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.

Thursday, 6 March 2014

A Tribute To Acorns Children's Hospice

The first time Hugh’s newly-assigned palliative care nurse mentioned Acorns to me, I shook my head and refused to be drawn into the conversation.  There was no way I was taking my baby to a Children’s Hospice. No way.  Hugh was only 18 months old. 

Hugh's first visit to Acorns
He’d been blue-lighted into hospital just two months earlier with seizures that wouldn’t stop; seizures that caused him to stop breathing again and again.  It wasn’t the first time it had happened, but this time was different, this time was worse.  We’d imagined he’d come around, as he always had done, tired and subdued, and that we’d be discharged some time later, ready to repeat the whole process again maybe hours, maybe days, maybe weeks later.  But this time he didn’t recover.  This time he was moved to the high dependency unit.  This time he was heavily sedated.  The terrifying things we’d dealt with so far – waking at night to him not breathing, giving mouth to mouth in the living room, paled into insignificance as, when the seizures finally stopped, we were presented with the shell of our baby, a ghost of his former self.  He’d always been delayed in his development but he’d made progress, albeit slow.  But now we were faced with a child so sedated he had to fight to even open his eyes.  And as he gradually adjusted to the sedation, it became apparent he couldn’t hold his head up anymore, he couldn’t move his limbs, he couldn’t even smile.  My heart broke.

We had ‘the talk’ then in hospital.  We were ushered to a side room while nurses stood guard around his bed.  I knew what was coming, but still couldn’t believe or accept the words I’d been told.  Hugh’s condition was life threatening.  He was unlikely to live to be an adult.  In all probability his seizures would kill him.

It’s a strange sort of way to live, knowing that at any moment your child might be taken from you.  You try to adjust.  You develop a new kind of normal.  But it’s there lurking in the back of your mind all the time.

We took Hugh home eventually.  He was still heavily sedated, still unable to smile and was now fed through a tube in his nose.  We’d taken him into hospital for something that had become almost routine to us, and we left some time later with a palliative care nurse, a feeding tube, oxygen and a bag and mask so we could resuscitate him, and a child that no longer resembled the one we’d grown to know and love.

Our palliative care nurse broached the subject of using Acorns again and again, tentatively, tactfully, until one day I agreed to listen.

Hospice conjures up so many images; death, dying, misery, sadness, suffering.  I didn’t want to associate myself or my child with any of those things.  I was strongly in denial over Hugh’s prognosis, I wasn’t prepared to accept that future for my child.  But what finally tempted me to even remotely entertain the idea was that it might enable us, as a family, to spend time with Sean our eldest whilst Hugh was cared for by nurses.

Acorns treat the family to a day out at the zoo. (June 2012)
By this time Sean was still only two and a half – a baby himself by anyone’s standards.  He’d been bundled into the back of cars of friends whilst I rushed off in an ambulance more times than he’d been to the park.  He’d visited his baby brother in hospital attached to drips and wires more times than he’d been to parties.  He’d been kept late at nursery and picked up by his grandad countless times after I’d phoned from A&E in a panic.  He’d be tucked in at night by me or his Dad and he’d wake up in the morning to find his uncle looking after him instead because Hugh had been rushed into hospital again.  He’d seen me give mouth to mouth to his baby brother while he watched Fireman Sam time and time and time again.  He was a baby himself; just a baby.  The guilt I felt at not being able to think about Sean’s needs was what made me consider Acorns as a viable option. 

Our first attempt to visit was thwarted as just half way there Hugh stopped breathing in the back of the car.  We stopped at the side of a busy dual carriageway and I knelt in the mud and gave him mouth to mouth as cars whizzed by.  I was shook by that one incident more than any of the hundreds of previous times before.  I became terrified of even leaving the house, just in case.  I could no longer turn my back on Hugh – there was always the very real risk he wouldn’t be breathing on my return.  It meant that every single moment of every single day, I was on high alert, ready to respond should it happen again.  And it did.  Again and again and again.  It was exhausting. 
Sean (age 3) in his favourite costume at Acorns

We finally managed to visit Acorns and were welcomed like long lost family.  It was warm and inviting and brightly coloured and didn’t smell of hospitals.  I loved it and hated it in equal measures.  I loved the atmosphere and warmth and all the opportunities for both the boys.  Sean was taken away by a volunteer befriender to eat biscuits and dress up as Sully from Monsters Inc, while we drank tea and talked to the nurses.  The sensory room was just magical and the hydrotherapy pool promised us the opportunity to go swimming together as a family – something we’d never managed before. 

But... But ... But ...

As we wandered the grounds and ventured into the beautiful, spiritual, peaceful tranquillity of the memorial gardens and I seen the names etched on stones in the rivers and the birthday balloons and flowers, I had to bite back the tears and swallow the huge lump in my throat.  I couldn’t bear that future for my baby.  I still can’t.

But the staff at Acorns understand that.  They expect and appreciate and address your worst, most terrible fears.  Yes, dying is an aspect of life at Acorns.  They provide wonderful end of life care for countless families.  They support them in preparation for that, through the final stages and beyond.  Bereaved families continue to receive support from Acorns for as long as they want it.  Thankfully I haven’t had to consider this aspect of their care in too much detail yet, but I know one day I might and (I can say this now, but it has taken me a long time to get to this stage), I am glad that Acorns will be there to guide and support us if and when that time comes.

Acorns don’t just offer end of life care though, they offer respite too.  Each week the hospice at Selly Oak look after up to 10 children with complex medical conditions and high levels of care to give their parents and carers a break from the enormity of their role. 

Being able to swim together at Acorns is really special
I suspect at first I was a nightmare parent, though no one ever made me feel that way.  I felt so wholly responsible for keeping Hugh safe, keeping him alive, that I daren’t trust anyone else.  Initially Hugh and I had ‘days out’ at Acorns.  We’d swim together or I’d sit and have a cup of tea while a nurse put on his feed.  A break, a little break, and the chance for me to talk to a kind and friendly and understanding ear.  Gradually, slowly, I progressed to allowing Hugh to be taken to other areas of the building while I read and drank tea.  Then Stephen and I would leave for an hour and take Sean to the playground at Cadbury World or to the Park just minutes away.  We were away from Hugh, but not too far.  Tiny step, by tiny step, the wonderful staff at Acorns supported and helped us trust other people with his care.  They never patronised me or ridiculed the difficulty I had in letting go.  They have always accepted that he is my baby and have made me feel that they feel honoured to be allowed to care for him.  I think the staff there genuinely do care for Hugh, I mean really care about him.  I’d go so far as to say I think some of them love him.

We slowly, gradually moved from day-care to overnight care, with the whole family staying upstairs while Hugh was cared for by nurses downstairs.  We could visit him however many times we wanted.  And I did.  Sean loved it.  There’s an xBox in the family suite.  He couldn’t believe his luck.  We’ve not stayed there for a while and he still asks now if we can go to stay. 

Hugh has stayed there for two and three night breaks – by himself – since then and I am OK

Hugh and I in the wonderful sensory room
with that.  Better than OK, I enjoy it.  I enjoy myself.  Last weekend I danced and drank beer and danced some more until the wee small hours of the morning, safe in the knowledge that I wouldn’t have to get up with Hugh countless times in the night.  I had a brilliant night out with my husband.  Without Acorns, I couldn’t have done that.  We’ve both taken Sean to the cinema and out for dinner and to a cold and noisy swimming pool with slides.  Without Acorns, we couldn’t have done that.  Acorns have helped bring a little normality into our crazy, exhausting, medically dominated life.  They’ve allowed me to be me again.  They’ve helped me trust others.  They’ve enabled me to spend time with my husband.  They’ve helped us both spend time with Sean, together.  They helped us go swimming as a family and spend quality time together, all four of us.  They’ve introduced me to other mums and other families in similar positions so I don’t feel so isolated and alone.  There’s a Dad’s club too (though Stephen hasn’t joined – yet), and a siblings club so Sean can meet other children who will understand the huge mix of emotions that he must feel. 

I wish, with all my heart, that Hugh didn’t have a condition that was life threatening; with every fibre of my being I’d love to just expect him to grow old and grey, rather than it just being a whisper of a hope.  But this is the life he has, the life we have, and I couldn’t think of anybody better to support us and guide us and help us through this emotional, exciting rollercoaster of life, than Acorns.

***** ***** *****

My husband Stephen and I are doing a skydive in May (eeeeek!!!!) to raise money for Acorns Children's Hospice.  I am absolutely terrified but it'll be worth it to be able to thank them for all they have done for us.  If you'd like to sponsor us, you can do so by clicking the link here:

JustGiving - Sponsor me now!