One of the questions I am asked most often is when to tell your child that they are deafblind or that they will gradually lose their hearing and vision. As a parent myself, it was difficult to receive the diagnosis. I still remember that day like it was yesterday and it wasn’t a positive experience. The diagnosis felt rushed. We were given few resources, and little hope. It took us over a year to even find someone else who had Usher syndrome (this was 20 years ago when it was harder to connect).
One of the most difficult decisions you may face as a parent is when and how to tell your child about their hearing and vision loss / diagnosis. I think one of the reasons I worried a lot about this is because the way we were told as parents produced a trauma response. It was scary! No parent wants their kids to have that type of experience.
Our oldest son was born profoundly deaf and then was diagnosed with Usher syndrome type 1b around the age of 5, which meant that he would likely be losing his night and peripheral vision at a young age - but no one could tell us exactly when because everyone’s progression is different.
My husband and I discussed when to tell our son, Conner, and his younger brother, Cole. They were so young, and we were still grieving ourselves, trying to learn about Usher syndrome. I didn’t want to tell our children until I had come to terms with it myself - and frankly so that I could talk about it without crying. I also wondered what to say because it was hard enough to grasp for us adults, let alone young children. I wanted to have enough knowledge to be able to answer their questions.
We ultimately decided to talk about it while they were still pretty young, soon after the diagnosis, when Conner was 5 (Cole was 4). This felt like the right time for us because we felt better prepared. We had connected with other families, we had a support team in place at school, we had Conner fitted with glasses and found strategies so he wasn’t so afraid in the dark. Our grief had not gone away though and I don’t know that it ever will completely - it still rears its head once in a while, even 20 years later.
We began small, age-appropriate discussions - talking about his hearing devices and why he needed them and his glasses and why he needed those. We didn’t specifically talk about Usher syndrome at that time because he wouldn’t understand that. But, a few years later when we started going to more specialists for his eyesight, we began talking about Usher syndrome. We felt it was the right thing to do because he would overhear conversations we were having.
For our younger son, Cole, these early conversations were very important. I honestly wish I would have talked about it earlier and been more open with him about the challenges. As Conner’s brother, Cole took on a natural caretaking role that we didn’t always understand. He would turn lights on for Conner. Help him if he tripped. Watch out for him at school if peers didn’t treat him fairly. When I think back on all he did and how hard that was for him, it breaks my heart that we didn’t fully understand the full impact on him - and give him ways to express his feelings of grief. If I were to do it all over again, I would have spent more time talking about our feelings of grief with him and with each other. Instead we all grieved separately in silence.
Around the age of 7-8, we were having really honest conversations with both our boys. This was right before our youngest son was also born with Usher syndrome. To this day, I’m glad we chose to talk about it honestly as a family because it helped us to talk together about Dalton’s diagnosis.
I am amazed at what knowledge our kids were able to process at a young age. I wish they didn’t have to because I worry that they had to grow up quickly because of their life experiences. Prior to our discussions, it was clear they suspected something was off. I think that if we hadn’t been honest, they may have anticipated something even worse and felt isolated and alone.
Conner especially taught me so much. After Dalton was born also with Usher syndrome, I was depressed. We had come so far with Conner with the therapies, etc. but I was exhausted and didn’t think I had the energy to do it again. I didn’t know if our advocacy efforts were helping and I was just happy if I found the time to take a shower.
Conner sat with me and said to me (at the age of 10), “It’s ok mom. I’m happy and Dalton will be too. There is a reason this is happening. I don’t understand what that is but there is no sense living with regret.” I couldn’t believe it, and I still don't know how he managed to be so strong then and still is today. Every time I think back to that conversation I cry and I am filled with such deep love that I didn’t know I was capable of. His example has inspired me. I have been able to advocate for others and most importantly get up every day to do it over again.
I hope our story is helpful to other families.
Now that I’ve shared our personal experience, it is important to keep in mind that every child is unique and every family is unique, and there is no one-size-fits-all approach to this conversation. However, here are some tips to help you determine when to tell your child, as well as some strategies to make the conversation easier. But, remember: this is hard stuff. Give yourself some grace and reach out for support if you need it.
See the below file for more tips and strategies.
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