You know that wonderful feeling you get watching a sleeping child? That sense of peace, and of promise. That perfect little nose. Those long dark lashes and wayward curly hair. That soft, soft cheek under your lips as you kiss him ever-so-gently. The little sucking motions he makes as he dreams. You wonder what he’s dreaming about.

And then you realise that you, too, are dreaming. Dreaming that when he wakes up, he will be the normal little boy that he looks like at this moment. That he will catch your eye, roll over, hold his arms out for a cuddle. That he will slide out of bed and toddle down the hallway. That he will smear his breakfast all over the kitchen. That he will protest, loudly, about getting washed and dressed. That he will charge into nursery to greet his friends at full pelt without a backward glance. That he will call you “Mummy.”


If I had my time again, I might study psychology. It fascinates me, as one of our last frontiers of discovery. We can extrapolate what happened at the farthest reaches of the universe, a billion light years ago, but we cannot tell what is going on in someone else’s brain. Two people can look at the same scene, but never know what the other is seeing.

In particular, I wonder about Benjamin’s brain. We know its structure, thanks to the MRI scanner, perhaps more intimately than that of most brains. We know the pattern of his brainwaves under an EEG. But we don’t know what he’s seeing, hearing or thinking. Does he dream at all? Does the world seem hazy and distant, or overwhelming in its Technicolor clamour? Perhaps he’s taking in everything around him, but cannot control his muscles enough to respond in any way. Perhaps he’s frustrated, trapped: that is my worst fear.

Actually, he doesn’t seem frustrated at all. Most of the time he appears relaxed, contented even. I hope that means he’s happy with whatever it is that he sees, hears, feels and thinks. But placid and unmoved as he may be, it’s hugely important that he’s given every chance to communicate, to learn ways in which he can influence his surroundings. We must make every effort to understand what he’s trying to tell us, even if he doesn’t know he’s trying. To spot the nuances in his awkward hand gestures that indicate the difference between reaching out and pushing away. To feed back to him that he can influence his surroundings.

Benjamin has a “BeActive Box” also known as a “Little Room,” which is a basically a three-sided, Perspex-roofed fish tank in which he can play. The idea is that it both blocks out disturbance from the outside world and amplifies any movement or noise that occurs inside the box, so Benjamin can get the maximum feedback possible from any movements he makes and any toys he touches. Whether or not it’s working, he certainly seems to enjoy “his box” as we call it … he usually falls asleep in there.

He’s also recently had a few sessions with an iPad: just touching the screen, exploring cause and effect, making a firework explode or a xylophone “ting.” It’s easy to read too much into it, to think he’s interested, he’s trying, he knows that cause does lead to effect. Yet, we have to assume that he is engaging, or we would never do anything but plonk him in his box to sleep… Maybe one day he will even learn to use that iPad to communicate using his gaze. I’m grateful that we live in a time where such things are, at least technologically, possible.

Far more important than technology are the many wonderful therapists and teachers who visit us to help unlock Benjamin’s brain. They’ve bombarded him with sensory toys, and me with a host of new languages: BSL, Signalong, Makaton, Canaan Barrie, TaSSeLs. Given his apparent visual impairment, I’m focusing on the tactile signing systems, at least for communicating to Benjamin. If we can be consistent enough and committed enough, he may start to associate signs with events. For him to communicate with us, to start to teach us what he is feeling under that unruly mop, we must learn to interpret his expressions, body language, and vocalisations. So far we understand smiles, grimaces, a cry for hunger and a cry for pain. An open mouth means “yes” to food or milk. A batting of the right hand means he wants to play. Extension of both arms may indicate discomfort. Eighteen months and I have learned six, maybe seven of his “words.” It’s slow, slow progress and a demoralising success rate. But we have to keep trying if we are to keep our dreams alive.

What's going on in there?

What’s going on in there?

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