No.1′s attendance record for High School – he missed 3/4 of the last two years of primary school, too.

No.1 has been absolutely fine, good, GREAT. He’s in school full time, has discovered a real love for Rugby that’s not dented by stud marks in his head form the latest scrum (his head was dented though), and we really thought that the CFS was finally behind us for good.

But since he began Yr 9 in September I’ve been quietly watching his energy levels drop, his mood quieten and his health slowly decline. Today he is off school with a  very swollen throat – but he has no temperature, no other symptoms beyond very swollen neck glands and an achey tired body… And it all just feels far too horribly familiar.

Is it just me being over-paranoid, or do I still, after all this time, have to watch him and be ready for a return of the dreaded CFS?
Should I be cutting back on his activities? Making him drop out of his new love Rugby in an effort to head off anything before it starts?
Force him back into being marked out as ‘the odd kid who’s always off school’?
Or should I just not worry so much, accept it’s simply normal start of term tiredness and let him carry on?

If it is the CFS again, I know that just keeping on will inevitably make him worse, and that I need to start managing the situation now.

If it is not CFS and just run of the mill teen bugs, then stopping his activity will lose the benefit of the exercise and enthusiasm he has so recently gained, along with his long-fought-for social circle (long term illness as a child is the most lonely place you can possibly be). Not to mention the school work he’ll fall behind on AGAIN.

How the hell do I judge this? My perception of his health is totally screwed. It’s my job to be his advocate, but how can I see him impartially? Am I just an over anxious parent? Or am I being the one person who can spot this and stop it before it starts and ruins another two years of his life?

How the fark am I supposed to know?

We’re missing on No.1′s parents evening tomorrow – C is taking boy to Old Trafford, and now No.1 has an ear infection, so I can’t possibly take three children, one ill, to sit in the school half an hour while I trot round the teachers.

But following the snitty message from the school yesterday (“just to inform you that No.1 had a maths test today that his earache has happily stopped him from having to take – I wanted to reassure him that it WILL be waiting for him upon his return” – i.e. “your son is skiving AGAIN with fake illness, and we wanted to be sure you know that we know...”), we called the school today, explained the situation, and asked that teachers call us if they wanted to chat.

I’ve spoken to just four teachers – not one of which seemed to really grasp how ill he’s been (really? his attendance was 43% last year, and you didn’t KNOW this?). Nor did they understand quote how much school he has missed in primary either.

The head of year is also his games teacher, and he was fantastic – very understanding, apologetic and positive. English and French were both mortified when they understood the nature of his illness, and actually how proud we are of just how far he’s come. I think they were both taken aback initially when I refused to be apologetic about his absences – but soon switched from despairing at his lack of commitment to being thrilled by his progress when they understood the odds he’s been up against.

His maths tutor is also his home tutor. She was fine with me – not exactly warm, but more understanding now. We shall see how it goes as the term progresses.

Why do we always feel like we’re starting from the beginning? It really shouldn’t still be this HARD – thes epeople have been teaching him for 18mths, and you’re telling me they had no real clue about his health?

*heads for the gin*

SO. I’m jumping back in again, and I’ll back-fill as I have time.

Yesterday was a Big Day.

No.1 had a rough start to Yr 8. He’s been dropped a set in three subjects, and his best friend and he fell out over the summer, so he spent a very lonely and sad first day back. He’s a bright bright boy – but out of the last three school years he’s maybe managed four full terms (if you add his entire attendance up; Last year he managed just THREE weeks at 100% attendance, and for the year he was at 43% attendance).
No wonder he has gaps in his Maths and IT knowledge, and his confidence in French is shaky. He was in-his-boots gloomy, very tearful and too emotional about it all.

Boy however had an excellent start to Yr 6. He was very scared, as he always is, starting a  new term, new teacher, new room. But he REALLY likes his new teacher. Who started the day with the words “I know some of you have been a bit apprehensive of coming into Yr 6 – but you really don’t need to be”. Music to my boys nervous ears.

Jolly did what Jolly does – shrugged, tipped his head on one side and said “yeah, it’s good. She’s nice. What’s for tea?”.

And Pink? My baby girl? She loves school. Naturally. Like everything she faced it head on with a confident sparkly grin and a pair of baggy socks.

Today, No.1 had a MUCH better day. He had his first French lesson in the new (lower) set – loves his new French class & teacher, and for the first time doesn’t feel he’s struggling out of his depth. This is Good.

OH and.

And and AND.

He did P.E.

First P.E. lesson in what? Two years? Nearly three? It was circuits, and they just had to run around the large gym hall, see how many circuits they could complete. he let the pack of boys belt off, knowing he’d be slow, and just decided to do what he could.

he said the first three circuits were agony, and he nearly stopped when he thought his lungs might actually burst. But then some charming child muttered “come on then, fat boy”. And so he gritted his teeth and plodded onwards. And he said by lap 5, it was easy to just keep on putting one foot in front of the other.

In the end he ran almost 2km, lapped a lot of them and finished fifth out of 40-odd boys.

I’ll just pause for a second and absorb the way my insides just lit up as I typed that.

Remembering the way he was hovering in the kitchen when I got back from the school run, bursting to tell me, the shiny beaming of PRIDE on his face. Just… Magic. Priceless.

Apparently his PE teacher, who’s also head of year and has followed him closely over Yr7 couldn’t stop shouting out encouragement and praise.

Course, it’s now 9.30, and he can’t sleep because his legs are aching so much. Not, I think, the M.E. – just sheer objecting complaints from unused muscles!

He really did.

The school provided a laptop for him to use while he can’t write, he was a little shocked at our refusal to go and collect him twice – but it did kick him into making more of an effort, and he actually felt quietly satisfied with himself that he had managed it. Of course, being in school more means more contact with his friends, more confidence in his own ability to cope, and finally seeing school as a regular ordinary thing again,  rather than a shall-I-shan’t-I option to exert himself over.

This term he’s finally back to a full day – but not a full timetable yet. He doesn’t do PE, and the last lesson of the day he spends in the ‘special needs’ room, where he has access to a computer, can do his homework, or catch up on lessons he has missed. It seems to be working really well…

And the knock on is that he’s sleeping better, of course, as he’s more tired.

It’s a wonderfully positive circle. Fingers crossed we’re on the downhill run now.

Oh, and he finally had his hair cut. Better, no?

Bored.

Tired.

Simply fed up with No.1 not being well.

Today, the school called to say he’d had enough.

And I didn’t go and get him.

I told them to send him back to class.

*sigh*

The guilt wracked me for an hour, until he called again, and this time I practically ran to get him.

And yes, I’m well aware how that makes me sound.

Frankly, I don’t care.

He has hit a point where it’s just easier for him to give in than it is is for him to exert himself, to make himself plod slowly forwards even if he doesn’t feel like it. And that doesn’t help anyone. I do trust my own instincts – I do know when he’s genuinely done too much, had enough, and actually in need of me. And also the times when he’s simply a bit tired, overwhelmed, hungry, or feeling emotional – and just wants to retreat back to his home, to the comforting blanket of familiarity.

Having missed so much school, he still finds certain parts – the busy corridors in particular – utterly overwhelming when he’s feeling fragile.

But they’ll never get less so until he forces himself to endure them.

And then, in the evenings. When he wanders pathetically down the stairs, saying he feels *whispers* “Really BAD!” – when he hasn’t done his bedtime routine, when he has been lying quietly for no more than 30 minutes, when I know he is interrupting my small window of adult ‘me’ time not because he feels extra-ordinarily unwell, but because he is lonely, and hurting, and honestly just wanting one of us to go and soothe him, lie down with him, cuddle him for a while.

And more often than not we send him back to his room with a flea in his ear, with a brisk, “well, lie quietly then, get up and read if you need to, what do you want us to do?”

It’s harsh. And as we say it we know it’s harsh. And as we watch his shoulders droop, his resigned quiet face turn away, one if us will huff and puff, but get up, go with him, be the parent he needs.

He’s just a 12 yr old boy.

Who hurts.

But for two and a half years we have been nursing, soothing, cuddling him through this strange horrible invisible illness.

And I’m so TIRED of him not being well.

The constant draining emotional need of him is so bloody wearing.

And simply writing that, no matter how true it is, makes me feel just a bit shitty.

The in laws are dog sitting for their friends again, but are returning home next Saturday, so we decided to have an Easter Sunday dinner with them a week early.

The lamb roast was delish, the pavlova scoffed to the last crumb, the sun shone, and the necessary French cricket match was as funny as only a silly family tradition can be.

But as the afternoon wore on, it became apparent that enough was enough – No.1 started to get tetchy, arguing over each point won/lost (he actually said “you cannot be SERIOUS! It was OUT!” and didn’t understand why the grown ups all collapsed with squeaks of giggles).

Eventually, we called it a day – Boy and Jolly carried on playing football, and NO.1 retreated indoors. In high dudgeon.

Then there was a shout.

And crying.

I went upstairs (slowly – am too used to his histrionic melodramas) to find him sprawled on the office floor – he’d come rushing through, caught one foot in his other trouser leg and gone sprawling, cracking his arm on the radiator.

Ouch.

Small bruise showed, so I was dutifully sympathetic, gave him a hug, and told him it’d feel better soon – just go rest up for a while. We know his hyper-sensitivity to pain causes him to over react to the slightest thing, so I was rather unconcerned and went to put the kettle on.

He appeared in the kitchen 15 minutes later still in tears. White face. Unable to move his arm.

Genuine alarm bells rang.

I dosed him with nurofen, applied a pack of peas (frozen ones, not some mystical cure from Sunday roast left overs), and sat with him for a while.

It soon became apparent that this was the real thing – or as close as we’ve ever come to it.

Not a single hospital dash for children before; we’ve got off lightly, I think.

C packed him into the car, and headed for A&E. In laws went home, I rounded up the smaller troops for some tired TV before bed.

Small drama followed when C rang to say there wasn’t an A&E at weekends at our local (9 miles away) hospital. What?

Had to call the emergency contact number o the door, to find the nearest is Dorchester. 25 miles away. *sigh*

So off they pootled.

Turns out he’s tried very hard to break it, but not quite managed it, just mashed the growing plates together in his wrist. Very painful, treated as a break with a splint, but will heal quicker and no need for plaster.

One VERY sorry for himself boy now sleeping in bed.

Two rather frustrated parents wondering how the heck he’ll manage to actually stay in school, let alone write his exams in 10 days time…

No.1 – tis apparently just result of stress of moving to High School, was entirely expected by CFS co-ordinator knowledgeable lady, and is why she didn’t sign him off her books when he was haring around swimming pools and going to the skate park last summer. Whilst he was slowly struggling (and not really coping) with the adjustment, his energy was sliding, and then around November his immunity took a dip, and the throat and ear infections began, then he stopped falling asleep at night (we’re back to midnight at the earliest…) – eventually had to stop pretending it was a bug (he’ll-be-better-next-week), and realise it needed better handling. Hang on, I wrote it all out for his form tutor earlier, that’ll catch you up…

“No.1 has unfortunately slowly headed into a relapse, falling back around 12mths on his progress.
In theory, if managed properly this should be relatively short lived, but we needed to create a longer-term action plan, as reactive-responses just don’t work with CFS. Resting when he’s tired isn’t good enough – he needs to be resting BEFORE he gets to that point, the end aim being to maintain an even energy level throughout the day/night, rather than serious peaks and troughs

His daytime energy levels are those typical for CFS sufferers – massively painful early morning and evening lows with a peak around mid-afternoon. Whilst Barbara talked through NO.1’s typical day she highlighted various areas which are clearly more difficult for No.1 to cope with, and suggested ways we can manage them better.

It was apparent quite quickly that he still finds the noisy, busy corridors of High School difficult, and the locker area in particular is very stressful for him. He also isn’t building any rest periods into his day, and with the constant movement involved with his timetable he’s just keeping going – and therefore suffering every evening with overtiredness (he rarely falls asleep before midnight currently, despite a strict wind-down routine which would have me sleeping like a baby by 8 every evening!). This of course then has the knock on effect of making his mornings even more difficult, the pain increases, and so the cycle perpetuates.”

So – he’s doing slightly-later-start mornings in school to avoid stressy corridor-before-registration issue, staying through lunch to have rest time with his mates and not feel depressed and isolated again like before, and we collect him at 2 – they only have one period after lunch anyway. On Wednesdays we take him back in at 3 for STEM club cos he’s a geek and he loves it and he’s been upset at missing it.

Boy – tis a phase, you’re right. Tis uber-common amongst 9yr old boys, apparently – No.1 did the very same thing. Mind you, tisn’t helped when one plays one’s DS under the bedclothes at 11 at night either. But all the lessons we learned with No.1 come in handy and we’ve adjusted the bedtime routine. Now instead of climbing into bed, having 30 minutes lights on to listen to MP3/audio books/read whatever he likes, he now has a comfy area on the floor in the corner of his room. He has to go THERE for lights on, and is only allowed to read. At lights out time (which we’ve currently pushed back to 9, and will gradually draw closer to 8)  he is allowed to climb into bed – bed is for sleeping only y’see. Tonight he was asleep about 15 minutes after finally being allowed to climb into bed. DS is residing currently on the Banned Goods shelf in the office, too.

Jolly is shouty cos he’s not sleeping. He’s always been one for 11hrs solid, asleep within 5 minutes of getting into bed. But now he’s taking over an hour to nod off, and then he’s frequently waking with bad dreams. Doesn’t seem to be worrying about anything, can’t get to the bottom of what is causing it, but he’s vicious when he’s not had enough sleep.

Pink is far more delicious, mind. Poo-ing where she’s supposed to. Oh the sheer joy of it. I’ll take all the small happy’s I get this week!

So.

Don’t know where to start really…
No.1 has his SATS next week – school has decided to go ahead with them (and that’s a WHOLE other post), so it has been revision, revision, revision for weeks. Practice papers, homework and stress stress stress. NOT good for my boy, he’s been deteriorating rapidly since the oh-so-perfect easter holidays, and last night was final bloody straw. Sobbing in my arms at 11 at night, desperate for sleep, hurting from head to foot, and for the first time ever he wailed

“it’s not FAIR! Why ME? I just want to be normal, and for it all to just GO AWAY.”

Broke my heart, and felt like wailing and sobbing alongside him.

Utterly impotent to help beyond sympathy. Stress comes out physically in the form of pain with him, of course, and he puts himself under so much pressure. He didn’t get into the high school he wanted, we were refused again on appeal (appeals were last week – what a bloody stress that was, didn’t even have the energy to tell you all about it), and he took it a bit personally, so he’s desperate to do well in his SATS to ‘show’ people. Pre-illnes he was a predicted 5A across the board (highest he could get, national average is 4C I think). When he came back to school he was re-targeted as low 4′s, and having missed nearly a whole academic year and had no friggin help whatsoever from the LEA he has climbed back up to an expected 5C, possibly higher. And no matter how much we tell him how proud we are of him and how we couldn’t care two bat shits abot the SATS, he hears so much at school about results and the impact of them that he’s talked himself into the fact that if he doesn’t get at least 5B’s he’s failed himself. FFS. Wanted to rip his bloody teachers head from his shoulders last night. If I’d had his mobile number I would have rung him and had him listen to what the school has done. No.1′s not the only one – the whole class is looking white and drawn. Is such a crapfest, and I wish No.1 would choose not to go in and do the bloody things.
Have kept him home today, and am lavishing him with cuddles and chat.

Alongside that going on in the house, we are restructuring C’s entire bloody company. You know how these things snowball – disaffection with our web host/designers has gone from having a contractor optimise the site, to having him build a new one, to me building a new wedding blog (now done), a new pregnancy site (finished next week), researching all sorts of stuff we’ve been paying for over the last 7 years and finding that actually we’ve been taken for mugs and spent  THOUSANDS of pounds needlessly. Makes me so angry.
Have fired accountants too, who similarly overcharged, and at the same time got so much stuff wrong, and again cost us even more.
It’s so easy just to keep doing what you always have, believing it works without checking. The design company were cutting edge 10 years ago – but haven’t changed since, and of course the internet has changed a lot in that time. On the up side, the new site is going to be everything C has ever wanted, at a fraction of the price. The downside is the sheer bloody volume of work involved.

Oh, and LS is snowballing faster than K and I can’t keep up with it. She’s got the builders in and is knee-deep in house renovation and moving out for a while, I’ve got all this stuff for C, and LS is snapping and snarling at the tight leash cos it just wants to take off and run.

But I did manage to have a period last week (timed to coincide with schools appeal and Big Meeting with No.1′s teacher – perfect, eh?) and not only did I not take any anti-bleed drugs, but i managed to use tampax instead of industrial strength wadding. So I’m thinking the thyroid drugs are finally having an effect.

There’s probably a gazillion other things, but that’s enough for now!

They got very caught up on NO.1’s CFS, despite us NOT appealing on medical grounds. We got told off for no supporting medical evidence from a doctor (despite being told AGAIN we were not appealing on medical grounds). But did get told that the Chair was a retired Psychiatric nurse and he had grave  concerns over the suitability of shipping a child in No.1′s situation 9 miles away from his support base (WHAT ABOUT IGNORING THE MEDICAL GROUNDS?????). They didn’t seem to comment on the whole academic achievement thing at all, which we felt was bad news, and it’s probably a foregone refusal.
But then came Stage 2B – the Playground Commiseration. Two other mums also had their appeals – one today (after us), one Monday. Both were quizzed in detail about their own occupations (?), which was never even touched on for us. One Mum had applied on Denominational grounds – two years ago she joined the village church, got her children to be Servers, made friends with the Vicar, and forced them to attend regularly against their grumbling and muttering… All because she knew it would help with the school application (WHAT??). Anyhoo, she was firmly told that her letter from her vicar really hadn’t helped her case at all, as he had implied she wasn’t really a regular church goer (once or twice a month around cricket practice). Felt a little happy about that, as had been cross they were trying that route to kind of sneak in the back door.
The other parents had tried on the grounds their son is gifted with sport. Got a vague hand wave and a “yes, yes, yes, never mind the cricket, ALL schools have cricket teams”. Then they tried the “we have cousins living in the town” to which they were told “yes but your family has been in business in a rural area for 150 years – you’ve probably got cousins in every town in the county”! This Mum came away acknowledging that beyond their own desire for a ‘better’ school, they had no real reasons to say their son would be better off there.
Neither set of parents was looked in the eye on arrival, smiled at or acknowledged when they left, neither set of parents feels they have a cat in hells chance.
I didn’t tell them, but we had lots of eye content, a warm welcome/goodbye, and didn’t once get shot down when talking about Cams education, his cleverness (more smug parenting on that in a while), and the reason we want him to attend this particular school is the wide ranging curriculum and the sheer number of opportunities that will be available to him, their Gifted & Talented programme, and their specialist status in science.

So, following Stage 2B, we’re eversoslightly a teeny bit more cautiously hopeful. More than they are, anyway. But still not much.

All shall be revealed after 3p.m. tomorrow. Positive universe thoughts welcomed.