Occasionally, I find myself thinking back wistfully to Autumn 2009, when I was a brand new mother and I could generally be found with my new gaggle of girlfriends in Costa Coffee. We would turn up with our enormous travel systems that took up half the shop, commandeer the squashy sofas, and spend hours discussing such topics as the merits of the Baby Whisperer versus Gina Ford, the latest updates on bowel movements (the babies’, mainly) and whether weaning with baby rice at four months might be the key to the holy grail that was a full nights’ sleep. Sometimes, it would be 4 o’ clock before we left, and that was only because the men were due home and we needed to have a quick tidy round so they thought we’d actually done something all day. But that was ok, because we were so knackered. Having a baby was so hard.
Actually, I shouldn’t make light of it. Having a newborn really is hard. But despite the sleep deprivation and cracked nipples, I will always remember feeling so content at that time because whatever I was going through, I could guarantee one of my new posse were experiencing the same thing. I will never forget my first conversation with one of my closest mummy friends, which took place while she was changing a nappy. It went something like this:
‘Did you know you have poo on your arm?’
‘Ohmigod. No. Thanks.’
It’s hard to put my finger on exactly when this happened, but as our babies became toddlers, there was a subtle shift in the dynamic of these meetings for me. Where I had once nodded along knowingly when someone made a statement about what new skill their child had mastered that week, I suddenly started to feel that things were being mentioned that, well, just didn’t really ring true for James and I.
You hear about the competitiveness of new mothers before you become one, and frankly, it all seems a bit pathetic. Who cares if little Freddie mastered walking at nine months, or Millie was speaking in sentences aged one? They’ll all turn up on the first day at school walking and talking, I thought. I hadn’t reckoned upon how fiercely protective you are of your own, how every tiny achievement warrants a Facebook update about how completely amazing they are, how you secretly think that your child is soooo advanced compared with all the others. It’s the natural lioness instinct.
So when I suddenly got a niggling feeling along the lines of: ‘hmm… actually… mine isn’t doing that yet’, I did my best to push my doubts to the back of my mind. He’s a boy, I thought. Boys are always later to speak and interact with you. They are far too busy climbing the bookshelves and destroying stuff. He’ll be fine.
But a crucial moment of realisation that something wasn’t quite right came at James’ one year check, when it emerged that he wasn’t waving, or pointing to things. The health visitor assured us that this was ‘probably nothing to worry about’, but that she would call back in a couple of months just to check his progress.
We were left feeling both deflated that James hadn’t simply been rubber stamped as ‘textbook’, and a bit, well, confused. We’d never had a moment’s worry that he was physically behind. Why were pointing and waving such a big deal, anyway?
Waving and pointing are things that parents take for granted to the extent that they are barely considered milestones, but actually they are more important indicators of development than first words. When a child waves hello or goodbye to you, they have worked out that you are a separate entity from them, and they are acknowledging your presence. It’s one of the first major social skills a child learns- the greeting. As for pointing- when is the last time you pointed to something when you were the only person in the room? You don’t. The reason we point is to involve other people in something that has taken our interest. It is a social act.
So when you think about it, it makes total sense. For a child like James, who is severely delayed in social and communication skills, it is no surprise that the absence of waving and pointing were the initial ‘red flags’ that all was not well. Lots of children are late talkers, and the majority get there in time, some with the help of additional therapy. The difference with James was there was a noticeable lack of interaction, which is far more than just words. At the outset, it is something as basic as eye contact, which with James was not completely absent, but fleeting. It’s something as simple as bringing an adult a toy or a book to show them. It’s responding when their name is called.
With hindsight, James was also displaying some typically ‘Autistic’ behaviour around this time, such as flapping his hands when he got excited, and obsessively spinning objects. I didn’t really pick up on this, because kids do funny things all the time, don’t they? James was our happy, if a bit quirky, little lad and his ‘James-isms’ used to make us chuckle.
Even so, there were times when a little voice in my head would ask, ‘why is my child just so much HARDER than everyone else’s? Why can’t we do a simple thing like a picnic in the park without me running around like an idiot, my hair plastered to my forehead with sweat, trying to stop James from jumping into the lake or braining himself on the see saw? WHY WON’T HE JUST PLAY NICELY WITH THE OTHER CHILDREN!??‘ It was like he was in his own little world.
At Christmas 2011, when James was two, those little niggles I was trying to ignore were forcefully brought to the forefront of my mind by the comment of a relative.
‘I’ve never met a child like James before… He just completely blanks you’.
At that moment, my world imploded. Despite my personal worries, I simply couldn’t bear the idea that my little boy might appear ‘odd’ to anyone else. And since until that point no one had suggested it, I had done a pretty stellar job of burying my head in the sand.
To be fair to James, I need to clarify that actually he doesn’t ‘blank’ people as such, although I can see how it seems that way. To ‘blank’ someone implies wilful ignorance – in other words, it’s rude. As I’ve said before, being rude demands a level of understanding of social expectations which James doesn’t really have. A situation like Christmas, where normal routine flies out the window and the house is suddenly filled with unfamiliar people, is overwhelming for him; his coping strategy is to retreat into his own little world and tune people out like white noise. Unfortunately, wider society’s misinterpretation of this type of behaviour is what gives fuel to the myth that autism sufferers are cold, a notion which breaks my heart because James is actually one of the sweetest children you could meet.
Still, I owe that relative a debt of gratitude, because having the guts to speak their mind finally forced me to wake up. It wasn’t just me. Something wasn’t right.
In early 2012 I finally plucked up the courage to request a development assessment for James, and my fears were confirmed. At 30 months, his cognitive and social development was roughly that of a child half his age. ‘A baby’, I remember thinking despairingly. In some ways it was a relief to know I wasn’t simply being neurotic – but I had desperately hoped to be proved wrong. That day, after the health visitor left, I cried and cried. For the first time, I didn’t have another mother to turn to and compare notes. Somewhere along the line, without me truly realising it, we had been left behind. And what was even more frightening was that I now didn’t know what to expect.
Cutting a very long story short, the next two years were a journey along a very different path, culminating in a diagnosis of Autistic Spectrum disorder shortly after James’ 4th birthday. From my initial devastation, I learned acceptance. Things were going to be different for us. But that didn’t necessarily mean they had to be bad.
I heard a wonderful analogy recently by Emily Perl Kingsley that adeptly explains what it is to be a parent to a child with a disability. The discovery that you are going to have a baby is a little like planning a holiday. You are off to Italy. You buy the Lonely Planet guide, work out the best places to visit and learn some of the lingo in preparation for the trip of a lifetime. However, when your plane lands, you discover that you are, in fact, in Amsterdam. Initially you feel disappointed- this isn’t what you signed up for. But since you have no option but to just go with it, you go and soak up what Amsterdam has to offer. (I’m not specifically referring to cannabis cafes and the red light district here, but I guess to make the metaphor work, you could say you come to appreciate the ‘quirkiness’ of Amsterdam.) You chuck the Italian guide books and buy new ones, and you pick up a different language.
Yes, you didn’t end up with the experience you were expecting, but in the end you realise that’s ok, because had you gone to Italy you never would have experienced the delights that Amsterdam had to offer.
I love this analogy, although I have to say it does have a small flaw for me. The thing is, for the first year or so, I did think I had landed in Italy, so to speak. But that is the part that I consider that to be a huge blessing. I might miss Italy from time to time, but had I known from the word go that James had autism, perhaps I would have experienced a sense of a loss of the ‘perfect’ child I never had. Maybe not… I will never know. But as far as I was concerned, James was perfect in every way, and that has never changed; because I fell in love with the boy that he IS. He is different, and he sees the world differently. He has made me see the world differently. But to me he will always be perfect- because he is James.