Thursday, 23 May 2013

ARPKD, Autism and Us.

Sometimes when writing, I just start typing to see where I end up. Today, I have a purpose. I want to talk about my children. I am mum to fraternal twins, Charlie and Harry. I have to call myself 'mum' because 'mummy' is so uncool when you're eleven.

Life is hugely frustrating at present, but it's mostly because I don't know what's in store for my children. I see a wonderful future, full of wondrous things, but how do I get them there?

Charlie, who is the oldest of the two, has ARPKD - Autosomal Recessive Polycystic Kidney Disease. That in itself is a huge challenge in his life, and he also has autism (autistic spectrum disorder). There are honestly days when you wouldn't know anything was remotely wrong with this beautiful child. And then there are days like today. In fact, there's been quite a few days like it recently. Most days I don't even notice that Charlie is different because, to me, he is just my Charlie. For a child with autism, he has the most wicked sense of humour. He just doesn't get all the jokes, and tends to take things literally when you tell him something in jest, but his own sense of humour is immense. He's a clown, he's hilarious, and he's also incredibly artistic and bright. There is this vivid imagination that can't be spoken in words by him, but let him put it onto paper, and you're seeing a new child. A different child. But recently he's tired. More tired than usual, and more tired than an eleven year old should be. He's experiencing chest pains; leg pain; breathlessness; back pain, itching and he's slurring his speech at times, the list goes on. The strange thing is, this is our normal in many ways. The tiredness is more concerning to me, because I'm used to everything else, but he hasn't experienced this kind tiredness since he was about seven years old. Tomorrow is hospital day. I've been asked to take him to a ward and they will check him over. Why is it that both his nephrologist and pediatrician are on holiday at the same time. Arrrgh!

I have these two beautiful and amazing children, but I am constantly fearful for their future. I am noticing more and more how unaccepting people are of those who are different. The fact is, both my kids are different. Medically, Harry doesn't have anything of concern, but that boy has been through the mill over the years. I hear tale when they come home from school of 'Such and such did this to Charlie today,' or 'Such and such was horrible to Harry.' Why oh why aren't we teaching our kids about acceptance and tolerance. Am I teaching my children to be too tolerant?

I am my own worst critic at times and yet while I worry constantly about whether I'm sending the right messages, saying the right thing, and even doing the right thing; I can't help but realise that I have two outstanding kids. They mess up almost daily, but I mess up more. They argue most days, but their arguments are generally well constructed and actually thought out. They are discussions more than arguments. But when you see these boys together, you know they come from love. At eleven years old; they still reach out to hold hands when crossing the road; sit huddled in bed together reading from one book that's either factual or hilarious;  sit close and watch their game videos on YouTube; they laugh all the time - and I mean all the time; they love our dog, they love each other, and they love me. Charlie hardly ever says it, but he will write it or draw me pictures to tell me. Harry is such an incredible young man, and I see such a bright future for him if he works at it. He's strong, he's compassionate, and he's been mine and Charlie's carer for far too long. He's often suffered as a result, but overall, he's an absolute gem. He's the brightest person I know. You know when people say, 'he's been here before.' Harry's been here since the stone age, I swear.

There's so much to say about the little people in my life, there truly is, but it's overwhelming all in one go, so I'll try to space it out. I think by writing about my boys and how much they mean to me, I'm confirming that even though today started out as a bad day for us (I won't go into detail about Charlie showering himself and washing his hair without the water even touching him, or using the sofa as a trampoline and sending my laptop to the floor two days running. Nor will I moan about the never ending supply of Babybel cases I find laying around because the bin is just too far away), it doesn't end on a bad note. Not ever. Because I will collect them from school, I will ask how their day was, what they had for lunch, we'll eat dinner together, and then we will spend the rest of the evening laughing amongst ourselves about the crazy things they say. For example: 'I'm oftenly more tired since I got the stone in my eye.' Charlie, age 11.

I'm still trying to work out how I help them reach their potential. I do all this as a single parent, and I, for the most part, choose to keep it that way. I manage my home, bills, hospital trips, school and my kids on my own, and I feel somewhat proud in my achievements, but I occasionally feel like I'm letting them down because I can't afford to let them join certain clubs, or buy them the same as all their friends have. They don't often complain, but I wish I could light up their eyes more often.

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