The Fear

This week I encountered The Fear. He was on a holiday park in North Devon, of all places, roaming between the static caravans that sit on a hillside overlooking the bay. I’m pretty sure most parents meet him at some point, but this week was my turn.

I’ve been anxious about Izzie before, concerned about her safety, worried about the future, but it’s always been small scale, fantasy-land fear, the kind you get before the dentist or a particularly unpleasant meeting – you’d rather avoid it, but you know that if you have to face it, you’ll get through the discomfort because it’s not really actually all that bad. The Fear is another matter entirely.

It crept up on me unannounced. Everything was fine – a bright, crisp morning, fluffy white clouds scudding across an azure sky, the ocean stretching out below us towards the horizon. Lizzie was walking down the hill holding Izzie’s hand and while I locked up the caravan, my little girl looked over her shoulder at me, the breeze tousling her hair. Her face was a picture of innocent joy, her toothy smile so infectious as she waved at her daddy that in that moment I knew what it was to be loved and what true happiness felt like.

And an instant later I was struck by The Fear – the all-pervading, nausea-inducing, gut-wrenching, knee-weakening presentiment that I would lose her.

The closest I’ve come to this feeling before is when Izzie was around three months old. I went into her room in the middle of the night to check on her and she was so still and quiet I thought she was dead. My first thought – nay, instinct – was to travel to wherever she had gone, because she needed me and I couldn’t bear the thought of not being there for her. Short story even shorter, she wasn’t dead, she was just asleep – but the incident cleared up any lingering doubts about whether I truly believed in the hereafter.

The Fear wasn’t like this at all. It didn’t come from anything scary but from something joyous. It was as though upon reaching the heights of happiness, my body reacted and rebelled, viscerally and violently. Out of the clear blue sky I was filled with the most terrible and heartbreaking dread.

I’m not just talking about death, though that’s a given – cancer, meningitis, kidnap, murder, an accident, The Fear showed me it all – I’m talking as much about change. If I could have frozen that moment she waved at me with innocent joy, I would have done, because right now Izzie adores me – I’m the smartest, coolest, funniest, most-lovable chunk of a man she knows. But all that will change, and quickly too. My days as my daughter’s faultless hero are well and truly numbered.

I spent all that day with The Fear. Maybe, I thought, it’s here because I was talking to somebody about Seneca a few days ago, and his belief that your mind is the only thing you can rely on as everything else you can lose – friends, family, status, job, home, health, hair, all of it. Or maybe, I thought, I’m preoccupied with losing Izzie because police believe they might be days away from locating the body of Ben Needham, a British 21-month-old who went missing 25 years ago in Kos. Or perhaps it’s because I had the unfortunate experience of overhearing a fourteen-year-old girl and her mother screaming life-affirming statements at one another like, ‘I’ve effing had it with you,’ ‘you effing well ruin everything,’ and, ‘I wish you were effing dead!’

But that’s not it at all. If it was, The Fear would be with me all the time. No, it’s because in that moment of perfect happiness I realised my unbridled love for another person – and simultaneously my utter and total vulnerability. Izzie has me, heart and soul, and if anything happens to her, I would be destroyed. The Fear was a safety mechanism, a reality check, because I was walking too close to contentment, and believed my happiness to be immortal. Keep away from the sun, Icarus, or you’ll fall into the sea.

And that is the dilemma of parenting. You give yourself and hold nothing back, but in so doing you risk everything. Your fate is tied to that fragile, fickle bundle of cells you call your child. And the price for your joy is The Fear, cropping up when you least expect him, reminding you you’re dancing with a moonbeam that can never be contained.

But in the meantime, long live this moment.

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Don’t panic! It’s just a tummy bug.

I’ve mentioned vomit before on this blog, and it’s always been described rather casually. ‘Ha-ha, she threw up over me,’ and suchlike. ‘What a great dad I am: I get puked on and take it in my stride. Yay me!’

Those were purer, more innocent times, the halcyon days before the fall. The fact is, I had no idea what vomiting truly was. The couple of tablespoons of white, milk-like up-chuck, even when tinged with mucus, are nothing – nothing – compared to the end-of-the-world style vomiting of a stomach bug. And having now experienced that, I will never be casual about vomit again.

When Izzie woke crying at four o’clock Thursday morning, her bed sopping wet with sick, my instincts told me something was wrong. She’s not a sicky baby and vomiting overnight is certainly unusual for her. It was, however, just the beginning.

I picked her up, made her some milk, fed it to her, sat her down, and watched as the Gates of Hell opened and spewed forth an ocean of vomit. In all honesty, it was frightening seeing so much liquid propelled so widely from something so small. It formed puddles in her lap and on the carpet, was so bad that even Lizzie got up (unheard of before half-seven) to help change clothing and bedding and mop it off the floor.

After settling Izzie onto newly-clean sheets, I spent the next two hours on the internet becoming an expert on all aspects of childhood vomiting. The main stipulation of the sites I visited was: don’t panic! It’s only vomit. Keep her hydrated, be gentle with her belly, and stop being such a wuss.

Now, being an overprotective (read: hypochondriac) dad, I’ve had to develop a hard and fast rule on baby illness so I don’t turn her into a medical guinea pig that gets rushed to the doctor every two minutes: if she’s happy, playful and eating, and has no obvious signs of illness such as a temperature, blood coming from her ears, or buboes, she’s probably okay. So in the morning when Izzie seemed bright and breezy, we got on as normal. Lots of water to rehydrate her, and oodles of bland milky porridge and a banana to settle her empty stomach.

Slightly neurotic about her dying of thirst, and the ensuing inquest where we’re deemed to have been neglectful parents followed by a media witch hunt that hounds us out of the country, I sat her on my lap on the sofa to give her a top-up of milk. And two minutes later, with a little feminine toss of her head, she exploded all over me.

When I say exploded, I mean that stuff just flew everywhere. I was wearing T-shirt, shirt, trousers, boxer shorts and socks, and the only thing I didn’t have to change were my glasses. The last time I was covered in hot, smelly sick, I was nine years old, wearing blue and white striped pyjamas, and I remember feeling unclean and ashamed. In an instant, I was that child again and unable to move.

I shouted for help, which is what I’d done as a nine-year-old. Unfortunately, Lizzie chose that moment to have one of her autistic episodes – overwhelmed by the knowledge that she couldn’t go to baby group and would have to change her plans, she became angry and overwhelmed, so had to go and have a time-out to calm down. Gee, thanks, honey. It’s not like it’s soaking through to my skin and dripping from my fingertips!

Luckily there was a support worker present, who definitely earned her pay and saw more of me than she probably liked as I peeled off soiled clothing layer by layer then dealt with the baby in just my underwear.

Water was the order of the day. Sips of water, the websites say. No food for about six hours, then small amounts of bland stuff to settle her.

Izzie didn’t act ill, not at all – she was playing with her toys, standing against the furniture and getting up to her usual high-jinks. So mid-afternoon, when she was clearly hungry, I gave her the blandest porridge in the cupboard, which went down a treat, followed by fromage frais and then half a biscotti. She seemed happy as Larry, so I made some milk, sat her on my lap on the sofa and –

Instead of describing in graphic detail what I’ve already covered before (explosion, ‘help!’, oh god it’s so warm and smelly), minus Lizzie’s time-out but including the ‘assistance’ of Ozzie the dog in clearing up, here’s a picture of Izzie with bunny ears:

IMG_0856
Cute

While I was changing into my third set of clothes for the day, Lizzie’s cousin texted us to say her little one had had a similar thing earlier in the week, a 24-hour vomiting bug. Provided you can endure and make sure she drinks plenty, it passes. So armed with this knowledge, we tried to force dioralyte down her throat to rehydrate her (see above about hypochondria), which was a horrible failure, switched back to water, which was a success, and put her to bed.

Today, she seems much better (touch wood), but since the three vomiting episodes were triggered by milk, we’ve avoided risking giving her anything but water. I’ve discovered from my research that babies can develop lactose intolerance from tummy bugs like viral gastroenteritis, meaning milk makes them vomit and you need to give them lactose-free milk for up to four weeks until the gut recovers. Gosh darn it, why do babies always get ill on four-day weekends and bank holidays?

What I’ve learnt from this experience is just how frightening it can be for a parent when their baby keeps vomiting. I mean, at one point I seriously expected her head to rotate three-sixty degrees and Latin phrases to start bursting from her lips. You think it’s going to go on forever, that every drop of water or morsel of food will come back with added force. But it passes. Thank God it passes!

It’s also an eye-opener how vulnerable you can feel when covered in someone else’s vomit. Forget waterboarding, try a baby with a vomiting bug! But on the plus side, there are far fewer poopy nappies to deal with.

One thing’s for certain: I will never be nonchalant about sick ever again!

Asperger’s, Parenting and Unexpected Change

As is well-covered in the literature of autism, people with Asperger’s have a love of routines and struggle to cope with change. What I’ve been realising lately is that this bald statement covers up the nuances of what this means in practice, particularly when you’re the parent of a seven-month old.

And it can affect two people with AS in opposite ways.

I cannot handle change in terms of things being added. I need time to process and accept things that are coming up. Ever since I was a kid, I needed plenty of notice – at least a week – to get my head around a visit from relatives, a trip out somewhere, or anything out of the ordinary. If not, I tend to moan, kick up a fuss, say some nasty things I don’t really mean, and then go along with it anyway. But I don’t have much of a problem with things being cancelled anymore – indeed, the principal emotion is relief I don’t have to go through the effort of painting on my ‘public’ face and holding onto a fake smile for however many hours. I would be a hermit if I could get away with it.

Lizzie suffers the opposite extreme: she can’t handle change when it’s things being removed. She is mostly fine with things being added to the routine, especially if she’s the one doing the adding, but if something is cancelled her first response is to throw a tantrum. I liken it to a person walking along a road and finding a brick wall blocking their path. While other people would try to find a way around it, or else turn back, Lizzie bashes her head against it until one of them gives – sometimes the wall, but most often the head. Actually, scratch that – most often the heads of those around her.

Babies, as some of you are well aware and others can easily imagine, are unpredictable. Not only that, the world becomes unpredictable when you have them. Visitors arrive with little or no notice, longheld plans need to be dropped without warning, and you have to rush off to the doctor out of the blue. It’s impossible to say which of us struggles the most with the changes having a baby has brought to our lives, but I can guarantee that I suffer the most.

Now, when I say ‘suffer’, I’m not being melodramatic. I’m not talking about the discomfort I feel at friends, relatives and healthcare professionals clamouring for our time or pitching up on our doorstep unannounced. Nor am I talking about the disruption that sudden trips to the shops for some vital knick-knack cause to my quiet, ordered life. Fact is, the baby’s needs come first. I have accepted that. My needs, as an autistic individual, are immaterial next to hers. I have made that choice.

Unfortunately, Lizzie is either unwilling or, by dint of her condition, unable to make that choice. And so I genuinely suffer.

Like before Christmas when Izzie had a cold and I hadn’t slept for two days. Sunday morning I was so tired I couldn’t see straight, my back ached, I was covered in snot and dribble, and my throat felt like I’d been swallowing razor blades. I hadn’t had the chance to drink, eat, go to the bathroom, since the night before. When Lizzie arose, well-rested, and made herself some breakfast, I asked her to please look after the baby for an hour to give me a rest. But she had planned to go shopping, and, unable to alter her plans, she toddled off for more than three hours of non-essential retail therapy. I suffered.

Or like a couple of weeks ago when I got a migraine about teatime. Lizzie had planned to go out, so out she went. I couldn’t open my eyes more than slits as the light burned, I kept seeing spots of light dancing in front of my face, and my head throbbed with every beat of my heart like somebody was burying an axe in my skull. Every time I bent forward, it felt like my brain was being forced out of my eye-sockets. But I duly bathed the baby, gritting my teeth and shouting in pain whenever it became too much; hissed as I dried the baby; roared as I dressed her in nappy and sleepsuit; cried out as I placed her as gently as I could into the cot; snarled as I sang her to sleep. And then I collapsed, nauseous, into bed. I suffered.

Or the other week in the storms – our village turns into an island during heavy rain, and three years back I wrote off my car by driving into floodwaters (the single-most butt-puckering moment of my life!). So although we’d planned to take the baby to town, I refused point blank to expose her to the risk of getting stuck down some country lane surrounded by cows pretending to be ducks. The sensible thing. Unless you have autism and can’t change plans, in which case you kick off like a wild animal, say some truly awful things, and then go out anyway sans partner and baby. It was only later she admitted I was right, it had been too wet and downright risky to go out in that weather, with or without the baby.

Now, as this is mostly a positive, light-hearted blog, I’d like to say that whenever this happens I smile wryly, roll my eyes, say, ‘That’s Lizzie!’ to hoots of canned laughter, accept that it’s just her autism, and forgive and forget.

But nor is this a fairy tale.

There is a lingering resentment bubbling away under the surface as my needs, and Izzie’s needs, repeatedly come second to Lizzie’s inability to alter her plans for the greater good. Whether she can help it or not doesn’t matter – the resentment is there.

I have heard it said before that partnering a person with Asperger’s Syndrome is a form of abuse – not for the Aspie but the poor neurotypical saddled with their unreasonable behaviour. As someone with AS, I disagree with that, but let me be clear – people with Asperger’s can be cold, insensitive, selfish pricks at times. That’s the reality hiding behind the innocuous words, ‘people with Asperger’s have a love of routines and struggle to cope with change’.

Endless changing

When you’re having a baby, you expect its arrival to be the Great Unknown: you’re going to jump off the edge of a cliff in the night, with no idea what awaits you. But once you get into it, you’ll get into a rhythm, and the changes from then on will be incremental and manageable.

Not so. Not so at all.

Sure, the birth and first month is like leaping – falling – into the abyss, but gradually you learn how to fly. You learn to interpret the sounds the baby makes and what they mean, become adept at nappy changing, feeding, prepping bottles, soothing her. You work out ways of carrying her that are safe and don’t break your back or your arms, get into a routine, discover you can cope with the lack of sleep and the irritations of cold or skipped dinners, vomit-stained clothing and the ever present weight of responsibility. Things are getting easier. The future looks rosy.

And then, around three months, it all changes again.

She suddenly makes different sounds, different facial expressions. Whereas before, you knew exactly what she wanted and could meet her needs right away, now you can’t anticipate them at all, and you only realise she wants something after she’s started screaming. But on the plus side, she starts to sleep through the night and you have time on your hands and no idea what to do with it. You’re now an expert at nappies and bottles. You’re finally getting a handle on this parenting thing.

And then around five months, it all changes again. She wants to roll over all the time, so nappy changes turn into a nightmarish battle of wills. She starts waking again in the middle of the night for two hours at a time, and you’re so out of practice at missing sleep, it hits you worse than it did the first time around. She wants solid food – well, mush – because the milk just doesn’t cut it anymore. And everything within arms reach is a potential hazard that if she gets her hands on goes straight into her mouth and causes her to choke.

But you invent new methods to cope. I kept losing count of how many spoonfuls of formula I put in her milk as I had to keep one eye on her, so I’ve scrapped the numbers 1-7 and replaced them with the words ‘Thumb, pointer, middle, ring, pinkie, thumb, pointer,’ along with visualising the relevant fingers. Such an effective method, I can have a conversation while doing it and still keep count.

And changing her is so much easier if you give her a plastic baby coat hangar to play with, as it keeps her on her back and keeps her hands busy (and thus out of her own poop). [But a word of warning on this technique – never use something big, like a teddy bear. I made this mistake yesterday. The first thing she did was rub it between her legs and smear poop all up her belly, so I tossed it aside and gave her a sock instead. Finished, I turned to recover the poop-covered teddy bear to find the dog licking it clean. Gross does not describe it!]

We are approaching another change. In the past three weeks, from six-and-a-half months to now (seven months and five days), she has learned to crawl, sit unsupported, remove her nappy, manoeuvre herself anywhere she chooses to go, throw her dummies across the room, and speak, albeit in Spanish (‘habla, habla, habla, habla’, which prompts me to reply ‘Espanol? No habla Espanol. Habla Ingles, por favor.’).

And suddenly she’s decided she wants to be a drummer. Everything’s a drum to her – the tray table of her high chair, her toys, the floor, the sofa, her inflatable donut chair, daddy’s belly, mummy’s boobs. It used to be ‘can I pick it up, can I put it in my mouth?’ It’s now ‘can I pick it up, can I slap it and make a noise, can I put it in my mouth?’ Anything comes on TV with a heavy beat, like the intro to Modern Family, she stops what she’s doing and stares transfixed at the screen. Weirdly, she didn’t bat an eyelid when a compilation of old Sugababes videos was on, but put on Bring Me The Horizon’s ‘Sleepwalking’ or ‘Shadow Moses’ and she’s fascinated (look them up if you want to know why that’s so unexpected! And yes, my musical tastes are eclectic).

And she’s started hooking things over her feet – any hoop or ring toy she gets she tries to turn into an ankle bracelet. The developments are coming so thick and fast – in sitting, crawling, walking, talking, facial expressions, reaching, holding, manipulating, weaning – that it’s hard to keep up. And she’s reached the point where she suddenly gets clingy and shy. A couple of weeks ago, she’d have gone with anyone; now, she glances at strangers then buries her face in my chest before glancing out again, or looks to me as if to say, ‘Is this okay, daddy? Are we safe? Or should I show this person the door?’

According to the Health Visitor, she’s way ahead of the curve, and she can’t believe how these developmental milestones have been reached so close together. Normally, she says, they’re more spread out so you have the chance to process them.

The end result of this is that Lizzie and I both feel we’re walking along the edge of an abyss. We can feel a giant change coming, a truly Great Unknown just ahead, invisible and unavoidable. We don’t know what it is – walking, words, a rudimentary nuclear reactor. We keep expecting to walk into the nursery in the morning to find her sitting dressed on the floor with a cup of tea, asking us whether we’d like one lump or two.

It’s not a very comfortable feeling. It feels like it did the week of the due date – like something huge and life-changing is rapidly approaching and we don’t know how we’ll cope and if we’re sufficiently prepared. Yet again we’ll have to find a way to adapt. And honestly, we’re both a little terrified of this unseen future.

So if you think having a baby will change your life, you’re wrong. It will change your life, then change it again, and again, and again, and again, and again…

Support for Parents With Autism

This is a long one, so brace yourselves.

There’s plenty of support for parents with autism. There’s also a total lack of support for parents with autism. Weirdly contradictory, I know, but read on and I’ll explain.

While Lizzie was pregnant with Izzie, we received plenty of support on account of our autism. They gave us a consultant at the hospital, sent us to a nutritionist, referred us to the ‘special’ community midwives and introduced us to our future health visitors. We also had an outreach worker from a local children’s charity who visited us every few weeks to make sure we didn’t need anything extra and were up to speed on the processes of labour, birth, and what comes next. Pretty nifty.

The ‘special’ midwives visited us every few weeks in the safety of our own home, and gave us extra time to explain things and iron out any problems. The team was so good that when Lizzie was sent home from hospital because they didn’t believe she was in labour, three community midwives turned up when the emergency shout went out, and two of them accompanied Lizzie in the ambulance.

We had meetings involving social workers, the local autism charity and representatives of the local council to offer their help and support, too. The unborn baby was assigned a social worker and our competence was assessed (and found to be fine). We were given a fake baby to look after for a few days and attended both NHS and NCT courses on pregnancy, childbirth and breastfeeding. The midwife team could support us for 28 days after birth; the health visitors could start from 11; and they’d see us every single day if they had to. Promises were made, support was offered, and our hands were going to be held right through the pregnancy and birth and into the future.

But it hasn’t worked out like that.

The main problem we had before the birth was getting Lizzie ready for her two nights in hospital. As a medically high-risk individual, she and the baby had to remain under observation for 48-hours. Trouble is, they wouldn’t allow anyone to stay with her overnight – visiting hours ended at 8pm and partners had to be gone by midnight, not to return before 10am – and as a highly anxious person with autism, a fear of hospitals and difficulties adjusting to new situations, Lizzie was terrified of being alone, particularly with a new baby.

Various people contacted the maternity unit on our behalf, and we were even given a tour of the birthing suite, postnatal ward, Special Care Unit, Neonatal Intensive Care Unit (NICU), and Transitional Care Unit (TCU) – all of which we unfortunately got to use – but they wouldn’t budge an inch: despite Lizzie not spending a night by herself for years, having six hours of support from the autism charity each week and a hell of a lot more from family, friends, and me, and struggling to communicate when stressed or with strangers, both of which she was going to be, they would not make any exceptions for anyone. The best we got was that the hospital would try to give her a side room on the postnatal ward, or a place in the eight-bed TCU, depending on space and circumstance. So she’d just have to grin and bear it.

As I have mentioned before, the labour and birth were a bit of an ordeal. Lizzie lost almost three litres of blood, the baby spent the first two days in an incubator on NICU and the next two in the special care unit, and then another three on TCU. I would like to say that the midwives and nurses and healthcare assistants were great, and they were, but one deep problem overshadowed that whole week: where was our special dispensation for being autistic?

‘Ah,’ I hear you say. ‘Why should you get extra attention for having autism? Never happened in my day. The midwives and nurses should have been able to support perfectly well.’

And yes, they should. But there are a couple of problems with that.

Staffing is the first issue. They don’t have the time to provide the extra support a person with autism needs. On the Postnatal Ward one night there was one midwife to cover 25 beds – so presuming one baby per child, that’s one person to care for fifty people. And Lizzie was in a side room. Did the midwife have the time to check on Lizzie, explain things to a greater depth, make sure Lizzie understood, and, more importantly, that she had understood Izzie? Of course she didn’t.

Things weren’t any better on TCU. You’d think that with eight beds supported by one midwife and one healthcare assistant, you’d be seen when there was a problem. But one night, it was ten o’clock, the staff had changed over at seven, we hadn’t seen anyone for four hours and my taxi (also named ‘Dad’) was due at eleven. We were worried about Izzie as she was jaundiced and not going to the toilet, and I was worried about Lizzie, who was freaking out, and I’d buzzed three times already, so I went to find someone. It turned out the two staff were feeding two sets of twins, and they told me to wait my turn. Hardly supportive of two desperate and terrified new parents, particularly if they both have autism.

Another issue is therefore understanding. I don’t know if they’ve had training in autism and Asperger’s – they should have done as a result of the Autism Act – but I had to explain to every one of them what it was and how it affected people. They all said the same thing – ‘Oh, if she needs anything, all she has to do is ring the buzzer.’ Even without a three hour wait, the simple fact is that Lizzie isn’t capable of asking for help. She shuts down when there’s a problem, goes into herself and stops communicating. And she pretends she understands things, or thinks she understands them, when she doesn’t. I watched midwives ask if she was okay and she smiled and they walked off when I knew there was actually something wrong. And I watched as people explained things to her and she nodded intelligently and then afterwards said to me, ‘What did any of that mean?’ This is why she needed someone who knew her to advocate for her, to talk to people on her behalf as the support workers and social workers had been doing. But they still wouldn’t let me stay.

Now, imagine you’re a twenty-nine year girl – perhaps not the easiest of things. Imagine you hate hospitals and have had to have counselling from various sources to face up to the fact that you have to spend two nights away from home. You’ll be away from your partner and your regular support network, and in addition, you’ll have the responsibility of a newborn baby that you have to look after alone, without your partner backing you up.

Now imagine that you have the baby, only it’s a terrifying nineteen hour ordeal involving ambulances, blood, screaming and pain, a spinal injection, episiotomy, failed ventouse and forceps delivery. Imagine you then haemorrhage and have to have two blood transfusions, while the baby is rushed off to Intensive Care in an incubator. Imagine that instead of the two days you’ve prepared for, you have no idea how long you’ll have to stay. Imagine that they put you in a side room and ignore you for eight hours at a time while you plod back and forth to NICU, where your baby is being fed through a tube in her nose.

Now imagine you get transferred to TCU after four days, and are handed your baby and expected to get on with it. They’re too busy to sit with you and show you how to breastfeed, so they give you advice and leave. Now that the baby’s not being fed through the nose, she’s desperately hungry, and won’t stop screaming and sucking on your breast even though there’s nothing in them.

Imagine she’s been feeding for five hours, and you’re weak, and sore, and tired, and you haven’t recovered from the blood loss, and you’re in a strange place with strange people and nobody is responding when you buzz. And then they tell your partner, the one who has been standing beside you all day, supporting you, giving you strength, that he has to leave and come back almost eleven hours later.

Now imagine that you have autism.

I think that warrants a little special dispensation.

People with autism don’t like change, and with a different midwife or nurse every few hours, and no consistency from one day to the next, hospitals aren’t designed to be easy for us. With the additional problems with communication, understanding and anxiety, people with Asperger’s Syndrome and other forms of autism really need someone to advocate for them in hospitals. Ideally, a family member or partner should be allowed to stay with them to act as go-between. Hell, I’d have slept in a chair – I even asked to – if it meant I could stay and support Lizzie. It would free up nurses and midwives, provide far better care for new mothers, and be less cruel on people who have just been through a traumatic experience.

But they don’t make exceptions for anyone, apparently.

Once we were eventually out of hospital, we had great support from the midwives and health visitors. Until, unfortunately, a few weeks ago it was decided that as our village sits on the border between Hampshire and Dorset, all the people formerly looked after by Dorset health visitors (like us) must be transferred over to Hampshire health visitors. So the Dorset health visitors have washed their hands of us, but Hampshire haven’t picked us up yet. After seeing the health visitor every week since the birth, we’ve not been seen now for a month. I spoke to Hampshire and they said they’d be happy to see us, two towns over, in a year. So I rang Dorset to say that doesn’t sound right and they told me to speak to Hampshire. Again, for people who don’t respond well to change, to have support and then take it away seems like calculated cruelty.

So all in all, there are great support services out there for expectant parents with autism, and some great support services for parents with autism, but don’t expect to get much support inside hospital, because it all ends at the door. Equally, the provision of services in the community is terribly inconsistent and seems to be dependent on postcode and not need. I guess it’s lucky we’re doing so well, and nowadays don’t really need that much support, but for people further down the autism spectrum, I dread to think what could happen.

Mother-Baby Groups

Lizzie is regularly taking Izzie to mother-baby groups, and for my sins I have accompanied her to a few. I have to say, hats off to her, because it allows the baby to socialise with other babies/become overstimulated/pick up and incubate enough germs to start her own chemical weapons factory. But this is a good thing, apparently.

I say hats off to Lizzie because if it were down to me, Izzie would never set foot in one – or bottom, as the case may be – since I’ve discovered that I cannot stand mother-baby groups.

I thought that I was into babies because I loved Izzie so much, but the truth is that I’m into my baby, not babies per se, so my tolerance for and liking of the screaming, crying, vomiting, farting, pooping, dribbly offspring of other people is not the same as my tolerance for and liking of the screaming, crying, vomiting, farting, pooping, dribbly issue of my own loins. And when there are ten of them crying all at once, it’s damn hard not to tap out and say, ‘That’s me done, my ears are bleeding and my blood-pressure’s so high I can feel my heart beating in my eye-sockets!’

But that’s not the only problem with them. As someone with Asperger’s Syndrome, I struggle with social situations at the best of times, but good golly gosh, mother-baby groups are hard work. They can be very cliquey, there’s a competition to see whose child is most advanced for their age, and everyone acts like the world’s greatest mother, making it really difficult to ask questions like, ‘How do I get her bogies out of her nose when her nostrils are so small?’ and, ‘Is it normal to have this dreadful fear of inadequacy and the constant spectre of your shortcomings as a parent?’ Because everyone seems to pretend they’re the living embodiment of Mother Nature, and we won’t condescend to talk to you because you’re clearly a beginner in this parenting game.

Being the only adult with a penis, you tend to stick out like a sore thumb too, and whenever I step into one of those groups, I feel my identity slowly sucked from my body and replaced with breastfuls of oestrogen. But that’s not my main issue with these groups, nor is it simply because they’re full of women – it’s because they’re full of mothers.

When you have a child, people stop seeing you as a person and start to see you as that thing that carries the cute baby around and takes it away again when it starts to cry or needs changing. ‘How’s the baby? Where’s the baby? Look at the baby! Ahhh.’ This transition from ‘individual’ to ‘baby’s plus-one’ can be particularly difficult and contribute to postnatal depression. When you’re coping with a momentous lifestyle change – marriage, divorce, coming out, changing career, abandoning the dye-job and letting it go grey – you need the support of the people around you who know you and see you as you to get through it. They remind you who you really are, what really matters, and smooth over the rough edges of your new identity.

But when you have a baby, everyone you know switches their attention to the little one, so not only has your life changed dramatically, your emotional support structure abandons you to focus in on the very thing that’s brought about the change. Frankly, it can be a bummer.

So, you go to mother-baby groups hoping to meet like-minded souls who know exactly what’s it’s like to be seen as nothing more than ‘mother’, people crying out for conversation about something other than nappies, and breastfeeding, and the day-to-day slog of childcare.

Then you get there.

Here’s a typical conversation at a mother-baby group:

‘Baby, baby, baby, I’m a mother, baby, baby.’

‘Ah, baby, baby, baby, I’m a mother too, baby, baby, baby.’

‘Breastfeeding, nappies, weaning, baby, baby, did you know I’m a mother, baby.’

‘Nappies, nappies, baby, I’m a mother, men just don’t understand.’

And so on, and so forth.

The only other topic of conversation is where they’ll meet up during the week to discuss being mothers some more. It’s like they’ve become Stepford Wives, or something – the thing that made them human has been sucked out and they’ve turned into boring child-rearing robots. For crying out loud, ladies, you’re people as well as mothers! You have other dimensions! There is a whole wide world out there filled with art, literature, politics, entertainment, sport, work, relationships, hope, dreams, joy, love – why on earth don’t you lift your eyes from your child for half a minute to see it?

Of course, I’m being facetious – I’m exaggerating. But it’s to prove a point. This morning I walked along the beach with the dog for ninety minutes. Every so often I’d pass a couple of women pushing their babies in prams, because it seems that young mothers love to go out in pairs, walk side-by-side, and completely block the promenade for everyone else. I understand it – nobody wants to stay in all day every day with their baby, and when the weather is nice, a walk along the beach in the sun with a friend is exactly what the doctor ordered.

But here’s the rub: as I passed these people – I must have met six such pairs today – I’d catch snippets of their conversations, and every single one of them was talking about babies and mothering.

The babies are asleep. You’re walking in the sunshine with your friend. The sea is lapping lazily against the shore. The air feels great in your lungs. It’s time to be you. And you’re still  talking about babies!?

That’s the thing I struggle with. I guess you’ll say, ‘It’s a mother-baby group, of course they’ll talk about babies and being mothers,’ and you’d have a point. You could also say, ‘But you’re talking about babies and parenting,’ and yes I am, but I’m not the walking embodiment of fatherhood and I never pretended to be – and it’s my blog, so nah, nee, nah, nee, nah, nah!

I’m sure people who enjoy mother-baby groups, and enjoy being earth mothers, will think I’m a silly man, so what do I know, and that’s fine. But we didn’t erase our identities the moment our children were born, and we don’t cease to be adults with adult needs just because we look after children all day. True, it informs a great deal of how we think about things – a couple of people I know died from carbon monoxide poisoning the other day, a mother and her son, and all I could think about was how awful it would be to lose Lizze and Izzie in like manner – but we are not one-dimensional characters just because we’re parents.

With Izzie on my lap I talk about the science behind the new Matt Damon movie, or the latest atrocity on the news, the etymology of the word ‘halcyon’ and how rough Kate Moss looks in her latest advert, if the new Facebook promo is really using the Pixies’ Where Is My Mind? on piano, or why the band PVRIS isn’t better known. If I one day found that all I could talk about was nappies, weaning, feeding, teething, and babies, babies, babies – well, that would be the day I realised I needed to find a new interest, and fast, before I ceased to be a human being and became a robo-nanny. Actually, come to think of it, that sounds rather fun…

It’s Harder On the Parents

Izzie has just spent her first night in her cot in her own room. Despite what I’ve said about accepting the passage of time, how it’s natural for a baby to move from one stage to another and instead of losing anything, you’re gaining a deeper understanding and a richer relationship, it’s still an incredibly bittersweet experience to see your daughter move on. Scratch that – it’s a painful, heart-rending, panic-inducing kick to the balls. And it hurts.

All week I’ve been putting off setting up the monitors, as though burying my head in the sand could somehow avert the inevitable. I secretly hoped they wouldn’t work, or I wouldn’t be able to figure out the instructions, or we’d have a power cut or no heating and she’d have to stay in the Moses Basket beside my bed, in my room, with me. Because for all my pontificating and philosophising, I’m just as emotionally insecure as the next parent, and I’m struggling to let go.

And that’s what parenting is all about. Our children do not belong to us – they belong to the Universe. And we are just borrowing them for a time. Each stage of their lives lasts just as long as it’s meant to, and no matter how much we might want to cling to a certain period because it makes us feel good, or important, or validated, we have to learn to let it go, release it emotionally, and move on to the next.

Easier said than done.

We put her in the cot in a grobag and she cried and cried. As we’re not advocates of the ‘cry-it-out’ method, I put my hand on her chest and rocked her gently from side to side until, after adding teething gel and a dummy, she suddenly went out like a light. So I removed the dummy and went next door and felt sick. My stomach tightened into knots, my arms tensed as though I was preparing to box, and my legs jiggled with nervous angst.

Ten minutes of sweating and writhing about in agitation, plagued by guilt, worry, my inability to accept change, and I could bear it no longer. I crept in there to find her still fast asleep, and in the same position I’d left her.

I spent the next hour staring at the monitor, watching the temperature gauge, waiting for it to burst into life – nothing. I woke every couple of hours feeling emotional and panicked. At four, I got up to check on her, and once again she was fast asleep, though in a slightly different position – about ninety-degrees away from straight. But she seemed okay, so I went back to bed, stared at the monitor for an hour, turned up the heating.

I got up at seven but she was still asleep, and it wasn’t until eight that she began to stir. After all my worrying, all of the stress and mental anguish, she slept right through from eleven at night till eight in the morning as though it was nothing.

Admittedly, she was facing the opposite direction to how we’d put her to bed – her feet to the headboard – but it just goes to show: this growing-up lark is far harder on the parents than on the children!