Seven years ago parents Jon and Katie Vandrell sat in the doctor’s office getting an ultrasound of what they believed to be their second perfectly healthy baby girl. At the end of the appointment, they left with a weight far heavier than a set of photos to display on the fridge: there was possible swelling in Lucy’s brain.
Throughout the years at the Little Light House, Kian has learned that his strength comes from the Lord. When Kian is having a tough day, we remind him to seek joy, to which he replies, “Whoo Hoo!” and starts singing “I’ve got that Joy, Joy, Joy, Joy…” Though blind, Kian never stops seeing more of the world, and we know that this is just the beginning of his incredible journey!
Being a first time mother at the age of 19, I felt scared, overwhelmed, and unsure about our future. All I knew in that moment is that I loved my beautiful baby girl and we would be all right.
Upon a diagnosis of Down syndrome, doctors typically tell you every additional thing that could happen to your child as a result of them having Down syndrome. They informed us that there is a 2 to 3 percent chance that children with Downs may develop leukemia. Luna was a part of that percentage and was diagnosed with cancer at age 3.
At times it can take months to discover what each child is trying to communicate, sometimes longer. However, there is one thing we have learned time and time again, just because a person can’t speak does not mean they do not have anything to say. We just have to take the time to learn how they are saying it.
The key is to place opportunities for the child to see throughout their daily routine. It becomes easier and easier for CVI kids to see these objects as they become familiar with them. It can also be helpful to keep one familiar object with your child throughout the day. This allows the child to learn to recognize the object in different environments.
If you are working with a child who is uninterested in writing or coloring, my advice is this: Stop worrying about coloring and start by engaging them in what they are interested in! Over time you can begin to shape their interest into a writing activity as well as build the fine motor skills they need for writing.