Anyone for cloning?

Mog attends our local special school. The hours are 8.40 - 3.10 daily; she leaves by bus at 8.30 and is dropped off first at the end of the day.

Little Fish attends our next-to-local primary school. It is the perfect school for her, and is about half a mile away. Its hours are 8.45 - 3.10, daily.

Anyone spot a problem there?

The mornings work just fine, most of the time, when Mog's not unwell or unable to sit in her wheelchair. The lie-flat chair will help with keeping her comfortable for both of those reasons as we do the morning dash,.

But I can't be at school collecting Little Fish and at home meeting Mog. Mog rides in a bus with seven other pupils, four of whom are wheelchair users. I'm not exactly sure how the driver manages to load eight children, clamp four wheelchairs down, and still manage to be here by 3.15 most days, but he does. Some days the bus is here at 3.10. And, sometimes there's the inevitable delay, a child needs the loo or doesn't want to get onto the bus or is throwing shoes at the driver, and so Mog doesn't land back here until a bit later.

I have to be here to meet Mog; she can't just sit on the doorstep waiting for us. And we have to keep Mog's transport time down to a minimum, as the escort staff don't give medication or do suction.

We live too close to Little Fish's school for transport to be provided automatically. There are no accessible buses going her way, and no company wants to do the job for the money they'd get for such a small run. We've advertised for parents walking our way who might be interested in letting her tag along with them for a small fee. We've approached local childminders. Little Fish's TA walked her home for a while, but had to stop as this meant she missed out on planning time and class staff meetings. As LF's key liaison, it's important she is at those meetings.

So, I've been collecting her early. Running home with her, racing Mog's bus back. And it's worked quite well. It's not ideal; she should not have to miss out on the end of her school day to meet her sister's needs, but it's meant she has been able to get home, have a few minutes to play before starting the whole tea and evening routine thing. It's not been perfect; when Mog's ill LF can stay on at school but then I have to drag a poorly Mog out again to collect her. And LF objects to having to the early departure from the place she loves so much. But it has more or less just about been workable.

It's also been understood this was a temporary solution. With the hope that transport would be available next year.

And now it appears that not only is transport not going to be available next year, but that it is no longer acceptable for LF to be missing school. And she must not be collected early any more. Which is understandable, except that I still can't be in two places at once, and if I could find someone else willing to do the walk, I'd already be using them.

So it seems we have two options, neither one really acceptable. Little Fish can hang around in the classroom and I can collect her late. This is a really kind offer from the staff who support her, and I do appreciate the thought. But it means she gets to watch everyone else leave and then wait. And if Mog's bus is on the slower side, it means she gets to wait and wait and wait. And I can see the support staff getting tired of that. It means we won't get home until later ourselves, which means she won't have time to play before needing food and her evening stuff. And it means that I will have to grab Mog from her bus and trundle her straight off to meet LF, not ideal if Mog gets off the bus in a bit of a state, not great for Mog if she's ill, and not wonderful if it's raining.

Or, we can try and get Little Fish into the afterschool club. Which is expensive. And we'd either be paying for a session we didn't fully use, or be picking her up even later than needed. Every single day. It's mainly for children of working parents, and priority is given to these children. So there probably aren't spaces anyway. And she'd still be late home, she'd still have her evening truncated, and Mog would still have to turn out to collect her.

It's a twelve minute walk with Little Fish, faster if you take her wheels out of gear and push, but that's like taking one of her classmates and shoving them in a buggy. How can it be this difficult to find a solution?

I'm thinking about finding one of these

which might shave precious minutes off the run. If I could be sure Little Fish were always the first out every day, if she could be released as soon as the others go to collect coats, if we could load her faster than we can into the bus, if I could know for sure Mog's bus wouldn't begin to be loaded until ten past, oh and if I could justify the £6000 asking price, that is.

But apart from that I think it's either TARDIS or cloning.

Tia

Waste

Disability is really not good for the environment. Public transport around here is actually pretty good - accessible buses from our doorstep into town, into Oxford, over to the hospital, every few minutes and all day long. Wonderful. Unless you happen to have two wheelchair users in the family. Same with trains; I guess disabled people aren't supposed to know other disabled people and spend time with each other. So, we drive most places. And, because we have two (sometimes three) wheelchair users in the family, we have a rather large bus instead of the small family car three of us could sit in if we didn't need the equipment. And it's mostly just me driving around in it. Not great for the environment.

With medical needs come inordinate amounts of packaging. Mog's feed comes in a tin; one tin lasts 2.2 days. So far, the Guides have absorbed a fair few of the tins; we've made them into drums, stilts, planted daffodils in them to give to old ladies. At home they're pencil tubs and money boxes, storage for the spare little fiddly things you get with flat pack furniture. But I'm running out of options; we've around a hundred spare at the moment, so if anyone wants some nice metal tins with plastic lids (think baby formula tin), please feel free. Bright yellow plastic scoop included as extra free gift.

We put the powder into a disposable plastic bottle; a new bottle each day now although at one point it was three bottles a day. Each bottle gets connected to a giving set. Each bottle and each giving set is wrapped in plastic, thirty of these are posted into a cardboard box, and mountains of wrongly sized ones are stacked on the shelves of my garage. Today I refused an incorrect order; I wanted half the order but did not want the bottles and giving sets we don't use any more. I was not allowed to accept half the order; it was all or nothing. So, I refused the whole lot and phoned the feed company. Who informed me that the boxes I had refused would now be destroyed. Brand new, sealed, boxes of giving sets and flexitainers, all individually sealed and wrapped, never been across my doorway just from their warehouse into a delivery van and back to the warehouse. And now they have to be destroyed because the box has had a sticker with my daughter's name on it and they couldn't possibly just remove the sticker and put someone else's on. They did however manage to catch the delivery man; apparently because they caught him before they got back to the warehouse they were in fact able to redeliver my order and now only half of it will be destroyed. But still - that's sixty pieces of sterile kit being incinerated for absolutely no good reason.

Meanwhile previous old supplies fester in our garage. And those we do use just add to the mass of waste we produce. Bottles into the recycling bin, but our recyclers refuse the giving sets and wrappers. And the cardboard box, together with the boxes from the catheters, and the boxes from the inco pads, etcetera etcetera and so on, pile up. I was taking a monthly trip to the tip, but on our last visit the men in yellow jackets informed me my bus was too heavy and I now need a commercial permit before I can visit again. So that's not happening. I took a few boxes to Tesco, only to be shouted at by a fellow recycler for having too much recycling and not leaving space for anyone else. And now they're taking over the garage, piling up, floor to ceiling and side to side, a rapidly impenetrable blockade preventing me from reaching more useful supplies. It's not disastrous, a couple of our carers are more than fashionably thin, so we just send them in. But there's a distinct possibility they might not make it out again.

And the waste keeps on piling up. Disposable everything, wrapped in disposable layer after layer, paper and plastic and cardboard and more plastic, and some days it feels as though the house is slowly drowning in a sea of wrappings. Plastic waves with packing peanut foam, Cardboard icebergs, drifting across the kitchen, ready to catch out the unwary.

And on a totally unrelated note, the other lesson I didn't need to learn yesterday was that sniffer dogs still prefer the scent of a cat to anything else they might be trained to sniff out. Unless they've been trained to sniff (and chase) cats, which seems a little odd.

Tia

Lessons I didn't need to learn today

Four minutes into a tonic clonic seizure is not the time to discover the rescue meds have been left in playscheme. Sometimes being disorganised pays off however; having misplaced them once before I had an emergency back up bottle tucked into another bag somewhere in the corner of one of the rooms - and I found it before the five minutes was up. How so fast? Because I'd seen it there this morning when hunting for something else I'd also misplaced. Twelve minutes in total; a new record for Mog.

When mixing tube feeds and feeding cats, the correct order does not involve tucking the full feed jug under one arm and then bending over to drop cat food into bowls.

Just because a child is smart enough to figure out that "Meat Wedges" are burgers sliced into pieces, it does not necessarily follow they are sensible enough to be left within reach of a bowl full of dirty crockery.

A sign glued to Mog's footplates reading "Please leave my feet alone!" will do more harm than good, as people grab Mog's legs and move them to read the sign.

School tomorrow, and I say Bring It On!
Tia

Rewind

I had a long, long complaint about yesterday which I never quite posted. And which I've just deleted. Some days are best forgotten. I think I'll sum it up as, eventually Little Fish has to grow out of the "terrible twos" doesn't she? And at five, it's surely well overdue.

There's a fair bit of not letting the sun go down on an angry day; somehow we reset ourselves for bedtime even on the worst of days. And today was a much better and brighter day.

Mog has new shoes. They might look like pink crocheted bathroom slippers to the rest of the world, but she thinks they're shoes and she's thrilled with them. And she's even happier that she can kick the right one off regularly. I'm somewhat less thrilled by that.

Little Fish voluntarily ate a teaspoon of broccoli and a dozen strawberries. I'm not myself convinced about dipping strawberries in ketchup, but there we go. I am however both impressed and infuriated by her ability to store that mouthful of broccoli, eat a plate of fish and a dozen strawberries, lick a cashew nut, and hold many conversations, and then finally spit it out in the bathtub a good hour later. This I could live without.

Mog was also interested in food for the second day in a row, and probably ate the equivalent of a whole strawberry spread out over the course of the afternoon. No choking, and I'll ignore the seizure as coincidence. Denial's a comfortable place to live sometimes.

Little Fish demonstrated her increasing fear of flies, which could make for an interesting summer.

Mog kicked Little Fish around the head as LF sat in the bathtub, thankfully soft pink slippers meant they both just giggled. And Little Fish washed my feet whilst soaking her blister in the bath; I could get used to that.

We visited the Italian Market in town and failed to buy anything Italian. We visited the shop which used to sell ballet shoes (thinking these might work as something soft which Mog couldn't easily kick off in the middle of the road), only to find it has become an amusement arcade thingy. We didn't visit that. We drank coffee in a cafe with my parents, we did a spot of Waitrose shopping, and Dad fixed my rear brake light, hurrah for Fathers!

A large police car blocked my driveway later on, calling on one of our neighbours. And was shortly followed by an emergency drain unblocking van. I'm still pondering the connection.

Little Fish was fiddling with a water damaged iPod; it sat in a bowl of rice for six months drying out but still didn't work or want to recharge. She plugged it in herself before we went out; when we came back it had suddenly managed to sort itself out again. So she's now the proud owner of an iPod touch and Mog can replace the Peppa Pig episodes on hers with more music instead.

Bedtime happened relatively smoothly; neither girl is now constipated and my washing machine is fully loaded. The sitting room floor is no longer covered in bath bubbles, pens, crayons, soggy bits of paper and confetti. There are capital As and capital Os graffittied on one of the tables but they look fixed to stay for the foreseeable future. The kitchen is not so tidy, but it can stay that way until it's a little cooler. The baby fish are growing and the tank is getting crowded.

And that's life in our house today. A mixed bag, but on balance good I think.
Tia

Lazy days

There's something special about doing nothing very muchNot running around to other people's timetables, just enjoying life

and each other.
Tia

Today's parenting fail

Little Fish, eat your beans
No.
Eat your beans.
No!
Eat your beans because I am telling you to eat your beans.
No!
Eat your beans, you need to eat them to grow strong and healthy.
No!
Eat your beans, they are good for you.
No!
Eat your beans, they'll make you fart.
Really??????

Munch munch munch munch buuuuuurrrrp!

Tia

Top Tips

When dropping two girls at a playscheme and then immediately driving off to meet a friend, it is best to avoid forgetting to hand over medical supplies such as catheters.

It is also a good plan, when arranging a rendezvous, not to choose a place with no mobile phone signal.

Whilst preparing children for interesting activities is probably a good thing, it is always wise to check the planned treat is actually going ahead before telling them about it. Flat batteries on school buses will prevent outings.

A day out involving activites which cannot be undertaken with children in tow is likely to involve a lot of climbing stairs. Especially when the plan is "let's eat upstairs in an inaccessible cafe." Living in a flat and being used to taking lifts whilst pushing wheelchairs may mean you have not climbed any flights of stairs for a very long time. Steep staircases are not the place to discover vertigo.

Food, and friendship and one of my favourite places (which is, technically, accessible, but still not the most practical places to visit with a small child in a power chair. Or any small child really). Good times.
Tia