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…

Seeing and Believing


Of all the senses, sight must be the most delightful.

Helen Keller


I remember the day they told me Hugh was blind.  I went home and I sat on the stairs and wept.  I called my mum.  And she cried too. 


Of all the challenges he faced, the developmental delay, the seizures, the hypotonia, his feeding difficulties … it just seemed so unfair that he was hit with another blow. 


And blind?  Well, blind seemed so final somehow. 


When Hugh was a new-born I was concerned that he never made eye contact and that he was so disinterested in the world around him.  In a dark room, he wouldn’t turn towards the light, even light up toys, right next to his head in the cot, held no interest for him.  But slowly, painfully slowly, almost so slowly you wouldn’t notice, Hugh started to ‘see’ things. There’d be brief glimpses of recognition or attempts to reach towards things; shiny things and red things usually. We borrowed a dark den – a huge tent that blocks out all the light – and I’d sit in there endlessly with light up bouncing balls and fibre optics trying to teach him to see. 



The thing with Hugh’s kind of blindness is that it’s all to do with the brain and less to do with his eyes.  There’s very little wrong with his eyes really, but his brain just can’t make sense of what they see.  This is called a Cortical Visual Impairment (or CVI for short).  The way it was explained to me was to:

*          Imagine his eyes are a camera.  The camera works fine - it takes a great picture. 

*          There’s nothing wrong with his optic nerve either, although it’s a bit slow – so the driver delivering the film to be processed takes a long and meandering journey to the processing lab, but it gets there fine and in one piece. (Remember sending camera films off to be printed?  I guess it’s an outdated metaphor now). 

*          But the processing lab, Hugh’s brain, is a right mess - there’s things all over the place, it’s all higgledy piggledy (OK the Doctor never explained it quite like that) and it’s all so disorganised that the film gets mixed up.

*          The perfect picture taken by the camera isn’t printed correctly and the resulting photo bares no relationship to the picture that was originally taken. 


So basically although Hugh’s eyes can see, his brain can’t make sense of the image. 

In a funny kind of way, this is good news.  Or less-bad news.  It gave us something to work with, something we could try and improve – hence the hours sweating in the dark den.  Hugh’s brain could try and learn how to see.  Hypothetically anyway. 

Over the years, I’ve seen tremendous improvements in Hugh’s ability to see. He certainly recognises his favourite toys and he will reach and grab for them.  He can spot the shiny string from balloons and has mastered the art of catching it.  He can even track and follow objects with his eyes.  From the baby who couldn’t see a light shining in a pitch black room, these are big steps.  Despite these improvements Hugh continues to be registered blind (or severely sight impaired as the new phrasing goes).  And as yet, he is still not looking at faces or making eye contact and I believe this is something that is very difficult for people with CVI to achieve.  That does of course make me a little sad; I would love him to look at me … I mean really look at me.  Although that said, even without looking at me, he’s pretty quick at reaching up and pulling my glasses off!!!


This week, however, has seen another step in the right direction and Hugh was offered glasses for the very first time.  Previously it was felt that the problems with his brain making sense of the image were so severe that glasses wouldn’t help.  Now though, he has developed enough to allow him to try glasses to see if his eyes being able to see more clearly will help.

Confusing, I know. 

But if we go back to the original analogy – the camera works fine but the lens needs adjusting to get a clearer, less blurry image (hence the glasses).  If the original image is clearer and more focused, then perhaps the brain will find it easier to interpret.  Who knows?  It’s certainly worth a try.

So here he is trying on some glasses today.  He seemed to quite like them (even with that annoying sticker stuck right in the middle). I’m not sure if he’ll keep them on or whether they’ll even help at all, but we shall see how it goes.  His new glasses should arrive next week.  I’ll keep you updated.



Photo Credit


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I'm linking this post up to the linky Small Steps Amazing Achievements over at Autism Mama  #SSAmazingAchievements



“Our


and also the  Mad Midweek Blog hop (which is a new one for me!)


Super Busy Mum

Comments

  1. Oh wow, what a challenge you both face. I used to be the one developing those photos so your analogy works fine for me. Not a condition I've heard of before. I look forward to following your little man's journey x

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    1. Thanks for popping over Mary. Glad that the analogy works for you ... I'm waiting for an opthalmologist to pull me up on it - I'm sure it's largely inaccurate, but it helps me understand it better all the same.

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  2. Good luck keeping them on - but if they make a difference I am sure they will stay.

    My daughter was 2 when she had her first glasses. We were told to introduce them slowly and a few hours at a time - they were strong. My daughter put them on, and kept them on - she fell over the ground as she came out the opticans cause it was "higher"

    She noticed all sorts of things...

    They made such a difference to the world ... she never once did not want to wear them, she took great care of them and if they did break Specsavers were great and replaced FOC ... I hope you have similar luck! It still amazes me how the optican can tell if they are the right ones without having to communicate at all!

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  3. Really hope that they do benefit Hugh as much as your daughter Renoufdesign. I've worn glasses since I was 18 months and my elder son has worn his since he was 4. Like your daughter he saw the benefit immediately and never took them off - it wasn't a battle at all. Glad they've helped your daughter so much.

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  4. Lovely to have you joining up and I hope the glasses stay on and are helpful.
    Children's opticians are wonderful, my daughter has worn glasses from an early age and it was difficult to get through an initial consultation, bearing in mind her autism and delayed speech, but they have made such a difference.
    Look forward to reading more about H and his progress and thanks for linking up #SSAmazingAchievements

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    1. Thanks Jeannette - lad glasses have made such a difference to your daughter, hope they help Hugh too. Yes - Children's opticians are great - I find it amazing that despite Hugh's difficulties they can still work out, to some degree, what he can see and can't see.

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  5. How cool does Hugh look in his glasses! I really hope they help focus his camera. It sounds like you have been on a very long journey with his sight but I can see there is positive progress. I really hope Hugh likes his new glasses and they help him x

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    1. Thanks Jane, you're right, it has been a long road. But it's great to look back and see just how far he's come.

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  6. Will have to come and see the lad in his new specs as i will b working up the road in jan xxx love this blog emma. Xxx

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