Motherhood with Usher Syndrome

It says, "Motherhood with Usher syndrome; Happy Mothers Day, May 8, 2022" There is an image of pink roses next to the title.

Mother’s Day is quickly approaching. While parenting, in general, is filled with challenges, being a parent with Usher syndrome adds an additional dimension to the world of parenting. But make no mistake: #USHmoms are amazing. I may be biased. I am a mom of two daughters and I have USH2A. Having Usher isn’t easy, and being a mom can be tough - when you combine them, some days may be really difficult. But it’s also pretty rewarding. As one mom told me, “We’re very creative! We’ll find a way!”

I reached out to a group of USH moms to ask for their advice for parenting with Usher. 

Thank you to Meagan, Krista, Kacie, Marie, and Andrea for sharing your helpful tips! Happy Mother’s Day!

When Your Kids are Younger:

  • Learn what works for you to be able to hear your baby at night. Research technology and learn to use it to your advantage. Don't be afraid to use unconventional methods and think outside the box. I used a baby monitor that vibrated and wore a nightshirt that had a pocket. I put the device in that pocket so I could feel the vibration. Now there are things such as the VibraCall and Serene system that work in this manner.
  • If at all possible, find housing that will be within walking distance of your child's elementary school and a store where you can get basic essentials if needed. This will allow you to walk to the school and be involved if you would like and not have to rely on others as much. 
  • Teach your kids to pick up their toys or put them into a bin.  We used a large eight cubicle cubby with large bins in it for the kids to put their toys away. They didn't have to put them away neatly but as long as it was in the bin and off the floor, it kept the floor clear for me. If something was left out and broken because I stepped on it, that was the consequence of not picking up their things.  
  • As a legally blind mother of two boys who are 7 and 9 years old, patience and kindness are some keywords that come to mind. 

Parenting Older Children:

  • I am a mom with USH and have two teenagers. I involved them in my disability once they were older. It is an expectation for them to have acceptance and thus, their acceptance of me has turned outward to have a better acceptance of classmates and others. We work on having patience and a tolerance for one another.
  • When they are older, thank them for assisting you when you need guidance or help to find things, etc.
  • My teens understand accessibility in a way they might not if I didn’t have Usher syndrome. Not only do they strive to ensure our home is accessible and safe for me, but my kids are also mindful of other facets of accessibility, such as making sure they caption their content on TikTok and Instagram.

Motherhood in General:

  • Your kids will love you just the way you are - you are their mom!
  • Breathe, stay in the moment. Meet other parents and children with Usher syndrome. Find an exercise you enjoy for stress relief. Educate yourself. Find a retinal specialist near you for annual checkups. Get your kids involved in all sorts of activities. No boundaries.
  • Learn to advocate for yourself, even with your family.  Explain what you need and never assume that they should know/understand it from seeing it. My husband will walk right past an item on the floor and "not see it." I used to get angry at him for not seeing it and doing something about it. Once I took the mentality that I cannot expect my husband or my kids to be mind readers, to advocate for myself, life got a lot more peaceful!
  • Seek your doctor's offices as close as possible and/or find a doctor that has Saturday hours or virtual appointments to allow for more options for transportation to appointments. 
  • Be the mom you want to be. We’re very creative, we’ll find a way! It may be different than how other moms get things done and that’s okay!
  • Give yourself some grace, admit when you are wrong, and be honest with your kids when you make mistakes or miss something because of your vision/hearing. Don't try to hide it, they will pick up on it and know it.
  • Being a mom is very challenging and rewarding. You’ll learn just how strong, brave, and silly you are, and your kids will be more compassionate and empathic people. 
  • My kids are my motivation to keep moving forward, to learn cane training, to venture out in uncomfortable situations, to learn the technology. We even enjoy public transportation together - so much more meaningful to spend time together than to worry about how to get to point B from point A. More often than not, my kids are better at being a human guide than lifelong family members and/or friends, and they’re often the first to support me in any adventure
  • My advice is to enjoy the journey of motherhood, enjoy the moments, be present, and love well. 
  • Always keep the lines of communication open. Tell your kids what you see and hear and ask them if they have questions. Being honest with them about your feelings about your vision loss teaches them to be compassionate and understanding, and learn how to advocate for their own needs. 
  • Every parent has their own method of parenting; I think a good balance of free-range parenting and helicopter parenting is good to have. It’s been important to me to raise my kids somewhat independently as my vision tunnels. I cannot see every move they make. It’s okay to accept or ask for help. As I’ve gained confidence using my cane in public within the last couple of years, my kids are witnessing their mother being brave; that’s exactly what I hope they remember when they can go from fearful to courageous.
  • Get yourself plugged in early on with a mom's group and don't be afraid to ask for rides to and from things.

Happy Mother's Day, USH moms!