Friday, 28 April 2017

To the other mother...

…or father.  Despite the worrying trend towards casual sexism in politics and the media, I’m not joining in, honest.  It’s just that ‘parent’ doesn’t rhyme with ‘other’.  Non gender bias just isn’t as catchy.

Title vanity aside, this is a bit of an unexpected post.  Today is Undiagnosed Children’s Day - and this year, I have been fundamentally unprepared and well, a bit rubbish.  Why?  Well, the little man decided to go all 2013 retro and remind us what unstable looks like.  Basically, he pulled some pretty scary sh*t.  But following a big meds change, some side effects and a shed load of resilience from a determined five year old, all is fine. However, we are still catching up on the gazillion things we should have been getting done over the last few weeks.

So why the last minute post? Probably a rush of caffeine, a hint of reflection and a touch of FOMO.  See, this year, SWAN UK (Syndrome without a name) are aiming to reach the thousands of families out there living with the unknown, who don’t know that support is there.  Because there are lots.  Lots and lots in fact.

Other mothers. (yes, yes…I know).
Having done multiple hospital stays recently, I know, undiagnosed or not, how many families find themselves facing those unexpected stays.  I see them. I know they see me (not in a deeply profound sense…I mean they literally SEE me. I am right in their face to an irritating extent.  Complete with my non sleeping child and fundamental inability to put up a hospital folding bed quietly). But rarely do we speak.  Not properly.

That’s the rules of hospital.  We sit in our rows, perhaps exchanging a smile here or there, but full conversation is pretty rare…perhaps, inappropriate? I imagine it’s a bit like prison…hard to have a conversation without drifting into ‘so then, what you in for?

I, of course, assume no one knows why we are there. Knowing, of course, that the laws of physics say this is untrue.  Because, contrary to what doctors may believe – a flimsy blue curtain does not have awesome sound blocking properties.  Whilst I appreciate the sentiment of pulling the curtain before a tricky conversation, unless you are conducting it via interpretive dance or charades (FYI – way more interesting approach, which I am totally on board with), it’s not achieving much. 

And I don’t mind in the slightest.  But when the doctors leave, I don’t have lengthy conversations with others.  Over the years, I’ve briefly met or interacted with several parents of babies or children with long term conditions.  Often I wonder and feel I should be doing more.  Saying more. Because I remember.  I remember the stomach churning uncertainty of early hospital stays - trying not to run hypotheticals.  Waiting to see a doctor, any doctor who could help.

I want to reach out more…to be a little less British and a bit more brash.  Or perhaps both via a cup of tea?

I want to say ‘we’ve been there and everything turned out ok.’  To say what I was so desperate to hear from someone, anyone back then. To offer reassurance that it can be ok.  It is possible, and there is support out there.

Then I realise – what makes me think we are reassuring? What fundamental arrogance makes me think my version of ‘ok’ is in line with anyone elses? Perhaps I should be hushing my voice even more behind that curtain, in case those snippets cause alarm or concern….

‘Still undiagnosed….five years..’


‘daily neurological activity..’

‘profound and multiple learning difficulties…’

‘stopped breathing..’


Because I can’t find a way to weave in the other part of the reality. 

making amazing progress..’

‘so funny and affectionate..’


‘part of a community..’


That part of undiagnosed life is probably pretty invisible on hospital wards or in moments of crisis. That’s what I’d like to tell people. When I think back to myself in the early days.  Clutching a baby on a busy ward, imagining a different reality, what did I want to hear? What did that other mother need to hear?

I don’t know any more, my reality has changed so much that the edges have blurred.  I can't re-enter that completely different comprehension, or expectation. 
What I do know is that around 6000 children are born every year with a condition that will be undiagnosed.  I do know the difference that the right support can make.

So if you are out there. I hope today, the sea of pink Facebook profile pictures and blog posts reaches you.  I hope it makes a difference. And I promise not to be weird and brash on hospital wards (but I might bring tea). 


Sunday, 5 February 2017

But how do you know? Understanding my non verbal child's symptoms

How do you know? 

It’s a question I’ve been asked more than once.  It’s an answer I’ve tripped over, struggled to articulate.  One I’ve clumsily tried to explain, usually ending with a shrug and a resigned ‘I just do.’

It’s a valid question, usually from doctors.  It has an impossible answer.  How do I know when my non verbal, disabled child is in pain? How do I know he isn’t sad, or angry, or just….well, being five?

But I know.  I really know.  And I have a responsibility to get it right.

It’s a responsibility that haunts me, scares me.  Keeps me awake at night.  Because I know that the older he gets, the more important getting the answer right will be. That my child is no longer a baby.  That the day of angel faced cuteness are slipping away, giving way to a surprisingly robust, but endearingly fabulous little boy.   When he arches, kick and screams, the implications of wrongly classing pain as ‘behavioural’ will become more significant.  Getting it wrong is just too heartbreaking to even consider.  I need to be ready to explain.

And I have reason to worry about pain making an unwelcome appearance. Intermitted episodes of pain have been a recurring theme. They have peppered our little boy’s generally happy and cheerful existence with moments of darkness. As a baby, we knew.  He cried non-stop.  His little body would tense, his face would turn red.  The cry was different, panicked. But we were first time parents, caught in the non-specific catch all world of ‘colic’.  We hoped it would change over time.  Hoped it was something simple that would ease the older he got.

It didn’t.  It became significantly worse, at six months old turning to full body, painful dystonic spasms.  His arms would twist, contort and lock.  His body would shake.  We would watch, helpless.  Google, fearful.  With the help of an amazing neurologist, we finally gained control. But at night, the pain still lingered.

In the early hours of the morning, without fail, he would cry.  Really, really cry. For hours and hours. His stomach would tense, the panicked, gasping wail would return.  Then came the behaviours.  He could only calm when clawing at my hair.  Then his own. He would kick, grab. We stood firm that pain was the problem.  We ignored suggestions that his sleep would be improved by letting him ‘cry it out’. 

But I admit, I started to wonder.  We could be wrong.  His development had halted, with emerging sensory processing issues. What if these were actually ‘behaviours?’  What if I didn’t understand my own child? Then at 2 and a half, everything changed.  A doctor intervened with a ‘worth a try’ medication to control gastric spasms. The crying stopped. The behaviours stopped.

I can’t overstate the impact of that change. On every single aspect of our lives.  We owe a huge debt of gratitude to the doctors involved.  For listening, supporting and not giving up.

But now, when I meet someone new.  How do I explain?  How can I be clear that whilst, yes, we have control, there are occasional moments when those days start to creep back.  That, yes it may just be an ‘episode’ of pain every few days, but that we need to recognise it for what it is and pre-empt it. Because we can’t go back there.  We just can’t. We won’t.

I am also coming at this from a fairly simple position. I don’t have that much to unpick.  My son doesn’t have significant behavioural issues.  He just isn’t there yet.  He hasn’t hit that developmental stage.  He doesn’t know how to throw a tantrum over the wrong shape of pasta, or because the rain isn’t wet enough.  Bar a minor grumble and unintentionally cute ‘sad face’, he doesn’t object to stopping an activity or letting go of a toy. In fact, having recently learned to pass objects, he is an obsessive sharer.  He’ll give you everything he has and throw you a smile and clap at the process. 

I know there will be families out there coming from a more complex standpoint.  Having to explain the difference between behavioural distress and painful symptoms.  I am also not na├»ve to reality. This may well be us in the future.  My son has a undiagnosed genetic condition and an unknown prognosis, but thanks to the right medications and interventions, he is making forward progress.  Objection is part of learning.  Part of developing a sense of self. He will find his own ways to communicate his displeasure.  One day the rain simply won’t be wet enough – and I’ll need to recognise it for what it is.

But to those asking the question, be it doctors, other professionals. I would ask just one thing – use me as to your advantage.  Feel free to ask the questions.  Because parents of  complex,non-verbal children are your greatest ally. We are translators. We have more experience in this role than in anything else we have ever done.  We have completed lengthy emersion training, with some particularly challenging advanced night time modules.

I used to bristle when I was asked ‘How do you know?’, or when it was implied.  Because of course I think ‘I know’.  But I have now come to realise there is something much worse – not being asked. Not having that conversation, or working together to understand the child at the heart of it.

The single greatest thing any doctor or professional can do for us is to ask the right questions and listen to the answers. To treat us as partners in this journey.  To ask for our interpretations and translations; because learning to communicate with this funny, endearing, loving little boy is both my greatest challenge and most enriching achievement.  We don’t have words, or signs. We have nuances, expressions and subtleties that are crystal clear to those in the know.  I’m still working, but like most parents of disabled children, I’m learning more every day.