Saturday, 16 March 2013

What to Expect: Your First Special Year

Back when life seemed to follow a clear path, before Little J’s symptoms were apparent, I would often read up about what we could ‘expect’ from his babyhood.  I was excited to know when he would crawl, when we would hear his first words.  Like many new parents, I had the ‘What to Expect: Your First Year’ book.  I would read the relevant month, smile in recognition of the skills he had gained and sometimes flick ahead to see what excitement was in store.  Then, when he was seven months old, we began the five week hospital stay that changed everything.  When we left it was clear that something was very wrong.  All of a sudden his development seemed to just freeze.  We were no longer moving chapters.

All baby books were relegated straight to the bookcase.  All ‘developmental’ e-mails sent as marketing ploys for various retailers were deleted immediately (these remain pretty irritating.  Nothing like a ‘do you know what your toddler will be doing this month?’ e-mail to bring you down.  Yeah I can pretty much guess, but I bet you don’t.)  Then this week, I found myself doing something.  I found myself reaching for the ‘What to Expect’ book.  Not because I was worried.  Not because I was wondering if there was any chance of ‘catching up’.  I picked it up because I was interested.  It had been a while since our last developmental review by a paediatrician and I was intrigued to see where the book would place Little J. 
I then realised the monumental change that has happened to me.  It has been almost exactly one year since we left hospital.  One year since we were stunned by the realisation that our child had an unknown, life changing condition.  In that year I have moved further and further to a point of acceptance.  I don’t think about ‘milestones’ and pray that little J will suddenly meet them.  I accept that we are now past that point.  But getting to this (often unsteady) point of acceptance has been tough.  I wish there had been a relevant guide.  A book to tell me that one way or another, we would get through this.  Something to explain what medical acronyms mean, how to re-set a SATs monitor in hospital when your child takes it off (there are only so many times you can call the nurse) and how to fight the system when you need to.  But no such book exists.
If there was. If I could send something back to myself, I wondered what it would say….

What to Expect: Your First Special Year
1)  You are currently in denial, maybe even a little shock.  You think you aren’t, but really you are.  You know that whole not wanting to talk about it, wanting to move to the middle of nowhere and cling onto your child away from the rest of the world thing.  Yeah that. 

It will pass in time.  In time you will be able to talk about your situation with ease, even to strangers.  You may even go as far as posting your experiences on the internet for all to see.  I know, crazy thought. 

2)     You will lose all sense of shame.  Whatever it takes to make your child’s life that little bit better, to raise a smile after yet another invasive medical test, or to distract them from pain – you will do it.  You will think nothing of dancing down supermarket aisles.  You will not care about the group of schoolchildren behind you at the bus stop as you sing ‘what a good baby’ to the tune of Lady Gaga’s ‘Bad Romance.’  With jazz hands.

3)      You no longer live in an area.  You may think that you do.  But I am afraid that you don’t.  Where you live is no longer defined by how nice the park round the corner is, or the lovely high street a short drive away.  You now live in a borough.  Well, you always did, but your local authority never mattered quite like it does now.  You know that fabulous private nursery and great GP surgery a few streets away, but in a neighbouring borough?  I am afraid you need to look away and forget about those.  You now have a child with additional needs.  That requires funding.  Unless you are up for a fight, other boroughs will not be too keen on providing that.

Oh, and which borough you live in matters.  It matters a lot.  If yours is feeling stingy, I’m afraid you may have to move.  But that’s more of a question for your second special year.

4)     You will have an affair with Mr Google.  Everyone will tell you that he is no good for you.  He just upsets you.  You will resolve to stay away.  But then you will have something new to ask him and you won’t be able to resist.  Only this time you will keep the heart-breaking possibilities he tells you to yourself.  You will resolve to stay away again. I’m afraid this cycle will repeat itself.

5)     Life will start to resemble Groundhog Day.  At first, this will be painful.  You will see your friends’ new babies surpass your child developmentally in a matter of months. Then you will come to accept.  You will appreciate the value of moments and understand that these are what differentiate your days.  You will stop obsessing about first steps or first words and relish the first smile of the morning and the first laugh of the day.

6)     You will become complacent (see point 5).  You will stop worrying about baby proofing or play pens.  Your child will then seem to wait for you to leave the room before miraculously developing the ability to roll across your entire living room and vanish under the sofa, where they will of course lie silently whilst you panic.
7)     You will be returning to the 1980s.  Not the perms and shoulder pads (that’s really your choice).  No, this thirty year throwback will come in the form of one of the most irritating bits of technology in existence.  The fax machine.  Yep.  You know that thing in the corner of the office that no one knows how to use anymore?  It will become the bane of your life.

In the NHS, everything is sent by letter.  If something needs to be done ‘quickly’ it is sent by fax.  You will constantly be waiting for someone to fax something.  For a hospital to fax another one.  For a paediatrician to fax your GP about a much needed prescription.  These faxes will often not arrive and you will spend a lot of time in your GP’s reception shouting, ‘press send now!’ down the phone.  You will try and convince people to use a more effective method of communication (e-mail, carrier pigeon?) but they will be deemed unsafe for confidential medical information.  No one, however, will bat an eyelid when your child’s confidential information is faxed to the wrong number.  Again.

8)      You will notice things that you never saw before.  You will notice the inaccessibility of certain shops and restaurants for anyone other than the able bodied.  You will recognise certain buggies - Those that are a hybrid between a pushchair and a wheelchair.  You will wonder how you never noticed before.  You will notice the added note of panic in the face of the mother trying to calm her spinning five year old in the middle of a coffee shop. You will hear her calm tone and use of language, and you will know. 

You will exchange a smile.  And then you will both know.

9)     You will make new friends.   You will seek them out gradually.  Some you will find virtually, some you will meet face to face.  Your stories will be similar, though you may not always have much else in common.  You will form a diverse, complex and even powerful group.  Eventually, you will come to realise - you are part of a community.

10)   You may experience the prejudice of strangers.

11)   You will experience the kindness of strangers.

12)   You will change. 

You will leave this year a different person to the one who entered it.  You will experience a level of love that you did not think possible.  You will no longer care about things that used to seem important.  You will emerge more patient, stronger and more determined.  You may emmerge a little battle-scarred.  But you will emerge different. 

And it will be for the better.
This post is part of the Undiagnosed Children's Day blog hop.  To return to the blog hop, click here.

Monday, 4 March 2013

Sleep: Giving up or Letting go?


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. 
We do.
And when that fails.  I remind myself that not many people have a bumper pack of coffee the size of the one we do.