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James Fox (pictured), experience director at Kin + Carta and father of a neurodivergent child, talks about how some companies are keen to help parents in similar situations.
My son has a benign brain tumour on his temporal lobe. He’s lived with this, or rather it was spotted, when he was 18-months-old. This led to epilepsy, along with one or more neurodivergent condition(s). We don’t yet know if he has social communication disorder, Attention Deficit Hyperactivity Disorder (ADHD) or Autism Spectrum Disorder (ASD). It doesn’t really matter to us, but this is a challenge when it comes to ensuring that his needs are met in an educational setting.
The hardest thing over the last year has been finding somewhere he is safe, happy and developing. Due to his social communication difficulties, it can be hard to find settings and professionals that can accommodate his needs. Our experience of early years systems – at least where we are – is that they seem to be set up for children with either severe or no additional needs. There doesn’t seem to be a middle ground. This means that my wife and I are on constant call. Something which obviously bleeds into our working days.
My son has epilepsy that isn’t being controlled by medication. This has been an ongoing journey for doctors, surgeons and the family alike as we seek to help him become seizure-free, or at least be in control of them. As you can imagine, thanks to these seizures, we have had a few (understatement of the century) incidents where we have had to rush to hospital or otherwise been unable to go to work.
My wife is a teacher and anyone who’s been in that profession, or knows someone who is, will know just how hard it can be to find cover at short notice. It therefore falls to me to answer the Bat-Phone when it rings. And that happens often. And I have no problem with that, and luckily nor does my employer, Kin + Carta. If I have to drop everything and take my son to hospital, I am always told “to go” and that “family comes first”.
It’s actually not my son’s medical needs that have had the biggest impact on our working lives, though. Hopefully Kin + Carta aren’t unique in the fact that they are accommodating when it comes to medical emergencies and appointments. It was the gaps in childcare that was the real issue, something that I know is a common challenge for parents during the pandemic.
Again, my employers were flexible and generous when I had to reduce my hours once formal childcare was no longer viable. I recognise this stems from constant communication between myself and the rest of the team. I have always been open about the challenges that we face on the home-front, and this honesty meant the whole team understood the severity of the situation and why I needed so much flexibility. They gave me the autonomy to come up with a solution and work out how it would suit everyone, but in particular my son.
Communication is therefore key. The more you talk about it, the more people can relate. You’d be surprised by how many people have faced similar circumstances, or know someone who has. It also means when you do have to drop everything, the team is ready to step into the breach and are not reluctant to do so. In short, it is about normalising the situation and encouraging an awareness of the multitude of challenges myself – and others – face.
If you are perhaps not as open as I am (and if you ask my wife, she’d probably say I’m too honest!), then this can seem daunting. It shouldn’t be. It’s encouraging to see that as a society, these types of conversations about domestic and familial challenges are becoming more public and the old stiff upper lip attitudes are being left in the past, where they belong.
At the same time, I do understand that some people prefer to keep their home and work lives separate. If that is the case, then be as open as you feel comfortable. Maybe speak to someone you trust at work, or slowly release a bit more information about yourself. Remember, we don’t know everything about our colleagues!
Outside of work, I would advise anyone who is in a similar situation to us to do their homework! This means ensuring that you know what you are entitled to when it comes to access to funding and support. And be pushy! Push for access to community paediatricians, speech and language therapists, occupational health – whatever is right for your own situation. The NHS is amazing but you often find yourself being passed around. So keep on top of them and chase. Basically, be really annoying!
And finally, work with clinical professionals or those in childcare settings to apply for funding such as DLA and Educational Health Care Plan. We were told our son would “grow out of” the traits associated with ASD. This was hugely frustrating, as it’s very hard to diagnose ASD in a toddler. By the time his ASD traits and stims were obviously manifesting and impacting his childcare settings, we were already behind the curve on getting him the support he needs. I cannot emphasise enough the importance of making a case for funding as soon as possible – this will reduce considerable stress.
Without an official diagnosis, it’s all too easy for people to discriminate against your child. We soon got fed up hearing that our son was ‘unmanageable’ or ‘not coping’. In fact, this was heart-breaking, because we know our son is not a ‘naughty boy’. He is a bright and loving child who just needs additional support to flourish.
One of the major pluses of lockdown has been that people having kids around is seen as normal. Clients and colleagues understand the juggling act that work and parenting has become. Obviously, some people have a slightly more difficult act than others. Most are keeping three balls in the air, at times it feels like we also have a chainsaw and a chair thrown in as well.
It is therefore important to communicate with your employers, so that they have a better understanding of the challenges that are unique to you. Take it at your own pace, be open and they should help you keep all those balls – and any other objects – from hitting the floor.