Tag Archives: sen parenting

Running for Self Care

Anyone who reads this blog regularly will have gathered that I live my life by lists. I organise my life around lists. And I tyrannise myself with lists. Lately, the pressures of looking after the kids (6-year-old whirling dervish, Sissyboo, and 2-year-old, Boo, my little bundle of amazingness who just happens to have cerebral palsy), holding down my job, managing Boo’s gazillion appointments (3-5 a week), daily therapies, keep on top of house stuff, well … I can’t finish the sentence because I’m too tired to think about it. Let’s just say, it’s a struggle.

And now, I find I can’t remember the simplest things. Everything has to be written down or it doesn’t happen. Everyday the lists get longer (despite me ticking off things) and I go to bed each night thinking of everything left to do. I even made a list in a dream the other night. I am not kidding.

The one thing that is never on the list is me. My list is organised in categories: Boo (he has separate lists for equipment, therapy and a new one for schooling – get the feeling I’m a bit anal?); Sissyboo, House, Work and Miscellaneous. I don’t even give myself space in the miscellaneous list.

I don’t have the time to think about me. Which is why my eyes haven’t been tested for 3 years, and I am long overdue a couple of routine medical things at the GPs.

But I also can’t ignore me either because I am not just a parent, I am a carer. If I break, other things won’t work so well either. I’m not indispensable (who is?) but not looking after myself will make the Boos’ lives a lot harder, as my recent back problems (the consequence of lifting an immobile and lengthy toddler-who-can’t-toddle) have painfully brought home.

I have to look after myself. I just have to. If I can’t do it for me, I have to for the Boos. And so I will.

And I am.

This week, and now that I have a lovely physio helping me to manage my back pain, I have started back in earnest doing something I never thought I would ever do before having Boo: running.

My running journey started just weeks after he got out of a 6-week NICU stay. I wanted to set myself a challenge. To do something tough to thank those who had helped Boo battle prematurity and meningitis. I wanted to help other families going through similar things, too. I wanted to raise money. So I rashly decided to run a half marathon. With no running history. With no fitness. With depression. With a newborn. While breastfeeding. I’ve told that story on the blog before, so I won’t tell it again. All you need to know is I did it. I ran a half marathon in 2 hours 11 minutes and raised £1500 for Bliss.

And then I got injured. And depression hit harder. And I returned to work. And… I stopped. But I knew I would start again. I knew I had to. And now I am training for a hilly (gulp!) half marathon in September to raise money for a charity that has done lots to help Boo and us in the past nine months.

Three years ago, running wouldn’t have sounded much like self care to me. You run, you get blisters. Your muscles ache. You get rained and sleeted on. If you have to run late at night (as I often do) you tread in dog crap and don’t realise until you find you can’t run away from the smell. It hurts for crying out loud. But for me, it is healing.

I’ve been trying to work out why.

It’s partly because it doesn’t feel selfish. I know rationally that doing something for me is for the kids, too, but can’t always persuade my heart to feel that way. Running is different. I run not to go faster or further but to fundraise. That gives me drive. And it helps get me fitter and boy, I need to be. Boo is getting bigger and bigger. My back has been in a terrible state and it just can’t be. You see despite all the gadgets and gizmos Boo is slowly getting through physio and OT, we as his parents, are the most essential pieces of equipment he has. Just as I clean and maintain his standing frame, chair and adapted buggy, I have to maintain me, too. Running helps me do that. It helps me work better for him. Knowing that means dashing out for a 30 minute jog feels much less selfish than it probably is.

I also run because it gives me head space. The only time my head is ever fully clear and free is when I run. Often I think a lot about Boo when I run. And I use Boo to keep me going when it’s tough. When my legs burn and my lungs feel overused, I think about every day he spent in the NICU, very time I’ve asked Boo to roll over again, or go from sitting to standing in physio when he hasn’t wanted to. I think about every negative pronouncement from medical professionals and how he has proved them wrong. He has never ever given up. Why should I?

But I also spend a lot of time running not thinking about Boo. On short runs (3 milers) I have taken to running in the graveyard near my house. OK, I know that sounds odd. Let me explain. I started doing it for practical reasons. The graveyard is large and I can run laps in it. But, I can also be home in 3 minutes, if I’m needed. When I was breastfeeding and when Boo was having seizures this felt important. Now I run there because I find peace in this place. Because it’s beautiful. And quiet. Because there are bluebells  and buttercups there now and the odd, confused bumble bee. Because there will be butterflies soon. Because I feel part of something bigger, a world beyond the claustrophobic one contained in our four walls. I need that. I need a little piece of a different life, if only for brief 30 minute intervals three times a week.

Running is respite. And respite is vital. If I didn’t run away sometimes, I worry I wouldn’t know just how much I want to come back.

 

 

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What Katie Did

Katie Price. Not two words that I thought I would type in anything I ever published. But then I never thought I’d be typing cerebral palsy, infantile spasms or chromosome 22. And now I am writing a blog post with all those words in, because this is the strange world I now inhabit. A world in which words/people/conditions that I never thought would be relevant to me rule many of my waking thoughts.

And now I can say that I have something in common with Katie Price. My students (who have been known to drop her name into classes in the hopes I would go off on one of my pre-programmed responses to their arguments that feminism has no relevance to them) would find this amusing. But we do. We both have a disabled son. And she is a great advocate for her son, as I aspire to be for mine. And…

…there the similarities end. It’s not the different books we read or try to write or our different looks. No, it’s like this: I couldn’t do what Katie did. I  couldn’t turn my back on a community of people – the parents of children with additional needs – by describing them as too ‘lazy’ or sometimes too ‘ignorant’ to champion their children’s needs and access much needed resources as Ms Price did in a recent interview on Radio 5 Live (you can read about it here).

Now, my partner is a journalist and a very good one. So I know that journalists ask questions with a view to eliciting certain kinds of answers. And I also know that journos can intentionally or unwittingly twist people’s words so that they convey rather different meanings from those originally intended. And lastly, I understand that Ms Price wasn’t taking to task all parents of SEN kids. But enough with the caveats.

Of all people, those of us with disabled children know that labels stick and can be toxic. We know that words can be weapons that can be easily picked up by others and can cause grievous harm to our loved ones. And of all times, to say now, in 2013, when disabled people are facing more prejudice, more financial hardship and more difficulty in accessing services than ever before, to target the parents of disabled kids as unfit for purpose (as some would describe our children) is frankly beyond belief.

If I were a football fan (I’m not), I’d call it an own goal. Instead I will just call it irresponsible.

I could respond directly to the charges that Ms Price implicitly levels at me by referring to my recent ‘Day in the Life’ post where you might see what one of my lazy days looked like. I could respond to charges of ignorance by pointing out that I have three degrees, I am an active University researcher and, despite working in the airy-fairy humanities, have now read so many scientific research papers that I have three times been mistaken for a neuroscientist by neurologists.

I don’t say that because I am proud or boastful. I say it to point out that it doesn’t matter at all. I am well-informed partly because I am lucky enough to work at a university where I have access to world-class research at the click of a button and my log in and password. And you know what? All my research, all those 6 figure grant applications I’ve written and filling in a measly 72 page DLA form was a Herculean effort for which I felt woefully unprepared.

I have spent days reading PCT and NICE protocols and  Boo has still been subject to sub-standard care. He still had to spend months and months and months on waiting lists without the equipment he so desperately needs to prevent life-altering conditions on top of his cerebral palsy. And this is not because I have been lazy or am ignorant of what to do. It’s because in my county we have an especially convoluted two-strand OT service which is greatly overstretched.

10 months on one of the many ‘crucial’ waiting lists in which he is listed as a priority and his specialist seating has only just now been ordered. And what made this finally happen? My knowledge of and research into what he was entitled to? No. My weeks of undignified crying on the phone? No. They just provoked sympathetic cries and hugs from healthcare professionals who said they were desperate to help Boo but couldn’t yet.

You know what did it? And I am not proud of this, by the way… you know what made the difference? It wasn’t the letters from healthcare professionals advising of the health risks to Boo if we weren’t assessed quickly, or my promises that I would try to somehow self-fund whatever he needed if they would only assess him so we knew precisely what it was he needed. It was (and maybe I have more in common than Katie Price than I thought, here) the knowledge that Boo’s Dad is a journalist who works regularly for two national newspapers.

My industry and all my research made no difference whatsoever. The accident of Boo’s Dad’s association with the media was the thing that did it and got us an appointment the next working day on a morning when we were told the wait would be many more months for him to be seen and assessed.

And this is the reality of SEN care in this country. There are lots of good stories out there and I am a great advocate for the NHS, to whom I owe my son’s life and my daughter’s. But I can see clearly that some PCTs, LEAs, social services and other relevant government offices are riven with problems. I see daily that joined-up thinking and services are little more than political jargon in many areas and that the national picture of what is available to whom and at what point has very little national about it at all. Systemic and regional inequalities exist despite our determination as parents to advocate for our kids.

I am no politician and have no idea where to begin addressing these issues systemically. But I believe passionately that we will never have a hope of addressing them if those of us in this community (and we might not like it or have asked to be part of the SEN community, but we are in it for better or worse) stick together, stick up for one another and look after the interests of all our kids and their individual needs.

And those of us who have a platform to do this publicly, whether in a small blog like this, or in a radio interview on a popular, national station, or on a globally watched reality TV show have a duty to do so industriously, knowledgeably and responsibly.

I have written this post for the peaceful blog protest being staged over at the fabulous Downs Side Up. Please take time to read the many wonderful posts linked up there.