How can you rest when your child can’t?
It can be relentless caring for children with neurodivergent conditions like FASD. It’s vital that caregivers put their oxygen masks on first through finding ways to rest. In whatever way that looks like for them.
Becky Govan, Social Worker, FASD Trainer, Lecturer, Doctoral Researcher and mum to a child with FASD talks about what (much needed) rest means to her.
And below, watch Neurowise Founder and Associate Anna and Bec chat about how they find ways to rest. Even when their children can't.
Rest? What’s That?
Self-care is a problematic concept in adoption. I know as I have been told more times than I care to remember that having a bath will miraculously save my sanity, fulfil my children’s needs and restore equilibrium in our home. Much as I love a bath this has never turned out to be the case. Whatever self-care has been suggested for you - a bath, aromatherapy, having a manicure, going for a walk, taking a deep breath or even 10 minutes of mindfulness, you may also have the rage and disappointment I have experienced when being told this is what you need for the hundredth time. Often this frustration comes from a place of feeling misunderstood by professionals or supporters in our lives. Thinking to ourselves; my child has complex needs, our home is in disarray, things are really tough and there are days when going for a wee is difficult to fit in. How on earth am I supposed to implement the self-care that you’re talking about?
I’m wondering if we need to rethink the concept of self-care and go back to a perhaps an older concept of rest. I can completely understand that a lot of people will now be thinking I am delusional and do not get it. When your child is neurodivergent or has a neurodisability such as FASD it is highly likely you may not get sleep, spend your days on life admin involving their needs, feel under chronic stress and still have to work on top of that. When we talk about rest the resistance we feel is very often based on our living experience as parent caregivers to children with needs that have been negated and unmet by a support system that has failed us for so long.
But it’s vital for our own wellbeing and that of our families to put our own oxygen masks on first. I wonder if we could use some of the effective advocacy skills that we use for our kids and turn them inwards on our own needs for rest. It is not reasonable to expect a family, partnership or individual to cope with managing the needs of one, let alone several children with complex needs without a break. Rest is essential to the sustainability and stability of our lives. Getting rest and having that supported and respected is something that needs to be embedded in the professional response to supporting our families. Like so many things, it should be a given, but it is not.
There needs to be an investment by the state in the longevity of informal care which let’s face it, is a cost saving exercise in the long run. It also saves our sanity and relationships and gives us a bat in hells chance of coping with the onslaught of everyday life. Despite what the predominant attachment narrative embeds in us, to be able to have restful time away from your child and be a better parent when you return is essential.
I appreciate that rest will look different for everyone depending on your unique family set up, but this is what we do. We have a direct payment for my daughter to have carers in order for us to have respite. This is like the gold at the end of the rainbow some days and we plan it weeks in advance. We have worked hard to employ caregivers that understand our daughter’s needs so that we can spend time with our other children who frankly get too little of our focused time and attention.
This lifts that burden so I can feel like a “normal mum” again. And so that my husband and I can have time together to maintain a healthy relationship. It feels like some peace from the sensory overwhelm that is home and a lifting of the constant pressure. Without this I feel like I can entirely lose myself in the kids needs and all sense of perspective goes. Our direct payment comes from social care, and we worked for two years to be able to get this provision agreed. I know a lot of parents out there might struggle with getting anything from social care. It’s disappointing as a social worker to recognise that. However, here’s some tips on how to get your rest and make sure it works for you:
1) Things are different for our families so rest might look different. Decide on what rest means for you and your family at this point in your life to lift the burden of expectations. For example, is it 10 minutes shut in the loo reading a book or 5 minutes scrolling your phone whilst sat holding their hand as they won’t go to sleep without you? Listening to an audiobook in the car or facetiming a friend?
2) Consider honestly to yourself whether there is genuinely no way in the world that you can take 5 mins doing any of the above or similar or whether you may be resisting rest to some extent. Yes, you are incredibly busy. Yes, you have a child where you are constantly advocating and supporting them well beyond their chronological years. But and here is the challenging part, are we avoiding difficult feelings by keeping constantly busy? I don’t blame you. Totally understandable and do it myself but it’s worth recognising and asking if that is really working for you or is it just making it all feel a lot worse.
3) Think about who can help make rest happen. As caregivers we experience our support networks becoming smaller as the years go on and need to think about what new support networks we can build. Who could be helpful now and how? Yes, it may sound mercenary, but this is about survival.
4) Where can the money come from to facilitate this rest if we need to pay for someone to care for the kid(s). Many of us haven’t got any additional income because we’ve had to take lower paying jobs or leave work entirely. So, does your local authority provide any assistance as an outcome of a parent carer assessment? Would they be able to facilitate any respite? If not via direct payments perhaps as a disabled child’s respite short breaks plan.
Apply for short-term care for your child - GOV.UK
Managing your stress when caring for your disabled child | Disability charity Scope UK
Parenting tips - National FASD