My wife Jo and I are a good team with our family – we have two boys, Jacob (aged four) and Jonas, one. Other dads might say the same thing, but I’m partially sighted – which means we face additional challenges when it comes to parenting.
Jo does all the driving and DIY, most of the housework, and runs the in-house, 24/7 laundry service that started when the boys came along. She’s amazing. She takes care of the things I can’t do and never makes me feel bad about it.
I have oculo cutaneous albinism, which means among other things that I can’t drive, struggle to read print, and don’t recognise faces or any sort of detail from a distance. I also have difficulty coping with bright light and glare. It certainly adds some challenges to being a dad.
I grew up in a very working-class background in Middlesbrough and my parents didn’t expect to have a visually impaired child. At first they just thought I was having trouble focusing, but eventually my albinism was diagnosed and I had eye surgery at the ages of six and ten.
No-one really talked about it as a disability – that was good in some ways but made me resistant to any support. Back in the 1970s and ’80s there seemed to be only one style of brown NHS glasses for children, but even when eyewear got a bit trendier in the 1980s I simply refused to wear them.
in my teens I was the kid who couldn’t see properly but was always up for a fight.
I’d been a fairly bright little boy in primary school and loved reading, but because I had to hold books close to my face I became a target for some of the other kids. I was quick to hit back with comments about how they couldn’t read at all, but that just started a confrontational approach which got worse in my teens – the kid who couldn’t see properly but was always up for a fight.
At secondary school I had to compete against more middle class, nuclear family types than at primary school, and with only my fairly uneducated Mam and Nana at home to help me out I felt inferior. I became disruptive and fell behind. The school knew there was something wrong with my eyesight but didn’t really know what to do about it, so in 1985 my mother decided to have me registered as partially sighted. It wasn’t an instant solution, but it meant I got more support and it heralded a more positive approach.
I fluked enough good GCSE grades to move onto A-levels, encouraged by three amazing teachers who made me realise I could achieve more than I thought I could. I started wearing my glasses indoors. When I went on to St David’s University College in Lampeter I began to wear them all the time. In 2000 I became a rehabilitation officer and worked at the Royal National College for the Blind in Hereford – which was where I met Jo.
Finding ways to control and adapt as much of my world as possible is critical to pretty much everything, but that’s not easy when it comes to babies. Since Jacob was born in 2013, though, I’ve become fairly comfortable with bathing, changing nappies, bottle feeding and dressing little ones.
But I’ve said some pretty unpleasant things to press studs over the years, and some things are just impossible – like a particularly messy nappy when the contents get everywhere. I’ll think I’ve done fine until Jo gently tells me, “Oh, there’s a bit there…and there…and there…” I promise, this is down to not being see properly rather than poor technique!
Playing with the boys at home is easy enough because I’m in a familiar environment that I can more or less control. I’ve been tripped up by the odd rogue toy car, but that’s all.
Crowded, bustling environments are my worst nightmare
Outdoors, being in sole charge of the boys – well, that’s different and much scarier. Crowded, bustling environments are my worst nightmare, particularly in summer and early autumn when the sun is low in the sky. Every parent has had that moment of sheer terror when their small child slips free and disappears.
For me it’s worse because I know I’ll struggle more than most people to find them again. My visual impairment also isn’t that obvious – I just look like a bloke wearing glasses – so I’m always having to explain why I need help.
I once lost sight of Jacob at a small animal farm in a kind of maze for toddlers made out of hay bales. I thought I knew where all the exits were but he’d found one I hadn’t spotted; he was rescued by a kind stranger who found him 200m away, talking to a small goat.
I’m much more comfortable in the countryside than the city. We have quiet and familiar walks on our doorstep and I love taking the boys out to walk in the woods or sit under a big, old tree and tell stories. I can keep my gaze on one small figure out there much more easily than against a busy moving background with lots of people.
If the sun’s in the wrong part of the sky, my son could be on stilts wearing fluorescent green and I’d still have no chance of spotting him
Jacob would love to go to Alton Towers and Disneyland Paris but I couldn’t be responsible for him there. If the sun’s in the wrong part of the sky he could be on stilts wearing fluorescent green and I’d still have no chance of spotting him. I’m sure we’ll go to places like this eventually, but Jo will have to be in charge.
The most frustrating thing is not being able to drive. Over the years I’d come to accept it was simply something I couldn’t do and rationalised that I’d be naturally fitter through having to walk more. But on those days when Jo is poorly, tired, busy with her own job or needs space, I’d love to be able to strap the boys in the car and head off somewhere.
In my worst moments, I feel guilty and a bit useless but mostly we’re like any other family trying to get the balance right. I love being a hands-on parent as well as being able to work. The days of thinking “Why me?” are pretty much gone and it’s only occasionally that I remember that I’m a visually impaired parent.
Via Joan MacFadden
Also read:
- My Child Has Down Syndrome – And She’s The Best Thing To Happen To Me
- Why My Divorce Was Good For My Children
