Double Rainbow

Let me start with a gentle warning: this is just our story. Access to social care - and especially respite - is a postcode lottery, and I send heartfelt solidarity to anyone currently navigating this maze. Back in 2014, when Andrew was six, we first approached Manchester City Council (MCC) to ask for occasional respite. At that point, we’d spent six years in full-time care mode: no nights off, no weekends away, no family nearby to step in. Six years of sleeping with one ear open. Six years of caring for someone with the capacity (and bowel habits) of a wayward toddler. We were exhausted. We underwent a needs assessment - at the time, MCC bundled it into a single “parent and child” review - and were promptly declined. The logic? We hadn’t had a nervous breakdown, so apparently we could cope. We appealed. We lodged a formal complaint. And in 2016, we took our case to the Local Government Ombudsman … and won. That victory didn’t exactly win us popularity points with Children’s Services,...

Well that was a little surprise - I thought about blogging or vlogging about Andrew's transition to adulthood and it's taken a few weeks to remember the name of the original blog - and it's still live (and my password still works!) But it's been almost ten years so where to start? Andrew is still autistic. Still deaf. Still a double-spectrum child. But his diagnosis is now PMLD - profound and multiple learning disabilities - alongside autism and deafness. And he's just turned sixteen. Where have the years gone? (I blame Covid for stealing more than one year!) I obviously need to catch you all up. So posts going forwards will be a mix of news and reflections from the last ten years, and updates on our progress towards adulthood. Things like navigating the move from DLA to PIP, does he need credits-only ESA, what about the annual learning disability health checks, accessing his Child Trust Fund, why do HMRC and DWP both need to know that he's staying in school ......