When life doesn’t go according to plan…

Jonah broke his collarbone falling off a slide on Sunday. Sick with the pain and with his shoulder clearly tenting at an angle, I called the ambulance as I fed him fruit stars to keep him from falling into unconsciousness. Unlike me, I was calm, deadly, as others flapped around me. As the ambulance crew struggled to reach us, I ran out beckoning them over.  She, the emergency responder, immediately all up in his face, asking him questions, trying to ascertain from him, not us, the potential parental aggressors, how it had happened and why.

 “He’s on the Austism Spectrum,” I pled as he remained silent, crawling inside himself to deal with the pain as I had in the later stages of his birth: his eyes black and every so often losing consciousness.

But, then,  keeping it factual and not chatty,  he managed to say how old he was, where he lived and that he had fell, not been abused in some hideous way. Dosed up on Calpol he was a complete hero all the way there, and throughout, only faltering when he saw the X ray and fearing that, like a teacup, he could never quite be mended.  The doctor, who talked him through the X-ray, at a nudge, explained to Jonah that it would heal, perhaps even better than before,  and at the doctor’s authority, Jonah accepted this without question, the furrow clearing from his brow. It was only after we got home that I became faint and dizzy as the adrenaline left my body.

Reading through writer David Mitchell’s My Son’s Autism, this morning, reminded me of the hideous gradual revelation of Jonah’s autism, the symptoms – if you can call them that – that daws so slowly yet so insistently over a period of months and years and then gradually, peel back, as you, as parents, learn to deal with them and your child’s social learning catches up with their peers; when they surprise you with what they can do, rather than frustrating you with what they can’t. It reminded me of what I had written during the peak of this time, when it was becoming apparent that all was not ‘normal’, and I was in despair.

 The following was written in May 2010, when Jonah was four, and I was at the end of my tether. It’s interesting to read how desperate I was feeling at the time, fearing for the future, and wrung out with worry and day to day care of a difficult child. I can read this now, and laugh at myself, for being so tied up in knots about things that have actually turned out fine.  So here goes. Have a bit of my soul with your toast, or whatever it is you’re doing as you read this. I’m done with it:

My son has Asperger’s. I hate it. This is not an attempt to put on a brave face. I do that every single day. This is the truth and it’s not going to be pretty. Not like my son. He is possibly the most beautiful human being I’ve ever seen, all chiseled cheeks, slanty blue eyes and floppy golden hair. I’m not even being biased. He actually looks like a young Leo DiCaprio. No better. I would be surprised if his taut little stomach ever ran to seed. He is exactly the sort of boy I would have lost my heart to as a little girl. And I have lost my heart because he will never really love me back. Not really. Not like I am capable of loving.

Let me tell you a quick story. I’m good at that. I do it all day, at home with the kids. Sometimes it was the only thing that would keep him still, allow me a moment of skin contact before he would squirm away. Once upon a time, I did lose my heart, to another boy. Completely gaga, I was, as only a twenty year old can be. The problem was, he was completely the wrong person. I mean, we were on different planets. At first I thought it was just me, and that maybe he wasn’t that bothered. That’s fine. You can’t expect everyone to fall at your feet. But there was more to it than that. He bristled if I touched him. He couldn’t look me in the eye if I tried, he seemed to almost short circuit. His obsession with music was all-consuming. His posture was gauche, floppy. He spoke in quirky diatribes, not actual conversation. If he didn’t want to do something, there was no persuading him otherwise. It was a weird relationship and one that kind of broke my heart, because I couldn’t change the way he was, or get through to him. He was what he was. I realised as time went on that he was Asperger’s, and couldn’t see the world through my eyes. No wonder my emotional outburst left him withdrawn.

But this experience left me acutely aware of how differences in people’s brain could leave them strangers. Maybe it made me obsessed with Autism. It certainly made me fear it.

The signs were always there. People would peer into Jonah’s pram as a baby, expecting a gummy smile, to be met with a frown. “He’s very serious”, was the usual remark. But I would just give him a kiss and say “you’re not serious, just discerning.” Quite how discerning, I didn’t realise.

My mother complained that there was no “chocolate laugh “ that she remembered from our baby days, although looking back at photos I see him toothily grinning, waving his toys, so I must have forgotten.

What I do remember is the tiredness. Tiredness that has scarred me for life. Tiredness that suckered the life out of me, making me listless, numb, depressed. You see, it wasn’t just the nights, which were torture. I was a new mother, after all. I expected, and got the worst.

But the days were no fun too. I fed endlessly. My tit became his dummy. Then later I couldn’t do anything quick enough. He would howl at a moment’s delay in getting his bottle, his teddy, his toy his book. Only to throw it off the table. So much, so normal, right? Other mothers sympathised with me, and I kept my sense of humour. For a while.

Playing was a series of experiments. Did this fit into that? Shape sorting, later, puzzles, to be followed by endless, endless tracks. It was all systemizing, no imagination.  At 18 months he was numerate. Counting religiously up the stairs, and in French too – although this was my fault: alpha personality. First time mum. Neurotic combo.

He had his ABCs down pat too, indeed anything that could be learned by rote. I was boyantly proud, but at this stage his social skills began to take a turn for the worse. He began to push other children, relentlessly, and at first, without discernment. There was no stopping him, so I found myself leaving social gatherings, and slowly, invitations for play dates began to dry up. Potty training too was a headache that we’re still battling. I blamed myself. We started too early. He’s a boy, people said. They take longer. He’ll get there. I began to lose my patience with him, and get frustrated as week in, week out, it was nothing but wet pants and wet sheets, and leaving it so late he hops until the inevitable happens.

The worst thing about all this is what this has done to me. My son is largely insulated from the effects of his problem, although he is not made of stone, and the prognosis is that failed attempts at interactions with his peers will leave him increasingly withdrawn. He was actually quite sociable as a toddler, although more and more I see him rejected by his peers, content to wander the playground alone following lines hither and thither, but never joining in. But for now, his problems with communicating aren’t affecting him too much. At least, he is nonplussed when I lose it, which happens all too often these days.

I finally took him to see a child psychologist when the school started to make noises about his social difficulties and special needs. No one wants to hear that about their baby. But I needed answers.

He performed okay in the sessions, answering her questions, characteristically squirming on his tiptoes and playing, in his way,  by lining up the cars, his floppy hands trying to draw lines with crayons. He clammed up when she asked how he felt when mummy was sad.

It happens all too often these days. The only painting he has ever made was a circle, and where the paint splashed he had laughed maniacally saying over and over again “Mummy crying”, until, like a child myself, I blubbed.

He peered into my distraught face, tears flooding down my cheeks, his far away eyes seeing through me, trying to understand what was making me upset, but failing.

“Oh Mummy,” he said, patting me awkwardly on the arm. And then, he pulled a face. He was trying to make me laugh. Bless him for trying.

You see? He simply doesn’t understand the rules of social interaction. If someone says hello he looks down at his feet.  He’s begun to get tired from social situations, wanting to get some peace and quiet. The singing classes he once loved he now spends following the lines in the wooden floor. Take him to a playgroup and he won’t paint, won’t sing, won’t play, but fiddle, shout and talk at tangents about cranes or scaffolding or whatever his latest obsession with an inanimate object is.

Perhaps in a way, he’s lucky. He has a single-mindedness that I seem to lack – he may well have the tenacity to start and project and see it through to completion, undistracted by events of diversions.

But the prognosis for his inability to empathise is he thing I find the hardest to comprehend; feeling people’s pain is one of my specialties  and I wear my emotions like a badge. I think there’s even a condition for this, whilst we are pinning labels on people.  I was told by the school “inclusion coordinator  that I had to learn to love him as he is.  But being so single minded and self-involved, angry and determined, he can at times be really hard to like. But while he may be angry and frustrated,  I’ve never seen him sad. And that has to be a good thing.

Reading back on this from several years distance, it is me who seems self-involved; depressed; lonely.

Jonah was dry at night by the end of the summer. He made friends at school. He started to cuddle me and tell me he loved me. Above all he grew up a bit, and I see as always my expectations were probably a bit high.

But for anyone else who is struggling with a child who seems to be doing things differently from their peers, it can be hard not to worry excessively, particularly for a first born, particularly when you’re in the trenches, wading through sand on sleep deprivation, and stuck in a deep well of depression.

Jonah is still difficult, but nothing like he was as a toddler, and much of it was my misplaced expectations and inexperience as a parent. But not all of it, and for that I ask some modicum of understanding. Coz it was tough.

Life’s not what I expected when I had my baby boy. But it’s not as bad as I imagined it might be when I was raising my toddler either. Our lives may have felt broken, but it’s mended – and better than before.

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