This week’s Mom on Monday is Tiffany. She answered the questions posed by CVI Momifesto with her perspective as Wyatt’s mom and, also, offers words of advice.
Introduction: Your first name, your child’s first name and age, the state you live in.
My name is Tiffany. My son’s name is Wyatt. He is 1 year old and we live in Missouri.
About your child: What does she like to do? What makes him laugh? What are her favorite activities? What do you like to do as family?
Wyatt likes to watch his sister dance around and be silly. He also likes to be tickled and play peek a boo. He will laugh any time we shake our head back and forth. I think it’s the movement since a part of CVI is movement.. He really liked to play with party bows when he was younger. Now he is more into playing with balloons and therapy balls.
When did you first learn about CVI?
We first learned of CVI after seeing the ophthalmologist when Wyatt was 3 months old.
How were you given the diagnosis?
By the ophthalmologist. After the eye exam, the nurse came in with a pamphlet for a near by blind school saying how amazing they were. As she handed it to me she had tears in her eyes.
Does your child have other diagnoses you’d like to mention?
He had a stroke at birth that resulted in significant brain injury and hydrocephalus. He has ataxic Cerebral Palsy, CVI, and dystonia.
How is/was your child’s Early Intervention experience with regard to CVI? (Were your providers knowledgeable? Were they open to learning?)
Sometimes I feel like I know more. I also feel like because they haven’t heard certain info that it isn’t as relevant because I’m telling it to them.
What do you know now that you wish you had known at the beginning of your journey as your child’s mom?
It’s hard! You will have to readjust your way of thinking, your goals, and how your child will develop on their own terms and time.
What would you tell a mother whose child has just been identified as having CVI?
Mention it to everyone. You will be surprised who can provide you with extra support and resources.
What would you like for people who have never heard of CVI to know?
Hopes and dreams? Anything else you’d like to add?
Vision is a big part of learning. More people need to know about CVI so we can start earlier with proper goals and strategies. I wish there was more resources.
Thank you, Tiffany and Wyatt! More people do need to know about CVI. You are helping get the word out.
CVI Momifesto welcomes perspectives of parents of children of any age with CVI. Every parent’s story is important. Your willingness to share your experience can help other parents facing similar questions and challenges.
Send in your story, or answer the questions above and send them to firstname.lastname@example.org.