Tag Archives: meltdowns

It’s Been Non-Stop (As Always)

1 May

No, I’ve not fallen off the edge of the planet; it just seems that way.

It’s been absolutely non stop since last summer, when the children went back to school and Teen Boy went off to college.

Small Girl’s return to school went badly, to say the least. I could not understand what had upset her so badly, but every afternoon and evening, and then the mornings, started to go back to what I thought of as the Bad Old Days, before she had full time support.

She was unable to verbalise anything specific, and I decided it must be “just” a bad transition after the good summer we’d had.

Oh no it wasn’t! I found out after almost three weeks – when we weren’t talking specifically about school – that her PSA (Pupil Support Asst) had been taken away from her! With no notice, and nothing home, not even an email to inform me of this massive change.

The effect on Small Girl was nothing short of catastrophic. Her ability to function in the mainstream environment depended entirely on having her own adapted curriculum and dedicated support from this lovely woman who could read her moods better than anyone outside of the family.

Obviously, I raised merry hell at the school. The poor head apologised that we hadn’t been told (What? You honestly expected a child who you know becomes non verbal under stress to pop out this wee gem at home time?) and then we got the bad news that the LEA had done this across the entire Highland Region. It wasn’t the decision of the school, and in fact they couldn’t cope, i.e. expect to fulfill basic requirements with the additional support they currently had. I said, well no, of course you can’t because my daughter’s full time support has suddenly been axed. Not allowing for anyone else, this was a serious issue.

The biggest problem we had with this withdrawal of support was the very real risk to SG’s physical safety; put simply, if she’s very upset she’ll do a runner. Highland schools are not on lock-down like a lot of English ones seem to be, so it’s the work of seconds to be out the doors and over the fence, straight onto the main road, down the hill, and – God forbid – into the sea (which is a huge draw for a lot of autistic children , SG being no exception.

So, we did the only sensible thing; we kept her at home. I could have decided to take the education department to a tribunal for endangering the life of an autistic child (among other failures) but in the end I thought it simply wasn’t worth the energy it would cost me, and the detrimental effect it would have on her, being effectively in limbo while we fought on. I wrote a letter requesting permission to de-register her from school instead.

There was a nasty moment when we got threatened by some suit at the council, so I promptly sent him a sharply worded email setting out in detail exactly how they were breaking any number of laws by their persistent failure to provide a safe and nurturing environment for my disabled child, and that if they wanted to argue, they could bring it on. I said she was being kept at home as being in school was detrimental to her mental and physical well-being.

I got the permission to de-register a lot faster than the maximum six weeks – what a surprise!

Anyway, since then we’ve been de-schooling, which mostly consists of a lot of cuddles, stories and play doh, with visits to the library and the parks. Small Girl has also done a fair bit of what I’d term “school work” in various work books, and on line, but she’s still scarred from the build up of years of sensory overload, so we’re taking it slowly.

And what of Small Boy? Well, he’s had a tempestuous year so far, I think it’s fair to say. His anxiety is still off-the-charts bad, and my state of alertness to the possibility of a meltdown (and omg they are spectacular in their violence and length) puts me on a level (or so it feels) of a bomb disposal cat who’s used up eight lives. My sleep is fractured as I never seem to be able to switch off, I get a ton of headaches, and I am often grumpy AF, but as we head towards the last ten weeks of his school life, ricocheting from day to day, and his insistence that he can manage the four hours a week he is timetabled for, I am excited to know that from the end of June he will be finished with primary school, and from then on, the education of both my youngest will no longer be anything to do with the education authority. And I’m looking forward to learning all manner of new and interesting things alongside these two amazing kids that we won’t allow the school system to break.

Mental health is often precarious in autistic people, whatever their age, and frankly no wonder. The pressure to conform to neurotypical standards is high, and even some of the special schools just don’t “get” it. They might be able to mask, but eventually the mask will slip, and the fallout is bad, often resulting in self harm, low self esteem and more. If Scotland refuses to accept that the ethos of mainstream for all is damaging, then I can’t use my children as a weapon to prove how badly wrong the system is, not if I want them to stand a chance of being mentally sound and proud to be autistically authentic.

I’m no saint, and I often get it wrong BUT unlike teachers who spend so much of their time keeping control rather than imparting knowledge, and then, in Small Girl’s words “making us sit down and do maths” I can hopefully make them comfortable in their own skins as they branch out into learning what enthuses them. Am I scared? Yup, you betcha. Do I think I can do this? Yes I do. Because what I want for them is not a string of letters after their names (I mean, that would be cool) but rather for them to have enough confidence to face the future being proud of what they’ve achieved. If they are polite, and kind, and know how to cook meals and load the washing machine, and sing along to Korean pop music, as well as add up and read, then I’ll consider they’re doing all right.

So that’s us right now. In limbo with Small Boy and his final few weeks of school, and sort-of still de-schooling with madam. But we’re all still here, and the good days outnumber the bad.

bikes

Here they are last weekend, enjoying being outside for once. At the risk of jinxing it, we finally have some half-decent weather.

 

The Good and the Bad

16 Jan

It’s been a tough few months in the Justgoodenough household, and – frankly speaking – nothing seemed to be good enough.

Both the young ones suffered very badly from the combined effects of a new (thankfully permanent) class teacher and the organised chaos that is the term leading up to the Christmas holidays.

Even with the school routine checked out on the daily visual chart, and any changes discussed, with loads of reassurance from me and their dad, Small Boy and Small Girl were both anxious, cranky and sometimes downright out of control, both before and after school.

Small Boy in particular had several (and I don’t want to think back and count them up as the total would be really depressing!) occasions when I had to act tough and physically dress him and then half drag him into school. We work to always give them a choice in as much as we can, so they both of them feel they have an element of control in their lives, which to be fair, are mostly managed by adults, and rightly so as they are children. Examples are allowing them to choose between toast and bagels, hot and cold cereals, jeans or joggers. Not exciting stuff, but then when you are dealing with a child who point blank refuses to see anything good in the entire school week with the exception of the end of class bell on a Friday afternoon, there isn’t much to work with.

Still, I did as much as I could, and knowing Small Boy and his indefatigable logic, I knew I had to get him into school every day, as if I had wavered just once, and he’d not been actually unwell, he wouldn’t have gone back in again. The worst day was the Monday before Christmas, when I had to call the school and get the head teacher involved. Small Boy was barely dressed, had refused to eat or drink, and then just as I thought he might be calming down, he shot past me and tried to race out of the door.

It was freezing cold, he was only wearing thin trousers and a polo shirt, and his trainers were unlaced. How I moved quickly enough to catch him I shall never know, but I’m pleased I did as I dread to think of how long he might have been missing for.

The head drove down and I bundled him into her car so we could physically get him the very short distance from home into the school building. From there he shot into the classroom – after I blocked the exit – and hid under his desk, rolled into a ball. The TA that he shares with Small Girl and another child was there to keep an eye on him, and the head stayed with him while he calmed down. I know they offered him a banana and a drink when he was able to sit at the desk rather than under it (I came prepared for the lack of breakfast). He didn’t join the other children for the rest of the day, but did do some work at his separate desk.

I felt terrible about pushing him, but I knew I didn’t have a choice. What we hadn’t realised until this year is how badly any kind of change affects him, and it’s getting progressively worse. We don’t know if hormones are involved – he’s nearer 11 than 10 – or whether it’s “one of those things” but we do know that even with every support the school had put into place, it was nowhere near enough.

The Christmas break came a day early as their TA was sick on the last day and they weren’t able to find a replacement. There were too many variables in the day, including an end of term service in the neighbouring abbey, that meant it wouldn’t have been safe to send either of them, so with the head’s agreement I declared a pyjama day and kissed goodbye to my planned six hour’s wrapping marathon.

Behaviour improved a little, but then as soon as the last Christmas present had been unwrapped and the usual roast lunch was dished up, I noticed a profound difference. I won’t say that everything has been perfect since then, but I think knowing there are no more big surprises planned has been a huge relief.

I was dreading them going back to school but in fact it’s been remarkably calm. I did give Small Boy a small chat about maybe seeing if he could try hard to understand that nothing has been “normal” for his teacher since she started as she came right into the whole Christmas plans chaos, and he agreed to try. For school’s part, I insisted that Small Boy be given the choice to work at his separate desk for any lesson, as long as he proved their trust in him by actually working and not messing about or dreaming. Not that he has done either of those things, but it has to be a two-way street. He can hear the class from his desk, just not see them as he is separated by a row of bookshelves. The teacher or TA checks on him regularly, and he has been much happier.

On Wednesday he came home with a sticker on his jumper. Turns out it was for the best child in the class that day. Cue me trying to not cry with pride. Then Thursday he turned up with another sticker, for a repeat performance.

And yesterday? He came out of school with this:

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Small Girl, not to be outdone, came out adorned with a fantastic sticker for being the best in class that day.

Not ashamed to admit I teared up a bit. OK, a lot.

Sadly, the effort of having been so amazing all week was too much for Small Boy who had a (mercifully brief) violent meltdown about an hour after getting home, triggered by something very small. I kept him safe while he raged and then held him until he was calm enough to know where he was. He was quiet after that, and a little subdued, but still able to eat his tea and go to Scouts, more proof that he is handling the new routine pretty well.

So, the good and the bad. It’s a constant balancing act trying to ensure I push for my children to have the adaptations to the school day that allows them to attend, but at the same time not letting them think they can just refuse to go in.

However, I think one thing is clear. Neither of my children can cope with the Christmas term. I have review meetings for both of them next week and top of my agenda will be a concrete plan for November and December of this year. I cannot allow either of them to go through the hell that it plainly is. I dread having to remove them from school, but if that is what it takes to ensure their well-being then I will, but I will be pushing for tutoring too.

It could be a busy year!

 

Just send gin

18 Jul

Preferably Bombay Sapphire but I’m about 3 miles past the fussy stage.

You might guess, and rightly so, that the behaviours have been continuing. And boy have they!

It started well this morning – M decided to get up very early (i.e. she crept in for a cuddle then snuck back to her bed and then sneakily crept downstairs) and make her own breakfast. This could have been a disaster as she has to stand on a stool to reach the toaster but she made a decent job of toast and butter, and remembered to fetch herself a drink (I am SO glad my youngest two drink water by default).

I was lulled into a false sense of calm by this show of independence and was therefore not prepared for the onslaught of tantrums and meltdowns that followed. Luckily I had an appointment several miles away and E, my eldest, was earmarked to babysit, so with instructions that M and her brother were not to have TV, DVDs or the computer (seriously way too much screen time so far this week) I left, confidently assuming they would be racing around the garden in the gorgeous sunshine for ages.

How wrong I was. I got home to find that E had fed them their lunch – which appears to have been the only OK part of the whole day – and had given up on trying to get them outside. I thought “Huh, she just needs to be a bit more authoritative, I’ll get them out playing something in no time.” Yeah, well I nearly gave up too! Between the Olympic standard whining of B, and M’s absolute point blank refusal to engage with anything I said at all, I was losing the will to live. In the end I resorted to what I think of as my Army Voice (think sergeant major from a nightmare) and literally ordered them out by blocking the way back in.

It is astounding how many times a child can dream up an excuse to come back inside. I won’t list them all as some of you might want to sleep in the next year, but suffice to say the only way to keep them outside was for me to join them.

The good news is the lawn is now mowed and looks half decent. Extra good news is that the kids were outside for a total of about 2 1/2 hours – some much needed vitamin D in this oft dark corner of the planet. Astonishing news is that I managed to persuade M to help rake up some of the grass, and a very good job she did too, even though somehow *cough* the rake got broken off the handle. I was too hot and tired to investigate this breakage and am giving her the benefit of the doubt. Here’s a wee picture of her using the plastic rake part that still worked well enough to clear up the very last bit of grass.

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The latter part of the day went slightly better, especially as I gave M her usual Friday night cheese pizza for tea. Melatonin was my friend again (seriously no idea how I am going to be brave enough to give her a week off at some point!) and they are both asleep.

Please let tomorrow be a better day!

Not going Well

21 Jan

The tantrum train has been stopping at our house this week.

I know they are tantrums and not full-blown meltdowns, but it scarcely matters as M is unable to function properly either way.

Her sister has gone back to university, and with it has come the inability to accept the change in routine and to family life. It’s not even as if M spends hours with E when she is home, but the fact that is here makes it all right in M’s World. 

It was pretty awful back in September when E went away for the first time, but somehow I expected it to be easier this time. How wrong I was! M’s PSA*, the rather wonderful Mrs T, had a suggestion this afternoon that perhaps it’s worse precisely because M knows how she felt in September so the dread of the emotions plus the emotions themselves have tipped her over the edge. Either way, there is very little I can do for my wee girl except keep calm, keep the routine, and keep the reassurance that I am still here for her.

After Monday when M went to school half an hour late and in her pyjamas, and today when she was 15 minutes late and mercifully dressed, it would be nice to think that tomorrow we will achieve fully clothed and on time. But, if we don’t then we don’t – her autism is playing all the parts in the story of her life right now, and I have to accept that that role is bigger than everything else at the moment.

 

*Pupil Support Assistant

Just so Tired

17 Sep

This is a whinge.  So you can’t say you weren’t warned.

I am sick of playing detective every single day since the schools went back. I KNOW it’s not M’s fault she is autistic, and I don’t want to change her, I really don’t – if she was changed she wouldn’t be her – BUT I am so bloody tired of asking the same question in a dozen ways in the hope she can respond to one of them, I am tired of thinking of ever more ridiculous reasons for a refusal or tantrum (and it’s a good idea to assume the ridiculous as it might be to me but not to M) and I am just plain tired of always without fail being the one person who has to justify M’s sensory world to everyone else.

And by “everyone else” I am including family, who have taken it upon themselves this week to tell me I am spoiling M and just playing into her hands. I beg to differ. If she ignores you it is mostly because she has no filters. This was explained by a paediatrician and actually I think I already half knew; she sees, hears, feels and smells everything all the time, and as she is young she hasn’t yet learned how to filter, which obviously leads to being totally overwhelmed and meltdowns. Or sometimes shutdowns. Instead of screaming and blowing her top she zones everything out. I have tried to explain that if she doesn’t respond and has a blank look in her eyes then she’s “gone away” for a bit and is not being naughty and ignoring them, but for some reason what is patently obvious to me is not to others.

So, I am tired, Some days I would like nothing better than for everyone except M and me to just bugger off out of it and leave the pair of us, snuggled up in some soft fleecy blanket to drift through a few hours where no-one has to explain anything to anyone else, or justify anything.

And then I wonder just how tired M must be. She lives with this x 100 every single minute of her life. No wonder my poor girl has meltdowns.

Back on Track?

15 May

Well it’s Wednesday morning and I am having my coffee as a pleasant treat and not as a desperate calming measure after another stress-ridden school morning.

M’s PSA (Pupil support assistant) returned to school yesterday after 3 days off. I imagine that it was pre-booked leave before she accepted the job, and I have no problem with that, although I know in general teaching staff don’t take time off during term time. And I am also very grateful that it was a planned absence rather than illness so that we could prepare M for the change.

The temporary PSA was lovely. She has lots of experience, was very approachable, and knew not to let M take the mickey. All 3 days apparently went well, and M did some great work during school hours. 

However, M obviously did not appreciate the change in routine. The screaming, violence and meltdowns over what appeared to be nothings have been much in evidence. Until yesterday afternoon. After home time, a snack and a change of clothes she was quite happy to be taken off to dancing practice by one of my friends who had volunteered (a total change but one I had a) cleared with M and b) made a visual for) and then she ate her dinner and even coped brilliantly with her weekly hair wash at bath time without any fallout.

So, we have to assume that the change of PSA was something she just could not seem to process and deal with. This time at least. Maybe if it happens again she might be less anxious as she will fully understand that it is temporary. But for today my wee girl is happily chuffing along, back on track.

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Blatant use of a train analogy! Photo found on http://www.justyou.co.uk