We’d didn’t quite get our “girlie day, D and I. More like a “girlie” three hours or so until T came back from his football game.
A game which he was quite frustrated about as he’d been fouled (it happens) but unfortunately the referee didn’t act on it and his team ended up losing on penalties – which is a bit of a harsh way to lose in a cup game me’thinks.
So he wasn’t happy. Decidedly unhappy. Which, emotionally, can be a tad contagious in our house.
It’s felt a bit like this again:
Juggling the emotions and variants.
Another day tomorrow, hopefully a calmer one.
Below is a message from Cerebra which I received and wanted to share.
We’ve had two experiences on going through the diagnosis experience for our children, one down the pediatric route (D) and one via CAMHS (T), one was considerably less stress-free and speedier than the other but this was probably due to the fact that T was older, verbal and we already had a diagnosis within the family.
If you have a few moments and either have or are waiting for a neurological diagnosis (UK only), it would help Cerebra if you could complete the survey.
Email from Cerebra:
Through extensive research at Cerebra we have identified that a delay in getting a diagnosis of your child’s condition can be a problem and that these delays can impact on the well-being of the child and/or his or her family. We’d like to find out more about the experiences of families in gaining a diagnosis for their child or children and we would be grateful if you could complete a short survey for us that will only take between 2-5 minutes to complete. The survey is open to parents and carers of children with a neurological condition who either have or are waiting for a diagnosis for their child and where the diagnosis is based in the UK. If you ‘fit the bill’ the please click on the following link and take part in this important survey:
Your help in this piece of research will prove invaluable and will form the basis of further work that is planned with our Legal Entitlements Research Project at Cardiff Law School and as a presentation at a series of seminars in Birmingham and Cardiff run by Professor Luke Clements.
If you have any issues in completing the survey then please do not hesitate to contact me (Beverley) Also if you know of any other people that would be interested in doing the survey, then please feel free to share the above link.
Team Leader – Research and Education
Today saw the return of anxieties big-time for D.
They’re normally just burbling away under the surface – a bit like an egg boiling in a saucepan – quietly simmering until …. angst takes over (a bit like turning the gas up) and bam! They’ve arrived!
They were two-fold today as well. The class were heading out on a supermarket trip, to get ingredients for their cooking lesson. D got very upset because the whole class had been told yesterday that if anyone misbehaved or was late, they’d be “left behind to do hard work”. Naturally neither of these anti-incentives appealed to D and, despite the fact she wasn’t going to be late, she was worried big-time.
There was also another element in that she has a flute lesson after cooking and was worried also that she wouldn’t be back in time for it.
She wasn’t happy going up the stairs and it was a muted wave at the top.
Fast forward (and it was from my viewpoint) to home time and she was visibly agitated as she came down the stairs and attempted a bolt towards the doors.
Yep, they’d got back in time but she’d felt rushed and didn’t enjoy cooking, but did enjoy her flute lesson – I guess it was calming for her.
Once we were home and she’d relaxed, our D who looked forward to Friday teatime was back. Phew!
I gave her the option of watching T’s football tomorrow and needless to say, we’re having a girlie day! She deserves it after a very busy time last weekend and her ear problems. I will too.
One word to sum up our week has been easy-peesy lemon-squeezy this week.
Normally I’ll “umm” and “aaah”, considering the roller coaster of emotions that hit every week as our children navigate their way through, in fact every week could be described as a “challenge” for them.
This week it especially applies and mostly in a good way (the R2BC bit) and here’s why:
Ha! You may be thinking and ha! again. Is J okay? It’s no secret that the “beautiful game” is very much part of our household, always has been, always will be.
What I didn’t expect though, was to volunteer my admin-y services to the local team and actually be enjoying it as much as I am.
Last weekend was mega busy, with something on both days, Sunday was an all-day promotional event and it was a long day but good fun.
This time last year or even six months ago, if you had said “yes J, you’ll be doing this and talking football with Hubbie tons”, I’d have laughed! I’m no “look at me with jazz hands”, which is fine by me so I was pleased that I put myself out there – so to speak.
2. Cricket with a gemstone twist
D does not look forward to PE at school at the moment, it’s either cricket or football and she gets very nervous about both the contact element of the game and that it’s very fast-paced.
After this week’s lessons though, she greeted me with smiles at the end of the day. Why? They’d played “diamond cricket” and, as she told me, she does like all things connected with gemstones. The fact that it was named after one made her enjoy it more than she thought, which is great.
She’s also been very brave this week, coping with an achy ear and suddenly feeling much happier once it “popped” – thank goodness as she’s not great with unexpected aches.
3. When an interview isn’t
I headed off to what I thought would be an interview for a seasonal job this week, having taken the psychological online scenarios tests first. I’d hoped there would be face to face interviews but it turned out to be a group assessment and then an individual written assessment, no interview scenarios at all.
Normally I’d have tied myself up in internal knots but not this time. How did I do? No idea. I don’t know if I contributed enough in the group scenario. Time will tell. It was a challenge but not necessarily one I’d expected.
4. Beat the weather!
There always comes a time of year when Hubbie’s busy work diary is overflowing. We’ve reached that time. A dismal and wet August and part of September meant that his outside work has been delayed and this is impacting on inside work booked in. Juggle time and hopefully everyone will be happy and bear with him.
5. Second will do
I usually join in with a workweek hustle on Fitbit, it’s good fun and motivational.
Last week (in the run up to a busy weekend) I felt too stressed to join in and knew I wouldn’t have time to cheer others on, so I didn’t join in.
This week I’m aiming for second, next week who knows?
Challenges when you stretch yourself can be beneficial, it’s certainly been the case this week, how’s yours been?
For the last few days, D has had a poorly ear and been in pain.
She’s never a fan of Calpol, in fact it can take two of us to get her to take 5ml or so of something that she detests, in terms of taste (doesn’t like strawberries) and that strange powdery texture.
So, I knew that when she begrudgingly agreed to some, it must have been hurting.
But where? My squirmy girl doesn’t like being poked and prodded at the best of times and she knew it hurt, but couldn’t be entirely sure where.
The past few days have been tricky, she hasn’t heard the gentle requests or conversation that she responds best to and a raised tone alarms her….. there have been emotional times.
Bless her, she couldn’t even hear our meowy fluffball Bitsey demanding attention!
But all that changed this morning, we were walking to school and her ear “popped” and all was well again. D’s smile returned and we could chat about the birds singing (she said they sounded happy) and the things we usually point out.
I’m grateful it popped by itself as we’ve tried the “hold your nose and puff” before and she just didn’t have the co-ordination to do that.
It was good to see her smiling again (picture taken previously).
A relief. She dislikes the noise and bustle of our doctor’s surgery (not to mention her stranger anxiety) and has memories of the last time she was there, of a nurse chasing her around to give her her injection. It does feel – just like an earlier comment – that we, as carers, have to be medical detectives but that’s preferable and it keeps her (relatively) calm.
D had had anxieties about today’s PE lesson (cricket) but was full of enthusiasm about it afterwards as they’d played “diamond cricket” and that went down very well with a girl who likes any kind of glittery/gem stone talk.
Yay for a good day and that painful ear popping!
Welcome to this week’s Small Steps Amazing Achievements, as Jane at @OurLitEscapades and I co-host fortnightly, this week it’s my turn.
I can’t quite believe it’s the last day in September, I was in John Lewis yesterday for an assessment for a seasonal vacancy and the (ssh) Christmas decorations were out on display!
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 are Jane’s highlights from last week:
There was a positive trip to the dentist for Sir, @earlyrisingmum shares this here
A little lady is making progress with her speech with @allpastmidnight
and lastly @animperfectmum shared some fantastic advice for parents of children newly diagnosed with Autism”
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.
We can’t wait to read what your children have achieved this week.
I’d do anything for T and D, within reason of course.
Feel my inner lioness roar at that person who stares and mutters about “badly behaved children” if D is overwhelmed by sensory issues in a busy, public place? You betcha!
And battle what seems like ones which can’t be won when it comes to trying to obtain access to the services that would enable them to develop? Yep. That’s me. It’s part and parcel of parenting, attempting to make others see them as not just a budget figure but individuals, whether it be educational or leisure-related.
But sometimes something chips beneath that tough exterior I’ve formulated for myself and today that happened, it surprised me as to what it was.
The OCD aspect got to me today. The need that both T and D have to perform a task over and over (and over) again. Poor D still has her sensitive ear so any activities from her direction have been louder than usual. Which upsets T, who reprimands D, who reacts …. you get the picture.
It made me want to find somewhere quiet (maybe in with the guinea pigs?), to just regroup a bit but then the routine that they need and crave still has to happen – or there would be more repercussions than my hiding with the piggies for sure.
Today is a “blog it out” post, tomorrow will be a more settled one, for sure.
I’ve had guilty mum syndrome today, in bucket loads.
Why? Well, D woke up with earache in one ear today. It could be down to a number of things – it was quite breezy on the fun day field yesterday or maybe she’d slept awkwardly on it or perhaps it was a spot or something – but her temperature was fine and I concluded that she should be okay at school.
It’s so difficult to ascertain with her any symptoms, quite often the achy bit isn’t where she originally thinks and things which you’d think would hurt, don’t and vice versa. For example, a slight fall can cause distress for hours but other times, she’ll brush something off whilst I think “ouchie, that surely must have hurt”.
Anyway, off she poodled and I said to her “if it hurts too much, get xxx to phone me” and also wrote in her home-school diary.
Did that comment get acknowledged? No. Was anything written about her day? No. Maybe it’s the “no news is good news” scenario but I sometimes wonder if the diaries are even read?
Luckily she is feeling more positive tonight but this is where, once more, that I’m so thankful she is verbal. So grateful.
She was telling me on the way home that they’d gone into the sensory room today and heard a version of an air-raid siren. The topic for this term is WW2. I’m so pleased that this topic is being covered, albeit I’m sure in an extremely-watered down way. D’s great grandparents didn’t live to meet her or T and they didn’t really want to talk about WW2 and their experiences, understandably. It’s a part of history that may seem long ago, but for many it had far-reaching consequences.
Whenever T and I have RE or war-related discussions (which we do, he’s a bright, knowledge-seeking little man), I tell him that, in the majority of cases, it’s about what different people believe about religion and how strongly they feel they personally should act. He understands this but it’s hard to justify acts sometimes, even from a “grown up” viewpoint.
Which leads me nicely into a Music Monday, I make no apologies for the fact it’s an Ultravox song, from their 2012 album Brilliant.
The vocal range is amazing in the chorus lines of this song, it’s a song that I will attempt to sing along to when I know no-one’s listening. The drumming is very “tap along to” too.
“With a smile and subterfuge, you dance your savage dance
Some hidden cause you cannot justify, A lie’s a lie
Couldn’t you let it lie?
Couldn’t you let it lie?
Conscience clear and sanctified, You wash your sins away
In God’s name you start your holy war, Who’s it for?”
The last two lines are so powerful, from a lyrical viewpoint.
A great song with a purpose.
Today has been unbelievably out of routine for D, big time.
No relaxing at home, but a day spent on a field in a tent/outside the tent/batting a balloon around/feeling scared because there were people around.
She was happy (because the ice cream van that sits outside her school was there), she was scared (when over-enthusiastic footballs got too close), she was cross (when it wasn’t time to go home yet) and she was anxious (when people ventured near her little “nesting” area she’d made).
T was in his element, a sporty fun day with a chance to run around and also kick a ball with his team mate to see who scored the fastest goal? Absolutely!
But there are two things I’m proudest of all:
T for walking home by himself (yes, he walks to his bus stop in the mornings but this was out of the ordinary)
D for using a public toilet. Usually she doesn’t, not liking the smells and sounds or the fact there is a hand dryer in sight. But today she did and as she was there from 9-4pm, it was a good job too! There was a hand dryer in there but she sensibly stood well away from “Noisy” as she calls them. It would have been a different matter if someone else had come in at the same time and used the dryer – there would have undoubtedly been a bolt but the fact she went in, is a pretty big achievement.
There’s definitely no place like home though, as she told me during a cuddle when we got back.
D encountered a familiar setting today but with a heap of new experiences. She managed to tolerate most of it with the aid of her little pop-up tent, her little enclosure.
It managed to serve the purpose of making her feel secure, enabling her to “zone out” away from the noises of strangers, the tent seemed to prevent her from being worried about footballs flying around here, there and everywhere too.
The setting was the local field, somewhere we go to fly kites and have picnics. Today though, it was taken over by football, pitches marked out, goals up and people, lots of people. An opportunity for me to put names to faces in my Comms work with the local club, which was good.
And I got a chance to watch T play too, he’s growing in confidence within the new team and scored their sides only goal today. They played on a full-size pitch so it was rather a tired T after the game!
As my (workmate and then) future sister-in-law said to me when Hubbie and I first started seeing each other “you have to like sport!”, I wouldn’t go as far as actively turning over to Sky Sports in favour of Poirot or Downton, but it’s definitely interesting.
More challenges on the way for D tomorrow, let’s hope she copes as well as today.