When we got married we planned to have satisfying careers, 2.4 typical children and no dog – well, Dave wanted one but I don’t.
We never could have guessed what the universe had planned for us instead. When Rohan was born it was hard not to totally fall in love with him, I still remember the nurse passing him to Dave and the tears rolling down his face as he said, “thank you”. He was, and is, perfect. As time went on, we realised he had epilepsy and then just after he turned one we received his diagnosis: Isodicentric 15. I was 17 weeks pregnant with Serena; the memory of that phone call with the consultant neurologist is still vivid as yesterday.
We were determined to give Rohan all the support he needed to achieve what was right for him. What I admire most about Rohan is his resilience. I sometimes call him “the beast”, because, like a gladiator, it doesn’t matter what happens: he gets up and carries on. He is undefeatable, yet so loving and so sweet. He is a real force of nature, always going for what he wants.
We have so far talked about many of the issues we have had with Adult social care (LA) and ICB, but what is it that we really want? Most importantly, we want transparency; we want to be respected and involved in our son’s care decisions; we want our son to be safe; we want our LA/ICB to come round a table and have an honest conversation as per the care act and our court order, rather than hiding in the shadows of expensive lawyers.
When in childrens’ services we called a mediation meeting with education and Social Care it was just like this. I took a photo of Rohan and placed it in the centre of the meeting table to remind us of what/who we were there for, we had an open and honest conversation, and came to agreements. My son’s advocate was shocked at how civilised the meeting was. My response was: “I see us all working on the same team to support Rohan, I don’t see the point of coming together in any other way.”
With adults’ services we have many offers of meetings, but no invitation. We have had threats, silence, and denial. Funnily enough it has descended into pointless acrimony and mistrust when it doesn’t need to be. I am a peace-loving creature who just wants to spend time doing the things I love with those I love.
When I have found myself in conflict in the past, I like to stop, take a breath and say: “right, let’s wipe the slate clean and start again. In what way can I help you?” I so wish we could do this with adults’ social care, but they do not seem to want to engage on this basis.
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