Beating a Retreat

So, I have gone off the radar for a bit. Tried to get some headspace. Tried to work things out. I felt defeated. I couldn’t take the stress any more. It seemed like everything – NHS, Social Services and of course the blooming Local Authority – was trying to break us. They nearly did. Still might.

Nothing was going right. Too much was at stake. Everyone had an opinion on what we should do. No one could do anything, would take any action but me. Too much pressure. Too much at stake. Whatever I did, I realised would be wrong in someone’s eyes, including my own.

So, defeated I retreated. I took myself away from Twitter and the blog – my lifelines – and tried to ignore all the incursions on my sanity by pretending they weren’t happening.

The upshot? Well, nothing is resolved. All skirmishes are still active. But I have plans and options. I still don’t know how we will resolve things, but I have a clear sense that somehow we will. Few solutions are without cost, mostly financial but also emotional. This SEN world is an expensive one. But we have to settle things.

Boo deserves this. I deserve this. Sometimes you have to step away and admit defeat. Sometimes you have to realise that survival, rather than heroism, is the best that can be achieved. And we will.

Writing a Statement: An Open Letter to our Local Authority

Dear Local Authority

Thank you for issuing Boo’s final statement the day before your deadline. Thank you for taking an entire month to accept all but one of the tracked changes in the statement I wrote for him, in which I pointed out evidence you’d missed and solicited more where you felt it was needed. It only took you a second to click on that Word button that said ‘accept all changes’ and now Boo has a statement that has a wonderfully detailed and accurate assessment of his needs and matched provision in parts 2 and 3.

Thank you for letting me do your job for you. Oh no, no, no: don’t thank me. It was an honour. Honestly. And taking two and a half days off work to do this so that you didn’t have to, which I then had to make up at evenings and weekends, was a doddle. No worries.

My pleasure.

But why oh why did you miss out the most important sentence of all? The one that accumulated the several pages of 1:1 provision now rightly stipulated in part 3. Why did you not quantify the hours of 1:1 he needs each week in total? Is it because  you know this means you are committed to nothing at all? Is it because it renders the rest of the statement entirely meaningless?

A friend texted me to ask if you are very stupid or very strategic. I don’t know. I honestly don’t know.

So now we have to go to court to get them to ask you the same question. Well done, LA.  You stay classy.

I think it’s a brilliant idea, actually. Every time I don’t do my job at work properly why don’t I insist that my colleagues or other stakeholders take me to court to prove it? And then I needn’t face up to not doing something I am meant to do for five months at a time. Terrific idea. I will propose it at the next policy and planning meeting I attend.

But in all seriousness, because I, for one, have not forgotten what a serious matter this really is, I wonder if you would act differently if you knew the true cost of all this. No: not those beans you are counting, Madam, save them for the panto at the local rep. No: I mean the very real, the very painful, psychic costs of your incompetence? Of your failing in your duty of care to a vulnerable child. You may know this already, of course, or know and not care. But I’ll feel better if I tell you about this. So here goes.

This is how you make us feel.

You address us with the mock courtesy of a 1930s schoolmistress talking to the parents of a badly behaved schoolboy on a parents evening. The social niceties are there, but you aren’t very good at hiding the fact that you are talking down to us, as if we are badly behaved or stupid. Oh and while I’m at it, do get my title right, please LA officials. My daughter is the only Miss in my family and at 7 years old she will likely only put up with the diminutive for another couple of years herself.

You seek to infantilise us, feigning knowledge and regaling facts that are simply untrue. Do you think we won’t have done our homework? Do you think you can get away with it? Or have you been relating these spurious facts for so long that you now genuinely believe they are true? Who knows…

But you know, I’m 38 and big and ugly and all that. I can take condescension. I know what to do with it. Right back at ya!

So why do I finish each and every exchange with you wanting to sob my heart out? Why do I get off the phone shaking? Your incompetence? Your only partial truth telling?

No: it’s because you treat my boy, all our children, like a really nasty little problem. A deep inconvenience. A drain on resources. A  scrounger. Never mind that this little problem and all the other little problems like him mean you have a job. You treat each of our attempts at contact with you (and there have only been 4 in 7 months) as a minor outrage. How dare we try to speak to you. How dare we remind you that we are human.

And you have the audacity to sign off every email to us with a mission statement declaring the LA’s vision of creating ‘opportunities’ for young disabled people to ‘contribute and achieve more than they thought possible’. (Yes: you know which Local Authority you are, don’t you …?) Forgive me, but these words – because they are just words – stick in my throat.

Everything Boo has achieved to date has been in spite of you and we will continue to support him while you just put more and more impediments in the way. Frankly, you don’t know the meaning of the word vision or at least you’ve forgotten it as it’s gotten buried under a pile of budget sheets.

And you know, I get the financial stuff. I do. But you can’t even be honest about why you are failing our children. You don’t say: we can’t afford it. You say: we can’t do this because this form isn’t filled in to our satisfaction, or the OT didn’t use the right kind of headed note paper, or because he’s 2, or because you should give up work and live (euphemism alert) on carer’s allowance.

Local Authority, you leave us bereft, angry, embattled and sad. But worst of all, every day you drag your heels our son loses out. Some vision, Local Authority. Some vision.

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

mrboosmum:

I wrote this post a year ago for World Prematurity Day 2013. If anything, it seems even more true to me now than it was then.

Originally posted on Premmeditations :

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…

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Coming together

Blogging is my sanity saver. I blog to connect with others and as therapy. I blog to work through my irrational guilt over Boo’s premature birth and disabilities.

But sometimes blogging compounds the sense of guilt I can never give up on. Partly it’s because I feel guilty stealing moments of the day to do this when I could be doing more work, making flashcards, sourcing equipment, or reading about surgeries and therapies. Partly it’s because I feel I dump too much here. This is, frankly, the only place you get the real me. The warts and all how-I-feel-about-life me. It’s a place where I can say the things I can’t, won’t or don’t say elsewhere and, inevitably, that means it can be balanced more in favour of the stresses, the battles, the stuff that stops me sleeping at night. The me who has to fend off depression and anxiety.

And that me, I worry, from this blog’s readers point of view, must seem terribly embattled. That me, I worry, might seem like someone who whines and complains a lot. Well, I guess I do and am these things. But outside the blog that me is tempered by my sense of pride in Boo and his amazing big sister, by my incredible capacity for self-censorship, by the fact that I want and often am an extremely happy person.

And that me is not separate from special needs parents me. Special needs parent me finds joys in life that I couldn’t have dreamed of before having Boo. I know this will sound horribly trite, but it’s true: I have an appreciation for life, for the amazing capacity of human beings and their bodies and minds that I just didn’t have pre-Boo. I have also met the most wonderful children and parents in the past 2 years, people who should really write in to the OED and tell them what hope, tenacity and determination really mean.

One thing I particularly worry about is that people who read this blog might think reading all my posts about battles for equipment and services and therapies is that I am not grateful for all we have: the stuff without which our difficult lives would be impossible and the interventions that have already made such a difference to what Boo’s life and what it will be like in the future.

And today I was reminded about how incredibly grateful I am for many of the professionals involved in Boo’s life. The people who care, love and hope for him alongside us. Because these people do exist.

A few moments ago, I was surrounded by three of them. I went into Boo’s nursery for a joint OT-physio-moving and handling appointment. Joint appointments are the holy grail of special needs life. They are like gold dust. Boy, do they make a difference. Joined up thinking. Linked services. If only they could happen more often.

Of course, I was really worried about the appointment beforehand. Nursery are clearly and understandably worried about managing their own health while looking after a largely non-independently mobile Boo. I knew pre-meeting conversations had included the words ‘hoist’ (not a bad thing, but Boo can do seated transfers so I wasn’t sure we need them… yet). I was worried it was going to be another ‘we love Boo, but it is a pain having him here’ conversation.

And I knew Boo would be far from his best in the appointment. We are now more than 2 weeks into Boo’s non-lycra suit period while they adjust it for growth. The difference between him in it and out of it is totally staggering. He is a different child. No aspect of his life (except his smile and even that is waning) is the same without it. He dribbles constantly and has a terrible rash. He can’t speak as well. His head control is compromised. He can no longer sit even for the few minutes he could manage before. He cannot use his walker or Whizzybug. This appointment was going to be tough.

I gave myself a good talking to before I went. His lovely physio said it was a good thing that moving and handling were seeing Boo at his worst as it would ensure maximum support. I smiled as my heart sank.

But the moving and handling advisor was a breath of fresh air. She looked at Boo. She watched him closely. She saw how he reacted to conversations around him. She could see he has great understanding. She listened to what we said he could do, even if he couldn’t achieve this easily without the lycra suit. I didn’t feel, as I often do, that I had to persuade her to see Boo as I do. She got him pegged in about 10 minutes.

No problem or issue that was discussed fazed her. She had solutions (practical and easy) to address each one. And she kept repeating the same sentiment. Boo is a bright child. He is motivated and wants to be as independent as possible. We need to use every opportunity to help him achieve that. There is no need for a hoist yet. He needed to be doing seated and active transfers throughout the day, each one of them helping to make him stronger and more in control of the world around him.

Few appointments I have been to in the last 2.5 years have been so positive (and there have been hundreds and hundreds of appointments, I kid you not, in that time). At one point as the three professionals talked amongst themselves while I played with Boo I had to tell myself not to cry. Not through the tiredness and frustration that often gets me down but in recognition that these three talented and caring women were talking not about what my little boy can’t do but all that he can and will. They talked about his determination and his many physical and mental strengths. And they had all come together to help him achieve that.

I can’t quite put into words the gratitude I felt in that moment. That people want to help. That people can see Boo as we do. That they don’t see obstacles but hurdles that can all be gotten over or around one way or another.

I couldn’t let this moment pass without recording it here. Partly because few days are like this and I can see many others in the future where I will need to remind myself of this one. And also because I want to tell all of you what I sometimes forget to say.

You know, Boo’s early arrival and complicated life since has taught me many things: humility; patience; that I have hidden reserves of energy and determination. It has also taught me gratitude for him, for those that helped him survive and continue to help him thrive. It’s a gratitude more profound than I ever thought it possible to feel and runs just as deep as any misplaced guilt I feel.

Frankenstein and other demons

I went out last week. Hang on, I’ll say that again. I went out! A night out to celebrate a good friend’s birthday with some other very good friends I see all too infrequently. I was driving so not drinking (probably for the best – you’ll see why), but I was out. After dark. People do this. I’d almost forgotten.

Friends and a film. What more can you ask for? And not just any film. We were going to see, very belatedly, Danny Boyle’s NT production of Frankenstein with Benedict Cumberbatch as the creature and Jonny Lee Miller as Frankenstein. Two actors I like a lot. A director I admire hugely. A novel I love and know backwards, forwards, and inside out. And good company to share popcorn with. What could go wrong?

People. People went wrong. And I haven’t felt right since.

The screening began with a very short documentary on the making of the production. Most people seemed uninterested in it and for most of it I was too busy dealing with texts from home about the location of grobags and sterilised syringes to take much notice.

But my ears pricked up suddenly when I heard Cumberbatch talking about stroke patients and watching as many videos as he could of their recovery to try to figure out how to convey the birth of Mary Shelley’s creature: a man who through the accident of his creation has a brain and a body that aren’t wired up as they should be.

I felt a hot stab of pain run through my chest as he spoke. He was talking about neurorehabilitation. He was talking about intensive physiotherapy. He was talking about the impact of neurological damage on gross and fine motor function. He said stroke survivors, I thought cerebral palsy. Did you know many people with CP had a stroke before, during or shortly after labour? Boo didn’t, but I knew that what Cumberbatch was trying to do with his creature would strike very close to home. I worried I wouldn’t be able to deal with it. I’m not sure I did.

He was going to be on stage what Boo is in life: a person not entirely in control of his own body. And he would be doing this in the context of a fictional world where he (nameless, and known only as the creature, an ogre or ugly man) is considered monstrous. And that would be hard for me to see.

That’s the point of course. And Cumberbatch spoke directly and eloquently about this in the brief documentary. He wanted to convey through this intensive research the profound physical and emotional vulnerability of this man. For my money, he did. Brilliantly.

If you’ve seen the show or the filmed version you won’t have forgotten the first 10 minutes or so. It is a scene that is unrecognisable from the book, in which the creature is galvanised and shunned by his creator in a heartbeat. This was different. Ten long, extraordinary minutes where the creature emerges from an artificial embryo and writhes, dystonically around the stage on his back, front and eventually on his legs, battling his body at every turn, its spasms and the natural patterns of movement that you and I learned to overcome in baby and toddlerhood. It was remarkable. I saw dystonia. I saw hyperextension. I saw movements, jolts and shakes that anyone who knows someone who lives with CP would recognise. It was extreme. It was one of the most viscerally affecting things I have ever seen. Boy he’d done his research and executed it extraordinarily.

It was supposed to be hard to watch, of course. And it was. Really, really hard. But for me it was hard in ways I bet it wasn’t for most of the people in the audience. I sat there digging my nails into my palms so that I didn’t cry. I didn’t know the two people sat next to me at all well. I couldn’t let them hear me cry. And I’m not sure they’d have understood why I was sobbing anyway. You see, I wasn’t choking back tears because of what I was seeing. It was what I heard that hurt.

Laughter. Lots of laughter.

Now, I’ve been somewhere like this before when I saw The Cripple of Inishmaan, starring Daniel Radcliffe, last year. That was both great and hard to watch, too. But that was a comedy. Frankenstein is not, nor did Boyle intend it to be. And people were laughing. Hard.

Now, you might say (and I can see the truth in this) that people were laughing at the creature because they felt uncomfortable. All those teenage girls in the audience who were there to see the man they know best as Sherlock probably did feel uncomfortable seeing their heartthrob look and behave physically so out of character. But they laughed also at a sight they clearly found humorous. A grown man moving around like an uncoordinated toddler.

I have never ever been so relieved to get to end of a scene as I was to get to the end of that one. I thought it would be OK after that. But if anything, it got worse. One of the hardest things to convey in any adaptation of Frankenstein must be the creature’s acquisition of language, which comes about rather improbably in the novel itself. This adaptation did things a bit differently from the novel and lost something as a result, but it worked well enough. And again Cumberbatch was just brilliant. His speech reminded me of Boo’s. The high tone he affected in his mouth and tongue made his speech sounds indistinct and child-like. The dissonance between his manner of speech and its content (the creature can quote epic poetry and ancient philosophy) was supposed to startle the audience just like it does in the novel. But I can’t help but think it wasn’t supposed to make you laugh. And people did laugh at him. A lot.

Believe me, I do still have a sense of humour. I really do. But this was not funny. This was about that vulnerability spoken about in the documentary. About how the way that someone looks or sounds overrides what they know and who they are.

This creature was vulnerable not because some mad scientist made him wrongly. He was vulnerable because the world is full of people who are innocent or ignorant, personally insecure or prejudiced or just downright cruel.

If making audience members aware of their own complicity in these forms of prejudice was part of the point of Danny Boyle’s production then it was a point not lost on me. But I worry that those who needed to hear that message most might not have.

Because my work takes me into the past a lot, I often thank our lucky stars that Boo was born in the 2010s, with the wonders of modern medicine (without which we both would have died), modern technologies and disability legislation. But what Frankenstein showed me was that when it comes to prejudice, the past is still with very much with us.

Perhaps you will think I’m being unfair or high-handed. Perhaps you’ll think I’m overreacting. Maybe I am. All I can say is that this production of Frankenstein was as much a revelation to me as the novel was when I first read it at the age of 15. There were bits of the script that I thought were weak. There were bits left out of the original novel that I thought the play really needed to make full sense. But the performances, particularly Cumberbatch’s and Miller’s, were astonishing and worth all the accolades they got. The direction was superb and the play hit its mark.

But I left ever more convinced of something I see and feel every single day of Boo’s life. Physical and neurological difference don’t make people vulnerable. People make other people vulnerable. And people can be bloody horrible.

RSV and the Silly Season

mrboosmum:

For this week’s Throwback Thursday and the beginning of the month which sees us mark World Prematurity Day here’s a post about a subject very dear to my heart. RSV are three letters I hadn’t ever put together before’s birth, although I had likely had it and passed it on to others. This nasty virus has probably affected you and you barely knew it. But it could seriously harm vulnerable children like Boo. In December 2012, it put him back in hospital (where he caught it from, ironically) and nearly put him back on ventilation. And all because people don’t wash their hands properly or commit to basic hygiene. Please, please, read and share this post. Let’s try to prevent kids getting really sick this year by taking a few simple steps. It’s very easy. It’d be silly not to.

Originally posted on Premmeditations :

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It’s the silly season: Halloween, bonfire night and Christmas are all upon us. And with that comes about 1000 requests a day (more or less) from Sissyboo’s school for gifts, cakes, volunteering, costumes and … oh I can’t finish the sentence because I feel queasy now.

It’s also cold and flu season. More to the point for former premmies and medically compromised kids like Boo, it’s RSV season. Until March next year. That’s right people. Until March.

RSV… I’ve said before that after having Boo I entered by own private hell of acronyms. In the NICU (acronym #1) I had to learn about the dangers of NEC and CLD, the problems that can attend NG feeding and the TPN that can help to alleviate them. Then we experienced the horrors of IVHs and the CP and IS they led to.

When we finally got Boo home, though, the one acronym…

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Whizzing around in the Wizzybug

A lot of my posts recently have been about the various fires we’re trying to put out here in Boo land. The statementing debacle. The temporary halt put on our front access adaptations. The struggle to secure equipment. The last few months have been utterly exhausting. But there have been lots of good things going on, too. And today I’m finally getting round to telling you about one of the very best.

The Wizzybug. Is it a wheelchair? Is it the funkiest toy car you have ever seen? Is it just about one of the most fun and life enhancing things anyone has ever invented? The answer is yes to all of these things. Take a look and judge for yourself.

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I heard about the Wizzybug in the spring from my lovely friend in the know over at Tough Little Cookies. To be honest, it sounded too good to be true.

The Wizzybug is a paediatric powered chair for children between the ages of 18 months and around 5 (depending on growth) designed by the incredibly smart people at Designability in Bath.

The NHS generally doesn’t fund powered chairs for kids under 5. Boo has an adapted buggy from wheelchair services, but of course he can only go in this where we push him and at the age of 2.5 that’s not much fun. And frankly, it’s not very forward thinking either. I will never give up on Boo walking some of the time but, realistically, he will be a chair user for some if not all of the day for the rest of his life. The idea of putting him in a powered chair for the first time at the age of 5 seems nonsensical to me.

Everything we know about cerebral palsy tells us that early intervention in developing gross and fine motor skills is essential. For Boo to achieve anything like typical patterns of movement in his terribly stiff arms and slightly less stiff legs, we have to rewire his brain around the extensive damage he sustained shortly after birth. All his therapies are designed, through repetition and other means, to help lay down new neural pathways to help him achieve or get nearer to the kind of limb function you or I have. Putting a 5 year old who can’t control his arms properly into an electric chair at the age of 5, right when he is starting school, would be like putting  a 17 year old in a Le Mans car in kids’ playground. We can all see where that story would end.

So the Wizzybug seemed perfect for Boo. Something positive and fun we could start using now with a view to preparing him for the future.

But equipment is always a nightmare to get hold of. Everything takes forever to secure. You have to beg and plead to get things…

Not the Wizzybug. My friend sent me a link to their webpage which explained their charitable loan scheme. For a returnable bond of £200, and subject to our physio’s or OT’s support in the form of a letter, we could get a Wizzbug for Boo until he grew out of it. Like I said, too good to be true…

Except it isn’t.

We sent off the paperwork and within a matter of weeks were told our application was successful. Boo would be getting a Wizzybug. A few weeks later I went to Kidz South and he tried one out. He loved it and put a smile on everyone’s face, even the conference goers he was trying to run over with alarming enthusiasm.

Within a few months, Boo and I made the trip up to Bath to be fitted for the Wizzybug (or Ug-Ug as he calls it) and we brought it home.

I confess I was a bit nervous about the fitting before it happened. What if they didn’t think he was a suitable candidate once he got in it? What if he couldn’t use it?

I needn’t have worried. The meeting with Nina, an OT for Designability and Martin, one of its engineers, was terrific. And Boo had a ball. The Wizzybug supports Boo brilliantly. We have various bits of very supportive postural seating for Boo at home, much of which looks pretty industrial, so I was a bit sceptical that the Wizzybug could do all it needed to to keep the man with the marshmallow trunk upright. But it does. The harness is almost identical to the one on his buggy, the thoracic supports do their job, and the ankle restraints keep him in that 90/90/90 position we have become slightly obsessed with.

The main challenge for Boo is the joystick. And this is a big part of why we wanted the chair so much: to get him working on using one now as this is never going to be easy for him. For many children with CP who have reasonable to good hand and arm function, this would be a piece of cake. But for Boo who has really tight arms, which often contract before he is able to reach forward, it really isn’t. Martin and Nina spent a good 20 minutes looking at this, adjusting the angle of the joystick by moving the armrest and putting a ball joystick on rather than a stick. The challenges haven’t gone, but they have been significantly reduced.

Boo spent the entirety of the fitting whizzing round in circles (I am assured every child does this), squealing with delight and increasingly going forwards and backwards. I had tears in my eyes and a lump in my throat.

Independent movement. It’s what I want most in the world for Boo. Once upon a time I was fixed on achieving this through crawling and walking. Like I say, I haven’t given up on these things, but powered movement is just as exciting and liberating. The Wizzybug is starting to transform Boo’s experience of the world and it is a joy to see.

We left Bath after a very helpful demo on how the chair works, how to work the parental controls, how to dismantle and reassemble it for moving up and down stairs (it is heavy) and armed with lots of practical hints and tips. We left with me slightly worried I wouldn’t remember it all (I did – it’s really easy to use and the manuals tell you all you need to know anyway), but also on a real high and still in disbelief that the process had not only been so smooth but also completely enjoyable.

The Ug-ug now enjoys pride of place in our dining room, parked next to the sofa. The Boos have covered it in stickers (we were told we could) and we get it out 3-4 times a week. Because we have steps up to our front door and are still awaiting a much needed lift, we haven’t taken it outside yet as much as I’d have liked, but we’re getting there. And in any case, going round the living room is just as exciting for Boo.

For him, the joystick is still a challenge. He often doesn’t go where he wants to first or second or even fifth time round. But he is getting better at using it each and every time he tries it. His spatial awareness is improving. We are using simple commands like ‘push forward’ and ‘pull back’ and you can tell he knows what they mean. He is slowly learning to override the wappy signals (that’s totally a medical term) his brain sends him in order that he can do what he wants to do.

And that’s what the Wizzybug is all about. A glimpse of independence for a little boy whose life is otherwise largely dictated by his body and other people. Boo spends every minute in the Wizzybug hollering in delight and yelling ‘more’ or ‘go’. He gets to touch leaves in the park and books on the bookshelf in our living room. And one day, I hope he will be able to drive himself to the park with us following him. I can’t think of anything I want more in the world, actually.

So thank you, thank you, thank you, Designability for the Wizzybug and for their fundraisers who work so hard to make this life-changing product available and affordable for families like us. If you’d like to know more about the Wizzybug, or how you can support Designability’s work, please visit their website. And I promise to keep you all updated with Boo’s adventures in the amazing Ug-Ug.