So I am am currently on a quest to find adequate childcare for my disabled daughter and her sister - by this I mean I am looking for a holiday and before and after school club that is able and capable of caring for my child whilst meeting her needs but allowing our family the flexible childcare we need to allow both myself and their dad to work in our current chosen careers.
Wow... I knew it wasn't going to be easy but what a minefield it truly is!
Up until recently I have accepted the standard response I get that childcare providers such as holiday clubs and breakfast clubs have given "well she will need one to one which means we need to employ more staff and that will need to be funded by you or social care"
We have not explored social care previously as I don't think we will meet the criteria required to access the funding. But perhaps we were wrong to assume this.
The other side of this is that she has been heavily dependant on support to self care. Toileting has always been a "can you help me" scenario, especially when getting on and off adult sized loos and with hygiene. But this has changed over the last few months. After Christmas my little angel was 'buggy bound' due to some problems with her feet. She had to be manually manoeuvred around the house and lifted on and off the toilet. She was off school for 10 days as a result of the impact this had on the support they were able to offer. This situation was on and off for three months. It wasn't until Easter that she was fully independently mobile again. I was worried sick, crying every night, and panicking about the impact this would have on her independence at home and school as well as her confidence and friendships. I needn't have worried as it actually had the opposite effect than I expected. She is more determined to be independant, which has led to some leaps in her confidence and ability to complete some challenging tasks. Her friends saw her vulnerabilities, which appears to have strengthened their friendships as they push her to do more for herself but are there by her side to step in at any moment to help her out. But I digress.
This has all led to her being less reliant on outside help and support. Which means this whole "she will need one to one" speel will no longer wash with me as that is simply not true. At school where her limitations impact her education, yes she needs one to one constantly! But in a club where she is free to just do as she pleases, like at home, one to one is not needed all the time. Yes there may be times where she might ask for extra help, like wiping herself or cutting up food, but this very rarely happens now as she is so determined to do things alone.
So I have been on a hunt for a childcare option that can work for us. I know we live in a rural county where we struggle for variety and locality in some areas but still, it can't be too hard can it?
Yes, the answer is definitely yes, it can be really hard and worse!
Being told your child is "too much for us to cope with" is heart breaking. Seeing the awkwardness in someone's eyes as they listen to you explain some of the support needs my child has, trying to make her sound so easy to care for whilst reiterating the important bits that can be the difference between life and death with her. It's really crap if I'm honest. Once people meet her they see how easy it is to care for her, but on paper she reads like a complex insurance claim waiting to happen! Yes her conditions are complicated, their management requires confidence and some in depth understanding, but you know what, if in doubt call 999 then call me. It's not complicated to do that much... I have to do this day in and day out. Often people say "but she's your daughter, you choose to do this" erm no I didn't choose to be a parent carer to a disabled child. I chose to be a parent, the carer part came along with no input from me (apart from the near death experience as my body rejected her so badly it started to shut itself down)
And while we are on the subject of choice, I often get told "what about reasonable adjustments? Don't they have to make them for disabled people?" Well yes, we could pursue that path, but after being told "oh gosh I don't think we could meet her needs" or "wow, that's a scary prospect isn't it" you kind of loose confidence in the provider to be able to WANT to care for my child.
So where does this leave us? Well child,infers are an option, but they charge a freaking fortune when you say the word disabled as they have to reduce their ratios in accordance with Ofsted (not sure how much of that is true... I am trying to find out and will update you all when I'm clear on the subject) or they are not flexible enough to meet our needs.
So what's the answer? I could work from home... Tried that and there's only so much motivation can do to combat a demanding seven year old, plus I like to leave work at work when I can! Or I could not work... But I have a right to be my own person, to provide for my family. Plus the work I do actually helps to improve these crappy situations our family find ourselves in, so why would I stop doing that? Plus what example is that for my children? Giving up so easily...
I will find a way. I will get the right childcare. I will also keep harping on about this to the local authority and highlight the need for inclusion to be improved!
C'mon scoob, let's solove this mystery!
