I am a working parent of a disabled child.
*Waves* Hi, me again. Still here. Still stitching it together.
I have blogged before about how much I enjoy my work. Need the (whispers it) money. And with Big, well, I still saw a career ahead of me, saw my children and my work dancing together in beautiful symbiosis. A wonderful mix of compassionate employer and sensibly priced easily-available childcare.
Then Small arrived.
Small, who emotionally floored me for a year; Small with his multitude of hospital appointments; Small, with the germs that knocked him for six. No three day cold for him, no, two weeks and you might dodge A&E if you’re lucky.
Small definitely complicated things.
Would anyone still like to give me a job…?
Staggeringly, they did. I’ve had two fantastic employers for whom part time work has suited both them and me and when things have made life tricky (see: hospital appointments, 2 week colds) they have been sympathetic. And childcare? What of childcare? I realise, speaking to other parents of disabled children, that we have been lucky. Small attends nursery for 30 hours per week – including school holidays – and the additional funding he qualifies for is put towards his 1:1. Who we love. Who he loves. Who puts him first – every single time.
However… Small starts school this year, and all this carefully constructed work/ life balance will have to be re-built. Re-thought. A new jigsaw. And it troubles me.
When I ask what provision there is for after school care or holiday cover for children like my son, information is scant. Childcare itself, frankly, is scant. The SN school he goes to runs a holiday club… during one week of the summer holidays. None of the childminders here take SN kids, ‘Oh, wait, one did… but no, she’s retired. There is another one in [names town 20 minutes away]?’ No breakfast/ after-school club is available.
Our only option, as I see it, will be someone nanny-like, someone to take him home from school, to make him and his sister tea, at which point I can re-enter and takeover the chaos that is bedtime. These are very specific hours, with a very specific skillset – I’m hopeful, but, you know…this is a big ask. And not a cheap one. At a time when my childcare bills should be falling, they will go in the opposite direction. Yay. No, wait, that’s not right… So, I am starting my search early because I want to get this right, I do not want to be one of the staggering 84% of mothers of disabled kids who cannot find a way to work. I’ve put in a lot of hours here and this cash is much needed. I didn’t put in those hours, learn this much, come this far to stop working due to lack of suitable childcare. Due to lack of care of their parents. We are forgotten sometimes. Us – our needs.
We – we parents of disabled children – blogged about the trickiness of working before. You can read about this here:
What is quite exciting is that there is now a parliamentary inquiry looking into the costs of childcare for disabled children. If you’re the parent of a disabled child, you can find it here and it’s your chance to make yourself heard:
You’ll have heard this stat before, but it’s worth repeating: childcare for disabled children is 3 times more expensive that that for neuro-typical children. You can see why, because the ratios will need to be smaller – one to one, sometimes one to two – and more training will be needed. It’s at this point I throw my toys from the pram and shout ‘This is NOT FAIR’. We are not asking for special treatment. We are asking – as we ask every day for our kids – to have a level playing field. The bottom line is: make this childcare affordable and you will be rewarded in taxes. And more emotionally contented members of society. (Who may vote for you next time). Surely this benefits everyone.
We want to work, we want to be able to afford to work, we would like to contribute. We have years of experience stored up to be used.
We have something to give. Let us. Enable us.
Because the value you will gain from us – emotionally, financially – has got to, just got to, outweigh the costs – emotional, financial – of neglecting us.
We are worth it. Let us know that we are.
We are linked up with the wonderful premmeditations who is hosting a blog link for all parents (working or otherwise) of disabled children to air their view on childcare provision: