Archive | July, 2013

A Hospital Visit

25 Jul

Yesterday was the “dreaded day” when M got her 48 hour heart monitor. The purpose is to try and discover what is causing M’s wee heart to suddenly race. It might possibly be the case that she has a reaction to melatonin, but her regular paediatrician and the hospital paediatrician both think it’s more likely to be anxiety-based. Although it must be distressing to be so anxious that your heart speeds up and pounds I find myself hoping that this might be the answer. A melatonin related cause would be disastrous for M’s sleep issues, and a physical defect in her heart, well let’s not go there for the moment.

As it turned out, she was very calm, almost subdued, while it was being fitted – I had been worried she might take one look at all the wires and bolt – so after ascertaining that trampolines were not out of bounds, and as long as she kept herself dry e.g. no baths or visits to the beach or swimming pool, she was free to continue with life as normal, a happier wee girl left the cardiology clinic.

I had promised her that after lunch we could go to the Early Learning Centre and she could see if there was a wee toy she would like for being a good girl. Luckily for her these had just arrived:

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so pocket money was handed over with a big smile.

Due to M’s general high anxiety in towns and shopping centres I had made her a fairly detailed visual chart for the day. However I was delighted that when I realised we had time and suggested a trip to the big park that she was more than happy to go.

The park was very crowded and contrary to my explicit instructions M kept running off, towards the parts that had fewer children in, so we decided to hire a boat to take her away from the temptation to run. It was surprisingly hard work, but a lot of fun.

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Final stop was at the outdoor gym section that I had never noticed before; again it was very quiet this end of the park and M illustrated nicely how being wired up all over wasn’t going to slow her down

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Now we just have to get through until tomorrow lunch-time and then the monitor gets sent back to the hospital to be analysed. Let’s hope we get good news! 

 

The Comedown

19 Jul

Yesterday I wrote about a swimming trip that didn’t end well for M.

She went off to bed last night in a seemingly good mood, apparently none the worse for wear after a sensory trauma. However, I felt, and continue to feel, guilty for handling it the way I did, I am working on the guilt, I know I need to forgive myself and move on but it’s taking time.

However, today I have wondered more than once if the inability to settle, the whining and the all-round restlessness that were not apparent yesterday are the products of a delayed reaction to the stress M suffered yesterday.Maybe I’ll never know. Maybe in five years’ time she’ll be speaking to me about something and will suddenly turn round and remind me about the horrible time when I nearly “drowned her” in the pool showers (her words not what actually happened in case you didn’t read yesterday’s post).

I have learned a lot from my older boy, R, about all the sensory tortures he endured as a small boy when he was unable to sort out and verbalise his pain, so I am hoping that with his help – as well as my increased knowledge of autism and sensory processing – that I am minimising M’s exposure to things that hurt her.

What I probably should have spent today doing (instead of a myriad of essential household chores) is having a snuggle day with M, treating her to lots of deep pressure massage, lots of water play, and maybe the Play Doh too. But instead I have been busy doing Mum Stuff and although I did encourage her to get out a drawing set which kept her happy for a while, again I feel I have rather let her down.

But, she is one of five children and a large family brings a lot of work. All my kids take turns to help in the house, but this is my job and therefore I need to do the majority share. Of course, being Mum is also in my job description, and if I were marking my performance for a review at work I wouldn’t be surprised to receive a “could do better” remark.

To make amends tonight – as I simply refuse to burden myself with more guilt – she can have a long bath with as many toys as she likes. It will hopefully give her the input she needs to truly calm her down, inside and out, and maybe tomorrow will be a better day all round.

A Sensory Lesson

18 Jul

Life at the seaside has been chuntering on quietly for a few days – we are well into week 3 of the school holidays and the frantic pace of weeks 1 and 2 has been replaced by a sense of relaxed enjoyment.

Until I c o c k e d it up today 😦

I checked the times on-line and then asked the children if they fancied going swimming this afternoon. A resounding yes. As a wee extra treat I took the 4 that were at home (dd2 is away for 48 hours with friends) out to lunch at a local cafe. All went well. Really well in fact – no arguments or silliness, which was lovely.

We returned home for a while then set off for the pool.  There is a more local one but it’s housed in the same school that ds1 had such a nightmare time at and he’s not overly keen (putting it mildly) to be returning there any time soon, and the further pool is bigger and has more facilities.

B can pretty much swim by himself now, although he lacks confidence to swim on his back, so his big brother and I took turns coaxing him to practice, and keeping an eye on M, who can almost swim but needs someone there all the time. Twice during the hour the lifeguards open up the water chute and the little ones took turns to queue for the plummet down the slide. R and I took turns to look out for them and the other one of us got some “proper” swimming in. It was during my swim time that I had a realisation. I had left “The Jug” at home.

This is a photo of The Jug:-

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Actually that’s not our one but it could be. It lives in the bathroom as M cannot bear water dripped onto her head i.e. like from a shower. So, if she needs her hair washed, or if we go to the swimming pool, we use the jug. At the pool I fill the jug from the shower and wash her that way. She can cope with the feeling of water pouring onto her head (not that she’s keen but she can cope) but according to R who used to be the same, the feeling of a shower, or indeed rain, felt like millions of needles attacking him all at once.

So you can tell my enthusiasm for the outing suddenly waned at this realisation. If M wasn’t annoyingly sensitive to chlorine and would have been able to tolerate the quick shopping trip and the 20 mile journey home without breaking out in a rash and clawing herself half crazy I would simply have dried her, but she really cannot wait that long after a swim. Even if we had skipped the shopping trip and just bought everyone a drink – they insist after a swim – it would still have been too long.

When the hour was up I told her that I had forgotten The Jug, and she was nice enough to say she hadn’t remembered either, which I thought was very sweet. Then it all went a bit wrong. I did tell her I would be as quick as I could, and I know she believed me before I stuck her under the water, and I did stand under there too shielding her from the full blast, but the second hot water hit her head she lost the plot. What can I say? She is only just 7 but wearing age 9-10 clothes, so she’s tall, and when in meltdown she has the strength of a full grown tiger with a grudge. Luckily I am built like a shed (not entirely true) and have the tenacity of a whole roomful of tenacious people, so I did just manage to hold onto her, but a child in full meltdown covered in shampoo makes an impressively slippery target to cling to. I felt absolutely awful. The second she was rinsed enough I bound her very tightly in 2 large towels and just held her. She did calm down, and enough for me to have a shower myself, but she was rather subdued for about half an hour. She couldn’t even make a choice between the drink she thought she wanted and an ice lolly which I figured might be a nice wee treat. I think by that time she needed a choice made for her.

So, lesson learnt. Whatever else I forget, do not ever forget The Jug. 

Just as a footnote – M was sufficiently recovered tonight to ask to try all the different kinds of lettuce in the bag of salad I had grabbed as part of our tea. As I had assumed she wouldn’t be eating anything green, to say I was astonished is an understatement. Neither has she made any mention of the shower from hell since it was over, so I am hoping I am forgiven. Be a bit longer before I forgive myself!

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Silent Sunday

14 Jul

Silent Sunday

Washing the grumpy away; a sensory need.

8 Jul

I thought M had woken up in a cheery mood today and I was all set for a peaceful day.

Hah! She suddenly turned into Little Miss Horrible, and by the time her breakfast was served she was in tears and had been screaming at everything (OK mostly me).

With a huge list of tasks to achieve and 3 teenagers still to rouse from slumber I did not need a screaming and crying 7 year old., and I was at a loss to know what had happened to derail her seemingly good mood. After another hour of seriously trying behaviour I managed to encourage her to get dressed and I suggested hesitantly that she might like to take her Barbies back out into the garden for another “jacuzzi” like she did yesterday. 

Well folks, it worked! It actually flipping worked. I filled a smallish bowl with water and hefted said jacuzzi onto the lawn. M ensconced herself comfortably and starting drowning, I mean playing with, her dolls. The good mood came back and even after we had to finally stop for lunch, it remained. What the heck was that all about?

I think I solved it – both parts. Firstly, she had got up in a good mood, I was right about that. It was only after she realised that hubby had gone back to work that the change hit her. He has been home for 2 weeks, and she does love her daddy, so him suddenly going away was bound to upset her. Neither of us thought to make her a visual chart for his time off, so she could count off the days till he returned to the office. We live and learn. Nest time he has time off we will know better.

And the return of the good mood? Well that was sort of lucky, but I think somewhere in the darkest recesses of my brain was a little voice reminding me about the water. M is drawn to water, and especially cold water. For months we were finding her sneaking into the bathrooms to pour massive basins of ice cold water into which she would plunge her hands, for hours if we would have let her. Sometimes she put plastic toys in as well, but mostly she would just run the water over and over her hands. It became a real problem when her poor wee hands started to crack. She needed to stop doing this as she was in pain, but whatever we tried was to no avail. She didn’t do this at nursery, only at home.

I am sure the medical professionals thought I was nuts. The GP gave me some cream to try and soothe her skin, but soon as I’d turn round she’d taken to sneaking off upstairs to fill the basin there. It used to really upset my eldest dragging a sobbing M away yet again from a basin of frozen water, her sleeves sodden and her hands raw.

In the end my friend L, who works with children with autism, told me she thought it could be the toddler/child equivalent of cutting herself – a numbing type of self-harm that blotted out the other pain she couldn’t express. This is when we started to wonder if our quirky wee girl might actually be autistic. We had been asking for a referral regarding possible ADHD but had not considered autism as she was so different from her older brother (yes I know we fell into that trap, stupid).

Turns out we were right. The strain of being at nursery every morning was what was causing our poor lassie to hurt herself by freezing her tiny hands as often as she could. It makes a lot more sense now with the benefit of a few more years and a lot more experience. Water has always been, since birth, the most calming tool M has. If she has had a bad day I offer her a bath to soak in, and it always helps. So giving her a bowl of cold water to legitimately stick her hands into for as long as she wanted was the best thing I could have done.

Every day I wake up fairly confident that I know how to manage my little girl’s needs, sensory or otherwise, and every night I lie down thinking about how far I still have to go before I truly understand her. I only hope that she knows that I am trying, I really am. I want her world to be safe, and calm, and happy. 

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Silent Sunday

7 Jul

Silent Sunday

A Busy Week and a Birthday

5 Jul

Scottish schools broke up last Friday so we have just finished our first week of the holidays.

And what a week! What the children didn’t know is that we were keeping a big secret, which was that all 4 of their grandparents were coming to stay. Not in the cottage (no way would we have room) but in a holiday cottage a few yards away.

We have been real tourists. We’re been to John O’Groats, The Castle of Mey, a boat trip on Loch Ness and a distillery tour. Today we had a BBQ in the back garden for M, who is 7 today. 

Unfortunately for me, M decided 5 am was a good time to start her birthday, and therefore also a good time for me too. There was a division of labour between hubby and me; he got the shopping list and I got the cooker, and then hubby’s dad came down to lend a hand with the meat (always handy to have a retired butcher in the family). We headed into the garden about 2 o’clock and have only been back inside for about half an hour. The kids still need a bath but we are waiting on one more visitor, M’s godmother, who has been at work today, and frankly M is so high from sugar and excitement I am wondering if her usual melatonin will actually work to help her off to sleep.

M was quite definite about what she would like for her birthday, and even wrote a neat list. She has a fairly narrow set of toys that she will play with, and we have learned that it can be a waste of money to buy her something radically different, so she was delighted with gifts and cards of the Hello Kitty, Sylvanian Families and Moshi Monster variety. I do think a lot of their value is their small size – they are easy toys to hold in the hand, and also to line up and categorize, something M often likes to do. If she is very calm she will act out scenes for the figures, and I often hear film scenarios or excerpts from TV shows in her play. If she is more anxious then the play becomes more of a mammoth tidying session, with everyone and everything being put into lines or into boxes. It’s part of her autistic nature to take comfort from this sorting, a calming tool, but I do like the fact that recently she has done less of it, I am assuming it is linked directly to stress, and now we seem to be managing her world better in terms of keeping the worst stress at bay, the less of this behaviour I see. Every aspect of M is a learning curve for me, and I hope that maybe one day I can work with other children on the autistic spectrum and help them with what I’ve learned.

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