Parenting with a visual impairment: 'It's all about building a connection, enabling them to grow and experiment'
Robin is visually impaired and dad to two sons, Tadhg, 5 and Arlo, 2 who are sighted.
There’s no reason why you can’t have a positive, amazing and engaging experience as a parent with a visual impairment. You just have to be aware of the practicalities and the areas where you’ll need extra support and workarounds.
I was born with albinism and in terms of vision this means I can see about 10% of what someone who’s fully-sighted can. So I can see the top letter on an optician’s eye test chart but nothing else. My field of vision is regular but the sharpness of what I see is massively reduced.
Because I’ve grown up with albinism, I don’t have any sense of loss about my vision. What I can see is entirely normal to me and I’ve learned skills and strategies that probably make me appear more ‘sighted’ than I actually am.
I was apprehensive about having children but aren’t all parents-to-be? How would I cope in an environment with a small child racing around? How would I be able to track where they are? And make sure they’re safe?
There was definitely a period when I stalled making a decision. But with the benefit of hindsight, no one should do that – and definitely not on account of their vision. People should do it when they’re ready.
My wife Emma is blind and our biggest worry was whether we’d pass on our eye conditions to our children. We had genetic counselling at Moorfields Eye Hospital in London where the doctors reassured us that the likelihood was small.
We reached a point where knew we were doing it for the right reasons and that if our child did have a visual impairment – and it was unlikely they would – they’d be in a good place. They would have parents who could support them and enable them to have a positive path through life.
Building our confidence
Before Tadhg was born, we went through lots of stages of self-doubt. What I’ve learned is that all parents have these worries, whether or not they have a visual impairment.
Tadhg’s birth was slightly traumatic, a long labour. On top of this we worried that as visually impaired parents we might be under the healthcare team’s microscope a little too much. And of course, we weren’t. They were just always aiming to be helpful. When we took him home, like any parents, some days we thought we were doing well and other days we didn’t. It’s all part of a magical journey. A constant learning process. I remember his first nappy change really well. Like anyone, I thought: ‘Oh my god, how do you do this?’ but it got easier and easier over time. Day-to-day, we found workaround solutions. For example, instead of pushing a pram, Emma mostly carried him on her front in a sling.
In comparison, Arlo’s birth was a much more relaxed experience and we were more laid back. We felt more confident and our energies were channelled to regular baby things like what name to choose, rather than worrying about any challenges. We’d done it before and we knew we could easily do it again.
Communicating and bonding
What you realise quite quickly about being a parent is that you need to build up a good relationship and rapport with your kids. I imagine it’s like this whatever your level of vision. They will want to try things that frankly put your heart in your mouth but it’s all part of enabling them to grow and develop. Tadhg currently loves climbing trees and he’s mad on frogs – hunting for tiny creatures who move fast is an interesting thing to do as a low vision dad, I can tell you.
We want to be really open and honest with the boys. Tadhg has already started asking questions about our sight and we’ve explained in a way that’s easy for him. He knows mummy’s eyes don’t work and daddy’s eyes don’t work properly. And he understands the everyday things that make life easier for me, like holding things close and wearing a cap and sunglasses if it’s bright. He also gets that if he points and asks about something, he’ll have to point lots of times. We’re great at improvising and finding routes around barriers. So, if we’re swimming for example, the kids use rubber rings or armbands that are a different colour so I can see them more easily. If we go out and Tadhg is on his bike, I take a note of what he’s wearing so I can spot him across the park.
Gadgets and tech are really helpful too. I remember being on the way to nursery with Tadhg, when he stopped to point at what looked like a tiny red dot to me. When I used the magnification function on my phone, I discovered it was actually a ladybird. To me, this is the very essence of parenthood: being able to share, discover, learn and understand things in different ways.
You can be as good a parent as anyone else with your visual impairment or disability and you can enjoy it like anyone else. Yes, you might need to think practically about the adjustments you’ll need to make, but there’s support out there.
Build a support network
Luckily, we have brilliant family and friends around us who can help out when we need it. I also really recommend talking to and meeting other families who are blind or partially sighted that are further on in the parenting journey. You come away from those meetings thinking ‘We can do this!’. My wife and I have started making podcasts called One Blind Mum about parenting because we want other blind and other partially sighted people to feel supported and make an informed choice about having children.
Be open with your kids
Be honest with your children about your disability from as early as possible. We’ve also made sure that our boys have friends who have disabilities – so they’re growing up knowing that this is nothing unusual. Just because someone has a mobility problem or can’t see, that’s just part of who they are.