I know, I said I’d double-up tonight but, truth be told, I’ve pushed my post-op feet a bit too much today and they hurt, big time!
It was D’s Annual Review today and I don’t want to rush my thoughts from it. Nor do I want to be unfocused due to my tootsies.
A “to be continued”.
I’ve been at a meeting tonight so it’s more of a record of where Rob the Robin was today:
And today’s advent chocolate:
A day in which D’s school bus – despite being a five minute journey – was half an hour late, which kind of made things a bit out-of-routine later.
More tomorrow 😀
It’s been a day of attempting to get organised with regard to an upcoming event, one that is causing me some concern.
It’s not D’s Annual Review, although that is this week but:
School Trip. A residential week-long school trip for T, happening at the end of January and as part of his PE GCSE course.
It’s not cheap (they never are, are they?) and it will be his first residential school trip, ever. There was a primary school year 6 trip which he got enthusiastic about and then very anxious about so, the fact he wants to go on this is an achievement in itself.
But, I have concerns:
Food. Argh! T has a very limited diet, no “wet” food and very little “hot” (as in warm foot), in fact it’s one “hot” meal that he’ll eat and the remaining time it’s bread/toast/rolls. He eats yoghurt, cake, crisps, muller rice, blueberries and that’s about it. A multi vitamin daily. Don’t judge, believe me we’ve tried, tried the “you won’t have anything else until that plate is clear”, tried the “wheeee, here comes the airplane”, done the “it’s good for you, will give you energy” all to no avail. T is studying nutrition as part of his course, he knows that pasta/potatoes/protein/vitamins and minerals all contribute towards a happy and healthy body but his sensory issues mean that he just can’t eat those foods.
So, that’s a concern. The course sounds very energetic, so he’s going to have to fuel-up to be able to join in. The “dietary requirements” section of the form was quite full, once completed!
And then there’s Sleep. T has a dose of melatonin at night. I’d rather he didn’t take this with him as it will single him out from his peers, I’m hoping the very energetic days will absolutely wear him out instead. I would imagine that sharing a room with his classmates will mean that sleep times will be quite late anyway!
But, as a positive, he’ll be mixing with his classmates who he only sees inside school (he very much compartmentalises school/football acquaintances) and he’s not able to take any gadgetry with him so his headphones will have a week off. I guess our food (bread/crisps) bill for the week will decrease quite a bit too.
I’m hoping that he’ll come home tired but having enjoyed it, no doubt in need of a good bath and with plenty of washing but having mixed, joined in and learnt that – maybe – those headphones don’t need to be on all the time. A smidgen of a bit more desire to try those foods he currently can’t bring himself to try would be good too, excellent in fact.
Advent choc today:
I’ve already shared this picture on my Facebook wall but it was too lovely not to mention here too:
Taken at D’s school Christmas fair today, it shows our lovely D just after a chat with FC, she got a bit agitated in the queue beforehand (imagine a queue of SN children with their parents, wanting to go in but feeling anxious about it), but once in, she was fine.
FC had a few questions for her, along the lines of “did we have a chimney? Any pets that he should be aware of and will you be leaving out a snack as it will be a long night?” and she happily answered, lovely to see and hear.
She joined in with activities on a couple of stalls, said “hello” to pupils and teachers she saw and, after a pit-stop away from busy areas with a book, was generally very smiley.
A win for me too because – aided by my stick – I walked to school for the first time in nearly eight week and home again (feet have told me off since), it was a case of “let’s do this because I want/need to”, to walk through the woods, to watch D skipping ahead, to help her find stones to skim the icy lake with and – importantly – to reinforce in her mind that we’ll be doing walking school runs again in January, as we only have home-school transport until the end of term.
Another win was D telling people – including FC – that our Elf (Glitter) is away helping at the North Pole so Rob the Robin is with us, proof that she’s okay with this change (which is a relief as I still have absolutely no idea where I’d put her “safely” last year!).
(Rob settled in our giant daisies in the hall today, teddy was the advent choc)
Wheee! Another Friday gone, the weeks are whizzing by, aren’t they? But it’s all good and this week we’ve made some definite progress, my word for the week.
Monday saw me take my first trip into town since my operation, it was a sort of experiment for me, to see how I’d cope. I knew I’d be walking slowly and timed it so that I wasn’t in shops at lunchtime, but it was an experience!
I’ve progressed from a crutch to a walking stick (on the right) and it was strange, I’ve always been aware of being out with a child (or children) with an “invisible disability” and people don’t take notice until something happens – sensory overload or flapping. But by me having a stick or crutch and especially with the tap-tap-tap as it goes along, people notice and move to accommodate me. It’s an eye-opener in terms of the fact I didn’t think people would notice and happily adjust, but they do.
So, that’s progress for me. Moving around more, I’ve been out three times this week during the day and it’s worth the inevitable aches. Shows I’m getting better.
Progress in a different way as I discovered – sssh! – I’ve lost our Elf, somewhere! Glitter has been replaced temporarily by Rob the Robin (from Waitrose) and D absolutely loves it!
More progress in that I finally asked for help with the comment luv/commenting issue on the blog. I’m not technical and resented the fact I couldn’t sort it, so left it for a while, as you do. @MaFT got it sorted very quickly today and this means i can re-start my wellbeing bits and pieces, yay! The lesson from this is …ask, there is always someone willing to help.
Next week will see another trip to town where I’ll hopefully be able to choose some review boots for my new-sized feet and a blood test for some really yucky tablets I’ve started on for my nails. Yuck is an understatement but if they work, fantastic! It will also be D’s annual review meeting so I’m looking forward to hearing the school’s views on how she’s doing and providing some input too.
A December post wouldn’t be complete without today’s Advent calendar chocolate:
So, that’s me, how was your week?
Yep, 1st December and what does that mean? It’s advent calendar and Glitter (elf on the shelf time)!
Now, the calendars were easy, albeit a tad stressful as D doesn’t like to feel “rushed” in the morning, nor does she appreciate anything new being added to her routine, even if it is chocolate…so this may be an after-school occurrence, today’s was a:
As for Glitter, I couldn’t find her! Aargh! I guess she was quickly spirited away last Christmas Eve, but where?
And then I thought:
Does D really need one this year?
Well, she’s been talking about Glitter and potential hiding places so, it’s not a case of “needing” but anticipating. Okay, she’s 12 but emotionally and intectually younger and as we had years of her not “getting” Christmas, let’s enjoy her excitement and enthusiasm whilst we can. So, that was that question answered!
And then…what can I get today as an alternative? I wasn’t going to buy another elf because Glitter will appear… sometime.
A robin! D absolutely loves the Waitrose Christmas advert, telling of the little robin battling through to get home for Christmas so, this seemed ideal. This was from Waitrose, who also sell a book inspired by their advert – an idea for a Christmas stocking. They also sell a tiny robin as a tree decoration which is very cute.
Glitter “wrote” a note explaining her absence:
So, a happy D and a relieved Mumma, after a bit of a whereisitthen start to December, a change very well received – phew!
There are times in our life that I just want to hold on to, times that we never anticipated, this is one such moment.
A bit of background, in that D has always struggled with writing, it’s partly a confidence issue, partly the whole positioning and feel of writing – sensory I guess.
It’s made for tense, anxious moments at home when it came to homework and she really does not like “DIY writing” sessions at school. It means that the little notes written in cards have so much emotion behind them, from both the message and the knowledge that it’s all a bit of a challenge for her.
So, can you imagine my absolute delight and “ohmygosh I want to burst with pride” feelings when D told us that she’d started doing some writing, unprompted at the end of certain days at school?
I had to, simply had to, take a couple of pictures:
Do you know what? Even the spelling mistakes make me smile, because that means she’s had a go at unfamiliar words, the joined-up writing because she suddenly decided she wanted to try it out and the illustration – she does love her drawings!
And read this:
It’s another indication that D is maturing, at her own pace and in her own way, which is just how we approach SN parenting. It makes moments like these all the more memorable.
It’s quite rare for D or T to express a specific desire for a Christmas gift.
We fell into the trap in previous years of buying – for example – transformers for T or LaLaLoopsy for D because they’d taken an interest, we’d think “yippee! something that might just be played with” and then, once the packaging is removed, it’s left to gather dust, with no interest shown as the playing aspect just wasn’t there.
I wrote about this, after consulting other SN parents/carers here.
So, since then, Christmas gifts have been very much along the lines of things that would be used – something that’s perfect for D, pens and paper, or for T, football magazines, dressing gowns, that sort of thing. Yes, I know, relatively boring but, let’s fact it, no-one has money to burn, do they?
This year, however, D has made a specific request. It wasn’t a particular surprise, she does rather love watching “The Chase” and has a bit of a crush on Bradders:
We’ve explained to her that it’s a CD of music and she won’t be able to see Bradley singing but she’s adamant, there’s always a massive smile on her face when the advert for the CD is on TV (which is quite a lot at the moment).
So, clickety-click and we’re looking forward to listening to the CD in a few weeks.
Speaking of smiles, how grown up does D look in her school photo?
Absolutely years of her being scared by the whole school photo scenario and having to be prompted to smile with the aid of squeaky accessories have been replaced by a smiling young lady. Unaffected by any thoughts of “ooh I’m going to pout” or “smiling isn’t cool”, she’s comfy in her skin, it’s great.
This week has passed by quickly, bit like this month really (ssh, one month today to Christmas!).
There can only be word to sum up our week today and it’s (imagine me shouting it) HURRAH!
And here’s why:
A massive hurrah that, after I managed to shunt my left foot into the door (not advised six weeks after surgery) that I hadn’t affected the big toe bone’s healing, although it’s mega bruised and I’ll probably lose the nail. Luckily I was booked in for an X-ray and post-op checkup the next day so it could be checked out. Phew!
T had a boost last weekend, receiving the Man of the Match award, he’s struggled with the (lack of) team play element recently in his game so this was welcomed and prompted a rare smile from our lad.
Another hurrah is for D, we had a fab retro reading time on Sunday, with her reading aloud her Enid Blyton book from school. I’m so pleased that the children enjoy reading, they both have their iPad time but it’s got parental control and once the time is up, the books come out.
And this one: home-school diary communication from D’s school can be sparse; I think they rely on D’s memory a lot of the time which – if she’s stressed – doesn’t always work, but today, there was a little couple of sentences around how her confidence has increased, as well as her writing and maths skills.
It also said that D “skipped off” when she was asked to do a task and when I asked D about that and said she must have been happy, she replied “I skip around school because we’re not allowed to run and that makes me quicker”. Her logic makes me smile.
And it’s the weekend (yay).
So, all in all, (forgetting the door-foot incident), it’s been a good week.
A quick mention of a blogging awards specifically for SEN parents, the BAPs, it’s always a challenge for a SEN parent to work out where their blog fits into the blogging arena:
Yes, it’s a parenting blog, but with a definite message, that of raising awareness of an invisible disability, something that can’t always be seen at first glance.
So, if you’d like to follow this link and nominate a SEN blogger, I’m sure they’d appreciate it. Not necessarily me, but I do love the “Promoting Public Perception” category, something I’d hope that my blogs help with, neither T nor D are “rainman”, they’re both very individual children, with their own personalities, who are both on the (vast) autistic spectrum.
Voting closes tonight and thank you for reading Jx