Why are the parents of disabled children always so tired? There are all the obvious reasons of course: so little sleep, so much paperwork; too many hospital stays, too much wine, cake, and coffee… but there’s one reason that I haven’t seen discussed so often: we spend so much time thinking about the future.
How often do you think about the future? About the trajectory life is likely to take? Do you feel prepared? Perhaps you have plans to travel the world, take up a hobby, or give something back by volunteering? Maybe you worry about how things will turn out, or maybe you live in the moment. We’re all aware that life often doesn’t turn out as we expect. That even the best laid plans don’t prepare us for what lies ahead. That’s why we make preparations that cover a wide range of scenarios: we put aside savings, start a pension, make a will, take photos, get vaccinated, … Preparing for the future is tiring. Worrying about the future is tiring. But hopefully once we’ve prepared a little, we can stop worrying quite so much, and get on with enjoying life in the moment.
But what if there are several likely scenarios that all require very different preparations? Physically, emotionally, financially, …? Preparing for, and worrying about, multiple, wildly differing futures is exhausting. That’s what many parents like us have to do. We have to think about too many futures.
There’s the one where you continue caring for your child as they grow up and grow old. In this future, you have to prepare your child and yourself for a long term stay in the big, wide world. You have to make sure your child gets all the therapy, does all the exercises, no matter how unpleasant, that will set their body and mind up for the healthiest adulthood. You have to consider the surgeries that may benefit them longer term, no matter how risky and painful in the present. You may have to prioritise postural maintenance over cosy cuddles, practice and practice and practice over rest and relaxation.
You have to plan and prepare for transitions, for secondary school, for adult services, for PIP assessments. You have to ensure your house is adapted to meet your child’s needs as they get larger and heavier. You likely have to find funding for a proportion of these adaptations, particularly if you want them to be suitable for the rest of your family as well. You may try to see as much of the world as you can while your child is little, while you can manage without a hoist and a changing bed, before the world starts closing in around us.
You have to prepare yourself financially, for the fact that you may never again be able to work full-time ,or at all. You have to look after your own physical and mental health, for the long term. You try to make time to stay physically fit and strong. You may need to seek out, and fight for, respite options before you want or need them, because you know you’ll will need them, and accessing support can take years, if you qualify at all.
You start battles for the things you know your child and others like them will need in the future – accessible buildings, changing places toilets, better public transport, parking spaces. You fight the ever harder battles against cuts, austerity, stigma, ignorance, and hate.
You worry about having to care for both your parents and your child. You worry for your child’s siblings, whether they will be forced to compromise their own future plans. You fear for the future of your relationship with your partner. You fear becoming more and more isolated within your community. Yet you hope that this future comes true.
Then, there’s the one where you lose your child too soon. You try not to think about this, but sometimes it pops into your head and catches you unawares. And you know you have to prepare for this scenario too: you have to focus on making memories fast. On going places, taking photos, snatching cuddles. On making more of an effort to see friends and family. You skip respite sessions because you don’t dare lose a minute together. You struggle on without the adaptations you need because later they will just be painful reminders. You neglect your own health – there’ll be plenty of time for that later.
But at the same time you have to prepare for life after. You keep your career going because you’ll need it. You try to subtly prepare your child’s siblings for the loss, as if anyone could ever be prepared. You wonder how you yourself will cope with the loss, with the lack of purpose, when your whole life has centred around being a carer. You think about end-of-life care. You make a list of all the things that will need to be done – notify the DWP, hand back the Motability car, cancel the endless deliveries of syringes and feeds, … You plan funerals in your head. You probably think about funerals too much.
Scariest of all, there’s the one where your child outlives you. I think many of us bury our heads in the sand when it comes to this one. The future is just too grim, the outlook too bleak. There are too many horror-stories and not enough examples of best practice. But, prepare for it you must. Your child’s siblings mustn’t feel obliged to take on a parents’ role caring for him; can you make sure everything is in place so they don’t have to?
There are the complicated financial and legal preparations: wills, trust funds, guardianship, and power of attorney. There are practical arrangements. Everything must be documented: care plans, therapy schedules, medications, likes and dislikes, the intricacies of communication and how your child shows discomfort, pain, and distress. You can write care plans and make digital passports but what if you forget something? How to give NP-suction through his twisted airway … how he says hello … how to tell if he’s tired … how to pass on the things we know only by instinct and intuition that can’t be written or said …?
Without you, who will make sure your child is not only fed and clothed and medicated, but happy, loved, and befriended? Who will make sure he has contact with his friends, remains known in his community? You need to do as much as you can now to build relationships, to help him make friends with his neurotypical peers, to make sure he’s widely known in the community so that there are as many folks as possible looking out for him.
And, you have to prepare for all these futures now, at the same time, together, because failing to prepare for any of them is just too risky. Or at least you should prepare for them, and if you don’t feel adequately prepared you worry and stress all the more. You may even fear them. What if you fear all of them? What if you feel guilty for hoping one of them comes true?
But there is a fourth future, one I until recently had no concept of (thanks, Partners in Policymaking). One where your child grows and thrives, makes friends, and is known, loved, and valued in your community. Where it’s no longer all on you. Where your child teaches you and all those around him; where your community becomes a better place because of what he teaches. Where his siblings become not duty-bound carers but gentle warriors. Where people you hardly know surprise you by independently making changes towards inclusion and accessibility. Where your son brings people into your lives that you would otherwise never have met but who become your best friends and your closest allies. Where you learn new skills, make new priorities, and realise potential you never knew you had. There are still preparations to be made, of course, but this is a future filled with dreams not fears. Where, whether your own child lives or dies, together we build a better world for everyone.