After having a bit of a pity party for one, I’ve now dragged myself off the floor, dusted myself down and got back on the wagon.
There are too many big battle to fight currently to waste energy on self-pity!
Today's battle - continuing care.
Sam's current school has not fought for a 1:1 support assistant for him, despite repeated requests/begging to do so. One of the issues is trying to decide whether Sam needs a 1:1 for education reasons or health reasons.
As far as we’re concerned, he needs it for BOTH... but local authorities, schools, etc., don’t like it when things can’t be boxed neatly into one thing or another. So, we’ve played a silly merry-go-round for the past 15 months trying to get things put in place to allow our boy to go to school safely, and to access the education he deserves.
Last week we (I) hosted all of Sam's main professionals and a few other people in our home with a view to thrash out some sort of arrangement to meet this needs. Due to school's failures to arrange training in a timely fashion, Sam is at home. And so am I, unable to get into work because we can’t get carers in - because we don’t have a continuing care package, and because we’ve just moved we haven’t had an assessment for direct payments yet!
It's days like these when the difficulties faced by working parents of SN children become ultra clear - since Sam had his PEG inserted on 22nd April, I haven’t been in work more than 4 hours. I am eternally grateful for the support of my line manager and head of school, but there does come a point when the worry over my job tips over into home life, and that point has been reached and breached.
In the wake of the general election, many special needs families are terrified about what changes might be brought in - we’re in the fortunate position of being able to work and not have to rely on benefits to support our families; a friend recently had a promotion at work and as a result her tax credits have been reduced - by more than the increase in her salary!
It does make me wonder, strongly, why on earth I bother to go to work and push myself through this much stress and worry... and I know I’m not alone in this. I work because I have to - my salary is good enough to allow us to support ourselves, more or less. We aren’t eligible for benefits other than child tax credit (severe disability element) and DLA (for both me and Sam), but that's fine because we don’t NEED them.
Other people DO. And those who genuinely need the support should be able to get it without having to almost kill themselves with the effort of trying.
The outcome of the meeting was very positive - Sam ticks all the boxes for continuing care so we can now move forward to applying, which will *hopefully* get us the help we so urgently need. It isn’t money we need, or benefits. We just urgently need people to physically help us, to keep our little boy safe when we can’t be there because we have to work, and to help us with the lifting aspects of his care as he gets bigger, and we get older. Which brings me, quite neatly, to my current predicament.
Which is lying almost flat in bed, with the laptop perched on my (OK, fairly round) tummy... What with moving house, selling our old one, coordinating all the usual bedlam of changing local authorities, forms going walk about, school muck ups etc... I’ve got a tad run down. And that is putting it politely.
This was noticed at work in March, when my incredibly supportive manager took me gently to one side and told me he was giving me the next 2 weeks working from home, to give me a change to get some rest! Yes well, tonsilitis hit almost immediately, closely followed by bronchitis. Daddy continues with the usually Daddy stuff, Mummy continued (albeit looking like death warmed up) to do the usual Mummy stuff. And then this week happened.
To add to my enjoyment, norovirus has paid us a visit - ME notably. The children and husband are fine, one minute I’m feeling perfectly healthy, the next.... let us simply say food is not an option for the foreseeable future. This presents quite an issue when you have children, especially one who needs your full attention for all his needs, 24/7. As I’m too ill to get out of bed (if you’ve had norovirus, you’ll understand), Daddy has had to take a day off. So far today, the poor little man has only had 2 of the 4 feeds he should’ve had, has had less than half his usual therapy and Daddy has now dived off upstairs to unpack more boxes. Leaving me propped up with a bowl, and the Dude looking completely bored, stuck in his p-pod because I hurt too much to move him. Despite (in my mothers words) looking more like a zombie than the walking dead themselves, I can’t help myself - there’s just too much darn stuff to do!
So... despite being about as ill as its possible to be and remain out of hospital (I AM NOT going to have IV fluids, I will live off ice pops and chew ice chips and even take those revolting re hydration thingumys before they get me on IV fluids!) I have still insisted on sorting through a load of documents, changed our address on several things (DLA, notably), confirmed the sale of our old car and managed to sort a few more bits and bobs out before my incredible Mum (who insisted on driving the 70 miles down to ours with my Dad in tow to look after me) removed my laptop from my sickly little mitts and insisted that I rest.
So I am going to take her advice and do precisely that... until the next time x
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