Good morning fellow families of lovable children who have Cortical Visual Impairment!
This morning’s Mom on Monday is Olivia’s mom, Dixie, from Kentucky. Dixie is a Teacher of the Visually Impaired for Visually Impaired Preschool Services (VIPS) in Kentucky. She provides early intervention to infants and toddlers with ocular visual impairments or Cortical Visual Impairment. She also provides support to their families who often struggle to understand their children’s diagnoses. Dixie has the unique perspective of experiencing a CVI diagnosis as a mother and of guiding other parents through their CVI experiences as an educator. She was kind enough to take time out of her schedule to speak to me while driving home from vacation.
Image: A smiling young girl and a woman in glasses.
What does Olivia like to do? What makes her laugh? What are some of her favorite things? Olivia is almost 14 years old and enjoys the things most teenagers enjoy. She loves watching movies and TV. Her favorite foods include hamburgers and spaghetti. She is not a fan of fruits or vegetables. Olivia loves gymnastics and tumbling. She loves playing outside. She loves her dog. She has a huge sense of humor. She is always smiling or giggling about something.
When did Olivia join your family? I had started providing foster care and was working as a Developmental Interventionist for First Steps (Kentucky’s early intervention system). Olivia’s biological mother was a drug addict. At 2 months old, Olivia had been rushed to the ER because of malfunctioning valves in her heart. She was pronounced dead at the hospital, but was resuscitated. She experienced oxygen deprivation during all of this. Afterward, Olivia entered foster care and was staying with a foster parent who was a friend of mine. They were waiting until Olivia was 6 months old to be able to perform surgery to fix the valves. My mentor kept telling me, “Your daughter is down the street.” I met her 10 days before surgery and fell in love with her. The adoption was finalized when she was 9 months old.
How was Olivia’s early intervention experience? We knew there was some brain damage because of her other diagnoses, Down syndrome and Fetal Alcohol Syndrome, and heart failure. We did not know the impact it would have. Olivia rolled over at a typical age of 3 months, but she lost skills as a result of the surgery. At 9 months old, we started over. She essentially lost a year of her life at the beginning. She had developmental intervention, speech therapy, and occupational therapy. Olivia always loved to look at books in her developmental therapy. When she was a baby, she would watch Baby Einstein videos. CVI did not occur to me.
When did you first learn about CVI? I knew her vision was off. Over the years, we went to 3 or 4 different eye doctors. When she started kindergarten, they said she was a little farsighted. They said Olivia needed glasses, that all children with Down syndrome need glasses. Then, they said she needed bifocals, but she just kept looking over the top of them.
By this time, I was working as a Teacher of the Visually Impaired for VIPS. I asked for a Functional Vision Assessment at school. The school refused saying there was no diagnosis of legal blindness.
We went to Cincinnati Children’s Hospital and saw Dr. Robert North. He referred us to the Cincinnati Association of the Blind to do a Functional Vision Assessment. When they began testing, they started making modifications for CVI without explaining what the modifications were for. I recognized what they were doing, watched her respond, and realized that she had CVI.
Then, the lightbulbs started going off. I started to think about times when she was smaller and behaviors I did not understand.
Olivia had bad nystagmus as a baby. She never crawled outside of the living room except for one time when I was vacuuming. She ventured out to follow the vacuum all over the house. Until then, she would not go out of the living room – the familiar environment she knew.
How were you given the diagnosis? The Cincinnati Association of the Blind sent their report to Dr. North at Cincinnati Children’s Hospital. He gave us the diagnosis. He was the first doctor we had seen who took the time to look at Olivia’s history and not blow us off.
How has CVI been addressed in Olivia’s school setting? When we came back with Dr. North’s diagnosis of CVI, she automatically qualified for vision services and federal quota funding.
Despite our trip to Cincinnati Children’s Hospital and our prescription from Dr. North, the school’s TVI informed me that Olivia didn’t have CVI. The TVI announced that Olivia was colorblind.
I told her, “You’re not an eye doctor.”
I had not told the school system that I was a Teacher of the Visually Impaired and that I was aware of the laws that regulated education for children with visual impairments.
I provided the first lightbox to Olivia’s school. I borrowed it from VIPS. As soon as they figured out it was working, they ordered one for their school.
It had taken a year to get the CVI diagnosis and to get the school system to recognize that Olivia was visually impaired. By the first day of school in 1st grade, she qualified for “vision services,” but I don’t know how much vision support she got.
We eventually went to see Dr. Roman because Olivia was in Phase III and folks didn’t know what to do with the higher levels of CVI. Dr. Roman helped me realize that some of Olivia’s communication delays were really related to CVI. She would often mix up the pronouns “him” and “her.” Olivia would sometimes look at a girl with short hair and say “him.” Dr. Roman explained that it is hard for children with CVI to figure out the details that define people and their gender.
Her school experience at the time was frustrating. For 2 years, she had the same list of 15 sight words because she wasn’t learning all of them. We lost a lot of time with this because the school didn’t realize that a word has to have meaning to Olivia for her to learn and to recognize them.
She learned words like “mom” and “dog” because she has a mom and a dog in her life.
Little words like “a,” “an,” and “the” don’t have meaning. “It” was on the list. How do you define “it”? “This?” How do you explain the word “This?” And, you don’t really need the word “The.”
The longest word on the list, “friend,” was the one she learned because it had meaning for her. It had a clear definition she could understand.
In teaching reading, I started to realize that the little sight words also create visual clutter. We started using a curriculum for whole word learning which has a lot of similarity to how Dr. Roman uses highlighting and bubbling words. (EdMark Reading Program)
What would you tell a mom whose child has just been identified with Cortical Visual Impairment?
Cortical Visual Impairment doesn’t stand alone. The children with this diagnosis usually have other diagnoses. Many of the families I work with don’t know what CVI is. They just hear “blind.” They don’t know CVI can improve. When the vision of a child with CVI does improve, I get the joy of seeing their families experience moments that other parents would just take for granted.
Also, trust your mother instinct. If something doesn’t seem right to you, keep asking. Keep advocating.
My mom often tells me that everything has a season. Both good or bad. When something seems really bad, it will not last forever. Everything has a season.
It has been so important for me to have that village of people you trust and who know and understand your child. You need a village.
What do you know now that you wish you had known?
I definitely wish she had gotten the CVI diagnosis sooner. We wasted a lot of time not knowing about her vision.
What would you like people who’ve never heard of CVI to know? That visual clutter is everywhere. Complexity will never go away 100%. I educate people on that everyday in my job. And Phase III is hard for people to understand. People don’t realize Olivia is visually impaired.
Every child with CVI is different.
Hopes and dreams? I just want her to do something that allows her to be a functioning member of society. She loves babies and animals. I hope she can eventually get a job doing something she loves. I want her to be happy.
Thank you Dixie for sharing your experience! Thank you for serving families like ours. Thank you lovely Olivia for sharing your mom with us.