“How was your summer?” The question FASD families dread.
By Sian Jones
Sian is an adoptive parent of two awesome children with FASD. She is currently retraining as a Neurodiversity coach with a view to supporting families navigating this little understood disability. She has a special interest in adopters’ mental health and is passionate about reducing shame and isolation by voicing the difficult feelings.
How was your summer? Such a simple question, but one that reliably fills me with dread. It’s innocent enough, so why does it get to me so much? Because the emotions that underpin a summer holiday loving two children with complex needs are surprisingly difficult to turn into a socially acceptable answer.
How to explain the exhaustion that six weeks of full-on, anxiety-absorbing FASD parenting brings? The battles to get the essentials like showering and dressing done if they’re not linked to the school routine. The endless questioning about the structure of the day. The desperation to do something and yet the extreme unwillingness to leave the house to do it. The hours of groundhog-day debate required to patiently negotiate a plan that is acceptable to both children and the current state of their nervous systems. The irony that when you do eventually manage to leave the house, you’re so frazzled from being your children’s external brain and executive function provider that it takes all the shine off the activity you spent so long facilitating.
How to describe the impact of the relentless bickering, fighting and extreme sibling rivalry? Dear God; the rivalry and competition is wearing. As is the close supervision required because clubs and camps don’t cut it when you’re at senior school, but your children cannot safely co-exist (unless on separate devices in different rooms which you’re fairly certain is frowned upon for six weeks straight). Then there’s the dawning realisation: work and regulated children are mutually exclusive. If you want regulated children, you can’t work. And if you do work, you must then spend four times the desk-period co-regulating and unpicking the conflicting confabulatory aftermath.
How to paint a picture of the chaos that ensues if necessity dictates that you must leave a child unattended whilst you send an urgent work email? The phenomenon that is the teen-toddler brain unattended. The decision to ‘bake’ (think sensory flour- scattering over kitchen surfaces, floor and walls, helpfully trodden through the house by the FASD dog); the hob left on after making a snack; the wooden spoon that falls into the toaster unnoticed and catches on fire; the forgotten toastie cremated along with the toastie-maker; the front door left wide open (yes, really, all genuine extracts from this summer’s lengthy back catalogue). If it weren’t so dangerous, costly and time-consuming to clear up, the ability to unintentionally wreak such havoc in a short space of time would be impressive.
How to do justice to the ongoing loss or chronic sorrow that the summer holidays can bring you as a parent of a child with FASD? The gap between what you imagined and what’s possible. You’ll know what’s most likely to trigger an unexpected pang of grief for you, but there are two main themes for me. In pole position is the apparent ease with which neuro-typical families move through the world. None of the SWAT team levels of hyper-vigilance we must deploy to get through an outing without edginess levels escalating to storming off, expletives or unfiltered remarks about other people’s perceived inadequacies.
A close second is seeing people teaming up: children playing with friends, discussing sleepovers and get togethers; parents making impromptu plans with other families; grandparents or family members taking grandchildren for the week. Our children have very few friends and we have no one to provide any respite care. The playdates, house full of children, relationships with other parents and informal childcare swaps I’d envisaged based on my own childhood have not come to pass. Nor have the close wider-family relationships I enjoyed as a child. The isolation all this brings, and the accompanying shame, is hard to describe unless you’ve lived it.
Sure, there are some lovely moments. Situations conquered which you couldn’t manage last summer. Occasional outings which everyone enjoys. The odd purple patch when everyone is at their very best at the same time. Adventures in the river or on dog walks. Breathtaking pride and love. Laughter and fun even. But these are invariably tinged with guilt - that you couldn’t engineer more of them; that you couldn’t relax into them enough; that despite their loveliness they haven’t altered the overall flavour of the summer; that just yesterday you were silently bemoaning your lot and questioning your ability to manage another three weeks ….
And then there’s the real killer-emotion that usually kicks in towards the end of the holidays: relief, guilt’s number one bedfellow. Relief that you’ve survived. Relief that school is imminent. Relief that you will finally have space to think, breathe, rest and work. Which of course gives judgey old guilt plenty more ammunition to beat you over the head with.
Which is why, of course, your response to ‘How was your summer?’ is usually, ‘okay thanks’, or your own equally nondescript version. Okay is easier than fearing being judged or people thinking you’re a bad parent. Okay is feeling ashamed to tell anyone what it’s really like (who’d believe a word of it anyway?), protecting your children, and carrying way more than people realise. I don’t know the personal cost to you of getting through a summer unsupported, but I suspect it’s not at all okay. Which makes your necessarily disingenuous okay feel like the worst kind of betrayal of yourself.
‘How was your summer?’ is not the right question. ‘How are you really doing?’ is the question you need at the end of the summer holidays. And someone to listen, empathise, support and advise you who really gets it. Which is where the lovely folk at Neurowise come in……
Book your place on our upcoming therapeutic coaching place here