Navigating the world of vision impairment as sighted parents: A Q&A with my mum and dad

I truly believe that a vision impairment (or any other disability) affects the people around you, they are a huge part of the journey too.

 

My blog is filled with my own experiences of vision impairment, so I wanted to do something a little bit different and share my mum and dad’s experiences.

 

My parents are the two people that have been by my side every step of the way, from finding out their tiny little girl was blind, to where we are today. They’ve been through the good, the bad and the ugly.

I have a very close relationship with them, and know that I am extremely lucky to have that. They support me in everything that I do.

 

My mum and dad are a big part of my blog, they do a lot of the behind the scenes work – they are the ones that take all of my photos, the ones who decide which are the good (and not so good) pictures, and they’ll often share their thoughts on my posts with me.

 

Back in 2018, I got them involved even more and gave them the challenge of writing a blog post themselves. They delivered, and wrote a wonderful post about their perspective on my vision impairment.

Well…I’ve got them back for another post!

 

My vision impairment has had an impact on their lives as much as it has mine, sometimes just in a different way.

So, I thought that we’d talk about their thoughts and experiences of having a daughter with a vision impairment, and what better way to do this than a Q&A.

I took to Twitter to see if any of my followers had any questions for my mum and dad about what it is like to navigate the world of vision impairment as sighted parents, or any advice they were looking for in terms of having a blind or visually impaired child. As always, I received some great questions and selected a few of them to answer. I also threw in a couple of questions myself as well.

 

I hope this Q&A with my mum and dad is helpful to you or someone you know.

 

How did you feel when you found out about Holly’s vision impairment?

Initially, we felt shocked, as the world of vision impairment was new to us. Holly and her twin Natalie were born prematurely, and Holly was diagnosed with Retinopathy of Prematurity. Sadly, Natalie didn’t survive.

Having lost Holly’s twin Natalie, it didn’t seem fair at the time.

The manner in which we were told was very poor, matter of fact and without compassion. Having to deal with the loss of Holly’s twin sister, plus a vision impairment diagnosis was a lot to take in.

Over time, we began to understand more about the world of vision impairment.

 

How did other members of the family take the news of having a relative with a vision impairment?

Both sides of our family were very supportive, they weren’t phased by this at all.

They have always treated Holly equally and no different to any other members of our family.

 

Were you given good advice and support?

Initially, no not at all.

We were given no indication as to where to turn to for advice, and all of the support we did receive we had to find ourselves.

Once we found the support and advice, we did find some of it useful.

When Holly was around 2 years old, she saw a Specialist Therapist who interacted with her through play. She gave us advice on how to make play accessible and enjoyable.

 

When Holly started school, we received a lot more useful support.

As she got older, she started to do more research herself, and found information from sight loss charities and organisations. We always take a keen interest in this.

 

What worries did you have when Holly entered primary school?

It was a fear of the unknown – whether a mainstream school environment would be the right place for Holly. Despite all of the worries and anxiety we both went through, it turned out to be a very positive experience.

She thrived in the mainstream school environment and fit in just like her sighted peers.

The support from her Teaching Assistant and QTVI (Qualified teacher of vision impairment) was excellent. They were helpful and nothing was too much trouble.

Therefore, we went through primary school with very little concerns.

 

What worries did you have when Holly entered secondary school?

We were anticipating that things would run smoothly as they did at primary. However, they were the complete opposite.

If we could give parents any advice, it would be the following: do not be afraid to challenge the school, because their way of teaching a child with a vision impairment is often ruled by budgets and what is easier for them.

We had to fight for what Holly was entitled to, in order for her to achieve her full potential.

The Teaching Assistants were extremely good, and had it not been for them fighting Holly’s corner alongside us, things would have been much different.

The specialist equipment and software was difficult to obtain, and looking back, there was a lot of equipment available that could have really helped her throughout her time in education, which we weren’t aware she could have had.

Having said that, Holly’s grades were very good, but that was down to her own hard work and effort.

 

Do you have any tips on supporting your child’s confidence and self-esteem?

Don’t wrap your child in a security blanket, they need to learn to stand on their own two feet. It may seem daunting, but it helps them in the long run.

Always think about adapting things. Just because a child has a vision impairment, it doesn’t mean to say they can’t do something, even things you may think only sighted people do.

Never stop blind and visually impaired children from doing the things they want to do. Things are very much achievable.

 

What has been the biggest challenge for you as a family in terms of Holly’s vision impairment?

The biggest challenge for us was fighting for the things that Holly was entitled to, especially at secondary school.

 

What did you feel was the most nerve-wracking thing for Holly to do independently?

When she travelled abroad alone for the first time.

Leaving her at the airport knowing there was nothing we could do to assist at either end of the journey was very daunting.

Nevertheless, we were extremely proud of her to take that step.

 

Do you have any advice for a parent who’s blind or visually impaired child is embarking on their university journey?

Encourage, not discourage. Don’t stop them if it is something they want to do.

Student life plays a big part in a young person’s life, so encourage them to get involved in all aspects of the university experience.

Make sure that they know how to advocate for themselves as this is key in all aspects of life.

They should always have the confidence to ask for help, support and guidance. Asking for support should never be seen in a negative way as it is something they are entitled to and can often benefit from.

 

What are your thoughts on Holly’s work within the disability sector?

We are very impressed with the work she is doing helping other people and encouraging others to achieve their potential.

 

What do you think is the biggest misconception surrounding vision impairment?

People assume that just because a person has a vision impairment or any other disability, it means they are incapable, but in fact they are the complete opposite.

Blind and vision impaired people need to be given the opportunity to prove and succeed, just as Holly has.

 

Knowing what you know now, what advice would you give to other parents that have been informed their child has a vision impairment?

Don’t be afraid to ask what support is available for you and your child.

Don’t stop your child from doing the things that they want to do, try and think of an adaption that makes it accessible.

Let them be their own person.

Encourage them to strive for their ambitions.

Always be there to offer advice and support when they want it.

There isn’t a book on navigating the world of vision impairment, so write your own chapters.

As hard as it can be, the positives far outweigh any negatives.

 

Thank you so much to my mum and dad for taking the time to answer these questions, it has been great to share their experiences and perspectives of vision impairment.

Over the years, my mum and dad have helped me learn to love my vision impairment which has given me the drive to become an advocate for myself and others.

 

I hope this post is helpful to some of you navigating the world of vision impairment as sighted parents.

 

If you can relate to any of their thoughts or experiences then please chat with us in the comments, or over on social media.

 

Are you a parent of a child/young person with a disability? If you’d like to share your thoughts or experiences then let’s have a chat in the comments.

Holly x