The Big Surprise

Not been around much of late, and that’s been a shame as so many things have popped into my head that I would have liked to share.

But sadly, yet again, the internet provision in the village has dwindled to nothing usable, and this time lasted for nearly a week. Even loading a page was mostly too much work. Our ISP who are BT, and yes I will name and shame them, have insisted once more that it is an internal problem, no matter that we have had an engineer round who states that is isn’t, we are obviously delusional liars.

But no more of that! Apart from organising a 20s themed dinner party for my eldest daughter’s 18th birthday (which seriously I am not cut out for; catering and I do not mix) I have been frantically biting my tongue every half hour in order not to spoil the kids’ Big Surprise. And I managed to keep quiet. Yesterday all four of their grandparents arrived in the village, to stay in one of the holiday cottages for a week. Hubby has taken the week off too, so hopefully the weather will be passable and we will create some wonderful memories together.

Wee M coped amazingly with the surprise. I do wonder if it’s simply because she couldn’t guess what was happening and knew that it would be a nice surprise (we made sure she understood that) but she has acted as though it’s the most normal everyday happening. I do think that not having them stay in the house has made it easier for her – no more people at busy times like meals or bedtime have definitely helped. The thing about autism is it never seems to be completely predictable. I was quite expecting her to bolt or hide from the grannies but she was fine, and only took a few moments before everyone got a massive hug. Makes me think that maybe just knowing she doesn’t have school for a few weeks has relaxed her enormously.

If you are not reading this in Scotland then I do hope you aren’t horribly jealous of us starting our Summer Holidays, but just remember when you are basking in the late August sunshine mine will all be back to school and noses to the grindstone, so it all works out about equal.

A little photo of the cake you missed – only photo I have without dd1’s name emblazoned on it, and taken from the back, so rest assured she was 18, not 81!

Silent Sunday

Silent Sunday

Time for Change

I cannot believe we got to school on time this morning. I secretly think there was a magic pixie holding the clocks back. 

M was not having it this morning. Not any of it. Nada. Nothing. Rien. It rather worried me to be honest as I am used to the rages and the screaming but the quiet whimper from under the blanket and then silence is not usual. I knew why; she was super anxious about the change around in the classes today – everyone was “going up” a year and the senior nursery children were coming into the infant class. No matter how many times I’d been through that nothing would actually change, her desk would stay in the same place, her work would be the same, and she even had a picture of all the new children, nothing would console her.

In the end I made the breakfast and left her upstairs. Gut instinct told me trying to bodily move her would trigger an instant meltdown and I couldn’t see how that would help either of us.

Eventually she came down, and ate. Then I dressed her and somehow we got up the hill in time for the bell. I’d even found time to update her home-school diary so her teaching assistant would know how fragile she was (she’s so good with M that I don’t almost need to do this, but I do). The cloakroom was very busy with seven extra children and M practically threw her shoes into the cubby hole as she whizzed past to the relative quiet of the classroom.

I got on with my day. Turns out Little Miss Worry was fine! Better than fine in fact. They had paired up with the younger children and made pigs – some sort of art and craft lesson. M loves art and sticking and cutting, and whether by chance or design she was paired with the wee cousin of her friend, so it all went very well.

One very relieved mum here I can tell you! It should make the next 2 days a lot happier and less tense for both of us. 

Getting to the Heart of the Matter

Today had to be planned out properly. Lots of changes for my wee girl.

On the surface she was delighted that I would be picking her up from school at lunch-time, with a packed lunch in the car, in order to be sure of making it through the roadworks near Inverness for her to be on time for her hospital appointment, but in practice a complete change of routine in the school day might not have been well received.

I decided to make a visual chart for the afternoon so that she could have it with her and refer to it as necessary. For a child who can speak so well, and at length (that’s me being polite for never shuts up) M processes pictures far better than words. Halfway through making up the board I realised we have no picture for Doctor or Hospital. Panic. Breathe.

So I resorted to Google and luckily found a decent picture, which I then had to draw as we have no printer. Seriously, we need to get out of the Dark Ages in this house. Board done, lunches done, I picked her up and off we went.

I had thought to insert a wee shopping icon on the board as I was hoping we would make enough time to stop off for some essentials, and as it was in the schedule M was fine with it.

We arrived at the hospital with time to spare and I thought I would show M’s new Autism Alert Card that is being trialled in our area by the NAS. The nurse who took M to weigh and measure her definitely thought before she said anything, and made herself very clear to understand, which was lovely to see. She was in no way patronising but there was a wee bit more effort I felt. The doctor too, was absolutely lovely, and M even told me afterwards “he was a nice man”.

The end result of the appointment is we are no further forward in finding out what is causing her heart to race, but it would appear that there is no real cause for major concern at the moment. The next step is a 48 hour trace, which will be fitted at the hospital as soon as it has been ordered in, and an appointment made, to ascertain how long the racing is for and what pattern, if any, it takes. I am not looking forward to 48 hours of M in a foul mood due to something stuck to her skin she can’t remove, but it will be a small price to pay if we can find an answer.

We had the return journey from hell, the tailbacks were ridiculous, and I broke the journey half way to buy her a cone of chips before she expired from hunger. They were mostly the crispy sort, her favourite, so I might use that chippy in future if I can work it into a meal time.

Even with all the changes to her routine, being poked and prodded by a stranger, and then the massive delays in getting home, she was amazingly well controlled this evening. She did have a wobble about pyjama time, but after a bear hug she rallied and was in bed at the normal time, all smiles and cuddles.

Very proud of my wee princess tonight.

 

Photo by Kirsten Ross

I’m Fine

Who’s said that in response to a question of “how are you?” Pretty much all of us I imagine at some point.

Now, who’s said that when they are patently anything but fine? Still pretty much all of us?

Yeah, I thought as much. It seems to be that the worse the situation the more likely we are to brush on a stiff smile and utter the above words while inwardly dying a little bit. Sometimes it’s literally all we can say without the threat of tears. And then we make an excuse to rush off (busy busy, must dash) and on we go, keeping the real response inside.

It can be anything that makes us feel this way. Work, lack of sleep, worry over exams, worry over the future (in general) or worry about specifics. Sometimes I can’t even tell myself why I am anything but “fine” and I am an allegedly intelligent 40-something woman who outwardly appears to be in control of my life.

So, how much worse must it be for some of our children on the autistic spectrum? I am thinking today of my 6 year old daughter – she has severe sensory issues – and how she struggles so often with everyday events that other people take in their stride. On her worst days just getting out of bed will put her “wrong” and she can be crying that her pyjamas hurt before she even down the stairs. Then her weetabix, which is made the same way as the day before, is too hot, or too lumpy, or the spoon (and she always has the same one) is bending her hand.

And so it goes on. But actually, I welcome the days when she can tell me what is wrong as it helps me to be extra patient with her, and take more time. If she has a morning like this, I will spoon feed her (sometimes literally) through her morning routine, undressing, washing and re-dressing her, and finding her school bag, zipping up her coat and strapping her into her car seat. I do everything I can to lessen her load if I know. 

Sometimes though, she can just be “grumpy” for no obvious reason. She isn’t particularly whiny or clingy but she is (it seems) full of anger and pent-up aggression. These are the days I hate, when I know something is wrong but I cannot work it out. If I ask her if anything is wrong I get the barked answer, “No, I’m fine” and then I do really worry. I can see it’s not fine, but however I try to rephrase my question I meet a brick wall. 

She is an academically bright child, who can speak well, BUT, and it is a big but, she has desperate problems with verbalising anything that is important to her. It can be her version of important, like yesterday when she spent half an hour before we finally worked out she was referring to Yorkshire puddings, to a much more essential problem like what is precisely wrong at school that has turned you into a screaming nightmare every morning for the last 10 days? I was confident (wrongly it would appear now) that it couldn’t be anything that had happened at school because once I got her there she appeared to be perfectly OK, and she was not in this state after school, which is when the bottled up emotions used to pour out, in a stream of violence and anger and frustration. I even went as far as calling the school to ask if they’d had any new equipment delivered (no) or had someone moved all the desks (another no) and I was getting desperate for an answer.

I turned to an autism parents group that I am a member of and asked for brainstorming. A chance remark hit the target. We have two new children at the school. Now let me explain, it is a very small school – fewer than 30 children – so any newcomer is obvious from the start. These two children are brother and sister and have joined the infant class. They came for several visits over the course of two or three weeks, and they are quite delightful, quiet, well behaved and basically I defy anyone not to like them. Each visit, M had a note on her visual timetable to show her when they’d be coming. All was well.

I realised that the school had totally overlooked to put their permanent arrival on her timetable. Ten days ago they turned up at 9 am and are now in situ all day every day. M has been playing with the girl at break times in a small group (I can’t believe I can write that last sentence, it seems so magical) and is happy to call her a friend, but she has not been able to process the transfer of these children from occasional visitors to permanent additions.

I spoke to her about it when I realised, and took care with wording my questions. However I asked her she denied that she had any issue about it at all.

Interesting then, that since our talk, and my explanation of how sometimes new people join a group, and that’s OK if you like them, and also OK if you don’t, and that it takes time for it to feel like it did before, and indeed sometimes it will never feel like it did, but it might even be better, that she has not had one screaming fit or tantrum.

In fact, this was her yesterday after a regular day at school and a fantastic evening outside with the Beavers. She was tired after a hectic day but still coped well with some social interaction “after hours” I am so proud of her.

Just another (not so manic) Monday

A real case of same old same old here today. M was in fighting form before school, and sadly I mean the state of combat rather than raring to go. She is often like this in the mornings, until she gets to school and settles down, but today was particularly bad. I don;t know what more we can do, we have visuals and I never change the routine on a school morning, but sometimes autism doesn’t have a ready answer. I was amazed that we made it to school on time. 

Then I returned home to such chaos I didn’t know where to start so I abandoned all pretence of housework and made an important phone call. It was something I had promised to do to try and help someone, and I really wasn’t sure I could make a difference, but anyway, I did it, and followed it up with a lengthy email, so I am hoping to have done my part to make things better. I can’t really explain on here as it might get legal so just in case I’m keeping quiet.

Due to a slight freezer door malfunction over the weekend the fridge was full of interesting items that could be heated up and mix’n’matched for tea so that saved me my normal running about like a headless chicken getting dinner cooked before I rush out to collect the little ones and take them to drama class.

Eldest daughter was waiting at the theatre for us when we arrived – back from her music festival looking very tanned and very tired, so we chatted while the wee ones were occupied, then we trundled home through the rush hour traffic via a supermarket to pick up some essentials.

We all ate leftovers and then I managed to get the wee ones into the bath for a lightning clean up before a quick cuddle and bed. The pair of them were totally hyper – I have no idea why – and I was close to losing my rag with them, but I held it together and we had lovely hugs. My children are so squishy and loving, cuddles are my very favourite bit of parenting.

So, that’s been it. Nothing to report. Which is probably an enormous part of my life. Oh yes, I did just squeeze in enough time to slosh some varnish on my toe nails (first time since last summer I do believe). I think a lot of us have days like these, and to be honest I have no idea why I’m documenting it; maybe just because I feel the urge to write and they always say to write about what you know. So I have 🙂

Oh, and just because I can, I am adding this part of a photo that shows my gorgeous girl having the time of her life at the RockNess music festival. This photo (I have cropped it) was taken by and is owned by the rather fabulous Newton Faulkner. E is on the far right in the tie dye T-shirt – as you can tell she was enjoying Newton’s set a lot.

Silent Sunday 9th June 2013

A good week

We’ve had lots happening this week. DD1 had the final 2 exams of her school career, and now she is a free agent and off at her first music festival.

DD2 is now in her 5th year of secondary school and came home today happy with a Swiss roll she’d made in a cookery class (It was cooking or Higher Maths so she went for the practical option – smart girl) and we pronounced her a newly discovered baker 🙂 It was delicious.

DS1 completed and passed his Duke of Edinburgh Bronze Award, a great achievement and made even better by the fact he had an awful start to the week at school and I am still trying to sort out what on earth some staff were thinking. More of that in another post. Here is a snap of my big lad setting off for his trip:

 

DS2, who has been struggling with anger issues for most of this year, completed the week with a full sheet of green stars for good behaviour during the school day, which made him so proud of himself, and rightly so. It’s not always easy being stuck between 2 siblings with additional needs and he is learning how to channel his feelings in a much more appropriate manner.

And M? Well, she had a cracking week in school – despite some serious reluctance in the mornings to even eat her breakfast – and no meltdowns have broken out. She has lost her temper plenty of times, and there have been tears, and extra cuddles have been needed, but it was a happy wee girl who talked me into another beach afternoon today. And why not? The sun was shining and it was hot; tomorrow it could be raining again. So we did some of this:

and even some of this:

Wishing each and every one of you a good weekend. 

Cutting the apron strings

Dd1 is off to a music festival tomorrow. With most of her school year and half the year below as well. They are camping on site. and she won’t be back home till Monday late afternoon/evening. The line-up has her practically bouncing with delight and the weather forecast is good. It is the last chance all of her best friends will have together before they go their separate ways and I am praying it brings her joy and memories to look back on for a lifetime.

I am trying so hard to be chilled about it. Last year a young man died at the festival after taking a “legal high”. Supposing she gets offered something, she will say no won’t she? There are always some idiots who get rip-roaring drunk and cause mayhem, and I don’t want her being in the way of any of them (she’s physically quite small). And as she is still just 17 herself I have extracted a promise from her that she won’t drink alcohol. I think I can trust her. She knows if she’s caught and ID’d she could be evicted and lose the weekend so I am hopeful. But, in any case, I need to learn to let go of her. She has now finished school forever (where did the time go?) and in the autumn she will be off to university in either Glasgow or Edinburgh so approximately 200 miles away – not round the corner, and my little girl will be an adult and all grown up.

The first time she went away for a weekend with the scouts I remember feeling almost physically sick with worry. This was admittedly my problem, and nothing to do with the scouts or the leaders – just pure parental panic – and over the years she has become increasingly more independent, going away with school and scouts for ever longer periods of time. This is a Good Thing. If we are doing our job right as parents then our children should grow in confidence and learn to cope without us. This is how they learn to fly, metaphorically. I know in my head this is how it should be.

So why does my heart hurt so damn much?