Archive | August, 2013

A Very Long 24 Hours

30 Aug

This was M at 5.30 yesterday evening:

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Happy and excited about the Beavers trip on the ferry. And so it continued. We spent the outward journey on the top deck, gazing out at all the sights and being seriously hyper with her wee friends, most of whom she hasn’t seen for about eight weeks.

On the other side there was time for some play on the small beach (M does like soft sand for running her hands through) before the first surprise of the evening – pizza! Our Leader had pre-arranged this tasty treat and as you can see it was well received:

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Then we split into our three groups and set off on surprise no 2, a treasure hunt. I almost always stay with M’s group as this keeps her anxieties to a minimum. The kids were a happy bunch racing from place to place and making sure I ticked off every “treasure” as they spotted it. One or two were tricky but we persevered and completed the list. 

An hour passed very quickly and all too soon we were back on the ferry.  And then it started to go wrong. This time we were on the lower deck – all open plan as there were no cars on board – but apparently much too noisy for my wee girl. I hadn’t even thought about taking her ear defenders with me as I knew we would be outside. I could possibly have taken her back upstairs (and now with hindsight I wish I had) but I was trying to help keep 18 other hyper and slightly tired children under control and felt I shouldn’t “sneak off”. Huh, next time, bugger it I’m off.

Anyhow, you can probably guess the rest. M tried running off and hiding, she wouldn’t join in with a group photo and she turned into this:

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Such a sad contrast from my happy bouncy girl an hour and a half before. Looking at this last picture makes me feel so bad for her. I needed to have thought through what could happen and prevented it. Maybe she would have still been a bit tired but my lack of thought caused her a massive sensory overload.

Back home, melatonin and cuddles got her to sleep, but at 3am the overload tipped her over the edge and there BANG was the payback. Poor wee thing spent the remainder of the night tossing and turning whilst trying to remove my kidneys with her toes and yakking away a whole pile of drivel/thoughts/worries that I struggled to make sense of.

Consequently someone was not very pleasant this morning. Her co-ordination had taken a holiday as well, and I knew that nothing would help except stepping back and leaving her alone. I mentally made a note to call the school if B was going to be late, as I knew without any doubt that rushing would not be an option.

The tactic of simply refusing to get hassled is a good one, but very difficult to implement. However, I was proud of myself for keeping calm even though zombified from lack of sleep and we made it to school just as the bell rang. I popped inside to warn the staff in case a meltdown ensued and made my escape.

After school today was horrific. M was hysterical and I had to be very stern about getting her upstairs and onto her bed where I covered her with her weighted blanket and insisted she stay there. She was sobbing but I could see that she was past needing even cuddles at this point. After 20 minutes it was silent and I even thought she might be asleep so I crept back, She was awake, and very still, and put out her arms for a hug. My girl was back. We had a lovely cuddle and I explained that she hadn’t been naughty but she needed quiet time alone. Then she asked me to go so she could stay there!!

Another 20 minutes and she was ready to rejoin us. She went from the bed to the sofa and curled up watching TV until tea, then very luckily my brother had reached a point in the bathroom build where he said I could use the new bath as long as I made certain there were no splashes (tiles un-grouted and no sealant yet). The new bath is absolutely massive and a soak was just what M needed. She is a water baby and will take any chance she can to bath.

I left a warm cuddly bundle tucked up tonight and I think she might well stay there all night. She’s exhausted and I know I am! How parents of children who only sleep 3 or 4 hours a night manage to stay sane I shall never know. But then that was me a year or so ago. How quickly I forget! 

Working it through

27 Aug

So, we’ve struggled through six days of the new term.

It’s been a long six days. Until yesterday I was serenaded, and yes that is sarcasm, by yells cries and screaming from 7.30 am until I dropped her off just before 9 when magically all would be silent as the actuality of school loomed.

However, there had been no after-school meltdowns, so I was quietly confident that the new term had started well. M hasn’t really told me anything about any of the last six days, but neither has she ranted and raved. Until today.

I had no idea what caused the upset this afternoon but one very grouchy wee girl came home, and found fault with every single thing. I swear I was even breathing the wrong way. In a rare calm moment we had a cuddle and I asked if anything had upset her at school. She said no.

OK then, what next? I had made sure she had a snack and a big drink, as I find hunger or thirst amplifies any sensory behaviour. And then I left her to it as my eldest boy was returning to school this evening and I wanted to be sure everything was ready for the taxi.

I hate saying goodbye to my boy, and it is never easy after the long summer break; today I had tears in my eyes. M came to give me a hug. “He’ll be back on Friday Mumma, that’s not long, don’t be sad”. She was patting my back as she said this, just like I have done to her and her siblings on numerous occasions. So sweet.

Then she stated that she needed to go for a walk. “On the beach please”. I decided that dinner was fine as it was in the oven so off we went. No one else wanted to come so we headed off together.

M found a piece of slate and insisted on carrying it around with her. She wrote her name in the sand with it, made up stories about it, and lovingly washed it in the sea a few times. She does get quite attached to inanimate objects, especially stones, so a slate was a variation on a theme.

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Towards the rock pools we found 2 sets of new steps leading up from the beach to the caravan park; I say new but I haven’t been up that end of the beach all summer so they might have been there a while. M decided we would “have an adventure” so up we went.

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Apparently we were fighting our way through lions and tigers in a jungle until we got to the top. The slate had (I think) become a weapon at this point.

We headed along the beach path for a while back towards the house until M got concerned about the amount of tall grasses tickling her legs and we headed home via the caravan park and the road.

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On the way back I thanked her for comforting me when I was upset earlier by R leaving. She answered that she used to get upset but “now I keep it in here” (pointing at her chest). I asked why. “So’s I can be happy, I don’t like being sad. And you shouldn’t be sad either Mumma, R is coming back and then you’ll see him.”

And then I got it. I am almost certain that there was nothing wrong at school today. She was upset because she knew R was leaving. And she didn’t cling onto his legs and wail and scream like she has done in the past – no, she “kept it inside” BUT she was still upset enough for the upset to seep out of her before he left.  I thought it was the walk in the fresh air that had settled her but now I think it was the act of waving him off; it became an absolute and not an abstract that was too difficult to process.  And she was, I think, trying to tell me that she was processing it all, working through her emotions.

But I wasn’t listening well enough. Not at first anyway.

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Silent Sunday

25 Aug

Silent Sunday

A VERY big deal

21 Aug

Anyone who doesn’t have a kid with autism or sensory issues might not get this but it’s OK as I need to share. 

M let me shower her head this evening! She was crying with fear but her dad held her hands and we both talked gently to her, and I turned the thermostat down to almost cold, AND SHE LET ME DO IT. She was literally shaking with fear BUT she did it. 

And you know what? Afterwards, she said it was OK and she would let me do it again. 

This is HUGE. Massive. She has made a breakthrough. The heat is evidently the biggest problem, we can work on the showers, if she likes them cold then it won’t bother me. It won’t help at the swimming baths as the showers are pre-set (and frankly too hot) but I cannot repeat enough times how big a deal this is.

 Well actually maybe I can. So I’ll stop now. But I’m still grinning.

Back to School Anxiety

19 Aug

Sorry I’ve not been on much recently, the summer holidays have got in the way.

My brother is staying for about 3 weeks – he is a builder and is doing a mammoth list of jobs in the house including installing a new bathroom! And last week we had two dear friends stay in our back garden in their caravan, so we were all very busy keeping out of bro’s way and entertaining our friends.

Anyhow, seven weeks has whipped by in the blink of an eye, and tomorrow is The Big Day. Yes, back to school. And M is not happy about it, oh no. Her ability to cope with even the smallest changes has suddenly gone right out of the window, and her temper is something to behold. I hate to say it but her brother has taken rather more punches than any wee boy should be the recipient of, but sadly he appears to like winding her up. Of course, he’s the first to come crying to me when he’s spent ages pushing her buttons and she suddenly snaps, but what two siblings don’t fight at that age? I try to keep them apart when I can but they seem magnetically drawn to the other.

I have tried to keep things fairly quiet since the visitors left, and as M finds comfort in familiarity I have been letting her watch more dvds than I would normally.  Left to choose by herself she would plump for the same film over and over until it became almost part of her life, but as I try to run a democracy there have been days when her choice wasn’t picked. 

I have noticed a big upturn in echolalia too this last week. Most notably the other day when she was quoting huge chunks of Charlie and the Chocolate Factory on what seemed a never-ending loop. But she has also started what I think of as “immediate echoing” i.e. when someone says something and she almost instantly copies them, often under her breath for 15 or 20 minutes. I think she does this as a way of keeping track of what is/should be happening at any one time, as a self-reassurance, but when she repeats big parts of film scripts I am not entirely sure why. I suppose she is gaining some comfort from the memories of the pictures that go with the script and that way is maybe even retreating into a place she feels she knows.  I hope one day she is able to tell me about this process as I find it fascinating that her memory is apparently faultless. She even gets the accents spot on.

In a bid to keep the anxiety at a manageable level I had arranged to take her into school this morning, just for a wander about to check on what, if anything, had changed over the holidays. She was reluctant to go, but once we were in the door she was happy to skip about checking out the layout of the classrooms, and the noticeable lack of artwork on the walls. She had a double check of her separate desk in the library area, and a thorough look in her “den” which is her bolt-hole for down time if it all gets too much. I enjoyed looking at her puppets which I’d not seen before although I knew they existed. There are five of them, all with different facial expressions, and the idea is for M to use them if she is having trouble expressing her emotions. She likes the happy one best – good! Aren’t they a great idea?

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She seemed much happier after our short visit.  However, my plan to take them out for “a surprise” was met with tears and complaints of a tummy ache, sure signs of anxiety, so I had to tell them we were off to the cinema. We saw Despicable Me 2 and it was excellent. I had booked seats on the back row and this turned out to be a stroke of lucky genius – with no-one sitting behind us I didn’t mind at all when M sat on the arm of her seat, on the upturned folded seat, took off her shoes and socks, and then stood on her chair. She was hurting no-one and obviously needed the sensory input of moving around a lot. Even her weighted lap pad hadn’t kept her still this time but it didn’t matter. Another autism lesson learned today.

This evening was tough. M didn’t want to be strapped in a seat belt on the long journey home, she could barely manage to sit through dinner and although she kept saying she wanted cuddles she couldn’t sit still for one. Thank goodness for the miracle worker that is melatonin. She wasn’t as early to bed as I’d have liked but as she lay down without protesting too much I’m going to take it as a win.

Bring on tomorrow! By 2.30 the worst will be over and the first day back done.

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Silent Sunday

11 Aug

Silent Sunday

Relaxing

5 Aug

Due mostly to internet connection issues (again!) my blog time has been very sporadic, but partly also as we have all finally relaxed into the swing of being on holiday.

Getting the older ones out of bed has been an effort to say the least. I know all teenagers love to lie in, and in fact their bodies are going through a new stage that throws their body clocks out of sync, but it is extremely annoying when you also have two much younger children and would like to start and end the day at roughly the same times.

To be honest we’ve not been up to much getting out and about. I think we’ve all needed just to chill. For the teens that means a lot of reading, Minecraft and texting (!), and for the wee ones Lego, Sylvanian Families and lots of drawing and colouring, interspersed with running about in the garden or on the beach, and some TV/dvd times.

We did a lot of tourist type activities when the grandparents were all here so in some ways that was like going away, so I refuse to feel guilty. I do however want to take them all to the cinema at least once, as that will be a lovely treat and some escapism.

M has been mostly fairly calm, she is so relieved not to be at school (even though she has been coping very well when she goes) that she is generally content to be at home with me in sight. Her anxiety levels shoot right up if I attempt to go out without her, for instance to buy food, that for the most part I have taken her with me. She hates shopping and finds supermarkets taxing to say the least, so it shows how much she wants to be near me. Sadly, her autism comes with a gigantic portion of anxiety with the greater percentage based around knowing she is near to me, but if I can reassure her I always try to, even though my “me” time has been almost non-existent since school broke up.

Here was yesterday in pictures. No 1 son, R, decided to tackle some of the garden and at the same time thought the little ones should be playing outside, so he became all assertive and dragged them into the garden. It all ended happily – tired children and a garden with a long overdue haircut.

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