Tag Archives: family

It’s Been Non-Stop (As Always)

1 May

No, I’ve not fallen off the edge of the planet; it just seems that way.

It’s been absolutely non stop since last summer, when the children went back to school and Teen Boy went off to college.

Small Girl’s return to school went badly, to say the least. I could not understand what had upset her so badly, but every afternoon and evening, and then the mornings, started to go back to what I thought of as the Bad Old Days, before she had full time support.

She was unable to verbalise anything specific, and I decided it must be “just” a bad transition after the good summer we’d had.

Oh no it wasn’t! I found out after almost three weeks – when we weren’t talking specifically about school – that her PSA (Pupil Support Asst) had been taken away from her! With no notice, and nothing home, not even an email to inform me of this massive change.

The effect on Small Girl was nothing short of catastrophic. Her ability to function in the mainstream environment depended entirely on having her own adapted curriculum and dedicated support from this lovely woman who could read her moods better than anyone outside of the family.

Obviously, I raised merry hell at the school. The poor head apologised that we hadn’t been told (What? You honestly expected a child who you know becomes non verbal under stress to pop out this wee gem at home time?) and then we got the bad news that the LEA had done this across the entire Highland Region. It wasn’t the decision of the school, and in fact they couldn’t cope, i.e. expect to fulfill basic requirements with the additional support they currently had. I said, well no, of course you can’t because my daughter’s full time support has suddenly been axed. Not allowing for anyone else, this was a serious issue.

The biggest problem we had with this withdrawal of support was the very real risk to SG’s physical safety; put simply, if she’s very upset she’ll do a runner. Highland schools are not on lock-down like a lot of English ones seem to be, so it’s the work of seconds to be out the doors and over the fence, straight onto the main road, down the hill, and – God forbid – into the sea (which is a huge draw for a lot of autistic children , SG being no exception.

So, we did the only sensible thing; we kept her at home. I could have decided to take the education department to a tribunal for endangering the life of an autistic child (among other failures) but in the end I thought it simply wasn’t worth the energy it would cost me, and the detrimental effect it would have on her, being effectively in limbo while we fought on. I wrote a letter requesting permission to de-register her from school instead.

There was a nasty moment when we got threatened by some suit at the council, so I promptly sent him a sharply worded email setting out in detail exactly how they were breaking any number of laws by their persistent failure to provide a safe and nurturing environment for my disabled child, and that if they wanted to argue, they could bring it on. I said she was being kept at home as being in school was detrimental to her mental and physical well-being.

I got the permission to de-register a lot faster than the maximum six weeks – what a surprise!

Anyway, since then we’ve been de-schooling, which mostly consists of a lot of cuddles, stories and play doh, with visits to the library and the parks. Small Girl has also done a fair bit of what I’d term “school work” in various work books, and on line, but she’s still scarred from the build up of years of sensory overload, so we’re taking it slowly.

And what of Small Boy? Well, he’s had a tempestuous year so far, I think it’s fair to say. His anxiety is still off-the-charts bad, and my state of alertness to the possibility of a meltdown (and omg they are spectacular in their violence and length) puts me on a level (or so it feels) of a bomb disposal cat who’s used up eight lives. My sleep is fractured as I never seem to be able to switch off, I get a ton of headaches, and I am often grumpy AF, but as we head towards the last ten weeks of his school life, ricocheting from day to day, and his insistence that he can manage the four hours a week he is timetabled for, I am excited to know that from the end of June he will be finished with primary school, and from then on, the education of both my youngest will no longer be anything to do with the education authority. And I’m looking forward to learning all manner of new and interesting things alongside these two amazing kids that we won’t allow the school system to break.

Mental health is often precarious in autistic people, whatever their age, and frankly no wonder. The pressure to conform to neurotypical standards is high, and even some of the special schools just don’t “get” it. They might be able to mask, but eventually the mask will slip, and the fallout is bad, often resulting in self harm, low self esteem and more. If Scotland refuses to accept that the ethos of mainstream for all is damaging, then I can’t use my children as a weapon to prove how badly wrong the system is, not if I want them to stand a chance of being mentally sound and proud to be autistically authentic.

I’m no saint, and I often get it wrong BUT unlike teachers who spend so much of their time keeping control rather than imparting knowledge, and then, in Small Girl’s words “making us sit down and do maths” I can hopefully make them comfortable in their own skins as they branch out into learning what enthuses them. Am I scared? Yup, you betcha. Do I think I can do this? Yes I do. Because what I want for them is not a string of letters after their names (I mean, that would be cool) but rather for them to have enough confidence to face the future being proud of what they’ve achieved. If they are polite, and kind, and know how to cook meals and load the washing machine, and sing along to Korean pop music, as well as add up and read, then I’ll consider they’re doing all right.

So that’s us right now. In limbo with Small Boy and his final few weeks of school, and sort-of still de-schooling with madam. But we’re all still here, and the good days outnumber the bad.

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Here they are last weekend, enjoying being outside for once. At the risk of jinxing it, we finally have some half-decent weather.

 

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A Weighty Issue

25 Oct

She lasted seven whole days. And I leave tomorrow, so it was almost the entire duration of my stay. I should have known it would come up at some point.

I was straightening my hair, sitting on the floor in her bedroom, in front of the only full length mirror in the house. I hate full length mirrors but it’s the only one near enough to a plug, so there I was. I sighed, and – I do know I started it – said, “If only I was as fat as I was when I was twenty and merely thought I was fat.”

Now, dear reader, at age twenty I was in fact underweight for my height. Not enough to trigger any concern on behalf of medical professionals or indeed anyone else, but definitely on the skinny side, medically underweight. And yet I still believed I was enormous.

Years of restricting what I put in my mouth behind me, and ahead of me at that time, made me hypercritical of my appearance. Coupled with a growing hatred of my very obviously feminine body from the start of puberty when my favourite jeans would no longer zip as I developed hips, it was a slippery slope to calorie counting, skipped meals and lying through my teeth about what I’d eaten and when. It was control, and it lasted all through my teens and into my early twenties. Getting up super early for school and using the milk I would tip into my coffee to first swirl around the cereal bowl so it looked as though I’d eaten was a favourite trick.

Sucking on Polos throughout the day, oh so slowly until each one was paper thin and then cracked, was another. Chewing gum was a favourite too for a while, but the acid that swirled in my stomach made me give that up. Swapping the Kit Kat in my lunch box for a piece of fruit made me popular and kept the calories down.

I never really thought at the time about what I was doing, but it was – I think – a knee jerk reaction, both to the arrival of definite curves (I went from tomboy stick to hourglass in the space of one summer holiday) and to my mother’s careful insistence from birth that I never missed a meal.

I know she had been hungry at times, and I can’t blame her for not wanting the same for her children, I really can’t. She was a war baby, and suffered quite serious deprivation at times, especially in the food and nutrition department, but her urge to never be hungry again tipped into a rigid control of her own. Mealtimes in our house growing up were absolutely non negotiable, But coupled with that was another kind of control, the one where you ate everything on your plate regardless if you were hungry or not, and you certainly didn’t get pudding until your dinner plate was clear. Anything you tried to leave was frowned upon as a criminal waste.

I can see her point, and it’s not about blaming my mother, because I am old enough to know better. But she did sow the seeds for my need to control my eating habits.

Now, I am the opposite. I have just one full length mirror at home, and it’s partially hidden by a large box I deliberately shoved in front of it. A quick glance to check my hair’s OK is about as far as I usually venture into the world of reflections. That way I don’t have to look at the blob I’ve become.

Obviously, I’m not stupid. I know that fewer calories going in, and more expenditure by way of exercise would pretty much guarantee me some weight loss. But it is not that easy. If it were, we’d all be a perfect size ten or whatever the fuckity fuck we’re “supposed” to be for optimal health and fitness. A hint of defensiveness creeping in here, oops.

I have five kids. The second two were twins. My pelvis became unstable and I ended up on crutches, in agony due to SPD, symphysis pubic dysfunction. Look it up if you’re interested, but basically it means the two halves of my skeleton were attempting to pull themselves apart. Nice huh? The good news is that I gave birth (at 37 weeks, thank you wonderful obstetrician who scheduled me for induction due to “maternal distress”) to two wonderfully healthy babies, a fact for which I will be forever grateful. And I did manage to pull the two halves of my traumatised body back together again with the support of a lovely post-natal fitness instructor.

Move on several years and I had our fourth child, then promptly fell pregnant with number five. I spent half that pregnancy on crutches too. She arrived 14 months after number 4, and my body fell apart. She is now ten and my poor osteopath grits her teeth whenever I manage to make the 52 mile journey to her clinic because I am too sore to keep functioning without her help. She lovingly puts me back together again, and I rejoice in my non painful pelvis until I walk a bit too far, or run about the beach with my kids and undo all her good work.

As well as the five amazing children I have, I also have six that didn’t make it. Not writing that for the sympathy vote – life’s too short – but it is a fact that the rush of hormones at the start of each pregnancy, valid or not, have contributed to the train wreck that is my pelvis. It’s a biological fact. And it doesn’t help.

Coupled with all that, I’m a bit of a hermit. I prefer my own company, that of my kids, or of one other person at a time. And yet I also get lonely. Yup, bit of a mess lol. But at times, I deal with my messed-up head by eating things that I shouldn’t. Possibly an entire packet of them. Oh go on, yes, pretty much always a whole packet.  Biscuits generally, or sweets.

I know it’s destructive behaviour but I have an addictive personality and I find it hellish hard to stop. 95% of the time I don’t enjoy it after the first one or two, and yet I  still don’t stop. This addictive behaviour is one of the main reasons I don’t drink. I’ve been at the point where having a few was dangerously close to tipping over into something a lot worse, so I stopped. This past week I’ve had four G&Ts and that is more than I’ve had in the past two years. I enjoyed them, and now it’s done. Back to tea and water and coffee.

So, back to this morning in front of the mirror. “Well,’ said Mum, ‘X did it, didn’t he?” Referrring to a member of the family who has in the past year shed a ton of weight. I am incredibly proud of him, but it wasn’t easy, changing the habits of a lifetime, and, more importantly, he wasn’t restricted by a body that won’t allow him to walk 10K steps a day come rain or shine. Nor is he an addictive personality type. Never has been. He just made bad food choices.

I actually make better food choices overall. I still do. I just happen to add in a ton of shit on top, which is frankly crazy. But I never pretended to be sane.

It hurt. It hurt that my mum thinks I “just” need to back off on the treats and add in a few laps of the village each day. It hurts that no matter how many times I’ve tried to explain, she just doesn’t get it. It hurts that she probably thinks her daughter is lazy and greedy.

I’m not. I’m really not. There are more reasons than the above for my weight gain, but I’m not ready to share them publicly, and I may never be. But it’s almost never as simple as ‘Oh you should skip the biscuits and you’ll be fine.” Sometimes it is. I know that X had fallen into bad habits and needed a wake up call. He got it, and he is turning his life around. It’s a long road, and I want to join him on that path, but I need support.

I have never been this honest about anything personal. Not even sure why I felt the urge to start writing, but perhaps this might help one person to stand in front of their own mirror and see that they are so much more than the reflection of their lumps and bumps. I know I am. I just need to believe it.

Silent Sunday

12 Apr

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NB. Close up of a card – not my original work and I have no claim to be involved in it.

Gratitude

23 Dec

We have so much to be grateful for. It struck me tonight as we were all sitting down to a takeaway meal of our choice that for many people, even those with so-called decent jobs, takeaways really aren’t an option. Then it started me thinking about all the other things I take for granted and just how lucky I am.

Food – by most peoples standards I guess our family has unlimited food. As dd1 has noted since she’s gone to university, “I won’t ever say there’s nothing to eat again. Just because I might not fancy what’s in the cupboards doesn’t mean I should moan about being hungry when there are so many options.” And she’s right. Since following the frankly rather wonderful Jack Monroe, both on Twitter and her blog (A Girl Called Jack) I have forced myself to think more creatively about ingredients and not to waste anything. I can’t slash our budget as much as I’d like due to small boy’s serious food intolerances, but that just leads me onto another point:

Health. Or more specifically the health services we enjoy. There’s always a story of a disaster and a hospital making a mistake, but then again news is push-button instant these days. I’m sure there were just as many errors fifty years ago but we never got to hear of them. Two of my children have been diagnosed with autism, and although there have been some serious hiccups in the process at times, my family do have that assurance of some support with the challenges my kids face. And let’s not forget the routine GP appointments for the everyday ailments like migraines, tonsillitis, excema etc; a few minutes waiting in a heated room to see a professional who then gives you a piece of paper that entitles you to the correct medication to make you well again. That is pretty amazing when you look at it like that. And being a mother of five children there have been weeks when I’ve seen more of our local GP than I have of my husband!

Family – there’s another one. I might moan about them, in fact I’m sure I do, but I treasure my family, they’re what makes me “me”. Being a mum was always the one thing I wanted above all else when I hit my teens so finding the Right Man (and keeping him -so far!) and having his children has been what I felt I was made for. We don’t have a very close extended family outside of grandparents and siblings but you know something? That’s OK. Other people who aren’t related have come into our family and they mean so much to us that I struggle to think of them as “just” friends. Maybe the saying that Friends are the family you would chose for yourself is never truer with us.

Where I live. I reside in what I generally consider to be the most beautiful part of the universe – the Highlands of Scotland. Nuff said!

Twitter. Not exclusively twitter as I have met some lovely people on-line through other sites, but on Twitter I have found so many parents like myself, just getting from A to B on a daily basis and trying not to lose the plot on the way. I’m not going to start naming names as it would take me far too long for one post, but I think you probably know who you are as you’ll either be reading this, or commenting, or maybe even RT’ing it. I can share their joys, and also their sorrows, and they share mine, and each time we connect I feel a wee bit closer to them and a lot less on my own, as sometimes I can be. I can truthfully say I love my tweeps! 

Anyway, I could go on all night, I’ve barely started. So I’ll just say I am personally very grateful for Christmas, this year especially, as with one child at boarding school and another now at university, this is a precious family time.

I hope you can all find something to be grateful for too. 

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R.I.P

14 Mar

This morning at 8.30 I got a phone call I was expecting but dreading. It was to tell me that a lovely man had died a bit earlier today.

His name was Granda (not his real name but all my kids called him that and for respect of his widow’s privacy I won’t name him). He was 80 and had been frail, and frankly fading, for the last few months. he was rushed into hospital on Tuesday afternoon and I knew he wouldn’t be coming out.

Who was he? My “dad” and the childrens’ “granda” but only sort of. When we moved here over 10 years ago he and his lovely wife adopted us as part of their already large family and all my children have grown up being blessed with more grandparents that the children of parents from a non-divorced background would normally get. A whole extra set of wonderful warm people to tickle them, listen to their stories, bake and knit for them (that bit was Nanna!) and just generally be there and love them. I got the understanding and support that parents can offer an adult child, and the love I needed when my own (quite lovely) parents were, as they still are, over 600 miles away and I wanted a hug or some adult perspective. I love taking Nanna shopping, and helping out with wee jobs as I can fit them around life with a young family. It worked so well.

And now that has been torn apart. My children are wise and know that death comes to us all. They are all very sad but will learn to accept that is what happens in life – no one gets out of death. I worry about Nanna – they were together for 60 years – and I worry mostly because I am on the periphery of the family and as such might not get much of a say. Which is probably right, but I worry that undue pressure will now be put on her to move into the town, away from her memories and her open spaces, and that well-meaning people will try and take over, treating like an invalid and not like a woman who needs to grieve and who will then pick herself up and carry on. She’s tough in a gentle way, is Nanna. Practical, hard-working and philosophical, with a heart as big as a house, and I think, if loved and supported, she won’t need to move, but I am concerned that she will attempt to please everyone else and do what “they” think is right.

Why am I writing this? Who knows. You can’t change it any more than I can, but maybe you can spare a thought for Nanna, and maybe all those thoughts will drift her way and give her the resolve to deal with her loss and to move on with strength, finding the way to live the rest of her life on her terms. Positive thinking never hurt anyone.

Am just about to take M, my youngest, along to the cottage and see if Nanna is back home yet. I saw smoke coming from the chimney earlier so I know someone is there, it might be one of her own children or grandchildren, and I want to pay my respects.

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Silent Sunday

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