Archive | January, 2014

Pleasantly surprised

31 Jan

This week has not been great. Yesterday was particularly bad, with M having a massive rage (over a simple request to put on her socks) before school which meant once again we were late. The knock on effect of being substantially late can mean that the gym hall is in use and therefore M can not do her early PE that includes deep pressure activities to help her calm and focus. This  can set a negative spin on the whole day.

With the promise of unrestricted TV and a cop-out tea of fish fingers and smiley face potato shapes I coaxed her into the evening and her Beavers group. I stay as her helper, and mostly I do really enjoy it, and last night apart from some extra curricular running about and requests for big squeezes she did very well indeed. She often needs some big hugs to offset the sensory demands of 20 small loud children in a confined space – I understand this bit very well!

Back home I took a chance that less sleep would be countermanded by a cool down time in the form of a quick bath and I think it was the right option as she went to bed still without meltdown or even tantrum.

The middle of the night she came into bed with me and there was nothing I could do to make her move back out again. I gave up and dozed fitfully.

Now this is where I was pleasantly surprised.My regular 7.30 alarm didn’t go off (or if it did I have no recollection of turning it off). The first I knew of anything was my back-up alarm of 8 am, which leaves plenty of time. However, dd2 (L) was fast asleep in bed and the school bus for the academy leaves at 8.10. This is do-able in an emergency but L had an exam this morning and i did not want her rushing out the door like a banshee without a proper hot drink and something to eat. So, I told her to relax and do her thing while I got the other two ready. 

I got clothes for M and asked her nicely to please get dressed as we need to take L into town. 

She did what I asked with no problem at all.

Then I explained that they would have to have their Friday treat of chocolate spread on toast as a chocolate sandwich and eat it in the car, along with a packet of juice.

Again no problem “ok Mumma”

Suffice to say I got L to school in time for her exam and then turned the car swiftly round to head back to the village. By this time, I was fairly sure something would kick off in the day. After all, just turning the wrong way out of the house can cause a meltdown of epic proportions most days.

We got to school with about a minute to spare before the bell and they both hopped out and raced into the playground. I felt it only kind to forewarn the staff of the unexpected start to our day in case it caused problems for them. 

And I left.

End of the school day – no problems reported and a happy body slam from my girl at 2.30.

Afternoon passed without any raised voices or tantrums.

Then hubby’s train got firstly turned around then cancelled which meant that instead of him bringing ds1 home with him and collecting dd2 to take them to Scouts, that I would take L in and meet him there as otherwise they would both be very late. Another change – “kids, in the car, we’re taking your sister to Scouts. If you like you can have chips” (I am always open to using a bribe in an emergency)

“But it’s pizza night” “Yes I know, I can buy you a pizza instead then” 

“No, I think I’d quite like chips actually”

And now it’s quiet. Chips were consumed along with some healthier extras when we got back home, shower done, cuddles and a story and now she is in bed.

I am sitting with a cup of tea thinking how amazing it is that one day the tiniest weeniest thing imaginable can set off a day of untold misery for M, but yet the next day I literally heap her day with unplanned change and she can take it in her stride.

That’s autism for you.

Even More Support – a Mixed Blessing

28 Jan

I had been extra prepared for this term’s review meeting, with a long list of subjects I felt needed covering.

There were 7 professionals there, with another one apologising for absence. Hubby just couldn’t spare the time off work (so far to come it means over half a day) so I was pleased that the meeting was, as always, parent-friendly. 

Everyone – that is school and home – has noticed a downturn in M’s attitude and behaviour since the return to school after the Christmas break. We all decided that as December was horrendously stressful all round we would ignore it as it corrupts the “baseline” that we had been working to since September.  Part of the behavioural issues can be attributed to M’s big sister going back to uni after a break of a month and the change in routine that this causes. We had mistakenly thought that seeing as the first time was in September that M would be more understanding and adapt better, but the opposite was in fact true. Two days running we were so late to school that I sent her brother on ahead, and one day M arrived in her pyjamas as I had to carry her yelling threats all the way to the car and into school. It was felt that it was important for consistency that she does attend every day as it sends a clear message of routine.  We certainly don’t want to back to the days just over a year ago when she wasn’t in school at all, and now with the level of support she gets, it is easier to know (hope) that she will engage at some point in the day.

She has become a lot more vocal since going back, both in good and bad ways. She has been recognising her body’s need for deep pressure therapy and asking her 1 to 1 to use the various bits of equipment they have to provide this, including getting the 1 to 1 to use both her hands to tightly grip and squeeze M’s arms, from shoulder to wrist and back again. This squeeze technique is something M finds very helpful – at home I do her legs as well – but if this has happened the PSA always lets me know at the end of the day as I think she is worried about squeezing too hard or leaving marks. I do know for the most part M is a sensory seeker so she likes extremely deep pressure to feel any relief.

M’s self-esteem was a subject that I found hard to deal with, even though I had it on my list to speak about. Her language is so very negative, and we are used to her sobbing “just kill me now” “I want to die” “I’m useless, throw me in the bin” at times of stress. She is becoming more inventive in her choice of things that either we should do to her or that she says she will do to others. The most extreme a few days ago was screaming at her brother that she was going to slice his head off with a chainsaw. I think he had moved one of her cuddly toys to warrant that level of abuse. It is usually something very simple.

What is not so common in autism generally is the realisation some time later that she has behaved in an inappropriate manner. Not always, but more often than not of late, she is apparently utterly devastated by her behaviour and will apologise, although generally only to me. Sadly, the apology is usually accompanied by more requests to get rid of her as she is stupid and useless. It is becoming evident that she is aware of her widening differences from her peers, and this in turn is also piling on the stress.

So, as well as full time support in school, the OT who had been thinking of signing M off is now definitely not doing that, and will be coming into school in a few weeks time, and there has been a recommendation that clinical psychology be approached with a view to seeing if they can help. I have felt for a while that M is quite aware she has autism, but unlike shortly after her diagnosis when she seemed relieved to know that there were reasons for her feeling different, she has been actively trying to pretend she is the same as everyone else, which is costing her too much effort, and overwhelming her with the exhaustion of the pretence. The idea behind more help is that hopefully she can begin to accept that she is, to quote one of my favourite autism sayings, “Not broken, not damaged, but different” and to learn to embrace what she needs in order to function in the neuro-typical world, whether it be her ear defenders, time on her own, or to curl up in a ball in her fleece blanket in her den-under-the-desk as “everything is wrong today”. She has even rearranged her den (previously just for retiring to in times of extreme overload) so that the table that forms the den has become her work-station, with a chair moved in behind the screen (interestingly she scoured the classrooms till she found the exact chair that was originally there this time last year) and all her work, pens, tools etc moved onto the table top. Her PSA had mentioned this development so after the meeting I went to have a look with the OT. My first thought was “someone has built themselves a wee fortress” and the OT said “safety, she’s going for safety.” So, even as she is actively trying to engage in the mainstream activities as much as possible and to lessen the gap between herself and her peers, somewhere deep inside she knows she can’t keep up the act and will need to barricade herself in. I am delighted at her ability to recognise this on a subconscious level, but there is a huge sadness that has overwhelmed me this evening that she is struggling so very badly.

The prospect of some respite was mentioned and one of the main movers and shakers in social work is hoping to find a support worker so that as a family we can get a wee bit of “us time” every so often. I know how stretched these resources are, but without any family around, and with all/most of our friends being in the same boat, we literally have no way of respite without involving an outside agency. Social work are also trying to ensure that B, wee brother, is supported too as he has really struggled with being so often in firing line of M’s outbursts and it is beginning to show again in his attitude at school.

So, a very involved meeting with a lot of support and understanding from the professionals, and I sense a real will to help my wee girl, for which I am enormously grateful. I am just very down right now thinking about what mountains she has to climb every day just to achieve what most of us take for granted, getting dressed, eating, going to school, learning, playtime, lunchtime, and then the whole after school routine of home-time, homework (not often!) socialising (or not) and being part of a large family and the sensory demands on every part of her, and then, horror or horrors, needing help in the form of medication because even though she is exhausted her brain won’t switch off and let her sleep. She’s a wee hero every day. I hope one day she realises this too.

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Silent Sunday

26 Jan

Silent Sunday

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

Bleurgh (The Poorly Post)

13 Jan

I might, if I’m feeling up to it, write about the events over Christmas and New Year  in a while, but today is about me.

I’ve had some slight dizzy spells on and off for a few days and brushed them off as not important as frankly I didn’t have time to be ill.

Yesterday however, I had trouble getting out of bed. Like, real trouble. The room would not stay still when I tried to sit up. Lucky for me I have a hubby who got the kids fed and dressed while I attempted to make the transition to sitting up enough to swallow a cup of tea.

I finally made it downstairs about 10.45 and did very little. I did supervise a wash load into the machine, and weakly look in the direction of the vegetables for the Sunday roast, but it was evident I wasn’t going to be doing much.

The day ambled along in a state of not-much-happening-let’s-keep-the-little-ones-amused until our late Sunday dinner about 3 o’clock. I was about halfway through when the vision in my left eye went very peculiar – I can only liken it to being like viewing through a kaleidoscope – and the dizziness increased. Had it not been for the dizziness I think I would have said it was like the aura I sometimes get before a migraine, but this time I had “extras”.

I decided to ignore it, but of course I’d reckoned without one husband and three vocal teenagers. My dinner went cold as I rang NHS 24 for some advice. I was fully expecting to be told to take 2 paracetamol and “man up” so I was staggered that the nurse sounded concerned enough for me to be asked to go along to the local out of hours service. Hubby put the eldest in charge and drove me away. By this point all I actually wanted to do was to go to bed – I was feeling very sleepy – but we arrived and were seen by a lovely doctor almost immediately.

No wonder I had been feeling cold all day, I had a temperature (a “low grade fever”), labyrinthitis and the beginnings of a migraine. So my “sparkles” were the aura. Turns out that the stress of the past two weeks has probably contributed to the migraine building and I needed to “go straight home and to bed”. I didn’t need telling twice. The doctor gave me some pills to help counteract the dizziness and mild nausea, and hubby drove me home. I took some paracetamol as I had the start of a headache and crashed out upstairs. I missed the afternoon, tea, and the whole bedtime routine for the little ones, and finally woke about 10 pm. My head seemed clear which was wonderful, so I staggered down for some tea and toast (invalid food of course) and went back to bed after a while on the sofa.

I didn’t expect to sleep at night but I must have been exhausted as I don’t remember much about it. I am wobbly this morning but I managed the school run, and have spent the morning doing very little. I think I need another of the horrible anti-dizziness pills now (horrid as they taste of artificial sweet stuff) and I might be press-ganging dd1 into making tea tonight.

As for the migraine that wasn’t – I have heard that some people can get the aura without succumbing to the headache part. If that what happened to me then I’ll gladly embrace it. Pretty sparkles are not nearly so scary if you know why they happen. In fact, if the gods see fit to send me any more, I’d like to put in a request for one without all the horrendous pain and 3 day hangover please! 

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Silent Sunday

5 Jan

Silent Sunday

Partying without Tears

1 Jan

M asked, no, begged, to be allowed to stay up for the Hogmanay revelry last night. So did her brother. We decided that if they both behaved themselves during the day and weren’t showing any signs of hyper-tired-silliness that we agreed.

M got tested in her resolve to behave well as we dragged her along for the weekly food shop but she had Biggest Sister with her so they mostly did their own thing (for that read M getting spoiled with cake decorating goodies and a new magazine) while hubby and I did the hard slog. She was really good. I thought the shops would be heaving but in fact they weren’t particularly busy; we got there after lunch and a lot of the shelves were already bare! From a sensory point of view it was the perfect time to shop.

The evening went by in a blur – we settled down to watch a dvd – I’d bought The Croods specially for last night – and after it was over we had time for a nice drink (non-alcoholic as one of us was on taxi duty for dd1) and then got ready for the celebrations.

Our village has a wee “torch-lit” parade that starts at the war memorial with a hymn and a quick prayer, then heads down the Main Street to near the harbour at the other end, where we congregate and wait for midnight, when there is a fireworks display from the harbour wall. The torches this year have gone slightly more high tech (or maybe it’s H&S as they used to be tea lights in glass jars) but they now hand out rather impressive glow sticks. 

As we headed down the street behind two pipers (usually we have one but this year we were spoilt) the glow sticks magically appeared to turn into light sabres *sigh* but we kept the various children under vague control and made the other end of the walk without incident.

I had been a bit concerned about the fireworks as M always says she likes them but she’s been more unhappy than happy at every Bonfire Night event we’ve ever been to. Turns out it must be the excessive noise and crowds that upset her; she was in her element last night, staring up at the sky in wonder and delight. “So pretty” I heard her say to no-one in particular at one point.

After all the hugs and kisses were exchanged, and M and B had had a good run about with a wee school friend, most of us headed to the Village Hall for soup and hot sausage rolls. One of the local ladies saw the three children were in danger of getting themselves into mischief and promptly gave them each a small tray of sausage rolls to hand around. The boys were immediately off with the intent of emptying their tray before the other, but M needed me to tell her to approach groups of people, smile and ask if they would like one. That’s when I could see her autistic nature, she couldn’t just “see” what to do in this social situation. I was so proud of her, she actually did exactly what I said, and of course, small children are always looked upon kindly when doing such tasks, so everyone made it very easy for her by thanking her and taking a sausage roll (or three). I kept a gentle eye on her, and guided her to put the tray on a table when she’d done the rounds a couple of times, then she ate a couple herself (she wouldn’t try the soup) and carried on horsing around with the glow sticks and the boys.

We didn’t stay long, and the hall is almost next door to our house so it was a matter of moments before they were both changed into pyjamas and snuggled up on the sofa for a little bit of “down time” before bed. There is no point trying to put M to bed without giving her melatonin about half an hour to start working, so it was all nicely relaxed with Jools Holland’s music programme on and a wee drink for me. Then dd1 rang to say she’d been invited to crash over at her friends, and that relaxed us even more as hubby was no longer on taxi duty.

Just as Jools Holland was finished I noticed B had slumped and bless him he was almost totally asleep. We dragged him gently upstairs, and took a rather sleepy and protesting M up too, where within seconds both of them were out for the count.

I’m typing this at 2 pm and they are both showered, fed and quietly watching some TV. I’m not sure if they are too tired to argue with each other but they’ve been delightful so far. I am quite happy to let them stay up next Hogmanay after the success of this one.

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