Dear Mrs May
Half term sucks. It is not a yay-we-get-to-lie-in-and-laze-about scenario. Not when you have a B, who, from the moment he wakes up to the moment he goes to sleep, needs line of sight supervision. His favourite activity at the moment is posting. All the shit, in all the places. I am done with fishing tiny random lego pieces out from behind the radiator, un-wedging books from the miniscule gap between the DVD player and the unit, and risking my actual life by blindly groping around for toy cars amidst the wires behind the TV. The most annoying thing? The posting of random items IN the bedside lamps. Why? Sweet Lord, why? I have no idea what runs through that boy's head. All I know is such obsessive chaos does not a chilled half term make.
One thing that often escapes the radar of typical families is the complete lack of childcare for kids with additional needs. As in, regular childcare that we can ring up and book onto does not exist. I'll just let that sink in for a minute, in all its discriminatory glory. The array of options for typical kiddos is vast, and despite BH putting on a massive whinge fest at the thought of Supercamps, or the local leisure centre's Nerf Wars Day (I know-I'm petitioning them to run an adult version..), she does actually enjoy it. And more to the point, it exists. Parents who don't have the luxury of taking the school holidays off can rest easy that their little darlings have a range of fun filled activities to choose from while they work. For families of special needs children, this just isn't the deal. I get it. I do. The high cost of providing a trained one-to-one worker compared to that same one worker being legally able to herd ten kids is obviously inefficient. But here's the thing. On paper, there's legislation preventing such archaic discrimination. As children with additional needs, our kids' rights to equal opportunities and inclusion in 'mainstream' activities (like childcare and clubs) are enshrined in the fuck off massive Disability Bible, otherwise known as the SEN Code of Practice. As parents and carers of children with additional needs, our rights to access education and employment are legally protected in the Carer's Act. Those things go hand in hand.
So what are we meant to do Mrs May? On the one hand, you're pulling financial benefits to make work worth it. With the other hand, you offer no support for the families like ours who do not have the luxury of surviving on one income, but who also do not have the luxury of working to bring home the bacon because there's no childcare provision. For me, this is where it gets personal. I have a strong work ethic. I apply myself 150% to whatever I happen to be doing at any given time. I gave up a decade to raise kids. TEN WHOLE YEARS of shitty arses, snotty noses, screamy meltdowns, and unsuccessfully attempting to re-dress Barbie after her clothes got pulled off in some kinky teddy bear's picnic scenario. Have you ever tried to put a bikini on a Barbie? Fucksake. It's possibly THE biggest fine motor challenge out there. I never did manage it. Add to that the constant care of a disabled child, complete with a myriad of appointments, relentless chaos, complex medical issues and negotiating completely unknown support service territory you never even knew existed and I'm proud to say, my skillset is fairly inspired. MI5 level research and negotiation capabilities. Check. Epic admin skills. Check. Daily clinical decision making skills. Check. Anger management skills. Double check - special thanks to the Borough of Poole for that, whose shitty meetings definitely deserve credit for the near-zen state I can now function in despite raging internal fire. And yet, the skillset I've developed counts for nothing. At least not in a professional capacity. In fact, I am disadvantaged and penalised on job applications for my gaps in employment. GAPS IN EMPLOYMENT?! Apologies. I've clearly been sitting around on my fat arse watching Jezza Kyle for the last decade. My bad.
Let's get real Theresa. I would like nothing more than to work. Sitting for a whole ten minutes to drink tea on a break sounds like heaven. Spending time contributing to something other than preventing my children's apparent death wish would be a fuckin' holiday. But since I have no transferable skills, at least none that anyone values, I am unfortunately royally screwed. Oh and there's the small matter of practically enforcing all that lovely legislation on inclusive childcare and equal rights for all. You seem to forget to do that. So here's what I did, Ms May. I got myself into debt I can't afford and did a degree. Psychology, if you're interested. And before you ask, no, I can't read your mind. Against all the odds, I'm juggling a degree, while still managing kids, a million appointments, daily battles, and specifically a child that needs 24-7 care all the time. All. The. Time. No tea breaks for me, although some days I get lucky and manage to inhale a coffee in between a wriggly pad change and a tube feed.
I'm in my final year Theresa. It's going good. I'm miraculously pulling off a first for the time being. But I am shitting a brick as to what next. If there is (illegally) no option of childcare for my disabled child, then is all my hard work worth nothing? Surely you, with your hardworking Tory family values, can see that this sucks. It's unfair, and it further disadvantages an already vulnerable sub-group of society. I am not happy relying on the state. Especially a Conservative-led state where economic efficiency is the measure of everything. Sorry we don't fit your income-generating criteria. BUT, you're not above the law. Keep your local governments accountable to enforcing this stuff. Stop assuming we are happy to sacrifice any personal ambitions just because we have kids who need more than you are willing to provide. In case you'd forgotten - which, in fairness, would be forgivable given the current authoritarian state the world finds itself in - it's 2017. Not 1917. So please, Mrs May, hear this plea. Put us on an equal footing with all the other regular families out there. We want to contribute. We want a chance to change the world too. And to be perfectly honest, we're probably some of the best people for the job.
One thing that often escapes the radar of typical families is the complete lack of childcare for kids with additional needs. As in, regular childcare that we can ring up and book onto does not exist. I'll just let that sink in for a minute, in all its discriminatory glory. The array of options for typical kiddos is vast, and despite BH putting on a massive whinge fest at the thought of Supercamps, or the local leisure centre's Nerf Wars Day (I know-I'm petitioning them to run an adult version..), she does actually enjoy it. And more to the point, it exists. Parents who don't have the luxury of taking the school holidays off can rest easy that their little darlings have a range of fun filled activities to choose from while they work. For families of special needs children, this just isn't the deal. I get it. I do. The high cost of providing a trained one-to-one worker compared to that same one worker being legally able to herd ten kids is obviously inefficient. But here's the thing. On paper, there's legislation preventing such archaic discrimination. As children with additional needs, our kids' rights to equal opportunities and inclusion in 'mainstream' activities (like childcare and clubs) are enshrined in the fuck off massive Disability Bible, otherwise known as the SEN Code of Practice. As parents and carers of children with additional needs, our rights to access education and employment are legally protected in the Carer's Act. Those things go hand in hand.
So what are we meant to do Mrs May? On the one hand, you're pulling financial benefits to make work worth it. With the other hand, you offer no support for the families like ours who do not have the luxury of surviving on one income, but who also do not have the luxury of working to bring home the bacon because there's no childcare provision. For me, this is where it gets personal. I have a strong work ethic. I apply myself 150% to whatever I happen to be doing at any given time. I gave up a decade to raise kids. TEN WHOLE YEARS of shitty arses, snotty noses, screamy meltdowns, and unsuccessfully attempting to re-dress Barbie after her clothes got pulled off in some kinky teddy bear's picnic scenario. Have you ever tried to put a bikini on a Barbie? Fucksake. It's possibly THE biggest fine motor challenge out there. I never did manage it. Add to that the constant care of a disabled child, complete with a myriad of appointments, relentless chaos, complex medical issues and negotiating completely unknown support service territory you never even knew existed and I'm proud to say, my skillset is fairly inspired. MI5 level research and negotiation capabilities. Check. Epic admin skills. Check. Daily clinical decision making skills. Check. Anger management skills. Double check - special thanks to the Borough of Poole for that, whose shitty meetings definitely deserve credit for the near-zen state I can now function in despite raging internal fire. And yet, the skillset I've developed counts for nothing. At least not in a professional capacity. In fact, I am disadvantaged and penalised on job applications for my gaps in employment. GAPS IN EMPLOYMENT?! Apologies. I've clearly been sitting around on my fat arse watching Jezza Kyle for the last decade. My bad.
Let's get real Theresa. I would like nothing more than to work. Sitting for a whole ten minutes to drink tea on a break sounds like heaven. Spending time contributing to something other than preventing my children's apparent death wish would be a fuckin' holiday. But since I have no transferable skills, at least none that anyone values, I am unfortunately royally screwed. Oh and there's the small matter of practically enforcing all that lovely legislation on inclusive childcare and equal rights for all. You seem to forget to do that. So here's what I did, Ms May. I got myself into debt I can't afford and did a degree. Psychology, if you're interested. And before you ask, no, I can't read your mind. Against all the odds, I'm juggling a degree, while still managing kids, a million appointments, daily battles, and specifically a child that needs 24-7 care all the time. All. The. Time. No tea breaks for me, although some days I get lucky and manage to inhale a coffee in between a wriggly pad change and a tube feed.
I'm in my final year Theresa. It's going good. I'm miraculously pulling off a first for the time being. But I am shitting a brick as to what next. If there is (illegally) no option of childcare for my disabled child, then is all my hard work worth nothing? Surely you, with your hardworking Tory family values, can see that this sucks. It's unfair, and it further disadvantages an already vulnerable sub-group of society. I am not happy relying on the state. Especially a Conservative-led state where economic efficiency is the measure of everything. Sorry we don't fit your income-generating criteria. BUT, you're not above the law. Keep your local governments accountable to enforcing this stuff. Stop assuming we are happy to sacrifice any personal ambitions just because we have kids who need more than you are willing to provide. In case you'd forgotten - which, in fairness, would be forgivable given the current authoritarian state the world finds itself in - it's 2017. Not 1917. So please, Mrs May, hear this plea. Put us on an equal footing with all the other regular families out there. We want to contribute. We want a chance to change the world too. And to be perfectly honest, we're probably some of the best people for the job.
Love it!! Hope she reads this xx
ReplyDeleteShe has no spare time, what with ruining the country and snuggling up with Trump. But I might just tweet her anyway. :)
DeleteI hope she reads it too.
ReplyDelete:D Big love Claire. x
DeleteI know exactly what you're on about. I have watched and have tried to support a close friend through a very similar experience. Totally understand the skill set check list and have witnessed 1st hand the battles she has had to endure with 'professionals' whose top priority it seems, is to spend as little as possible or pass the buck on to someone else. Infuriating, I feel your pain! Ps well done and good luck with your degree (mental health don't get me started on that one!)
ReplyDeleteYES! The whole.. this is someone else's responsibility. Er, nope, pretty sure it's yours. Drives me insane. And so much on the spending as little as possible but no one has the foresight to see that actually spending money on ensuring sufficient childcare provision (and respite, and other such services) will actually BENEFIT the economy in the long run when all those people are in good health and working....
Delete