It’s funny really. You have a (learning) disabled child, the world kind of falls apart and then falls back together, bit by bit. There are unexpected highs, deep lows, challenging times and a backdrop of relentless meetings with professionals. These meetings are sort of necessary (because what else have you got without any reference points?) but pointless because there is a lack of real understanding or engagement with either your child, or your lives as a family. We eventually shook down, accepted LB’s difference and began to notice his humour, quirkiness and qualities such as generosity, lack of guile, artifice and his honesty. We treated the meetings with gritted teeth. And got on with life.
Then came the recent inpatient assessment and subsequent sectioning. I was tipped into mum redundancy (MR). Suddenly and without warning. The warnings for the impending hospitalisation were flashing brightly since Christmas, that was only really a matter of time (though it could have been circumvented with effective action). The warnings for MR were completely buried.
Call me old fashioned, but it strikes me if you have (not in an ownership way) children, you don’t really stop being their parent. I still tell Rosie what to do. She doesn’t always do it, but I feel I should provide some steer. My mum is still my mum. These are lifelong positions, that shift and change, but (commonly) remain centred on love, responsibility, reciprocity and a gut-wrenching desire for your child/ren to have the happiest, most fulfilling lives, possible. (I realise that this isn’t always the case).
This is confounded when the child is learning disabled and reaches that (constructed) age of adulthood. Necessary changes to the way in which learning disabled people’s lives have been conceptualised and understood, a shift from institution to community living, and the accompanying political call for self advocacy, autonomy and empowerment, has led to a focus on rights. I support this move completely. Learning disabled people, like anyone else, have the right to make decisions and be encouraged to have aspirations and the opportunity to lead fulfilled lives.
At the moment, LB has the right to decide whether he sees us or share his health information with us. The implications of these rights are substantial. The problem for me is, an emphasis on his rights can be misunderstood, misinterpreted, misused or treated as something discrete, outside of the broader family context. I believe, barring some thunderbolt shift in health and social care provision, that LB’s potential to lead a fulfilling and happy life will necessarily involve his family. For us to be sidelined at this point will have a potentially catastrophic effect on his life chances.
‘Eh? What’s that?’
‘He could have an advocate. S/he would look after his best interests.’
‘He turned down the opportunity to have an advocate. He doesn’t know what they are.’
‘With clear explanation, he can decide to have an advocate. He’ll be offered one again in ten days time, by the terms of his section.’
‘That’s great. But they won’t know him. Surely that’s important?’
Does our experience of LB’s family count for nothing?? Should an advocate be a substitute for that understanding, or instead complement it and work with families?
Once again we’re left without any guidance. It’s like being back at those early days when we knew there was something different about LB but given no guidance about what that meant, for him and for us. We’ve re-fallen into an unexpected space in which he is treated as a consenting and competent adult. A space which is so incongruent and so alien to our experiences of the past 18 years. Maybe it’s a good thing in theory. Maybe LB is at a stage in his life to shake off the confines of his family and do what he wants to do, without dishwasher duties or an expectation that he will join in social obligations. I don’t think so.
I keep returning to how this idealistic position ignores the current political climate and contraction of support and services for learning disabled people. As a redundant mum, I can use the hours I spent advocating for him (unacknowledged and unrecognised by services) doing something else. Like developing my beginner crochet skills,
Or maybe my/our expertise could be recognised and used to help LB in partnership with those who now (supposedly) help him realise his rights.
Reblogged this on Gimp Stories and commented:
Being the parent of, and advocate for, a disabled person is often fraught with challenges.a challenge.
Thanks Michael 🙂
On a visit when our son was hospitalised my husband was not happy our son looked really unkempt , he registered concern and was told that he had been refusing to get changed did not want help either,had he been 18 months older it could have been put down to his choice!
Onreturning home we discussed how uncomfortable his dad and brother were leaving him, despite his illness knowing him so well they felt something was not quite right.The following day we had a call to say that a trawl of CCTV after a concern had been raised by a member of staff(full praise th her) about an agency team member with another child it came to light that our boy had been frightened by this agency staff member in his bedroom.As parents we were devasted.Our son at this point was really ill and suffering severe side effects to drugs,the most vulnerable state. The unit was in administration and we had a long haul with reasons for not being able to view the incident involving our son. After 3 months we eventually had access to CCTV it raised many issues , not least that those who watched CCTV had not recorded what happened correctly. We are still waiting a reply to issues raised following this. One of our biggest arguments was that if our boy had been nearer home(he was placed 170 miles away) we would have been able to have more input, and be able to monitor his care more fully,he is nearly 18 I am now petrified that this will not be the case. Having a unit almost on my doorstep will be no consolation as being an adult with choices, it seems those who love him dearly and are wholeheartedly looking out for his best interests and wellbeing could so easily be excluded.
That is so awful. 😦 . We’ve been advised to go down the route of lasting power of attorney for welfare. I’m investigating now. Sigh.
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