Non-verbal Type 1 Child Stuns Art World
Ocean Scott just had his fourth birthday. He celebrated by gleefully popping all of the balloons that his mom, April Sandvig, filled his room with. Less than a month earlier, Ocean hit another big milestone—his first diaversary.
Immediately after being diagnosed with type 1 diabetes at the age of 2, Ocean’s speech development came to a screeching halt.
Despite not being able to fully communicate his feelings verbally, Ocean has found a way to express himself that speaks just as loudly. At just 4 years old, Ocean is a gifted painter.
“What he does is definitely abstract,” April said. “He figured out that he could slide the paint, which is a technique where it’s all swirly. It’s him having fun and playing, and it’s therapy.”
Ocean’s paintings are done primarily by rolling his favorite car toys in the paint and then onto the canvas, but he has recently started experimenting with electric trains.
“Because it feels so safe to be at home, it became something we could do so that he could express himself.” April said. “Without having the speech, he needed a way to get his feelings out.”
April admits that there is a distinct artist gene in their family, (April being passionate about crafting, and her husband, Scott, being a musician and doing metal work), but that Ocean’s talent as a painter is uniquely his own.
“You have to find the thing that makes you feel like you, and makes you feel present. And that’s what he is doing with his art,” April said.
“His diaversary was even more emotional for us than I imagined,” April said, reflecting back on her son’s traumatic diagnosis last year.
After bringing a very ill Ocean into the small local hospital near their home near Salem, Oregon, and hearing the “D” word—it would be 12 hours before they could transport him and get insulin into his system at the Children’s Hospital via a temporary catheter.
Ocean was in severe diabetic ketoacidosis (DKA).
“His speech had already stopped progressing before the DKA,” April said. “I’m assuming because of the high blood sugars.”
April says that Ocean’s delay in speech progression due to trauma from the DKA and potentially from swelling on the brain is not something that Ocean’s doctor has often seen, but that doesn’t mean that it hasn’t happened before. Since Ocean’s story is shared more and more, April has already been getting e-mails from other parents of type 1s whose child experienced the same thing.
“He still always has had his own language. But there was nothing that we could understand anymore.”
April said that within the last few months, Ocean has begun to progress by mimicking, which he has not done since before his diagnosis.
A little over a year after Ocean’s diagnosis and finding his love of painting, April says that they have found a rhythm as a family. Their next goal is to start taking walks again once the weather is warm.
Due to Ocean’s slight allergy to tape and the fact that April and Scott already check his blood sugar very frequently, they have decided not to put their son on a pump or a continuous glucose monitor (CGM) at this time and to keep him on multiple daily injections (MDI).
“Ideally, I would love for it to be his choice,” she said, acknowledging that one day a pump and/or a CGM may be the right choice for him. “Right now he is doing great as far as his A1c goes,” she added.
April and Scott are extremely passionate about promoting DKA awareness so that the symptoms can one day be easily pin pointed for both children and adults in the future.
“If I had known the signs of DKA I would have been able to go to the doctor much sooner and say ‘Check his blood!’” April said. “I had no idea that these things added up to something. No one had educated me yet.”
Many of Ocean’s paintings are for sale on his website, (which also includes a blog by April), but April and Scott were at first hesitant to profit from their son’s work. Eventually they decided to split the proceeds from Ocean’s paintings to benefit Beyond Type 1, the JDRF and to one day soon get a Diabetic Alert Dog (DAD) for Ocean.
“We thought, if this is a way that we can spread awareness, it wouldn’t feel like we were just selling it for us,” April said. “We would be selling it for awareness, and honor him—to honor our son.”
