Monthly Archives: October 2014

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.


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.

Fighting Talk

On Saturday, like every Saturday, I took Boo swimming. It is one of the highlights of my week. He’s such a water baby and to see the incredible joy he has doing things in the water that he can’t do on dry land is just … well … so amazing words fail me. But this Saturday, I wasn’t so excited.

You see we were with a different group of kids and parents for the new class term. Boo is at the limits of what he can do in this mainstream class, which now involves diving off the side and running on a float. So we can’t yet move any further forward. I suspect we’re at the end of the line of these lessons. I mean, Boo can’t even sit on the side safely. But his teacher is brill and we adapt things. We decided to repeat the level we have just done with a new set of parents. Boo wouldn’t care he was repeating and it would be good for him.

But I was dreading it. There would be the looks from parents who didn’t yet know him. The explaining to do about why my little boy can’t stand. The questions to answer. The ‘what’s wrong with hims’.

We had some curious, if well meaning, looks throughout the class, but it went fine. As we were getting ourselves dry afterwards a parent asked if we were new to the class (clearly her way into finding out what Boo was all about, I think). She was nice and I just explained why were we repeating the level. I told her that Boo loved swimming and since there’s no hydro in our area and no special needs classes for kids his age locally we were sticking with mainstream lessons as long as we could get away with it.

The another Mum joined in. There was something about the way she spoke to me that made me understand that she lived in or on the periphery of our special needs world. You can always tell. She was confident in our company; she looked at Boo unfazed. Either she knew a child with additional needs well or worked with them. I just knew. Thirty seconds later all was revealed when she said she was an Educational Psychologist (or EP to those of us who live in this world of SEN acronyms). She was infuriated that Boo doesn’t get hydro. In her area, just over the border, she explained, Boo would.

And then she tried to spur me on. ‘This is just wrong. But it is about Boo’s needs you know. If the NHS doesn’t fund hydro in your area, then you should fight them. If your physio supports you, get her to write on your behalf to force them to provide access to a private pool. It’s discrimination. Honestly, the parents who fight the hardest and shout the loudest get the most for their kids.’

If I’d had a pound for every time someone had said this to me since Boo’s birth…

Of course I’ve looked into ways of accessing hydrotherapy. And of course his physio supports us and would testify to the benefits for Boo. But he furthest I’ve gotten in pursuing this is to be given the number of a private physio who charges an eye watering per hour fee for hydro once a month (and we pay a small fortune for swim lessons now, let me tell you).

I thanked the EP for her advice and support and explained that I would get onto it, but that we were fighting two other big battles at the moment (statementing and social services over house adaptations) so it wasn’t at the top of the list. She understood. She knew how hard it was. ‘But keep fighting’, she said.

I left feeling grateful for the kindness of strangers.

And sad. Really, really sad. I tried to work out why and think I now have.

You see, I realise that I have had it with the fighting talk. Absolutely totally and utterly had it. Don’t get me wrong, we have had to fight for virtually everything for Boo: to get onto waiting lists; to get Boo off them to actually see someone; for virtually every piece of equipment he has, including his Bee seat (that fight nearly broke me) and his adapted buggy; to get him 1:1 support in nursery; even down to getting a bloody pair of Piedro boots. I could go on.

Of course, we’re not alone in this. You need only look at the special needs equipment online forums to see how hard people have to try and how much money they have to save to buy even the basics in our children’s lives. These forums are totally great – I use them a lot myself and have bought lots of essential kit for Boo from them second hand. But they are also incredibly frustrating and occasionally downright uncivil.

Here’s a common scenario. Parent A at the end of their tether waiting for something they have been told is essential for their child’s health and happiness asks if anyone has one to sell on said forum. People jump in and say no but express sympathy with Parent A for the ridiculousness of their predicament. Then Parent B jumps in and points out, in the spirit of helpfulness, that Social Services or their PCT should provide this equipment free of charge. Of course Parent A knows this and has already exhausted all lines of enquiry. Parent A explains this. Then Parent C comes in and says Parent A should fight harder. They should make them get it for their child. Parent A either answers back that their LA or PCT doesn’t work like that or silently crumbles.

Because you know what? There is NOTHING national about the National Health Service. And you cannot emphasise the LOCAL in Local Authority enough.

Now I know everyone is trying to be helpful, but I wonder if we are, really. Of course, we are parents. Of course, we would do anything for our kids. Heck, in my darkest moments with Boo, when we didn’t know if he would survive or not, I begged any god that would listen to let me die if he would only live. Of course, we will fight for them. But is this fighting talk helpful?

I remember talking about something similar (although in other ways very different) with a friend who had a close relative in the advanced stages of cancer. She hated the fighting talk too. Her relative would not win this particular fight. That didn’t mean she wasn’t the most poised and determined of women. That she didn’t cope with her appalling situation with a courage I don’t know that I could ever possess.

Here’s the truth: the language of fighting turns us into winners and losers, because that’s how fights go. This cannot be right. Surely, we are in this together.

What if you can’t persuade the LA to support your child in nursery? What if you can’t get them to buy your child Piedro boots? Are you a bad parent? Is it just that you haven’t fought as hard as everyone else? Of course not!

And you know what really gets me? What really, really gets me? It’s that we have all internalised this language of fighting so much, become so embattled in our special needs world that we accept it. This is as true for me as anyone else. My last post about our statementing debacle was called ‘Let Battle Commence’.

Today I want to look at things differently. Today I want to ask: what is so wrong with this world that simply tending to the need of some of society’s most vulnerable people has become a battleground?

The minute we start using the language of fights and battles we become part of the problem, turning our lives into a survival of the fittest (for fittest read: most vocal, most persuasive, most legally minded, most litigious, most desperate) parents for the sake of our kids. This cannot be right. Can it?

But I fear it cannot be undone either. I wrote this post because I feel I’m done with fighting (I’ve always preferred the more American sounding word advocating anyway). Because I am battle weary. But I can’t let Boo down. I have to press on and charge ahead. And the minute I stop writing this post, I have to write a covering letter to our Local Authority about Boo’s draft statement, which will quote case law and the Equalities Act and which will be laden with fighting talk.

And you know what? I hate it. I wish things were different. I wish I knew what to do about it. I suppose the only thing we can do is make sure that our battles with systems don’t force us to battle with other parents like ourselves.

Each battle for every one of our kids has to been as a battle for them all. Otherwise, what price victory?

Making a draft statement: let battle commence

And so, finally, it arrived. The draft statement. The piece of paper I have been looking for on the doormat for a week is here. I got back from work at 7 last night and it was on my desk waiting for me.

I knew I didn’t have time to read it properly, but I just had to know had we got more 1:1 for Boo. Had we got what he needs? I was prepared for it not to have as much as we’d like, but I expected more. Everyone involved in his care and at his nursery knows that this is what he needs.

But of course, we didn’t get what he needs. What we got instead was a copy and pasted, poorly constructed document that is so drafty you can probably feel the gale blowing even if you are reading this in Scotland. (I am in the South East in a LA authority which shall, for now, remain nameless, although that will change at some point, I’m sure.) There is, in fact, no mention of quantified 1:1 support anywhere in Boo’s draft statement although the phrase is littered in the appendices that health professionals wrote.

The draft statement commits the LA to nothing. Boo’s needs, many and complex as they are, are mostly documented in part 2, but provision is not matched to these needs and is only quantified once. Once! Apparently, he needs 6 OT visits and one review. A year? A month? A term? Can you not see what my 6-year-old could? That this is important information. That this sentence of the statement is utterly meaningless without a specified timeframe.

I then look closer. There is no mention of flat-level access. Boo is a child with no indepdendent mobility who will be a wheelchair user (as documented in the statement) and in the facilities section of the document there is no mention of flat-level access or to an accessible changing area/toilet. No mention, as several appendices make clear, that he cannot feed or drink on his own. That his drinking, especially, has to be carefully supervised?

Who wrote this statement? This is the worst cut and paste job in history. You know the story about monkey with typewriters, who, given long enough, could write the complete works of Shakespeare. Apparently the same isn’t true of this particular statement writer.

So I phoned his case worker. A very nice, competent professional. She explained why the lack of quantification might be there: because it isn’t in the reports completed by the professionals (they, incidentlly, are actually not asked to quantify it in those terms, as two have pointed out to me today); or because the LA has in mind a specialist setting for Boo (one I know none of the healthcare professionals involved in Boo’s care or we feel is suitable for him) where therapy is delivered on site (although actually, it still should be quantified even if they ahev that setting in mind, you know lovely LA).

And then came the worst news of all. I was also told categorically that we will never get more than 15 hours 1:1 support for our son until he is 5. I was told, somewhat condescendingly, that we had started this process rather early. I in turn reminded her that statements and new EHCP start from 0. It’s clear what the LA thinks: I need to stop work to look after my son. He needs to be in nursery the bare mininum of time. Never mind the huge benefits (social, developmental, cognitive) to him being in an educational setting. Never mind that we know children, 3 of them very well, in 3 other LAs in the South East who have complex disabilities (2 with CP) and in in mainstream nursery who get 26 hours of teaching assistant support via a statement so that their children can access the EYFS curriculum. That’s not how our LA does it, apparently.

I hate the phrase postcode lottery. I hate the reality even more.

And so now we enter the negotation phase. We have to write the statement for them. Do their job for them. We have to take all the info they forgot to cut and paste in the appendices and add it in (cause you know, we are tripping over time as parents of a disabled child). We have to quantify things for them. And they will consider our recommendations and judging by the conversation with the case worker, they will surely reject them.

We are headed for tribunal. I know it. I have recommendations for excellent solicitors with proven track records, but this will cost us more than £10,000. I know there are legal aid options. I also don’t know any that have been successful.

We are trapped, locked into a battle with the place we live. I wish we didn’t live there. I wish we didn’t live in the LA with such an appalling reputation when it comes to SEN provision. What can we do? Move? Leave my job? Lose our home? I feel trapped.

I haven’t slept properly in days because Boo isn’t sleeping either at the moment. I am so overstretched at work that I cannot cope. I am typing this in my office in floods of tears, hoping no colleague knocks on my door. I can see depression or worse beckoning me. I am going to crash. Just at the time I most need to help Boo. I can’t crash. Not until we’ve got him what he needs, at least.

I knew this would happen, but it doesn’t make it any easier to accept. I have never wished Boo was different. But right now I wish that almost everything about our lives was, most of all where we live.

You are crippling us local authority. You are destroying a family, our health and our happiness. And most of all, you are failing in your responsibility for a young, vulnerable child. I hope you can sleep easily at night.

I know I can’t.

I am not Superwoman

It’s 1.30 am. I am sat in a pitch black bedroom hoping Boo, who woke 90 minutes ago, 20 minutes after I had finished work and come to bed, will fall back asleep soon. He woke himself coughing as he has a bad cold. He can’t self settle. If he wakes we have to sit with him or else all hell breaks loose. I would bring him into our bed so I could sleep a bit, but he has already woken his sister and she is in there where I should be. She has school tomorrow. She needs her rest.

And we have work. Tomorrow we are working around no less than 3 appointments: SALT, a long overdue OT home visit and a flu jab appointment which I hope they will let him have. And I hope this cold won’t be the start of something awful, as it sometimes is. I hope he won’t get too ill. And selfishly, I hope The Grumposaur and I still get to go away on Friday for a special anniversary trip that has been 6 months in the making. Sod’s bloody law.

It’s all in a day and night’s work for us. There is nothing unusual about tonight, tomorrow and this week (except the planned weekend). It’s what life is like – always. The worry. The work.

Sometimes people get a glimpse of it. Odd fed up or embattled Facebook updates. Corridor conversations at work. People are kind. They say I look fabulous. I don’t. I have bags under my eyes. I’m pale. I need to lose a stone in weight. But they’re being nice. I’ll take it. They tell me they don’t know how we cope. How I’m Superwoman. I can’t take that.

There is nothing super about me. I am tired. Really tired. I am wishing Boo would sleep. In the morning I will feel awful until the third coffee kicks in. I will be bad tempered when Sissyboo won’t get out the door to go to school. I will hate myself afterwards. I will drink more coffee to the point I get a terrible headache. I will forget to eat lunch or will eat enough lunch to last me until breakfast the next day. Could go either way. I will forget things. Some might be quite important.

I will tell people I’m fine, although it’s a lie. I will look to the world like I am coping while I am crying inside.

There is nothing super about me. Survival is an instinct. Not a super power.

Big steps, amazing achievements

I haven’t managed to link up to Small Steps Amazing Achievements for a few weeks. This has happened before. Usually it’s because there haven’t been any inchstones to write home (or a blog post) about. This time round is because I have so little time. Life is crazy busy at the moment, and I am struggling to keep up the blog, and struggling in other ways because I am unable to keep up the blog. But today I have a rare, spare 15 minutes and a bunch of inchstones to tell you about. Here’s just one…


Yesterday was World Cerebral Palsy Awareness Day. Boo and I wore green and I reblogged a post where I try to explain much of what I have come to learn about CP over the past 2 years. But the biggest and most fun bit of awareness raising we did was accidental.

It was sports day in Boo’s room at nursery yesterday. No tie in with World CP Day was intended. When I saw the poster announcing the event a month ago my heart sank. Horrible memories of a party I took Boo to recently, that ended up not being the soft play we thought but a bootcamp style obstacle course he couldn’t participate in at all filled my head. I felt glad I was working that day. That I wouldn’t be able to get back for work in time for the sports day. I wouldn’t have to make excuses for why we couldn’t participate. I wouldn’t have to feel the hurt of seeing lots of kids do things Boo might never be able to do.

But as I left nursery that day, the room manager asked me if I was coming and before I had time to make my excuses reassured me that the whole event had been set up with Boo in mind. She wondered if I could do all the events with him in his Upsee, which they hadn’t seen him use.

What could I say? The Grumposaur and I made special arrangements at work to be there and Boo and I had a couple of practice walks in the garden in the Upsee. Sissyboo and a friend pleaded to come watch and cheer on Boo, too.

The minute I put him in his Upsee. Boo started screaming with delight. As we waited for the games to start, we walked slowly around the playground as he squealed and said ‘yeah’ and ‘go’. He hasn’t been that excited even on Christmas Day. And we realised, this was the first time in the year he’s been at nursery where he could access the playground on his own terms. Where he could access it upright, rather than being wheeled in a chair or standing frame.

He was seeing the world differently.


But you know what was best of all? Others were seeing him differently. His carers talked about how grown up and tall he looked. His friends kicked balls to him and came up to talk to him. He looked just like them. They saw him as a little boy, not a little boy who can’t do what they can.

When the games started, the surprises just kept coming. I was a bit worried that we might trip or stumble. We had’t practised much in the last few weeks because Boo’s been getting used to a new walker, which works in a completely different way to the Upsee, of course.

Boo has always liked the Upsee and initiated some steps, but he has needed encouragement and lots of support. Yesterday was completely different.

I was not helping him move, he was taking me along for the ride. Every step was initiated by him. Forwards and to the sides. And each pull up of his heel was emphatic. He was stepping like a giant. He clearly felt like one.

And with each step came more squeals of delight. As we did the egg and spoon or three- (in our case four-) legged races he said ‘go’, ‘go’, ‘go’ all the way to the end. He joined in every game and worked so hard while his Dad, sister and sister’s best friend cheered his name loudly.

I choked back tears of happiness, while Boo only cried when we took him out of the Upsee at the end of 40 minutes of racing in it. ‘More’, he said plaintively. He didn’t want it to be over.

It was a very special moment, indeed. And I can’t think of a better way of spreading awareness of CP and the amazing potential and characters children with CP have than what Boo did yesterday.

I am so grateful for Leckey’s Fireflyfriends for the Upsee  and for making Boo’s participation in something every child should have an opportunity to enjoy possible.  And mostly, I am just really proud of Boo for his determination and beautiful personality.



World Cerebral Palsy Day 2013

I can’t believe it ‘a World Cerebral Palsy Awareness Palsy Day today. Here is a post I wrote last year for that day. A year one, we’re still learning, but it has become part of our lives now. If only others could accept it as we do.


Wednesday 2 October 2013 is a big day for us. Boo will be exactly 18 months old (actual, not corrected), it will be 6 months to the day since I wrote my very first blog post, and it’s World Cerebral Palsy Day.

World Cerebral Palsy Day is a great initiative. I’m a big fan of awareness days and weeks. I’ve written in support of several (World Meningitis Day, Volunteers Week, Carers Week, National Breastfeeding Week) since starting this blog and World Prematurity Day in November is looming large in my mind at present.

But at the same time, I worry that awareness days and weeks have their limits. I worry that for each of those to whom advocates manage to speak, there are many others who don’t hear or listen, or who do, but when the days or weeks have past, lose sight of…

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