Thursday, 24 April 2014

The Wonder of Hugh

When no-one else can understand me ...

A medical mystery
A curious conundrum

He’s not straight-forward our little Hugh. Or to steal a phrase from a lovely friend he’s ‘Hughnique’

I’ve written before about how I struggled to accept Hugh’s lack of diagnosis at first and how I eventually began to reach a point of acceptance. (If you want to read them you’ll find them here and here)  There are days I still long for a diagnosis – when he’s ill and can’t tell me what’s wrong, when I think about the future too much – but mostly I just sit back and take it day by day. 

He is who he is. 
He’s my wonderfully smiley, cheeky and happy, lovely little Hughie.

Friday 25th April is Undiagnosed Children’s Awareness Day – a day for those who don’t fit neatly in any diagnostic boxes to stand up and be counted.  There are lots of events around the country, a fabulous video – you can see it here, a twitter campaign: #itsamystery and a great blog hop where anyone (not just SWAN families) can share their experiences of, or show support for, being undiagnosed.

This is my entry- short and sweet this year (unusual for me). 

So I’ll leave you with some (slightly tweaked) words from The King himself.  Feel free to sing along.

And when you smile the world is brighter,
You touch my hand and I’m a king,
Your kiss to me is worth a fortune,
Your love for me is everything.
I guess I’ll never know the reason why,
You love me like you do,
That’s the wonder,
The wonder of Hugh.

Wednesday, 19 March 2014

Turning Four and Starting School

This time four years ago I was gearing up for Hugh's imminent arrival. The benefit of being induced early (due to gestational diabetes) is that you can plan and prepare in advance. Admittedly I didn't expect Hugh to take three long days to finally show himself, but I'd organised childcare for Sean while I was in hospital and expected the whole process to go relatively smoothly. Hugh though, as I've since learnt, doesn't do anything the way it's expected, so after a short, but scary, stint in intensive care, then the high dependency unit and then the special care unit, he came home to meet his big brother.

Like most people, I didn't commit when asked 'are you hoping for a boy or a girl?', "so long as its healthy, I don't mind", I'd reply. But if pushed, I'd usually confess that since the two would be just 14 months apart, then another boy would be nice. I imagined two brothers, so close in age, chasing each other, playing football together and fighting. I pictured myself separating wrestling toddlers and settling disputes over cars. I imagined a house of noise and chaos during the day and of best friends in bunk beds, giggling and conspiring in the darkness at night.

Birthdays, like many annual events, seem to encourage you to look back and reflect.  I've approached Hugh's birthdays with a mixture of feelings over the years; always thankful and relieved to have reached another milestone, but also acutely aware of the ever widening gap between him and his peers. 

Since September, Hugh's fourth birthday has been a shadow lurking in my mind. The first sinking feeling came with the arrival of the school selection forms. I'd received them the previous September for Sean and filled in my school preference online, excitedly sharing the process with Sean. Hugh's forms lay ignored for months, until I finally threw them in the bin. 

I remember clearly the time I was told Hugh would need to go to a special school. He was only about a year old then. I was devastated- I'd really hoped he'd catch up enough to go to school with support. I have nothing against special schools, I think they are the right environment for many children, but I doubt anyone ever hopes for that for their child. I am delighted with Hugh's school (he's started in the nursery part time) and I know it is the best place for him, but with his fourth birthday approaching, I can't help but imagine what might have been.

Hugh's not a baby or a toddler any more. He's a four year old, preparing to go to school in September. But Hugh's not running around the playground while he waits to pick his brother up, he's not impatient to start 'big school' like Sean. It's not him being chased by his brother and his mates in the morning. They won't be discussing teachers or school dinners or playing together at lunch. Hugh won't follow Sean around the playground, delighted to be friends with the big boys. Sean's outgrown school uniforms won't have a change of name-label this summer and a quick shift to Hugh's wardrobe. 

This time last year, I took Sean to celebrate mass with the then-Reception class. He watched in wonder as the older children said their prayers and I told him that in a few short months he'd be just like them. He couldn't wait to start and was delighted with his little picture of St. Joseph, the patron saint of the class, that he was given at the end of mass. Today Hugh and I watched Sean reading in his class mass. They gave out little pictures of St. Joseph to all the children due to start reception in September, just as they had the year before. These would have been Hugh's class mates. Some of them might have been his best friends. 

But, at the end of mass, instead of waiting to chat to the other parents and meet the children he'd be starting school with, I took Hugh, and his little picture of St Joseph, to the special school around the corner.

Monday, 10 March 2014

Those who can, do ...

My name’s Emma and I’m a teacher.
photo credit

There, I said it, like a confession at a meeting for alcoholics anonymous. 

Except it’s not true, not really, not any more.  You see, I was a teacher, long ago before Hugh and his medical complexities came into my life.  I like to think I was a good teacher.  I enjoyed it.  I worked hard.  And yes, I had 13 weeks holiday a year!

Being a teacher defined me somewhat.  I was proud of my profession and what it said about me.  (That was before Mr. Gove went on his teacher-bashing campaign of hate).  I taught at a mainstream primary initially, and then went on to teach children with autism in a special school.  I did a degree at university, a PGCE and even started a Masters in Special Education all to be able to teach and further my career.

My name is Emma.  I haven’t taught in four years.

I returned to work briefly between having the boys (there’s only 14 months between them) and my intention was to return to work part time after having Hugh.  I expected he’d attend the same nursery as Sean.  Some six months after having him, I had to reconsider – I didn’t think he’d cope in nursery, so mum and I planned that she’d also work part time and have Hugh on the days I worked. Not returning to work wasn’t an option financially.  I knew I’d miss the boys while I was at work and at times dreaded the thought of going back and leaving them, but I enjoyed teaching and part time hours was a great compromise. 

Hugh developed seizures just as I was due to return to work.  School were great and I extended my maternity leave for a further three months.  Week after week was spent back and forth to the hospital for either routine appointments or desperate emergencies.  We began getting recognised by the paramedic crew he was spending that much time in ambulances.

I vividly remember sitting by Hugh’s hospital bed after another late night blue-lighted trip to A&E and asking how I could return to work to look after other people’s children, when my own needed me so badly?  How could I concentrate on doing a day’s work if Hugh was fighting for his life in hospital?  But how on earth could we afford to live if I didn’t work?

I postponed returning to work for a further six months – again, the school were brilliant and understanding – yet as the six months drew to a close it became increasingly apparent that Hugh was a very poorly little boy.  I officially handed my resignation in when Hugh was 14 months old, around the same time we were told to prepare for his end of life.

Hugh, thankfully, has proved to be a fighter and is fast approaching his fourth birthday, stronger, healthier than we could ever have predicted.  His needs are still complex and the risks are still there – he can stop breathing at any time, yet he is able to attend school part time, with a 1:1 carer and we expect he will be full time from September.

With all these hours at school then, it makes sense that now, at last, I can consider returning to work.  Becoming a parent has, I’m sure, made me a better teacher, becoming the parent of a disabled child has taught me so many important lessons that I know will have positive impact on the way I teach.  I am in a unique position of really being able to empathise with the parents of the children I am teaching.

You’d imagine returning to work would be easy.  Hugh’s appointments are few and far between now and his health is relatively stable.  Teaching ensures I don’t have the additional worry of sourcing childcare in the school holidays either.

However, it’s not that simple. 

The unpredictability of Hugh’s condition means that he can be fine one minute and in the back of an ambulance the next.  He can, and does, get ill quite frequently too.  Unreliability doesn’t feature on many job descriptions.  A call 10 minutes before I’m due to start, or dashing out of class half way through a lesson, won’t sit well with many employers.  For this reason I considered supply teaching – working days of my choosing, avoiding illness and minimising the risk of letting people down at the last minute.

But I also have to drop two boys to two different schools each morning and pick them both up each afternoon.  Sean could go to afterschool club and it would be relatively easy to ask a friend or grandparent to drop him off or pick him up.  Getting Hugh to and from school is trickier.  He has a carer from 9-3.30 who stays with him at school.  Other than his carer, and me, Stephen and the staff at Acorns, no-one else is trained to care for Hugh.  Caring for Hugh involves being able to resuscitate him should he require it - giving mouth to mouth or using a bag and mask, administering oxygen, giving emergency rescue- medication for his seizures and being able to tube feed.  Furthermore, you’d need a car big enough to house his enormous special needs buggy, a specialist car seat and the strength of a bear to lift him.  In order to drop him off and pick him up, I could only work between the hours of 10 & 2 – can’t see that fitting in with many school timetables.

Photo credit
I’m not really sure how this situation can be resolved, but I feel the choice of being able to return to work has been taken from me.  I feel I have so much to offer since having Hugh and I trained long and worked hard to be able to do a job I loved.  Having a disabled child is three times more expensive than bringing up a typically developing child (See Contact-A-Family).  We’ve moved house so we can adapt it for Hugh which has resulted in a bigger mortgage, increased council tax and increased gas and electricity bills.  Heaven knows we could do with me returning to work.

The irony of the special needs teacher, not being able to teach after having a child with special needs has not escaped me.