When You Feel Helpless as the Parent of a Kid With a Disability

We all need a sense of mastery or control in our lives; this is key for emotional well-being. It is particularly important in the life of a parent who’s a caregiver. We are subject to more ‘experts,’ appointments and advice than most other parents and this can be de-skilling and disempowering. Our parenting suddenly becomes public, observed and judged. It can sometimes feel like we do not know what is best for our child, or that others are in a better position to know what they need. Not a nice feeling.

We also come up against more brick walls than other parents as part of the system with which we have to deal — whether it’s education, health or social care. Emails unanswered, EHCPs delayed or not actioned, trying, and failing, to get hold of someone in the NHS or local authority. The frustration can bring you to tears of helplessness. It can feel like you’re engaging in battle with a great big faceless behemoth.

‘Learned helplessness’

Ever since the psychologist, Martin Seligman, undertook unpleasant experiments using electric shocks on dogs the term ‘learned helplessness’ has referred to that feeling when, despite your best efforts, nothing you do changes the situation. By the end of his experiment, the dogs just lay down and submitted themselves to the shocks. They had learned there was nothing they could do to escape them, they just had to roll over and accept it.

The studies led to a recognition that helplessness can lead to depression and feeling like future efforts to change things are unlikely to work. It is no wonder if sometimes we as caregivers feel like giving up…or we fight.

Activism

One outcome for parents is becoming a warrior or activist. Recent statistics released by the Disabled Children’s Partnership show that only 4 percent of parent caregivers feel they receive the right support to care for their child with a disability safely. If this is the only way to get what your child needs, no wonder parents feel like they have to go into combative mode.

This can mean fighting the system, resisting the system or refusing to engage in the system. Where usual routes of complaints or collaboration for improving the situation fail, it may be that taking to social media is the only way to have an impact.

While this approach is vital for improving services — and powerful — it is also draining and all-consuming. I wonder about the cost, on a personal level, to this. The importance of finding balance and other things to nurture you in life are so important.

Acceptance

Acceptance is often portrayed as the opposite of denial and maybe this is particularly important in circumstances when the cause of the stress cannot easily be changed. It is sometimes interpreted as defeat, but it doesn’t always mean passive acceptance – it can be an active and functional coping response, given the circumstance. What’s the point of continually banging your head against a brick wall about something that won’t change? It may be better to divert your attention and energy onto something else or being more creative about a different way around the wall.

Regaining control

There may be times when we cannot fight the system and patience is the only response we can have. (I’m not a patient person, but having a child with a disability has taught me patience, tolerance and so much more). In this instance, some people report little things that help: tidying up, doing the washing, having clean sheets and a duvet, or my personal favorite, organizing the tins in the kitchen cupboard. Small, yes, but significant because it gives that sense of control and achievement that maybe are lacking in other areas.

I also find it helpful to write, whether it’s journaling, blogging or scribbles in my notebook. Recent studies suggest that handwritten journaling is often the best method, we process as we write and our whole body is engaged.

Sometimes consciously thinking about the positives can change our frame of mind, recognizing the victories, the things we’re grateful for and proud of. I find some annual appointments with my son useful for this as I’m reminded how far we have all come.

Loneliness as caregivers is also a challenge, and I’ve found the little things can often help: coffee with a friend, a cathartic splurge on a supportive social media group (if you know the response will be supportive), or a chat on the phone.

Growth through adversity is relevant to parents of kids with disabilities. Parents report becoming a better person, recognizing how much they’ve learned along the way and the strength they’ve gained.

Different strategies work for different people. It’s important to find what grabs your interest and passion.

The key factors for emotional well-being (for me) are: enjoyment, engagement and meaning. These things can help you get into the flow of the activity, like coloring, baking, or gardening. They can take your mind off things and give your brain a chance to re-set after stress.

In it for the long haul

I’m sure we all know these strategies, but putting them into place is hard at times and keeping them going over a long period of time can be challenging. We need reminding to think of ourselves and our own emotional needs.

And you never know what is around the corner.

Having recently stepped back a bit from micro-managing my son’s life, as I felt like everything was going swimmingly and I could afford to relax and leave them to it, things suddenly unraveled again. Support wasn’t in place that I had previously believed was. Phone calls ensued, I become the liaison between different groups again and my brain had to hold so much information and conversations that there was little space for anything else.

I started to wonder if this meant I could never relax again – do I always need to be on guard, hyper-vigilant, ready for the next fight? I realized it’s better to think of it as rallying to do battle when called for, but in between needing to take a breath, re-group, reconnect with who I am and my own interests.

I wanted to be able to prioritize when to focus all my attention on a problem to get the outcome we need. So this meant learning when to fight and when to step back. I recognize this as something that has grown out of being a parent caregiver and it’s something I’m sure most other parents can relate to. We are an amazingly skilled cohort of individuals who have so much expertise and resilience. Recognizing that is one way to counter the helplessness.

Studies suggest that approach and avoidance coping strategies (i.e. doing battle, then retreating to re-energize) can be synergistic. We need the avoidance to re-charge to then approach the problem again. Life needs the balance of both.

There’s a time to fight for change and time for acceptance.

Learned optimism and emotional well-being

Interestingly, Seligman, who had coined the phrase ‘learned helplessness’ went onto discuss ‘learned optimism’ and played a key part in the development of ‘positive psychology.’ We can learn resilience, strength and optimism by acknowledging the positives in life and building up our personal resources. For example, undertaking small acts of kindness, acknowledging things you’re grateful for each day, and finding long-term meaning in life rather than seeking out the short-term happiness and pleasure.

It’s important to recognize that unpredictability and uncontrollability are challenges to our own psychological wellbeing. In order to feel like the ‘architects of our own destiny,’ being engaged and feeling purposeful and valued are key. Our fight for a better life for our children often offers us this purpose. But there are times when the battles for our child are all-consuming, overwhelming and seemingly unsurmountable.

At these times, we need to find a sense of control and autonomy in other aspects of our life, however small, in order to keep helplessness at bay.

Seligman, M. (2003) Authentic Happiness: Using the New
Positive Psychology to Realize your Potential for Lasting Fulfillment,
Nicolas Brealey: London