Monthly Archives: November 2013

When Premmies Get Poorly

It’s never fun when your little one is poorly. Sissyboo was never a sick child. She got a bunch of the childhood usuals – chickenpox, tonsillitis – but not that badly. OK, she usually managed to get seriously ill out of hours – why do kids always do this? – forcing us to rely on overstretched A and E services or an out-of-hours GP it takes ages to see before he or she sends you to A and E, but mostly she and we got off lightly.

I’m repressing the time she got croup and nearly stopped breathing. That was terrifying. But even then one emergency steroid shot and she was running round A and E in a vest and nappy and singing nursery rhymes to random strangers. Mostly, Sissyboo’s illness involved lack of sleep, emergency work/childcare arrangements, cuddles on the sofa and books and films. It was never convenient, but ultimately bearable and the sofa time with her even felt like a bit of a luxury sometimes.

Of course, that didn’t stop me worrying about her. But my sense of what constitutes worry now has been totally recalibrated. Who knew there was a whole other level of panic to experience? Not me. Not until prematurity and disability entered our lives.

I’d never diminish the worries of parents who don’t have medically vulnerable children. Up until two years ago I was one of those parents and I got anxious and stressed by all manner of things. The same things wouldn’t worry me in the same way now, but my worries then were no less valid than those I harbour now. But everything’s different when your child has been through so much. When every setback has so much potential significance.

You see, when premmies get poorly you don’t just have to treat the illness. You have to deal with all that came before it. A cold isn’t a cold if you’ve been on a ventilator for a while. Old scars wake up, newly agitated. As I write this at 2 in the morning, I am cuddling a wheezing Boo who has a probably mild virus but one that has agitated the damaged lining of his lungs just enough to sound like he has had an 60 a day smoking habit for 50 years. A mild virus means steroids and two inhalers and a medicine schedule so full and complex I’ve had to draw up a chart.

And it’s not just the real scars that come back to life when premmies get poorly. It’s those pesky metaphorical ones too. The hurt you feel as you helplessly watch your baby fight to survive, thrive and get home. The pain that accompanies the fear that these things might not happen. The memories of hospitals, treatments, their side effects and unhappy conversations. The anxiety that hard won progress will be lost. I had planned to write a blog post about Boo’s latest developmental spurt this week. Instead, I am sat on a cold floor trying to get him to sleep and wondering if we will get away without a hospital trip this illness and counting down the minutes until I can give him the next ten puffs from an inhaler. I hope I can still write that post next week, but I don’t know how far this will have set him back.

In short, when premmies get poorly you are reminded of how vulnerable your children and you are. You are reminded of how far you’ve come and how far you have to go.

The Therapist’s Approach to Christmas

OK, so call me Mrs Scrooge, but here’s my confession: I’m not really looking forward to Christmas this year.

Before you pelt me with metaphorical baubles, let me explain. I’m not such a Grinch that I can’t get excited about it a little bit. Alright, a Tesco ad is never going to make me cry and Yuletide shop windows in October leave me cold. But I do love it for the kids’ sake. Sissyboo’s excitement is a wee bit infectious and some of it has rubbed off on me. And now that her birthday has been and gone I feel like I can and have to get organised.

But I also don’t want to. You see a big part of me, the part of me that crosses my fingers before certain medical appointments or opening certain letters addressed ‘To the Parents of Mr Boo’, the irrational me, doesn’t want the advent calendar door on the 24th to open.

I’ve had some less that perfect Christmases in the past 30 odd years but last year’s was a humdinger. Last year was also the first that I’ve ever let myself get really excited about.  It had been a tough old year, to put it mildly, but after 8 1/2 months we were all together and doing well. Boo was progressing, albeit slowly, and he was home and with us. Sissyboo had settled in at school and was doing so well with all the challenges our new life had brought her. We were spending Christmas with my folks. It would be no work. No hassle. All hands on deck and more food and drink than was decent.

And then Boo started to have seizures.

I won’t recount the details of us discovering that he had infantile spasms – a catastrophic form of epilepsy caused by the brain damage that is the root of his at the time not diagnosed cerebral palsy. The whole sorry saga is well documented here.

He had several episodes as we called them at the time on Christmas Day (not obviously seizures, but I suspected that they were nonetheless) and all I remember about Christmas Day was a crippling anxiety, a dry mouth, worry that I would ruin everyone’s Christmas if I took him to A and E and terrified to death for the consequences if I didn’t. I took him in on Boxing Day and what followed involved three hospitals, three hospital stays and some of the worst months of our lives.

Boo has been seizure free for 10 months now. He was diagnosed quickly and responded well to treatment. We were and are lucky. Very, very lucky. But the spasms could come back or morph into another form of epilepsy at any point. Fear that this will happen – that he will start seizing again and lose the skills we have worked so hard to develop – resurface often in my mind, but I try to focus on the good, how long it’s been since his last seizure, how well he’s doing. Usually I don’t let it get me down.

But in the long hangover from last Christmas I am struggling to think about this one. I know it’s daft. There is no more reason to think that Boo will start seizing again on December 25th this year than tomorrow or never. It’s just a date.

Anniversaries are hard in Premmieland, though, as I’ve documented on the blog before. Even though they give plenty of opportunity for celebration – of how far we’ve come – they simultaneously clobber you round the back of the head and don’t just remind you but make you feel, smell, hear and taste things you don’t want to recollect.

I know it’s silly but I’m frightened. Frightened of allowing myself to get too excited for this Christmas (the happy, family one we should have had last time round) and setting us up for a fall. I’m frightened that something else will come to knock the wind out of our sails. I’m frightened I won’t be able to cope if it does. I’m frightened of memories making me sad on a day when I should be happy for my kids’ sake. And I owe it to them to be strong. They deserve a fabulous Christmas. Sissyboo most of all. I am determined she will have one.

So this year I am not dreaming of a white Christmas or perfect parties or anything resembling a Tesco ad. No: I’m approaching Christmas as I have learned to approach life since Boo.

Call it the therapist’s approach to Christmas, if you like. My plan is to keep plugging away at the day-to-day by doing what needs to be done to give us the best chance of things working out but safe in the knowledge that things will either go to plan or not. I only have a limited control over these things no matter how hard I try. I know that now. And yet whatever happens, experience tells me that it will probably be OK. And if the determined, crazy little Boos stay true to form, it could just be marvellous after all.

Good News Friday #33: Bee Happy

Well, how did that happen? It’s Friday again. It’s been a frantic week and it ain’t over yet.

But I was determined to get a Good News Friday post out and on a Friday. Because this week we have had some especially great news.

I could write a long post about it, but if you follow this blog and our tedious and upsetting battles in getting equipment for Boo, you’ll know what this means.

10 months of waiting, complaining, tears, negotiations and upset. It has been horrible. But now we are the proud users of a Jenx seating system for Boo which should see him through to age 4-5.

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He is comfortable and posturally sound for the first time in his 19 months of life. And he and we couldn’t Bee happier!

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I so hope you have some good news to share with us, too. We love to hear from you!

Bubble, bubble, bubble, pop

Boo has been attending a conductive education nursery one morning a week for two months now. Conductive education is one of a gazillion (take it from me: I’ve counted) on the list of words I didn’t know before I had my little boy. And it’s a phrase that generates interest every time I mention it to friends, on Twitter or the blog. What is it? Does it work?

Those are big questions and not easy to answer briefly, but I will attempt to do so soon in a dedicated post. You can read a little more about its principles here. For now, all you need to know is that conductive education is a highly structured routine and group based set of learning activities that are designed to encourage the cognitive and physical development of children with neurological and motor difficulties, especially (but by no means exclusively) cerebral palsy. The long-term aim is to enable children to live as independently as possible and all physical and cognitive tasks practised each session are designed to promote that, whether it’s taking your shoes and socks off, feeding yourself, brushing your hair, or getting down from the dinner table. Conductive education settings are often called Schools for Parents. The reason for that is that we have much more to learn than the kids. And we work with our own children, one-to-one, with the help of the teachers.

Boo LOVES conductive education. He is sociable, and really likes all of the other 5 children in his class. (So do I. They are all amazing, funny, sweet and tenacious little people.) He also adores the teachers and would spend every minute of every session cooing, smiling and otherwise flirting with them (a good way of making sure he gets the second helpings of lunch and pudding he always manages to get) if we let him. But make no mistake. Conductive education is really hard work for him and for us. Brutally hard work, sometimes. For three hours a week, every wrist or head angle, leg or back position is monitored and corrected. There is no giving up.

Boo has got used to the routine of conductive education (the same activities – with variants – come in the same order each week) and anticipates the next one now. Among his favourite tasks are the anticipation games that are played. So at different points in the session the children have to be still in any given position (they do it in lying, on their tummy and sitting), hold that position (not easy) and then listen for a ‘ready, steady’ and then anticipate whatever exciting (often movement, light and sound involved) action is going to follow, and which they then have to track. But this doesn’t happen until someone (one of the children) makes a sound, whether it’s a fully sounded ‘go’ or other excited noise. This is physio, occupational therapy and speech and language all at once.

Two weeks ago we were getting ready to do this and Boo was sat on a low box with his legs at 90 degrees. He had a ladder chair in front of him so he could hold onto the rungs to keep upright (he can’t sit independently) and I had my fingers lightly on his pelvis to stop him from tilting/falling. While he was waiting for the ready, steady, go he was making some very odd noises. To be honest, I thought he was filling his nappy, but I couldn’t see his face as I was behind him. But the noises got louder…

I was just about to check when I felt a force pushing my fingers away from him. Boo had stood up. He had pulled to stand using the ladder chair and was giggling as if the most hilarious thing in the world had just happened. Everyone stopped. Now normally, conductive education is quite strict. If you are doing a sitting activity, you sit, you don’t stand. But no one told him to get back down.

We were all amazed. He had pulled to stand. I never thought he would be able to do this.

OK, he was wibbly wobbly in his trunk. But he was standing tall and proud and he was so pleased with himself. No one was going to rain on his parade and tell him to get back down.

I came home excitedly and told the Grumposaur, who was about as shocked as me. But in Boo Land, while we take every bit of progress and celebrate it we are also cautious. It doesn’t pay to get too excited here, as pride often comes before a fall. So we took the good, but told ourselves it might just have been a one off.

Except it wasn’t.

The next week the children were being encouraged to sit still by watching bubbles. Boo would do anything for bubbles. But if you ask him to pop them with his arms or lips, well… nothing doing. But it did encourage him to sit nicely on his box with the ladder chair in front. Until the bubbles stopped.

It happened again. He pulled up to stand and started roaring like a lion cub with excitement. Then he sat down and did it all over again just to show us it wasn’t a fluke. He got lots of bubbles as a reward. Boy he deserved them. I couldn’t believe it.

And then just as I thought there was no breath left in my lungs I was forced to expel the very last bit. Over-excited by the sea of bubbles around his head. He let go of the ladder chair that was holding him up with one hand and reached up to pop the bubbles.

Tears of disbelief and joy welled up. I still can’t believe he did it. Talk about trying to run before you can walk (or stand before you can sit in Boo’s case).

Moments like these are priceless. When you have been trying to teach your son to roll back to front daily for about 16 months, trying to get him to sit for over 12 your will gets ground down no matter determined you are. But Boo’s doesn’t. He never gives up and I will never give up on him doing anything so long as he is willing and able to try it.

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Preventing Prematurity and Banishing Blame

Sunday was World Prematurity Day. It was the second since Boo was born, but the first since I have been blogging and the first one that I felt I could get involved in in my own small way. I wrote a blog post in which I tried to sum up what prematurity has meant for my family and (around Sissyboo’s 6th birthday party) tweeted, chatted online and read blog posts by others for around 16 hours. It was emotional and exhilarating, two words I didn’t really know the meaning of until having a premature baby of my own. The premature baby community – a global one – fought back against the challenges our children and families have had to face with eloquence, compassion and fierce tenacity. We learn those things from our children.

The focus of my tweets and posts last week was all about what comes after pre-term birth rather than before. Because, frankly, in my experience, once you’ve had a baby born too soon pregnancy fades into obscurity. Except that is, in those vivid moments at 3.06 in the morning when they flood back. When you torment yourself by thinking did I do this? Did I do something wrong? Is it my fault my son was born at 29 weeks? Is it my fault he has cerebral palsy? Will he grow up hating me if he can never walk? I’ll come back to those moments shortly, just as my brain does, with cruel predictability on a weekly basis.

Given how resolutely I try to focus on life after prematurity on the blog, I was especially grateful to be invited for a World Prematurity Day event hosted by Tommy’s and Bounty at the House of Commons yesterday which was devoted to pregnancy health. To be honest, I wasn’t sure what to expect. This is the first time that I have been invited to anything on the back of my blog. I was flattered, interested and nervous in pretty much equal measure. And then I was delighted to learn that two of the wonderful women who work for First Touch, a neonatal unit support group at St George’s in London would be there and that Jennie from Edspire, whom I’d never met, but who has been one of several bloggers who have led me by the metaphorical hand through the last 19 months would be speaking. I have a lot to learn about prematurity still and was eager to find out more to enable me to do as much as I can to help others.

The focus of the event was on prematurity prevention. In particular, Tommy’s was promoting their Five Point Pregnancy Plan, which was launched two years ago and which is disseminated via Bounty to their staggering 2.5 million members. You can read more about the plan and Tommy’s work in identifying and helping vulnerable women here. But the main areas of focus are as follows: smoking cessation, eating a nutritionally adequate diet, exercising, tackling obesity and addressing mental health issues.

This is not, as you’ll notice, a prematurity-specific plan. It’s about promoting healthy pregnancy for all women, whatever the outcome. It may sound like old-fashioned common sense, but this is vital information that needs to get out there. As Jane Brewin from Tommy’s noted in her speech, it is shocking to think that there are women in this country today who are struggling or otherwise unable to achieve a nutritionally balanced diet for themselves and their unborn children, but it’s no less true for that.

The importance of giving women the right information so that they can make appropriate ‘lifestyle choices’ – the buzzword of the night – was made passionately and everyone in the room was, I’m sure, in agreement that empowering as many women  as possible in pregnancy to make healthy choices for themselves and their children is an incredibly important initiative of which Bounty and Tommy’s are justly proud.

So why did I feel so uncomfortable? Why did I have tears rising to my eyes? (I’m not a crier, by the way. It takes a lot to make me cry.) I have to answer that question in two parts, I think. The two parts of Mrboosmum need to speak.

First, there’s professional me. For reasons you don’t need to worry about, I have spent quite a lot of time reading pregnancy and midwifery manuals from the seventeenth century onwards. (I know, I’m an odd individual. Truly.) Obviously, what was known about pregnancy and labour, let alone prematurity (a term that wasn’t even around at the time), was very different then when compared to what we know now. But there is a striking continuity of advice offered to pregnant women over the past 300 years. In the eighteenth century there’s a lot of advice about not playing cards too much (exciting the brain was supposed to lead to still birth or ‘birth defects’) and eating lots of chocolate and sitting on the sofa is very much frowned upon. The advice is: exercise, but not too much; eat, but not too much etc. Sound familiar? (I could go on, but you get my drift…)

There is a good reason why things have changed so little. This is sound, sensible and now medically-verified advice that women should be heeding. But tone is important, I think. The phrase ‘lifestyle choices’ makes me bristle. In the eighteenth century the term was ‘female employments’, but it means the same thing. Women are unreflectively doing the wrong things and making the wrong choices about how to pass their time through pregnancy.

The rhetoric of choice is a difficult one for me. I have never smoked. I know many women who have who have chosen not to smoke in pregnancy. I have known people take up gym memberships or opt to go on diets before trying to conceive. But is this really all about choice? For some women, eating healthily is more an act of will than a matter of preference, as Jane Brewin implicitly suggested yesterday. Diet is, of course, affected by various socioeconomic factors. They need to be targeted as much as women do. And mental health? Well, where’s the choice there except that stigmas need to be removed if women are to feel able to accept help it if and where it can be accessed. If I could have written ‘if’ in capital letters and not look like I was shouting, I would have.

Let me be clear: making informed choices available to all pregnant women is important. And I am glad that Bounty and Tommy’s are doing this work. But choice also implies responsibility and with responsibility comes blame. So let the other me speak. The Mom me, rather than the professional me (although, to be honest, we are the same person.)

Mom me will never forgive myself for Boo’s premature birth. I have tried. I wrote a blog post about it and re-read it regularly. I spent 6 weeks doing cognitive behavioural therapy. But I will never forgive myself. I know that.

Did I make the wrong choices?

No. I was not over 40 when Boo was born (one lifestyle ‘choice’ and proven risk factor mentioned in the  presentation but not part of the Plan). I took folic acid and pregnancy vitamins for months before I tried to conceive. I have never smoked and didn’t drink. I am a vegetarian of 25 years and eat healthily and well. My BMI was normal. I exercised gently but regularly, so much so that weeks after giving birth to Boo and breastfeeding I started training for a half marathon to fundraise for premature babies. I have my own mental health issues, but didn’t in pregnancy. I have prematurity to thank for them.

On paper, at least, I look like a paragon of pregnancy virtue. A ‘good girl’, in eighteenth-century terms who in twenty-first-century parlance made all the right choices.

But my son was born at 29 weeks in a spontaneous labour. I had had one healthy term baby before that. This shouldn’t have happened to me. To him. But it did.

And I am not alone. I am one of the around 40 per cent of women who gives birth prematurely with no known cause. And I am grateful that Tommy’s funds research into prematurity because I hope that in the future they may be able to lower that shocking statistic (although us forty per cent weren’t mentioned yesterday at all).

Important though the 5 Point Plan is, I was already following its advice and it didn’t help us. Neither did it help Jennie, nor my colleagues from First Touch. All of us read the books. It made no difference in our cases.

And so the tears rose up in the presentations. Because this rhetoric of ‘choice’ can feel to mothers like me who made the right ones like a rhetoric of blame. I know rationally that I have no reason to feel guilty. The last time I shed real tears, lots of them, was just a few weeks ago when Boo’s cerebral palsy diagnosis was confirmed. I wasn’t crying because he has CP. I’d known that for many months before the piece of paper arrived. I didn’t cry when I saw the words ‘severe brain damage’ because I saw that damage for myself on CT scans in May of last year. The images are etched into my retina.

No: I cried because the MRI scan confirmed that it wasn’t my fault. Boo’s brain injury was not sustained in pregnancy. Nor on the day he was born. I didn’t do it to him. He got an infection. In the neonatal unit. It caused the massive brain bleed. Not me.

But I will feel guilt until the day I die, even though I know this is not my fault. Jennie, at several points in her wonderful speech about Esther and William yesterday, talked about her ‘failure’ to take her children to term. I nodded through the tears (this time tears of solidarity), because I share that sense of failure. I feel it daily even though my head knows I shouldn’t.

Information is vital. I work in education and am passionate about it. I believe in women having choices in all aspects of their lives and access to all of the resources they need to make the best decisions for themselves and their families. And I am grateful to the work of Bounty and Tommy’s.

But what I feel most passionate about today is doing more. More to raise awareness about prematurity and its many known and unknown causes. More to support other women who are about to or have already experienced premature birth. More to help them live with prematurity and whatever that brings, whether its beautiful, healthy children like Esther and William, or gorgeous babies like my Boo, who will never outgrow prematurity and will live with cerebral palsy and epilepsy for the rest of his life.

I will not stop, because prematurity is not just a pregnancy issue, or something that ends with your stay in the NICU. It stays with you and your children forever.

Good News Friday #31 and #32

Yes, Good News Friday was overlooked last week. Blame Katie Price. I was so deeply upset by her ill-judged interview with Radio 5 in which she condemned many parents of disabled children as too ‘lazy’ to access the resources they needed, that when Hayley at Downs Side Up set up a linky, well, I had to address that rather than focus on good news.

But there has been some. Lots. So much, in fact, that this going to be an edited highlights and I will flesh out some of the other stuff (like what Boo’s been up to in conductive education) for other posts next week.

Sissyboo

My fabulous no-so-little girl turned 6 this week. It’s been a week of celebrations, with presents and a family tea with just us four Boos on Wednesday, veggie hotdogs and cheesecake (not all at once, you understand) and a party with a few school friends tomorrow and grandparents and the little Boo’s favourite female other than Mummy, my sister. She really is in a good place at the moment in terms of Boo and the way she wanted to share him in all her birthday fun (getting him to help unwrap presents and blow out the candles – two things that are very difficult for him), well, let’s just say it made my day.

Boo

Well, I leave you hanging on what’s going on with Boo at conductive education. One for Small Steps Amazing Achievements next week, I think. But things are slowly coming together with equipment. His standing frame unexpectedly arrived about an hour ago. And after nearly breaking my back to get it into the kitchen, it’s all ready to set up. Even more exciting, his chair arrives next Tuesday and after many months, our wheelchair services referral came through for him to be assessed for an adapted buggy. All of these things will greatly improve his life and ability to be included in games, meals and things most of take for granted. It has been a real battle, but it’s coming together. 

The blog

OK, so first a post of mine in support of Home-Start’s fabulous Snowflake Appeal got put on the Good Housekeeping website, and tweeted about by Kirstie Allsop. Then I won a blogging competition! I am still gobsmacked about it. I am very proud to be a member of the Mum Network Trusted Bloggers Club and a few weeks ago I entered an autumn carnival on the theme of ‘The Juggle of Modern Motherhood’, where I wrote about a day in my life. It was an entirely real day. The carnival had some amazing entries and the fact I won (and won a ticket to Britmums Live) is just astonishing to me. Now I just have to work out how being a secret/anonymous blogger works with attending a blogging conference. Answers on a postcard please.

World Prematurity Day

The big news this week is that it’s World Prematurity Day on Sunday. This time last year, I was too much in the thick of prematurity to think about contributing to the day, but this year, I have written a post on Bliss’s wonderful theme of The Impossible Hug and a post where I try and explain what prematurity means to me. called Why Prematurity is Like The Matrix. I’m also very much looking forward to attending a reception highlighting research into prematurity hosted by Tommy’s and Bounty at the House of Commons on Monday. I’ll let you know how it goes. Now, do I have a frock that still fits…

OK, over to you. I’d love to hear your good news this week. 

And please, this weekend, do spare a thought or any pennies you have for any of the leading charities working to prevent pre-term birth or fund special care for some of the 15 million children born too soon across the world every year.

 

 

Why Prematurity is like The Matrix: A post for World Prematurity Day

Do you want to know what it is? Prematurity, I mean.

This blog is, in large part, my attempt to tell you just that. And this week, the week that will conclude with World Prematurity Day on November 17th, I want to do that more than ever. I want to tell you what prematurity is.

I don’t mean technically. You probably know that prematurity is clinically defined as birth before 37 weeks gestation. You may also know that 15 million children are born too soon every year, 60,000 of which are born in the UK alone. But parents of premature babies (though, in my experience, they frequently cling to statistics) know that facts and figures don’t mean all that much when it’s your child who has been delivered in a pre-term birth. If you are quoted an 80-90 per cent survival rate for your child (as we were) and, unimaginably, they are one of the 10-20 per cent who die, or if you are given a 70-80 per cent chance that your child would outgrow their prematurity (as we were) and they don’t (as Boo can’t), well let’s just say that statistics don’t mean a thing.

They are not prematurity.

Prematurity is despair that runs so deep that you feel you can plunge no further. Prematurity is hope that makes you fly so high that you can barely breathe with the excitement it generates. Prematurity is pain and joy. It is death and it is life. It brings into focus what it’s all about. What really matters. And once you have experienced this, nothing will ever be the same again.

You see, prematutiry is like The Matrix. I never thought I would be the one this happened to. And there are moments – who am I kidding, I mean days – when I wish Morpheus would enter my life with his funky shades and offer me a blue pill so that I could forget about it all. So that I could go back to my happy, pre-NICU existence, where I just got on with the job of looking after my kids and going to work and socialising.

This life tastes bad sometimes. There have been days that have felt stiflingly grey, when I have longed to breathe fresh air and taste the pleasures of my former life. Days when I have been scared out of my wits by things I hadn’t ever known about before: about long lines and lumbar punctures; about brain bleeds and cerebral palsy. I rather liked the normal world that was pulled over my eyes for the first 35 years of my existence. But of course, I had no idea how bloody lucky I was at the time.

I can’t go back. This is my new reality, a reality that is structured as much by prematurity as it is by the passing of the seasons and the days of the week. It is everywhere in my family’s life, even though we left the NICU well over a year ago.

But this is only part of our story. This is only part of what prematurity is. Because prematurity is also jaw-droppingly revelatory. It opens your eyes to a world that was always there, but (in my case) you never really knew existed. And it’s a challenging world, to be sure. It’s a difficult world. Yet it is also an astonishingly beautiful place in which the truth about life, about why it is so very precious, is revealed. How could you ever appreciate a finely cooked steak if you haven’t tried to digest the indigestible? Ignorance is not bliss. It’s only when everything you hold dear is on the line that can you appreciate it. I mean really appreciate it.

There is no blue pill for me. But if I were offered it, I wouldn’t take it even if I would give my soul for my son not to have cerebral palsy.

You see, prematurity is the scales falling from your eyes. It’s seeing what makes the world turn on its axis. And once you’ve had a glimpse of this reality and seen it for what it is, you see everything differently and you bat away all the trivial stuff that preoccupied you before the NICU like a fly to the swat.

Because none of that is real in the same way. I can see that now.

Prematurity affects the lives of millions of families across the world every year. On World Prematurity Day, please consider giving a donation, or volunteering some of your time, to one of the leading charities (such as Bliss, Tommy’s or Bounty) that fund research into pre-term birth or who offer invaluable support and care for families affected by this life-changing event.

Thank you.

Remembering a Great Grandfather

It doesn’t need to be Armistice Day for me to remember my grandfather. He may have died four and a half years ago but there isn’t a day that goes by without me thinking about him or my Nan (who died six months to the day after he did). But on Armistice Day I think about him more than ever.

I was walking around a supermarket yesterday buying party bag fillers for Sissyboo’s big day this Wednesday, when our negotiations over content were interrupted by a tannoyed warning that at 11 we would be asked to observe the 2 minute silence. Although they have talked about Remembrance Day at school, Sissyboo asked why it was really necessary to interrupt her excited mission to buy enough glitter and confetti to outcamp the set of Strictly Come Dancing.

I explained that we needed to do this to remember the many hundreds of thousands of men and women around the world who had given their lives in the service of their country. But since that is a bit abstract for even a compassionate nearly six-year-old, I added ‘it’s to remember people like my Grandad who gave up so much for us.’

‘But he didn’t die in the War, Mummy, did he? I met him when I was a baby, didn’t I?’ she said. She’s right. He survived. Once he flew his damaged bomber plane all the way back to the UK with only one other crew member alive on it. But he survived, even if he carried the war with him until the day he died. And how he did so was one of the many things that made him a great man in my eyes.

My Grandad was one of nine children to a working-class family in one of the most economically deprived parts of the Midlands. Somehow, with little formal education behind him, he became a highly-regarded bomber pilot. The war saw him become a bit of a hero to those who knew him, including my Nan whom he met and married in those years. All the pictures we have of him from the early 40s show a handsome man (he looked virtually the same until the day he died) who was always laughing and joking and the centre of any party. He remained that man for the rest of his days, despite being beaten down by years of caring for my grandmother whose descent into dementia no doubt contributed to his own death. But the war clearly changed him, despite his love of life.

He rarely talked about those years. When he was demobbed, he elected to come home in a badly fitting suit rather than wear his uniform. My Nan was livid and couldn’t understand why he wasn’t proud of what he’d done. But he could never quite come to terms with the reality of war (of what he had done) even though he was a patriot and would have done the same had he had his time over. He would tell you as much if you gave him enough glasses of scotch. (It took quite a few – another war legacy.)

There were good times, for sure. He loved meeting people from all over the allied world. He loved travelling to Canada where he was based for a time and was offered a job after the War that he longed to take but couldn’t accept because my Nan wouldn’t leave her mother and sister. He once danced with Ginger Rogers in the Stage Door Canteen. I still haven’t quite picked up my jaw after hearing that anecdote at the age of 7. But these were poor compensations for the horrors he saw and inflicted. And the sadness it brought him when he allowed himself to think about it was clearly immense.

I’m not saying my Grandad’s response to his war years was the right one. It was unique to his experience. But it helped to turn him into the man I knew and loved. Correction: love. A man who valued family above anything, who was proud of his kids and grandchildren beyond anything that tallied with our achievements. He was fun to be around and the life and soul of any celebration, because he could have fun in the way that only people who have known real horror can. Because he knew what really mattered and what was at stake.

I don’t regret many things in life. I don’t much see the point, to be honest. But one thing I do deeply mind about is that he never got to meet Boo. When he met Sissyboo, Grandad was frail and more ill than he would let on to us. But the minute he saw her, she rekindled his energy and that zest for life that I will always associate with him. It meant so much to him to meet her. You only need glance at the photo we took and see the look on his face to understand that.

And I know he would have felt the same about Boo. After all, in a very different way, they have so much in common. Both have been through things no one should have to go through. And both seem to have (and to inspire in others) an appreciation for life that is deeply instructive and infectious.

In the dark days of the NICU, of wondering whether Boo would die, or of contemplating the potential problems that lay ahead for him and for us, I often thought of Grandad and what he would say to me if he could. ‘You’ll be alright, chick,’ he would have said. ‘You’re tough as old boots and you’ll both make me proud whatever happens.’ He’s right. Because I’m his granddaughter. And I had a bloody good teacher in him.

What Katie Did

Katie Price. Not two words that I thought I would type in anything I ever published. But then I never thought I’d be typing cerebral palsy, infantile spasms or chromosome 22. And now I am writing a blog post with all those words in, because this is the strange world I now inhabit. A world in which words/people/conditions that I never thought would be relevant to me rule many of my waking thoughts.

And now I can say that I have something in common with Katie Price. My students (who have been known to drop her name into classes in the hopes I would go off on one of my pre-programmed responses to their arguments that feminism has no relevance to them) would find this amusing. But we do. We both have a disabled son. And she is a great advocate for her son, as I aspire to be for mine. And…

…there the similarities end. It’s not the different books we read or try to write or our different looks. No, it’s like this: I couldn’t do what Katie did. I  couldn’t turn my back on a community of people – the parents of children with additional needs – by describing them as too ‘lazy’ or sometimes too ‘ignorant’ to champion their children’s needs and access much needed resources as Ms Price did in a recent interview on Radio 5 Live (you can read about it here).

Now, my partner is a journalist and a very good one. So I know that journalists ask questions with a view to eliciting certain kinds of answers. And I also know that journos can intentionally or unwittingly twist people’s words so that they convey rather different meanings from those originally intended. And lastly, I understand that Ms Price wasn’t taking to task all parents of SEN kids. But enough with the caveats.

Of all people, those of us with disabled children know that labels stick and can be toxic. We know that words can be weapons that can be easily picked up by others and can cause grievous harm to our loved ones. And of all times, to say now, in 2013, when disabled people are facing more prejudice, more financial hardship and more difficulty in accessing services than ever before, to target the parents of disabled kids as unfit for purpose (as some would describe our children) is frankly beyond belief.

If I were a football fan (I’m not), I’d call it an own goal. Instead I will just call it irresponsible.

I could respond directly to the charges that Ms Price implicitly levels at me by referring to my recent ‘Day in the Life’ post where you might see what one of my lazy days looked like. I could respond to charges of ignorance by pointing out that I have three degrees, I am an active University researcher and, despite working in the airy-fairy humanities, have now read so many scientific research papers that I have three times been mistaken for a neuroscientist by neurologists.

I don’t say that because I am proud or boastful. I say it to point out that it doesn’t matter at all. I am well-informed partly because I am lucky enough to work at a university where I have access to world-class research at the click of a button and my log in and password. And you know what? All my research, all those 6 figure grant applications I’ve written and filling in a measly 72 page DLA form was a Herculean effort for which I felt woefully unprepared.

I have spent days reading PCT and NICE protocols and  Boo has still been subject to sub-standard care. He still had to spend months and months and months on waiting lists without the equipment he so desperately needs to prevent life-altering conditions on top of his cerebral palsy. And this is not because I have been lazy or am ignorant of what to do. It’s because in my county we have an especially convoluted two-strand OT service which is greatly overstretched.

10 months on one of the many ‘crucial’ waiting lists in which he is listed as a priority and his specialist seating has only just now been ordered. And what made this finally happen? My knowledge of and research into what he was entitled to? No. My weeks of undignified crying on the phone? No. They just provoked sympathetic cries and hugs from healthcare professionals who said they were desperate to help Boo but couldn’t yet.

You know what did it? And I am not proud of this, by the way… you know what made the difference? It wasn’t the letters from healthcare professionals advising of the health risks to Boo if we weren’t assessed quickly, or my promises that I would try to somehow self-fund whatever he needed if they would only assess him so we knew precisely what it was he needed. It was (and maybe I have more in common than Katie Price than I thought, here) the knowledge that Boo’s Dad is a journalist who works regularly for two national newspapers.

My industry and all my research made no difference whatsoever. The accident of Boo’s Dad’s association with the media was the thing that did it and got us an appointment the next working day on a morning when we were told the wait would be many more months for him to be seen and assessed.

And this is the reality of SEN care in this country. There are lots of good stories out there and I am a great advocate for the NHS, to whom I owe my son’s life and my daughter’s. But I can see clearly that some PCTs, LEAs, social services and other relevant government offices are riven with problems. I see daily that joined-up thinking and services are little more than political jargon in many areas and that the national picture of what is available to whom and at what point has very little national about it at all. Systemic and regional inequalities exist despite our determination as parents to advocate for our kids.

I am no politician and have no idea where to begin addressing these issues systemically. But I believe passionately that we will never have a hope of addressing them if those of us in this community (and we might not like it or have asked to be part of the SEN community, but we are in it for better or worse) stick together, stick up for one another and look after the interests of all our kids and their individual needs.

And those of us who have a platform to do this publicly, whether in a small blog like this, or in a radio interview on a popular, national station, or on a globally watched reality TV show have a duty to do so industriously, knowledgeably and responsibly.

I have written this post for the peaceful blog protest being staged over at the fabulous Downs Side Up. Please take time to read the many wonderful posts linked up there.

Good work, Sissyboo

This week we had Sissyboo’s parents evening. Since she started in year 1, back in September, things have not been easy for her. Most kids in her class seem to have found the jump from Reception to Year 1 a mild culture shock, but the transition has been felt more keenly than it should have because their teacher has been on a phased return after sick leave. As someone who did the same earlier this year, I have no feelings but sympathy for the teacher, although I can see it unsettled the children quite a bit.

You see, the teacher couldn’t get to know the children very well. And in the first few weeks of term, Sissyboo was clearly on the brunt of a few misconceptions that I was anxious to clear up. But when I finally managed to talk to the teacher (much harrassed by other concerned parents who thought their child needed go up two reading levels or maths groups) my anxieties just increased. I didn’t recognise the little girl she was talking about. Either she didn’t know Sissyboo at all, or Sissyboo was behaving very differently there than at home. Either way, I was worried. I explained my anxieties and tried to make as clear as possible that I didn’t doubt her word or professional judgement, but the disconnect troubled me, especially given that Sissyboo was claiming stomach aches every day and not wanting to go to a school that has been something of a haven for her since her brother was a few months old.

And my heart sank. Because I knew that as much as this was about disruption at school, it was about disruption at home. About the stress we’ve been under waiting for Boo’s test results to confirm the best case scenario of cerebral palsy or, worst case scenario, something that could kill him. (If you don’t read the blog regularly, it was the best case scenario.) I tried to conceal my mounting anxiety as we waited for results that, as it turned out, had sat unopened on a consultant’s desk for weeks. I tried not to show the strain of the formal complaints we launched against our PCT over Boo’s place on waiting lists. But she’s not daft. She knew. She felt our pain and a huge dollop of her own. And it troubled her deeply. And then, we got the diagnosis and she learned there was a phrase that helped explained her brother’s difficulties, that he wouldn’t grow out of them. And our house started look more and more like an extension of the hospital.

I mentioned in passing to the teacher the pressures at home that I thought were troubling Sissyboo, and to my horror, she claimed not to know any of it. The handover that was supposed to take place with the Reception teacher last year evidently hadn’t taken place. She had no idea. Telling her was a good thing. I asked her not to treat Sissyboo any differently because of what she now knew, and I’m sure she had no intention of doing so anyway, but it allowed her teacher to see her differently. To help make sense of her. And that’s not easy. Because most of the times, she is all laughter, and sunshine and craziness. And then she wakes sobbing in the middle of the night. Or, as happened only today, you say ‘I need to talk to you about something’ – the fact she’d left her sweet wrapper on the floor (again) rather than in the bin – and she will turn ashen and say ‘is Boo going to die?’

She is very good at putting on a good front. She is her mother’s daughter, after all. But sometimes the front falls. Fronts do.

It has not been an easy half term for her. A new teacher. A new curriculum. Her brother. The stresses at home. Her best friend being moved on to a private school. But she is coming out the other side. We have talked lots about her brother’s CP and try as much as we can to build her confidence and make her feel that everything will be OK. The teacher has seen her differently. She has learned that Sissyboo is not cripplingly shy, but sometimes anxious and unsettled.

And so when I went to parents evening I was pleased to hear how happy and confident she is, something that has become very apparent in the last 3 weeks. Her reading, writing and maths has all accelerated as a result, but this appointment wasn’t about academic achievement for me. The bigger achievement here is how Sissyboo has worked through a difficult time with her usual combination of compassion and craziness. She deals with the difficulties of our situation in a more mature way than most adults could or would.

Her teacher finished by saying, ‘You know, she talks about her brother a lot at school. More than most children talk about siblings. But I have never heard her say anything negative. Everything she says about him and home is full of love and fun. She is a wonderful girl.’ And, I added, ‘her brother is very lucky’. ‘I can see that’, she said. So am I.

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