Claire Hailwood suggests that juggling work and home is just the start when you have children with additional needs


I missed the deadline for completing this article. Why am I telling you this I hear you ask?

Because the reason that I was delayed is intrinsically linked to the subject of what I’m writing about. Last week Dawn Savidge wrote in response to an article highlighting the challenge that many parents face as they attempt to balance work and raising their children. (You can read that article here. )This has significantly increased post pandemic as many more people are working from home with their children there too. What was a response to a global crisis has become a norm for many parents who, according to this survey, are feeling increasingly depressed, stressed and financially challenged.

The pressures of modern life can feel overwhelming – the need (and desire) to work, wanting to ensure children have great opportunities to make memories, the rising cost of living including childcare, the demands of ‘normal’ weeks filled with requests from school, clubs, meeting up with friends not to mention boring but vital life admin like shopping, cooking, cleaning…

I’ve been so grateful to have jobs that have allowed me to be flexible – I’ve been able to work from home as well as travel to be with people / in shared office spaces. Being at home means I’ve been able to put a load of washing on at a coffee break and hang it up at lunchtime, I’ve been able to flex in order to take PE kits (or the countless other things my children forget!) in to school. As Dawn pointed out in her article, working from home has the potential to increase productivity and I can testify that that has been true for me so this is by no means a call to end working from home.

But there is an increasing cohort of parents and carers in the UK who, alongside the ‘normal’ juggle of work and raising family, face additional pressures as they also need to advocate for adequate school provision for their children.

Whilst it’s not a term that I like, the numbers of those ‘refusing’ school has been on the increase since 2015. A large proportion of those ‘refusing’ are children with additional, often complex, unmet needs unable to cope in a ‘mainstream’ classroom environment. Their ‘refusal’ is not obstinance but a cry for help.

Some children may attend part time while better support is put in place or trialed. Some will attend part time while an alternative setting is sought. Some may not attend at all.

What if parents are working full time? How do you manage a child who’s at home more of the time particularly one with additional needs in a time of crisis? The option to stop or reduce working hours may seem appealing or practical but most families in the UK won’t have the financial means to make this a viable option.

In addition to this many of these parents and carers will also be seeking additional support for their child or children and none of these systems are fast moving, many are complex and often overwhelming. As someone who works in the sector, has the privilege of a decent education, is reasonably intelligent and has access to a good network of people with helpful skills and knowledge, I have found the EHCP process in school confusing, lengthy and frustrating.

Which brings me back to where I started and the reason why this article is a little later than anticipated(!)

Clocking up the hours

For parents of children with additional needs, or health concerns, we have to add scheduling and attending therapeutic interventions, assessments and medical appointments and so much paperwork…. In the networks that I’m connected to, it is not uncommon for parents and carers to report clocking up an additional 35 hours of extra, unpaid work, sometimes weekly in appointments, form filling, meetings, research, phonecalls etc – this is literally another full time job.

It’s not surprising then that amongst this group of parents and carers, and those who may have additional caring responsibilities for older family members who experience the same (perhaps for some in the so-called sandwich generation, caring responsibilities both ways!), the rates of burn out are increasing.

Perhaps this is a world you’re familiar with? Perhaps it’s a world you know little about? Perhaps there are people you know who might be juggling even more than ‘just’ the normal mix of work and family life – in your church or community.

Isaiah 1 calls us to ‘learn to do good; seek justice, correct oppression, bring justice to the fatherless and plead the widow’s cause’. Psalm 89 tells us us that righteousness and justice are the foundation of His throne while Micah 6 calls us to ‘do justice’. At the core of who God is and what we’re called to, is a pursuit of justice. I think that this group of children and young people are amongst those who we should pursue justice on behalf of.

In Corinthians there’s a picture of the church community as the body of Christ – when one part suffers we all suffer, when one part rejoices, we all do – it’s a picture of radical, passionate, counter cultural care giving. I get excited when I think about the church in this respect – what if we were known as people who cared that deeply for one another as an outworking of our love for God? What if this demonstration of care was the very thing that caused people who don’t yet know God to begin to wonder about him because of the example His people, the church, were living.

Do you know families who might be trying to juggle all of this? Might you be able to support them in some way? Perhaps you’ve got specific skills and knowledge that you could lend that might be helpful? For most of us, the kind of support you might be able to give is personal and practical so they know they’ve got people alongside them and that could make all the difference.