Accepting My Child Will Never Walk

I remember reading, a few years back, about someone with cancer feeling inadequate because they weren't running marathons or raising millions of pounds for charity. They were 'just', you know, getting on, turning up for chemo, hoping for the best. I've read too about people who've become depressed (understandably) as the cancer has taken hold; felt like giving up. But those aren't the stories that make the papers; people don't want to read about that. They want INSPIRATION. Defying the odds... That kind of thing. Not just ... Well you know ... The everyday kind of suffering.  
I wondered how it would feel to have cancer and read about the people running 26 miles when you're barely fit to get to the end of your bed. Do you think 'fair play', or do you feel guilty, or unworthy, or maybe that you're just not trying hard enough?
Mind over matter and all that!
Hugh's undiagnosed condition has left his muscles very floppy. He can't walk or si…

Communication: A Special Saturday Post

Makaton sign for mother. Image source
Prior to having Hugh I taught children with autism for many years, some severely autistic, non-verbal children amongst them.  I have been asked countless times “Will he ever speak?” and whilst no-one can know for sure, with each passing year the chances decrease, though I have known a child who spoke his first words at the age of 11.  I learnt that there is so much more to communication than words, it is a highly complex process.  One child I taught had a vast vocabulary, yet had no idea what the words meant.  He was echolalic, simply repeating phrases he had learnt.  Whilst many times he used words appropriately – “Good morning” for example, it was impossible to have a conversation with him.  He simply didn’t understand.  He was no more able to communicate than a non-verbal child despite appearing to be at an advantage.  Words to him were sounds and held no communicative intent. 

There are so many stages that a typically developing child goes through before they use words effectively to communicate.  First they must realise they need to communicate, that people don’t automatically know their thoughts - I taught many very able, verbal children with autism who still struggled with this concept.  Young babies communicate initially through crying to express hunger, tiredness and discomfort and mothers can often differentiate between the different types of cry and work out what their child needs.  This communication quickly progresses, and even whilst still very young, babies begin to learn the subtleties of turn taking in conversation and will babble in response to a parent, beginning even to use some intonation in their sounds.  Eye contact is also a key feature in communication, verbal or otherwise. 

There are many forms of non-verbal communication; eye gazing, that is looking towards a desired item, pointing, taking a parent to an item or placing it in their hands – with for example something that needs to be opened – are all effective ways of communicating desires without speech.  Then there are the more obvious, recognised methods of non verbal communication, such as PECS, Sign language and Makaton. 

There are so many methods of communicating, that I often thought parents placed too much emphasis on verbal communication and speech.  Yet now as a parent I know how desperately you want to hear your child say “Mum”.

As a parent I have heard myself ask “Will he ever speak?” and been devastated by the response.

I cling to the hope that Hugh will one day learn, but in the meantime we support his communication in other ways.  His vision is poor so Makaton or other basic sign language isn’t really appropriate.  Even if it were, he has very little controlled movements so would be unable to use the signs himself.  His elder brother, Sean (now nearly 3) used baby signing when he was younger.  I’d like to clarify, I’m not a ‘hippy Mum’ or anything, but he was having such terrible tantrums – I mean, banging his head on the floor in frustration kind of tantrums – because I couldn’t understand what he wanted that it seemed only fair to give him some tool of communication before his speech developed.  It worked amazingly well and I was interested to see that even when he began speaking at around 13 months, that he would revert to signs when tired or anxious, once repeatedly using the sign for ‘finished’ when he was scared on a boat trip, despite being well able to talk at this stage.  It is sad then, at nearly two years old, his younger brother is nowhere near achieving the level of communication that Sean had at 9 months.  Instead, we use something called ‘on-body signing’.  It’s a signing system for children with visual impairment and moderate to severe developmental delay.  They can feel the sign as they are said, so are not relying heavily on vision as with other signing methods.  It’s quite simple – the sign for hello is shaking his hand, goodnight is tracing your fingers down his face – as if encouraging him to shut his eyes.  We also use objects of reference – everyday items that he can hold, and hopefully see, that indicate what will happen next: a nappy when I’m changing his bum, a wet flannel at bath time, keys when we are going out.  I also try and use song to indicate time of day as he loves music.  We have a ‘Good Morning’ song Sean and I sing each day when it is time to get up and I use the same lullaby each night at bed time.  I am not sure how much of these cues Hugh is aware of or picking up on but hopefully with time he will begin to recognise the pattern.

And how does Hugh communicate with us?  Well, bless him, he has THE most wonderful smile which indicates he is happy, and a right cheeky chuckle that makes us all laugh too.  When in pain or discomfort he cries and when hungry he has this funny little tongue roll thing but I think that might be involuntary.  It is a shame that he is currently being NG tube fed as his most effective and intentional communication so far has always been when eating.  He very definitely will turn his head away and push his tongue out if he doesn’t want something – as if to say “There is no way you are putting THAT in my mouth Mum!”  He also makes a funny shouty noise if I’m not feeding him fast enough as if to say “Come on Mum, I’m starving!”  It’s hilarious because it’s a really cross sounding shout too.  It’s a shame that nothing else so far has elicited the same level of intentional communication but hopefully after the winter, if his health starts to pick up and we manage longer than a week between chest infections then we might be able to start feeding orally again.  At least I know though that he has the capacity for intentionally communication though and that is a start.

And maybe, just maybe, one day he’ll be able to look me in the eye and say “I love you Mum” but until then, we’ll keep working on the other methods.

Comments

  1. Lovely heartfelt blog Emma, Finns first communication was food... His milk actually. When it was just right his fingers and toes used to curl up! I and never heard of on body signing before and it sounds fascinating and shall be off to the god that is google to find out more. Hope everyone at team murphy are ok x

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  2. I can totally relate to this, though my dd does not have sight issues: the body signing does sounds really interesting x

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  3. Thanks for the comments you two (sorry for the delaying responding). Yes, on body signing was a new one on me too. Trying to remember to use it is hard but I hope it will become second nature.

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