Remembering Rory

November 3, 2011

There is a framed black and white photo hanging in my parents’ living room. It’s of me at my third birthday party, posed on the sunny garden wall while most of the other partygoers are playing in the background. Sitting beside me and holding my chubby hand in his, is my first playmate Rory. He was from just over the road, close to me in age and the eldest child in his family. Less than a year after the photo was taken, Rory died of leukaemia.

I only have snatched memories of Rory. I remember him calling to the door to see if I wanted to come out to play (it was the sixties, and our suburban cul de sac was a safe playground even for three and four year olds). I remember his little toy horse on wheels, which he called ‘Jossie’. Most of all I remember my mother gently explaining to me one day that Rory had gone to heaven. I cried and cried, though I must have had only a minimal understanding of death and its finality.

I’ve looked at that old photo many times over the years and wondered how my friend would have turned out had he survived. Rory’s parents somehow got through their unspeakable loss, have stayed together to this day and have raised two daughters. They still live on my old street and I often wonder how they coped with the devastation of losing their precious little boy, every parent’s worst dread.

Recently I ran into Rory’s mum Mary. She was very keen to know if I still remembered him. We began to talk about him, and for the first time I heard the story of the lead-up to his death. It was even more heartbreaking than I had imagined.

A few months beforehand, Rory had been admitted to hospital with complications following a bout of mumps. He recovered and was sent home but, to Mary, he was ‘never the same child’. She knew there was something wrong.

He was generally unwell and suffered repeated episodes of tonsillitis. She wore a path to the GP’s surgery to try to discover what was wrong, but time after time was dismissed as an over-anxious mother. The attitude she got was very much ‘there there dear, calm down it’s just tonsillitis’. But she knew.

Rory was given an appointment to see an ENT specialist, but it was months away. Eventually, in desperation, Mary took it upon herself to phone the consultant at home at the weekend. He wouldn’t hear a word of apology for calling him at home, and agreed to see Rory the following week. When Mary brought her son to the outpatient appointment, she also brought an overnight bag for him. Because she knew.

Sure enough, the consultant felt that there was something a lot more serious than tonsillitis going on, and admitted Rory immediately for tests. Mary says that leaving her son behind at the hospital that day was the hardest thing she has ever done.

When the results came through, her deepest fears were confirmed. Rory had leukaemia. It was at an advanced stage and he passed away just four days later. She told me that she still cries for her lost boy, more than forty years on. After she left, I cried too.

Before we parted, I asked Mary what her GP had said to her after Rory died. He apparently said he would always regret not listening to her and that in future he would pay much greater attention to mothers. Because they know.

Absent

September 8, 2011

I’m standing outside the door of my daughter’s school half an hour after classes have commenced for the day. The school secretary’s face falls as she approaches and she sees who it is, but she forces a smile as she opens the door. I know what she’s thinking; ‘Not you again’. I regularly interrupt this unfortunate woman’s work, turning up with whatever item my child has forgotten that day, be it lunch, homework or a vital book.

When I get home, I spot my son’s recorder on his desk. He was supposed to bring that in with him today for his music class. I’m not chasing after him, his school is too far away and in any case he’s older and needs to learn that forgetfulness has consequences. Yesterday I received a note from a teacher in his new school asking me to buy a hardback notebook for him. What she doesn’t know is that the notebook was purchased two weeks ago but has been languishing in his locker ever since. He forgets to bring it to class.

Between them my kids have lost two fairly new jackets and a water bottle in recent weeks. I get annoyed with them about this, but really I don’t have a leg to stand on. It’s all in the genes; they get their absent mindedness from me.

This week I totally forgot to watch or record the second part of a drama I had really enjoyed last week on TV, despite the fact that it featured David Morrissey (I have blogged before about my embarrassing crush on him). I greeted a man with whom I had arranged a meeting with a blank stare when he arrived at my workplace at the appointed time. I got distracted when processing an online payment from my bank and by the time I remembered again the cut-off time for payments had passed.

One wallet found its way home thanks to these guys

I could blame early senility, but my life has always been like this. I have left keys in hall doors and on shop counters, a wallet on a park bench and another wallet on the London Underground. I once went on holiday with no knickers because they weren’t on my list. I’ve had to call out the fire brigade because the grill went up in flames while I was upstairs reading poetry, toast long forgotten. I don’t even like poetry.

To my shame, I can be relied upon to forget birthdays and anniversaries of close friends and family. A friend once phoned me to know why I hadn’t turned up for a lunch date at her house. I rushed over, but she never really forgave me and I didn’t blame her. Why don’t I write things down in a diary or put them in my phone? Well I do, but then I forget to look at it.

What’s to be done? Are my kids to doomed to lead lives of mild chaos, constantly accompanied by that uneasy feeling that something has been forgotten?

Photo by Ian Mansfield, Flickr Creative Commons.

Consumer champion and money-saving guru from the Irish Times, Conor Pope was a guest on George Hook’s Newstalk show the other week. The topic was the cost to middle class parents of bringing up a child.

Conor pointed out that before the child is even born, most middle class parents pay between €3500 and €7000 to secure the services of an obstetric consultant – private health insurance does not cover this cost. Apparently you need to get straight on the blower the moment you see the little blue line appear in the pregnancy test window if you want to get the obstetrician of your choice.

Now this topic is a bit of a personal bugbear of mine. Why are women with straightforward, healthy pregnancies attending obstetric consultants for routine antenatal care and normal deliveries? Do they really need to shell out thousands of euros to have a highly trained consultant tell them that their blood pressure is fine, the baby’s heartbeat and growth are normal and that their blood sugar levels are no cause for concern? That is a midwife’s job.

The Royal College of Obstetricians and Gynaecologists in the UK lists the following definitions on its website:

  • Obstetrics deals with problems that arise in maternity care, treating any complications of pregnancy and childbirth and any that arise after the birth.
  •  Obstetricians work alongside midwives, whose speciality is usually normal pregnancy and delivery.

 In other words, during a straightforward, healthy pregnancy and delivery, there is no need for a woman to see hide nor hair of an obstetrician.

My first child was born in London 11 years ago. Private health insurance is relatively uncommon in the UK and I, like the vast majority of women, relied on the NHS for my antenatal care. Most of my antenatal visits were to the midwives clinic at my local health centre, with a couple of GP visits in between. I usually saw a midwife called Mandy, a reassuring and warm Welsh woman.

Everyone is assigned a consultant obstetrician, but only sees him or her if problems arise during the pregnancy. Because I had a history of hip problems, I was referred once to the hospital so that the obstetrician could confirm I was capable of having a normal delivery.

On the day of delivery, I was delighted when Mandy arrived on shift towards the end of the labour, and welcomed my son into the world. There was no doctor in the room. A breezy registrar had appeared shortly beforehand to check in on us, announcing that “if baby hasn’t appeared in the next 10-15 minutes I’ll be back to ventouse”. That did the trick. Ten minutes later Mandy was handing us our first child and it was wonderful to be attended by someone I knew and trusted.

Back in Ireland a few years later and expecting my second child, it seemed I had committed a terrible middle class faux pas by failing to take out private health insurance. A lot of people’s first response to my news included the question “Who is your consultant?” They seemed almost embarrassed to hear that I had thrown myself at the mercy of the public system, and I was given grim warnings about the endless queues I would face at the ante-natal clinics.

They were right, the queues literally stretched up and down the length of the hospital corridors. However, I never had to join those queues. At the end of my initial booking visit I was offered, almost as an afterthought, the option to attend a midwives clinic, as I was in a low risk category. This was apparently not a very popular option as I wouldn’t be seeing a doctor for routine care, but I jumped at the chance. At every subsequent visit I walked past the seemingly unending lines of women waiting patiently for a doctor, till I reached the door marked ‘Midwives Clinic’. Here, I never waited more than 10 minutes to be seen and was soon on my way home, passing the same women still queuing on my way out.

That was in 2002. Since then, a handful of midwife-led clinics have opened and a few hospitals are offering ‘domino care’, where midwives visit mothers before and after the birth in their own homes. These services are still very limited however, and are only available to public patients.

This seems to send out a clear signal that midwife care is somehow a second-best option. Of course there are many reasons why women need to see an obstetrician during pregnancy and childbirth. Older mothers, multiple pregnancies, high blood pressure and many other risk factors  require specialist care. Many women probably feel that they are not prepared to take any chance with the wellbeing of their precious child, and they want the reassurance of a familiar face at the birth. But if they were offered the chance to be cared for by a small team of midwives in their local area, one of these midwives would be there for them on the day. And of course at the first sign of a problem at any stage during pregnancy or labour, the midwife can call in an obstetrician.

I don’t know how this system of over-dependence on obstetric consultants and under-valuing of midwives has arisen here in Ireland. It seems an awful shame, not to mention a waste of money. After all, for most women, pregnancy is not an illness. If and when we get the long promised universal health insurance, perhaps everyone will be offered high quality community midwife care, with obstetric consultants available for those who need them, regardless of ability to pay.

An easy way out?

August 20, 2010

She stares at the word. She is concentrating very hard. I glance at the clock on the kitchen wall and begin to count the seconds in my head. Surely she’ll get this one? Fifteen seconds tick by before she is ready to say the word aloud. The word she is trying to read is ‘asked’. She gets it wrong.

My daughter is eight years old, and she has been diagnosed with ‘specific learning difficulties’. The most well known specific learning difficulty is dyslexia.

Almost every day for the last eighteen months, including weekends and school holidays, either myself or her dad has sat down with her to work on her reading manual – Toe by Toe. As its name suggests, it helps children learn to read in tiny increments. Very tiny increments.

It starts with single letter sounds then moves on to two and three letter syllables. Next up, blending two letters to form new sounds (like pl, cr, dw). We have ploughed our way through loads of exercises to help distinguish b from d, and p from q. Weeks, if not months, have been spent working on how vowel sounds change if an ‘e’ is added to the end of a word (the ‘o’ in ‘mop’ sounds different to the ‘o’ in ‘mope’).

With dyslexia, learning to read is all about rules, repetition and revision. Both of my children found ‘sight’ reading extremely difficult (my older child also has learning difficulties). They relied on sounding out the individual letter sounds of even short simple words like ‘it’, ‘for’ and ‘had’ long after their peers learned to recognise them instantly. In other words, they cannot read without the rules.

In the manual, no word is considered ‘learned’ until it has been read correctly on three consecutive days. Even when a new rule or skill has apparently been mastered, it must be dragged back into focus repeatedly until it eventually becomes subliminal. Of course, the manual is merely a complement to her daily sessions with the learning support teacher at school, who also gives her nightly reading exercises.

As you can imagine, this is all incredibly tedious for everyone concerned. The parent of a dyslexic child needs to draw on endless stores of patience (not something that has come easily to me). But we stick with it, because not learning to read is just not an option. We are encouraged by her slow but steady progress and the small triumphs along the way – I’ll never forget the day she finally mastered the word ‘before’. We still read aloud to her every night, so she doesn’t forget that reading is also a huge source of pleasure. It saddens me that she cannot do this for herself yet. At her age I was to be found surreptitiously reading by torchlight most nights. But, she’ll get there.

There is a potential cloud on the horizon. Because my daughter is being educated in Ireland, she is also learning Irish, a compulsory subject. Before she becomes an independent and fluent reader of English, she will be required to start reading and spelling words like this:

Bhfuil – pronounced ‘will’

Mhaith – pronounced ‘wai’

Briste – pronounced ‘brish-ta’

Gloine – Pronounced ‘glinna’

Suddenly, the rulebook is thrown out the window. The alphabet is different, the sentence structure is different, the pronunciation is alien and phonics, which she relies on so heavily, are useless.

Literacy in Irish is introduced at a time when many children with learning difficulties are still getting to grips with English reading and comprehension. In order to allow them to focus on core literacy skills in their main language, some children are granted an exemption from learning Irish.

My older child has already been granted an exemption. This came at the end of several months of severe stress for him at school when he found himself completely unable to cope with the demands of the Irish curriculum. He began, uncharacteristically, hiding homework from me and getting into trouble at school. His very understanding teacher called a meeting and suggested we get a psychological assessment, which led to the exemption being granted.

His teacher (who incidentally runs the school’s Irish club) was “delighted”, as an exemption would enable him to focus on his English comprehension and other problem areas. She also stressed that it would help his self esteem – not helped by regularly achieving 5%-10% in Irish tests, compared to 80%-90% for his classmates.

The compulsory learning of Irish is a fraught subject, loaded with emotional and cultural baggage. Many people regard being able to speak the language, which almost died out under British rule, as a badge of national pride. For this reason, many take a dim view of children being granted exemptions. The popular view, echoed by the media, is that they are some sort of scam perpetrated by middle class parents and educational psychologists in order to give children an unfair advantage over others.

Having dropped Irish, my son’s score on the standardised Drumcondra reading test has gone up by 12 points in a year. We have no regrets.

I don’t know yet whether my daughter will require an Irish exemption. But I suspect she might. If I am told by an expert that she could benefit from dropping Irish, I will have no hesitation in applying. I’m not about to see her fail to reach her potential for the sake of national pride.