Monthly Archives: November 2013

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.


Vulnerability Comes in All Shapes and Sizes: Supporting Home-Start’s Snowflake Appeal


If you have read this blog before, you might know that my family has benefited greatly from the help and support of Home-start, a service which, for forty years, has been providing volunteers to spend a few hours of the week in the home of a family with young children to help ease them through difficult times.

I was first introduced to Home-start by a Health Visitor last January. I was a mess. Just when I was coming to terms with the likelihood that Boo had cerebral palsy and would likely struggle to attain most of his motor milestones, we were hit by the bombshell of infantile spasms. By early January, the seizures had stopped, but the anxiety (of worrying every time that he went off to sleep that he would wake to seize, that he would regress and lose those few  milestones he had met, that life would never be OK ever again) was excruciating. It was made worse by the steroids that stopped the seizures. My lovely, good-tempered boy turned into a hyper-agitated, screaming machine, with an insatiable appetite and acute insomnia. If I could 3 hours sleep in a day (never in one chunk, mind you) for the next 3 months, I considered myself lucky. We could barely leave the house because of Boo’s vulnerability to infection. I lost lots of weight. I looked grey. I would cry if someone made eye contact with me.

I was severely depressed and had acute anxiety and panic attacks. I was advised to phone a local NHS mental health charity for counselling. The kind lady I spoke to said that the waiting list for treatment was about 6 months. She sounded more distressed on my behalf than I was, but thought my needs were too acute to be met by their service. I was too ill for them to be able to help me, I realised with a sadness so deep that I could barely speak. I managed to summon enough voice to say that I understood, got off the phone and cried for two hours straight. How could I help my kids when I was such a wreck?

My GP phoned our health visitor in disbelief that we had never been assigned one (we had but she was on long-term sick leave since Boo had come home from hospital). We were told there was a three month wait to see one regularly, but someone who was about to change jobs had one slot in the next month and could come and see me for a one-off visit.

She did and we filled out a CAF form, which is woefully out of date now and has never been used for anything. But the one good thing that did come out of the meeting was a referral to Home-start. I had never heard of them. They have done more to help us as a family than anyone has done in the past 19 months.

Since April, our wonderful volunteer has come round for 3 hours a week to give me respite and support. She has enabled me to catch up on medical paperwork; to do laundry; she has come with me to difficult appointments (including a very nerve-wracking EEG). She has given me friendship and head space. She has helped to give me back what I have retrieved of my sanity.

She has helped Boo, by playing with him at times when through the exhaustion and anxiety all I could do was cry when I looked at him. And yes, I am ashamed to type that sentence. More recently, she has looked after Boo so that I can spend a couple of hours one night a week with Sissyboo. Because, like her brother, like me, she too is vulnerable.

She adores Boo in a way I had never imagined would be possible. She is full of fun and laughs. But she wakes up at night sometimes crying because she is worried her little brother will never play football or because silly Mummy has said she has to take him to a routine appointment tomorrow and she is worried it will be one of those appointment when Mummy and her brother go into hospital and won’t be let out for a week or so. Having the luxury of just two hours a week alone with my daughter has made such a difference. I felt that I have got Sissyboo back. It is a little glimpse of normal that is all too rare in our lives.

Our time with Home-start will sadly have to come to an end soon, as my flexible working arrangement becomes slightly less flexible from January. And I feel both nervous and extremely sad about this. But I also feel incredibly grateful.

Home-start has helped all three of us immeasurably. They reached out to us at a time when no one else did. They advised me to apply for DLA for Boo. They put me in touch of a carers support service that vetted our application. They put me in touch with local SEN groups. They have helped ease my transition back to work. I could go on, but to quantify their help is frankly impossible.

Let me put it this way: I am not the same person I was in January. Neither is Boo, nor is his sister. And Home-start has played a large part in helping us on our way on this journey.

Vulnerability comes in all shapes and sizes. I never thought I would live in a vulnerable family. We are a dual income household with our own house, good friends and a supportive, if sadly very distant, group of relatives. But we are vulnerable. Others face different and sometimes much more acute challenges than we do. Home-start recognises that all families and children are unique and that many are sorely tested. They don’t discriminate against certain types of problem; nor do they privilege one above another.

That is why they have started their fabulous Snowflake Appeal for vulnerable children, each as different, beautiful and fragile as the next. If you read the magazine Good Housekeeping, you may have already read about this important appeal to help raise fund to support the invaluable work Home-start does in its interview with one of its supporters, Kirstie Allsop. If not, please visit Home-start’s website and see how you and your children might be able to help those affected by physical or mental health problems, financial hardship, bereavement or addiction.

Financially, times are hard, and never more so than in the run up to Christmas. But if you can afford to make a one-off donation to Home-start, or even a small monthly direct debit, then I would urge you to consider it. Or perhaps you just have £1 to spare for a snowflake pin badge.

If nothing else, please make just a few minutes to find out about the good work that Home-start does. Home-start is a relatively small charity but it has made an enormous impact on the lives of the one million children and families it has helped since it was set up forty years ago. Please help us to ensure that it can continue to do so. Thank you.

Good News Friday #30



Good news! It’s Friday and I am writing Good News Friday after weeks of life, skewed perspective and other things getting in the way. But like I said earlier in the week on the blog, GNF – seeking out my good news out of life’s chaos and, just as importantly, hearing yours – matters hugely to me and it is here to stay. I hope…

So what’s going down in Boo Town this week?
Well first of all it’s half-term. Now this has caused a few headaches, I must admit. Because both The Grumposaur and I work, sorting out a holiday rota has been a bit challenging, but between odd bits of holiday taken, The Grumposaur’s parents and a Halloween workshop, we’ve got there even now that poor Boo is ill with a fever. And we’ve had fun! We dressed up and made masks out of paper plates. We carved pumpkins and made soup. We made cakes.
And I stole a few hours on Monday to spend with Sissyboo on her own while Boo was at nursery having the one-to-one attention and therapy he needs. Moments like these, where Sissyboo is the number one priority are rare, precious and I love them, even though I miss Boo. And when I took Boo to his audiology and physio appointments the next day she went to a safari park with her Dad. It’s been wonderful to be able to give her the time she deserves.
Speaking of appointments, Boo’s back-to-back appointments on Tuesday went pretty well. I was desperately hoping audiology would sign him off. But then I’ve been hoping that for a year. You see, for all my worries about Boo (worried, me? Never), I just don’t worry about his hearing. He can hear. If you stand down one end of a long room and utter his name he turns and smiles. Not very scientific, I grant you, but persuasive enough to me.
But ever since he failed his newborn hearing test in his right ear in the NICU (5 weeks before his due date) we get called in 
to have things checked over every few months. I’m glad they are so diligent and wish all the people Boo saw could be so assiduous. But we know his hearing in his left ear is normal, that overall he can hear down to the lowest frequencies. We also know that he still has fluid in his right ear, though, and his eardrum is always a little pink and despit the fact that his cochlear function (when tested without the middle ear) is excellent, his hearing may not be perfect in that ear even though overall it is good enough to have no impact on his development. And this appointment confirmed this all over again. The question is whether he will need a grommet in his right ear at some point, but I hope not. I want him to be able to continue swimming as it is so therapeutically beneficial to him in terms of managing his tone and acquiring gross motor skills. But as far as I’m concerned, no more news on the ear front is good news even if it’s not great news.
Then we went straight to physio. Now, as you’ll know if you read this blog regularly, I love our physiotherapist. She is brilliant at her job and at various points in the shambles of Boo’s care she has gone our her way to do everyone else’s and go into bat for him. But our last physio appointment was not fun. Instead of smiles and clapping there were exchanged glances and frowns. Boo seemed to be going backwards, particularly with his sitting. I knew that, of course, but I was hoping she’s spend that appointment telling me I was wrong.
She didn’t. There was talk of lycra garments, of him never sitting independently, something we’d never discussed before. But she did come up with a list of other exercises and some aids for me to source and buy if I could find/afford them. It took ages to track things down in this country in the right sizes without breaking the bank,  but with some help from ToughLittleCookies, who really knows all things SEN equipment related, I ordered them. They didn’t come in time for the last appointment, but we persevered with the exercises and nursery put in a concerted effort too.
The result: Back. On. Track.  I suspect Boo was recovering from the effects of a growth spurt and that had thrown him off, but the exercises won’t have hurt and who cares why he dipped. He’s back on track. He spent the entire session making like the performing seal he is usually keen not to emulate and showing his best efforts at sitting (OK when self propped, struggles when he uses his arms), rolling (he can go front to back and side to front, it’s that pesky back to side we’re still working on) and weight bearing in standing and kneeling. You could feel the relief in the air. Smiles all round!
We’re still contemplating lycra garments because of Boo’s low trunk tone but we want to see how his body responds to that kind of sensory feedback before applying for funding to see if we could get them. So the plan was to put a tubigrip bandage sock round his middle and see what happened. Well, our hospital is rationing tubigrip, apparently, and the only stuff the physio could find was so small that we had to abandon attempts to get him into it when things turned into the corset lacing scene from Gone With The Wind. So I may be sourcing tubigrip now too! But fiddle-dee-dee and heigh-ho! A good appointment.
And lastly in good news, things are finally coming together around Boo’s equipment needs. I’ve said already, I think, that the PCT accepted the OT’s request to fund Boo a Jenx Bee seat at home. That’s been on order for 3 weeks, so hopefully it’ll be here in another 4-5. We just heard this week that the LEA is funding one for nursery, too! Such a relief. I may have danced around the kitchen. a bit. Postural support is so vital for Boo’s ongoing development, it reduces the risk of lifelong complications of his CP, like scoliosis (curvature of the spine) and will greatly aid him to do what he wants to do most: interact with his peers. We might have both by Christmas. Who says Santa doesn’t exist? 
And because SEN equipment is like that train of proverbial buses, Boo’s Otter bath seat arrived this week too and a very nice man fitted a couple of hand rails to our stairs for us. These aids are for us (or rather for our creaking backs) rather than for Boo. And we are grateful. The bath seat is a particular bonus. It’s not a total hit with Boo. It’s so big that he can’t bath with his sister any more (which he’s not happy about) and so high off the bath floor, even on the lowest setting that our water bills (and the last one nearly made me spit out my precious espresso over the dining room table) will go through the roof if we put in enough water to cover him (which is a shame as he loves the water), but we need it more than him. And as I am increasingly aware, we need to look after ourselves to care for him properly.
So 9 months after it was first mooted we needed all this stuff, it’s starting to fall into place. It’s been a long wait and quite a battle (understatement of the year) but the benefits are clear and we’re glad to be able to enjoy them. 
Happy half term! Now, over to you. If you have a nugget of good news, please feel free to share it below.