Monthly Archives: March 2015

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.