Things have gotten on top of me lately. Things have been pretty relentless. We still haven’t heard a dickie bird from the LA in response to our MPs letter which supports our request for them to reconsider their funding cap on support for Boo in nursery. Neither have we heard from his nursery whether they will accept our proposal to let us pay for the 1:1 support he needs so that I can keep my job and we can keep our home. The wait is excruciating.

And on top of that, Boo got ill last week. A virus. A nasty one, but just a virus. His sleep (usually bad) has been appalling. His temper (usually buoyant) has been awful. My back – not great at the moment – is extremely painful, while Boo’s ability to do things (always challenged but determined) became practically non-existent as his tone in his trunk decreased even further making his torso do its best beanbag impression. It has been so hard to see his frustration. So many of the memories and fears of the NICU flood back. It’s hard to remember even though we never really forgot in the first place.

People are kind. They keep asking me how I am doing. For those who know me best this is a kind of code: Are you getting depressed? Do you need to see your GP? Most, however, mean well but for them ‘how are you doing’ really means: ‘I know things are tough and I’m sorry but let’s make small talk so I don’t have to feel uncomfortable hearing how crappy your life is’.

Both groups get the same answer: ‘things are hard – so much is on the line at the moment – but we’re doing fine’. That’s true. That doesn’t mean I am not finding things really difficult at times. But it’s true.

And I have to keep pulling my socks up and not letting the green eyed monster come and make things worse by feeding off life’s petty envies. Like when people I don’t know on a local parents forum I am a member of on Facebook seek advice for the latest ‘crisis point’ in their lives: an otherwise healthy child teething for the first time; a two-year-old who has slept through for 21 months suddenly waking once a night.

Part of me screams inside ‘you don’t know you’re born’. Then I start to like myself a little less. I remember the pre-Boo me, Sissyboo’s Mum. A new parent who also got stressed about teething and felt aggrieved over the kinds of disrupted nights I would dream of if only Boo would sleep long enough for me to. Everyone has their problems. And things that no longer make the radar in our home any more feel bad to others. I get that. I am not such a different person that I can’t remember that any more.

And I also know something else: we are lucky. Unbelievably lucky.

Lucky, that I gave birth out of area right near a level 3 NICU that was the best place for Boo to be born. That he survived probable meningitis, even if its legacy is cerebral palsy. We were unbelievably lucky that  he developed infantile spasms out of area, near where my folks live, and where there is one of the best children’s hospitals in the world where some of the country’s leading experts on a rare form of epilepsy are based. They stopped these catastrophic seizures quickly. What would have happened if they hadn’t doesn’t bear thinking about.

We are lucky that he lived. That he came home. I know this.

That’s why I say ‘so much is on the line at the moment’ rather than everything. Because awful as things will be for me and for us if our lives are turned upside down (again) by the latest episode in our prematurity and special needs journey, we have Boo and each other.

Over the weekend I learned that a little boy we know only a little through Boo’s regular therapy suddenly and totally unexpectedly died. The sadness and fear overwhelmed me in an instant. I hugged Boo and his sister a little more often and a little tighter as I was so viscerally affected by this tragedy for a loving and strong family who have fought for years for the best life for their brave little boy.

Plenty of people have life easier than we do. I don’t feel bad about saying that any more. But plenty of people experience unimaginable loss and heartbreak of a kind I selfishly hope never to experience. However hard life is because of the challenges involved in Boo’s care I would deal with them 20 times over to know he is in our lives.

Known unknowns

When people tell me they don’t know how I cope with the challenges of our life I always take the trouble to point out to them that Boo is not the challenge. Neither cerebral palsy nor prematurity is even the problem. It’s all that came with his early birth and life-long disabilities. The people. The processes.

The uncertainties over his future are probably hardest of all to deal with, but you learn to live with that. I never thought I’d say that, but you do. I have. I think it’s because I can see the progress he’s making. He is on his own developmental curve, but he is developing into a lovely, bright little boy.

No: it’s the other uncertainties that come with Boo’s disabilities that are the unbearable ones. Your reliance upon individuals, services, administrations and bureaucracies that frequently fail or demonstrate levels of incompetence that are not just astonishing because frequent and because no one ever gets taken to task for them as they would in any right-thinking organisation, but because the consequences of people not getting this right can be profoundly damaging to Boo’s body and state of health. They don’t do my mental health much good either, let me tell you.

Some individuals we have been forced to rely on for advice and support have had appalling bedside manners (‘we don’t use the term vegetable any more, but…’) or made terrible mistakes, one leading to his hospitalisation. Others, happily the majority, have been caring and competent, even brilliant, but they have constantly been let down by the systems they are forced to use. Currently Boo’s physio (the very best of the healthcare professionals involved in his life) is pursuing a failure in duty of care notice about one service’s treatment of Boo at her own instigation, not because we asked her to. The fact that such action is commonplace and affects so many of the families we know makes me want to weep.

Until now the only things that have held us together through the catalogue of problems over getting ‘essential’ equipment and services for Boo (for which we, like so many other families, have had sometimes to wait well over a year) are our waning sense of humour, our determination to fight back and the fact that our home life and routine are fairly stable.

And now even those things are in jeopardy. Our LA is illegally sticking to its guns about the level of support it will give Boo in nursery (15 hours a week because of his age and not enough to cover his time there so I can work) and the onus rests with us to prove in court that they are wrong in taking this position without attending to his level of need and how long it actually takes him to access 15 hours of education, not for them to have to prove that they are right.

This will cost us money. Even if I can psych myself up to defend our case in court to save costs (and I am so beleaguered at the moment, I just don’t think I can) we will need to get a series of expensive private reports drawn up, even though all of those already provided by NHS and LA employees say what Boo needs them to to prove our case. If we got a solicitor, a much better option, we are looking at many thousands of pounds.

Given that we may end up in a Tribunal again about schools in 2 years time, we can’t afford this. More to the point, I would rather the money that we spend supporting Boo gets spent directly on him, not on people who make a living out of the fact that he is disabled.

And so, I can see things very clearly now. When people talk about the challenges in our lives I will be more emphatic. The big challenge in our life is not CP, administrative incompetence, systemic failure, or the illegality or ignorance of the Local Authority. No: It is money.

No one cares about Boo or about us. All anyone cares about is their budget.

So if it’s money people want, they can have it. I am currently begging (I am not proud of it, but I am – it is humiliating) Boo’s nursery to take more money off us (money we can only just afford) to buy him the 1:1 the LA won’t without a fight so I can continue to work. So we can have stability in our life. So Boo can access an educational and social environment that is aiding his development hugely. So that we can keep our home. So we don’t have to pay the council back for adaptations to be made to our home in the next few weeks if we are forced to move out of area into a home that we can afford on one income.

To be fair, the nursery is looking into this possibility. They are looking into seeing if they can help us meet the costs too. But the nursery is part of a national, expensive, private chain. (Your childcare options contract significantly when your child is disabled.) The nursery manager has asked their bosses to arbitrate on this matter. That was nearly 2 months ago. They still haven’t made up their mind. We are totally in their hands. I have no control over their decision at all.

So, in 3 months my life might be very much like it is now. Or it might be very different. I may have handed in my resignation and our home might be on the market. We might be trying to find an elusive accessible property Boo can live in and we can afford on a single salary that is near a decent school for Boo’s sister who will be forced to leave her friends. We might be facing up to having to set up again with a new bunch of healthcare and education professionals for Boo in a new area. Every time I think about it, I feel dreadfully sick.

These known unknowns utterly terrify me. I can’t sleep well and am developing migraines, which I have never suffered from before. I feel so shaken by not knowing what our lives will look like in 3 months time. Whether all the stuff that keeps us together (our home, our friends, our routine) will be taken away from us.

It is devastating. And no one who can do anything about it cares. Not one little bit.

Three little words

It’s been ever such a long time since I have linked up to the fabulous Small Steps Amazing Achievements or the life-enhancing weekend link up over at Love that Max. But that’s not for want of inchstones, here. There have been plenty.

No: the problem has been me. I won’t lie to you. I am really struggling at the moment. Really struggling. Hence the blog radio silence. The weight of appointments and admin and the huge hurdles in front of us at the moment around education, work and the many milestones that it seems ever less likely Boo will ever meet feels totally overwhelming. I try to be positive. And in the day-to-day when I am with Boo and playing with him I don’t feel so bad. Because I just enjoy him and being with him.

But in quiet moments (the only moments I can steal to blog in) I feel totally at sea and worried I am drowning. I don’t know how to swim to shore any more. It is horribly disconcerting.

It’s hard to summon up the wherewithal to write about Boo’s achievements, no matter how proud I am of them. And I am. Because for every inchstone met, there are a dozen milestones receding into the distance. Just two minutes ago I put in an application for mobility DLA (Disability Living Allowance) for Boo. I can honestly say it is one of the most heartbreaking documents that I have ever had to write. The catalogue of professionals and list of all the things he cannot do is just too much to contemplate.

But what I know deep down, even if it is hard to summon up this feeling in these rare, dark quiet stolen moments is that the feelings of desperation I feel on his (and if I’m being totally honest, mine and his father’s and sister’s) parts make it all the more important to chronicle and celebrate his achievements.

And this has to be the biggest of the past few months. Speech.

Now don’t get too excited and think he’s reciting the Gettysburg Address all of a sudden. Or even a single sentence. But Boo’s speech is still coming on a bundle. Words he had before – ‘Mum’, ‘Dad’, ‘up’ (meaning: pick me or else, Mum), ‘go’ (meaning: why are you so blinking slow at everything, Mum?), ‘yeah’ and his current favourite ‘no’ – are so much more distinct. And he has got a pretty impressive range of other phonic sounds now, most of which he will say on sight of the relevant jolly phonic flashcard. We are still struggling with s, z, v, z and h but we hope they will come with time.

And he has all of his vowel sounds now: the last one ‘ee’ arrived out of nowhere one day just before Christmas. He still struggles to put these sounds together. He can say ‘p’ and ‘l’ and ‘ee’, for example, but if you ask him to say please he says ‘eeeeeeeee’. But it’s a mighty strong start nevertheless.

It’s all about putting the building blocks in place and seeing where we can get with them. Building up from sounds to single words. He has new ones every week or so at the moment. A new addition is ‘ewlp’ meaning ‘help’. My personal favourite, because it is always said with a cheeky smile on his face, is ‘I duck’ meaning ‘I’m stuck’, which is code for I’m a toddler get me out of here! I can’t wait to hear what comes next! Once you have words, it’s all about putting them together of course. And Boo is trying out that fun game: ‘Mum, go’, ‘Mum, up’ are the soundtrack to my life. And there are some even more impressive strings of words coming along. The other day I was singing the title music to Something Special (to myself, not Boo, you everyone does that, right?) and I got as far as ‘Hello, Hello’ and was about to launch into ‘how are you?’ when I heard Boo at the other end of the dining room say ‘ow ar oooooo?’ at which point he burst into hysterics at his own amazingness. I squealed so loudly Sissyboo said, ‘Do we need to phone the hospital Mummy?’ Where did that come from?

But best of all is the way that Boo is mimicking speech patterns. Boo does everything in his own way. He isn’t going to follow the whole, phonics, words, sentences, conversation logical progression any more than he is going to roll, sit, stand, walk, run. No, he may only have 20-30 or so words, and have lots of sounds he cannot say at all yet, but he is still trying to replicate the patterns of words and phrases he hears. So if you say ‘garden’ to him he will repeat: ‘ah’ ‘ah’. Two syllables. Two sounds. If you say ‘that was good’, he might say ‘a ah ooo’. It’s very sweet.

But nothing is sweeter than the three little words he has been saying for a few months now. Words he has heard an awful lot since he was born so very, very early: ‘Ah. Uv. Ooo’ (‘I love you’). The first time he said it, I cried. The first time he said ‘Ah. Uv. Ooo. Mum’,

I cried. Of course, I knew he loved me, his dad and his sister before he told us. One of the many things Boo has taught me is how we communicate in so many other ways than through speech and writing. No: I cried for a whole bunch of other reasons. Because he had hit his mark and progressed with his speech at a time when many physical milestones seem more remote than ever. Because it was such a physical effort to arrange his body in such a way as to produce these sounds. Because when he was only 2 weeks corrected age an utterly unfeeling prematurity paediatrician told me my child would likely never speak at all.

In my dimmer moments now I feel like I am back in that awful appointment over 2 and a half years ago. And so I replay Boo’s words in my head and realise that he has made a future for himself that is so much brighter than anyone predicted. And for that, I am very grateful.

Playing, Playpak Style

Well it’s been and gone again, hasn’t it? And I bet like us you were sat there last night talking about how quickly Christmas and New Year passed again this year. I honestly don’t know where the time has gone, even though some of the sleepless evenings over the past two weeks (who am I kidding? two years!) with Boo have seemed to last an eternity. Yep: sleeping is still not Boo’s strong suit. No matter. He has others.

One of the things that makes it go so fast is just how much we try to ram in. You see, I love where we live, a nice town in a nice part of the world that we moved to so that both of us could have vaguely bearable commutes in opposite directions. But the downside is that we are nowhere near any of our respective families and some of our oldest friends. We try to compensate by travelling up and down the country between Christmas and New Year. It always sounds barmy when I explain to others what we have planned. But it has always worked in the past.

And then came Boo.

Boo has had periods of travelling really badly. At the moment, he’s pretty good. So what’s the problem you ask?

Space. Our little boy. Our premmie takes up a heck of a lot of room wherever he is. As I type this at my desk in the dining room, I am wedged in by the therapy bench behind me and a therapy roll under my feet. Rather than the walk in wine fridge I feel I both need and deserve, our kitchen has a standing frame and walker, and our dining room has a Jenx seating system and a Wizzybug wedged next to a sofa. It just about fits.

But what on earth do you do when you leave home overnight or for a few days. None of this equipment can come with us when we go anywhere. Even if any of it were more portable, Boo’s Bug wheelchair buggy takes up more than a third of our estate car boot. But while I can just about persuade myself to leave at least some therapy behind when we go away, I can’t bring myself to leave Boo’s independence or the postural support he so desperately needs.

All I can say, again, is thank goodness for Firefly. You may already have read my post on the much talked about Upsee, which Boo uses for weight bearing and supported stepping when we are out and about or in sports days! That squidges into a soft, compact tote bag, so that gets slung in the roof box whenever we head anywhere. But that doesn’t help with one of our biggest problems for Boo. Seating.

Although Boo is more than two and a half now, he still can’t sit independently. I wish I didn’t have to write that sentence, but it’s true. I don’t know if he ever will. He needs ever less support, but still enough to require adult supervision at all times. This is a literal pain for our backs and no small annoyance to poor Boo, who wants to be Mr Independent.

So all our Christmases came at once this year when we heard about and got one of Firefly’s newest products, the Playpak. It’s a much more portable (you carry it over your shoulder like a large but light satchel) and cheaper (hooray!) version of the Leckey Squiggles mat, for those of you who have tried one of those. Attached by Velcro so strong it would have stopped Dorothy’s house going up in that twister, you can attach the series of u-shaped supports, wedges, straps and bendable but sturdy rolls the Playpak comes with in many different ways to aid your child to meet their individual needs. You can rearrange the rolls and wedges to facilitate supported sitting, or prone therapy (tummy time), side lying and all the things you learn about very quickly when you have a child with physical disabilities. Almost all of the floor-based part of Boo’s physio programme can be done on the mat and I’ve got some new ideas from looking at the online therapy programme the company offers.

We haven’t fully got to grips with all of the possible benefits of the system yet (it has been Christmas, after all, and we were under strict instructions from Boo’s physio to kick back a bit over the festive period). But it is already a fabulous addition to our therapy and play kit. If we actually stop having so much fun in it, I might be able to remember to snap a pic of Boo in it to show you how much he likes it.

For now, though, I’m just so glad that this Christmas the Playpak gave Boo a little bit of independence we could take with us wherever he went. Priceless. Thanks, Father Christmas!

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Merry Christmas

Hello. It’s me. You’d be forgiven for forgetting who on earth I am or what this little blog is all about.

There’s no point lying to you guys – you who know more about me than anyone else. The last few months have been pretty tough. I nearly lost my way. I’m not quite sure I’ve found my way back yet, if I’m honest, but I’m pretty sure I’m headed in the right direction now.

Christmas is a crazy fun and crazy busy time of year here. But it also gives time to reflect and breathe. There hasn’t been enough of that round here lately. Once again, I won’t tell lies. Each year that passes brings many regrets and multiple challenges and sadnesses. Milestones I hoped we’d nail by this Christmas but haven’t. Worries over education, walking and Boo’s clicking hips. But I am also immensely proud and pleased with all that he and we have achieved. More on those achievements too, I promise.

And there have been other reasons to celebrate too. This blog is one of them. I have blogged much less than I wanted to in the second half of the year. I just haven’t had the time or heart. I miss it enormously. But you have stuck with me and offered a virtual ear or shoulder and words of wisdom and encouragement when needed. This makes me more grateful than I can express.

Blogging has opened up my world to include an enormous number of incredibly lovely people. You know who you are. Thank you for helping ease me towards 2015 and all it will bring.

I hope you all have a completely fabulous Christmas and that I’ll see more of you in 2015!



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.