Funny old week. Been up and down with energy levels and mental capacity to deal with stuff. Have cancelled a couple of nights out partly due to not feeling up to it, but also because I have a few big days out planned this month and need to prioritise my 'wants' in comparison to my money situation. But, overall, it's not been too bad.
Anything upset me this week? Hmm, not really, although some things have made me raise questions in my own head.
I have to admit I've been keeping my head down, so no watching of news, not really checked into Facebook that much and when I have, I've skipped over things that I knew would either upset me, anger me or appall me. Is that bad?
I hate people who bury their head in the sand, but I've done exactly that this week so I'm now wondering if it's a bad thing or not. I think on a permanent basis it is, but every now and then I think it's probably an essential thing to do for your own sanity. I've got a lot of issues going on at the moment which are pretty close to home, so, although what is going on abroad is upsetting, I'm not up to dealing with apart from the odd campaign which is easy to sign.
Ok, I'm going to admit it, I'm scared! Callum's DLA comes up for renewal in a couple of months as he's 16. Not only that, but PIP is coming into affect and I'm not sure if it will be in our area when the renewal comes up. I don't understand PIP and I don't like things that I don't understand. Need to make an appointment with Kent Autistic Trust and hopefully they will be able to enlighten me. He currently gets enough DLA for me to claim Carers Allowance (which I've always found strange as I'm his mum and I'd care for him anyway; doesn't matter how many times people say "but you have extra to deal with" or "you'll have more difficulty finding work to fit around him", etc and with regard to the second one I have found that to be entirely true and even worse now that we home educate). That means that I currenly have approximately £550 a month coming into the house. That covers all his home education including his trampolining classes, maths tutor, books, online courses, social engagements, etc. It also covers his sensitivity issues with regard to clothing, his glasses (although he is under NHS at the moment, it doesn't cover the polarisation he needs because of his optical migraines), my mobile bill, my loan (times got stupidly out of sorts a few years back), my clothing, our haircuts, days out when we really need a break, my life insurance, my osteopath for my tilted pelvis, his investment account (he really wants to learn to drive so we took out a investment account to save for lessons and hopefully a small, second hand car), a small part of the TV licence and the TV bill as he has his own Tivo box and various other little things like the odd Subway, his Xbox magazine, etc (which I don't begrudge him as other kids probably get the same sort of thing). If this money stops we'll have nothing, so no treats, no clothes, no money for specialist stuff, no trampolining, no social engagements and the TV will have to go.
Now I know that some of those things aren't essential, ie, the TV and his own box. I.e. social time although some people in the know re Autism will argue (rightly so) that socialisation for ASD kids is essential for learning how to deal with the outside world which is so scary for them in the first place and neural typical kids need socialisation. They must do as it's the first thing that anyone, even authorities, ask me about when I mention home education; first thing, not education plans; socialisation plans - honestly.
He'll have to stop trampolining and that is a shame as he has done so well and loves it so much and it's the only physical thing he really does apart from walking.
Lord alone knows how I'll pay for things like clothing and glasses and his maths teacher will be out of the question.
Then there's me. How will I pay off the loan? I'll have to give up my phone. My life insurance will have to be cancelled. I'll not be able to have osteopathy treatment so I'll be in constant pain and they'll be no breaks for me when I need them, so depression will spiral.
What about my partner I hear you ask? Well, although he earns what the government thinks is over and above what we need, ie, we aren't entitled to Tax Credit (he's just over the limit even with the disability bit), he's in debt, so he doesn't have much left over at the end of the month once he's paid out for the mortgage, contents and building insurance, his own life insurance, debt, food and the money he gives me for utilities as they are all in my name.
It's infuriating to know that on paper we are ok, but in reality we aren't! I'm scared stiff of losing the money as my situation won't change. Callum won't miraculously not have Asperger, his issues won't disappear overnight just because we aren't receiving benefits, my hip won't just put itself back and stay there, I won't stop suffering from pain or depression. And I certainly won't be able to jump into a job that pays what I will lose, still be able to home educate and who will let me stay at home at the drop of a hat because my son has had a meltdown or because I can't move due to pain.
There are a lot of people in my position, some of them in worse positions than me with either more complicated health issues or with people that they care about who are far worse than Callum, but the government just doesn't seem to care! They don't see the lives that are led, the worries that we have or the day to day problems that we encounter. All they see is the money that they will save or think they will save as in the long run they'll be paying out for more hospital visits by me as my physical and mental health deteriorates as will Callum's. They don't see the savings they are already making by not paying for outside care that we Carer's are doing ourselves (and believe me it'll cost them a lot more than the 60 odd quid a week that they pay us in allowances).
I often think that if I actually split up from my partner, go and live in rental accommodation and claim benefits I'd either be better off or, at least, not worse off which is an awful thing to think, but when I see people who are on benefits with they huge TVs, their holidays, their kids in designer clothes with the latest technology in their pockets, I can't help but think WTF is going on? I know that not all people on benefits are like that, but it is certainly portrayed that way in the media.
We are just an ordinary family. I'm a stay at home mum who cares for her child with problems. My partner works hard and continues to work no matter how shitty the job is. We don't have holidays; we can't afford them. Our house is falling apart, but we can't afford to fix it without getting into more debt. And now, I'm living under the blackest cloud of losing a huge chunk of money that truely does just get us by each month just because some idiot who knows nothing about us thinks we may not deserve it anymore.
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Good times had with simple things and good friends - no technology required.
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Rant over! Off to drown myself in a cup of tea.
Cya
