Pfft! Sat 23rd July 2016

Another “sunshine or showers” day here today, by that I don’t mean the weather but that our days are either good or bad, very much black or white with no grey (middle) ground.

Today was a “sunshine” day and one in which a very funny memory has been made for D.

There she was, happily splashing around in the pool, intentionally falling on and off the inflatable pineapple (which has been such a good buy) and generally enjoying herself when …… she fell off the pineapple (again), landed on an inflatable ball, which promptly deflated very quickly and loudly, shooting her across the pool.

She loved it.  And didn’t stop talking about it for ages.  It will certainly be a good conversation prompt in the future.

And the image above made her laugh too. More “sunshine” days please! 

Worried – Fri 22nd July 2016

It’s felt like D’s resembled a pressure cooker this week and not just because of the heat.

After from the joyful splashing around in the pool, she’s been a bag of nerves, occasionally spilling over.

We tried a quick trip to the library today as she wanted to choose a book, the same one she’d been reading at school but has had to hand in.  It wasn’t on the shelf and although the library wasn’t busy, it was all too much for D again.

She only relaxed in the coffee shop (me too!) as she’s familiar with it, she knows that the far end of the shop isn’t so busy and the stress diminishes as she sits with her (brought with her) book, water bottle, snack and good old Bunny.

Oh Bunny, she is getting ever fragile but extremely loyal, spending each night tucked into D’s arm, spending the days next to D or in a bag if we’re out, always available for a reassuring cuddle.

Bunny and friends:

D definitely needed a cuddle later on today as she finally told me what had been troubling her, to the point of tears.

She’s aware that her puberty-blocking injections have stopped (thank goodness) and what will happen at some time, but doesn’t know when.

For a child who likes to know items in advance, she’s not happy, that’s an understatement.

But I’m pleased she told us, opened up the subject and it means that the subject can continue to be broached, even though it may be as far away as in two years time.  I doubt it though, she’s showing signs oh hormones regulating and these are no doubt adding to her varied emotions.  That and autism.

We’ll get there.  

Just Too Hot – Weds 20th July 2016

It is a bit, isn’t it?

Let’s face it, we’re not used to overly hot weather in this country. Give me a gentle breeze with the occasional sunshine peeking through the clouds over recent weather.

It’s far enough if you’re on a beach and not doing much, but if you still need to keep on keeping on, whilst your make up slides off, it’s not brill.

The heat has affected D too, she didn’t sleep well last night, despite melatonin, so she’s been a bit “sunshine and showers” today, by that I mean extremes, with no middle ground.

T, who can seemingly sleep through anything after melatonin, again has the extremes of emotion, but without the tiredness.

You’ll see, come next week, when we’ve had days and days of rain, I’ll look back and wish for sunshine.

One bonus though, if I had have had my op a week ago, I’d been mega uncomfortable in the heat, a bonus there I guess.

The end pic made me smile today, needed after yesterday’s stressful town trip:

Over whelmed – Tues 19th July 2016

A lesson learnt today for me.  That I can’t assume.  

I’ve been super proud of D this last school year, she’s achieved and pushed herself in activities so much but sometimes it all collapses a bit, when anxieties and her stranger fear gets a bit too much.

I’d hoped that we’d have a girly trip to town, it’s something that we don’t do that often but is (usually) fun.  We’d have a little window shop for glittery pinky/purple items and “ooh” and “aah” at them, before lunch and some browsing.  With the majority of schools still not broken up, it would have seemed to be good timing.

Wrong.  On so many levels.  She bolted, she protested, she walked right out of shops – despite that being one of the “don’ts” that I’d hoped she understood.  

The triggers were frequent: someone being too close to her (even though they weren’t);  the noise of an alarm, the occupied lift (she won’t and can’t use an escalator), the roadworks and the bank.  Oh the bank, the one place where you need to concentrate specifically.  Too many people coming out when we were going in, fortunately not too many around when she shouted out “Mumma, I know your PIN, it’s ****”…. the gentle explanation as to why we need to keep PIN numbers secret which wasn’t met well and a bolt outside the bank and yes, more strangers.

The air con was in full force everywhere so I can’t factor in the heat as there was a breeze too, it was just one of those days where I had prepared her all I could and it just didn’t gel. It happens.

All seemingly forgotten as she splashed around in the pool later on, but I know today has tainted any future shopping trips, for a while anyway.  

It’s a shame it’s come at the start of the holidays but, bearing in mind it will get more populated in town, maybe that option is closed off for a while.   We’ll see.

C’est la vie.

Splashes and Smiles – Mon 18th July 2016

Sums up our day perfectly.

A mega warm day has meant plenty of pool play for D and rather a lot of splashing, I don’t need to water the garden tonight! 

Our girl – who hates having a hair wash but will happily get absolutely soaked in the pool and with the sprinkler on her – has enjoyed the first day of the school holidays.

T even ventured outside for a while and as he becomes very much a homebody in the holidays, it’s tricky to get him in the garden, let alone beyond the boundary fences.

And our first blueberries of the summer:

There’s never many and they’re all gone within a couple of weeks but it’s nice for the children to see the fruit cycle in the garden (pears and blackberries too, we have a peach tree but it doesn’t perform) even if they don’t necessarily eat the end result.  T eats the blueberries/blackberries , but not pears, D none of them. 

The only moment of potential gloom were glares engaged between the children and a spell of refereeing on my part.

Tomorrow – potentially – sees a trip to town for D and I as the majority of the school’s round here don’t break up until Wednesday, a good opportunity to have a low key look around before it gets busier.

I’ve just realised though that it’s summer sale time? Fingers crossed that D copes …

Empathy with Nanny McPhee – Sun 17th July 2016

D provided a touching little moment or two today, her understanding is ever growing and there was some empathy shown too, for the characters in Nanny McPhee.

“Nanny McPhee and the Big Bang” is one of our favourite films to watch together – what with the Raven partial to putty who saves the day, pigs who are a dab hand at synchronised swimming and, of course, the ever-changing Nanny McPhee – it doesn’t matter that D knows the script so well she will tell us in advance of every event, it’s something we can all watch together.

“…The Big Bang” was the second in the Nanny McPhee series, the first one being shown today.

D wasn’t so familiar with this one but soon embraced the plot, the smiling, dancing donkey making her laugh:

And the stepmother-to-be to the children making her worry:

It all ended extremely happily, with Nanny McPhee transformed (having done her duty) and the children very relieved with their new step-mother (not above).

D even shed a little tear at the end – and it was an emotional one – which was quite touching to see.  She was pleased at the ending and the music/scenery etc made for an unusual bit of empathy shown by our D.

She doesn’t notice if I’m unhappy (not that I am very often around her), but give her a film, “with words” as she likes the subtitles and perhaps the fact it’s not “real” and it affected her.

If you haven’t seen the films (and they’re regularly on ITV2), you must, they are a nice way to spend an afternoon when it’s too hot to be outside (something that doesn’t happen often) and it was too noisy outside anyway.

“Within Normal Range” – Sat 16th July 2016

That would be me, that was how I was described at a dermatology appointment this week.  I do wonder how individuals can be classed as “within normal range”, when there is no previous results for them.  I was also described as something else, but more of that later.

Take iron, for example, the “normal range” for a ferritin level is between (don’t quote me, this is from memory) 9 and 300, mine was 48, which is an improvement on my last test of 22 (January 2015) but still low, for a woman who isn’t menopausal etc.  In fact, at my last dermatology appointment, I was told it should be in the 200’s but because I’m “within normal range” this time, it’s “okay”.

That’s the only test I had a previous result for, everything else – thyroid, immune system and something else I can’t remember – was “normal”.

Anyway, it’s something that’s been occupying my brain a bit and maybe someone reading this has had similar?

A couple of years ago, I crushed my nails on one hand, between the springs and frame of a trampoline we were putting up.  It wasn’t pleasant and I knew that I’d done some damage.

Ever since then, my nails on that hand have been rubbish.  They grow, splitting and damaged to about half way and then, because I have no nail beds, they break and hurt.  I’ve also got no cuticles.   Shellac covers them and offers protection, but, it doesn’t solve it.  I’ve tried viviscal, chemists branded tablets for nails, immune system boosting stuff – you name it.  I’ve also got no feeling in two finger tips, it all says “trampoline damage” to me but the consultant wants to find a medical reason.

The complication also is that I was on tablets from January 2015 to the August for depression and sleeping tablets from January 2015 to June 2016, I’ve stopped them due to the potential foot operation. There’s also intermittent flucloxacillin for my leg.  So ….. that may have all contributed to my soul feeling happier but my innards suffering – and not letting my nails grow, who knows?  I can’t use Shellac for the foreseeable as it would all have to come off if my op happens.

There is also another side-effect we discussed which I’m not sharing at the moment.

Anyway, as well as being “within normal ranges”, I’ve baffled the dermatology consultant and, according to him, my nails are “abnormal but interesting”.  Nothing like boosting someone’s ego, eh?

They also took photos last week and I’ve been invited along to a teaching class so that students can have a good look and offer suggestions.  I’m trying not to feel like a bit of a freak show and think “yes, maybe someone can suggest something”.  That’s assuming that I’m not in mid op recovery by then (October) and can walk(!).

All the op uncertainty, coupled with the fact that T and D haven’t got on or tolerated each other today and my bruised ego made for a little cry today.   I’m hoping that by “blogging it out”, I can feel a bit less “freak show” and look forward to the next few weeks, whatever they bring.

What is “normal” anyway?!? 

Report – Fri 15th July 2016

Its been a week of highs and lows, a week in which we’ve seen school reports for both T and D and a day in which the news reports have reminded us just how fragile life is and how senseless some individuals can be, in the name of religion.

Report is therefore our word of the week.

Because T and D are at two different schools – T at secondary mainstream, D at SN school – their school reports differs vastly.  

T’s was very number-focussed, his current assessment against national levels and what he’s expected to be at, at the end of his next school year, with no detail apart from those traffic-coded numbers.

D’s was 23 pages long and went into great detail about the curriculum, her strengths, weaknesses and expectations against her individual challenges (IEP), it made for very interesting reading and reinforced for us, that she is in the right setting for her.  The numbers were there too, but we don’t compare her to T or to what her peers in mainstream year 7 would be achieving, there’s no point, she is individual and meeting – if not exceeding – her individual expectations.

Proof, if we needed any further, that both of my very individual children are in the correct settings, T would fit into a SN environment no easier than D would mainstream.

Something I hadn’t blogged about, but alluded to, was that T has been on Behaviour report at school for the last three weeks, he was told yesterday that he’d be taken off today – the last day of term.  The circumstances around his being placed on report seemed overly harsh and I have wondered if his traits are fully taken into account.  It was also very challenging for him in certain lessons (eg food tech) where he had no desire to taste or prepare the food items but gave the prep a go, even if the end results never came home.   September will see him starting his exam subjects and that, together with a new form tutor, should see a renewed enthusiasm for T.

But for now, they both need to wind down and – hopefully – enjoy some sunshine in the next few weeks.  I’m still waiting to hear if my operation appeal is successful, if it is, it could happen at relatively short notice, so we are planning ad hoc activities, as and when (not easy at times).

An end picture to raise a smile, D’s class went on an outdoor activity trip yesterday and she managed her anxieties enough to try this:

Extremely proud of her and her brother, they both do well.

Challenge Met! Thurs 14th July 2016

This week has sped by, it’s the last day of term for both T and D tomorrow – thank goodness they both finish on the same day!

All week though, there has been an undercurrent of anxiety for D, rearing its head every so often, sometimes resulting in her crying, sometimes anger on her part.

Why? Well, her class had a trip today, to where I’m not entirely sure but the instructions said (amongst things) trainers.  

This was a sore point for D as we’d ordered trainers in but they hadn’t arrived yet, so she’d have to wear pumps today – which would be fine, IMO.

The trainers I’d ordered were also laced, at D’s insistence, as she thought she’d get help at school with them.  Very insistent that she didn’t want Velcro too, I presume to fit in with the other children.

Anyway….off she went, with her pumps.  It was fine, she said that someone wore sandals, someone else had other shoes, so all was well.  

And her trainers had arrived whilst she was at school today, typical.  She tried them on after school and said that one of her teachers had given her a challenge for the summer, to learn to tie shoelaces.

There they are btw, they’re black, in the sale = job done.

So, we had a go.  I showed D how to tie laces and then she had a try ….. and absolutely nailed it!

Maybe it helped that we’re both left-handed, maybe it was easier for her to try the method on the right below, which I’ve always used.  Maybe and most probably, it was because she was able to follow instructions and, because the blooming things had arrived, was a bit more relaxed than she has been.

D loves that it’s called the “Bunny Ears” method too.

Challenge definitely met and yes, another little bit of independence and a heck of a lot of pride on our part.

I’m under instructions though, not to mention this at all tomorrow as she doesn’t want to be set another “hard” challenge!

Well done D!

Themed week – Weds 13th July 2016

D’s school had a French themed week last week and more of her work came home from school today.

It was a surprise to see her school books as I can only remember one year’s being sent home previously in the six years she’s been at SN school, very nice to look through.

One aspect that has shone out is D’s handwriting, she had told us that she’s been trying to do joined-up writing at school and, for a child who admits she finds writing “hard work”, we were mega proud to see this:

There was also a task to design a Tour de France jersey and her “…without crashing into other people or falling off the bike…” note made us smile:

And another example of a differing craft method, something which I’m hoping – after a trip to Hobbycraft – we can build on over the summer:

I’d been feeling a bit down today as today would have been my operation day if the funding hadn’t been refused so, some brill work from our D was a lovely tonic!