Wednesday 11 October 2017

Playing The Game #WorldMentalHealthDay

Stephs Two Girls October 11, 2017 #Worldmentalhealthday, ASD, autism, mental health, Pathological Demand Avoidance, PDA, SEND

So yesterday was #WorldMentalHealthDay and I found it somewhat ironic that I needed to take the day off social media in order to protect my own mental health.

Last Friday we were given the news that we will now have to battle in order to ensure the Local Authority provides Sasha with a suitable education. She is entitled to this suitable education just as much as all her peers who are currently sitting in classrooms in her old school.

back view of Sasha as she walks through forest

Sasha in her beloved Center Parcs... but which path will we be taking now?

The past few days have been very draining; whilst trying to enjoy a much-looked-forward-to weekend away at Center Parcs with friends there was of course been a constant whirl of thoughts in my mind. Since coming back home there have been many phonecalls, lots of reading and plenty of scribbled note writing.

To be honest, I've felt the most down I ever have. I would have gone to the doctor for a 'chat' if it wasn't for the fact that getting out is difficult when you have a child at home all day and no cover for them, and of course it's not the kind of chat she could come along and listen to...

I've never reached this low before and yet I know how common it is for parents of children with autism, Pathological Demand Avoidance or any other additional needs to take some kind of medication to keep their lives stable. Many swear by it, and although I haven't felt like I needed anything before now, I knew I would consider it when necessary. No stigma attached to getting help as far as I am concerned, whatever sort of help that might be. However when you can't get out, it's easier said than done. My help generally has to come from support online.

So I'm still at home, swimming against what feels like a rising tide, but absolutely determined that they can't break me because I am the one who needs to protect Sasha's mental health.

So far, we have been extremely lucky that Sasha is blissfully unaware of the full situation. We haven't told her this latest news yet as I know just how devastated she would be, and we want to make sure that we know what happens next before we confuse her.

Sadly, there are many children with these high levels of anxiety who are more 'switched on' than Sasha; they understand all that is going on around them and question everything. My heart sank when I read this post over on PDA parenting blog this morning - a 5 year old who says they want to kill themselves? How can that be?

And yet I know it's not just this one parent. I've spoken to several parents locally who have also experienced this level of utter distress from their children. There are many more nationally, and lots of those are children with Pathological Demand Avoidance, just like this girl, and like Sasha. The anxiety and despair are pushing children to a point where they want to end their lives.

I feel like we are walking on an even thinner knife edge now; I desperately hope things never get that bad for Sasha. I will do all I can to prevent it, but sometimes we are powerless. Sometimes we are forced to play a game that we just don't want to play. It's not right, it's not fair, it's not humane. Sasha's future matters as much as any other child.

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