Targets and other Torments

I’ve written on the blog many times before about the sense of weight and guilt that comes with Boo’s enormous long list of therapy goals. We have targets for physio, SALT, and OT not to mention our own private goals for Boo.

The lists are huge. Not metaphorically. I mean very literally. They are huge! They live on our fridge. Don’t use these as a diet aid, by the way. Seeing them on the fridge door makes me want to eat my body weight in cheese and double cream whenever I look at them.

I’m a list kind of person. I am what the self-help industry would call goal-oriented in my personal life. I have a long-term plan. I break it down into steps. I do my best to stick to the plan. And will usually flog myself until I have achieved what I set out to do.

But I can only help and encourage Boo. I can’t make his body do things it struggles with. And I have no interest in making his life any more difficult than it already is.

One of the biggest mental adjustments I have had to make since having Boo is letting go of goal-oriented me. For ages I tormented myself with the ‘will he walk’ question. No one knew, of course, whether this would happen or not, but most thought it unlikely based on the extent and nature of his brain damage. But then someone gave me a glimmer of hope. ‘If a child sits unaided by two there is a very good chance they will walk (maybe with a walking frame) by the time they are five.’

I wish they had never told me. Hope can very quickly turn into a stick to beat yourself with in this here life of ours.

I crippled my back trying to get Boo to sit before his second birthday. I was fixated on this happening before he hit 24 months uncorrected. When that was clearly not going to happen, I counted every darn day of his eleven weeks of prematurity and went for 24 months corrected. That date passed too.

Boo is now over 3. He still can’t sit unaided for more than a few seconds and cannot be left alone in this position. But we have just tried a new walker which we are hoping to buy and he steps in it in a way that makes the Grand Old Duke of York look like a complete amateur. Like all the amazing kids I have met since Boo’s birth, he just does things in his own way, on his own schedule. This is goal orientation Boo style and it is beautiful to watch.

There was a time when I felt the fading prospect of independent sitting with great sadness. Now I’ve adjusted. My sense of time is much more elastic now. I worry less about where Boo is relative to others. Frankly, that way madness lies and we celebrate each and every inchstone Boo meets whenever is the right time for him.

But of course, sometimes, I have a wobble and forget all I’ve learned. Children’s parties are a particular trigger (if he gets invited to them at all). Lugging Boo round a soft play for an hour the other week so he could join in while all the other kids ran hysterically like puffed out beetroots who had had a week’s sugar intake in a minute while their parents drank coffee and talked about the inequities of catchment areas was a weak point for me, and meant I couldn’t walk with a straight back for 48 hours. Sissyboo’s sports day last week was another.

And then there’s the biggy on the horizon. The milestone we can’t dodge or avoid. It will just have to be met by hook or by crook and whether he or we are ready or not.

School.

Next September Boo will start school. That may be 15 months from now. That may seem like an age. In special needs elastic time, though, it really isn’t. It really, really isn’t when you consider all the things that we would like to have set Boo up to be able to do before he starts school. There’s joystick control so he can (please, please let this happen) learn one day to move himself around. There’s potty training, so important for his dignity and for others’ perceptions of him (which will in turn, of course, affect him). There’s his ability to use an AAC device because he will never be able to write. And then there’s the four pages of A4 targets on the fridge.

It feels totally overwhelming. Impossible. Even with 15 months.

But it also feels imperative. We have to set him up as best we can. We just have to try our best to achieve these things with him. But we also have to let him be a toddler who can’t toddle, a little boy whose life can’t just be about goals, but has to be about living. About play. About fun.

I don’t know how to square this circle. I know that school doesn’t mean the therapy train stops (more’s the pity). I know that Boo will continue to learn (that’s the point of school, right?). I know (I hope) we have time to help him. But I also feel totally suffocated by the prospect of the next 15 months.

Have we made the right choice of school? Will we get that choice without a battle? Will our LA get their act together enough even to transition him to an EHCP before he gets there? Will we have done all we can to ensure he has the smoothest transition to school possible? Will it be enough?

I just don’t know. And that’s hard to deal with. Really hard.

A Toe in the Water

Hello again. It’s me. Seems I can’t keep away.

For a long time now, I have barely posted on the blog. I’ve had my reasons and even tried to explain most of them. But it was one thing to take a break from blogging because everything felt a bit much. To say to myself that I probably wouldn’t blog again, like a did a little over a month ago, was quite another, it turns out.

In the past six or seven weeks, I’ve been itching to get back to the blog and have had a lot of time to think about why blogging matters so much to me. Several things have become pretty clear to me in that time.

For one, blogging helps me keep track of Boo’s progress. This may sound odd. After all, every inchstone achieved by Boo is so hard won. Isolating an index finger to point is like completing an ultra-marathon in our house. And I will never forget how hard it was for him to learn that. But I can only tell you when he learned to do that because I wrote about in on the blog many months ago.

You can’t see glaciers moving, but if you only keep track of them you can see they do with a grace and poise that is truly miraculous. My blog did that for Boo’s development. I miss keeping track of him and losing sight of the bigger picture. It (by which I mean he) is really quite astonishing.

Blogging is also one of my main points of contact with other people in similar (or sometimes quite different) situations. I have learned so much about equipment, dealing with services, getting what’s needed, or just by commiserating with others over the past couple of years. Without the blog and that connection, I don’t exactly feel lost at sea, but I feel like my life preserver has a slow puncture. I don’t need to be rescued (yet) but I want enough support so that I can swim to safety on my own.

Another thing I have come to realise in the past few months, is that I care just too much to just be quiet and not speak out about the terrible injustices I see as health and support services are cut for vulnerable people. In the past two months I have had two healthcare professionals break down in front of me about their fears for their patients. Boo is one of these patients, of course. For now he is fine. But I am not confident he always will be. This terrifies me and I can’t just keep quiet about the things I see. Once the scales fall from your eyes, as they did from mine a little over three years ago, you have a responsibility to act on what you see.

But of course, the biggest thing I realised (if I had ever been in any doubt) is that I am, frankly, saner and happier when I inhabit this little corner of the blogosphere. Writing helps me think. Writing helps me make sense of how I feel. In the last few months I don’d mind telling you that I have had a bit of a wobble. Nothing major, but a wobble nonetheless. And the sway is getting a little bigger each day. I don’t know whether it’s the endless therapy goals set and not met. The struggles for several vital pieces of equipment we are struggling with. Maybe it’s my ever increasing back pain (which scares me not because I can’t put up with it, but because I am terrified that I will wake up one morning and not be able to pick him up that day).

Maybe it’s the significant birthday coming up next year. Or my worries about Boo’s sister, who is doing well in so many ways, but has also had a big wobble herself lately and I don’t know how to fix her. Maybe it’s that Sissyboo is changing schools this year and that Boo starts school next near. Facing up to the prospect of switching to EHCP, of battling to get him our choice of school, and of meeting the endless list of targets people think we should try to meet before he starts school is frankly completely overwhelming.

It’s all too much. Maybe this blog will help me make sense of things. It’s got to be worth a go, hasn’t it? So, I’m going to see if there’s still life in Premmeditations in the hopes that it can help me breathe again.

Holding post

You may have noticed that I have been pretty quiet of late. I’m not really a quiet sort of person. It doesn’t come naturally, I can tell you.

I never meant to have another blogging break and I don’t much like it. But there it is.

Various things have been conspiring against me blogging recently. Life has really gotten in the way, with all the dramas over Boos childcare – still not fully resolved but much better – and some really taxing battles with services, not to mention more work than it is feasible for any human being to do without all these additional pressures.

And then there’s the whole anonymous thing. I worry I must seem precious or even downright weird having a blogging alias. But it has always been really important to me. Frankly, I would hate my work colleagues knowing the ins and outs of my SEN-frazzled mind. I would hate them to see all of the many chinks in my armour. I try very hard to make it look all nice and shiny to them.

And I just couldn’t say what I really wanted to say – what I really feel, I mean – if I wrote under my own name. People I care about who find it hard enough dealing with their own responses to Boo’s challenges shouldn’t have to deal with my baggage as well. Worst of all, if people started to associate the blog with me then it might start to affect Boo. What if the services I moan about here found out who I was – he was? I suppose it might mean they actually did what they were supposed to do. But it might mean they do the exact opposite.

The reality is that as the parents of disabled children we live a life where we are only fully in charge of our own destinies. It pains me to say that, but it’s true. We rely on people doing their job, on going the extra mile, of being kindly disposed to us. Knowing how hard things are when people do and are these things, I have to tell you that I can’t bear the thought of what would happen if they didn’t and weren’t. I can’t do that to Boo. I just can’t.

The fact is that we were in such a dreadful situation a few months ago that I had to throw out every lifeline available. My job and our home were on the line. I wrote and tweeted like crazy as both blog me and the supposedly real me. I posted on forums, I phoned charities, I contacted people who offered to help. I started to lose my anonymity and privacy and while I can take it – it’s a problem of my creation after all – others might not want to, and Boo shouldn’t have to face the possible consequences of this.

So what with one thing and another, I feel I have to stop blogging for a while. My short hiatus has become a more permanent sabbatical. I can’t tell you how sad this makes me and what a strange sense of loss I feel writing this. I am always writing posts in my head. They are cluttering up my mind now and there is little space for anything else to go on in there. People have suggested that I write and don’t post, and I may do that, but blogging was only ever partly therapy for me. The sense of connection to others has really meant a good deal to me in the past three years. (The fact I haven’t even been able to write a post to tell you about Boo being 3 really makes me feel sad, too.)

But there we are. I tried to go cold turkey – no blog and no Twitter – when I realised I should probably stop blogging for a while and it felt pretty horrid. So I am going to continue to tweet to try and stay in touch with some of you lovely people who have helped me so much recently. That’s if you’ll have me, of course.

And I hope that I will be able to blog again some time soon. I feel I have lost a very important crutch in my life and I am rather unsteady without it. But as Boo has taught me time and time again, if you wobble, you just get right back up again until one day you wobble a bit less.

Let’s hope I take after my son.

Thank you and hope to be back again soon.

Mrboosmum

The Secret Life of a SEN Parent

At home, I am happy. Sure, sometimes I am frustrated. OK, often I am frustrated. Sometimes I am sad. But mostly, with my kids, I am happy. Happy with them. Happy for them. Happy because of them.

But when I am out and about … well, sometimes I am not happy. Often I am unhappy.

Unhappy because people stare. (Why are you feeding that child a drink on a spoon?) Unhappy because people judge. (You child is still in nappies?) Unhappy because they jump to conclusions and feel like sharing these sometimes. (Look at that selfish mother parking in a blue badge space. I bet she borrowed that off her nan because she can’t be bothered to walk 100 yards to get to the supermarket entrance. Seriously. That has been said to me.)

But mostly, as I realised this morning as I waited in line to go to an assembly in which Sissyboo was reciting poetry (proud parent alert!), I am unhappy because I just don’t belong. Other parents at the school know about Boo. I know they know. I know they talk about him. I know many feel sorry for us. (Please don’t, by the way…). But they won’t talk to us about him. He is the nearly-three-year-old cute, bespectacled elephant in the room of every playground chat I have. That’s assuming they ever do talk to me, of course. Usually they don’t.

Parent of disabled child + working mother = social pariah.

But you know, I am big and ugly and all that and can take it. I may feel guilty about almost every aspect of my life but I am settled upon any choices that I am still able to make about it. I am doing my best. For all of us. What more can people ask of me?

No: what I find hardest about all this is just not fitting in. Anywhere.

I’m sorry but I just can’t listen to the terrible tragedies people talk about in their day-to-day lives and force myself to care that much. That their bins haven’t been emptied this week. That their child prodigy has not yet been recognised by their child’s teacher to be the free reader they know they should have been acknowledged to be months ago. That Jeremy Clarkson has been sacked from Top Gear.

Some people wouldn’t know a tragedy if it walked down the street and poked them right in the eye.

I feel mean saying this. I don’t like myself much for thinking it and worry you won’t like me much too. But it’s true. And I realise that what I resent is not so much that my life isn’t such that I can have the luxury to worry about these things, but that I just don’t belong anywhere.

Look, I am lucky. I have a huge number of fabulous friends. A select few and anyone who reads this blog (I am grateful to you all!) know many of the ins and outs of our life. Our triumphs and struggles. The joy and the gut-wrenching pain. But most don’t.

Being the parent of any child is tiring. Being the parent of a disabled child sees you ride a tsunami of exhaustion on an almost daily basis. But what I realised today, stood there doing work emails on my phone because I knew no one wanted to talk to me, was that one of the most exhausting things in my life is rarely being able to be myself. To say the things I want to. Or not say them if I don’t want to. It is exhausting always having to protect other people’s feelings so as not to intrude on their lives.

I’m quite good at acting. It was a career path I nearly followed once upon a time. But when you don’t get paid for it, it’s a lot of effort for not much reward.

But at home I am happy. Happy with my kids. Happy for my kids. Happy because of my kids.

Back and forth

I am so pleased to have come back to the blog, although it feels weird. I don’t know why. It just does. And it may just get a bit weirder still as I won’t be blogging for at least another week as I have to travel with work for a few days. And that makes me feel weirder still.

Sissyboo is none too happy. I work long hours, but as flexibly as possible, which usually means I put the kids to bed every night as well as make tea, read stories and all the fun stuff at the end of the day and go back to work while they sleep. She doesn’t like it if don’t do these regular Mummy things. Neither do I.

But I am also desperate to get away. I feel awful saying it. But it’s true. For the last two weeks I have been fantasising about a few days where the distance between me and home and the time difference means that I can’t chase things, get mad with failing services or engage in the daily therapies. My back has been really bad lately and it wants a break, too. So does my overly cluttered brain. I will have to work hard when I go away, but seriously: it feels like a holiday. And boy, do I need a holiday!

Not today, though. Today, the reality has sunk in. I will miss the kids. Terribly. I know I will be OK when I get there because I know that they will be totally fine without me, but I will miss them.

Still, missing them doesn’t quite explain the tight knot in my stomach I am feeling right now.

I thought it was just the control freak in me messing up my gut. But I don’t think so. I have written notes so detailed they amount to a novella for The Grumposaur after all. It can’t be that.

No: I know what it is. It is a totally irrational fear that something might happen to me while I am away. One of my biggest fears for my kids is me not living long and strong enough to look after them. Especially Boo. I know it sounds morbid, but it doesn’t feel like that to me. It just feels like a very practical response to a problem so unimaginable that I can barely bring myself to think about it.

What if something happens to me? What will happen to them.

I know these fears will go. I know I will go and come back and be refreshed and life will go on as it is now with the briefest of interruptions.

But that is what this special needs life is like in a nutshell, I think. The parenting game is the same all mums and dads play. I am the same Mum I was when I just had Sissyboo. But the stakes are much, much higher now we have Boo. I was never a gambler, and the playing makes me very nervous. Still, we take the wins where we get them and the highs are like nothing I could have imagined before.

And if I were a betting person, then I’d bet it will all turn out fine. Wish us luck!

Learning to breathe

So, where was I? Oh yep: all at sea. Feeling pretty desperate and hopeless about the prospect of keeping my job and our home in the face of our Local Authority and their refusal to up Boo’s 1:1. Things got really bad. I had my resignation letter drafted in my head. I was thinking about a big move. I was stealing myself to try to explain to Sissyboo that we would have to leave our home, her school and our friends, and trying to persuade myself that we could move to a different area and start again at the bottom of all those service waiting lists. Who needs work, right? Who needs money?

But miraculously things turned around.

Well, I say miraculously… My child has cerebral palsy. I don’t believe in miracles.

But I do believe that hard work and determination can make anything possible. The hard work of doctors and nurses to save him. The slog of therapy that has enabled to sit for very small chunks of time and has brought him some speech when I was told that neither of these things would happen for Boo.

Taking inspiration, as we always do, from him, I wrote letters. We took legal advice. We contacted our MP. We went as high up every relevant food chain as we could until someone in the hopes that someone would throw us a lifeline. I kept phoning people, writing emails. Making our voices heard. It was exhausting. Someone offered to help. We’re still not out of the water. The solution has not yet been realised. But we can see the rescue helicopters overhead and the shore in the distance. Things should be OK. I cannot tell you how good it feels to write that.

So we celebrated, drinking a bottle of pricey fizz despite the stress headaches we’d been sporting for nearly 10 months. We walked around in a daze for at least 48 hours, not quite believing things seemed to be turning around. It was an amazing feeling.

And then it stopped. Nothing happened. Nothing bad, I mean. But I felt this panic rise up from belly one morning and it hasn’t gone since. It’s been over a month now. And it’s still there.

It’s not depression. I know that old foe well enough. No: I think it’s a side effect of long months of self-preservation.

A tidal wave of worry hit me that day. Worry about Boo’s hips; worry about schooling; worry about my failing back and the pain I am in (and what this means for my ability to look after Boo); worry about Sissyboo’s behaviour at school; worry about potty training; worry that the lifeline will get pulled back out of our reach just before we have time to grab it.

All of these fears (and many others beside) are real. None is irrational. All need worrying about because all need action (some urgently). Coming to this overwhelming realisation just days after feeling like I might just have had the winning lottery ticket felt cruel. But it’s hardly surprising.

I felt as if I was being suffocated when I let my mind wander onto these things. Suffocated and paralysed. Why was I being like this? Couldn’t I just take good things any more?

No: of course I could. (See fizz reference.) But what I came to realise was that in order to get to the point where we had something good, finally, to celebrate, I had forced myself for months to overlook so much. In order not to break, I had let myself off the hook of fretting over some things. I had unwittingly prioritised our worries into one gigantic list and only acted on the most pressing. I would have snapped if I hadn’t done so, I think.

I guess this was my version of a behaviour many have recommended to me since having Boo: putting on my oxygen mask before other people’s. Yep: that’s what I was doing.

But you know what I came to realise? In doing that I had forgotten how to breathe on my own. So when the oxygen mask was eventually taken away with the problem it had helped me through I was left gasping for air.

To be honest, I still am.

Don’t get me wrong. The frustrations and worries aside, we have lots of fun every day. We laugh, giggle and marvel all the time. But when I wake, go to sleep or have a rare minute or two to myself, I am working my way down the worry list I had repressed for so long and trying to remind myself how to breathe again.

I haven’t been very successful so far. I hope my return to blogging might help. I hadn’t meant to stop for so long. It just happened.

I hope you’re all still there.

Perspective

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.