. I leave him, in the corridor, complaining about zips.

Yes, this is frustrating, but also I feel for him, I really do. Things were not right in his world this morning. But what to do?

What I want to do, is keep him at home for a couple of days, he can read books and help me with housework and calm down. But I can’t do that because he’s not ill, I’m not allowed. I could lie, and keep him at home, but then surely that will lead to him getting the idea that school is optional, that we can get out of it when we like. And yet, adults are allowed time off work with stress. And he is stressed, so clearly stressed, or am I just projecting my feelings onto him?

I can imagine a day when hubby has left the house and I’m going to really struggle to do the school run because he is too upset. It is definitely not an unconceivable event. At the moment he is still fairly small and light, but I have a bad back at the moment, if he decided not to go, I probably couldn’t make him. Not that he does refuse me, because he wants to do the right thing, but it may be he’s too involved in a tantrum to come. When/if that day comes, do I take him in late, keep him off for the morning, keep him off all day, what? And what do I do about little sister, who also needs to go to school?

Yesterday I contacted the organisation that supports parents that the pediatrician recommended. I had to explain details, it was hard, becuase I’m not sure exactly what they do so I don’t know what I’m asking for. But details were taken and they’re going to be passed to the relevant person who will contact me. Hopefully that will result in me having a better idea of the next step – which I’m thinking is talking to the SENCO. Anyway, it was mentioned in conversation that the waiting list for an ASC assesment, the one he’s being put on the one I was told was “long” is apparently TWO YEARS. I’m not sure I can wait that long. Even if I do wait, will he get a diagnosis? And what would a diagnosis change? Can’t we do something NOW?

So its back to going round in circles, again.