We have a new little occurrence here in the Bluecrisps household, that of the Sleep Tickle.
What’s a Sleep Tickle?
Well, it has taken D until virtually the end of the school holidays to accept a little bit of a lie in, in the morning. Sound familiar or just us?
Whereas T will happily snore well past his usual wake-up time and beyond, D has kept to her routine. And I’ve either had some spooky sixth sense and woken up just as her smiling face appears around the doorway, or been woken up with a jolt as she bounces beside me.
Today, it was that usual early time but unusually she was happy to read whilst having a cuddle and I had a doze. Apparently I was tickling her whilst dozing, kind of I guess like one of the cats when they’re dreaming and their paws start twitching. Who knew that I sleep tickle? Certainly not me.
D remembering that got us through a very busy trip to town, via the hospital to pick up her melatonin. It was packed, absolutely rammed with festival goers and families. Why had we picked today? Well, the weather had put me off earlier in the week, that and the start of my Teatox which meant I didn’t want to be far from home (shall we say).
There was squeaks and squeals of discomfort. There was downright reluctance to go anywhere where it was likely to be busy (most places) and there was relief and a visibly more relaxed D when we got home.
And in wonderfully typical “live in the moment” D-style, there were no “worst bits” at teatime for D (or T), instead “sleep tickles” became one of the funniest.
Enjoy the long weekend!
Yep, I’ve spelt “fancy” wrong, it’s on purpose – although the WP automatic spelling checker thingy did not like that at all.
It’s Thursday, nearly the weekend (yay!) but also nearly the end of the last holiday week before T and D head back to school (one on Weds, one on Thurs) and I get a chance to head back to the gym.
My word for this week is “Cuppa”, bizarre if you know me in real life because I do not like tea usually, in any shape, smell or form. The smell along is enough to put me off and it’s a rarity that I will make Hubbie a cuppa because of that.
(I’ve just realised that that probably counts me out of ever working in a coffee shop… anything you’d like to tell us? Yes, the smell of tea makes me retch….okay, “thanks” for coming in!)
My reasons were partly as an experiment to see if I could bring myself to drink the stuff and partly because I’ve tried colon cleansers before and they’ve always been (shall we say) effective. I would love to try out the “hosepipe up your innards” just to see the after effects, no not those (!), more how I’d feel afterwards but haven’t plucked up the courage to give it a try.
So, on that note (sorry), let’s do positive thoughts and say how the week has gone:
1. Afore-mentioned cuppa
Now, these don’t taste as bad as I thought they would although it was a bit of a grimace moment when I first tried them. It’s one cuppa in the morning for 14 days and one evening one, on alternate nights (so 7).
The first day wasn’t too bad but the second (after the evening one too on the first evening) ….. goodness me! Let’s just say it worked and, if it had been a return to school day, I would have had to make arrangements for D.
Since then, all is calmer and I presume the bags are happily working away. I’ve got used to starting my day with a cuppa too.
2. Fascinating Butterflies
I have a bit of a “thing” for fascinators, even more so as my hair has suffered this year, following my two months or so when I couldn’t eat properly.
The one above isn’t for everyday use (no kidding!) but it’s one I saw in Debenhams ages ago, loved it, walked away and then spent weeks wishing I hadn’t. By that time it was out of stock and there started an eBay stalking to see if there were any.
(eBay btw is fantastic for fascinators! There are so many people (it seems) who buy their special outfit, wear it and then stick it all on eBay. Well worth a look. It does backfire though, be sure the listing says “comes from a smoke free home” unless you want that effect as the package is opened.)
And then, last weekend, I was having a browse online at Debenhams and there it was! In stock and in the sale too. I clicked away as fast as I could and then wondered if it would arrive, because it disappeared from the website again. Worry not. It did and it is wonderful, lots of multi-coloured butterflies and, okay, it’s something that won’t be worn that much, but I know of a certain butterfly-loving girl who will happily dance around in it if I ever tire of it (I won’t).
After last week’s disappointment with T’s team disbanding, it all went a bit quiet for a few days. I thought once we’d sent the final email out, it would be acknowledged and that would be it. I was surprised at how darn protective of the (what was left of them) team I felt when someone (not us) tried to manhandle them into a situation. Grrr.
T has just come back from a trial training session with a team and he has another tomorrow, so he should still be able to play, it’s just the question of where and who with.
I’ve also been asked to help out with Comms and Events at the club, who tried so hard to keep the team together, so that could be interesting!
Obviously we are extremely relieved that T should still be playing one way or another. He hasn’t liked hearing all the debate about one team versus another, he just wants to be told he’s playing and that’s it. Understandably he’s been demoralised (we all have) but hopefully there is a way forward for him.
4. Our Lovely D
Has been very cuddly this week, a bit down as the consequences of her not having her injection start to become apparent. I’m very glad she’s been at home, cuddles on tap are far better then she feeling miserable at school and me worrying how she’s getting on, aren’t they?
Now I never ever thought I’d have a tea-related WOTW, but there you go! How’s your week been?
D’s memory seems very complex to me. On the one hand, she only has to hear a song being played once for her to memorise the tune and (her interception of the) lyrics, on the other, unless she has a visual prompt, it’s very hard for her to remember what happened a few hours ago.
The song/lyric aspect is really amazing, the song will have been on a music channel the day before or even longer and suddenly D will burst into whistling or humming the tune and singing the lyrics. It can range from a (really quite) random to a popular song, the common denominator being that it would have recently been on Vintage TV – even if the rest of us couldn’t remember watching it.
There was a trigger of a different kind today, one that reminded her of her hefty trike fall last September, unfortunately. It was an episode of Friends, the one in which George Clooney guest stars as a doctor.
She got extremely upset that it reminded her of her trike accident and was then worried for the character (Rachel) who was injured. Poor D.
I’m glad that she told me straight away, rather than bottling it all up (which is an issue during school).
It makes me wonder whether, if she sees someone falling over in the playground and getting upset, it then reminds her of her trike fall and those emotions are gone over and over in her head, until she sees me and there’s an unhappy bolt, as her emotions bubble over.
There isn’t an answer, but as ever, I’m extremely grateful that she is verbal. The “guess the trigger” game would be extremely difficult were she not.
This week’s Small Steps Amazing Achievements linky is over with Jane at @ourlitescapades but you can always link up below as the code synchronises.
Thank you to everyone who linked up last week, they were a pleasure to read, comment on and share, here’s my highlights:
“With the summer comes fewer clothes and potty training! Three little stars have made fantastic progress, with some great tips from their proud mums:
Monkey is making great progress with potty training and @becomingasahm has shared her tips for starting the process.
Another potty training success over at @mrssavageangel and Oscar is doing just fine, in his own time and in in his own way. Well done!
And *high fives* to Jessica, her proud mum (@liquoriceuk) has shared a week of successful sticker-filler potty training and other moments
Flying with preschool or toddler aged children can produce some “aaaaaaargh!” moments, @signwmisssteph has shared some great ideas for making the journey pass a tad easier
I was really impressed with @sarahmo3w ‘s daughter’s training and Park Run finishing time
It’s always a pleasure to read a post from @kiwimumdi and see how her N is doing. He’s coped brilliantly with a series of changes and challenges in her post.
And, getting time away as a couple when you have an SN child can be a rarity, @earlyrisingmum treated her birthday husband to a night out, whilst the children had a successful sleepover.”
Here’s the badge code if you’d like to grab it:
<div align="center"><a href="http://ourlittleescapades.com/small-steps-amazing-achievements/" title=“Our Little Escapades" target="_blank"><img src="http://i1322.photobucket.com/albums/u565/EthansEscapades/Wordpress%20Blog/SmallSteps_zps72385117.jpg" alt=“Our Little Escapades" style="border:none;" /></a></div>
We’re looking forward to reading what your little stars have achieved this week, posts can be old or new and please visit the other posts linked up too.
I knew it, our poor D. She’s been very pale, fragile and tender today. She told me that she feels “strange” but can’t expand on this so far.
The complete and utter negligent conduct of the pharmacy we trusted to look after her repeat injection prescriptions is manifesting itself in all those symptoms that her injection is meant to prevent. What a way to end the last week or so of her holidays.
As per yesterday, she’s been cuddly and needing me. Which I don’t mind, obviously, that’s what I’m here for, but it makes me SO mad that this could all have been prevented, especially after they mucked up last month too. Perhaps because she’s SN, it’s not a priority for them. I need to add in that obviously there are very poorly people around and their needs must come first, but when you put your trust in someone to do a repeat prescription, it’s meant to happen. And the least they can do is either tell the parent it hadn’t happened so they (parent) then can sort it, or at least answer the blooming phone when they (parent) try to phone to check!
Anyway. Thank goodness it’s the holidays or she’d be missing school, she might still miss the first few days, I’ve got no idea how long she’ll be like this.
T, our T, is a funny little thing. He’s had a major growth spurt this holiday, but refusing to wear anything next size up because it was too big last summer. He’s been affected by his football team disbanding, hopefully the try-out training sessions later on in the week will boost his morale and get that little smile back on his face.
We’ll see, for them both.
You’d be forgiven for thinking D was way beyond her years today, about 70 or so!
It’s been one of those days that I remember from my school holidays, with the constant and heavy rain, a day when you’re just glad to be indoors but wishing that the sun would reappear because it is August after all!
The weather has effected D today, she’s chosen clothes more suited to late autumn, asked for one of my big scarves to wrap around her and then this afternoon, had a blanket on her knees too. She just needed some balls of wool next to her and the fast forward to an octogenarian would have been complete (no offence to any octogenarians reading this).
There’s been a couple of developments with regard to T’s football today (his team has unfortunately disbanded), one is to go along to a training session with a team that a lot of his school friends go to and the other is to stay within the current club, join a lower team and then move within the club if an opportunity arises.
I can see both positives and negatives for the first option – on the one hand he will know some other team members, but on the other, he does tend to compartmentalise school friends and football friends into exactly that. He has no interest in seeing his school friends outside school, similarly football. I’m not sure if the two “compartments” would merge satisfactorily. There is also the issue that he’s understandably demoralised after recent events and it might be challenging for him to explain why he’s there, together with the fact it’s at a different venue, with a change of coaching staff. We’ll see.
There are times when T and D bicker like Tom and Jerry, it’s just one of those things, not necessarily connected with their autism, it’s part of being a sibling. Biff, bash, bosh!
Today it was reinforced to me that whilst T may find D a bit of an annoyance at times (the variances in their emotional and intellectual levels play a part), she doesn’t “get” sarcasm, T thrives on it and they are both growing up, expanding on those developing personalities but he still loves her and cares.
It concerned Minecraft (what else). We have a few stipulations regarding either of them playing on multiplayer on the PC, the computer is situated so that we can all see the screen (it is always, on our desk) and that they can only be on multi player if Hubbie or I are in the room. The broadband also has filters, which have parental controls on there (which are very effective) and their devices are set to ParentKit. They mainly watch Minecraft videos and have apps that they like to play, but it’s usually the same videos (with their very familiar starts) over and over again.
This afternoon I decided to give the plants in the front garden a bit of a cut, Hubbie was in the living room with D, as was T.
Suddenly she appeared in the front garden and said “another player asked me how old I was, I didn’t tell him because I know you’re not meant to say your age or name or address. T went on and told him to scram”.
Immense understandable relief that a) D recognised that that wasn’t an appropriate question and b) her brother acted very quickly and was probably politer than her dad would have been.
I felt guilty that I wasn’t in the room, oh I can feel guilty about anything and everything if I put my mind to it! But I’m extremely proud of D for taking on board those really quite vital PC community rules and that T stepped up, as her big brother.
T and D and cinemas really don’t mix well, there’s the need for T to know absolutely everything about the timetable, the fact that both he and D become anxious about having to sit next to or near strangers (with T there’s an element of annoyance too) and that if either of them don’t engage with the film, they want to leave immediately.
There are autism-friendly showing of films, but our local (well, it’s a train ride and a walk away) cinema doesn’t offer them.
We were given a gift card at Christmas for the cinema, sufficient enough for the four of us all go mid-week twice. It was a lovely thoughtful gift, but then my children aren’t the easiest to buy for, they don’t “play” with toys and have very specific likes and dislikes.
I’d hoped we could head off this summer to either see “Inside Out” or “The Minions”, we haven’t got there yet. Neither seem keen (despite the fact they both howl with laughter at Minions) and I’ve since discovered that when booking online with a card (gift, debit or otherwise), you have absolutely no say about where your seats would be, it’s all decided by cinema staff in advance. So, definitely not ideal. Our chosen position would always be near the front and away from others, in case a quick exit is needed, there’s no back row for us.
So, we’ve had our kind of cinema today, not without it’s incidents.
The plan was to watch “Home”, something they were both looking forward to, in fact D hunted this down eagerly in the supermarket during one of our girlie town trips. The disc in the picture is an inflatable frisbee that came with it and that’s fun in itself!
The scene was set: curtains drawn; popcorn in bowls, places on the sofa and Bunny to hand (as ever). The disc started to play and then the anxieties started for D. She didn’t know if she’d like the film, despite the fact she’d loved to point out the posters on the buses, happily chose the DVD and had kept telling me that the character which looked like a guinea pig wasn’t, it was a cat called “Pig”. We had some unsuccessful gentle negotiation and after ten minutes I admitted peaceful defeat and went to turn it off. She then got very curious about what would happen next in the film, but was still adamant she didn’t want to watch anymore.
She choose an old favourite “Cloudy With A Chance Of Meatballs 2″ and the calm status quo returned. Imagine the above scenario in a cinema, near to strangers and you get an idea of how it is.
So, we’ve had our cinema, albeit not the one originally planned but that’s how we roll. Expect the unexpected is never truer. Maybe next time we’ll get a bit further in than ten minutes, maybe I’ll have to watch it through myself so that I can tell her that it’s all okay and there are funny bits (I presume there are). A cat called “Pig” is enough to make you assume so, isn’t it?
As for the giftcard, perhaps I’ll phone them, see if there is anyway around not knowing where we’d sit (if we got there), spread a bit of autism awareness.
As one supermarket says “every little helps”, it certainly does with a disability that isn’t physical, an invisible one. Autism.
Regular readers of my blogs will be aware that we do a weekly “best, worst and funniest bits” over Friday tea time.
After the extremely stressful week we’ve had this week (that’s Hubbie and I), we elected not to do any “worst bits” as they’d be fairly obvious and it wasn’t worth mulling over them again. For one issue especially, it’s preferable that D is blissfully unaware, until she needs to be, that is.
As a result, we had a nice, relaxed tea. It probably suited D and T better, because they weren’t then re-living whatever may have upset them (which usually makes D sad). Might be something to bear in mind for the future.
We’ve been trying to see a way forward for T football-wise too and putting out some feelers. It’s unfortunate timing with only eleven days until the signing on for a team process closes and, as we’ve spent the last six weeks trying to sort the team as a whole, it’s time to focus solely on T. Football is extremely important to him after all.
It would be nice to think that, by this time next week, we’ve managed to find a place for T somewhere and that we’ve received a formal apology for D’s medication issue, onwards and upwards, I hope.
Gosh, I need some positivity today, it’s been a roller coaster week. I’m usually a “glass half full” gal but the fact that T’s football team – despite our sterling efforts – will more than likely disband and that D has been very badly let down by our local pharmacy and we feel that they have been so negligent that we have filed a complaint to the Pharmacy Regulator, it’s been quite a few days.
And…..Hubbie elected to bring me home a Costa (massimo decaf skinny) mocha today and ….they’re closed for refurbishment. Great timing or what?!? I know that is minor compared to everything else but it could have been the proverbial straw that broke my (or it is a camel? I could never get that one right) back.
Onwards though! My word for this week is:
1. It’s that time of the summer holidays when I start to think “back to school”, in terms of uniform. I could have sorted this earlier (someone I know did hers in June), but I’m glad I didn’t because T has had an almighty growth spurt this summer! Height, girth, feet, everything!
D is far easier to prepare for, because she doesn’t wear uniform. She will just need some new trainers, with Velcro.
I’m sure the month or so leading up to the holidays didn’t whizz by this fast!
2. D and I had another girlie shopping trip this week, which was really nice. We didn’t see a vintage Rolls in the bank this time but town seemed slightly less busy and she coped better this week.
We had our “ooohs and coos” at various glittery, sparkly things and she was great fun to be with.
We’re five miles away from town and the Reading festival so it will get markedly busier by the end of the month and the bank holiday weekend. A time when the stores focus seems to switch to bread, beers and wellie boots and there are festival goers everywhere and tons of extra security around the shops. It brings in revenue for the town and surrounding area but makes it somewhere to avoid, unless absolutely necessary.
3. I do have a “thing” for Phase Eight dresses, especially ones in their signature tapework style. They are waaaaaaay out of my budget but I discovered this week that there’s quite a market on eBay. It seems a bit sad that people seem to buy a lovely outfit for a special occasion (wedding etc, if it was me, I’d want to keep it) and then eBay it afterwards, but it means that there’s some lovely items around.
This was a bargain!
A happy end to a really quite challenging week, how’s yours been?