Monthly Archive: July 2020

If you have a disabled child you will have met this one before.  I call it Tiny Tim Syndrome.  It’s living with, dealing with and generally finding a way through the two commonly acceptable options for the future of your disabled child. Your child has to either get better, or die.  Getting better includes cures, miracle and otherwise – and can possibly, in some circumstances consist of the child becoming just more socially acceptable.  This means that they get a green-card either by acting like a “normal person” (i.e. they walk and talk) or if they are outstanding in other ways, such as athletics, comedy, music, writing or just gobsmackingly clever.  In the short term they can get away with even being...

We all need validation for the choices and decisions we make. It particularly helps when you’re feeling out of your depth and a bit fragile.  You need to know that your rather expensive new haircut was a great choice and makes you look younger.  You want to be reassured that leaving your job without another to go to was completely the right thing to do.  And no, your bum does most definitely not look big in that great new dress.  When your choices are validated you feel accepted, calmer, happier and reassured.  That strident little voice of insecurity, uncertainty and fear within you is silenced.  But the need for validation goes far beyond a haircut or a new dress – it can...

“There” is the place you’re at in the beginning.  It’s place to the place you’re in later, which I’ll call “here”.  But of course, “here” will change over time and you may even think that “there” has changed as well – just don’t use those dreaded words “moving on” with me.  This poisonous little phrase claims to be an aspirational goal which you’re told you must believe is attainable – and more than that, you are told that it’s desirable.  As a bereaved parent one of the things I find most distasteful about the whole idea of “moving on” is that it implies your grief is a temporary state and it’s quite right to think you would want to leave it behind...

When your interview is the main item on the BBC national news, you’re getting press coverage.  To be honest though, if it wasn’t for the other 1,453 unexpected deaths, I doubt Nico’s death would have got a look in. The BBC’s Michael Buchanan (a very nice man) came to our house and spoke to me for hours, most of which was filmed.  We talked about Nico, about his life and his death.  We talked about Southern Health NHS Foundation Trust’s refusal to hold an investigation into his death.  We talked about their decision to conceal from us that they held an in-house review of his death and decided that not only were they not going to tell us it had taken place...

Within weeks of Nico’s death my partner and I knew we were greatly in need of counselling.  As we were at the stage where we barely remembered to wash and eat. The head of pastoral care arranged for us to see the in-house counsellor at the school where my partner worked.  It was free, we could start immediately and could go every week for as long as we needed to.  It felt like a life-line.  Although the counsellor had no prior experience of grief counselling and had never worked with a traumatically bereaved family, he told us he was excited to work with us and was actually looking forward to the challenge.  We had no prior experience of counselling and took his...