A night with a couple of hours of broken sleep is normal when you’re a parent, and while unpleasant, more than bearable.
What’s slightly harder is when that night of broken sleep is followed by a day of doctors and hospitals, a night with no sleep, a day helping prepare for the wedding, another night of no sleep, and another day preparing for the wedding, and then a wedding rehearsal.
This evening, after bathing the baby at Lizzie’s dad’s farm, I had to get someone to take the baby off me before I collapsed. Possibly because, looking after Izzie around the clock for four days, trying to get her to eat, keep her fluids up and soothe her, I was not only in desperate need of sleep, I had neglected eating or drinking myself.
Lizzie, of course, has been understandably preoccupied with arrangements for Saturday, leaving the brunt to unfortunately fall upon me. Izzie is very grizzly, has a fluctuating temperature, and chronic diarrhoea – all a result of her gastroenteritis. Worse, since Wednesday’s stint in the Children’s Unit, she has developed a phobia of syringes. Every dose of Calpol or Ibuprofen or gripe water is met with stubborn resistance and followed by two hours of misery.
As a result of the experience of hospitals, she has become remarkably clingy. I have never been hugged so hard. If I so much as lean forward an inch, this vice-like grip tightens around my shoulders and she starts to scream.
So she will only sleep on me.
That’s great if you’re able to sleep with a baby snoring on your chest. If you can’t, after a few days it seems to result in a spinning head, pink eyes, trembling hands, a stiff neck, an aching back, a sore chest, intermittent breathlessness, and a face that twitches as though attached to a whole mesh of electrical wire. All I need now is a rash that doesn’t disappear when a glass is pressed over it, and I’ll be really worried!
Tonight, for the second night in a year, I am sans baby. The night before my wedding. I was always meant to spend it alone, but after my near-fainting episode, they sent me home early. And instead of luxuriating in my aloneness or living it up, or at the very least working on my speech, I can’t open my left eye, my head feels like someone is sawing through it with a spoon, and no matter how hard I try, I’m too tired to fall asleep!
In all honesty, I’m a tad worried about my little one. But there are fifteen people there, including her mum, aunt, great-aunt, grandmother and grandfather. It’s an important lesson to learn: I’m not invincible and I can’t do it all alone, despite how much I think I can. I guess that’s what marriage is all about.
And on that note, I’d better at least try to get some sleep, or they’ll have to Photoshop my eyes open in the pictures!
They say that life is what happens while you’re making other plans, and they’re definitely not wrong. I had this week planned out in fine detail. I have to: I’m getting married on Saturday. So there is an awful lot to do and I couldn’t afford any hiccups.
You can guess where this is going.
When you’re a dad, hiccups go with the territory. I expected a few things to crop up. I hadn’t imagined that life, death, birth, suicide and viral gastroenteritis would feature quite so prominently, however.
It started Monday. I was already up against it as I had my stag-do that night, when, driving home along a country lane, I saw a ball of white fluff wandering down the middle of the road. Since it’s a busy road and people drive like maniacs, I stopped to move it out of traffic, when I realised it was something I really couldn’t leave to get run over.
There were no trees about – just bushes – and those on the other side of a ditch, and if I left it in a random hedge there was no way it’d survive. Now I know you’re supposed to leave balls of fluff alone, but these were extenuating circumstances. So I did what I thought was best – I picked it up and I put it in my car.
I had no clue what it was, but given it had a hooked beak and long, sharp talons, I had a fairly good guess.
Since the last bird of prey I tried to rescue didn’t make it, I was determined that this one would. Luckily a few miles down the road is an owl, raptor and reptile sanctuary, so I took it there. Turns out it was a barn owl chick, far too young to be out of the nest. They’re going to get him well and then find a nest with similar aged chicks and slip him in, to be raised by a surrogate mother back in the wild.
My good deed for Monday was done – but it ate up a massive chunk of the day.
On Tuesday, I did a few wedding-related things like writing my groom’s speech, but I have to confess to being distracted all day by the wrens nesting two feet outside the back door. Every three or four minutes they return to the box with an insect, whereuopon three very hungry chicks lean chirping out of the hole. I guess I don’t have to watch them, but it’s hard not to when they’re so busy from sun up – around half-four in the morning – right the way through to after sunset – gone nine-thirty at night.
Part of the reason I couldn’t look away was this whole parenting thing. I couldn’t help feeling a kinship with these tiny little birds looking after their kids, sacrificing their time and energy to care for their young ones around the clock. I admired them their energy, and felt it needed to be acknowledged, if only through my observation. And if I’m honest, I wondered if I’d be able to cope if I had to expend so much effort on my child as they did on theirs.
The answer wasn’t long in coming.
I put the baby to bed as usual around seven Tuesday night. At ten came the most horrible sound, and when I rushed in there I found little Izzie soaked in vomit. I picked her up and, my god, she was burning up! With a temperature of 38.6, I gave her some Calpol, two hours of TLC, got her to bed shortly after midnight, and checked on her every two hours.
By six o’clock this morning she was 39.1 degrees and very unhappy. It’s awful, knowing she’s unwell but unable to do much about it. So many thoughts and possibilities run through your mind, and after so few hours sleep, you jump to worst case scenarios.
I spoke to a doctor at 8.30, saw her at 11, when Izzie was 39.3, and was sent straight to the hospital so she could be assessed. And that was just the start of six hours of shenanigans.
Izzie was the most distressed I’ve ever seen her, and Lizzie almost as bad. As the stable presence in their lives, I have to take it in my stride, act confident and calm, reassure them that everything’s okay and we’ll deal with whatever happens, even though inside I’m just as churned up. Watching Izzie get poked and prodded and howl like a banshee must rank up there as one of the least comfortable experiences of my life.
Well, worse was to come. They needed a urine sample to test, and despite this being 2016, guess how you get a urine sample from a baby? You sit the over-hot, kicking, squirming, screaming sweetie on your partner’s lap on a waterproof sheet, crouch between their legs with a plastic tub, and get ready to catch whatever comes out.
I always figured that since they’re incontinent, babies drip-drip-dripped, little and often. Nope. They pee just like normal people – when they need to.
So we waited.
For an hour and three-quarters. Crouched, ready to jump into action in a split second to catch that pee! And true to form, Izzie waited for the doctor to arrive and the precise moment I looked away to make her entrance to the stage. In the event, I got it all over my hands, but managed to salvage enough to test.
Meanwhile, doctors and nurses and mothers and boyfriends came to visit the girl in the bed next to us, a teenager who took an overdose this morning, and, by dint of still being classed as a child, was placed in a bay surrounded by screaming babies.
It’s impossible not to overhear things in a hospital – the curtains aren’t exactly soundproof, after all.
‘Did you intend to kill yourself?’
‘Are you happy you’re still here?’
She gave her mother a pretty hard time, lots of effing and blinding. And as a dad, I thought how odd it was that fourteen years earlier, she’d have been like Izzie, a little girl, an innocent, unsullied, perfect creature. I can’t comprehend how I would feel if in fourteen years time it’s Izzie in that bed following a suicide attempt, telling me to ‘shut up, I just don’t care, leave me alone, I don’t give a f**k.’
The stark contrast really struck me, two girls in two beds, separated by nothing more than a curtain and a few years; one so simple and dependent and full of the joys of spring, the other so complex and cynical and utterly jaded. And I want to cling to Izzie and stop her growing up, retain her innocence at any cost, arrest the passage of time.
But I can’t.
In one bed, we’re planning our futures together; in the other, she could have been dead. She might still be – it was paracetamol and they were waiting to see how much damage she’d done to her organs.
The thing is, in my life I’ve been suicidal. I’ve self-harmed. I’ve always been a little bit crazy. My teens are a blur of high emotions and antidepressants, hidden knives and hidden scars. I’m not always rational. People tell me I’ve said things, done things, and I have no recollection whatsoever. At times of high stress I become paranoid that people can hear my thoughts. I am the girl in the bed beyond the curtain – at least, I was. But I got through it. Saved, as it were, by the love of my family, a stubborn unwillingness to give in, and by the miracle that is my daughter.
I don’t ever want her to grow up like me. Stay this side of the curtain, sweetheart.
Long story short, after I wiped the piss off my hands, we discovered she didn’t have a UTI, and they diagnosed it as viral gastroenteritis. Eventually we were allowed to go home, after eight hours away.
Things have calmed a little this evening – Lizzie and Izzie are both snoring, but the latter wakes up every ten minutes, has a little cry, and drops back off. I’m monitoring temperatures, wiping up diarrhoea, and preparing for another night of broken sleep. In the test of whether I’m as good a parent as a wren, I think I’ve passed.
All day I’ve acted tough. Now the world has gone to sleep I can be honest. I feel tearful. Seeing Izzie going through all that, not knowing what was wrong – I was more scared than anyone can imagine. Because Izzie is my world.
So much has happened this week and it’s only Wednesday! If tomorrow is anything like today, I don’t know what I’ll do. Did I mention I’m getting married in three days?
[EDIT: I have just discovered from the Barn Owl Trust that I did exactly the right thing. It says finding barn owl chicks out of the nest before they can fly is not normal, they are only fed in the nest and parents will ignore one on the ground and leave it to starve to death, they have very little sense of smell and will not reject it if you handle it, and leaving it well alone is usually not the appropriate course of action. On the other hand, if it was a tawny owl chick, you should leave it as it is normal for chicks to be out of the nest before they can fly and parents will feed them anywhere – even on the ground. Barn owl chick = intervene. Tawny owl chick = leave alone. Yay me.]
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.
I sometimes wonder how people survived in the past without the modern medical industry and its intrusion into every stage of life. How did they manage without someone measuring weight, length, head circumference, and comparing it to a chart to make sure their babies were developing properly (50th, 75th and 75th percentiles respectively, in case you were wondering – tall, thin and big-brained, just like all the best supermodels)?
And developmental stages: at the eight week check (well, nine, because our appointments were late coming through) the doctor told us Izzie should be smiling, cooing and following things with her eyes by now, as well as beginning to support her head, albeit unsteadily, and drawing up her knees and splaying her feet when placed on her tummy in preparation for crawling. Luckily she can do all those things, but what if she couldn’t? Would we worry about her health, or would we simply wait until she did them naturally at her own pace in her own time? I think we all know the answer to that.
In the past, they simply got on with things, and I don’t think it was necessarily a bad way to do it. Do we really need all of this data when humans have been raising children for hundreds of thousands of years? It’s like when grandparents visit and make little pointers on how to do things. I was feeding Izzie the other day when my mother said, ‘Make sure her nose is clear so she can breathe.’ Gee, thanks mum. I’ve only been doing this at least six times a day for nine weeks: how did I ever cope without you here?
Of course, modern medicine is great when things do go wrong, but given that we, as new parents, know so much, and so little, about the health of infants, we err on the side of caution and rush our kids to the doctor when a wait-and-see approach might have been more reasonable. So in the past week, Izzie has been prodded and poked, measured, evaluated, stuck with needles, dazzled, pulled and manipulated during two trips to the hospital, an examination from the Health Visitor, and an outing to the doctor’s.
Nine o’clock on Friday evening I discovered a watery lump on the back of Izzie’s scalp and was worried her squishy head had returned. Wait till Monday and see if it resolves in the meantime? Not a chance. What if it’s an infection? What if it’s a fractured skull? What if she’s going to die?
The doctor felt it, looked at me and said, ‘That’s her skin.’
‘But, like, when she was born she had this swollen squishy head thing, and it felt just like that.’
‘Uh-huh,’ he said, nodding. ‘It’s still just skin.’
Of some consolation was the fact that the waiting room for the out-of-hours GP at the hospital was packed with worried parents clutching babies and toddlers. The old maxim that you wrap your first child in cotton wool while you let the second juggle knives seems to be true: they were all only children (only childs?). A bump on the head, a sniffle, a funny-sounding cough – how did they used to manage without emergency rooms?
We have an ultrasound for Izzie today. Lizzie had hip dysplasia as a child, otherwise known as clicky hip, and so they wanted to screen Izzie against it. She had no problems when examined in NICU, no problems when examined at her eight week check, but to be on the safe side we need to look at the insides of her joints. Pain free but awkward.
When she grows up, Izzie will be amazed to discover that not only have we seen every square inch of her outsides, we’ve seen her hip joints, the four chambers of her heart, her brain and nasal cavity, stomach, kidneys, lungs, liver, bowels and bladder too. Nothing is private anymore.
I guess that’s the price we pay for modern medicine.