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more than words by jenni williams

More Than Words

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Lessons In Non Verbal Communication

Speechless

 

We received our daughter’s diagnosis when she was three weeks old, on the day she was discharged from the Special Care Baby Unit following her premature arrival. Eve had had blood taken two weeks previously due to a number of markers that something ‘wasn’t quite right’. We were expecting the results that afternoon and when the consultant paediatrician asked if he could have a word with us in a private room, I knew immediately from the look on his face that our world was about to be shattered.

 

eve and scout the dog laying on rug

 

He told us the name of Eve’s condition which we’d never heard of – it’s incredibly rare – and then handed over two sheets of paper that he’d printed off the internet. He explained this was all he’d been able to find out in a short space of time. In the midst of the overwhelming shock and grief I remember feeling incredibly angry that the sum total of his medical knowledge was a Google search and the sum total of his bedside manner was a print out from a genetics website. I was no doubt being unfair but we never saw him again so I never had the opportunity to revise my opinion. That consultant presented me with a vital lesson – the ability to use words, spoken and written, is not the same as good communication skills.

The description of Eve’s condition included numerous medical terms that we didn’t understand. However it was clear that Eve would have what the medical profession calls ‘severe learning disabilities’ and was highly unlikely to ever talk.

In those early days I found it very hard to accept that my daughter would never be able to speak to me. I’d never have a conversation with her or chat to her about her day. And how would I ever know if she was happy if she couldn’t tell me? Yet by far the worst implication was that I’d never hear my little girl say, “I love you Mummy!” I found this prospect utterly heart wrenching.

Mum’s the word

 

Months passed and although Eve started cooing and babbling at about the right time, her speech didn’t develop beyond that. Admittedly in the first year of your child’s life you don’t expect them to talk but a bittersweet incident at Eve’s first birthday party highlighted what I didn’t have to look forward to.

 

jenni and eve reading

 

One of our friends arrived with his daughter who was 15 months older than Eve and explained his wife had been unexpectedly delayed. Half an hour into a very happy party I heard the doorbell and went to answer it; it was the mum of aforementioned little girl. As I was greeting my friend I heard an excited little voice behind me.

“MUMMY!”

My friend’s face lit up and she instinctively bent down and spread her arms out for the hug she knew was coming. Little Girl ran past me and joyously flung herself full pelt at her mummy.

It was lovely and awful all at the same time. Lovely for obvious reasons, awful because I was fairly certain I would never hear Eve squeal

“Mummy!”

like that. But I hid my sorrow – how can you begrudge anyone that welcome?

Listen with Mother

 

Another year passed. Eve had become an extremely happy and contented little person who knew who Mummy and Daddy were and smiled a lot.  We’d decided to credit Eve with the ability to understand what we were saying and we therefore always spoke to her entirely normally.

We felt sure this approach was paying off; Eve clearly understood frequently uttered phrases such as

“It’s ok, I’m doing your dinner,”

when she was hungry or

“Kick your legs!”

when we went swimming.  She even understood,

“This is non-negotiable,”

something I had to say to her every morning and every evening when she tried to refuse her epilepsy drugs. There was however, no progress on the speech front.

Verbal diarrhoea

 

One afternoon shortly after Eve turned two, I took her to her speech and language therapy appointment. I had never been especially impressed with the therapist and remained skeptical about how exercises such as ‘posting’ picture cards through a pretend letterbox or brushing a doll’s hair would help Eve’s speech development. Eve was totally disinterested in these sessions, such that it tended to be me doing the various tasks whilst trying in vain to engage Eve’s enthusiasm. Nevertheless, I persisted; if there was the slightest chance that these sessions were helping then they were obviously worth attending.

 

However towards the end of this appointment the therapist pounced. She coldly informed me that the reason Eve couldn’t talk was because I gave her free access to her toys so she’d never learnt to ask for them, didn’t teach her nursery rhymes (I sang other songs instead including silly ones I’d made up), and read books to her in the ‘wrong way’.

I was too stunned to robustly defend myself. I managed to say that I’d had free access to my toys when I was little and yet I’d learnt to talk, and I didn’t believe there was a causal link between toy availability and lack of speech. I reminded her that almost all children with Eve’s condition are non-verbal and it was nothing to do with the whereabouts of toys or the wrong kind of singing and everything to do with the deletion of part of a chromosome, a fairly large part in Eve’s case.

Despite these inconvenient facts, the therapist reiterated her opinion and said something about putting Eve’s toys on shelves out of reach. I don’t recall if I responded to that suggestion in the manner it deserved but I do know I got out of that therapy room as fast as I could.

 

Actions speak louder

 

That evening I was making Eve’s dinner; she was sat in her highchair in the kitchen with Scout, our Golden Retriever, lying at her feet. Suddenly, I found myself sobbing uncontrollably over the saucepan of pasta.

Although I knew the therapist was talking rubbish, she had nevertheless struck a nerve. Deep down I worried that I wasn’t good enough for Eve; that I wasn’t capable of being the mummy she needed. I felt this from the day we received her diagnosis and even though I was genuinely very grateful for them, the number of medical and therapy appointments we had didn’t help.  It seemed as though everyone knew what Eve needed better than I did and now I was being told that it was my fault that she couldn’t talk.

Then Scout barked.

I turned around and saw her and Eve looking at me with obvious concern.  Scout came bounding over and I sank to the floor where she pounced on me and quite literally licked my tears away. Scout was five months old and very much a silly puppy but she knew something was wrong with her human. I hugged her and she pressed up against me, nuzzling her head into my neck. Then Eve started vocalising with an unmistakeably urgent tone and hitting the tray attachment to her chair.

Her meaning was clear.

“What’s wrong Mummy? I’m worried about you!”

I went and put my arms around my tiny girl and gave her a big kiss.  I told her it was better to be non-verbal than to spout such drivel, a snake oil theory that has still notably failed to win the Nobel Prize for Science, and we wouldn’t be going back to that woman.

Like the paediatrician who gave us Eve’s diagnosis, the speech and language therapist had inadvertently done me a favour. She had proved that just because someone can speak in coherent sentences, it doesn’t mean they’ll say anything worth listening to. Conversely my non-verbal dog and non-verbal daughter had just shown me that love and compassion can break through any apparent communication barrier.

The Language of Love

 

That was a watershed moment for me. Four years on, Eve remains non-verbal but tells me she loves me numerous times a day. I get hugs, kisses and rapturous smiles, appreciative pats on the arm when I’m feeding her, and the most heart-melting welcome when I pick her up from school.

Eve’s receptive language is really good and my husband and I think she understands almost everything we say to her. If she’s playing on the floor with those speech hindering, easily accessible toys and I suddenly announce,

“Cuddles for Mummy!”

then her face crinkles into an expectant cheeky grin. She knows full well that this means a mummy bear hug is imminent and inescapable.

Eve communicates with us through vocalising, a bit of signing and facial expressions, often rather withering ones! Believe me, my daughter has no trouble making her feelings known. She loves looking at books, loves being read to and still loves it when I sing to her.

We’ve all come a long way since a list of medical terms seemed to define the parameters of Eve’s life. I know without a shadow of a doubt that my baby girl loves me and more importantly, I know she feels loved in return. And that means more than words.

 

jenni and eve

 

Read more of Jenni’s blogs here:

An Alternative Christmas

Gone To The Dogs

Revelation

What’s Wrong With You

 

Follow Jenni on Twitter

 

Please leave comments below.

 

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6 thoughts on “More Than Words

  1. Great blog post, I despair at how incompetent some in medical and associated fields can be when it comes to communicating with patients, parents and service users. You have a beautiful and sparky little girl and you have much to celebrate and be proud of in all she and you as a family have achieved. xx

    1. The irony is that I’m so grateful to the vast majority of Eve’s consultants and therapists. So many are awesome. But not all. And I’ve learnt there are limits to expert knowledge and the best medical professionals admit that. There’s a lot to be said for amateurish parental instinct!

  2. Beautifully written. Parents are always the experts in their own children. Sometimes medical professionals forget that.

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