What Is the Hardest Challenge You’ve Faced as The Parent of a Blind or Low Vision Child? (Plus, Resources To Help)

Hi! If you feel alone raising a child who is blind or has low vision, I hope this collaboration with our friend Chris Webb of Our Blind World will help!

Last week on Instagram we asked the following question: What is the hardest challenge you’ve faced as the parent of a blind or visually impaired child?

The responses were plentiful + eerily similar + fell into three categories: Acceptance, Community & Accessible Education.

Below are the responses from our followers* + some resources that may help.

Acceptance

The emotional aspects of sight loss that occurred in his early 20s. The grief and loss and heartache. The anxiety and depression. Sadness.
Getting a diagnosis.
Acceptance for sure. Currently, our biggest challenge is sleep which I think is a unique struggle for those with totally blind children.
I realized that no one else was going to come to fix the broken system(s) for me, and I would have to face our giants. So, we are.
Grieving the loss of eye-to-eye connection with my son was extremely hard. I miss being able to look my son in his eyes and for him to know just how much I love him by the way I look at him. However, challenging this has been, it has helped me grow tremendously as a person, and in ways I’m so grateful for! I can and will continue to do the hard things and so will my son!
The eventual diagnosis was incredibly difficult to accept. Once we got past that and realized that it was up to us to empower our child – now 17 – and make sure he had the tools to move forward in life and get the most out of it, we realized that his limitations were those imposed by others. From then on, we looked at our son’s journey from a different perspective.
For me, it’s just letting him be a boy who wants to run, explore, and have fun. Mom has to step back and not hover, to let him have a bump on the head or trip over a log (within reason) to allow him all the room to explore and learn about the environment. It’s hard and Dad is much better at not hovering so sometimes I just have to turn around and drop the bubble wrap!

Community

Finding fun activities for her to do.
Security, security, security. We live in a dangerous city and there is no possibility we will allow her to go out alone. She feels she needs to be independent but it’s not possible in our city.
Watching his cousins run around playing together knowing he isn’t included in that.
Being a parent of a blind child has very different challenges for each stage of growth. My biggest challenge in this stage is trusting all the new people he encounters to treat him fairly, kindly, to offer assistance if required, and to offer friendship which is always needed. Loneliness is always an issue until he befriends a few people. We always anxiously wait for the news that that has eventually happened!
Making sure my child is included in activities and helping other people understand that my child can do pretty much the same things as their kids.
There are always people who will be difficult and challenges that seem insurmountable, but on the other hand, there are a lot of resources available.
From watching kids like Kai (Navigating Blindness), and many others on IG, I feel like it’s possible to get past the tough stuff. It’s not always a straight line.
When she was younger it was easier for her to make friends. Now it seems her only friends are on social media from all over the world. It’s been very different this first year of college because most of the students do not include her because of her limitations.

Accessible Education

Fighting for services, pretty much everything our children will need!
Fighting for services!
Fighting for (quality) services, low expectations, pity (the absolute worst part), and just the general disinterest in making things accessible – even though a small effort would make all the difference (and be very appreciated).
Fighting for services.
Low expectations!!!
When we started looking at options for mainstream high school, the special needs rep at one school we visited started tsking and seeing problems with how our son was going to navigate his way around the school. At that point, we realized that school was not the right one for our son. We did find a school with an incredible team of people who made it possible for our son to be included and educated.
The balance between making sure people allow her independence/ do not hold her back, while also making sure they understand how significant her disability is and that she does in fact need the accommodations/ services/ safety/ etc. that she is entitled to.
As of now, at 4 years old, we’re fighting with the school to obtain on-site vision therapy (not virtual).
Aside from getting a diagnosis, the hardest thing was getting braille and tactile graphics for high school math & science courses. We kept fighting and ultimately went to mediation — and got it!
Being a strong advocate has been extremely hard for me. I’m the type of person who would rather just be quiet and not ask questions, and get through life without drawing attention to myself. But very early on in this journey, I realized that, for my son, I would need to use my voice A LOT! That I was going to stand out, that I would have to ask the hard questions over and over and over again, and that whatever the team members (IEP & Doctors) thought about me didn’t matter, that almost every day I would have to interact with a team of people that may have some pretty strong opinions about me because I make their jobs harder.
Getting an appropriate education.
I was the first Blind/Visually impaired to graduate from the high school I attended.

Any surprises here? No.

Our family has ‘been there done that’ and so have many other families and blind adults. Thankfully, many of us are willing to extend a hand to help.

Parent Support Groups

Parents need support to understand and accept their children’s diagnoses. Since childhood blindness is a low-incidence disability it’s often difficult to find local support. Thankfully, there are many virtual support options available. I’d recommend you tap into the following free or low-cost virtual support group resources. The bullets below list the best way to contact the resource:

APH Parent Connect Support Call (Call 800-232-5463)
Partners for Pediatric Vision Virtual Support Group (email: DianeLChristian@gmail.com)
Power of the Moms Virtual Retreats (email: becky.LCMHC@gmail.com)
Thriving Blind Academy

Resources for inclusion and building community

Parents need schools, local community organizations, friends, family, and neighbors to include their children in sports, events, and gatherings. I’d encourage parents to seek out camps for kids who are blind and low vision. These camps and events helped my son, Kai, to meet peers, build independence, and confidence. In addition to peer support, I’d also recommend that parents seek out mentors for themselves and their children. Preferably, connect with a mentor who is a little bit ahead of you on the journey and who has similar interests such as music, sports, etc.

Hilda Dunford of @OurBlindSide and I collaborated on a post listing our favorite camps and ways to keep our blind kids involved and active. You can visit the post by clicking here.

Resources for understanding your child’s educational rights

Lastly, did you notice how many times the word ‘fight’ was mentioned? Eight!

Fighting is exhausting. Parents need support, and thankfully, there are advocates and educational resources available to help. However, the cost of help often keeps parents from requesting support. Below is a list of my favorite free educational resources that address everything from understanding your child’s educational rights, to Individual Educational Plans vs. 504 Plans (hint: our kids need an IEP), and transition services. Click on the links below to go to their websites.

Blind Early Services (Serves children birth to 5 in TN but information is helpful for families nationwide)
Wrights Law (All ages)
NFB’s National Organization of Parents of Blind Kids (All ages)
AFB’s Family Connect (All ages)
Perkins School for the Blind (All ages)
Bridges Help Desk (Support for children transitioning from high school to college or career. Services MD but information is helpful for families nationwide)
Lighthouse for the Blind (Search for your state. Serves adults and offers some programs for kids.)
Navigating Blindness discusses educational access and mediation

If you are a mentor, advocate, or resource provider who provides free or sliding-scale assistance to families of blind/low vision children, please drop your information in the comments. We’d love to connect.

We are stronger when Navigating Blindness together.

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About this collaboration

Navigating Blindness is run by Kim Owens (Mom) and Kai (Blind college student). Together, they create content to support parents of blind children. Instagram @NavigatingBlindess