Beware, this might turn into a rant!
I’ve been having to have monthly blood tests to check my liver function as I’m been on some totally yucky tablets for my nails. They work though but, as getting blood out of me is troublesome, it’s not been pleasant.
So, last week I went along and also asked if I could have my iron levels checked as I’d fainted two days before.
The nurse said something along the lines of “it might be your cholesterol, you have high cholestrol” which was news to me as, since my last test for that three years ago, no one had said anything. She then said “the doctor will definitely want to see you, its too high”.
So, blood eventually taken and I’ve worried ever since. Wondering why no one had said anything in the times I’d seen a doctor since, because surely that sort of thing would be flagged up, wouldn’t it, a bit like smear tests?
Fast forward a week and a telephone conversation with a doctor and my cholesterol levels are fine, still the same level as 3 years ago BUT I have a high level of good cholesterol and the doctor is perfectly happy with that.
So that explains why no one mentioned it but why did the nurse take it upon herself to take look at the figure without the other details?
And when I phoned yesterday for the results, on the blood test results line, the person manning the phone could not give me any detail, in fact she gave me a totally different numerical result to the one told by the doctor today!!!
Not wishing to moan about the wonderful service the NHS generally provides but if the nurse had read things properly, I’d have saved myself over a week of worry.
Which would have been gladly avoided cos I have plenty else I can worry my head about!!!
I’ve been blogging a while now, ooh five years I think. At times it’s useful to “blog it out”, clear out some of the thoughts that tumble around in my head.
Thoughts that have remained more or less the same since I started to blog:
Worries about the future. Five years ago, D was nearly 8, you wouldn’t have known it to look at her, the tall bundle of D-ness that she is, she doesn’t look nearly 13 now and that worries me.
I worry that whilst she’s “cushioned” by her SN school, loves participating in anything musical and she’s accepted there, it won’t always be like that.
She’s a tween with autism, soon she’ll be an autistic teen, then a young adult etc. Her autism won’t be cured (forget those quack theories that drift over the Pond from time to time) but what she will learn is coping mechanisms. Ways in which – I hope – that, if she’s out that she masks until she gets home, her sanctuary.
Because, no matter how many posts I and the many many SN bloggers write, she’ll be judged on those first impressions and if that first impression is of a meltdown or one in which she’s pacing to regulate herself, that’s how people will remember her.
It’s scary, from the outside looking in. Because someone might see a young lady who could be easily led, others might see her as someone to avoid or laugh at. I hate those thoughts, hate them.
D seems unaware when people look, something I’m glad about. I’m also relieved that, at nearly 13, she has no body issues, she’s not demanding hair straighteners or make up or daisy dukes, she’s happy in herself. Which is probably a minority thought in today’s “me, me, me” society.
She’s happy in sweatshirts and leggings and her Skechers go walk pumps, something I’m also relieved about as she’s showing no signs of my rubbish feet problems, she has wonderfully straight feet!
Is there an answer to my concerns? There are more programmes with autism mentioned (The “a” word last year and BBC Doctors are very up to speed with regular mental health stories) and I read that a supermarket will be trialing an autism-friendly hour, similarly some cinema chains have autism-friendly showings.
But how about your person in the supemarket? Someone who walks past and “tuts” at the sight of a child with headphones on, overwhelmed by the sights and sounds? In that initial split second judgement are they going to think “autism”? Probably not unless they have had family experience. Nope, they’ll either “tut” or make some comment, usually along the lines of “can’t you keep that child under control? Needs a good slap!”.
We’ve all experienced it and sometimes from unexpected quarters, having your child described as “mad” by a family member sticks with you, it can’t but not.
It can be a lonely world, SN parenting. Birthday invitations – unless from another SN parent – aren’t dolled out and that makes my heart ache. I remember when I was childminding a girl in the same class as D, the birthday child’s parents would pass out the envelopes, making it clear exactly who it was for.
I don’t ask for much – my Hubbie would raise an eyebrow at this, what with my skinny decaf mocha/crochet fixation – but would ask, from the bottom of my heart, that first impressions aren’t always the correct ones.
Get to know D and she is the loveliest sweetest girl, today – when not anxious about the scaled-down half term and routine changes – she’s been so so soppy over Valentine’s Day, eager to see the cards and gifts that her parents exchanged, cuddly, smiley happy as she wished us all (including her brother) a happy Valentine’s Day.
I wish for her – and all our SN children – a happy future, however and wherever it pans out.
It’s funny isn’t it, the little things we find that just keep us going, in times of stress, things that enhance our wellbeing.
Mine used to be chocolate, still is tbh, but it has been replaced by something a bit better for me and that produces a nice end result (you can’t always say that about chocolate, can you!)
Crochet. It amazes me how I can take a hook and a ball of yarn (going all Daily Fail here with a picture):
I had a little smile at crochet group on Tuesday became I was helping a lady in her first attempts at a Virus shawl, I enjoyed it but it reminded me of my very first session where another lady was getting into a pickle over this chart:
I remember looking at the shawl with all its intricacy and thinking “no way, no way am I going to be able to make one of those..” fast forward a year and I’m working on one for a friend’s birthday, my fourth one!!
No surprise then that virus is my word for the week as I have been well and truly nabbed by this particular “infection”.
And, after chatting to a fellow SN parent about her pottery hobby, it’s a lot more portable!
It’s also been a week of strangeness after I had a reaction to a meal, fainted and knocked myself out – as you do! So one of my reasons to be cheerful is that – apart from a bruised face – I’m okay and my other one is..
D’s home-school transport for after my next two (and hopefully) final feet operations has been approved!!!
A mega relief as regular readers may recall it was a heck of a battle with “the powers that be” to get anything sorted out, in fact it wasn’t signed off until two weeks afterwards, meaning any meant-to-be restful time was anything but.
Happy Mumma, happy D! How’s your week been??
Gosh, it feels like ages since I’ve blogged, I’ve had one of my “retreat into myself a bit because there’s too much going on” times.
Being a mum to two very individual but similar-in-traits-at-times SN children requires the ability to second-guess 24/7, add in my two upcoming operations in the next few months and the inevitable upheaval that will cause, as well as the slack period that always occurs for Hubbie after Christmas and you end up with a “swan-like J” (calm on the exterior but splashing around metaphorically underneath). January felt like that, all day everyday and quite a bit of the nights too. Roll on Spring!
So, what’s the deal with the sticker title? I hear you ask.
Well, D’s school had a new head teacher at the start of this term. She has big boots to fill as the previous HT had been there for decades and was very much part of the fixtures and fittings. Someone who knew all the children and their little ways and their parents.
A big change in any school but D’s school worked very hard in ensuring that the pupils were involved in the recruitment process (they submitted questions) and the new HT was in school quite a bit in the previous terms.
The new HT made her mark quite quickly and has settled in well. Approachable too which is a must, isn’t it?
Anyway, today she was in D’s class and D received this:
For her excellent handwriting and “good work”. D could not wait to show us after school.
Such a simple gesture but one that definitely made our girl’s day (and her proud parents!)
Poor D had a bit of a bolt (thankfully) after she came down the stairs today. Her cheeks were still wet with tears as she reached the bottom and then, without eye contact, she bolted into a corner, resisting a hug, refusing to answer questions.
It turned out that she’d been having a go at making a cup of tea today – which is one of her IEP targets for this school year – and was then encouraged to try it. Which she did, apparently, but did like it at all.
Which is fine, neither do I!
Her IEPs are all around confidence building and we’re very proud that she gave it a go but there must have been so much that was unfamiliar to her – the smell of the tea, the fact it was a warm drink and yes, the taste.
D’s angst continued at home as she (eventually) told me that she’d also been upset by another pupil mimicking and “mocking” her in class. This is where our two children differ, T would no doubt reply with something quite sarcastic or give one of his withering looks, whereas D doesn’t have the confidence for that and fears being told off by teachers.
Poor D, not the best end to January, its been a bit of a dismal month all round, roll on February and being that bit closer to Spring!
This month has had quite a few “grey” days as I’ve been including a mood element too, which again, will be fun to compare.
I’ve mentioned before that we’re very lucky to have a SN Playground relatively close to us (by that I mean, it’s a walk, a train to town, change trains and then another walk and a precarious road crossing, thankfully we had a lift there and back today so that helped my feet), it’s a wonderful place.
A place where – and this took some getting used to – I can relax, knowing that D is enjoying herself, knowing that if she gets a little bit overwhelmed that there won’t be stares or tuts or whispers because, being a SN Playground, everyone there understands.
Thames Valley Adventure Playground is near to the Berks/Bucks border and I have honestly never seen D so relaxed there, outside of our house. There’s bikes and trikes, a soft play area, a music room, crafts and plenty to do outside. She always enjoys herself there.
It took a few trips there for me to realise that I don’t have to hover like a helicopter near her, that she knows where everything is and, as long as she knows where I am, she pops back and forth, updating me on what she’s been doing.
We were there for a birthday party today, she had a whale of a time on the trikes and soft play and I did this:
The Playground receives no government funding so I’m always very happy to mention it, especially after D’s had a good time. Click here for details of opening times and facilities etc.
That’s what capacity our household has been running at for the last week as our T was on a school trip. A residential one for seven days.
Daunting if your child is NT but … lets throw high functioning autism into that, sensory issues around food and some traits that T would mask during the day and let out at home and we’ve just been along these lines this week:
“How is he? Is he eating? Is he sleeping? He’s sharing a room, are they getting on, what if he does one of his spectacular glares? Why isn’t anything going onto the twitter feed for the centre? Ooh look there’s a picture! He looks skinny and tired but okay, phew!”
You can imagine, veering between a “all is okay” when a picture pops up and then not so.
D has missed her brother, she’s extremely black and white about things, very much like the Katy Perry song “you’re hot then you’re cold…up then you’re down…in then you’re out” all very “sunshine or showers” with no inbetween. She said to us “T’s not part of our family now” because he’s not here, the hot/cold way her mind works.
And then there’s me. I’m facing two further operations this year, one on each foot, separately.
I was expecting it. They didn’t look right when the bandages first came off in November and they are in constant pain, day and night. Joints haven’t healed properly and it’s daunting but I’d rather go through this and get them sorted than not bother and be on pain killers for decades.
So…another request for home-school transport submitted, two more operations to schedule and a LOT of disruption but it will be worth it. It will!
But it’s not all bad. D brought a house point certificate home yesterday for – guess what? – 75 points! 75% towards 100, which isn’t bad for January is it?
So, 75 per cent is our word of the week.
And our T is home! We had a hug and he’s brought home masses of dirty washing and a few smiles. He’s been caving, walked up mountains and sounds like the groups really pushed themselves. And got marked down as a veggie so filled up on carbs and puddings which they all burnt off during activities.
(This picture was on the school site so it must be okay to share here, T in the back row on the left. Looking cold but happy. Phew!)