Just Charlie G

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It’s a bit of a weird thing writing a blog about multiple subjects and I’m not entirely sure that it works yet. I have got a lot of new followers lately (hi!) that I’m fairly sure are here for the beauty content (stay tuned for Urban Decay lushness, more Makeup Revolution, and some fab skincare posts) but I wanted to make this blog about something more, something about me, my family and my life, hence the posts about Aspergers, and Migraines and of course Thor based posts. I think those blog posts make my blog a bit more personal, rather than just being another beauty blog as I was before, not that there is anything wrong with that at all, I just wanted to be a bit different this time round.

I’m not sure what people think, but I’m hoping that if you are just here for the beauty posts, you’ll forgive these posts that seem to go off topic from time to time, and either read them or just skip them.

Anyway, short ramble aside, I thought it was about time for an update on Chloe and whats going on with that issue currently.

The short answer is that nothing much has moved on, we are still on the waiting list for assessment, but we now have a second referral in place with the Child and Adolescent Mental Health Service (CAMHS) to look at the anxiety and panic issues Chloe has been experiencing. Although, thankfully, that is in a lull at the moment and the daily panic attacks have subsided.

A friend recently sent me this link and I am now suspecting this might be what we are dealing with. Pathological Demand Avoidance, but that said, I am not sure how likely it is that this is something that would only occur at home.

Behaviour wise things are still pretty bad and Lola still takes the brunt of it all and I worry about them both a lot.

I reached out again to the ASD team, stressing again how concerned I am about the long term effects on Lola and while they have said they will come back to me on this, they have replied in the interim saying they share my concern and that it may be a safeguarding issue…cue days of high anxiety and panic and waiting for Social Services to turn up on my doorstep. I’m calm and rational again but I still don’t know what they mean by that (although I understand the concept of safeguarding) or what it could mean for us.

I’ve lost my temper with the school, when I went in in my panic about the mention of “safeguarding” they were surprised and said that they didn’t realise it was that much of a problem. Clearly they have not listened to a word I’ve said or paid any attention to my tears over the last two years. The support worker they hooked us up with, the one who offered such promise as he seemed so fantastic has disappeared. He went off to do some kind of placement for a couple of weeks and we never heard from him again. No one contacted us, no one told us until I went in and asked, and they apologised because “they didn’t realise he was so involved with us”… so we are back to having no support at all again. With nothing offered in its place.

And then there’s the dental issues, last week, Chloe had six teeth removed, due to sensory issues she had five seriously decayed teeth and one wobbly one that had been wobbly for nigh on a year. Again, I’ve been flagging up to professionals since she was a baby that there were issues with her teeth and oral hygiene…and now this… and I don’t really see that we won’t be back again in another couple years having more out, because we’ve got no advice on how to help her with this. The operation itself was upsetting, as it would be for any parent, but it was short, the most frightening thing for her was being put to sleep, but for me the most distressing thing was her belief that she wasn’t real when she woke up, she was frantically pinching herself and crying “Am I real” “Am I here”…. awful, I hope we don’t have to endure that again. She’s had that reaction to bad dreams before, woken up and not believed she was alive, thought she was actually dead. It’s a horrible thing for any parent.

As always I feel like I want to stress that despite our issues, I’m truly appreciative of the fact that on a scale, our problems are fairly minor, and I’m thankful for that, so many have it so much worse.

So, time passes but nothing changes…but lets just have it on record, that its not for want of trying on my part! And sometimes, the girls actually seem to like each other.

Beefeater Grandstand review

 

4 responses to “Assessment latest…Chloe’s Journey”

  1. Stephanie says:

    oh poor thing with the dental issues, and how worrying and distressing for you too, hope you get more support soon x

  2. Daniella says:

    There is so much I want to say to you Charlie but I just don’t have the words. I do want to give you a hug though so you know I’m thinking about you.

    I find it so hard to comprehend that in a world where we can send people to the moon, develop life changing drugs and create amazing technology that a family like yours is not getting the help and support it needs. It’s just so difficult to understand and I honestly can’t imagine what it must be like for you.

    • justcharlieg says:

      Thank you so much Daniella, such a kind and lovely comment and gratefully received. I have low stress thresholds I think, but I am truly grateful that we don’t have it worse as so many do. I really mean that. x

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