- Chase up DLA review
- Confirm dietitian appointment
- Arrange OT appointment
- Arrange to visit prospective primary school
- Arrange parents’ meeting with PACE
- Apply to funder for a. driving lessons b. iPad
- Fundraise to cover rehab costs
- Chase up about penetrative damp
- Chase up landlord about Disabled Facilities Grant
I feel like I’m drowning.
- Financial returns for direct payments
- Get thermal socks for Isobel
- Get cutaway cup for Isobel
- Confirm medication delivery with Pharmacyspace
- Book dentist
- Listening/lipreading practice
Is there no end to this?
- Complete SEO posts
- Draft profile interview questions
- Book review
- Preparation notes for CEO meeting
There. That’s my day all mapped out – although of course, that doesn’t include household chores still outstanding: stuff like laundry, washing-up, emptying/loading the dishwasher, sterilising syringes/formula bottles, dusting, cleaning, vacuuming… And please, don’t ask me about the food shop.
It’s amazing how fast my day goes before I realise it. I often feel obliged to stay up well into the small hours just so I can try and cut down my to-do list – I so hate seeing it this long. The only part I’d rather do, to be honest, is the last four items, if only because they give me a break from the monotony.
This is not so much a sign of age as an indication that N and I have too much on our plate. There is nothing we could cross off the list without doing – because they all need to be addressed. (Yes, even the last four items. That’s my livelihood we’re talking about here.)
Driving lessons, thermal socks, an iPad – these are essentials, not luxuries, that we can’t live without.
And thermal socks really are indispensable; we can’t expect Isobel to toughen up during the cold snap. Even with tights and two pairs of socks under her jeans all day, her feet are absolutely freezing at bedtime, simply because she can’t run up and down to keep warm. With so many appointments like the dietitian and the dentist to keep to, it’s unfair and impractical, too, to rely on N as the sole driver the whole time. Just like me, he needs to work. And the iPad? Possibly Isobel’s only chance of communication.
So excuse me for showing my irritation when a parent of a non-disabled child sees me sigh with fatigue and says, “I know exactly how you feel.” No, you don’t.
Parents of non-disabled kids don’t have a to-do list like ours. They don’t have to physically exert themselves in order to carry out their child’s daily routine, because by the time they reach Issy’s age, that child will be able to do all of it independently.
So what if your three-year-old throws temper tantrums? They can at least choose. Isobel doesn’t have that luxury – and you can’t say for sure either that she will, because there’s no knowing what to expect with a CP kid, and it’s not even the prerogative of a parent of a non-disabled child to suggest otherwise. Well, they haven’t had that experience, so how would they know anyway?
Time management doesn’t cover it either. To spread out my to-do list over a fortnight or so would be impossible, because everything has to be ticked off ASAP before the next 5-10 items get added onto it. I’d welcome those new items only if they help us keep our heads above water financially – but the far greater likelihood is that they won’t, because far too many people involved with Isobel don’t come as part of a one-stop shop, so we stand to lose even more potential earnings just chasing them all up individually.
Anyway, to skimp on anything means, ironically, skimping on either our finances or the children’s welfare, particularly Isobel’s – which is the last thing we want to see happen. I’d much rather miss a night’s sleep than let her freeze her bottom off.
Parenting – it goes without saying – is hard work, especially if you’re juggling that with freelance commitments. But (this is the bit that parents of non-disabled children don’t get) parenting a disabled child is even harder work, worse if you have two or more.
Every loving parent sacrifices time for their children. Parents of disabled children sacrifice far more than that. A huge proportion give up their entire livelihood – not because they’re lazy or irresponsible, but because their to-do list has become insurmountable. To make matters worse, there is no infrastructure to cushion them against the mental, social, psychological and financial blow that will serve them. That is why bringing up a disabled child is so expensive, and why parent-carers feel so, so alone.
But how do you explain that to a parent of a non-disabled child? It’s impossible. Sometimes I keep talking and explaining and blogging and writing, and it feels like nobody is listening. Who in my locality can I confide in about this?
Sometimes, when I describe my day to a parent of a non-disabled child (especially if they are themselves non-disabled, or view themselves as such) they roll their eyes or say, “Yeah, yeah, whatever” – sometimes making the wriggly “W” with their fingers – because they can. They probably think I’m complaining too much. But of course they would. It feels too much like hardship, and they’d rather not have anything to do with it.
Well, good for them. They have the means to walk away. I don’t; that’s the point. Neither Isobel, N nor I (no, not even Ben) asked to be in this situation. None of us planned to have a to-do list that feels like somebody’s trying to kill us.
All of which has got me thinking. Beyond the followers who have subscribed – and the family and friends who comment on my links via Facebook, Twitter, LinkedIn and by email – just how many people who read my blog are hearing and/or non-disabled? How many parents of non-disabled children? How many single childless people? And how many of any of these people believe what I’ve just said?
I know I shouldn’t waste time thinking about them, and focus instead on people who care. And let me stress, I value their loyalty more than they will ever know.
But my list has a habit of making me feel walled-in. Returning home from 30 minutes’ switch-off time on the local canal, once again I can feel my shoulders sinking at the very thought of it.
Do you know what happens when you stare at a wall long enough? You start forming shapes and shadows with your mind’s eye. Imagining things. And that’s when harsh reality kicks in – and you realise that you’re staring at the wall because there are many, many more people who don’t care about your crappy to-do list.
Justice will not be served until those who are not affected are as outraged as those who are. Benjamin Franklin
- The horrors of bureaucracy (themostynthomasjournal.com)
- Inclusion in education is an afterthought (themostynthomasjournal.com)