Monthly Archives: January 2015

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.

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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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