Sleep and young children do not go together. Every stereotype of the frazzled, muslin-shouldered new parent tells me this. It turns out this is because being a baby is actually pretty tough. There are lots of reasons not to sleep and we have declared them all the source of our night time problems - ‘it’s just a growth spurt’, ‘he’s teething’, ‘It must be a new developmental stage’. If all of this were true, Little J would currently be six foot tall with an Esther Rantzen smile and an IQ to rival Einstein. I fear that for us, there is something else going on.
We have since learned that children with neurological conditions often struggle with sleep. Then if you factor in Little J’s muscle spasms, we are, to be polite, nocturnally challenged. To be honest – totally screwed. So far nothing has worked. Even a melatonin prescription hefty enough to relax a horse has had little impact. So we have to adjust, accept and construct our lives around this.
I can now see that this is the logical way to respond. However, when Little J was younger this wasn’t so easy. This is because as a parent to a young baby – achieving sleep is an obsession. Listening to new parents at a baby group discussing sleep is like listening to teenage boys talking about sex. Everyone wants to talk about it, far fewer are getting it than claim to be and those who are seem desperate to share every intimate detail of how they got there.
There are even bestselling books about sleep techniques and how to ‘teach’ your baby to settle. They all share one clear message. If your baby can’t sleep, it is YOUR fault. Foolishly, I succumbed to the hype and spent over a year attempting all sleep techniques apart from controlled crying. Despite my feeling that Little J’s sleep problems were deeper routed; Gina Ford and her pals set up camp in my brain and convinced me that I MUST take assertive action.
It wasn’t an immediate belief. In the early days I was convinced that there was something wrong. When Little J was born I was ready for some serious night time pacing and rocking, but nothing could have prepared me for what actually happened. You see he didn’t just cry. He wailed. A deep routed, panicked scream that would rise to a crescendo again and again. As a newborn he was sleeping as little as 4 hours in 24 and screaming 12 hours straight.
Retrospectively, I suspect this was linked to his movement disorder. His stomach would tense as if spasming, his arms and legs would flail out of control and he would often turn red or sweat from holding his breath during the pain. Medically, he was classed under that good old catch all term – colic. It was only then I came to understand that nobody has the faintest idea what colic is…it is ‘screamy newborn syndrome’. There is no treatment , you just have to ride it out. Thankfully, at 5 weeks old our GP offered us medication for acid reflux and the consistency of the screaming calmed. However, no matter what reflux meds he was on, Little J never fully settled. Arms and legs would start to flail in panic after just a few minutes in his cot and we would still spend hours on end trying to calm him. We were exhausted and emotionally drained; convinced our little baby in pain.
To make things worse, from the age of three weeks old, my husband was working away three days a week. I had never really had a chance to catch up on sleep and I was still recovering from an emergency C-section. Finally, when Little J was seven weeks old, I had a complete ‘I can’t go on’ moment. I rang my husband and told him what we needed to do. I didn’t care if it obliterated our savings and we never moved out of our rented flat – we needed to invest in a night nanny. I could almost feel his eyebrows raise at the word ‘invest’. But this was an investment. In my mental health. I was a few sleepless nights short of dancing down the street in my pyjamas singing show tunes.
A few applicants were interested in the job. It was only one night a week for a few weeks. But, it seemed this was quite appealing to nannies looking for a bit of quick, easy (ha!) cash. One candidate stood out immediately. She was, quite frankly, amazing. She was a sleep trainer. A proper sleep trainer! She had a website! She was going to be like Supernanny meets Mary Poppins!
Then she came round for an interview. The experience wasn’t quite the ‘spoonful of sugar’ I was expecting. Purely for the purpose of identifying who’s who in this post, let’s call her Cruella. Cruella was not impressed by us at all. We didn’t so much interview her as she berated us. Why was Little J still up at 8pm? What did we mean he didn’t sleep? Well what was a night nanny meant to do? It would seem that Cruella was under the mistaken impression that we simply didn’t want to do night feeds and would prefer to pay someone for the pleasure. I think about two steps into our ‘cosy’ flat, this assumption was shattered. Then she began to tell us her views on reflux. She didn’t believe in reflux. ‘No one had reflux in the seventies,’ ‘Babies are born with certain personalities’, ‘It is just up to parents to manage them.’
I was beginning to feel a rising panic. I had managed to get Little J down in a Moses basket behind her and after only ten minutes I could see his legs popping up rhythmically over her shoulder. Perhaps she was right. Maybe this was all our fault. Had we systematically screwed up our baby in just seven weeks? Or maybe she was right about personality – he was just that grumpy. Could it be? Had I unleashed a tap dancing Victor Meldrew on the world - Sent here to torture us and all in an audible radius?
Thankfully, our instincts kicked in and we didn’t hire Cruella. Luckily we found a lovely night nanny who was a godsend for the few nights we had her. Whilst I remained convinced that Little J was in pain, the maggots of doubt had wormed their way into my mind. When you are sleep deprived, paranoia sets in easily – and I was at the car-keys- in-the-fridge sharp end of tiredness. For a long time we tried different sleep techniques. Little J would go to bed beautifully (take THAT Cruella), but from 1am onwards, he just couldn’t sleep. We did the ‘pick up put down’ technique, we never let him fall asleep in our arms and we even resorted to rocking him through the night in his pushchair rather than let him co-sleep. I am eternally grateful that we never went as far as controlled crying. It breaks my heart to think of the pain he has gone through in his life. I take comfort that one of us has always been there with him in the worst moments.
Even after a neurologist recognised Little J’s painful dystonia at eight months old, we still tried to maintain this night time routine. Then, a few months ago we made a liberating decision. We adopted the ‘do whatever it takes to get some bloody sleep technique’. The dummy that we weaned at six months is firmly back at night time. From 1am, Little J comes into bed with us. He writhes around, comforts himself by hugging us and indulges his need for sensory feedback through an activity I can only describe as ‘nest building’ (pulling on, twisting and occasionally chewing my hair). Are we making a mistake? Possibly. Are we happier? Definitely.
When you have a child with an undiagnosed condition, no one can tell you what to expect, or why your child does what they do. This means there are no proven rights or wrongs. I find it frightening to think how easily seduced I was by the belief that Little J’s sleep issues were our fault and that we needed to ‘fix’ him. (I should add here that I am in no way advocating co-sleeping - I would much rather avoid it if I could and we are very careful about safety issues). I have been told several times that I should just ‘let him cry’. I appreciate that there will be parents out there who need these techniques and I am sure they work for them. But sometimes, just sometimes there is a child in genuine pain.
Our new arrangement has made things easier, but our nights are still tough. However, I now have a new sense of perspective. When the doctors decided to test Little J for progressive conditions, I chose to see our nights differently. This is because I am really very lucky. I get bonus time. Extra time that I would normally not be entitled to. Extra cuddles, extra kisses, extra chances to feel his weight in my arms and appreciate the fleeting nature of these ‘baby’ years. It’s not just any time – it’s magical time. There are no errands to run, no appointments to be done, no physio to worry about. It’s just us.
When we are having a bad night and I am walking around with him, feeling his head heavy on my shoulder, hearing him breathe softly; I try to look out of the window and appreciate the magic of this moonlit time when everyone else is asleep. I remind myself that not many people have this.
Not many people feel the warmth of a hug in the early hours or get to see the stars at four am. Not many people know about the black and white cat who rules our street by night, or feel the stillness of utter silence.
And when that fails. I remind myself that not many people have a bumper pack of coffee the size of the one we do.