Toby is non-verbal. He doesn’t speak. At all. He makes noises – excited noises, upset noises, hurt noises – but he has never said a word in his life. There were times when we thought he was starting to say ‘duck’ or ‘cat’, but it was wishful thinking. His ‘ah’ noise wasn’t the start of a word – it was just an ‘ah’.
I sometimes wonder what it must be like for him, not to be able to talk. We are often asked if he gets frustrated because he can’t make his needs known, but he doesn’t get frustrated because he makes his needs known very clearly. If he wants a peanut butter sandwich, he gets out the peanut butter and the bread and puts them on the table. If he wants a bowl of custard, he gets the tin of custard and a tin opener and a bowl, and puts them on the table. If no-one comes to spread the peanut butter on the bread, or open the tin of custard, he comes and gets us, pushes us off the sofa and drags us across the room to the table. He can be determined when he wants to be.
So being non-verbal doesn’t mean that his needs aren’t met; they are. But I think that Toby’s inability to talk means he misses out on a lot of what makes life interesting. When friends and family come over and fill us in about what’s been going on in their lives, Toby hovers on the outskirts. If other children come over they immediately start chatting too, about toys or missing teeth or what they have been up to, and again, Toby hovers. He wants to join in, and does what he can to be part of things. If the children go upstairs, he will go and sit with them. If they go on the trampoline, he will join them and bounce. But his lack of speech always keeps him at a distance, and there is a whole fun part of life that Toby isn’t able to experience.
We, taking our lead from Toby’s school, are doing our best to help Toby develop other means of communication. At his school the teachers use makaton to support speech, have sessions of ‘intensive interaction’ and Toby has a PODD book, which is a book full of pictures to give Toby the tools to chat. In the book there are pictures for almost all the things he might want to say, with pictures for feelings, all sorts of activities, and even ‘just joking’, which will allow Toby to have a bit of banter with his friends.
But learning to sign, and learning to use the PODD book, is slow work. Over the summer, Toby signed his name for the first time. And Toby can now use the PODD book to request certain foods or activities. It is likely to be a long time before we get to the bantering stage, but hopefully we will get there eventually.
In the meantime, on a day to day basis, Toby gets his enjoyment from other activities – being outdoors, running, scooting, looking at books, watching his favourite TV shows, having cuddles with the people he loves and eating his favourite food and drinks. We know that he is missing out on a part of life by not being able to talk. But a non-verbal life can also be an enjoyable one. And there is something calming about a world without speech engage in conversation. Going for a quiet ramble together in the woodlands, followed by a drink and a snack in a cafe, has become one of our all-time favourite things to do.