How many times can I return to this? [Er, clearly endlessly…] But this is hugely important. Yesterday we received a DVD with over 368 pages of notes about LB’s healthcare from the hospital. 368? It wasn’t like he needed a lot of hospital care. He was in rude health. Had a spate of assessment experiences as a tot (see polaroids on previous post) and then pretty much coasted until epilepsy kicked in around the age of 16. Still, the hospital held this book-length set of papers about him.
Last night I went through them. I was struck by two things. First, the level of surveillance these demonstrated. I had no idea that even the faceless assistants in those week long assessments were recording my every move and interaction with LB, the other parents and the world. Blimey. I was seen to be ‘sociable with other parents and staff’. Thank fuck for that. I thought we were all just hanging out. Negotiating tricky paths in a space of uncertainty.
(When I think of the layers of ethics involved in any research project compared to this type of gig? In the former, ethics committees act as a straitjacket inhibiting any unauthorised move on the part of the researcher. In the latter, family life as open season for any ‘professional’ to dive in, comment on and pick over.)
The second thing was what this surveillance showed about my relationship with LB. In the countless waste of bloody time assessments, I was the central person that professionals referred to, drew conclusions from and commented on. Consistent throughout the notes are comments like “LB frequently went to his mother for cuddles or with a toy. He gave good eye contact and lots of smiles”. Sob.
I ain’t flagging this up to say that LB and I had an extraordinary relationship. On the contrary, we had a relationship typical of many/most mothers and children. But, when you have a disabled child, this relationship becomes public property. The subject of judgement. And when your dude turns 18, you’re transformed from being a central figure of love and care, to being a problem. That is very, very damaging. For everyone.
This afternoon I’m giving my first ever (and probably only) presentation about being LB’s mum at a women’s literature conference in London. I’d agreed to do it before he died. I wasn’t sure I’d be able to stand up and talk about him, so I made this film about the spaces of mothering. I’m now thinking it will have to be a work in progress as I need to add ‘Official spaces’.
mydaftlife 
I did a freedom of information request on my daughters files when battling for funding from the social work. I was truly shocked at how much info and observation notes were written about me!! I hope this afternoon isn’t too stressful for you
It was ok, thank you Polly. Probably partly due to the lovely Chrissie Rogers chairing the session, and a very receptive, kind audience. x
As ever thank you for your expertise. You clearly loved every bone and I believe that must be our comfort now to know our sons loved and were loved for their entire lives. Thank you and I wish you & family a peaceful weekend
Sara, this is one of the most beautiful things I have ever seen/ listened to. I was supposed to finish writing a paper today and now am sitting here laughing and crying. That clip where LB is giggling as tot… just beautiful.
PS so glad NHS has seen sense for once, about Fran x
xxxx (I’m ignoring the sense comment… *don’t ask* but so pleased you liked it. x
I think of you daily. I am a mum of an adopted son with major disability and for me it also remains difficult to be just mum , the amount of times i have said leave us alone to get on with normal family life.He has many assessment folders and care reports, that have followed him around . some of which got lost in transit from one building to the new . Im asked why i do not use help that available.I want my son to myself. I missed out on so much. LB knows he is loved. Lots of love to you. Hold onto those special mum and son times memories.
Good for you Belinda, and thank you. Hope the bureaucracy lessens. xx
I loved your film (well I cried a bit actually). Your analysis really rang true, really connected to experience. I remember when my daughter went into the mental health unit the staff seemed to think I was odd to be upset about it. Ordinary things – like having private space to have a cuddle, or being able to speak to her on the phone – they seemed to think there was something odd about it. It was as if ordinary mothering was suspect. I had to justify my role in her life.
This seems to be so common. It’s wrong. And horrible to experience. And so unlike any experience with kids who aren’t surveilled by the system. The ordinary becomes extraordinary with a negative tinge. Sigh. x
Stunningly beautiful film Sara.
Just a quick story. When we were sitting in court for the first day of the hearing to start back in 2011, a court employee wheeled in four huge storage boxes and parked them by the witness box. Two minutes later, another bloke wheeled another 4 in. By the time, the judge appeared, there were 16 boxes on the floor. I whispered to the counsel – “What are they?”. They were the records of Steven’s year at the Unit. I couldn’t even begin to guess how many pieces of paper were in each box. During the hearing, possibly 50 pieces of paper were refered to – the rest remained blocking the access to the witness box
Ha. Does anyone reflect on their actions? Did they chuck em in the recycling at the end or take them back to ‘file’ at nonsense tower? Seriously wrong.
Love, love, love all your comments, as usual. Depressing, but in no way shocking to hear so many similar experiences.x
My daughter is 35. She is an .adult (most of the time) but it certainly didn’t happen by magic at 18. It is a long slow process we have both worked on – and I can still find myself dealing with a stubborn toddler or a bolshy teenager on any given day. Are any of us ever just simply “adult”?
I don’t think I have ever read anything much that is positive about the role of mother/parent to a vulnerable person – but what is it that is going on here? I don’t think any of us would mind being sidelined if the people who stepped in did a better job – but that isn’t what happens, is it?
Absolutely. Most parents I know of ‘adult’ children would love to be able to hand over the reigns to someone who they trusted, who understood and supported their children. It is a bit of a nasty little circle really; inadequate/inappropriate support means parents have to remain involved, leading to prickles and tensions with service providers (hate that term), leading to the ‘problematic parent’ label. It is a right old mess really, and I can’t see how it can ever change with such ingrained attitudes/views. A breath of fresh air is needed to shake up the whole system and radically re-design it. (And, sorry to all sorts of people, ‘person centred care’ isn’t the magic bullet, sadly). x