Even with my first child I was never one of those mothers who could tell instantly what the baby wanted from the sound of her cry. I would have to run through the whole checklist every time: Hungry? Dirty? Cold? Hot? Tired? Uncomfortable? Sick? Bored? Overstimulated? (Fortunately she was nearly always hungry or we would never have got anywhere).

With him, it’s simple. There is only one cry, only when he’s hungry: a heartbreaking, desolate “mbwah” that cuts right through you, while his tiny face crumples like it is the end of the world. And he doesn’t cry very much – far from it. Nothing compared to the hours endured by colicky babies (and their parents). Sometimes we get an hour or so of screaming when he’s hungry but also so tense he can’t latch on … needless to say he usually takes in so much air that once he does manage to feed he immediately brings the entire breast-full back up again. Cue another midnight laundry session!

So when the paediatrician asked, at our multidisciplinary review, “How does he communicate his needs to you?” we were at a loss. “Er… communicate?” It wasn’t a term we’d really associated with him. Those rare, beautiful smiles seem more a response than a desire to tell us he’s happy. He doesn’t ask to be picked up or played with. We change his nappy by the clock, or when we can smell it. When his muscle tone is high we cuddle him or rub his feet, which seems somehow to relax him. If he clamps his mouth shut when being fed, we stop. If I’m honest, the communication between us is perhaps something like that you would have with a pet cat. Not even a dog.

I think the best, maybe the most human, form of communication is to laugh together. At a special needs group I met a little girl who reminded me of him in one characteristic feature – the shape and size of her head. She’s four-going-on-five, tiny, shy, big eyes behind thick glasses, a mop of brown curls. She doesn’t walk; doesn’t talk: much like the future we’ve had predicted, at least as far as anyone can predict. But she laughs. On this day her dad was swinging her, almost flinging her fragile frame around – like dads the world over do – and she was grinning, giggling, chortling, guffawing, with pleasure and love.

We’re nowhere near that yet – he doesn’t tolerate sudden movements, for a start. But I do like to imagine he’s becoming gradually more alert: fixing on faces, following sounds and movements with his head, looking out for familiar toys even though he can’t yet reach out for them. One day we will play together and one day he too, will laugh.



Choosing a challenge

I like a challenge. Sometimes I need a challenge, or at least a goal. His first week was easy because I had a purpose: to feed him 30 mls of milk every three hours, day and night. So I breastfed and finger-fed and syringe-fed and bottle-fed and formula-fed and wrote it all down on a chart, and in between I pumped my breasts with the oh-so-slow hospital breast pump, and between that I changed nappies and smiled for visitors and showed my chart to the paediatrician and undressed him for weighings and temperature-takings, and if there was any time left I slept, until they agreed that he wouldn’t need a naso-gastric tube and we could take him home.

Within a few hours of getting home the midwife, in a panic, set us the new, ever-constant goal of keeping his temperature up, so I dressed him up in layers and blankets and made hot water bottles and got a digital thermometer and made another chart and organised the loan of a heated mattress from the neonatal ward, and held him close against my skin until they agreed that we could keep him at home.

And then … what? Early intervention, they all said. The first three years of a child’s life are when the brain is most plastic, new neural connections can be made, the foundations for all future learning are laid. Stimulate him, they said: his sight, his hearing, his touch, his taste, his communication, his movement. But it’s all very open-ended. There’s no known goal, no set program, no schedule, just “as much as you can” so that he can develop as much as he can.

On the one hand it’s a constant pressure, another reason to feel guilty. Am I doing enough? Every minute I’m not playing with him, talking to him, moving him, showing him things is another neural connection not made, another skill slipping out of his future grasp, another day closer to that three-year deadline. On the other, it’s easy to let minutes, hours, days slip by without really doing anything instructive. He doesn’t clamour for attention, doesn’t get bored, and he does tire easily. I understand where Saira Shah, author of The Mouseproof Kitchen, is coming from when she says in an interview about her profoundly disabled and possibly life-limited daughter, “what’s the point of giving her therapy which would give her 20 per cent more muscle tone when she’s 50? This is what she loves … being held, being rocked … I don’t see why she can’t have a life where she is just cuddled.”

In many ways we are lucky that we had an early diagnosis of his condition. Many parents of similar children would, at ten months, still be fighting for recognition that there was anything wrong. We have no such excuse not to spend all our waking hours doing muscle exercises, waving flashing lights from side to side, supporting him on his tummy, crinkling space blankets under his fingers and brushing paintbrushes over his toes. Yet, would that help him to maximise his potential, or would it stretch him beyond what he is ever going to be capable of?

Last week we had our regular meeting with the neurology consultant. As usual, he was “delighted” with our boy. As usual, I asked whether he could make any guesses as to his future abilities or needs. As usual, he shook his head, talked about “developmental clocks” and the impossibility of telling at what rate this one might be ticking. Then he made a throwaway comment: “If he’s not sitting by the age of two, it’s very unlikely that he will walk.” And there I found it, my new challenge. I might have frittered away the first ten months of his life with cuddles, but I can spend the rest of these two years teaching him to sit.

Is this a good thing? Am I setting myself (and him) up to fail? Am I going to waste the next 14 months exhausting him with futile exercises in pursuit of something that was never within his grasp, when I could have been holding him tight? I hope not, firstly because I simply don’t have time to pursue this goal at all times; it will have to be squeezed in between nursery runs, music classes, hanging out the laundry and cooking the dinner (there’s that guilt again). But also because I hope I can combine teaching him with holding him. The first step to sitting is to get him holding his head up, strengthen his neck through spending time on his front. And the easiest way to do this is to lie him on his tummy on mine. Skin-to-skin, heart-to-heart, looking into each other’s eyes and building not only his strength but his confidence in our unfailing love and support. I hope this challenge will be easier met because he knows we’re doing it together.


Wishful thinking

I’m sure he’s purposely trying to move now, to influence his environment. When I lay him on the floor he twists his body as if trying to roll over. Sometimes I find him gripping his toy or his blanket. When I hold him I think I can feel his arms curling round, holding me back. Recently he’s even brought his hand to his mouth a few times and sucked it…

… Or did it just end up there and get accidentally dribbled on? Is this all just a mother’s wishful thinking, clinging on to some small signs of progress after eight long months when his hands and feet were permanently purple because they simply weren’t moving enough to keep warm.


Most of his movements seem involuntary and undirected, firstly because they are often separated from their stimulus by a long period of time – I admit his responses aren’t he fastest, and secondly because they tend to go in the opposite direction from what they are trying to achieve! When presented with a spoon or a breast his initial response is to stiffen and jerk his head away, an involuntary reaction that must be even more frustrating for him than it is for me. Understandable then, that to anyone else they seem completely random.

And does it even matter? Even if his movements are completely random muscle spasms, perhaps treating them as real, encouraging, helping and praising them often enough, might just start to reinforce them. After all, that’s how we all learn isn’t it? A process of evolution. We start out making chance noises and movements, then learn to repeat the ones that achieve something or get a response, while the ones that don’t are gradually filtered out.

I guess this is a dilemma we’re going to face repeatedly: how to help and encourage him to reach his full potential (whatever that may be), without causing him to suffer by pushing him to do things he will never be able to do.

So, for now, I’m going to assume that if he can do something physically he may, consciously or subconsciously, today or some day, want to be able to control it mentally and neurologically. When he twists as if to roll over, I gently roll him the whole way. When I find a toy in his hand, I will bring it up to his face, rattle it, squeak it. When he hugs me, I hug back, as tightly and as warmly as I can and for as long as he will let me.

Call it pushy parenting, call it wishful thinking, I’m going to believe that he can do it and what’s more that he knows what he’s doing.