Reader Question

Claire says "A 7 year old asked me "Why are all the children on Mr Tumble sick?"

I wasn't really sure what to say but said "They aren't sick, some children take longer to learn things, find it hard to talk,or can't hear,sometimes they talk with their hands." Then we talked about the signs we knew and practised them.

Any other ideas?"

And I thought "hmm, not blogged properly for a while, got lots of things I ought to be blogging and lots of reasons why I haven't, but I can at least give our perspective on that."

And then I looked at Claire's answer, and decided I probably couldn't improve on that anyway - a pretty perfect response!

So then I thought I'd ramble on a bit instead, and maybe something sensible might sift itself to the surface.

My girls aren't sick. Except that of course Mog is quite often pretty sick. But even when they're well, they are still disabled. Still have special needs, are still multiply impaired. Pick your own term. We live in the UK, so that won't be handicapped; acceptable in the USA but not here. It also won't be retarded.

A few weeks ago, the Little Princess surprised me by saying something I've never heard her say before. "I can't do that, I'm disabled." It surprised me, not because I don't think she sees herself as disabled, not because we don't use the word disabled, but because I've never heard her use it as an excuse before. As it happens, she was trying to use it as an excuse to avoid doing something she is perfectly capable of doing (taking something through to another room for me), so my instant response was "there's nothing wrong with your hands, pick it up."

She's struggling at the moment. Bedtimes and safely strapped into the bus when I'm busy driving times and heading out of the door when it's too late for a proper conversation times, she drops in a wistful "I wish I could walk." Or "I wish I didn't have to have all these tubes and could roll over at night." And occasionally an "It's not fair." And then at other times I'll here her muttering to herself as she tries to sort things out. "Mog can't do that, acos she is disabled. Her arms don't work so she is in a wheelchair. But I am disabled. But I can do that." She is not like Miss Mog, and Mog's friends. And she is not like her schoolfriends and Brownies either.

We have a wonderful world of Special Kids friends; where else can you go camping and have enough children with additional needs gathered together to need heats for the Wobbly Walkers race, and to need to expand the width of the race track for the Power Chair Users race? Where else will you find four children playing together, and have the fourth come running back to her parents begging to borrow her sister's spare wheelchair because she's the only one without a chair to roam around in? If it comes to that, where else will you find six families in a row all running blenders to liquidise meals for their tube fed children, several dozen siblings all accustomed to ignoring the seizures and getting on with their own lives whilst parents are otherwise occupied, and where else would an epic lego zombie castle/ princess palace have its own hospital wing?

For a few days, the Little Princess disappeared off to the far corners of the field with friends who didn't need the lengthy explanations. Just as she never questioned why one of her friends only has one leg, so she never questioned why another still had a nose tube - just showed off her own belly piercings (thus worrying the child who is waiting for a gastrostomy and now needs reassuring that she will only have one tummy hole not three!).

Coming home was softened by repeat visits from friends, birthday parties, and a whirl of Special Kids social stuff. When your friends, and your friends' siblings, have special needs, you don't have to keep up the front. You can be yourself, and they don't mind if you completely miss the point - chances are they'll be completely oblivious to your own point too, but you'll still enjoy playing together, because it's nice just to be together.

And then we went back to church, and her friend who runs across playgrounds to be with her wouldn't sit next to her on the carpet. and instead she was surrounded by small children fascinated with the flashing lights and beeping buttons on her powerchair. and I realised it's not just what special kids friends do do - accept, accommodate, adapt and just appreciate each other - it's what they don't do - get fazed by meltdowns or seizures of anything suddenly odd. Press buttons or attempt to drive each other's chairs (unless they happen to be trying them out). Ask the "whys" loudly, and to a third party rather than directly. And stare (unless it's a parent trying to work out what make of wheelchair it might be, or what exactly is different about that particular headrest, etc.). 

And then I walked her into school for the first day of term, and for the first time ever, she wasn't mobbed by her classmates, but ignored as she shuffled into line. And I'm told she had a good day, but she also tells me she's very poorly and shouldn't go back. but then that friend who wouldn't sit with her at church ran right across the playground screeeching loudly so they could both dance together at the end of the school day, and maybe it is alright after all? And then it's bedtime again, and  "I wish I could jump."

Cool chairs are fantastic when you're with a field full of other people with differently cool chairs. And little zippy eBay bargain chairs are fantastic for nipping in out out of church and racing around the forecourt. But then the game turns into "everybody get up high where tLP can't reach you." Or "you can't pass here until you know the magic password." And school stuff starts to include competitive games, and Brownies means sitting on the floor, and although you get lifted out onto the floor and not excluded, still, you're the only one who needs lifting. and when your mother has made a mistake, and your Brownie trousers are 4 sizes too big, then crawling on the floor really isn't a great idea.

And then when you're at home, and school, and everywhere, you're being told you need to be more independent. You need to be doing your own catheters, filling your own intestines with warm water until they are so full you feel like they're going to burst, at which point they finally condescend to release their hold on everything inside them, shuffling your own assortment of night tubes so you can roll yourself over at night.But you know other children your age don't have to do any of that, and you know your big sister doesn't have to do anything at all for herself. And she can't, because she's disabled. So why do you have to, because you're disabled too, aren't you?

The world can be a very confusing place. There's the big wide world, where everything is harder for you than for anyone else. And where your mother embarrasses you because every time someone says "oh I wish I had a wheelchair like that" she replies "She wishes she had your legs, want to swap?" And sometimes she embarrasses you by singing and dancing in the street, because she thinks it's funny to watch you get all embarrassed and zoom away.

And then there's the nice safe Special Kids world, which is also the ROSY world, and the Helen House world, where there are lots and lots of Mogs, and a few tLPs, and where things are safe and easy full of understanding. And where your mother embarrasses you by singing or holding your hand and swinging it, because some things are universal, and seven year olds should be embarrassed by their mothers.

It's been a Special Kids summer. And that's been fantastic. But now we have to walk (or roll) back into the real world, and that's difficult. She's gained another label over the holidays; doesn't change who she is at all but is another indication of how things may get harder for her as she gets older, how the gap between her and her classmates is likely to widen. And just for today, although this isn't why I started writing this, I'd like to join her in saying it isn't fair.

It isn't fair that she can't walk and jump and run and do all the other things her classmates take for granted. It isn't fair that we don't go to the park very often because I struggle to lift her onto the swings and slides, and because even when I do, she still can't manage the obstacle courses. It isn't fair that she can't use trampolines and bouncy castles or go horse riding or do lots of other things most children even with her level of physical disability can manage and enjoy. And it's definitely not fair that on top of that she struggles with learning and retaining information, and that even if she gets invited to friend's houses (once in 3 years of school), she still can't e.g. play with balloons at birthday parties. And she can't travel with her friends on school trips because the bus isn't accessible. And it's not fair having to sit in hospital waiting rooms when your friends are sitting in the classroom or zipping around the playground. And it's not fair that so many things hurt so much of the time. And today she's at school, and she isn't here, so I don't have to be all jolly and upbeat and point her to all the things she can do, nor do I have to work out where the line is drawn between empathising and being overly sympathetic and poor poor you to her, nor yet do I have to find new ways of embarrassing her to distract her out of it. I can just sit quietly and stamp my own foot and say very loudly It's NOT FAIR.

My heart hurts. She's beautiful. She's amazing. She drives her chairs plural with phenomenal competence and can squeeze them through gaps I wouldn't dare to try. Unless we're at home, as my walls and doors will testify. She can do so much more than the doctors ever thought she'd manage. She's kind and caring and determined, gentle and strong and funny. She can make cakes and  scramble eggs and feed herself and her sister, as long as someone can pop the syringe apart and click it back together again for her. And she puts on an amazing front, and it fools a lot of the people a lot of the time. But more and more she's spotting the differences, weighing them up, and deciding that she comes out on bottom. And I want to go back and live in Special Kids world, where she doesn't have to put that front on; where it's ok to ache, and where friends are just as achey. Where powerchair top speed really is top speed, and where it's totally acceptable to give your friend in the manual chair a push, and where you can play tig as equals, or turn the field into a stage and put on a play, never mind the fact that the prince doesn't want to kiss anyone, and that tLP has no idea what her part might be but is taking huge pleasure in bellowing "OK backstage everyone, now please" at intervals, and where friends just incorporate that into the drama.

But, we're not, and life goes on. And so we get to live in this world, where children tell their parents ""that girl is dying" when they look at Miss Mog; where tLP's new toilet at school turns out still to be the men's loo, as unavoidable delays (genuinely unavoidable; not the fault of the school nor the LEA) mean work won't now start until October half term. Where administrative errors (somehow Mog's address has been changed on the hospital system) which should be simple to fix ("this is her address, not that") are apparently unfixable unless Mog herself writes a letter to the hospital requesting it.

It's not all bad. I can, of course, find many many good things about most of the things which are happening. But, just for now, the house is empty, I'm taking a break from the 3987345987234 administrative things which have piled up over the summer, and I want to sit and wallow in all the "It's not fairs" I don't allow my daughter to wallow in. Which is in itself, Not Fair. But as she doesn't know about it, hopefully it's still OK.

Oh - and back to the original question - Claire, I wish you could be a round all the seven year olds we encounter because that's a pretty perfect response I think. Anyone got anything else they'd like me to ignore more or less completely whilst rambling on about something else comment on?

Tia

No photos here; I took very few this summer, and others took lovely ones and said they'd email them (you all know who you are; please please, pretty please? And with a yay or nay for inclusion here).