Tag Archives: disability studies

Liminality, mothering and something?

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Crap. Crap. Crappity-crap. Thoughts are pinging round my head that I want to write and ‘resilience’ keeps cropping up to capture them. Ggggrrrr.  I’m not convinced by ‘resilience’ in this context. I want a different word, one that feels more comfortable. But what???

Anyway, parking that for a moment, I had two days off this week. What a pile o’ shite they’ve been in some ways. Terrible weather, the weekly community team meeting (CTM) at LB’s unit which is (inevitably) a real party stopper, a few failed tasks and overdue domestic stuff. The cockroach remains in the freezer, way too cold and miserable to schlep up to the post office – me/the weather that is, not roachy. LB refused my offer of various outings preferring to have a long bath instead. [And no, I didn’t play the McDonald’s card again, because it can’t become about burgers all the time].

After piecemeal chores, and heating up leftover curry for me and Rosie, I went back to bed with my book and ipad to power through some Candy Crush levels. And have a kip. That was cool. We got to visit LB early evening and, with some persistence, caught his attention in a scrap metal yard discussion. With him smiling, it was ok to leave. (And get caught in rush hour traffic on the ring road home. In the pissing rain).

Anyway, this is a long ramble really, about my thoughts yesterday evening.  I got to thinking about the recent jaunt to Bristol with twitter buds Kate and Alexa, to visit a superb social enterprise set-up. This memory was one of those winding moments that can be unexpected.  It’s a funny one really. I avoid LB’s bedroom and feel sad when the odd bit of his clothing comes through our (chaotic) washing process. But I can watch previously lost home movies with real enjoyment. Then I notice an old ‘Pupil of the Week’ page (yep, the dude racked up quite a few over the years) pinned to the fridge, or chat to someone in the street, and that punch in the stomach is back. Together with the old rock throat combo.

Ironically, 57 days on, we’re in another liminal space.  Liminality was something Katherine RC and I wrote about a few years ago in relation to being (academic) mothers of disabled children, excluded from disability studies (for not being ‘disabled’). LB being contained is another version of this, in a different space.  We have no idea what is going to happen, how it’s going to happen and what we should do to help/make things better for LB (and us). There are no guidelines, no advice, no rulebooks.

The CTM focus is on the here and now; LB’s everyday life in the unit. The broader questions can’t be answered. I was recently flagged up as a problem in a meeting I missed; described as unable to move beyond seeing LB as a child. While this has since been ironed out as misunderstanding/miscommunication, it contributes to the experience of liminality.

My reflections here are twofold; I’ve been struck by our resilience adaptability? acceptance? ability to get on with stuff? as a family. We’re all mucking in and making do, getting through and looking out for LB. That’s fab. Seriously fab. I don’t know where these resources come from – if someone said 56 days ago, that LB would still be in the unit at this point, I think I’d have collapsed – but we’re muddling along.

My worry is that in the same way I’m only able, with hindsight, to view the course we took with LB as a pup, as unhelpful, we may similarly get blown off course here. We’re almost back in that ‘just diagnosed’ type space. Unable to make any sense of it and dependent on the views of health and social care professionals.  We have no idea what ‘the course’ is, or should be, particularly now LB’s tipped into an unthinkable place. And perhaps they don’t either.

I also wonder if being ‘resilient’ may muddy things.  We’re so busy muddling along, dealing with direct payment nonsense, negotiating visitations to LB on a daily basis, schmoozing, ranting, questioning, trying to get some sleep, and hold down jobs, we’re unable to see things clearly. We’re simply following a well trodden path which I suspect should be changed.

Being LB’s Mum

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Regular readers will know that quite a chunk of this blog focuses on my relationship (and interactions) with LB.  This isn’t to detract from my (or Rich’s) relationship (or interactions) with any of the other kids. It’s just that life with a dude like LB has peculiarities and a difference to it, that are often not really known about, or understood, by people outside of family or close friends.

I’ve been thinking quite a bit recently about being LB’s mum. This is because he is kind of becoming an adult. I say kind of for obvious reasons.  Well I think they are obvious reasons. In my book, he’s going to have to be able to count to ten and cross a road unsupervised before he gets adult status. But maybe I’m wrong.

Being LB’s mum has had a profound impact on my life. This impact has been a mix of good, bad and indifferent. As I’ve mentioned before, LB is a genuinely funny dude. Intentionally or unintentionally, he has been consistently entertaining, he is loyal, loving and delights in certain interests. Being his mum has opened up a world to me that is, by turn, frustrating, enlightening, rewarding and soul destroying. I’ve met a lot of remarkable women who have had to go so much further, in terms of physically and emotionally caring  for their disabled children on a daily basis, than is commonly expected of mothers. These women have a resilience, humour and down to earth engagement with regular, sometimes relentless, sometimes shocking challenges. These challenges take so many forms, it would be impossible to begin to list them, but they are substantial. And life changing. I’ve also met a lot of remarkable people who throw themselves into teaching, or caring for, dudes like LB.

My experiences with LB have motivated me to explore academic areas, and develop a career, that may have passed me by in different circumstances. That is pretty cool. I’ve dived into the disability studies pool, splashed around with other parent academics to help carve out a legitimate space for parents of disabled children in disability studies. And had critical, challenging and stimulating discussions and debates along the way.

The bad has been (largely) caused by crap, poorly organised, non-existent or overly bureaucratic support. It has also related, at times, to his behaviour or actions but we won’t dwell on that now*.

Now he’s heading into a different space. A space that is a little bit uncertain. Some things ain’t changed. One of us has to be here everyday after school. He still needs a babysitter if we go out. He still needs prompting to get dressed and clean his teeth. But chucked into the mix now is shaving (shudder), sex education (“Mustn’t get pregnant Mum”), sick notes from the doctor and more surveillance from the state in the form of Atos nonsense questionnaires** and interviews.

Being LB’s mum is different to being the mum of non-learning disabled children. Instead of having a cracking old cry, waving him off to university or wherever, the boy ain’t going anywhere for the forseeable future. We are in for the long haul. That’s fair enough in a lot of ways. But the worst, truly awful and distressing aspect to being LB’s mum is thinking about the future. I know, from speaking with a lot of other parents, this is the biggy for most parents in this situation.  The ‘I really can’t bear to go there’ issue.

That is why I am so enraged at the proposed erosion of the welfare state by a government who have no understanding of what lives are like on the disabled (or chronically ill) side of the fence.

It’s wrong. And damaging in unmeasurable ways.

 

*But as a taster run with aggression, tantrums that have raised the ceiling in substantial supermarkets, a sleep pattern that would flummox a torture regime and low level, continuous questioning. Of everything truck and bus related.

**For a future comedy post.