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.