I always considered myself way too self centered to be any sort of mother, and to be brutally honest again, I never got on with any of the kids that belonged to my friends and went into a blind panic if ever asked to 'watch them for a minute' I was totally confounded by the presentation of the 'latest addition' which had to be coo'ed over and told it looked just like some other member of the family, a resemblance I could never see, when the reality was a red, wrinkly, wriggly, smelly and squawking little thing wrapped in pink or blue to define gender. I could never remember their names, neither were their birthdays engraved on my memory and heaven forbid that one of the little blighters would prefix my name with Auntie! I'm an only child for Christs sakes, there is no way I can be anybodies Auntie!
So there I am in 1985, nice quiet little business just the two of us. Scraping a living together in a craft business, nothing big, just comfortable after the excesses of the 70's, and I find myself pregnant. D'oh! I was 34yrs old and on the pill! How the.... yes well, there you go, Ce la vie, as they say and you have options. Well no, not really, it's a new challenge lets go for it, we had to take this seriously, so we got married, to this day I don't know why, it made no difference at all, but that is another blog for another time.
First child born 19th December 1985 by emergency cesarean section, then wrapped in a pink hospital blanket with the word 'girl' woven in stripes across it, you remember the oddest things don't you, coming out of the anesthetic that blanket was the first thing I saw. Child placed in my arms, I began to focus properly on what was happening, she was looking at me, no, not just looking at me, but searching about in my eyes, I reciprocated, a primitive, even primeval moment, never to be repeated but changing everything. And all my childless friends receded into the shadows.
1987, back on the pill, one child is enough, especially as the one we had was showing distinct signs of being autistic, not that I can get anyone to take me seriously, but that is yet another blog for yet another time, and what do you know... pregnant again. Phoned my Mum with the good news, "Ha, I only had you, you're on your own kid." were her loving words of encouragement and I progressed through the pregnancy with every known form of indigestion and a predisposition towards grumpiness. Determined not to endure another cesarean section, second child born 26th April 1988 in the conventional manner with no serious medical interventions and no pain relief. Another girl, good, not fond of little boys, this one didn't do the primeval soul searching look, this one just looked me straight in the eye and started bawling. I was ecstatically happy when the whole messy business was over, a month later husband had a vasectomy since the pill was proving unreliable, and two children was definitely enough!
Since we had our own business in those days inevitably I worked right up to the last minute with both pregnancies, and was back at some sort of work within a month, and we managed to keep the business running until it became obvious that first child, Sarah was not going to be able to attend and infant school near where we lived and if we stayed where we were the only option would have been a residential school many miles away, since it was clear her autism was severe we decided that sending her away from home at such a young age was not going to happen, we would have lost her had we gone along with that idea. Nothing for it, we had to relocate.
Which is how we ended up in the Cynon Valley, which like all people who have never come across it before, we innocently pronounced Sign On Valley, which we were soon to discover is what you do in the Cynon Valley, not the way you pronounce it. Here is the way the dictionary says it should be pronounced...
cynon is pronounced as k uh n uh n where,
| k | is pronounced as | k | in key | |
| uh | is pronounced as | u | in up | |
| n | is pronounced as | n | in no | |
| uh | is pronounced as | u | in up | |
| n | is pronounced as | n | in no |
Because Sarah had special needs we had plenty of help from Social Services, As far as children's services go, I cannot fault the Rhondda Cynon Taff council. They have been brilliant with Sarah all through her school life, from 5 right up to 18, 1st couple of years in an observation unit in an ordinary primary school, and then in the local and quite excellent Maesgwyn Special School, which I can never praise highly enough for the care they took over Sarah's education. Sarah managed two years in a special unit within the local college before education was over and Adult services took over, transition is tricky and needs to be handled with care, but that is another blog, actually it is more than a blog, its a hand book, I'll come back to it sometime.
I digress, all the while the kids are at school and because of Sarah's special needs, as a family we were well served by Social Services, and were regularly visited by the welfare benefits department to make sure we were receiving as much help as was available, financial and otherwise. But the girls are no longer children. Hannah has sensibly stayed on in Bath after University, and Sarah will be 24 in December, and as far as we are concerned as a family, looking after Sarah now is harder and more expensive than it was when she was a child, she still doesn't always sleep, and now we have to stop her from eating as opposed to encouraging her to eat, in fact, you could describe her as high maintenance. She is very expensive to run! Sarah is our work, we spend hours arranging things for her, fixing the things she breaks because we cannot afford to replace stuff as frequently as we would like. Sarah is a bit clumsy, so stuff gets dropped or just not used properly and consequently just breaks down, CD's and CD players are doomed as soon as they enter her room, we tend to make a lot of copies and I really have lost count of the number of CD players she has destroyed, three so far this year. Ebay has been a godsend!
So, getting back to welfare benefits, Sarah gets what is due to her, she will never be able to work for a living and unless a miracle happens, she will always be dependent upon the state. I hate that though but there is nothing I can do about it. So while we can, we do what we can for her, and in the process of caring for Sarah for all these years we have put our own lives aside, after all this time both myself and my husband are probably unemployable, we are both in our late 50s, both beginning to feel worn out physically and mentally by the consequences of Sarah's severe autism. We get income support at £77.35 per week to make up the shortfall in the legal minimum amount needed for two people to live each week, the other part being carers allowance of £53.10 per week. We can manage on that, we don't run a car, we never go out as a couple for a meal or to the pub and I honestly cannot remember the last holiday we had, but it was more than 10 years ago. But we are on duty every minute that Sarah is with us. granted she is at the day centre three to four days a week, that amounts to a maximum of 28 hours a week at the day centre, she also gets another 6 hours out with social care workers, but that doesn't always happen.
Lets do the sums, there are 168 hours in a week, up to 34 of these hours Sarah is being cared for by social services so that leaves 134 hours for us to care for her. That means the carers allowance is being paid at a rate of £o.39 per hour (for the two of us). Under the new fairer charging system for social care for those living at home, the local council is currently expecting Sarah to pay £75.00 per week for those 34 hours, very reasonable at 2.20 per hour (if she were to use all those hours up!), trouble is, once she has paid her £75.00 per week as a household with all the usual bills to pay, we are going to have serious problems making ends meet. Of necessity, Sarah pays her share.
Lets do the sums, there are 168 hours in a week, up to 34 of these hours Sarah is being cared for by social services so that leaves 134 hours for us to care for her. That means the carers allowance is being paid at a rate of £o.39 per hour (for the two of us). Under the new fairer charging system for social care for those living at home, the local council is currently expecting Sarah to pay £75.00 per week for those 34 hours, very reasonable at 2.20 per hour (if she were to use all those hours up!), trouble is, once she has paid her £75.00 per week as a household with all the usual bills to pay, we are going to have serious problems making ends meet. Of necessity, Sarah pays her share.
You don't hear much about the poverty trap these days, but let me tell you, down here at the bottom end of the welfare benefit handouts, we are in a nasty sharp poverty trap. We have no savings, we have a mortgage to pay, we still have to pay all the usual bills, council tax, water, gas and electric, once these are paid and the other little essentials like telephone, TV, broadband, food etc., so not much left at the end of the month to put towards setting up another business, which is what we would ideally do, because we have to consider what the hell we are going to do if say, the washing machine dies, or, heaven forbid, Sarah's TV finally throws in the towel, and she'll be needing a new bed soon and mattress, these things don't come cheap and we cannot afford them.
I no longer laugh at the make do and mend policy of my parents time, and how I regret the extravagances of our pre children days. In the 70's I worked hard and played hard, I've got nothing to show for it, just memories and the knowledge of the experience, looking back though, I realize now that I did work very hard indeed, almost always a seven day week, but working for yourself meant that if you wanted time off you could arrange it properly and have really good and worthwhile time off. The only difference now is I work seven days a week for 39p an hour, have to claim welfare benefits to get by and can no longer afford time off.
That it, rant over and with any luck, when the postal strike is over I will get a letter from the council telling me that they got it wrong and by using the calculations they identified in their own guidelines to fairer charging, they will see that they should only be charging Sarah £2.50 a week at the most and that £75.00 is pushing their luck! If they insist on that amount I shall be asking for a similar amount (£2.20 an hour) which would bring in £294.80 a week before tax and insurance of course, that's about £15 grand a year. That would do us, it is twice as much as we get at the moment if you include income support, and maybe we could have some recognition of how bloody hard we work for the pittance they seem to think we deserve. Not much chance of that happening! It would cost social services a whole lot more if we decided we could no longer cope and we're handing over responsibility to them, but of course they know that isn't going to happen either.
I'm leaving it there, rant really is over, as far as writing it down goes, it will continue to rumble about in my head for some time though. I'm going to shut up now....
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