The most appalling case, concerning a young vulnerable person with autism, has hit my radar this week and is something I feel very strongly to write about.
There are so many parents who often get in touch with such different experiences, and with the desperate desire to make it better for their kids, but we just don’t broadcast every single one.
There are far too many silent voices in this SEN battlefield but that doesn’t mean their pain is any easier.
I was tagged in an early tweet to help with some online support and since that moment I can’t stop thinking about it and what could I do, albeit feeling very little, to help.
So, for those of you haven’t seen already, there has been some media coverage around a young girl called Bethany.
Beth is a girl who likes singing Bob Marley music, being with animals and is described as being extremely funny.
BBC File on 4 did a great news cover (clip link here) which then followed on with this article in the i News (see here).
To explain quickly, Beth has Pathological Demand Avoidance (PDA) which is a profile that fits into the autism spectrum.
As with many individuals she has been misunderstood and poorly supported, but with with such devastating outcomes.
Instead of having her needs addressed and met, she has been put into a seclusion cell, robbed of sunlight, being fed through a hatch and with very little contact with the outside world.
Her human rights have been taken away from her as well as the system ‘gagging’ her parents who were trying to campaign to get some appropriate help.
With the aid of some expert advice and a court hearing this has now been lifted:
Bethany’s dad talks about this process in a post that has now been published (see here) in which he details how at last he was in a room and professionals were listening to him.
It has been agreed that Beth needs a supported placement and should never have been put in a secluded cell, after 21 months!
This story has hit a nerve with me as a parent.
When I read his words it feels so close to home – the meeting that happens when finally everyone around you realises you are the expert on your own child.
Only this case is my worst case scenario. What if they took my child away from me and didn’t understand how to handle her like I do?
No parent on this earth should be going through what Bethany’s dad has gone through, or the rest of her family for that matter.
No child should be locked up and treated even worse than a convict gets treated.
This doesn’t just need social media attention in my opinion it needs a full criminal investigation.
Laws need to be in place to protect our most vulnerable members of society, regardless of the ‘academic’ discussions that still happen whether a condition exists or not.
It doesn’t matter what label you use, without addressing the needs correctly, the outcomes will always be poor.
In this day and age do we really need children like Beth to have to be a human scapegoat for when those systems are failing?
We sent something in the post this week, following a request from Bethany’s dad, to send her a card which might lift her spirits.
This card was from one misunderstood girl to another.
This girl loves singing music too, is besotted with animals and is also the funniest person I know.
As my daughter wrote, it will come better for you and one day we hope you can enjoy your beautiful redemption song.
Those words to freedom.
I had no idea this still happened, i’m appalled and clearly very naive. This story chills me as i’m sure it would any parent but as a parent with a child with PDA, it resonates loudly – our worst nightmare. I feel completely helpless – all I can do is share….thank you for sharing!
Thank you so much for reading and commenting- I’ll be catching up with your post later today xxx
I was talking to Marc about this last night on his Facebook page. Our SEN kids are being so badly let down by this cruel, unfair government. I really hope Beth and her family get the support they so desperately need, before too much damage is done 😥
I think we all know that this is not just an isolated case, Beth is lucky to have had parents who had the capacity to fight for what she needs. It should be against the law and investigations should follow this. Thank you for reading and commenting. Xx
The sad fact is that Beth and her family are not the only ones; they have been heard in this case but there are others like them being treated appallingly and it makes me feel sick. How can anyone allow things to get to this point?!