Sunday, 26 September 2010

Friends like me.

So, a while back, we went to stay with a friend for a few days. I decided I'd be kind and generous, and brought a bag of fresh mushrooms from my parents' garden. Organic, brown and white, big, beautiful, the finest recycled mushroom compost can provide. And so we loaded the bus, and off we drove, and after a lengthy tour of the country, there we were. And we unloaded the bus, dumped foodstuff in the kitchen, and collapsed in a heap in the sitting room until much coffee had been consumed.

Girls to bed, grown up conversation, civilised meal, more conversation and a rather late night. And in the morning, children, busyness, plans, more food, etcetera and so on. And an increasingly pervasive odour of ancient fish. Being the polite kind of a person that I am, I ascribed it to drains and ignored it. And being the polite kind of a person that my friend is, she too ascribed it to drains and surreptitiously cleaned the sink, scrubbed the loo, and sterilised the dishwasher. And the fish persisted. Until, eventually, in desperation, my friend picked up the bag of mushrooms to clean underneath them. And the bag collapsed, and the fishy smell multiplied, and a thin stream of foul-smelling fluid flowed gently out of the bag and across the room, under cupboards and into packets of biscuits and over the kitchen appliances, carrying with it a tide of baby woodlice.

The gift that keeps on giving.

My friend retaliated by giving me a box of chocolates on her return visit. I'm assuming she didn't know about the whole "Tia's having a madly healthy month or so and actually shedding pounds for the first time in years thing." It couldn't possibly have been revenge by sabotage, could it?

We agreed it would probably be best if I never again brought food to her house.

We've had a bit of a houseparty. My Trojan Mushroom friend for two nights from Thursday, and other friends on an epic journey from the frozen wastelands soggy city of the North to collect a rather special chair from somewhere considerably closer to us for the weekend. We have made the satisfying discovery that there is just space for a cot mattress on the floor of Mog's bedroom (and I do mean just space; to enter the room you have to stand on the mattress), and that Little Fish is very happy to sleep there and does in fact prefer it to her own bed in her own bedroom. We just about have enough sockets for their various breathing devices, and by clamping the door properly we can contain two girls in a bedroom only five foot wide; I wonder how long we could do this for without either of them getting bored or Mog's carers objecting to standing on Little Fish whilst getting Mog dressed? I also wonder what social services would make of me parceling both of them into the smallest room in the house so shall take the opportunity to point out to any SWs reading that it was in fact a purely overnight device despite any inclination to make it longer term. Ahem.

One of those beautifully relaxed mornings on Saturday. A house full of friends, children all pleased to see each other and content to gaze at each other and giggle, and show off to each other and be entertained by each other, and to need only minimal adult attention. Leaving three adults free to sit and chat and drink tea and coffee and eat breakfast and make more drinks and chat some more. And working in a kind of synchrony which had one friend rootling through the 'fridge as another poured muesli,and as I lovingly sliced and toasted some extra delicious bread yet another friend had made for us a few days earlier. I passed the toast across and sat back with more coffee.

And a small, diffident voice asked "May I please be excused from eating this?" And we looked, and realised that not content with the mushroom incident, I had somehow failed to notice the rank mould thickly coating the bread, which had turned a vivid blue whilst being toasted.

We had Tesco Sandwiches for lunch. And, oddly enough, my friend decided to leave before tea on the Saturday. For I am truly the hostess with the mostest. She had her revenge again though; leaving hot chocolate souffles and cream which remaining friend and I were forced to eat last night. It's a tough job, but someone has to do it.

And now they've all gone, and the musical beds have stopped, and the girls are sleeping sweetly in theirs, the cats have settled for the night on the shower bench, and I can hear my own bed calling my name.

Thursday, 23 September 2010

How many hands?

does it take
To make a decent mould
for what we all hope
will be a more comfortable wheelchair?
If that shape's correct, it's no wonder she stopped tolerating the old one.

We saw wheelchair services in May. They suggested we try a Triton. The Triton arrived for trial back in July. We liked the Triton, but it needed a moulded seat for Little Miss Asymmetry. Yesterday was the first moulding appointment. We go back in four weeks for the mid fit. And then two weeks later for the final fit, by which time the Triton which "oh yes, it's definitely been ordered" will hopefully be here. Five months after the initial appointment. Thirteen months after Mog started having such big problems with her spasm. And apparently the service has been improved by the recent changes. If this is an improvement, I don't like it.

Wednesday, 22 September 2010


There's nothing like the hint of a cool snap in the air, the ground gaining a carpet of golden leaves, and the general clunk swish of the central heating kicking in after a few months' leave of absence to get my thoughts turning to the inside of the house and to the joys of cosy evenings curled up with curtains drawn and candles burning.

Forget Spring Cleaning (Why not? I usually do); the weather starts to turn and suddenly neglected corners of my house start crying out for attention. Well, that, the prospect of visitors, and the fact that I could no longer open the pantry cupboard without dodging falling tins and flour-bombs. The realisation that with our new streamlined rubbish collection system (rationed to one wheelie bin a fortnight for general rubbish and one for recycling; interesting with two girls who can between them produce a vast amount of medically-based waste) I will no longer be able to sling out an extra couple of binliners whenever I do have a general sort out was a good motivator too. So, I gathered the essential tools of the trade, and made a start.
One box for the inevitable duplicates; cunningly providing us with cans for Harvest Festival on Sunday too. One bag for hopelessly out of date or else unbearably sticky stuff (there was an unfortunate incident involving a packet of ground ginger, a jar of marmalade and a box of rice cakes longer ago than I care to admit, considering some of the debris remains welded to the shelving and to anything which sits near it), and fuel for yours truly.

Half a shelf down, I'm finding packets with a best before date of 2005. Not great, but hey, flour doesn't really go off does it? I think the powdered milk might have had it though.
And this one is particularly worrying, considering we didn't move here until 2003. Why on Earth did I feel the need to bring out-of-date foodstuffs with me?
I'd allowed myself a generous ten minutes per shelf - bin, donate, or dump on the side, wipe down the shelf and replace. Four shelves, forty minutes?

Four hours later, two bin liners full of the rejects, one box containing eight cans of tuna, three of condensed milk and very little else, the shelves looked more like this.
That's better. And very nearly neatly organised. All the food about to expire neatly stacked towards the front. And a determination to be a better steward, and to use the short-dated stuff first. Of course this means we're going to be eating eleven packets of chicken noodle soup, livened up with some tasty suet dumplings, and finishing every meal with tinned mandarins, but that's balanced, right?


Monday, 20 September 2010

Say What?

Little Fish likes to sing. First there was Mamma Mia, here we go again, my my, how I am your sister". Now she's not so wedded to one song, but comes home from school crooning whatever she's been singing in class. Or nearly.

I did enjoy Sunday's "You are in my tummy, God" (Eternal God). But I think today's offering may have the edge.

"Who built the Ark? No one, No one. Who built the Ark? Bother! No one built the Ark."


Thursday, 16 September 2010

Nature or Nurture?

Tell people that you plan to adopt, and you'll get a huge variety of opinion, whether you want it or not. Some really helpful pieces of advice from people who actually know, and some slightly less welcome information about how adopted children will ruin your life and turn out just like their "real" parents and never be grateful (I'm not asking for their gratitude). And some well-meaning but whittery praisey phrases about how all they need is love and aren't you wonderful for doing it.*

It's the old nature/nurture debate. Either these hypothetical adopted children will take after their birth parents (who must, in the eyes of many people who have never met them, be strangely evil monsters if they aren't parenting all the children born to them), or else they'll instantly manage to switch off their past and become the child you the parent shape.

And there's just enough truth in each cliche to keep them both alive. And of course adopted children and adoptive parents will grow to resemble each other, taking on family expressions and habits and of course all children will bring their own personal quirks into the family, some shaped from early experiences and some from genetics and some from just being individuals.

But, today, I discovered that the Nature side of things has had far more effect in Little Fish than I had ever previously realised. I know quite a bit about her life before she came to me; it's fairly intimately chronicled, and not my story to tell on here. But she's been surrounded by loving arms from very early on, and although we keep in contact with her foster carers, she does not appear to remember living with them at all.

Tonight though, something happened which brought it home to me that she is not and never will be my genetic offspring. Tonight, I gave her her tea. And she ate nearly everything on her plate. And then she handed me the pieces of Toblerone I'd put on the side, and politely asked me if she could have an orange instead.

I'm not sure I'll ever recover.

*Question, if the only thing any adopted child needs in order to turn out to be a well-rounded human being is love, why don't more people - who have infinite capacity for love - adopt?

Tuesday, 14 September 2010


Slippery as her nickname, Little Fish squirms around just outside my grasp. I take hold, and we make contact, and she realises that I really do mean it. And she submits, and eats her breakfast without complaining, or gets her clothes on without screaming, or settles for the night without calling me back into her room a dozen times. And it's great, and I think she's finally learning that I might just actually be in charge, at least some of the time, and I start to relax a little.

And then I notice that she's still slipping away. That I ask her to eat her breakfast at the table, and she agrees, and doesn't scream, but flips her legs around so she's sitting sideways on to the table, leaving a lovely Marmite or Cheerio trail across the floor and her clean clothes. She gets her clothes on, but her pyjamas are stuffed down the side of the bench and left in a puddle of stagnant water from the shower. She settles for the night, but only if I leave the door open.

Compromise? Or control? She's still in control, still deciding how much she'll allow me to have things my way. I don't mind compromise; I'm all for negotiation and thinking problems through and mutual decisions. But I'm not sure I'm supposed to be the puppet on her strings.

So I take hold of her, and draw her in close, and she squirms one little bit of her out from my arms, and suddenly the whole of her is somewhere else entirely, and I'm left holding her shed skin. And there's a still small voice at my shoulder saying "Sound familiar? Don't you do this to Me all the time? The appearance of obedience, a semblance of submission, and I go my own way again even as I say "Yes" to whatever it is I ought to be doing. But, like Little Fish, I like to think I'm doing the right thing; I'm doing most of it, aren't I? I can do it and do that other thing at the same time, can't I?

Maybe I can. But can I do it and expect to teach my daughter what it means to be wholehearted at the same time? I'm not so sure about that.


Saturday, 11 September 2010

Little Fish Would Like To Let You Know

"I did get all my own clothes on today all by myself. And, and, I did be careful and take my clothes off all by myself too! Do you know, I can dress myself now? "

Tia would like to know why Little Fish felt the need to scream for ten minutes that "My button is done up I not managing oh OH OH my button is not undone!" When she eventually stopped squawking I suggested she undid the button. Which took her 30 seconds, after which the shirt was off. But how, why, could she not have joined the dots herself?

Still, a child who can strip herself (mostly), dress herself (mostly), then go to bed, lie down, and go to sleep within minutes is much appreciated. And Mog still gets to have a good giggle over LF's screeches, so I suppose we're all winners really.


Thursday, 9 September 2010



  • Seemingly effortless beauty or charm.
  • A favour rendered by one who need not do so; for example, the company who make Mog's switch apologising for being out of stock of replacements and offering to loan one of their demo models for a fortnight until the new ones come in.

  • A disposition to be generous or helpful; for example the carer who has voluntarily stayed on past her shift's end every day this week to sort out Mog's bedroom, tidy her wardrobe, shuffle the supplies from twelve cardboard boxes into the neatly stacked under bed storage system.

  • A temporary immunity, a reprieve. A babysitter choosing to stay on and take Little Fish to the park to give Mog and I time to unwind after a hospital appointment.

  • The free and unmerited favour of God, as manifested in the salvation of sinners and the bestowal of blessings.

Wednesday, 8 September 2010

I'm learning

I'm learning
  • that six o'clock is too late and bedtime needs to be earlier.
  • that if I can dress Little Fish by rolling her from side to side to pull her trousers up, she can also pull her own trousers up by rolling from side to side.
  • that this does not necessarily mean that underwear will be in quite the most supportive of positions.
  • that CPAP does not stop central apnoeas.
  • that the cuter the video, the less likely it is that blogger will let me post it,
  • and that therefore you lot will not see Little Fish being a very kind doctor with big stickers for good Mummies.
I'm thinking
  • that my parents were onto a good thing having a nice handy utility room where infuriatingly slow eaters could be sent to finish eating.
  • that it's a good thing my brother is not in a position to inform Little Fish about the usefulness of the back of the freezer as a repository for unwanted vegetables.
  • that a closed door really is no insulation against the brain-piercingly loud shrieks of a tantrumming five year old.
  • that having company really helps diffuse the tension when an overtired child does not get everything all her own way.
I'm hoping
  • that things which are improving will continue to improve.
  • that the things which are really horridly exasperatingly awful will not stay this way forever.
  • that she decides to bring her school behaviour into the home rather than bringing this home behaviour into school.
  • that we never cease to find silly things to giggle about together.
I'm also
  • wondering how tomorrow's spasticity clinic will go for Mog
  • trying to work out the feasibility or otherwise of a baclofen pump
  • and wondering if she will actually stop fitting at some point tonight.

Saturday, 4 September 2010

Growing pains

It's taken me a while to catch up with reality, but I've had the growing realisation that Little Fish is not in fact the little fragile baby she used to be. True, she's got a lot of different medical issues, and true there are things she still shouldn't do (horseriding, trampolining, bouncy castles), but if her head doesn't fall off when I swing her by her ankles, it's probably not going to fall off if other people jump up and down holding her. She hasn't broken yet, anyway.

I'm a PMLD parent. I have a child (have had a series of children, actually) with profound and multiple learning disabilities. It's a great way to parent. Any achievement is celebrated. Mog kicks a book off her lap, we all cheer. Goldie shares a chip with a dog, we praise her. A precious fosling works out how to empty the cutlery drawer, we throw a party (and let him bring the potato masher). A child uses words, any words, and we jump up and down and bake a cake, because any word is better than no speech at all. We celebrate not milestones but inchstones. eye-pointing to the television, wayhey, the television will be switched on!

I love it - every tiny thing is noticed. Push a switch and the whole world will open up to you and give you your heart's desire. Grab a packet of mints as you go down the aisle and they'll be bought for you and praises sung for your ability to see and reach them. Flip your arm into a spasm which just happens to catch a woman's short skirt and watch that woman come and blow you a kiss. That's my kind of parenting.

And that's a great kind of parenting for the kind of child who needs it. But Little Fish does not have profound and multiple learning disabilities. And if a child can eat a Cheese String and a pizza and a bag of chips and an apple, that same child can probably cope with other fruit and vegetables and bread without the crusts cut off. And if a child can eat macaroni and spaghetti I'm sure they won't fall apart if they eat pasta swirls, even wholemeal ones.

And a child who can manage school and Godzone and Birthday parties probably should be able to cope without my undivided attention when I'm on the telephone to someone else. And quite possibly does not need a constant Peppa Pig/Charlie and Lola/Nanny McPhee soundtrack to life.

We ran away to a friend's house for a few days. We infested her house with stealth woodlice, but that's a different story. And as I watched, my friend gently but firmly took Little Fish in hand. Little Fish ate at the table. She ate weird bread with funky pate. She ate the pot of jelly she'd insisted on having despite knowing she doesn't like it. She ate without needing music as a diversion, and listened without constantly interrupting the grown-ups. She sat on the toilet without tears, and on the third night, she settled herself to sleep without calling me back a dozen times a minute.

And she had a fabulous time, and didn't want to go home, and can't wait for our friend to come and visit.

And I came home, and thought for a bit, and prayed for a bit, and listened to the parenting tapes I've had for a while, and re-read the parenting book my sister in law gave me for Christmas (and realised again why she might have done so). And I cleared off our kitchen table, and realised that I have been scared to try to sort this out.

Scared of Little Fish's tantrums; she's been the one in charge, not me. Scared that by disciplining her I would undermine her attachment to me, push her away from me and into an attachment disorder. Scared that pushing her eating habits would cause her to aspirate and have that chest infection the SLT keeps reminding me will kill her. Scared that in helping to shape her the way she should be I would crush her spirit. And instead, I've helped her to grow into a child who is charming and delightful and wonderful in public, and who thinks nothing of throwing tantrums, slapping my face, tearing her hair and head banging in private. And I mention her less savoury habits not to show how awful she is, but to remind myself of how confused I have allowed her to get, by not placing the same expectations on her at home as she has elsewhere.

So the times, they are a-changing. We're in boot camp. And it's not fun, for either of us. I have apologised to her for the fact that I've let her run things when it isn't her job to do so. She looked somewhat confused, until she realised I was telling her I was taking back charge.

The nights remain sorted. A new mattress topper makes for a more comfortable bed, with the added bonus of somehow making it easier for her to turn herself from side to side. I've shown her how she can adjust her own mask. And long school days certainly make it easier for her to fall asleep straight away.

And the days? We're having similar numbers of tantrums. Prolonged hissy fits. Her glasses are on the floor more than they're on her face. And everything is taking three times as long as it did before. At least. Tea tonight took three and a quarter hours. But she ate it. All of it. At the table. By the light of the fish tank in the end, since Mog and I abandoned her an hour into her stand-off. I remember my baby brother eating endless meals in the utility room, and sincerely hope he never tells Little Fish how he used to pour his vegetables down the back of the freezer.

I don't want mealtimes to be a battle. I don't want any of our times to be a battle, actually. But neither do I want a teenager who sits passively and refuses to dress herself. And I certainly won't be able to wrestle with an uncooperative teenager if she can't cath herself by then.

I do want a girl who is confident, independent, and secure. And as healthy as she can be. And I am as sure as I can be that stepping in now is going to be the best way to achieve that. But there's a part of me which just wants to sit down, order pizza, and enjoy her.

I'm hoping I can do both without it destroying either of us.


Thursday, 2 September 2010

September Already?

Small one in a big coat, waking early and excited about going back to school. Chattering all morning about not being in Mrs Tucker's class any more, about moving up, about seeing friends and catching up with all her TAs. And then getting quieter and slower as we got closer to school, and "Mummy I am very 'cited" changing over to "Mummy I love you, can I hold your hand?"

Complete surprise when we walked past her old classroom and over to the next entrance. A sudden realisation that moving classes does actually mean moving. And then some reassurance at seeing all her old classmates waiting at the new entrance too. Proper big school now; the whistle blows and the children all line up, and Little Fish lined up with all the wrong children and had to be gently shuffled into her own line.

And then into school; it's a bit tricky to do that when you're trying to drive forwards and look backwards. Finally through the doors and there's "Mrs. Skello" her 1:1 and perhaps this might just be alright after all. One final goodbye wave and off.

More changes this year; Little Fish will be riding Mog's school bus. This isn't the perfect solution; she'll arrive late and have to leave early, but it means Mog won't be dragged out in all weathers when unwell or fitting or in spasm. At ten to five last night it was finally confirmed that LF will only ride the school bus when Mog's school is open, so could I please walk her to school myself today? Not a problem, nice to do so on her first day back I think. So Mog and I had a pleasant stroll to school, followed part of the way by the Grolly-beast whose adventures in taillessness have not yet put her off wanting to travel. We dropped her, we walked home, I sat down to write this, and a very large green and white school bus pulled up to take Little fish to school.

I do hope the rest of the term will work better.


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