The whole of exhaustion for sen parents
I never knew the extent of my exhaustion until I wasn’t exhausted anymore.
I’m talking about the kind of exhaustion you don’t even know you have and even if you do, as a sen (special educational needs) parent there is very little you or anyone else for that matter can do about it, and you must carry on.
All parenting is exhausting at times and for sen parents the added intensity, complication, sleep deprivation, vigilance and care that goes way beyond (and for some of us for a lifetime longer than just the toddler years or the teens), we do willingly, honestly we do.
Comments people make such as saying they don’t know how we do it/we have such patience/we are amazing parents etc. are um, difficult, for me anyway, to deal with. We HAVE TO do it, they are OUR children, we learn the patience that is so hard because we HAVE TO and we almost break ourselves trying to make sure needs are met that translates as yup, amazing, resilient, persistent, unconditional parents because WE HAVE TO. If it were you, you’d be doing exactly the same, I'm sure.
Everyone has their breaking points & individual personalities & every parent makes mistakes. I’m ashamed of how I have behaved in certain situations with my nonverbal autistic son regarding everything to do with me and nothing to do with him. Nothing can prepare you for what you sometimes have to witness and experience with your own special needs child especially when you don't know how to or can't help them. I haven’t learned to forgive myself yet either, I almost need the guilt because I feel I deserve it hence the skin prickles when people compliment me on my parenting!
Whilst we are totally accepting of our child and unconditional in our love, support and care of him, what we and all sen parents never anticipated was the lengthy, frustrating, difficult, exasperating, depressing and never-ending fight for services to meet our child’s education, health & care needs. It is nothing short of a minefield, requires many, many almost full-time work hours dedicated to phone calls and paperwork almost all of which is negative box ticking about what your child cannot do. Adding a very hefty layer of deep, deep concern for our children's days, for their futures.
It is all this behind the scenes/nothing to do with or pin on our actual autistic children that I think others and often autistic people/adults themselves who dislike us moaning and groaning about the hardships, do not perhaps consider.
No-one wants to actually meet and get to know who your child is. Nor are they really considering what the best possible setting and/or therapy for your child is either, it’s an inundated system based solely on costs & fobbing parents off from one underfunded, low quality staff, outsourced department after the next, after next, after the next, with no-one to explain or hold your hand through it all.
A system like this almost certainly results in children in the wrong schools causing catastrophic levels of anxiety & stress on the children & their parents that then stretches the system even more trying to fix it & find the right jolly school for the child, whose parents have been trying to tell them all along but, who do not get listened to unless they can afford a lawyer.
The most criminal part of all of this is children and teens ending up in the wrong school with increasing anxieties, being so unhappy and making no progress for not half a term, not a whole term but, whole years waiting on the local authority!
That is where the bulk of the exhaustion is for me and I imagine most other sen parents. As healthy as possible, happy & in the right school is key. Being with, raising & caring for our special needs children is what we do every day and can and will do until the cows come home (for as long as we live, in literal speak). In mine and many others cases, we also know we will be doing it for rest of our lives/as long as we are able and for the most part, we are totally fine with that too. It is what it is. We love them. I certainly wouldn't change my sons autism, it is part of who he is & what makes him the incredible human being that he is.
I’ve yet to mention the family, social and public aspects…Shall I mention those? Oh, go on then. I wonder if anyone ever stops to consider what it fees like to be stared at (for being who you are and not being able to be anything else)? What it feels like to be the recipient, after your child, of judgemental looks for behaviours they know nothing about, every single time you step out your front door? What it feels like to have your child called a “freak” in public (Yup, Gatwick airport 2019). What it feels like to have someone say at a dinner party “have you given yourself time to grieve for the son you are never going to have”? (Yup, 2016). What if feels like to have another Mum at the local swimming pool drag her son away from yours telling you “autism is everyone’s excuse these days, you’re a sh*t Mum and he needs discipline”? (British Club, Singapore 2014). I could go on, the dirty looks are almost more hurtful as you never get the chance to defend your child or simply start a conversation and educate them.
This is why I’m all about the T-shirts and visual cues...it’s an invisible disability and people need a heads-up. For the most part people are lovely, empathetic and understanding and they want to learn, they are just not sure whether or not to ask. Let’s give them a hand in setting their expectations and inviting them via helpful, positive visual cues so that they feel ok to ask. There will always be those who don’t care and don’t want to learn, you’ll have to Matrix-screen style swipe away the pain and hurt because it will do you no good.
Exhaustion is physical, things like sleep deprivation and just being so tired of the unpredictable days & hyper vigilance. Exhaustion is mental, from having to constantly be learning on the go and figuring out a child whose brain is not wired the same way as yours. Constant and late into the night detective work & analysing. Handling all that paperwork, schools, councils, doctors, therapists, friendships, siblings, family dynamics, your partner...Exhaustion is emotional, dealing with the strength of your own love for, defence & protection of a special child. Preparing them for their adult lives, the guilt, the isolation, the loneliness in not being understood & never ever feeling like you are winning, getting it right, finding consistency & confidence in your ability to do right by your child, honouring who they are and what they came into this world to be.
All of this is going to impact, your life yes, but also, your actual body. And what could be more important for those planning on out-living their sen children than their health? My son has changed schools to a part residential so, for the first time in 10 years I have been forced to let go and relax. Sounds idyllic doesn't it? Three months in, I still cannot get to sleep at night and am in a total state of shock over what the past 10 years of crashing into bed, falling asleep in 10 seconds exhausted (x3 from above), awake again, fully, 4-6hrs later & snatching odd cat-naps during the days, has done to me!
Urging parents and carers here and now, today, to pay attention to their own stress levels and health. Note I do not say ‘self care’, I cannot stand those words, as if we can just whizz off to a spa for the day or hand over our special needs child to granny for the weekend and return home to what? I am meaning the very small things like allowing yourself to think about yourself for a few minutes at least once a day; making yourself take 10mins to have a coffee without thinking about anything and without your phone, risky I know; taking a few minutes to arm yourself by planting your feet on the side of the bed before you dress and mentally wrapping a protective layer around your heart, breathing well a few times and then starting your day, again, after that 2am stint...
Perhaps I'll start an autism parents 'retreat' at my home where parents can book slots to drop-in, chat, cry, punch a bean bag, sleep in a darkened room for an hour, have a coffee & leave again. No judgements made, no questions asked.