We were offered short breaks support when Holly was very young. At first 1:1 and then later 2:1. Now it took me a couple of years to feel comfortable with this- well I say that but not sure I actually feel completely comfortable with it at all! I will never forget that feeling of leaving my vulnerable, autistic child with learning difficulties with a complete stranger!!! But over the years it’s got harder to keep up the intensive 1:1 full attention that Holly needs without becoming physically and mentally exhausted. So any help at all became very much appreciated.
But over the years we have had many many carers. So many that I can see the signs that they’re going to leave or quit way before it happens now! The little gestures, the reactions to Hollys behaviour, the odd comments. I know it’s coming!! The “sorry but we are going to have to withdraw our service … we are no longer able to keep Holly or our staff safe … we don’t think our service is appropriate… etc … etc” I’ve heard all these phrases or similar for the last 10 years! Which ok I fully understand. Yes it’s bloody hard work! It’s relentless! It’s physically demanding and mentally demanding as you can’t let your guard down for a second! But having so many people quit or move on it does start to feel personal. And I have had thoughts like “Nobody wants her”, “Nobody cares about her”etc.
Now don’t get me wrong I admire anyone wanting to go into this line of work and we have met some absolutely amazing people/carers too who have moved on for other reasons, some I am honoured to call my friends. And I always say the good ones always pop up again! There are a few people that we have met several times in different places or under different guises. And some we still keep in touch with. ❤️ I personally think that generally carers are undervalued and most definitely underpaid! Lets face it… to look after Holly I think you sometimes need danger money! The people looking after Holly need to be specialists in certain areas – we know – you can’t just ask anyone to look after Holly. They need to have a certain personality, resilience, patience and a caring nature, they need learning disability and autism training as a minimum or it just doesn’t work (we know from Experience) And if you need 2:1 you can’t just expect anyone to just turn up. We know from experience that it has to be two people who already get on (or at least know each other!!) as Holly will sense the divide before they start!
Now we’ve struggled the last few years to get any carers at all. That’s how Holly ended up in full time residential care. That all went wrong and now she’s home again. Something else that didn’t work out.
What is really sad is that Holly makes attachments to some of these people so she mentions different peoples names mostly I think the ones that she liked or she misses and this also includes other children she’s got to know at respite. Occasionally we find a photo of a carer and she’ll say their name and then “momoger?” which means ‘tomorrow’ and then of course we have to explain that she won’t see them.
I think we’ve had that many rejections, refusals and let downs that I am now very wary of any help- carers, placements etc. And when we do get new carers or placement interests I can’t get my hopes up until I know they are definitely working or happening.
LATEST UPDATE – Good news! Holly has a new placement starting in a few weeks and even though I know this is the best thing for all of us and this is different placement , in the back of my mind I can’t help but think we’ve been here before and I feel anxious that it’s going to fall through again. I know I’ve also got to through all the emotions again like last time. (See link to previous blog at the end) But I have to be positive and believe it will work. The staff are lovely and are already working hard to get to know Holly and make it work. For Holly it’s the people who are important. She’s interested in them, she wants to get to know them. I suppose over the last 10 years all we’ve really wanted is people to accept, understand, get to know and just like Holly ❤️❤️❤️❤️
I’ll keep you all updated.
Previous blog My head’s a shed
Still all was good but then the afternoon went downhill! Let’s just say sometimes the help in the home is not always helpful and turns out to be more stressful than without it. So as soon as Holly went to bed I popped out for much needed supplies – tonic and vanilla slices!
Mummy Jet 