Over the years, we have struggled with many things when it comes to helping our youngest son, Draven. For the longest time, everyone thought he was color blind. We tried everything we could think of to help him learn his colors. All to no avail.
I happened to be talking to a friend, who had a friend who worked with children who are blind. She offered to talk to her about Draven. She did, and her friend had an idea. She suggested that we use a black tablecloth and introduce one color at a time. To our surprise, it worked!
This led us to Draven’s diagnosis of Cortical Visual Impairment. With this diagnosis, we received assistance from the Texas Health and Human Services (HHS). After meeting with our HHS case manager, I found out about the Medicaid waiver programs. This one issue answered many questions we didn’t even know needed to be answered.
Cortical Visual Impairment (CVI) is caused by damage to the visual centers in the brain. This interferes with the communication between the brain and the eyes. The eyes can see but the brain is unable to interpret what it is seeing.
While working on a diagnosis, we were asked several questions: if he preferred certain colors, if he held his head a certain way to look at things, if he stared at the light, if it took time for him to see objects, if he had trouble reaching or picking up objects, and if he preferred certain toys or objects. Our answer to all them was yes!
Many things began to make sense to us. Draven likes to play in the window where the sun comes down directly on the window sill. He also has certain toys that he likes to play with and only wants to play with those toys.
He will hold his head slightly to the left when he is writing or looking at books. He prefers bright red and blue when he chooses or reaches for things. This big realization explained his reaction when we would ask him to pick something up off the floor or counter. At times, he would stare like he didn’t see anything, and we would tell him it is right there in front of his foot or right by his hand. Now we understand that his brain could not see it. Our family and school have made adjustments and Draven is doing well.
I am so thankful for a friend of a friend who shared an idea!
Over the years, parents of children with disabilities and special health care needs have told us many stories about dealing with bias, unfairness, racism, ableism or discrimination against their child.
Categories: Family Support
As the parent of a child with mild Cerebral Palsy, I learned that the word “hurry” doesn’t apply to my son, Jason. With motor planning difficulties, hurrying just wasn’t something he could do. I learned to adapt and accommodate our schedule to allow extra time. However, when I found myself in the situation of caring for elderly parents & parents-in-law, and our son, I struggled to find the patience I once had with Jason.
Categories: Family Support