It struck me today that, despite their very similar autistic traits, T and D have differing ways to wind down.
For T (usually) it’s being on-the-go, bouncing on his heels as he plays a FIFA game or playing Minecraft whilst listening to Minecraft videos on headphones, almost as if he can separate his brain into two parts, each dealing with the differing activity.
I say “usually” because he’s still poorly and pale. Like I’ve mentioned before, he doesn’t get ill very often but when he does, it completely floors him.
D relaxes by reading – something I’m so proud she enjoys – her current favourites are “The Worst Witch” series and drawing.
The above was something that took her quite a while and heaps of concentration today, using quite stinky Sharpie pens! There’s a pot of gold under her rainbow and she added in two four-leaved clovers too.
For Hubbie, it’s football. Either watching from a touchline, getting drenched or his favourite team on the tv. Bless him, he’ll commentate away from the sofa, that’s years of watching football and coaching for you.
And me. Well, if the children are at school, it’s either music or being sociable over a coffee or..
Different strokes for different folks, as they say.
I don’t think I’ve looked forward to a half term quite as much as this week, I’ve found it very tough.
Not just because T has been so ill, I’ve been grateful that I can be around at home for him, although it’s felt like he’s needed a service bell at times, it’s been the repercussions for D.
Every day has meant a change to routine for her and she’s said virtually every morning “I suppose T has another day off and started his half term early”, she’s been very unempathetic and envious. It’s been difficult.
In the afternoon – apart from the one day she’d won her medal – she’s whizzed past us, stony-faced and not even meeting our eyes before bolting around the corner outside (thankfully she goes no further) and huddles up, waiting to get home. And then she’ll see T, remember he’s been off and get annoyed again.
It certainly hasn’t been easy. So….the chance of a break from school runs and some 1:1 time will be very welcome.
That’s our ill, pale T. Sleeping when he can on the sofa because the absolutely vicious flu bug that he’s picked up has chewed him up and not yet let go. He’s been ill since last Friday and this is how he’s been for most of this week, when not coughing/vomiting.
That red plastic box next to him has been carted around with him this week, it’s been a case of “have vom box, will travel” and it hasn’t been needed for a couple of days but T still needs it close by, just in case.
Because he’s been so poorly, he’s now reached the stage where he’s afraid to eat in case (well.. you know) and hopefully this stage won’t last too long because he gets skinny quickly.
No surprises then that my word for this week is:
But I’m grateful for a few things too:
1. Being there
I’ve been able to be at home with him. Ironically I started looking online for a school hours job this week (without much success) but this week has taught me that when my family needs me, I have to be there. Whether it’s hospital with D, time off with T or Hubbie needing a chat, if I do find something, it needs to be flexible. Hmm…
2. A medal
D won another medal this week, her team from school came first in a Boccia tournament. It’s no mean feat considering her team was obviously all SN players and they were in an unfamiliar location against strangers. Very proud.
3. Everything else!
This week has been challenging. We’re all tired and I haven’t had much motivation to get things done. Thank goodness it’s half term next week and maybe T will start to feel better. My work-in-progress crochet blanket definitely helps me wind down a bit, it’s getting larger by the day!
I feel a bit mean taking that first picture but, in the future, he’s going to want to fester in his room when poorly and definitely not want his parents fussing around him so I’m feeling needed whilst I can!
This also made me giggle, from the Sainsburys website and no, I haven’t ordered it:
How’s your week been?
It’s been a strange day today, a complete contrast to yesterday – when D brought home her medal for Boccia.
Today there was no smile as she came down the stairs this afternoon, in fact she didn’t acknowledge us at school but walked out quickly and then sped around into a corner of the school grounds and huddled herself into a ball. Not good indicators of her day.
She hasn’t wanted to answer prompts either and things didn’t improve after T – who is definitely looking a bit brighter today – told her she was “stroppy”. Oh the wisdom of big brothers!
I still don’t know what happened today at school, there’s no indication in her diary and she still doesn’t want to talk about it.
I could try and ask her tomorrow morning but, I then run the risk that she’ll relive whatever it was and that will make tomorrow not go brilliantly. I have to assume that, whatever it was, wasn’t too serious (although it may currently feel that way to D) don’t I?
Obviously I am very lucky that D is verbal and usually does communicate, eventually. When I talk to other parents and they mention that there’s hardly ever anything in their non-verbal child’s diary, it does make me wonder how they would find out about their day. I’m grateful (very) that we usually can.
Another day tomorrow, a better one I hope.
(It probably says a bit about how “aargh” I’m feeling at the moment in that I scheduled this post last night on a blog I haven’t used for 3 years…and then couldn’t find it….anyway)
Today didn’t start fantastically well with D overwrought and refusing to say goodbye or wave (something she always does) at the top of the stairs as she headed to class.
She was over anxious because she was going to a Boccia tournament with school. It was being held offsite and competing against five other schools – quite a lot for her to get worried about.
I didn’t know what Boccia was until D went along for her first game a couple of years ago, it’s this:
“Boccia is a disability sport that tests muscle control and accuracy. Players propel balls to land close to a target ball.
Two sides compete as individuals, pairs or as a team of three over a set number of ends. Each side has six balls (red or blue) each end to try and score points. Points are accumulated over the course of a match to find a winner.
Sounds simple? It is to get started, but the tactics of the sport offer both tension and excitement as the game plays put.
A ball can be rolled, thrown or kicked. If a player is unable to throw or kick the ball, they can use a ramp. If players are unable to release the ball with their hands, they can use assistive devices – head/hand pointer.”
Sounds good, doesn’t it? In the tournament I was able to go to a while back (generally parents aren’t invited but this was in a leisure centre near school), it did seem a nicely gentle game, apart from the competitive element and the fact that D would be sitting with strangers as the pairs waited to have their go.
And have a go she did. In fact our girl practically sailed down the stairs this afternoon, beaming away and wearing this:
A bronze medal! It’s a really lovely heavy medal too, with fab detail on the back.
She does struggle with the competitive element and so it was fab to see that the team had been rewarded for what must have been a challenge for them all.
A great contrast to a not fantastic start today and, additionally, T seems to be turning a corner with this vicious bug that’s had him in its grasp for a few days. Hurrah!
Welcome to this week’s Small Steps Amazing Achievements, as Jane at @OurLitEscapades and I co-host fortnightly, this week it’s my turn.
Thank you to everyone who linked up last week, we enjoyed reading your posts.
If this is your first time reading this, you can find out about the Small Steps Amazing Achievements linky here, we do hope you join in. Posts can be old or new and please don’t forget to visit and comment on other posts too.
Here’s the badge code if you’d like to grab it:
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Jane and I enjoy reading and commenting on your posts and sharing them via the #SSAmazingAchievements hashtag.
Here’s Jane’s highlights from last week:
“I love this post about speech from @mrssavageangel I think the whole family has been on a journey
@rainbowsaretoo shares what life would be without an ASD diagnosis
and @animperfectmum shares her thoughts on ABA and the fact that there is no cure for autism
And finally we must wish this little lady a Happy 3rd Birthday at @susankmann”
We always find it difficult to choose a few to highlight as the posts linked up are always so wonderfully varied, but you can read them all here.
My post I scheduled earlier seems to have disappeared but here’s the jiste:
D brought home a Boccia medal today, no mean feat as not only where the pupils in the team attending an off site event, but there would also be five other schools competing and that brings its own challenges and anxieties for D.
But they took part and came third! Fantastic. She simply could not wait to get down those stairs and tell us about it at the end of the day.
The medal is lovely and chunky too. A great conversation prompt and a reminder for her.
And T seems to have turned a corner with his germ fest, he’s not well enough to go back to school yet but his haunted vampire-like paleness is diminishing. Good news.
Poor T still isn’t well. I’ll say this about our boy that – just like everything else he approaches – he goes for it big time.
Same as how he plays football, or Minecraft or a project, T doesn’t have a little niggly bug, it’s a full blown de-stabilising knock-you-sideways affair. And that’s how it’s been today. When T’s ill, he gets skinny very quickly as he just doesn’t want to eat, so doesn’t, his varying sensory issues around food mean choosing substitutes are extremely limited.
We’d said to D to be aware that T wasn’t well, that he needed to sleep and could she be quiet. Well, her interpretation of this was to stomp away angrily and force her door closed, because she knew she had to be quieter. Kind of empathy, albeit in a noisy kind of way.
Get well soon T.
Usually, if I’m tackling something that’s likely to cause change at home, I’ll do it when T and D are at school. It’s easier for them, they generally appreciate the end result but don’t like all the hustle and bustle of furniture being moved and things generally being out of place.
For example, if it’s time to decorate the Christmas tree, I’ll bring everything down from the loft, get the tree in place and the lights on and then they’ll help with the decorations because that’s a relatively achievable end game for them and they can see that it won’t take too long.
Today, though, Hubbie and I decided to tackle D’s room, no mean feat as she is an absolute magpie for collecting various bits and pieces and then hoarding them. Not ideal for D as she got extremely stressed and told me there was “too much change” but, we hoped, by attempting to engage her (that didn’t really work), she’d appreciate the end result.
And she has. Here’s her chair (she has a snuggly cuddle chair) with Bunny, D dolly, Mumma dolly and Coral the dolphin.
They all look cosy, don’t they? D’s enjoyed reading in her chair, which is great.
She seems very happy with the results of today’s change and move-around which more than makes up for the emotional highs and lows of earlier.
That would be T today, pale and poorly.
He’s a bit like me in that he’ll keep going (and going and going) and you only know he’s not feeling brilliant when it’s very apparent that he isn’t. You know he’s definitely not well too when medicine is received without too much protest.
He’s tired too, school – as they gear up for options choosing – has been intense with lots of focus on homework and school work. That and this generous bug is wearing him out.
He wasn’t that fussed that he wasn’t well enough to play today (and his team did play and lost their game), normally he’d be well up for the team element, especially with the fact that he hasn’t played competitively for ages (due to waterlogged/frozen pitches alternately).
Get well soon little man. Half term is still a week away, it needs to hurry up.