To parents and families of vision impaired children

Since I often give advice (or try to at least) to fellow vision impaired people – you can read the message I wrote for young disabled people here – I thought it was only right for me to offer some words of comfort and encouragement to the families of those people as well in the hope that what I have to say can help in some way.

A quick shout out to my parents for helping me with some of the points; some things they’ve learned over the years that they could have benefited from knowing when I was a little younger in order to take some of their apprehension away. 

A message to parents and families of vision impaired children

TALK TO OTHERS IN A SIMILAR SITUATION

Now, you might think that this is an obvious one but my family and I have to hold our hands up here because it’s something we avoided doing for such a long time. 

But whether it’s chatting to other parents who have vision impaired or disabled children or hearing first hand experiences by people like me who are living with sight loss, I know it can be scary but talking to others who are in a similar situation can make all the difference. 

When I tell parents or family members about what I do, some of the things I’ve achieved and share some of my experiences, both good and bad, I can sense a little of their apprehension slip, almost as if it’s a relief knowing that others are experiencing similar things to them or their child. 

And it is, a relief. Sight loss can be a very lonely journey even if you do have your family and friends around you but once you realise that there are others out there who can relate to you and you’re child’s experiences and how you might be feeling, you realise that you’re not alone anymore and that can be a big step forward. 

IT’S A LEARNING CURVE

Sometimes you might not know the answers to people’s questions, you might not know what is the best thing to do in a certain situation but that’s ok, nobody expects you to know these things straight away.

We’re all constantly learning, even those of us who have lived with sight loss for the most part of our lives.

You’ll look back one day and appreciate all the things you’ve learned along the way and the things you’re still learning, however big or small the lesson is, it’s valuable. Every lesson plays a part in the journey and each one can help in terms of guiding you forward to the next one.

IT’S IMPORTANT TO ASK QUESTIONS

Sometimes it’s the unknown that’s the most terrifying thing. I know this was the case for my parents when I was first diagnosed since they had no knowledge of my condition. 

There was no history of it in my family and the information they came across online wasn’t exactly comforting at that time. I’d like to think that has changed now with the rise of blogs and stories from the perspective of people living with sight loss that a simple google search can lead you to. 

But sometimes you still might be unsure, possibly wary of what’s to come and that’s only natural. 

My family and I have learned that it’s asking questions that can take a little of the uncertainty away. You’re likely to be bombarded with information about your child’s disability and it can be overwhelming but if you have a list of questions ready to ask to whoever it might be, that information can be broken down for you in a way that’s better to grasp rather than all the medical lingo you’re likely to come across.

I now ask questions to others who are in a similar situation, I ask about their experiences and we chat about what barriers we face, it’s nice to know that I’m not alone and I’ve realised that one simple question can lead you to some reassuring words by others. 

Utilising the conversations you’ll have with professionals, doctors and others who might be in a similar situation can lead you to a realm in the world of vision impairment that doesn’t seem as scary anymore.  

IT’S NOT ALL SAD OR NEGATIVE

Disability is often represented as something negative, something that makes us sad, brings tears to our eyes whenever we think about it but believe me when I say there are positives. 

Of course I can’t gloss over the fact that there are challenges and there will be times when you want to cry, but acknowledging that there can be even a glimpse of positivity in the situation can go a long way to helping you to build your strength back up again. 

I can tell that it’s a comfort to them, knowing that all these things and so much more is possible.

Focusing on just one positive aspect can eventually open the door to a whole lot more. 

FOCUS ON WHAT IS POSSIBLE

It’s only natural to grieve for what you think disability takes away from someone you’re close to and although it’s important to express those emotions, it’s equally as important to replace the things we can’t do with the things we can and to focus on those. 

Focusing on what your child can do can change your outlook and can be a key step in the road to acceptance. You’d be surprised how looking at something a little differently can help in terms of gaining a slightly more positive perspective. 

It’s about adapting tasks to make them more accessible and finding ways around the things your child wants to try. 

Your child might be the next Mozart, who knows, but it’s all about encouraging their interests and talents, finding ways of making them accessible if they’re not already and focusing on all the things they can do rather than dwelling on what they can’t. 

The fact that someone has a vision impairment or disability doesn’t mean that they can’t be as happy or successful as someone who doesn’t, remember that.

IT’S OK TO HAVE BAD DAYS

Despite the positives, we all have bad days and that’s ok. I’m a positive person but there are still days when I want to cry, times when I want to hide away. 

Your bad days might involve similar feelings or it might be because you’ve come across one misconception too many, well one is enough as it is. Or you might just be feeling like everything’s getting too much, that’s ok too. 

We might want to lock ourselves away with our feelings but it’s equally as important to let them out, to vent about our frustrations and to realise that we’re not the only ones going through this. There are people out there who are willing to listen. 

DON’T BE AFRAID OF STARTING THE CONVERSATION

Whether it’s with a professional, someone who’s in a similar situation to you or, most importantly, your child, it’s important to start the conversation about vision impairment. 

I know it can be difficult to talk about sometimes but when you open up the conversation about what support you or your child need or how something is affecting them, it might help them realise that it’s ok to talk about vision impairment or disability, it’s important and it’s nothing to be ashamed of. 

The conversation you might have been avoiding might be the key to making things just that little bit easier. 

YOU AND YOUR CHILD ARE STRONG

There will be times when you feel lost and broken, maybe even helpless but ultimately, what you’re going through will guide you to becoming a stronger person.

Sight loss and it’s consequences means that you’ll experience things that others might not be able to ever imagine going through, but even the most difficult of times can help shape us and the approach we take when facing other battles in the future. 

It might be frustrating, upsetting, difficult and all the rest of it at times but you will get through whatever challenge it is you’re facing, trust me. 

There are times when my family and I felt defeated by the challenges but we have eventually become stronger people because of them. 

CELEBRATE EVERY STEP

It’s inevitable that some things will be harder to complete because of someone’s vision impairment or disability, a lot of patience is required when completing some tasks so when they’re finally done, it’s important to celebrate that. 

You’re probably scared of letting your child do things independently, maybe a little apprehensive about how they’ll navigate this world which is so full of barriers but it’s so important to encourage them to do whatever it is they want to and celebrate the success when they reach their end goal. 

My parents were worried sick when I went on the train on my own for the first time, and for the second and third and every time after that for that matter, I was incredibly anxious too but you should hear our celebrations after I did it.

Knowing that we can do something on our own and celebrating even the smallest of steps can encourage and give strength to us all to move forward to the next one and that’s incredibly important. 

It can feel like you take one step forwards and two, maybe even three, steps back sometimes, especially when you come across barriers, misconceptions and inaccessibility. It’s frustrating, I know and so do my family but what’s helped me most of all is the support I’ve gained from them, the strength they’ve given me and how they’ve listened when the going gets tough. 

They’ve always encouraged me to be myself, try new things and they’ve never treated me any differently because of my vision impairment. 

I’d like to think my positive outlook has been a comfort to them too, it’s all about supporting each other at the end of the day. 

Although I’ve written a lot here (sorry, force of habit), I’ve only skimmed the surface in terms of the things I could share with you so remember that my blog comments and social media are always here if you’re wanting to ask or know more. 

I really hope this can help others who might be in a similar situation, I know how valuable it can be to hear from someone who is experiencing something similar to you and I only wish that my parents and I realised the benefits of it sooner. 

I’m sure there will have been things that I have missed so if you have any tips, advice or experiences of your own you’d like to share, please do go ahead. We all learn from each other at the end of the day and we can gain strength and comfort from other people’s words. 

You’re never alone. 

Elin x