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7 Insights for New Parents of Low Vision and Blind Children

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Over the past year, I have had the honor of connecting with many new parents of low vision and blind children. Across all of the different conversations I’ve had, some very common themes eventually arise in our discussions. Many of these parents, until the birth of their child, had never met a blind person, so they often feel in the dark in terms of how to move forward.

I want to share 7 insights I wish all parents of blind kids had. I hope these will be useful to readers.

Before we jump in, allow me to share a little bit of my own background with blindness. I was born with bilateral congenital cataracts and developed nystagmus, strabismus, and bilateral amblyopia. My current vision is 20/400. Or to put it more simply, I’m legally blind. I currently run a busy coaching and training company in New York City.

So let’s jump into those 7 issues.

1. Tough emotions.

Having a child is one of the happiest moments in a parent’s life, and yet when ocular conditions are discovered, that joy may be tinged with fear, sadness, anger, and the belief that “it must be my fault.” These emotions are completely normal. Don’t run away from them, and don’t let others tell you how you should feel.

However, if there are moments when those emotions are stealing your happiness, or they are taking away from time with your child and you would like to feel differently, there are some things you can do. The first is to realize that negative thoughts can generate even more negative emotions. It becomes a cycle of feel bad, think negatively, feel worse, have more thoughts, etc. Here is a simple technique to bring you back into the present moment, which can help you to feel a lot better. Bring your attention to your body, specifically the edges of your body. Allow your awareness to rest in the outline of your body, noticing where your body stops and the rest of the world starts, or where the rest of the world meets you. When you have a sense of that, shift your attention to your breathing and allow it to become comfortable and steady. Next think to yourself, “I’m present in the now.”

At first you might be tempted to engage in those thoughts again. Be patient with yourself, know the thoughts are not reality, and bring your attention back to your body. Take your time with this and practice it often. The more you practice, the more automatic it will become for you.

Take some time for yourself as well. Parenting can be overwhelming, let alone having to add on any medical necessities such as contacts, glasses, or eye drops. Schedule some time to relax and look after your well-being.

Finally, know that it is not your fault!

2. Fears for the future. Will my child have a normal life?

This is by far the most pressing issue about which parents are concerned, and understandably so, especially if you haven’t had much interaction with the blind community. But I always feel a twinge of sorrow when asked this. The sorrow is twofold — I can only imagine the concern parents have for their blind children, and it also highlights the problematic beliefs sighted people hold about being blind. I’ve never once considered my life abnormal, but I suppose in the eyes of someone who can drive everywhere and see the television from their sofa, the life of someone with low vision or blindness might, on the surface, seem abnormal.

If your child was born with or acquired low vision early in his or her life, their way of experiencing the world is perfectly normal to them. We don’t walk around thinking about how abnormal our experiences and lives are, because we do not know any other way of being.

Allow me to reassure you that the answer to your question is “yes.” Your child can have as normal or as extraordinary of a life as they want. Your child can excel in school, participate in extracurricular activities, live independently, have friendships, romance and a family, work, and achieve her or his dreams.

I would encourage you as parents to not settle for “normal” for your children. Society has a very limited view of what “normal” means for the blind, and it is usually wrapped up in either being Stevie Wonder, or more often, being completely incapable of doing well in school or living independently. Hold your blind children to high standards to help them succeed.

3. My child’s sight doesn’t seem that limited.

This one is specifically for parents of low vision children as opposed to completely blind kids. Vision loss is not predictable or always stable. Many of us experience visual fluctuations throughout the day or over a period of days. There are times when we can see better than expected, and other times we see a lot worse. This does not mean, however, that they have more vision than what the diagnosis suggests.

4. Accepting blindness.

It can be tough to accept that your child may not be able to do everything sighted kids do. There may be a temptation to downplay the sight loss or to hide it, out of denial or a sense of embarrassment due to the stigma of blindness. Please don’t do this. Your child needs exactly the opposite of denial and embarrassment.

Children learn their emotions and begin to build their self-image through the example set by their parents. If you reject that part of your child’s experience, they may reject that part of their identity. Some may even be tempted to hide their vision loss. This can set them up for a lot of hardship. Imagine a young adult who has hidden their low vision from their employer. They make a mistake on the job because of their vision, and they are subsequently dismissed for no other reason than they could not see and no one knew.

By accepting that your child has low vision/blindness, you are validating their experience of the world, and you are teaching them to love all of what makes them who they are.

5. Worrying about cane training.

The white cane can be a scary picture for parents, as it is both a public statement about disability as well as an indicator that the child really cannot see. Because, of this there can be reservations about signing off on cane training.

Please keep in mind that cane training is not given to all low vision children. It is based on an evaluation from your child’s mobility trainer and/or is in response to a strong possibility of further vision loss in the future. If training is suggested, it is because specialists believe that it will give your child greater independence and safety.

Some parents may worry about a social stigma around the cane, or that it will make travel more dangerous for their children. In terms of stigma, parents are absolutely right. It exists, and blind people can face some pretty big hurdles in terms of discrimination. However, that will happen with or without the cane. It’s is a fact of life. In my experience, however, carrying the cane tends to reveal the best in people. Strangers tend to be kinder, more helpful, and I get to speak with a lot more people than I used to before I took up the cane full time.

Canes make traveling a lot safer. They make it possible for us to see so we aren’t tripping over people or falling down steps. When my vision was better, I never used a cane, and the consequences were a broken foot, a chipped kneecap, and more bruises from falls than I can count. The white cane (and guide dogs) make travel much safer and encourage sighted people to be more helpful.

The temptation to refuse cane training is often at its core more about parents being self- conscious than it is about the child. Cane training gives your child a lifelong skill. It doesn’t mean they have to always use the cane, or even ever use it again after training — but it does give them the choice. Canes are not about fashion, they are a tool for independence and they can be lifesaving.

If you or your child happens to be fashion-conscious, there are some great fully customizable canes available through Ambutech and other companies. My suggestion is to stick with a white cane and only color accents, as white is more recognizable.

6. Learning advocacy.

At some point in your child’s life, most likely in regards to school, you are going to need to be your child’s best advocate. The state might not provide the right amount of support via qualified vision teachers and mobility instructors, the school or teachers might not allow for much needed accommodations, or something else entirely. In those moments, you’ll need to stand up for your child. Your child is protected both under the ADA and IDEA (Americans With Disabilities Act and the Individuals With Disabilities Education Act). Know your rights and don’t be afraid to advocate for your little one.

Of course advocacy doesn’t just mean standing up with things go wrong. There may be opportunities for you to help educate your young child’s classmates about their condition. This can help to create a more inclusive classroom environment and help your child to more easily build strong friendships.

7. Building connections with the blind community.

One of the best things my mother did for me was to enroll me in every blind children’s group in town. I split my summers between sleep-away camps and day camps specifically for blind and low vision children. The rest of the year we had a smattering of social outings, events, and activities. Looking back, these are some of my happiest childhood memories and also some of the most important. For those of us who do not go to schools for blind children, we spend our childhoods trying to fit into a sighted world where none of our school friends are like us. Joining groups and camps gives children the opportunity to make friends with other kids who are just like them, kids who know what it’s like to be dragged to countless ophthalmology visits; who know the struggles of learning Braille; who share in the same difficulties and accomplishments only familiar to the blind community.

These types of groups also facilitate sports and activities that are often not accessible in other areas of blind kids’ lives. These camps give children experiences camps for sighted kids and even schools cannot.

Taking part in these groups doesn’t mean your child is being limited to only blind groups or can’t join clubs or activities at school. It means they get to grow up knowing that they aren’t alone, and there are lots of kids out there just like them. It will link them into a community that they can choose to take part in or not for the rest of their life.

Finally, if you are a new parent of a low vision or blind child, please know that it does get easier. Your little one will grow up to be an amazing person. Your and their path is going to be unique, and you will grow together. Remember to be strong, and know that you have an awesome child who will have an incredible adventure in life.

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Originally published: December 7, 2016
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