Whether it’s due to obsessive habits, oppositional behaviours, delayed speech, hyperactivity, non-responsiveness, selective eating, sleep problems, digestive issues, seizures… or trying to reconcile the ambiguity of what lies ahead – it’s safe to say that most ASD parents know what it is to be on high alert.
According to a government review (Roberts & Prior 2006, p73) parents of children with autism experience far greater stress than those of other disabilities and are at higher risk for psychological disorders.
It seems counter-intuitive to think of your own wellbeing when your child has big needs. I should know – I did not heed the good advice that was given me following my son’s diagnosis 6 years ago. One thyroidectomy later I’m here making self-care a rather large focus of my work with parents. Just like the doctor told me – and as they tell you when you board an aircraft “you have to put the mask on yourself first before you can help the children.”
Imagine you are interviewing for a babysitter; someone to look after your child with extra needs. Then imagine that each babysitter who turns up is worn out and exhausted, sleep deprived, stressed and overwhelmed, and has a full plate with absolutely no spaces. You wouldn’t even consider them, would you?
Yet this is where many of us find ourselves – and the truth is we can only be good for the long haul if we learn to nurture ourselves along the way.
Self-care is not about getting your nails done, or dropping everything selfishly while your child is screaming and desperate for help. I know that’s how it can sound – and suggesting self-care to a busy mum can be a little bit like asking this woman to juggle yet another plate…
Take a look at what the body is doing when we’re in high alert…
Self-care is about keeping up your strength so that you don’t burn out and get sick.
It’s about being in the best shape possible; physically, emotionally, and psychologically – because you are your child’s main carer… they need you to stick around for the long haul.
I’ve heard it said more than once that managing a child’s autism can be like running a small business (Exkorn, 2005) and I agree. Except it can be harder. With all due respect, no matter how strong your work ethic or passion for what you do – the stakes are so much higher in the business of managing your child. I’ve seen highly competent women fall in a heap still scratching their heads “but I run an organisation with 300 staff no problem…?? ”
For a start, our ASD kids do not seem to naturally move towards autonomy as do NT (neurotypical) children. We have to teach them to do that – and first we have to learn to teach them to do that (via early intervention therapists). Our parental instincts don’t equip us with the specialist techniques required to bring out language, encourage reciprocity, shared experience, and foster social skills.
All of this takes time and energy… liaising with therapists, reading handouts, observing techniques and then trying them out, and relaying everything to the partner who was unable to attend sessions (as is often the case). It takes research, it takes learning new skills, and using brain muscles we never knew we had. There’s that joke about the ASD mum screaming “I’m sick of being everyone’s frontal lobe!”
Think about it – additional needs means we are attending to those additional needs and therefore we are in need of more sustenance ourselves. Doesn’t that make sense?
I have a strong work ethic and was raised by a single mum who never took holidays; I set out regulating myself exactly the same way that was modelled to me but discovered pretty quickly that would not get me very far. My point is I’ve tried it both ways… and I would be lying if I didn’t admit that I still occasionally fall back into old habits. But when I mindfully attend to my own needs as much as I can – my world is a far better place to be in. In fact it’s good.
Sometimes this is as basic as making sure I take 20 minutes between work and school pick- up to have a coffee and wind down from the day. Sometimes it means doing the grocery shopping alone rather than with child (husband- home-permitting). It took a while, but I have weaved break-taking and self-care into my to- do list… in fact, I have countered the to-do list with a want-to-do list.
There is no doubt that my life works so much better when I put the mask on myself first. Thanks to my boy, I have never valued myself as much as I do today… its actually one of the best things that I can do for him.
Some strategies for Self-Care:
• Compartmentalise – a very effective CBT technique which can help with overwhelm. Try to do this literally as well as emotionally… if you have one of those bulging folders full of reports and information that we all start out with, get yourself a filing box and sort the paperwork – you can pick one up from Coles or Woollies, you know the ones with handles. Try to also compartmentalise emotionally; set yourself one or two tasks at a time rather than allowing the big to-do-list-of- everything to weigh your mind each day. Compartmentalising into sensible, daily to-do lists has many benefits.
• Take breaks… small breaks, big breaks, any breaks – as often and as regularly as you can (sometimes just doing the groceries on your own can count as a break).
• Learn to say no when your plate is already full.
• Learn to take things off your plate when you can.
• Learn to be kind to yourself.
• Accept help when it is offered (hard for some of us).
• Try to eat nourishing foods that give you energy, and drink plenty of water.
• Try to exercise or stretch when you can.
• Try to objectify your situation to gain some perspective.
• Share your emotions with someone – and if you are really struggling look for support; some people benefit from support groups, some people prefer one-on-one counselling, and some people get a lot out of meeting other parents informally at special workshops or play groups.
Studies on resilience (Allen, 2006) show that when we are faced with adversity, we cope better if we have strong relationships (family, friends church/community); the ability to learn from experience; good self-esteem; personal discipline; courage; hope; a sense of humour; a strong faith (or a constructive philosophy that gives life meaning); and of course information – many fears are borne of simply not understanding what we’re faced with.