Welcome to another Wednesday!
The Small Steps Amazing Achievements linky, hosted by Jane at @ourlitescapades and I, is taking a little summer break and will be back with you on Wednesday 7th September 2016.
Enjoy the rest of the summer and we both look toward to reading your lovely posts and finding out what your superstars have been up to soon. Jx
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This will be my last diary blog for a few days, I need to take a little break. Yes, another one.
As mentioned in my Apologies for Absence post, I’m waiting on an appeal decision for my operation and that, together with a quite full-on autism-related summer holiday and the fact that the sleep fairy is not visiting me much (not good for energy) leaves me to feel that I should remove some pressure.
You’ll see a couple of reviews in the next few days – I need to cross them off my list – and a Small Steps Amazing Achievements post but, until I know what’s happening with my operation, I’m having a diary post break.
I hope, I really hope, that I’ll be hearing positive news soon, keep your fingers crossed for me please x
The sleep fairy didn’t visit me again last night, blooming thing! Whether it’s because my brain knows that my operation appeal is being heard this week or not, I don’t know.
If I Was By Midge Ure was on one of the music channels today and, as its one that D has heard a few times, she let me sing along, if it’s a song she doesn’t know then it’s a hands over my mouth job to firmly stop me.
She asked me how I knew the words and I told her how old I was when the song came out and as that was (flip me!) 31 years old, I’d memorised the words.
She thought and thought and said “you were xx when this song came out and that was 31 years ago, so … you’re xx years old!” with a triumphant look on her face!
So? You might think, well, that was mental maths from our girl and adding two double-figured numbers together. Impressive for someone who is usually reluctant to try out mental maths in case she gets it wrong and she then worked out how old I’ll be next birthday.
Well done D! Now, if you see the Sleep Fairy, send her my way please.
You may have noticed this little badge on the blog, just a teensy bit pleased and another reason to smile today, in the Health category:
We had a bit of a successful trip to our local shops today, no mean feat as last time’s was a bit of a nightmare, with D overwhelmed by people/noises/everything.
Today was, I think, helped by the fact that D had a bag to carry. A bag that was quite weighty as we had bits to take back, then got light as items were returned, then got heavier after our waitrose trip. She is always very receptive to weighted sensory aids and maybe it helped her, having something to focus on. When the bag got really too heavy, Hubbie took over with it and I gave her my handbag (always weighty) which seemed to help.
We popped into Costa (yippee) and at the back, in the corner, were a group of teenage girls. Laughing together, showing each other their phones, not much older than D. Part of me had a little mini moment of “I wonder …. would she have been in a similar group this holiday were it not for autism and her related sensory issues? Would she have taken selfies too?”
And then, back to our table. We had a few silly moments, D taking pictures of Hubbie and managing to turn the flash on on his phone, us all trying to get into shot, eyes closed or giggling and all.
D can’t pout, she tried. I’m quite glad actually. She smiles. She cuddles. This isn’t the best shot ever but it’s me and my girl today, together.
There’s been some “funny” moments tonight with D saying “go to sleep if you want to”, bliss, I think as she’s next to me ….. eyes closed and then I’m shaken as she wants to check if I’m awake or asleep! After the fifth or so time, I stopped trying and it’s been nearly time for matchsticks.
Banter, something I wish there was more of in this house. Remember the Oxo ads with the light-hearted exchanges around the dinner table – and they’re all eating the same meal btw – I’d watch those and think “yes, I’ll have a family one day and we’ll do that”.
T loves a bit of banter, on his terms. An example today was that he was reminding me that the football season was starting soon and wasn’t I going to enjoy it? I replied along the lines of “oh course and just think, if I do have my op (appeal being heard next week) I can watch sky sports news all day and tell you about it when you get home from school”. Very, very tongue in cheek, which T understood. D didn’t. In fact, the banter horrified her (she’s not a SSN gal).
And then a bit later, we were debating potential pet names, which led to a cartoon characters reminisce and some fun as scooby and scrappy doo and all sorts were banded around, which sent D away in tears because she felt we were “too noisy” and she “felt left out”.
It’s so difficult to just have a little giggle sometimes, a little bit of banter.
Today’s back-fired. Some 1:1 time with D with some (very) general banter wouldn’t. Life isn’t what you imagine sometimes is it?
If you haven’t seen The BFG yet, do, it’s a wonderful family film.
I didn’t know how busy it would be – not very – and, as we were going to a cinema D hadn’t been to before and getting a train there, how she’d be, but she was brilliant and really enjoyed the whole experience (apart from the escalators but luckily a staff member guided us to a lift).
There are a couple of scenes which may scare younger viewers but they are over very quickly.
We shall be definitely getting this on DVD when it’s available and as we went with a couple of D’s school friends, it will be a nice reminder and talking point for her for the future too.
And afterwards, we popped into a pet shop and saw these:
Too cute and they were so socialable!
D has wanted a bunny, or bunnies, for absolutely years but we have resisted because a) we had Guinea pigs and b) we wanted her to realise that pets take some responsibility on her part – helping to feed/change bedding etc.
During chats this week, it’s become clearer that she has matured sufficiently to – maybe, hopefully – help with care if we did go for it.
A To Be Continued and a good day!
As the title suggests, it’s been a mixed bag of emotions today.
On the one hand, D’s been a “bit” anxious about a cinema trip scheduled for tomorrow, it’s bound to be busy and we have a walk, then a train, then a walk to the cinema and vice versa, plenty of time for either a happy, skipping-filled walk or an arm-squeezing/pinching, shouty one.
And then, she’s been giggly, giggly as the washing got taken off the line because certajn items reminded her of “Frosty Knickers” from “The Chase” (being white and therefore the colour of ice, apparently).
Later on, stresses as she had a hair wash and wriggles with a quick fringe trim. Followed by mega, mega squeezes …. gosh, she’s getting strong!
I’ve got my fingers crossed that tomorrow goes okay and that she enjoys the film, she’s opted to see “The BFG”, which is brill as I’m looking forward to it and much of their school work had a Roald Dahl theme this year.
We shall see.
End picture image from swoyersart.com, isn’t it cute?
One thing I always enjoy sharing on the blog is D’s artwork, she has a couple of calming mechanisms, one of them would seem to be incessantly looking for My Little Pony images – and then taking into every detail of the picture, one by one – and another is drawing.
I don’t ever remember a non-positive drawing by D, I guess for a child whose negative, anxious emotions can arrive and depart very quickly, they don’t manifest quickly enough into a drawing, something I’m grateful about as she’s extremely visually-led and her seeing a negative image would no doubt remind her of the emotions within.
So, this is a drawing she started yesterday and finished today, as always, I love the detail in it:
“A Night Sky”
To the left of the picture is a cave with two treasure chests, one open with a necklace and coins and one closed:
She also discovered that, angling her desk light (which she has on at night), meant the light shone through the back of the paper (don’t worry, the paper and bulb are a few inches away) making it a definite “Night Sky”.
Who says that autistic children have no imagination?!?
I’m sorry, I’ve neglected you big time over the last few days, I needed to. To take some time out, have a little blog/tech/email break and just gather myself.
I don’t like to mumble and grumble but it felt like that’s how I was getting. Sure, we had a wonderful time at the SN adventure playground last Tuesday, but the anxieties for D that manifested after we got home and the days following made me realise that, whilst she’s maturing in many ways, those anxieties and her inability to cope with them are still very much there.
What else happened? Well, one of our pets died. A much-loved little pet. It was very clear last Thursday that he was fading and he held on until Friday morning. T was teary but D’s reaction was “oh, what pet are we having next?”. No emotion, just very factual which upset me and made me wonder how it would be if it had been one of us.
Which brings me to …. my potential operation. There was no news last week but I’ve found out today that my appeal will be heard next week and I’m now pencilled in for the end of September, if it’s approved. Which means that at least we now know something, even if it’s still quite up-in-the-air. I’m now not waking up thinking “will I know something today?”, which was not doing much for my wellbeing.
Yesterday was a good one. The sun shone and, for the first time in months (and I’m not exaggerating that) T and D actually got on. She was in the pool and he was aiming soft balls into a rubber ring which she held, they laughed together and it’s only when they do laugh that you realise how infrequently that happens. I was watching, smiling, thinking “I’m not taking pictures, I just want to savour this moment”. All back to “normal” today with T upsetting D, with a little bit of what he sees as “banter”, which she can’t process and respond to.
It feels like I’m on eggshells a lot of the time, waiting for a situation to manifest and then I head into “referee” mode. I don’t like feeling like this, again it’s not brilliant for wellbeing, but I can’t switch off because I’m second-guessing and anticipating (it feels like) 24/7.
Our summer seems quite “ground hog day” ish with D finding it difficult to cope with being around people at all really. Maybe it’s a case of the fact that everything is a bit fuzzy inside as the hormone-blocking injections have now stopped and she’s catching up. I don’t know, it’s very difficult to ask her how she’s feeling, again it’s a case of second-guessing.
So, until they head back to school, there may be days when I’m not doing a daily blog, it may be that I don’t feel like it or that there isn’t much to tell, sometimes it’s the case that everything feels a bit “raw”, like last week and “blogging it out” just brings everything flooding back.
Bear with me, I’m much happier being a positive J than a “woe is me” J. It just makes things seem more achievable, doesn’t it? Jx