The life I never expected

Way back... Way back when... Way back when I didn't know how disabled Hugh was or would be... Way back when I didn't realise how destructive his seizures were... Way back when I thought the doctors could fix things... I thought,  I thought that once we'd sorted the epilepsy everything would be better, I thought that once we'd sorted the epilepsy I'd have to struggle to come to terms with having a child that needed to go to special school.
I didn't expect to have to come to terms with having a child that would be unlikely to live past his teenage years.
I didn't expect to come to terms with having a son that hardly knew I existed.
I didn't expect that, even once the terrible times had past, the devastating consequences would remain.
Hugh's epilepsy has robbed him of a future. Hugh's epilepsy has robbed us of the child he might have been.
His really bad seizures are less often than they used to be, And for that I am grateful, But they cast a long shadow, And I ne…

I'm a real boy!*

Well, it’s all go for Little H at the moment.  There are lots of exciting changes and developments afoot.  The statementing process has begun, so we’ve begun looking round local Special Schools that cater for children with complex needs.  The Complex Care team have assigned us four hours a week which will start during half term.  That’s four whole hours a week when someone else will be responsible for H and I can ... who knows?  Have a bath?  Take Cheeky to the park?  Go to the hairdresser?  Ok, so it will take some time to get to that stage and I’ll probably just go into the kitchen and wash up, but it’s a start.  I’ve made loads of enquiries about local places to take H – there’s a Special Needs playgroup, a sensory support service where they offer massage and reflexology (for H, not me) and a donkey sanctuary that cater for children with additional needs.  It is all very exciting.  I’m not sure how I’ll be able to fit it all in.  But the two, major developments, both starting this week are Conductive Education and the Ketogenic diet.  I’ll post separately about the diet.  This post is all about the very wonderful National Institute of Conductive Education. 

The aim is to work intensively with the parent and child to teach the child basic skills and encourage independence.  I thought it would be a bit like physiotherapy but it seems to be more about incorporating it into daily life than working on a specific skill repeatedly.  For example, instead of just picking Little H up from his mat, with support he is encouraged to roll up onto his arm and push up into a sitting position before I lift him.  H, it seems, will have a more active part in his physical development, rather than me just stretching his arms for him.  That is not to say that physio doesn’t have a place – it does and I will continue with the arm stretches and encouraging him to tuck his chin in – but Conductive Education seems to be a bit more proactive and with an obvious goal in mind. 

H absolutely loved it.  There was lots of singing – there are different songs for every activity – and toys to look at and motivate him.  The Conductor spoke to him, explained what she was doing, what he should be doing and paused to give him the opportunity to respond.  OK, there weren’t any miracles, she didn’t say “stretch your hands above your head” and he did it, but I liked the fact that she gave him the opportunity to, that she spoke to him as if she expected that he could and would do these things.  In many ways, I felt a bit bad, for not giving him the opportunity and for doing things ‘for’ him rather than ‘with’ him; for not always telling him/asking him but just going ahead and doing it ‘to’ him.  It made me rethink the way I interact with him sometimes.  He’s nearly two now, who’s to say how much he does or doesn’t understand.

There were lots of different props as well to support Little H – wooden blocks, benches, chairs and funny ladder things.  He spent time on his tummy, on his back, rolling and sitting.  But the thing that astounded me most and had me very close to tears was to see him standing.  He’s never stood before really; his knees give way or he lifts his feet from the floor.  But with his trusty Piedros, the Conductor supporting his legs and body, his arms locked straight with splints (so his elbows wouldn’t bend) and his little fists clenching the ladder tightly, he stood upright.  And he laughed!  I think he genuinely liked being in that position. Maybe I read too much into it, but I’d swear he was proud of himself.  I was certainly proud of him.  He looked so different; so grown up and like a big boy!  I could’ve cried.  And then she had him walking; tiny, supported, shuffling step, after tiny, supported shuffling, step.  It was wonderful.  I have high hopes for the future.  I think maybe, just maybe, he could show them all!

I've got no strings,
To hold me down,
To make me fret, or make me frown,
I had strings,
But now I'm free,
There are no strings on me.

(*From Pinocchio)

  

Comments

  1. There is so much I could say about this - just reading it made my hair stand on end: it's just so amazing. I saw similar results with my daughter from another intensive programme. And isn't it lovely when therapists focus on what your child CAN do :)

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  2. I loved reading your account of your family's first experiences of Conductive Education.

    It is a recording of a very important first step along a long path through a special life.

    I look forward very much to reading more about your familiy's journey.

    Susie Mallett
    Conductor
    Germany
    www.susie-mallett.org

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  3. Wow, this is so exciting. I look forward to following little H's progress. :)

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  4. It all sounds so exciting! H is very lucky you know to have a mum like you who is so determined to get the best help for him. You really should give yourself credit for pulling together all this stuff for him.
    I will be following little H's progress closely.
    Sending love and Samuel hugs.
    Zx

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  5. Wow fantastic H is so proud to have you as his mum. You help, encourage him, now he is showing you what your support ha achieved .

    I think this is just the start of things to come really happy for you

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  6. Blue Sky - I love hearing about the progress your daughter made, it gives me hope for the future. x

    Susie - Lovely to hear from you, thanks for stopping by. I will keep you all updated on his progress with Conductive Education. I'll take a look at your website now too.

    Thanks Di, I'm pretty excited too.

    Thanks Zoe for your kind comments and the big hugs from Samuel. I know from your descriptions that they are the very best kind of hugs. xx

    Hi Wendy - thanks for your kind comments. I hope too that this is just the start of things to come. xx

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