Kay Szawlis, trade mark paralegal at Springbird IP, has written a fantastic review of IP Ability’s recent webinar in which Helen Burness talked about combining her work in the legal world with her role of carer for her eleven-year-old daughter, who has complex needs. Kay told us that she lives with her three children, her partner and a generalised anxiety disorder. One of her children is neurodivergent and another has a chronic health condition. Kay’s favourite self-regulation mechanisms include lifting weights and knitting.
Kay writes:
I recently listened to a webinar by Helen Burness about combining her professional life with her role as a SEND (Special Educational Needs and Disability) parent. It resonated with me deeply, particularly when I thought back to my 2016 self — just beginning my SEND parenting journey, even though I didn’t yet have the language for it (which, in hindsight, feels very typical).
Helen began by giving us her background – as a professional and as a parent. Many of the points she raised felt painfully familiar to me — and I’m sure to many other SEND parents — particularly the search for someone willing to work with you (or employ you), and the overwhelming sense that your life must be completely rebuilt around your child’s needs and appointments.
Challenges for SEND parents – and their strengths
Part of the difficulty lies in how relentlessly non-stop life can be when you’re parenting a SEND child. It can be incredibly hard to find people who truly understand that relentlessness — the constant mental load, the emotional labour, the planning, the advocacy. And alongside that, there’s another tension many of us recognise: the assumption that because we care for a SEND child, our minds must never fully be at work. That we can’t be as capable, as focused, or as brilliant professionally because our attention is divided. It almost feels as if the moment you let anyone know you are a SEND parent, they immediately put you in a pre-defined box with a label that says ‘SHE* WILL NEVER GIVE HER ALL AT WORK, HER MIND WILL ALWAYS BE ELSEWHERE’ – this box is somewhat similar to the one in which young mothers are put, except the label is bigger, brighter, it flashes and has a loud siren.
[*I say ‘She’ because the majority of SEND parents who have to compromise at work / juggle it all are women.]
Whichever way you turn, it can feel like there’s a gap between where SEND parents actually are, and where employers assume we are.
And yet, we are still here. Still skilled. Still committed. Still ambitious. Often more resilient, resourceful, and empathetic than ever — not despite our caring roles, but shaped by them. And a lot of the time, work is what provides the ever elusive balance in life for SEND parents.
There’s no manual
Most of us were not trained in any part for our caring responsibility. Most of the time, we are handed our child, at some point we may also get a diagnosis, sometimes there is even a leaflet or a support group. But there is no university course. No manual, no handbook, no textbook. So our job might be the only place where we actually feel like we know what we are doing, and where we feel confident, competent and in control. It might even be the one place we get to keep our own name! (You would be surprised, how often we are referred to as ‘mum’ and ‘dad’ by healthcare professionals, rather than by our first names…).
At the same time, work might be the only place where we have structure, stability and predictability. If we are being honest, caring for a SEND child can be a repetitive, structured and (dare I say it?) boring job (the admin and form-filling never ends). It’s also filled with messages like: “Please attend this 13:35 appointment today,” “Can you make next Wednesday at 10:45 at a hospital 75 miles from your home?” and “Please collect your child from school immediately — they’re having a meltdown and we’re unable to support them” (again).
So if you’re going to ask whether we can attend a week-long work trip abroad, it needs to be genuinely business-critical. Because we know we have to lay down so many support systems in place before we go, it has to be worth the effort it will take us to be there.
Tips for employers
So how can the employers help?
- Create safe spaces where people can talk
- Get to know your employees, and get to understand the demands on their time outside of work
- Don’t make assumptions
- See beyond policies and just be human (yes, it’s that simple!)
- Give people what they need (if you can), even if it creates precedent (maybe reflect on your policies?)
- Be considerate about the times that are especially difficult for SEND families – for example summer holidays in households where appropriate childcare for the SEND child might simply not be available
- Be mindful of the emotional load carers are already carrying — consider whether you truly need a detailed account of their personal lives to provide an accommodation, or whether it’s enough to know what support is needed, without repeatedly asking for the why.
- Ensure that the responsibility for understanding and implementing the law does not fall on the carers you employ. Know the law, apply it consistently, and proactively inform all employees of their rights — without requiring them to do the emotional and administrative legwork themselves. (Make all new employees aware of this, regardless of their carer status (because not everyone will share it with you, especially on day one))
None of this requires extraordinary policies or perfect systems. It requires curiosity, empathy, and a willingness to see people in full — not just as employees, and not just as carers. When SEND parents are supported to thrive at work, everyone benefits: teams, organisations, and the families who rely on them. And given how difficult talent retention is, creating an environment where people feel safe, secure and comfortable might be the best business decision you make – not just a ‘nice thing to do’.
Does this resonate with you?
And for those who are earlier on this path — perhaps still finding your footing, still deciding how much of your story to share — know that it won’t always feel this isolating. You may not feel ready to be very public with your story (and it’s certainly not compulsory!), but there is also power in owning your narrative.
Your confidence will grow, your voice will strengthen, you will find spaces where your professional identity and your caring role can coexist and you will find your ‘tribe’, your support network and your empathetic shoulder to lean on. You are not asking for too much. You are asking to be seen as the capable, committed professional you already are.
NOTE: This write-up does not reflect or encompass all SEND journeys. If you disagree or don’t recognise it as your own – it’s ok. Your journey is just as valid, important and true. This piece does not mean to take away from anyone’s journey.
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