By Kelli Shubert
I am sure most of you will never forget the day your child received a diagnosis that literally rocked your world at that very moment. The doctors gave me hope of healing and I hung onto that for a little while. The day her ophthalmologist looked at me and told me that there would be no improvement in her eyesight, and our goal is to keep what sight she does have stable, will always be a clear picture in my mind. The big question to myself in that very moment was “How am I going to tell her, and how am I going to make her life as normal as possible?” Those superhero instincts of a parent kicked in immediately and the stress that comes along with it!
From that point on, all the research and advocating started for our little girl. I turned to doctors for guidance on where to start. The search for the right magnifiers and tools began immediately. School meetings with teachers and counselors were scheduled. Scheduling doctors’ appointments became a full-time job. In the beginning, I sat back and listened and took in what I could. I was a voice for her in almost every moment. I was all-in with whatever was suggested and advised. Getting everything my child needed, and making sure that her teachers and I were on the same page, was a goal of mine.
While I still feel that some of this was very important at the time, Claire still needed a voice in all of this. This is her new life and I needed to make sure she was the one I was listening to the most. The more I sat back and listened to her, the more I realized that I needed to let her advocate for herself too.
Being the super parent is a battle that is never ending, and NOT AT ALL easy. Making sure that your child has what they need to succeed in school and life should never be something you ] take lightly. I am not going to lie: there were moments that I wanted to crawl in a hole and not come out. As time went on, Claire quickly learned that it was ok that she could not see something, and she was no longer scared to say something. The importance of teaching our kids independence through this time was something I learned along the way. Advocating for your child is very important in many moments when you feel their voice will not be heard. Finding the balance between being the superhero parent and letting your child find their new normal will take some time. Being a parent of a child with a special need is a gift. I try daily not to be too hard on myself and have learned to take one thing at a time.
If you just received your “diagnosis,” or if you’re still struggling to make sense of it months later – be patient with yourself. Parenting isn’t easy, and helping your child find independence with a visual impairment has added challenges. You’re going to have setbacks, but you’ll also make great strides. Be patient with your child, with yourself, and don’t be afraid to ask for help. You are a super parent, and you’ve got this.
Kelli Shubert is the proud parent of her daughter Claire, who is visually impaired. Kelli shares her story with FamilyConnect as a way to encourage other parents, and share what she’s learned.