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…

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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.

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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.

 

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World Cerebral Palsy Day 2013

mrboosmum:

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.

Originally posted on Premmeditations :

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…

View original 1,441 more words

The hardest juggling act of all

And for my next trick…

Yep: like all parents, I spend a lot of time juggling. Heck, I spend a lot of time blogging about juggling. And guilt. Let’s not forget the guilt. And of course, these things are intimately related. A huge chunk of the knotty mass of guilt I feel on a pretty much daily basis originates in my feeling that I am a poor juggler. That I don’t get the balance right in my respective responsibilities as Mum, carer, advocate for Boo, partner, employee, and colleague. That I let people down on a regular basis, including myself, but especially my kids.

If you read this blog regularly, you would be forgive for thinking that the hardest circle to square is the working mum/parent-carer one. I wrestle with it daily and the moment it is pretty all consuming. But it’s not the hardest juggle of all. Not by a long way.

The hardest is being Mum to two children, one of whom has extreme and complex additional needs and one who does not.

Sissyboo is just about the best sister anyone could have. Boo is incredibly (there just isn’t a word hyperbolic enough to describe this) lucky to have her in his life. I watch their relationship develop with intense pride and amazement. Her life was as much turned upside down by Boo’s early arrival and all that came with it as anyone else’s and all of this happened in the year she started school.

Cerebral palsy doesn’t faze her. In fact, she is very knowledgeable about it. She has started to question the world around her, the policies and prejudices that affect her little brother’s life. She instinctively, now, notes the accessibility (of often otherwise) of places we visit and clocks lifts and accessible toilets sometimes before I do on trips out. She has the best stare for non-blue badge holders who park in disabled parking spaces because they are in a hurry that I have ever seen. She helps with Boo’s therapies. She makes him sticker charts and buys him presents with her pocket money entirely off her own bat if he hits a new inchstone. She reads to him and plays with him. She forgives him if his wayward arms whack her round the face accidentally or if he pulls her hair.

And mostly, she just loves him. Unconditionally. As I do her.

She may not realise it at the moment, but she has given up a lot for him. Time with me, days out, days without worry. And I worry so much about her missing out.

You see, Boo’s needs will always be the most immediate. He can’t do a thing (except watch TV) without adult support. And she is nearly seven. So when it comes to the two hours before bed what do I do? Shoehorn in as much therapy as possible for Boo? Goodness knows he needs it. And then what to do when Sissyboo asks me to do Hama beads with her? What about when she needs help with her homework and he is screaming because he is uncomfortable and needs stretching or otherwise stimulating because he can’t just get up and walk to the toys he wants to play with.

Sissyboo does after school clubs most days. This is partly because I work, but it is also so I can fit a bit more therapy time into Boo’s day as he doesn’t get enough 1:1 support at nursery. And I don’t feel good about paying someone else to look after my daughter so I can do therapy with my son. Not at all.

Nor do I feel totally OK with all days out having to be geared up around her brother’s needs. Of course, I want him to be as happy as possible and like to be prepared wherever we go, but I hate, for her sake, that so many days out turn out to be about what we can and can’t do with Boo. The only way to avoid this is to split our family of 4 into 2 families of 2, not always practical, and not at all what any of us wants.

We used to have a volunteer from the wonderful Homestart come and help us out for 2 hours a week. Boo was well looked after and I had 2 hours a week with my lovely girl. We used to do crafts or make cakes or watch a movie. That ended 10 months ago now and we both still miss it enormously. I try to take her swimming on my own once a week (like I take her brother on his own once a week too, although she has to come watch). I let her stay up a bit late on Fridays and Saturdays and help me make dinner and do crafts. I plan odd days out with just her. These are so much fun.

But I’m still not used to this. I wish I could get the balance right. I wish I could be sure I was doing enough to support her through school and just being nearly 7. But I can’t. When push comes to shove, Boo often has to come first. He can’t help it. It’s just the way it is. I just hope she grows up not minding. I hope she grows up knowing how amazing she is and how very, very proud I am of her.

If you have any tips on how to juggle the needs of siblings with different needs, I would love to hear from you. This one really has me stumped.

 

Good News Friday #72-75

Honestly, I can’t keep up lately. There is so much I want to tell you about, good and annoying, but I just don’t know where the time is going lately. Well I do – appointments and work – but I am in denial. So it’s a good time to pause for thought. A time to remind myself, it isn’t all chaos here in Boo land. And the good stuff keeps coming.

So, here are some good news highlights:

1) Running: I ran a half marathon last weekend. I know I don’t post pics of me or identifiable pics of the kids on here, but those few of you who have met me in real life can testify to the fact that I don’t look like a runner. (In fact, I am now on a post-run diet.) And I struggle to call myself a runner. Running is what other people do. But last weekend, after months of following the most skeletal half marathon training I could and still have a reasonable chance of crossing the finish line, I did it. In 2 hours 12 on a hilly course. I am thrilled. Running is so important to me. I can’t say I like running itself that much, but I like the enforced me time, I like pushing myself in recognition of the challenges Boo faces every day, and mostly, I like raising money for good causes. Which I did. I am so grateful.

2) Statementing: Because of a not so happy accident I regaled on the blog’s Facebook page, I found out that Boo is going to be issued with a statement. We hope to have it next week. Of course, we can’t know what it will say and the battles may only just beginning, but our hope is that it supports him better and for longer in his nursery setting. It has been quite a journey so far, I hope the road ahead isn’t too long.

3) Boo: I have about 5 Small Steps Amazing Achievements posts I have to write to tell you about the new things Boo is doing. I don’t want to steal the thunder of the posts I want to write, but don’t set the bar too high. It’s not like he’s learned to walk, or sit, or roll. But you know what? Those inchstones keep coming lately. Little surprises, things I’d almost given up on are starting to happen. Odd words I wondered if I’d ever hear, gestures, small acts that are a very big deal in our world. Dare I say it, Boo’s on a bit of a roll. And it’s a fun ride to be on, let me tell you.

I hope you have lots of good news to share. Do let us know what’s going on in your world. We love to hear from you!