Wednesday, 30 September 2009

Day 3

Scary stuff today. I took the van to be serviced, and drove home in a courtesy vehicle. 4 months driving an automatic and I have forgotten how to change gear. Stalling it three times before leaving the garage did so much to help challenge the mechanics' views of women drivers. Little Fish was delighted to be sitting up in the front, and encouraged me by telling me repeatedly "You a good driver, Mummy, well done another stall is funny for me." Marvellous.

I hesitate to whisper it, but the kittens appear to have entirely overcome their reluctance to use the litter tray. And, cutely, they now follow me around all day, nuzzling my hands for more fussings. I'm reasonably certain they're doing it on purpose to make me feel guilty about putting them in the cattery from tomorrow. Note to self: buy bigger cat basket first thing; there's no way all three will fit in the one we have.

Is this the boringest post on my blog? Probably.

Tuesday, 29 September 2009

Day 2

Slightly less quiet, but happily I've been out all day so haven't had to listen to the noise. Apologies in order for my neighbours though.
A slight panic when the hospice rang to say they had no place for me to sleep; tricky this as we are planning to stay there from Thursday whilst they pour a new concrete ramp/ I had visions of being improsoned in the house or else forced to sleep in the car. Happily they've come up with a flat after all, so I can breathe again.
And meanwhile our little supervisor is on hand to make sure everything is being done properly
whilst eating the all important chocolate spread and ham sandwich, naturally.

A good day today, a day spent sitting talking and eating with friends. So much stress going on in different lives, and the ability to both talk through it and put it to one side and make hideously inappropriate jokes about it; it all makes it easier and more bearable.

Little Fish managed to stay awake until ten past five tonight; progress on last night's half past four. And Mog is sitting up waiting for a carer now. Our cleaner came, and actually cleaned (I must go out when she's here more often; this would be easier if I could actually plan when she was coming), no kitten poo in inappropriate places for the last day and a half (although there's always the possibility I simply haven't found it yet), and a warmly gentle sunset reflecting over my shoulder. Tonight it might very possibly be not only not a bad life, but actually a pretty good one.


Monday, 28 September 2009

only on a Monday

Can I take Little Fish to school, and walk back to find this
Farewell my drive!

Alright; I did have warning that the builders were coming, but after our experiences with Bob I wasn't convinced they'd turn up when they did. But so far, model builders. Not only did they turn up on time, they have stripped and shovelled the garden and driveway without using any evilly loud power tool (important considering both girls were in school and no optional extras here at home today), they did not want a single cup of tea and no one came inside to use the bathroom.

Long may it last.

Sunday, 27 September 2009

A day which starts at 3 AM

Is never going to be good.

And a day which starts at 3 AM when your oldest child calls out in protest at what the cats have done under her bed is definitely not going to be great.

But, a day which starts with a small child in a cot beside your bed giggling, a child who looks you in the eye and squeaks a greeting just for you, whole face beaming with joy that you have finally gotten out of bed and come to say hello, that kind of day is probably going to be a pretty good one after all.

So, I'm declaring 3AM officially the end of yesterday.

Some sadness in saying goodbye to a certain small child - Little Fish waved the car off shouting "see you tomorrow" and had a very wobbly lip when she finally understood we wouldn't be meeting again for a fair bit longer than that.

But lunch in the garden with the extended family, more family persuaded to pay a flying visit next weekend, promised treats galore at Helen House next week, two very affectionate kittens (can't possibly have had anything to do with the plate of roast chicken can it?), cousins playing together in the gentle September sun, and now a peaceful house and a bedroom to myself again. Simple pleasures, small memories, Happy days.

And an empty bedroom - I'm off to enjoy the luxury of being able to lie in bed with the light on. And I wonder how long that cot will be empty and who its next occupant will be?


Saturday, 26 September 2009

Worlds apart

There's a line from Buffy which a friend and I use from time to time - "Our lives are different than other people's". Granted; we're usually talking new and intriguing variations on dealing with poo or unforeseen complications from an overabundance of helpful professionals, rather than giant snake demons, multiple apocalypses and the ability to slay without breaking fingernails. But it's still shorthand for the fact that we're living in a world most of the people living in this world have no idea even exists.

Every so often, my world bursts in on someone else's, and their comfortable assumptions about life are blown apart. They realise, for example, that my child was just like theirs until there was an accident at birth; that not all disability is testable for in utero. Or they discover that the national health service does not in fact provide constant in-home nursing care for every child with a disability. Or that some children won't get better, no matter how marvellous medical advances might be. Hopefully we don't just blow a cosy world apart but also help open eyes to the beauty our world contains.

Sometimes though, it's the other way around - and it's my world which gets cracked. A conversation with someone fairly closely involved in Little Fish's daily life. Who, on discussion, proved not to know the difference between a catheter and a gastrostomy tube (for anyone reading who is similarly unaware, the catheter is for urine, it goes up the same tube most of us wee out of and drains the bladder. The gastrostomy is a little silicone tube which joins the stomach to the skin and lets us pour liquids directly into it). It's not simply that this person spends time with LF nearly every day, it's that I had forgotten these things are not part of most people's lives.

And the other night a friend rang here. And my first thought was that they were ringing to let me know another child had died - one of the five children I can think of right now who are critically ill in hospital or just about hanging on at home, although no one really quite knows how. And they weren't, they weren't phoning about anything serious at all. And I realised that probably, it wouldn't be most people's first thought whenever the phone rang.

I'm not sitting here waiting for a child to die. It's just that having children die is a part of this world I live in - and, thankfully, it probably isn't a part of everyone's world. I certainly hope it isn't anyway.

I had a daughter, and my daughter died. And if I harp on about it, well, know that she's nearly always on my mind. Not always in a world-shatteringly awful abyss of loss kind of a way, sometimes in a lighthearted oh, she'd have loved today kind of a way, and sometimes in a half-guilty, we'd never have been able to do that with her kind of a way. And before she died, I didn't understand the enormity of that loss. I've known other children who've died. I've known other, older, much-loved relatives who have died. But the utter jar, the time fracture when a parent loses a child; that, I hadn't known.

Time passes, as it has a tendency to do. Life moves on; it's tied to time that way. But death, death interrupts both life and time. And death causes time to eddy oddly about life - a phrase, a request, a something; and suddenly that deathlossgriefPAIN is back as urgent and demanding and piercing as it was when it happened, and as piercing as it was before it happened but when the realisation of its inevitability first hit.

And that probably doesn't make much sense. But I think I needed to say it. And having said it, I can step aside from it and bring myself back to the land of the living, where the poo from small incontinent children is still being added to by the piles of poo from smaller undertrained kittens; 4 loads of washing today and two bags of cushions and stuffed toys thrown out and one most precious knitted doll waiting for a Biotex bath in the hope she'll recover. Ground pepper under the furniture does indeed stop kittens pooing under the furniture, but, as the saying nearly goes, you can lead a kitten to litter, but you can't make it sh*t. This house stinks.


Friday, 25 September 2009

Love is

Sharing what you have.
Whether that's a comfy bed or a bath full of bubbles
or simply time and food and conversation.


Thursday, 24 September 2009

Child Collecting

Today someone called me a child collector. They hadn't met me before, they were introducing me to someone I have met before but not seen for a few years, and explained the fact that I had a different child with me by telling them I was a child collector.

I have to say, I was quite insulted by this. Child-collector; it goes with along with baby-farmer as an insult aimed at people who not only make their living out of caring for children but do so at the expense of the children. Think Mrs Hannigan and you're not far wrong.

I was also quite surprised - I only have 2 children with a very occasional part time extra; it's not much of a collection is it? It's less than the 2.4 children the average family in this country is supposed to have.

And then I started thinking about people with far larger families. And I wondered what the woman calling me a child-collector would make of Cindy's 39, or Christine's crew, or Mom to 14's 14? And I thought that if these are the women I'm being linked to, then I'm proud to be a child-collector. I don't see myself as collecting children; I see myself as growing a family. I just happen to do it through fostering and adoption. I can't see myself ending up with 20 children or even half as many; a 3 bedroom flat does limit family size somewhat. I don't think any of these women are child-collectors either; I think they're mothers who saw the need, felt the call, and responded.

So then I started thinking about another woman who could almost certainly be called a child collector in the most technical sense of the phrase. She has collected 44 children, rounded them up from government orphanages and is busy settling them into smaller (still large by western standards but with conditions so much improved) places, fixing what can be fixed through surgeries they said the children couldn't have, educating children who were deemed ineducable, loving children who weren't deemed worthy of love. Is she done collecting? I very much doubt it! But if she is going to add to her collection of rescued children then she needs more support from those of us who aren't already supporting 44 profoundly disabled children. What Sarah is doing is incredible; in the midst of so much need she is finding those most vulnerable, those least likely to be helped by any other kind of funding, and she is changing the lives of her children forever. Sarah has posted all her children's profiles here, along with details of how much it costs to care for those children. And she's asking for help. Help with sponsoring a child, or sponsoring a surgery for a particular child. Help towards the costs of vaccinating the children and getting them proper medical attention. Help towards meeting the day to day running costs of the homes these children are now living in. And of course help towards the costs of rescuing more children. Take a look at some of the "then and now" pictures she's posted. These are children who in some cases were close to dying, neglected, maltreated, starving. Who are now loved and sheltered.

Sarah has more children she knows about who she would desperately like to bring under her care, but she can't do that without financial help either. I know I sometimes look at child profiles here in this country, and it hurts to know that I'm not in a position to offer a home to a particular child with a disability. However, I have the reassurance that whilst that child may be having to live without the security of a permanent forever family, that child will be being fed, medicated, clothed, loved, educated. If it's hard for me, how much harder is it for Sarah, knowing that to turn down a child may mean that child dying before they ever realise how much they are loved? I know she'd be grateful for any help anyone might be in a position to offer.

Which is kind of off the point, but still worth saying I think. The point is, if I am a child collecter (albeit with a very small collection), then, well, I consider myself to be in some truly excellent company.


Wednesday, 23 September 2009

Cat on a cold tin roof

Goway's status in this house has been somewhat confusing for him these past few weeks. The kittens are deferential towards him, and he's really not used to that. An occasional box on their ears to prove his point, and he's then been happy to have feline friendship, the three of them winding around each other and sniffing happily together.

And then the kittens stopped being scared of the people, and Goway's status as top cat needed boosting. No longer was it enough for him to sit on the chair and them on the floor; they were climbing onto chairs and even onto his coveted windowsill. So poor Goway has been searching out ever higher posts.

This morning he excelled himself. Making the most of the fact that he is allowed outside whilst the other two are not, he decided the top of our bus would be a fine spot to look down on them as they sat in the windowsill.
Which was all fine, until he realised he couldn't get down again.

The morning had been going so well until that point - all children dressed and ready, no rogue turdlets, one smallish pile of cat sick but that's forgiveable, and three healthy children all ready for the school run.

And then, losing every remaining shred of dignity, I found myself standing on our ramp, arms above my head, telling one small ginger cat that he'd made his own way up there, he must be able to get back down again, and that if he really couldn't I'd help him but that he had to just move over to the edge first. As it turns out, this cat was invisible to anyone walking past the other end of the van - and, inevitably, the entire world was walking past the other end of the van on their way to school. So, what the rest of the world got to see was one woman in a weetabix stained tshirt waving madly and talking to her invisible friend who was apparently 10 feet tall. Joy.

After that, Mog's school bus being a mere 10 minutes late seemed almost reasonable. The TA kid's buggy held itself together for the march to school, and, joy of joys, LF's 1:1 was back in school today so everything else was back to normal.

Wheelchair maintenance service people are coming to school today to service LF's power chair. What are the odds of them needing to take it away, leaving me with more chairs than hands to push them?

I'd care more, if it weren't for thisand thisand the fact that they're now brave enough to do thisbut only if I sit on the floor.


Tuesday, 22 September 2009

Monday again?

Only one rogue poo this morning which has to be an improvement. And a small child awake early enough to do her homework before going in to school, and three children all fed and medded and clean and dressed and inserted into wheelchairs all enjoying the sunshine waiting outside for Mog's bus.

Mog's bus wasn't early - never mind; I had time to wash up before leaving.

Mog's bus wasn't on time - never mind; time to empty the litter trays again and clear the worst of the clutter from the sitting room.

Mog's bus wasn't 5 minutes late - annoying; I had to phone LF's school to warn them we'd be late. But hey, time to brush my teeth and feed the cats.

Mog's bus wasn't 10 minutes late. Muttering somewhat by this point, I did start to mind.

Mog's bus finally turned up ten minutes after it should have been at school, and we were able to race off to LF's school. Well, we would have been able to race off to LF's school, except that the TA Kid's buggy has broken, and the brake reset itself every 2 minutes as we walked along. This was unhelpful.

Into school, where staff sicknesses are causing more than average chaos .

Come home, late, and race around clearing the rest of the house, muttering again against the cleaner who has decided that "I need you to choose one day and stick to it" means "I'll tell you I'm coming on Monday then on Monday morning I'll text you to say I'm coming on Tuesday". Which is not fine when there's a social worker visit booked for Tuesday morning. Cleaner turns up, I point out to her that I really really do need her to agree one set day, and ask her to start with the sitting room as I have a meeting. Cleaner says it's not a problem because she never listens in on our meetings and fails to grasp the points that a) I prefer the house to be clean before the meetings happen which is sort of the point of knowing when the cleaner is coming, and b) it doesn't matter whether she listens or not, I still don't want other people around when I'm having a meeting.

Phone an Office every 30 minutes trying to track down our officer. Get bounced from her phoneline around the office and am told, variously, "she is in", "she isn't in yet", "she will be in today", and "we may have been mislead as to her whereabouts".

Meanwhile LF's school phone home, asking me to send in her communication book and the workbook she completed this morning. I tell them I did, they say I didn't, I suggest they look in the second pocket of her school bag, and they call back rather sheepishly to explain they didn't know the bag had another pocket. This would be potentially understandable, except that every child in the school has the identical bag - whilst it does explain some of our communication issues, I can't help wondering how many other families have had the same problem...

And this post was interrupted by the SW, who I thought was ringing to say running late. But nope - "just coming through town; do I take road a or road b?"
"Road a"
"oh poo. I'll be a bit late."

There are so very many different forms of poo in this life.

Monday, 21 September 2009

It must be Monday

Small child awake and bouncy at 4, fast asleep again by the time I needed to start the day.

By 7 AM one child awake, changed, dressed, and ready for feed and meds.
6.50AM I empty one litter tray from overnight poo
7AM I empty the next.
7.02AM a nameless kitten soils the clean litter tray. I empty this.
A smell of poo still clinging to the air, I search until I locate a furtive turd hiding under the settee, cunningly buried under an appointments letter. I extract the phone number from the letter, and scrape and scrub and remove the evidence.
7.08AM, a different nameless kitten soils the clean litter tray. I empty again.
7.15AM an older cat comes back inside and makes use of the nice clean litter tray.
7.30AM, the child who is dressed and changed, and by now fed and medded decides to produce another fragrant offering. I clean this.
7.45AM, the delicate scent of cat poo still hangs around the house, but sees to be everywhere, no longer concentrated in one spot. I attempt to coral the kittens in the sunroom in order to open windows and doors to air the place out. This whilst simultaneously waking, dressing, feeding and supervising forgotten homework for another child, and very thankful for the carer who is doing the same (minus the homework) for the 3rd.

Herding kittens is about as easy as catching jelly in a sieve. One cat in my arms, the other invisible. One cat in the sunroom I locate the second. Open door to insert second cat, the first flows through the three inch gap and disappears.

Giving up on this, I retreat to the bathroom so sort myself out for the day. And notice a brown smear under my chin, which, once wiped off, proves to have been the source of the all-pervasive arĂ´me du chat. Cos life's just that good to me.

Finally we catch a break, and Mog's bus is a nice five minutes early, giving me time to round up the other two children and saunter down to school where, in a very sweet moment, I get to witness Little Fish finding her friends - or rather, I get to see Little Fish's friends finding her - a small queue of boys crowd around her, waiting their turn to rub her arm, kiss her cheek, envelop her in cuddles as she preens herself.

And then the school teacher comes out and informs me that LF's 1:1 classroom assistant is off sick, as is the SENCo, and many of the potential replacement staff. They have people who can feed her and cath her but no one to be in the classroom with her, do I want to leave her anyway or will I take her home? Deciding that she's school's responsibility really, and recalling that the SENCo did promise I'd never be asked to take her away simply because the staff aren't present, I opt to leave her, at which point the problem of getting her home at the end of the day arises. No 1:1 means no one to walk her back, which means I'll have to pick her up early anyway.

So now the TA kid and myself are watching the kittens chase a straw around the sitting room floor, waiting for a phonecall from school about some unexpected disaster. Only on a Monday...


Sunday, 20 September 2009

An excess of expats?

Excess of choice perhaps a better description (but not quite as satisfactory as a title).

My brother and sister-in-law, back in the country after a month in Australia, and just for a few short weeks before moving to Tanzania. Hello, yes I'm talking about you. No blog to link to yet, watch this space. And remember, you heard it here first.

And my friends Martin and Hazel, here from Argentina for just a few days.

Combine driving to Hertfordshire to see M and H with being on duty at Scramblers makes for a very disjointed and probably boring blog enty. But given the number of messages I had when I missed posting last week, I thought I ought to put something up here.

Oh - I'll leave you with a thought from Scramblers (church for 3-4 year olds).
Leader "Right, children, today's story is about a man called Matthew"
Voice from the mass of children "There's a boy called Matthew in our kindergarten"
Leader "That's nice, is he your friend?"
VFTHMOC "Not really, he broke my nose"
Leader "Right, children, today we're going to learn about a different man called Matthew".

Combine that with one small visiting child dressed up as Snow White (hello, yes, I'm still talking about your family), one small boy throwing a screaming howling tantrum because he wanted a fake currant bun (and then a nap with his muslin), one small girl crying for Mummy, one large boy shouting just because he can, three spilled drinks and one toddler plumping himself down into the ensuing puddle, the inevitable constant trickle of wee children needing to trickle their own wee, and one thing's for sure, it wasn't a boring morning.

Tired now though - and a silent household meaning that despite the late night (some children weren't in bed until past seven o'clock!), everyone has settled and I should probably join them.


Saturday, 19 September 2009


Three children, three cats, just one pair of hands...

I spent half an hour just now searching for an elusive cat poo, before realising that the aroma was arising from our temporary addition and not from some hidden corner of the room. New child, new smells.

I can't say much about this temporary addition really. Very temporary, very happy (except when ignored), and fitting in very nicely. Definitely cheeky, Little Fish is very pleased to have the company, and Mog is pleased to have someone else to share LF's attentions.

That cats are becoming less and less litter trained as the days go on. Newest attraction for them is the vast pool of medical supplies under Mog's bed. Farewell 25 pink sticks; so much for weaning Mog off suction anytime soon. Thankfully they've not been so interested in the other stuff, but I think we need to find a catproof door (or 12) sometime in the not too distant future.


Wednesday, 16 September 2009

The kittens are restless

The good news is, the kittens are no longer scared of me.

The bad news is, the kittens are no longer scared of me.

And, since cats have the ability to beam thoughts into the human mind through the intensity of their stare (I'm not the only one who realises this, right?), this translates itself into a constant silent stream of demands.

Feed the cats
Feed the cats
Feed the cats.

There seems to be a little fragrant offering in the litter tray. I believe that's your department.
Excuse me, the litter tray. NOW!

Feed the cats
Feed the cats
Feet the cats.

Stroke the cats.

Feed the cats.
Feed the cats.
Feed the cats.

Put the cat down and back away slowly and that way no one gets hurt.

Feed the cats.

There seems to be a puddle in the corner of the room. This is your responsibility. Deal. Deal now please. Deal with it, oh, and then feed the cats.


Tuesday, 15 September 2009

A Mog blog

Despite being ill, it's been a really good day for Mog today.

An appointment with her paediatrician, reminding me just what is so good about this particular doctor. Not usually the doctor I'd go to first with a problem, today he was sweet and charming, gentle with Mog, complimenting her on her dress, open and honest about her various current lurgies, and forthcoming with suggestions about what I should be looking out for, when I should be doing anything more than we already are for her. Just exactly what was needed from the appointment. It might well be that next time we meet I come away frustrated and aggravated once again, so I'm writing this down to remember - at this point, with an ill child, this paediatrican was great.

The visit took Mog's energy for most of the rest of the day, so she rested in the afternoon before starting Brownies this evening. We planned to go along just for 10 minutes then make our apologies due to her illness. But, we went in through the door, and a cluster of girls from Rainbows and church called her over. And over the next 90 minutes, she joined in with the games and the singin. Her sixer found ways of asking her what to write in her new Brownie book, and her Brownie Buddy and another girl scribed for her and drew for her and shared their stickers. One girl pushed her into the circle, two others linked arms and fingers, and a fourth steered her where necessary. All without being asked, all just naturally reaching out , seeing her need and responding to it. And Mog loved it. Huge beaming smiles, lots of kicking and shouting, and a bit of eye rolling at the leaers when they were slower to understand than the other children.

And then home, and a long whingy overtired uncomfortable and unwell evening. But 90 minutes of pure pleasure, joy at being with other children her age just taking part and being present. I'm sure some of the attention she had was due to the novelty factor; certainly it was mostly coming from the girls who didn't already know her. But hopefully as that wears off, what will wear in is the fact that she does enjoy things, does communicate, does like to take part. And I suspect it'll be the girls teaching the leaders; always good to see.


Monday, 14 September 2009

Monday Monday

We had an exceptionally good start this morning. Both cats took themselves to bed in the sunroom last night, so I shut the door on them knowing we'd have a peaceful poo-free night. Little Fish woke up bright and early so no rush in getting her ready. Mog woke a bit rattly but quite keen to be off to school.

Mog's bus came in good time; so despite being delayed right in the middle of those crucial three minutes by a text from a friend, Little Fish and I made it to school in good time. Obeying her instructions, I gave her a kiss and said see you later, and waved her off for her first full day.

I meandered my way home, did the washing up, and wasn't too annoyed by the text from our cleaner changing her day yet again. Some social phone calls, a decent peaceful cup of tea and some kitten fishing all added up to a good morning.

And then the phonecall - "Mog's coughing green, needing lots of suctioning. No, she doesn't need to come home but just thought you should know." And five minutes later, "Actually, I think she does need to come home, can you come and fetch her please?" And so now I have one thoroughly suctioned, nebulized, exhausted, rapid rattly breathing little girl sitting her bolt upright beside me waiting for a doctor's appointment later this evening.

So I'm thinking the rest of this week is probably going to be pretty much written off as far as an empty house is concerned. And next week I have a respite fosling in. Still, I suppose it gives me an answer for all those people who ask "Whatever will you do all day now?"


Sunday, 13 September 2009

Thoughts from the week.

From a youth group leader "I'm all for integration, but..." But it's complicated, but she'll scare the others, but she won't be able to do all the things the others can do, but she's poorly, but we do quizzes and she can't join in, but the others will be upset, but none of the others have their mums stay with them.

We start on Tuesday.

From a training on safeguarding children with disabilities. "These children do not have disabilities, they have impairments. It is society which is disabling; remove the disabling environment and the child will not be disabled any more'"

Hmm, so my child can't hold her head up; can we switch gravity off please?

I get the social model of disability; I really do. I'm all for removing barriers to facilitate integration. Absolutely ramp those steps, lower those light switches, raise those tables, adopt inclusive games and switch that light to a non-glare one. My daughter is still blind though; however you adapt things, she's still not going to be able to see them. And ramps are great, but pushing a wheelchair still takes more effort than walking, just being upright takes more energy; the ramps don't cause the disability to disappear, they just mean it's less of an inconvenience than it might otherwise be.

It's dishonest to pretend the only barriers are those imposed by others, or by the physical environment. Learn the child's communication in order to understand what they are saying, give them a voice to protect them from abuse. Marvellous. But what about those children still functioning on a newborn level? How about those children for him alert newborn would be progress? All behaviour may well be communication; but it's not exactly on a par with "That man hurt me" . Of course we should be listening to non-verbal communication, we should be giving children who have something to say a means to say it. But we should not be brushing off those children who are still pre-intentional communicators. It's dishonest too to pretend that giving a child a single switch is giving that child a voice. It's giving that child a means to interact with their environment surely, and it's not a bad thing, but it isn't going to magically protect that child from abuse.

"We need to teach children no one has the right to hurt them". "Children must have the right to consent to medical treatments". "Children should be taught about good and bad touching" Fine - but what about the child who needs either painful daily physiotherapy treatments or else will have to go far more painful complex surgery? Perhaps that child can make an informed decision; I've certainly seen an intelligent 7 year old make such a decision for themselves - and not the decision the parents wanted them to make. But how about when that child is 2? How about when that child has an extremely limited understanding of the world around them? Are babies with congenital hip dysplasia consulted before being put into hip spicas for six months? And good and bad touching - how intimate is the giving of a catheter or a suppository or a pessary? If that's what you're used to, what's a bad touch? Daily injections? "Children should not be restrained." Car seats? Straps to prevent the child from falling out of a wheelchair? Helmets to prevent head injury during a seizure?

Where along this route does acceptable end and abuse begin? Arm gaiters to stop the child punching themselves in the face? Arm gaiters to stop the child punching someone else in the face? straps on a wheelchair to prevent the child from falling out? Straps to hold the child in a good position? Straps to prevent the child from getting up and walking around? Cot sides to prevent the child falling out of bed? Cot sides to prevent the child crawling out of bed? Cot sides to prevent the child escaping? Medication to control seizures which has a heavily sedating side effect? Medication to control pain? Medication to sedate? Medication to knock the child out? Who decides?

Whatever your feelings on the acceptability or otherwise of any of these things, someone somewhere is making those decisions all the time. It isn't enough simply to say that society's barriers can be changed and removed and that if everything is made fully accessible there is no disability. Glasses don't give a blind child perfect vision. Hearing aids don't give a Deaf child perfect hearing. Wheelchairs are not the same as a functional pair of legs - and the legs/wheels/ramp scenario overlooks the fact that a physical disability often doesn't simply involve the legs.

It places a huge burden on the disabled child/child with disabilities/child with an assortment of impairments/child with special needs/whatever the correct term is this week to be expected to conform. There's a ramp, allergens have been removed, there's a loo with a changing bench and there's a table big enough for your wheelchair to fit under. Bingo! Now you're not disabled, you're just the same as all the other girls and boys in your class. What do you mean it's tiring holding a pencil and the other kids look at you funny if you use a keyboard? You have a helper, how can it possibly be a problem to ask her to pick up the things you've dropped rather than kneeling down to pick them up yourself like the other children do? We've told you it doesn't matter that your feet don't fit into the school shoes, no one minds you coming to school in slippers. And of course the other children are interested; they want to know why you need that wheelchair; answer their questions and they'll get used to you. Yes I suppose it is rude to stare but it's rude to point it out too; and you need to get used to it. You just have to put up with that, of course they'll want to have a go at pushing you round; it's fun. Come on, who wants to be the special helper today?

Which wasn't exactly where I intended to go with this post. But I'm listening to Mog cry, and cry, and cry. She's seven. Most seven year olds do not cry and cry like this. Most babies don't cry and cry like this. She's not feeling 100%, she's tired, she's sore, and if she lies on her back then she drowns in her own saliva. So she's propped up on her side but that isn't how she wants to sleep, so she's cross. And she's been upset so long her evening meds have lost their sedating effect, and she hasn't noticed that the painkiller should have kicked in by now. She's actually now crying in her sleep; when she gets like this there is no comforting her. I could pick her up (giving her a seizure) and snuggle her in to me but she is beyond human language at the moment; gone back to that utterly distressed place she used to live in as a baby, and where she retreats to whenever life gets horrible. And I'm sitting here chewing over more and more "We are failing our children with disabilities by assuming they are incapable" soundbites, and thinking that yet again, those children with the most complex disabilities are even more excluded from things as the world slowly becomes more inclusive of those with milder or less global disabilities. I am angry; how dare someone tell me my child is not disabled. I wish Mog had been there; if she'd been alert then she'd have given them the stink-eye, and if she hadn't, well then I'd have challenged them to find a way of including her in any meaningful way in what was going on.

A pause; Mog has just had a heavy duty dose of sedative; it, some gentle music and a light show have achieved what my voice and touch could not, and she is settling to sleep. I wonder how most seven year olds fall asleep? This may not last; the kittens are intrigued by the lights slowing on the ceiling and are attempting to catch them.

And a happier thought. Communion.

Let us give thanks to the Lord our God.
It is right to give thanks and praise.
It is indeed right,
it is our duty and our joy,
at all times and in all places,
to give you thanks and praise,
holy Father, heavenly king,
almighty and eternal God,
through Jesus Christ our Lord.

Therefore with angels and archangels
and all the company of heaven,
we proclaim your great and glorious name,
forever praising you and saying

Holy, holy , holy Lord,
God of power and might.
Heaven and earth are full of your glory.
Hosanna in the highest.

Standing in a church, with the company of the church, and The Church, and the full company of heaven. Centuries of tradition, a real "When we've been here ten thousand years, bright shining as the sun, we've no less days to sing God's praise than when we first begun" time. Ageless; a glimpse of infinity. Comfort in the well-known words, tweaked though they get from time to time but still central to the service. A glimpse of eternity; visions of seried rows of angels, something out of Revelation perhaps.

And comfort outside church too; the words carrying beyond communion, beyond the moments it takes to share bread and wine, carrying the weight of two thousand years and more, The full company of heaven; all those who have gone before, all joining with the praise and the worship, all being in Communion far more than we can ever hope to be here.

It is our duty and our joy; at all times and in all places. It's easy to praise God for a beautiful sunset, the day ending in a blaze of heaven's reflected glory, autumnal leaves glowing golden brown, the scent of apples and cinnamon rising from the oven. And how can I not join in that praise?

It's harder in a spiritual winter. Coldness, loss, death, separation, suffering, loneliness, isolation, fears and worries all crowd in. But praising, I join not just with the angels and archangels (and I'm not sure that I have much experience with angels), but with the full company of heaven. Everyone who is, and who will be, in heaven. That full company of believers, dead, alive, not yet brn. Friends, family, heroes, the full works. It's an awesome thought. Not my own effort, but joining in unity, in harmony, in complete understanding and perfect love.

Forget the pearly gates, forget the floaty nighties and the harps, forget the image of Father God looking like some Greek Ancient, and forgetting all the imperfections - joining in with praise and worship is to make that heavenly connection here on earth, even if only for a minute. It must be an interesting sight. All the different denominations, so many people convinced theirs is the only right way, charismatics, evangelicals, reformed, orthodox, roman...those whospeak in tongues and those who are convinced glossolalia is demonic, and somehow through all the imperfections a glimpse of the Truth.

Stepping out of church, bringing that Truth home for the week. It's harder. But it makes everything else so much easier. It makes me realise the pettiness of the earlier part of this post, and makes me consider deleting it, before deciding to leave it up there in the interests of being real, not a polished version of myself. And it's a Truth which helps me see things not just through my own eyes. But I still don't enjoy scrubbing poo out of the carpet.


Saturday, 12 September 2009

The phantom crapper strikes again

Oh the joys of kittens. I wouldn't actually mind quite so much if they'd actually come up and say hello occasionally. At any time other than 4AM I mean. But although Gotcha's getting pretty bold, Grolly just sticks her head around the door and meeps until I empty the litter tray. They've both found new hiding places; people got too interested in their bolthole behind the freezer so have found somehere a little quieter. I have no idea where.

Further joys; two freerange kittens means no catflap for Goway until further notice, so there are three possible contenders for post of phantom carpet-crapper. Carpet-crapper. With lino all over the house, why do they choose the only decent sheepskin rug as a nice alternative to the litter tray? Readers of a timid persuasion will not want to know what I found in the hood of my raincoat when I came to put it on before racing Little Fish to school on Thursday either.

I have resorted to bribery in my attempt to entice the little beasties out from wherever they are hiding. This is working quite well with Gotcha; he even rubbed himself up against me earlier today as well as indulging the girls in a prolonged round of fishing for kitties. Turning his nose up at the turkey slice, he did consent to eat a morsel of salmon from my knee, although only if I didn't look at him or move my hands in any way. But total silence from Grolly. Gotcha has started picking out his own armchair and informing the rest of us it's his. He's taken to rolling about in the sunlight, chasing his tail, and generally indulging in being an entertaining kitten, as long as none of us move in his direction. But Grolly has clearly found a hideyhole even more effective than the back of the freezer, and only comes out in the wee small hours.

They've been here a week now; and Little Fish has finished her first week of school (nice segue? A little laboured perhaps). She's made a friend; his name is Archie and she's been telling me all week how he shares the name of our friend's dog. Archie the boy seems to be more of a hit than Archie the dog; not only does she tell me how much she likes him, she actually tells him too andlets him hold her hand. There were tears on Friday when they both realised they wouldn't meet again until Monday. Sweet or worryingly fast; I'm not sure which!

And now one of he advantages of school; it's five o'clock and a small person beside me is saying "I really tired, Mummy, I go to bed now and have a big cuddle in the morning. Is that a good idea? Or not?" Sounds just fine to me, Little Fish.

Friday, 11 September 2009

Three minutes

Doesn't sound very long does it? Unless you're waiting for a train, or trying to hold your breath. But it's the difference, for us, between being nicely on time for school, or being late. You can't run with a power chair; top speed is a brisk walking pace, and that's that - unless you want to waste valuable seconds manipulating the levers to put the chair into manual, and then put your back out pushing a chair designed to push itself.

Three minutes is how much earlier the bus came today rather than yesterday. Enough time to kiss Mog goodbye, wave at the drivers, and then walk Little Fish to school. Enough time to catch up with other children also being walked to school at the same time. Enough time to arrive and stand somewhere in the middle of the drop-off queue.

Three minutes later, and we are struggling. Mog gets abandoned at the bottom of the ramp once we've ascertained that the vehicle reversing down our cul-de-sac is indeed a school bus and not the bin men or a delivery lorry. We meanwhile walk briskly, me pulling at Little Fish's joystick, trying to squeeze out extra speed, knowing this is futile but driven to try. It means we sit at the traffic lights and count the seconds before the green man lights up, we huff and puff our way down the road watching the wave of children in red recede ever further into the distance. It means we are last in the queue, or arrive after the queue has gone in. Children in the early stages of forming alliances with new classmates choose their partners before we can roll through the school gates, and the corridor is crowded with children saying tearful farewells as we try to reach the coat pegs.

And yet; it's three minutes. It's just three minutes. It's the time it takes to clamp Mog into her bus and drive off again (I know this, because it also takes us three minutes to get from our door to the traffic lights and when they're against us, the school bus catches up). It's the time it takes for a parent, earlier up in the bus pick-up timetable, to fasten a coat and tuck a note into a school bag. It's the time it takes for another child on the bus to pause and tie their laces. It's a set of red traffic lights, a queue at a roundabout, a windscreen needing to be defrosted before the driver moves off.

It's not late. It's enough time still to be at Mog's school (just) before the start of the day. It's just not quite enough time for us to get to Little Fish's school, or not with any kind of dignity. And I'm not sure what to do about that, short of asking wheelchair services for a faster power chair.


Wednesday, 9 September 2009


Community is:
  • walking your child to school, to the same school you went to as a child
  • stopping on the way back to chat with a woman who watched you grow up, who remembers you still (and occasionally treats you still) as that child just starting out in school
  • opening your front door to a friend, and finding that friend talking to one of your old school teachers
  • needing someone to talk to the Guides about the history of Guiding, and knowing at least three women who could cover at least 60 years of it from personal experience
  • having a social worker for a babysitter, one who knows what the training evening you are about to attend entails, and who brings you chocolate to aid the concentration
  • sitting in a coffee shop with friends, discussing the unthinkable made reality, crying one minute and laughing the next
  • knowing the family who moved into your old house, and the family who moved into their old house, and having a quick chat about it all in the child-queue
  • changing things quietly in order to accommodate a child who happens to have particularly special needs
  • a friend taking the time on her own back-t0-school shopping trip to find school trousers for your own small child
  • a different friend calling in to help fold a tent
  • knowing that there are people around who will drop as much as they can and help out in whatever way they can, not worrying about the ways in which they can't help.
Community is not perfection, it is human. It is not a formal structure, but a spider's web of relationships, with love and acceptance in the middle, and a somewhat messy but strangely beautiful complicated pattern of friends, family, professionals and well-meaning passersby, all linked, all hanging together by a thread, and all somehow more than the sum of the individual parts.

And for today, I am pleased and proud to be a part of this community, a community which can't be defined in any simple way, not just friends, not just family, not just Christians, not just families of children with special needs, just, community.


Tuesday, 8 September 2009

fishing for cats

They're getting bolder. I wouldn't say brave, exactly; they're still more than keen to hide behind the freezer all day long. But the sun sets, and the kittens cry for attention. They don't want to be touched, and are very very clear about that. But they do want fuss and attention.
And they do want to play with the teddy on a string.
They really do
Even if they don't think they do
Grolly is above such things. She prefers to sit and be beautiful. And meep and cry until I look at her, at which point she prefers to become invisible. Gotcha just wants more teddy on a string, please.

They have both nearly come for cuddles tonight. One thing they do have in common; a united dislike of this keyboard. I pick it up, they fuss and fidget. I put it down, and they bolt incase I might try to pick them up. Here's the scary thing - Grolly is the smaller of the two. If she's this big at 5 months
whatever size will Gotcha be as an adult? At thisrate, I may have to move house just to accommodate the cats!

And as I write this, they've both meeped goodnight at me and gone baco to the sunroom and the safety of the freezer, leaving me with a nearly-licked finger, and something very smelly underneath the settee. Best go and sort it really.


Monday, 7 September 2009

Schoolbag in hand

Schoolbag in hand, she leaves home in the early morning
Waving goodbye with an absent-minded smile
I watch her go with a surge of that well-known sadness
And I have to sit down for a while.

Well. I would have sat down for a while. But life had other plans - she started school at 8.45, which stretched to 9.15 once I'd done her first cath. Walking home feeling vaguely sentimental about her first day in big school, my big grown up little girl. My reverie interrupted by Mog's school nurse on her way to work, then the girls' OT on her way into work, and finally destroyed altogether by the sight of weeping mothers walking in the opposite direction, having clearly just dropped their own precious little big children off at the other local school.

So home, and just time for half a cup of coffee before back to school for the next appointment. A now wheelchair, just for indoor use in school. A fantastic wheelchair, with possibly 7 years' of growth in it. Definitely massive. And took 1 3/4 hours to set up, so once she was all set, she had just 15 minutes left of school before it was time for me to pick her up again. So I signed myself out of the main reception and walked slowly around to her classroom, editing her school dinner menu as I went, crossing off the foods she can't eat, and being pleasantly surprised at how many meals that leaves her.

Home and an afternoon of cuddles and snuggles, before "I am really very tired Mummy" at 5.20. And fast asleep by 6. That's after one half day, one half day where she spent at least half the time lying on the floor next to me as the wheelchair man bolted different bits of her new wheelchair together. Fulltime could be interesting.

Meanwhile Mog came off the bus in a bit of a state, eyes rolling, breathing like a drain. Lots of suction later, she was clear and laughing and beautifully happy. For about 10 minutes, and then the bubbles started building again until she was drowning, more suction, singing and laughing and clear, then a slow build up and more bubbles and more drowning....Now fast asleep but sitting upright in an armchair for the second night in a row. Actually breathing beautifully now, if a little quickly. I wish I knew what was going on with her. We see her paediatrician next week, what's the betting this will all mysteriously clear up the day before we see him, coming back with knobs on the day after?


Sunday, 6 September 2009

Good news, bad news

The good news is, I have found the cats. Two large kittens can squeeze themselves into the 3 inch gap behind the freezer. They're now safely shut into the sunroom with food, water, and litter, and with a nice cosy freezer to snuggle up against. This gives Goway the run of the rest of the house, and means he can have his cat flap all night.

The bad news is this means our cleaner won't be ironing tomorrow. More bad news; Mog has decided breathing is optional when lying in bed. The only thing worse than listening to your child's hoarse raggedy breathing is not hearing your child's hoarse raggedy breathing. She has now settled in her armchair, after an interesting session with an overflowing suction pump. Question for others with the snot hoovers, does the fluid content always smell like stale cabbage, or is that just Mog?

More bad or at least irritating news. Trousers we have, shoes we have dispensation not to have, special embroidered jumpers and cardis we have, but it has only just now occurred to me that since Little Fish's new school does not require embroidered polo shirts, I didn't actually buy any. So whilst most of you might be wanting a warm day tomorrow, I'm praying for rain and coldness, to disguise the decidedly unsmart wrong-school-logo'd shirts she'll be sporting under the smartness of everything else.

Wish I could find my camera; I'd like to mark her first day at school and this phone won't do that properly. I'll settle for just getting her there on time with most of what she needs though.



I would overoad you all with cute photos of very very cute kittens. But...the kittens have disappeared. Last saw Grolly at 9 and Gotcha at 11. They definitely aren't outside, but apart from that I have no idea where they might be. We've taken much of the house apart to look for them with no success.

Meanwhile, Little Fish has gone off to bed early as she starts school tomorrow, and Mog is rattling her way through a shower now. I'm hoping the catten will come out when the house is quieter.


Saturday, 5 September 2009


and Gotcha
Both cats are nearly brave now. Both of them ha ve met Goway and ignored hi,. And both have had a cuddle, although that wasn't entirely voluntary (on their part).


interesting times

Sweetness; Little Fish and Mog are still heavily into Mamma Mia and insisting on it being played almost constantly. Little Fish sings along and Mog provides the backing vocals. I listened in more closely, impressed with Little Fish's grasp of the lyrics. Until I realised what she's actually singing is "Mamma Mia, here we go again, my my, how I am your sister".

Kindness; a parcel this morning containing four pairs of fluffy socks for Mog's collar.

And quite possibly madness;A visit to "just look" at a litter of Norwegian Forest Cats developed into a trip to several cash machines and the addition of these two beauties to our household menagerie. Two cats who can't go outside for another 12 months, one queen and one tom, both un-neutered and neither old enough to be neutered yet but the queen possibly mature enough to start calling any time soon. And two kittens bigger than our fully grown Goway.

Life could get interesting!

OK so the queen is silver and blue, and is going to be known as Grolly the Grey. Any suggestions for the tom? He is going to be a big fat fluffy cat in about 4 years' time. And he needs a name which goes with Grolly and Goway.


Things you'd think I'd know by now.

  • Never argue with a child who says she's going to be sick.
  • Leaving a child asleep until the very last minute will result in the teacher arriving early whilst child is still in bed.
  • Forgetting to book in any hospice respite at all between May and September will result in being too tired to remember to book any hospice respite.
  • Sitting a child in a fancy armchair then giving her a chocolate spread sandwich is not a good idea.
  • Trying to make decisions before the 2nd cup of coffee will result in poor choices (see above).
  • Not writing things into the diary immediately will result in appointments being forgotten
  • Leaving buying school uniform to the last minute will lead to problems, especially if you are buying uniform for the very smallest and therefore newest members of the school.
  • When the first 27 people you speak to are all idiots, they are quite possibly not the ones with the problem.

Friday, 4 September 2009

Waking up is hard to do

Some mornings I think Goway has the right idea. He's taken over this little hidey hole behind the computer; it must be warmer than his previous spot in Mog's wardrobe. Warmer, but less potential to scare carers; nothing like reaching into the back of the cupboard for a pair of socks and finding something warm and furry and moving.

I am still sorting washingand tentagefrom camping. Every time I get the tents nearly dry, it rains, and I have to wade out and empty three inches of water from on top of them, turn them over, crush the snails and hope this time we'll be lucky.

This morning Little Fish's new teacher is visiting. Excellent timing, I thought - our cleaner was due uesterday and we had already made arrangements to be out of the house from mid mornung until bewdtime. Except that things just don't work out that easily, and our cleaner is now coming this morning instead. And probably at the same time as the teacher. So this morning I have been running around (I say running; I have been plodding. Picking one foot up and trying to remember to put it down before picking the next foot up, occasionally forgetting to pick either foot up and wondering why I am not moving) trying to convert the house from laundry/squat to something more closely resembling the ideal Foundation Pupil's house; books and puzzles and toys visible but shelved, floor all mostly accessible, and a rug pulled over the inexplicable raw-pea-and-playdough stain in the middle of the sitting room.

The only thing missing is one small childHer teacher due in fifteen minutes, she is still fast asleep and not stirring even when I dump the contents of the rest of the house in her room knowing I can close her bedroom door once she's up make gentle noises around her. I suspect her teacher will probably want to say hello to her and she'll have to be out of her bedroom for that to happen, see above comment re: contents of the rest of the house , so with a second cup of coffee on board and a third being brewed, I am off to try to convince her she needs to get moving.

Wish me luck.

Thursday, 3 September 2009

Because we just don't have enough doctors in our lives

Today we added another one.

Drive to the orthopaedic hospital, calling at Mothercare on the way to pick up some uniform trousers for Little Fish. Only pairs they had left were age 5-6; these will fit her comfortably in about 3 years time but at the moment are as long as she is. They'll just have to work; she doesn't walk, so does it really matter if her feet are absent under rolls of grey polyester?

Park at the hospital, and check in a satisfying 15 minutes before our scheduled appointment. Ask whether we need an X ray and on being told no disappear for a drink. Come back to a receptionist avoiding our eyes and a sheepish nurse handing over an X ray form and pink identifying slip.

Trundle down to X ray where Kittle Fish has one of her finer tantrums at having to wait behind the glass as I hold Mog onto an X ray chair. Wait for the machine to be fixed, try again, repeat screams. Beg radiographer not to try to entertain LF as this makes the screams louder. Plead with him NOT to pass her a bottle of cranberry juice knowing from experience what an unpleasant stain it makes once thrown.

Back to Outpatients and then to see the Doctor. not a consultant, not a registrar, but a "Fellow". He takes a history, asks me if Mog can talk, Mog says yes, I point out to him how Mog says yes, and he asks me again if she can talk. Mog switches off, he switches on the computer and shows us this fine Xray, pointing out the curve, which is apparently 29.5 degrees. 30 degrees is when they would start one intervention, 40 another, and beyond that we are talking surgery apparently. He disappears to find a colleague.

Nice chap this; he gives us his secretary's phone number, tells me there are no silly questions, and tht we should phone any time we like. Both doctors get very excited about the presence of both girls in one family until I dash their hopes by revealing the adoptive relationship.

To brace or not to brace; this is the question.

And the answer seems to be, not, or not for now. Review in six months unless things change sooner. The standard warning "this will get worse as she grows, it's inevitable", but much praise for the wheelchair and a recommendation for her to be in it as much as possible.

Handily, a spine Xray is also a chest Xray, and the doctors had a good look before telling us her chest was clear. Good news this; she is coughing for England and needing suctioning ridiculously often and for no apparent reason. Whilst a chest infection would give us a nice neat explanation I suppose it's good she doesn't actually have one.

So, no chest infection, scoiliosis yes but not worrying at the moment, a nice "please call me" doctor; always useful, and arrived home just in time to catch a Community Children's Nurse clutching a big box of suction catheters. Excellent.


Wednesday, 2 September 2009


I have just spent an evening at a housegroup social, at the end of which I now feel officially ill-informed, dangerously undereducated, ridiculously poorly read and frightfully young. I think the high point in my conversation was pointing out that although "another piece slotted into life's rich tapestry" may indeed sound more poetic than "another piece slotted into life's grand jigsaw puzzle" you can't in fact slot pieces into tapestries. Or not easily.

With conversation ranging from Ancient Mesapotamia through WW2 to Uganda pre-Idi Amin, people arguing over the best way to drive from Nairobi to Tanzania, reviews of Morpurgo's War House and assorted Christian Literature, conversations starting with various books and leading to the converser's personal acquaintance with the author (or subject) of the book, all I had to do was sit back and sip my tea. Refreshing.

I wonder if I'll be as well-informed and generally interesting to listen to when my own children are my age? Probably not if I don't make a start now. But hmm, locate a copy of The Wild Gospel, or have another round of Bejewelled?


Tuesday, 1 September 2009

Ain't no coffee strong enough

Got home yesterday and found a card from a friend in the post. "Where there's cake there's hope." But what when there's no cake and no energy to bake it?

I am tired. Very, very, takes-me-five-minutes-to-think-about-standing-up-for-long-enough-to-put-the-kettle-on-and-five-hours-to-reach-across-to-switch-on-the-computer tired. Six loads of washing have been processed through the machine. Four of these are currently outside, along with two almost dry tents. Another five loads of washing are waiting lined up by the washing machine. And I have just noticed that it is raining. Make that another four loads of rewashing, plus two very wet tents, please.

I am not doing another Guide Camp without help.



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