Tuesday, May 01, 2012

Respite? Don't make me laugh .....

Ella's photograph in Be My Parent 10 years ago :)
Did I say in the last post I was struggling for something to write? Me and my big mouth. This time I could write a tome - been using that word a lot this week! - allllllll about Ella. I was chatting to a friend this morning whose little girl also has SN and I think if we had to use only one word to describe how it feels it would be demanding....no, tiring.....no, exhausting.......no, stressful. Okay, there is no one word to describe how it feels. I wouldn't change her for the world, but she really is like that poem "When she is good, she is very, very good, and when she is bad she is horrid." And 'when she is horrid' we are talking kicking, punching, hitting, screaming - like you have never heard anyone scream before - foul language etc. etc. etc. I think, because her needs aren't obvious, one assumes that she's not 'as bad' as a child with obvious needs - e.g. feeding tubes etc. I absolutely get that Mums with kids that have serious medical/physical needs need respite to recharge their batteries. But dealing with Ella is emotionally as well as physically just as exhausting, and yet the local council feel that her needs aren't severe enough to warrant respite. Maybe next time she is postal I should video it (cos that wouldn't get me in any trouble with social services, filming it instead of dealing with it!). I'm not 30, or even 40 any more, and I am tired, so bloody tired. Social Services last suggestion? ...... I go on a Behaviour Management Course ......excuse me, but are they f**king joing? I managed to get a child with ADHD through the entire education system without a permanent exclusion. And I teach BM workshops. What could I possibly learn that will make our life so much easier?

Ella came to live with us 10 years ago today - and I love her more every day - I hurt when she hurts - I laugh when she laughs - and she has given us tenfold the pleasure as the pain. But it is physically and mentally hard work. I was thinking about other 'normal' (not as I've ever considered our family remotely normal!) families with kids in their teens and twenties. Now should be the time when Jeff and I start having weekends away on our own, letting the kids look after each other. I can't even begin to imagine the carnage we'd come home to if we did that! I don't reckon we've had even so much as a night away together since Ella came to live with us. We go away she comes with us. I don't mind that - we joke about us touring the world when we retire - all 3 of us! And that's fine. But am I being selfish wanting the odd break with Jeff? I don't think so. I do thank God Jeff is the man he is. Once a year I get to go to Center Parcs for a weekend with some of my closest friends and be something other than Ella's carer. He'll book holiday days if he should be working because he knows how important those few days are to me.

Should I describe myself as Ella's carer?  Yes I am her Mum first, but let's not underestimate what I do. Most 13 year olds are self-sufficient. You could go to the cinema for the evening. Hell, they can go to the cinema for the evening. Nip to the shops. They can make themselves a drink. A sandwich. They are becoming young adults and learning life skills.

Ella at 13. Well, there's the nappies at night-time and the odd wet clothes. Oh, except when she's having a tantrum and will purposely wet her clothes for attention. The epilepsy. The tantrums. She still bumps down the stairs and needs someone behind her when she walks up them. The tantrums. Sleep will not happen, no matter how tired she is, unless either Jeff or I are upstairs with her. I suppose we have moved from her bedroom floor, to our own bed, so that's progress right? The tantrums. If she doesn't want to do something then she will lay on the floor and not move - no matter where we are. When she was 3 we'd just pick her up. She's 13 now and it's not so easy. The humiliation. At a recent wedding she completely lost the plot and you just know people are judging. And you shouldn't care. But you do. She can't walk far. She has the attention span of Joseph (see even in darkest despair I can smile). The autism means extreme tears and stress if something changes unexpectedly. We are still working on writing her name - Ella, we know Gabriella is never going to happen. She has no concept of time. So 5 minutes means now or we risk another tantrum. She can't walk far so we have a wheelchair now (which we had to pay for ourselves - the fact it was a bargain is just a bonus), but we still get 'the look' when we park in a disabled bay. She needs support with all her personal care. Because she is vocal (but does not have the communication skills of a 5 year old) and can move around the house there is no rest. There is no thinking let's do nothing for the evening because I will be on the go from the minute she gets in from school till when she finally goes to sleep - and praying she doesn't wake up. And that's just what I can think of in the 10 minutes it's taken to write this paragraph. Oh, and did I mention the tantrums?

I must mention Social Services one saving grace - Vicky, Ella's carer. When we were refused overnight respite, the SS (?freudian slip?) offered us instead ......... six whole hours a month. Well I can't begin to tell you how excited we were. Nope, really can't. Anyhow, Vicky is a wonderful, gentle, lovely girl that Ella adores. She takes her out twice a month for 3 hours, and that is the sum total of our respite. So, assuming that if we want to go anywhere, we can't leave till they've gone, and we have to be back before the 3 hours is up. You can't even get to the cinema and watch a film in that limited time window.

This is just a glimpse of Ella's life. For that I get a Careers Allowance of £55.00 week. Ella's residential unit charged over £300 a night per child. Am I the only one that would question the two extremes? I'm certainly not suggesting that the allowance should be £2,100 a week! Interestingly if I put my hands up and said I couldn't cope, she'd end up in the foster system where a foster carer would receive around £500 (extremes 300-700) for doing the same job I do. And..... they would be offered respite! That's not a knock against the fostering system, it's still something I would like to do when the time is right. But it's the figures that I don't get. How can a stranger receive ten times I do as her carer? Break that £55.00 down and it's about 35 pence an hour for all that I do. I do it, and I would even if we received nothing, but is it unrealistic to want support? It's not even about the money in your hand. It's the acknowledgement. 'You do a hell of a job Mum, but would you like a break once a month/half term?'. Oh I did forget to mention that the Carers Allowance reduces as soon as I earn £100 a week. So if I decide to try and kill myself by getting a job as well as doing everything I do for Ella for some extra cash, what I receive in one hand I lose in the other.

Do I really live in a developed country in the 21st century?


  1. I know it probably doesn't feel like it to you but this was a really inspirational read for me, and has given me a huge dose of perspective. Thank you, Lis xxx


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