Today we are sharing the first of a series of posts from the very Bl**dy Awesome Parent – Lynn James-Jenkinson. Lynn is a proud mum and also the CEX of Pathway Associates and Director of the North West Training and Development Team.
Background to the series:
Writing this series of 5 Blogs I was thinking about –
- people who work in Health, Education and Social Care Services,
- individuals with a learning disability, autism or both and
- their families, friends and allies.
I also talked to friends because I was a bit worried about how Emma may feel. They, as they always do, helped me think about what Emma might say and how she might feel.
Could she really say what she thought from her perspective? Would she be asked?
I don’t mean that she couldn’t say what she thought. It’s not that the stories or what I will say is hard – for most of it she was there too. It’s more like there’s this unwritten rule that disabled people can’t share this stuff from their own perspective. What I mean is she maybe can’t because she hasn’t got the words for how it feels to be the source of so much pain for the people she loves most.
My friends helped me understand that from their perspective when you’re little and/or human, you can’t help but think the pain they see is all their fault – how does that make you feel, like shit really that’s how.
They told me that by the time you do have the words, you have this sense that its part of your job as a disabled person to protect them (the people you love) and telling the story from your perspective will definitely only hurt them more. “So, you keep it to yourself.”
As far as everyone else who might read the stories families tell are concerned, if they’re a disabled person themselves they know just how hopelessness, helplessness and loneliness feel, so why write it down? If they’re not, they either minimize your feelings, can’t empathise at all, or pity you (vomit emoji) and take it as evidence that they’re right to think it’s very sad to be a disabled person.
Becoming The Mother
I worked in Social Care as a Support Worker, Social Worker and Manager before I was ‘the Mother’ and still do. There are some things that I have thought of as LESSONS for public services and some that I think of as RULES for individuals, families and friends – for our family anyway.
I am blessed to have the best job in the world as CEX of Pathways Associates and Director of the North West Training and Development Team. It means I can hover between life and ‘the system’ enough to try to survive our life and influence ‘the system’ or at the very least make some people think. Some days are proper hard though and I hang my head in shame at my profession. Some days I do the same listening to some families to be honest too BUT I recognise their journey.
All behaviour is communication so if a mum is shouting at you don’t take it personally folks its just a symptom of the pain, trauma and fear they are living with trying to be the best parent – that said some professionals will now being saying to themselves “but Lynn not all families are good supporting families some might be part of the issue” – yes, perhaps, but in 30 years+ of working with people with a learning disability, autism or both and families I can honestly only think of a handful where I would agree that to be true.
I can think of far more disciplinaries I have sat in for paid folk who have genuinely been bad sods than I can think of safeguarding situations with families. Choose to agree with me or not it doesn’t bother me. I choose to believe that the majority or individuals and families want the best life for themselves and also that the majority of people working in services do too they just get stuck in the ridiculousness of back office systems and rules that get in the way of us all having a great life and keeping hold of it.
From being 18, after I qualified as NNEB (National Nursery Examination Board) I worked with children and adults with learning disability, autism or both and their families. I always believed that I worked really hard to make sure the voices of the people I supported and their families were heard – I still do – BUT, trust me, if you are reading this, being the parent of a young person who may need to access support from public services requires a different skill set, different energy levels and just like for all our children is a forever job but it’s also a forever job in terms of supporting them to access the support they are entitled to through public services and it is THAT that is exhausting and equally it is THAT that could be so different.
Our Emma isn’t any harder ‘work’ than her brothers and sister have been or are, it’s the folk that feel it’s their duty to protect ‘public money’ and feel they are invited to have an opinion, or worse a say, in how she and we live our lives. It’s the clap trap attached to that extra chromosome not the extra chromosome that’s exhausting, trying to stay one step ahead.
The difference that is needed is not necessarily WHAT services do to ‘protect the public purse from the pesky public’ but HOW you do what you do. Your interactions with families from Day 1 will inform how they react for the rest of their lives – Pavlov’s dogs.
Along my professional journey there are lots of people who stand out to me and whose voices I still regularly hear in my head.
Remember the privilege of being invited into someone’s life. No one wakes up wanting a nurse or social worker – trust me if you are there you are probably the last hope they have of support. Think about how hard it is to pick the phone up and ask for help.
Mrs S and Mrs R – were mums of 2 fabulous young women that I was privileged to support, both ladies did not use words but by god did they communicate and we had such a laugh. Both mums were feisty and never afraid of telling me exactly how it was. I loved it. I asked them to deliver some training for me to new staff that were starting work across the service I was involved with. We worked really hard together to prepare and the day duly came for them to go and deliver. I sat waiting for them to come back to hear all about it – JESUS be careful what you wish for Lynn. Mrs R appeared and nearly took the door off she banged it so hard, Mrs S nowhere to be seen. I thought there had been an accident she was so upset. “Never ever ask us to that again… S has gone home she is so upset”. They had delivered the training and mid way someone on the training said “So actually there is nothing you can do for you daughter that I can’t do is there?” Mrs S reply as she was leaving the room distraught “You can’t bloody love her like I do”.
Mrs A and P. Mrs A is a warrior mum who I adore. She had direct payments to support P before the Direct Payments Law was passed. After the Panorama programme about Winterbourne View in 2011 she said “Well that’s it Lynn I will have to live forever”. Sadly P passed away a few years later and as we came out of the crematorium Mrs A got my arm and said “I don’t have o live forever now Lynn even though this has broken me”.
I don’t want to be her only friend or her my only friend – the right order of things is that parents die first. If you think that mums and dads don’t think about it before they close their eyes each night or as soon as they wake up you are deluded. To build and maintain friendships with your child takes energy, creativity and commitment.
Mrs H and S – a mum and daughter and Mrs E and D – a mum and son.
Mr H had died years before. I don’t remember ever seeing Mrs H without S or S without her mum.
Mrs E and D lived alone; D was fabulous and regularly tore lumps out of me if I wasn’t smart enough to listen to what he was telling me quick enough. D was regularly sent home from the day centre when he was ‘naughty’ to Mrs E who was in her 80’s. Lots of judgements were made about how Mrs E survived supporting D, she adored him, he was her world and my memory tells me he died just before she did (that may be wrong but that is how my memory recalls them).
Mrs H and S and Mrs E and D haunt me and it has been my biggest fear and driving force since the second Emma was born. I know that most of the time she is happy to be with me. Right now as a 16 year old she does not really want to go to town or do the things many of her peers want to do and they are not old enough to take responsibility to support her.
Access to a personal budget – not a direct payment – would really help us maintain some of those relationships, her peers can’t afford to go to the pictures each week and we can’t afford to pay for them. A personal budget would mean we could use it to pay for some good things to do with some natural support from her older sisters and brother.
For now I pray we have done a good enough job and she may get invited to 18ths and 21sts when the time comes and by that time there will be some friends who are old enough to take responsibility and remember what a good laugh and good friend she is.
Part 2 – Welcome to Holland – coming next week. A huge thanks to Lynn for taking time out of her busy life – did I mention she also co-organises the Live Life Festival – if you live in or around the NW, you should check it out.
Mum to three great kids, each with a different SEN.
Transplanted from the NW to the SE.
Co-founder and Director of Bringing Us Together