Guest post: "How I communicate with my non-verbal child - and how you should, too"

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Smiler was ten days old when his dad and I were told his brain was too malformed to create or retain memories. "He won't walk, he won't talk, he won't smile, he won't remember you from one day to the next", they said. Our baby boy was a genetic fluke, a statistical aberration.

In the days that followed we had many appointments and tests, and met many sombre consultants who cleared their throats before meeting our gaze. One of them said something different though, following a particularly difficult hospital appointment: "they don't know what he might do. They're only guessing. Let him see your face and hear your voice - talk to him all day long."

So we took him home and we talked to him. Before, during and after physio routines and hydrotherapy, during long bus journeys to visit consultants, we talked to him. We read aloud from whatever books we were reading, we sung along to the radio and we narrated our most mundane activities. We surrounded him with words.

Over the next two years Smiler gained a brother and a sister, and though his development was certainly slow, it was also undeniably progressing. He watched our faces, and as he gained control of his body he began to make noises back to us - nothing approximating words, but still purposeful sounds.

Our focus was always communication, rather than speech. We couldn't bear the idea of him feeling alone. Smiler is a wheelchair user, he takes different medicines several times a day and he has regular planned and emergency stays in hospital – any level of communication would let us share a little bit of his world.

The speech and language therapy provision was pitifully inadequate. Smiler had a statement and attended specialist education provision, and yet his class of 21 children - all with severe or profound learning difficulties - were allocated just four hours of therapy a fortnight. Understandably, priority was given to children with eating and drinking issues rather than communication issues. We were left to get on with it, seeking ideas, inspiration and support on internet forums and through chance advice from other parents.

I'll never forget the first time Smiler spoke - when he used his voice to say a word instead of make a sound. He and I were in Mothercare, and as we drew close to a stand of toys from a CBeebies programme he looked at it and said "Boo". I bought the toy, tears in my eyes as I handed the money over. The massive reaction he got for repeating his word over and over was clearly an incentive and within a year he had another thirty words or fragments of words, or Makaton signs, that we understood. As he has learnt more words we've realised that he understands a great deal of what is said to him and around him, and he's very sensitive to non-verbal cues like body language and facial expressions.

Despite all this progress, Smiler was officially classed as non-verbal last year. I was shocked. It felt like a kick in the teeth, undermining all the effort we'd put and denying his achievements. I thought perhaps the label might up his priority for speech therapy, but in fact, it has continued to be something of a mythical holy grail.

The lack of professional help makes it all the more important that we, and everyone else around him, keeps chatting. We encourage him to communicate with everybody, saying "thank you" to the driver as we get off the bus for example, or when a waitress brings his food.

Sometimes people worry about what to say back, but even if he doesn't understand their words, the fact that they reply to him means a lot. I love it when doctors come into the room and introduce themselves to Smiler before turning to me. It helps him recognise that he matters, which is something each and every one of us needs to feel about ourselves. In my experience, making eye contact is a great place to start - that simple acknowledgement of existence, accompanied by a genuine smile, is the first step in many of the ordinary conversations we share every day.

I've forced myself to ignore the labels, in the day-to-day life of my son they are irrelevant. He may be 'non-verbal', but he does communicate, which is all that matters to us. With determination and perseverance we've shared hundreds of conversations, and because he knows he can communicate with us - and that we will try our hardest to understand - he remains motivated, and keeps on talking.

[stephc007]

Communication is so key, and something I'll never take for granted. I remember how distraught I was when I thought our girl would never call me mum or tell me she loved me. But she did eventually, and I realise how lucky I am. So true that nobody knows how each child will develop. I'm sure you are treasuring every forward step x

[hazeyjane]

Hello Arabica! I will message you.