Baby steps

For me, one of the challenges of living with James is that nothing happens fast - at four most children are making massive developmental steps forward, preparing for the start of school (if they live in the UK at least - there's a whole debate about whether we should be delaying school starting age, fuelled by this latest research that shows that children from the Scandinavian countries, where they start school at around 7 or 8, actually do better than those educated in the UK). Their conversations take on real meaning and you can begin to rationalise with them (although they are often not rational beings - only just out of toddlerhood and still prone to meltdowns, tantrums and tears). They have a sense of self and are beginning to develop a sense of justice ("that's not fair" seems to be a popular phrase among James' peers at the moment!). In comparison, James is still like a toddler, having little awareness of anyone other than himself, no awareness of danger, barely communicating his needs, still wearing nappies, easily distractable and still needing fed. But he's a toddler in a four year old's body - he can reach the back ring of the hob, he can unlock the front door, he can unscrew the wine bottle, he can open all the cupboards that don't have child locks, he can climb on the table to reach things, he can scale bookcases - you get the picture! I have to be far more vigilant about him and what he's up to than I am about Bea. It's hard work, but someone's got to do it. So I celebrate every single baby step forward we take and today we had two. I'm opening a bottle of wine after I write this!

Like many autistic children, James has a range of foods he will eat and a range he won't touch. But this wasn't always the case - James was a dream to wean, eating anything and everything (except peas - he could spy one a mile off and spat them out in disgust). He has always loved fruit in all forms and ate vegetables with gusto. I was so proud that my approach to weaning him (rather slap happy and disorganised) had worked so well - there were only two things he refused to touch, ice cream and sweets!!! What mother wouldn't pat herself on the back? Imagine my horror when I discovered, about 5 months after we had started the ball rolling towards his diagnosis, that my easy going child had actually stealthily started refusing every single vegetable. He had systematically rejected them over a number of months and I'd hardly noticed as I'd been so preoccupied with getting him and us the help we needed. Luckily this "fussiness" never extended to the same extent to fruit, so I know he gets his five a day regardless. I have never really pandered to him - I still cook and serve him vegetables in all sorts of different forms, and nothing is ever off the list. I always put a few of whatever vegetables I've cooked for the rest of us on his plate, and accept that I'll probably throw them away, but you never know.... As if to prove me right, today I had cooked a pasta dish with chicken, peas and pancetta. James usually eats this by picking out all the pancetta (his favourite bit - I think the saltiness appeals to his tastebuds), then eating some pasta and then eating some chicken, with a bit of encouragement. Today he surprised me by reaching over into my bowl and picking out two half peas. They had popped out of their skins and he just popped them straight in his mouth, none of his usual inspecting, considering and touching them to his lips. So I popped another one out of its casing and passed it to him. Again, he ate it. So I did it again, and it was eaten without hesitation. Then I gave him one with its skin still on - this was the big test as the skin changes the texture and texture is very important for people with autism. Well, to my surprise, it was accepted as were another couple of dozen peas. It may be a handful of peas to you, but for me it feels like a breakthrough - he'll probably reject peas again in a month or two but for now at least I can get one vegetable down him!

I remember the day I brought Bea home from hospital. James had visited us, but had been more interested in turning the taps on and off (I had felt a degree of unease about this - almost every autistic child I had seen in my clinics had had a fascination with hospital taps, but all the midwifery staff said every new sibling was the same....). We had made a fuss of James as all the "experts" had suggested but he wasn't interested in us OR the baby. We didn't take too much notice and just let things be. But there was something rather peculiar in his reaction when Bea arrived home - he just didn't pay her ANY attention. He would turn away from her if we tried to get some interaction between them and when we put her in the bath with him he did a 180 degree turnaround. He cast her occasional sideways glances (using his peripheral vision - a phenomenon seen frequently in people with autism), usually accompanied by a look of disdain. If someone asked him who was in the buggy or what his sister was called he would reply with her name and we'd both smile, proudly, but that was the extent of his interest in her. He didn't even respond negatively to her presence - I think the first time he actually intentionally hurt her to get attention was when she was at least 6 months old. People used to placate me, saying that babies are boring for toddlers and he'd get more interested in her when she could sit up/play with him/began stealing his toys/started to walk but to this day he remains cold and unconnected. Almost daily it breaks my heart to see my doting 21 month old following her big brother like a shadow, desperate for his attention. The occasional interaction she gets with him is almost always instigated by an adult - I can ask him to kiss or hug her and he sometimes does as asked. For a while I've been trying to get the two of the them to hold hands - usually met with enthusiasm from Bea but never from James. Today we took a baby step - well, actually we took about 200 steps with the two of them hand in hand. I swelled with pride and tears welled in my eyes as we walked along the pavement, my two children hand in hand in front of me looking to all intents and purposes like two loving, sharing siblings. A moment of normality among a lot of difficult times.