Working, as a parent of a disabled child – the supersized juggle

By Anita Kerwin-Nye, Director at YHA, Lead at Every Child Should and a campaigner on access and inclusion. She is mum of 4 and keeper of chickens

“If being a parent and juggling work is hard then parenting a child with disability and staying in the workforce is like juggling sharp knives on top of a flaming tightrope with people throwing heavy blocks at you.”

When our third child is weeping with anxiety, clinging to the banisters and begging us to not to send him to school today our hearts break. For him and his pain. For his siblings now late. For the school that he loves and is doing such a good job helping him manage his panic attacks. But also, the thought that goes through our heads is less generous but just as vital - panic as we start to rearrange our day where one or both of us will be either late or off work.

Part of my bio describes me as “Lived gig economy before it was a thing. Was a social entrepreneur before it became fashionable. Flexible worker ahead of it becoming a legal right.” The fact that people work differently – beyond the traditional contract – has been an interest of mine for years and is part of what I studied to become a Fellow of the Chartered Institute of Professional Development. I have been a full-time employee, a part-time employee, a successful business owner, a failed business owner, a freelancer and a home worker. I have balanced these to maintain a successful career and a great family – at times giving up a bit of everything to ‘have it all’.

In 30 years of working, what almost floored me, was doing this with a disabled child. A beautiful, brilliant, loved, school-refusing and anxious child. He is not my first child with difficulties, but he is my first to need one of us to drop work and ensure we are with him if he 'school-refuses'.

The impact on family income over the last 2 years has been significant, compounding existing challenges, and adding considerable stress. It has also affected both my career choice and perhaps less obvious in a society where women are considered to be the main childcarer, it has also affected my husband's career. He has had to focus on freelance consultancy work rather than returning to a more secure and higher-earning role, and within this, we have to time events to makes sure one of us could always be at home if needed.

I know I am not alone in this. A brief twitter poll had 299 votes with 81% of parents saying that having a disabled child has affected their career. The Disabled Children’s Partnership say 53% of parents have had to give up a paid job to look after their disabled child.

But some would argue this is just parenting. Is it more than just parenting generally? Yes.

Reasons why working while parenting a disabled child is like the normal work/life juggle supercharged

1. Illness is supersized. More appointments. More care at home. More days off school.
2. Specialist child-care is harder to find and expensive
3. Increasing exclusion from school means day to daycare harder
4. Pre and post-school care – children with disabilities often excluded from trips or clubs
5. Fighting perceptions that we should always be at home with our child
6. Already having to fight for so many things – too exhausted to fight for workplace rights

So, what can we do?

Well first let’s make it more visible. Let us talk about the complexities of balancing care and work. And the guilt. And the fact that it is okay to want a career and have a disabled child (I cannot tell you the number of taxi drivers who have berated me for wanting to be both successful at work and a parent of a child with disabilities – I have a bar chart now to capture to responses and now talk less in the back of cab….). And let's also acknowledge that it’s okay to want to stay at home but that we need financial support to do this.

Like so many things I write on I was warned not to write this – because future employers or clients might not think we were reliable enough to employ or contract. Well – we are very good at what we do and always deliver. If flexibility and respect for family life aren’t for you then we probably shouldn’t be working for you (and maybe nobody else should be either….) If those of us that can talk about these things it makes it easier for those who may be struggling in silence.

• Know your rights. Working Families have excellent guidance on this And great guidance for employers that want to support working parents – including a lot of resources around parents with disabled children.
• Talk to employers. Many have great flexibility and understanding. Talk through your practical needs but also how the organisation could support culturally. One organisation I worked in shut people out of meetings or conference calls if they were late because they felt it showed that you didn’t respect other people’s time. So, when you finally made it into work after dropping your sobbing child off at school your colleagues made you feel like a pariah. Building-in understanding of different circumstances creates a healthier workforce culture in the round.
• If you are considering freelancing for flexibility, you could join local freelance networks and support groups. You will find a network of parents in similar positions and a pool of support for freelancing working (which while exciting and flexible can also on occasion be isolating and scary.)
• If you are returning to work after time out for care, you could look at programmes like Leaders Plus or return to work initiatives that support you during your first year back.

For the main part though, know you are not alone. For us just knowing that others understand has been such a support. We are moving through as we have now found childcare that son trusts and, with support of the school, school-refusing is moving on and Matt is back to taking on work. But we know that this is a challenge for the years ahead so building flexibility will always be part of our working patterns and choosing employers who understand family life matters will always be essential.

And in truth – who would ever want to work for a client or employer who doesn’t.

Anita Kerwin-Nye is Director at YHA, Lead at Every Child Should and a campaigner on access and inclusion. She is mum of 4, keeper of chickens and can be found on twitter at @anitakntweets being pushy and provocative in equal measure.