I’ve been quiet around these parts as I’m developing training for teachers and professionals, to help them improve relationships with parents. As I’ve been working on course material and delivering presentations, it’s hit me just how much emotional labour we use dealing with a diagnosis and fighting for our kids’ needs.
This goes beyond the physical demands placed on us, such as the challenges we face undertaking therapies, attending appointments, liaising with schools, managing the needs of our families and chasing up the information we need to support our kids. These demands alone are enough to exhaust us, let alone the extra emotional burden we carry.
You probably don’t even recognise the emotional labour you expend each day. I know I didn’t for a very long time.
What is Emotional Labour?
Emotional labour can mean a few different things.
First used in the context of work, emotional labour originally referred to the process of managing feelings and expressions to fulfill the emotional requirements of a job. It explains the pressure we put on ourselves to regulate our emotions in order to suppress strong emotions in the workplace.
In recent years, the term has been used to explore the extra roles and tasks that many women take on, unpaid and largely unacknowledged. The job of keeping on top of housework, managing groceries and shopping, coordinating family calendars, all the general organising of life that tends to fall on the shoulders of women.
Emotional labour is also used widely by marginalised groups, to describe the ongoing burden of having to continually explain needs and requirements. In the disability community, emotional labour is expended in explaining symptoms to others, requesting reasonable adjustments and dealing with every day ableism.
So what do these explanations have to do with special needs parenting?
We expend emotional labour every single day, using energy to navigate a world that is not made for our kids or for their needs. However, the emotional labour we use goes beyond managing our own emotions, undertaking countless extra tasks or forever explaining our kids’ needs to others.
The emotional labour of special needs parenting encompasses all that and more.
The Emotional Burden Parents Carry
From the moment we suspect our child is struggling, we take on a huge emotional burden. As we live in a world that views disability, disorder and diagnosis as deficits, the moment a diagnosis is suspected, we’re fighting our own fears, as well of those of everyone else around us. We’re also fighting the expectations and assumptions that we all hold about disability, which tend to concentrate on what isn’t possible, rather than on what is.
To obtain a diagnosis, we have to ride an emotional rollercoaster that takes us from acknowledging something might be amiss, through to making the decision to act on our suspicions and then following through on this decision. It’s not an easy road and it’s full of highs and lows as we move between a variety of emotions along the way.
During this ride, we need to manage our fears and emotions so we don’t fall in a heap. Again, this a tough ask as we move from appointment to appointment, complete endless paperwork, chase up countless reports, juggle the costs of testing and assessment and repeat our story over and over again.
At the same time, we face an uphill climb to access the supports our kids need. We’re ushered into a new confusing world, where we’re suddenly asked to make informed decisions on issues we don’t fully understand. We have to decide on specialists, treatments and therapies, navigate waiting lists and deal with the bureaucratic nightmare of applying for funding and support.
Meanwhile, we struggle to get the support we need from those around us. Family and friends can’t fully understand our challenges – how can they, unless they live it themselves? Some of them won’t understand why we’re seeking a diagnosis at all while others will start drifting away as our obligations mount and our availability decreases.
Along the way, we’re dealing with uncertainty and negativity. We have to make decisions without the knowledge or confidence to make them. We have to live with an uncertain future, never knowing what lies ahead. We have to continually prove our child’s needs, revisit their challenges and constantly regurgitate our story, just to give them a chance of accessing the support they need.
And, then there’s the guilt. The guilt we feel for not acting sooner, not doing enough, trying to do too much, not being there for friends and family, being absent from work, not having enough time for our other kids, not having enough time with our partner…
The Impact of Emotional Labour
It’s no surprise that parents often grieve a diagnosis or fear the future, as that’s almost the inevitable consequence of this journey. It’s hard to see the positives or work past our overwhelm when society sees disability in a negative light. It’s even harder, when we’re always having to prove our kids’ needs to access help and support.
Navigating this sea of negativity and having to constantly revisit what our kids can’t do, places an emotional toll that is hard to bear. The impact of this emotional labour on special needs parents can be profound, affecting our physical, emotional and mental wellbeing.
Constantly being on high alert, continually fighting for our kids needs, living in a world of judgment (of our kids and our parenting), battling the assumptions of what our kids can do and having to hold our emotions and feelings in check will inevitably take a toll on anyone.
So, what can we do to limit the toll of emotional labour?
Strategies for Managing the Effects of Emotional Labour
Understand and recognise emotional labour
Like me, you may not even know you’ve been living with this burden for so long. It’s hard to see past all the individual challenges of our lives – it’s no wonder many of us have no idea we’re expending emotional labour at all. So, take the time to think about your everyday life and list the areas in which you use the most energy. Writing it down will help you acknowledge this burden and understand the toll it’s been taking on you.
Start letting go of the guilt you are holding
I know I feel guilty for not doing enough, trying to do too much, not being a better wife, not spending enough time with my other kids, being an absent friend, etc. A lot of our guilt is driven by our own internal expectations, which are often unrealistic. We are all doing the best we can but holding onto unnecessary guilt is just making our lives a lot harder than they need to be. Be kind to you, make a list of the guilt you feel and try to let it go – it will help reduce the emotional burden you are carrying.
Challenge your mindset
Many of our own assumptions of diagnosis and disability are rooted in the beliefs of society as a whole – that disability is bad and something to be feared. This internal belief can make life so much harder for us, adding an extra layer of negativity into our lives. Look at things differently. Challenge yourself to recognise the strengths, potential and opportunities of your child and their diagnosis. List at least one good thing each day to counter the burden of negativity and challenge your own mindset.
Focus on what you can control
Most of the time, it feels like we’re being swept away by currents beyond our control. We can’t control how others see us or our child and we can’t control how much support our child receives. However, there are things we can control and it helps our mindset to focus on these. We can control how we speak about our kids and about their diagnosis. We can control how we respond to others. We have control over our input into applications and meetings. We can control how we live our lives.
Parenting a special needs child is hard. There’s no question about that. However, there are strategies we can use to help reduce the emotional labour we carry and learn to find the positives in our lives.
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Are you aware of the emotional labour you use as a special needs parent?