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…

Communicating without words



I had the absolute pleasure of attending one of Jo Grace’s training sessions ‘Sensory Lexiconary’ this week.  I’ve been a fan/stalker of Jo’s for some time.  She creates wonderful sensory stories, is a wealth of knowledge on profound and multiple learning difficulties (PMLD) and she freely shares creative and clever tips that can be used by parents and professionals alike. 
 
To say I was inspired by the training is an understatement.  There were times I was genuinely moved to tears.  I left that day full of hope and full of ideas as well as reassured that I am already doing quite a good job raising Hugh. It was lovely to see his little face smiling at me from one of the very first slides on the presentation, as Jo recounted the story of how we had persevered with various activities to stimulate his vision, such that he progressed from a new-born unable to differentiate light and dark to a young boy with enough functional vision to benefit from wearing glasses.  (You can read the full story here).

I have scribbled pages and pages of notes from the training but I’d like to share some of the key points that I found so inspiring.  This is only a very, very small part of what was covered, but as I put into practise other key suggestions of Jo’s I will share them with you. (crediting Jo of course).



Sensory Beings vs Linguistic Beings

The term profound and multiple learning difficulties focuses on what is ‘wrong’ with the individual. It’s why, when Hugh was younger, I kept interrogating the paediatrician, terrified he would be labelled as ‘PMLD’. Profoundly disabled really does sound quite scary and it can be hard to equate that label to my happy boy who loves the feel of the wind in his hair, who laughs at silly noises and finds endless delight in balloons. Jo uses the term ‘Sensory Beings’ instead. It describes a person who experiences and interacts with the world in a sensory way.  They live in the moment. It can also be appropriately used to describe young babies and those with late stage dementia.  She explains that the rest of us are ‘lingusitic beings’, that we use words to interact with the world.  Unlike the term PMLD, there is no judgement about which is better. Whether sensory or linguistic they are both equal but different ways of experiencing the world.   

For example…

If I go for a walk with Sean, my 8 year old, neuro-typical/linguistic child, the walk would have a purpose – to get somewhere.  We would chat easily, taking turns in the conversation.  Invariably it would be about fidget spinners at the moment (never thought I’d miss the days he talked endlessly about Minecraft). We might spot things along the way and acknowledge them – he usually points out sports cars or adverts on buses for films he wants to see.


A walk with Hugh is different (not least because he won’t be doing any of the walking).  The walk is the purpose.  Although I talk and point out things around us, he can’t verbally respond.  Aware that Hugh processes things more slowly, we pause often. I notice things, sounds and smells that I’m rarely aware of when I’m rushing about day to day.  We can spend ages sitting in companionable silence at the side of the pond, listening to the water lapping at the edges, the leaves rustling as the breeze passes gently through them, the different sounds and pitches of bird song, children playing in the park.  Together we feel the sun on our faces and the wind in our hair, the smell of grass that has been cut and is drying in the sun (a smell very different to freshly cut grass), the earthy smell of the mud around the bottom of the trees. 

Mindfulness: paying more attention to the present moment – to your own thoughts and feelings, and to the world around you

"An important part of mindfulness is reconnecting with our bodies and the sensations they experience. This means waking up to the sights, sounds, smells and tastes of the present moment. That might be something as simple as the feel of a banister as we walk upstairs.
Mark Williams, former director of the Oxford Mindfulness 

It’s interesting to see that whilst many of us linguistic being are downloading apps like headspace or attending courses to improve our mindfulness, and in turn our mental wellbeing, sensory beings like Hugh are inherently mindful.  Hugh, in turn, is teaching me to be mindful. (Which is a good job really, as I haven’t managed to get past day 4 of the app yet).


Having a conversation with a sensory being

How though, do you have a conversation with a sensory being?  The truth is, I do find it hard that Hugh will never call me Mum, he’ll never say he loves me.  Sometimes the silence between us is deafening.

Jo spoke about the colloquially termed ‘mother-ease’ language and how this early sing-song speech used with babies is easier to process.  (You don’t have to say baby things or made up words).  She explained too about the importance of leaving enough time for them to process what has been said.  These are both certainly true for Hugh.  I remember taking him to lunch with some friends of mine and one, an educational psychologist, pointing out how we all naturally addressed him in a more ‘sing-songy’ voice and how he’d recognise this part of the covnverstaion was addressed to him and smile.  Yet he’d tune out as we discussed our own day-to-day lives. (Which is probably just as well!)  I was reassured that it wasn’t patronising to speak to Hugh in this way at 7 years old, but was actually helping him to process language.

But Hugh doesn’t answer, so how is this a conversation?

Well here’s where Jo explained we have to be aware of our linguistic bias – our belief in the importance of words.  A conversation is simply the exchange of meaning and for Hugh, this is done entirely without words. 

Whilst the walks I described above differed immensely, in each I was able to connect with my children. With one, I could have endless meaningful (ahem) conversations about fidget spinners, with the other we could share the sounds and smells around us.

I contacted Jo after the training to tell her how inspired I was, I wrote:

“There were times in your training that I genuinely had to swallow back tears.  I found it enlightening, inspiring and reassuring.  It gave me hope.  It reminded me that the connection I have with Hugh is meaningful.  That ‘conversations’ don’t have to use words. That he tells me he loves me a million times a day, in his own way.  Living in a society that values the linguistic experience so much and emphasises what is said, it can be hard to remember that”.







If you want to connect with Jo (and stalk her like I did) you can find her on twitter here. Details of future training can be found on her website here.

There’s so much more to share, not least of which is how hope can be found in an empty pringles tube, so I promise to share more, (if Jo will let me).






Mummy Times Two
Spectrum Sunday

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