Perception is Reality

Three-year-old Charlie Dolan closely examines the object in his hand.

Turning and twisting it. End over end. This way and that.

“Hmm…”

He runs his tiny fingers over the wood surface and long handle.

“Hmm…” he hums again. “What is it?”

He pouts his lip in thought.

“Red,” he says.

He pulls it closer to his face for inspection.

While most people can see things far away, Charlie needs to get up close and personal with his surroundings. What we can see at 250 feet, he can only see at 20.

You can see the wheels turning behind his blue-rimmed glasses. He does one final investigation of the piece.

“Hammer,” he concludes proudly, “big red hammer!”

He smiles wide and hammers away at the brightly colored pegs.

After a couple minutes, Charlie’s ready for his next adventure.

He flies down the hallway. A trail of giggles follow.

“Like a light switch,” Charlie’s father John says. “He’s either awake and 100 percent, or he’s asleep and he’s off.”

Pedal to the metal. That’s Charlie today.

Aside from his thick-rimmed glasses and tendency to pull objects close his face, Charlie functions just like any other kid his age. Charlie doesn’t know it and many people wouldn’t guess it, but Charlie is legally blind from a rare eye condition known as Peters Anomaly.

Peters Anomaly, essentially, is when the iris doesn’t develop the way it should. It could be caused by issues with the lens, iris or cornea. It’s a broad diagnosis that can run a gamut of possibilities and when John and Kristin received the news, Charlie was just 72 hours old. The high of being new parents wore off and devastation hit.

While most new parents are busy changing diapers and keeping their baby fed and well rested, the Dolans were fearful their baby would be blind for the rest of his life.

“We were still figuring out how to be parents,” John recalls.

The next few months were a whirlwind. Their dreams of settling into parenthood and enjoying their newborn turned into emergency cornea transplants, glaucoma surgery and 48 rounds of medication. It was more worry than any new family should have to endure.

There was no down time. No time to question things. Everything was structured around doing what Charlie needed.

“It was a blur of if A then B, and if B then C,” John recalls. “What do we do next? Doesn’t matter. Let’s just do it.”

It wasn’t until Charlie was about seven months old that John and Kristin could finally breathe a little easier. The surgeries were over and it was time for next steps – learning Charlie’s developmental delays and getting him the therapy he needed.

Charlie plops down in his dad’s lap and latches onto his thumb – ready to sing – one of the many things he does best.

“Daddy finger, where are you? Here I am. How do you do?” he chimes.

Charlie rattles through each finger – mommy, brother, sister and baby – hardly taking a breath. Then, like a flipped switch, he’s back on the move.

Moving is something the Dolans are used to. With John in the military, they’ve called many places home. The military empathized that Charlie’s condition required specialized attention, and at seven months old, the Dolans relocated from Honolulu, Hawaii to Scott Air Force Base in St. Clair County, Illinois. It was the best place for Charlie that still aligned with John’s job. Here, Charlie could be seen by some of the nation’s top children’s hospitals and receive therapeutic services at organizations like the Delta Gamma Center for Children with Visual Impairments.

“Our life preserver,” John calls them.

United Way-supported Delta Gamma Center quickly welcomed the Dolans, accessed Charlie’s needs and connected him to a vision therapist. As for John and Kristin, Delta Gamma provided the new parents with support, assurance and education on Charlie’s condition.

Having a very young child with special needs can be frightening. John and Kristin needed someone they could talk to about concerns. Delta Gamma understood that collaboration with other families was essential to meaningful services, and connected John and Kristin to a community of parents of kids with visual impairments.

Suddenly, the Dolans didn’t feel so alone. They met people who had experienced it all, people that could answer their questions: How did your kids get through it? How did they act when they were 4 years old? What can they see? Can they go to school and do things themselves?

For the first time since Charlie’s diagnosis, John and Kristin felt informed and optimistic.

“The biggest gift that Delta Gamma gave us was hope,” John said.

They saw 3-year-olds, 7-year-olds and teenagers living and doing everyday things: going to school, eating on their own, playing with other kids and swinging at the park.

“We saw we weren’t going through it alone,” John recalls. “It’s not an insurmountable obstacle; it’s just a twist in the story of our lives.”

Charlie hustles to the front door, already giggling.

He knows what time it is.

“He loves playing outside,” John says. “We have to be careful when we say the P-A-R-K word.”

Shoes, jacket, sunglasses – check, check, check.

Charlie’s just about to crest the doorway when a thought stops him. Fiona. He turns on his heels and runs to check on his 8-month-old sister. “Fia,” he calls her.

Always helping. You can’t help but smile. John and Kristin used to think Charlie would be the one who would always need help, but here he is helping them – just 3 years old.

“It’s astounding.”

Charlie grabs a small stuffed toy from his own toy box and runs to plant a kiss on Fia’s head.

Now he’s ready.

Charlie goes for the bubbles first – running full-throttle around the yard as the wind carries them up and away.

He spies a flash of yellow out of the corner of his eye and throws on the breaks to take a closer look. His little fingers grasp the bright flower that looks out place in the sea of green beneath his feet. He brings it close to his eyes for inspection – a dandelion.

Because Charlie’s so young, Delta Gamma focuses on play-based therapy, encouraging him to explore his surroundings. Since his limitation is sight-related, Charlie relies heavily on touch.

Size and texture are big components, so while Charlie may not be able to see an object as easily as other people, he can determine what it is by touch.

His therapy also focuses on mobility – walking, stepping, sitting, standing and climbing. This kind of therapy helps keep other developmental delays that come with vision issues at bay.

If he didn’t have access to this kind of therapy, Charlie may not know how or when to do certain everyday actions like sit up, jump, step or climb, and could grow up to be apprehensive.

If you couldn’t tell, Charlie’s fear level is zero.

He runs around, explores and acts like any other kid his age. And as far as Charlie can tell, he is just like any other kid.

“He has no idea that anything is different,” John says.

Every parent wants the best for their children. It’s hard to know how Charlie’s condition will progress. Peters Anomaly is rare and every case is different, but John and Kristin are cautiously optimistic that his sight will remain consistent if not improve with age.

Their hope: for Charlie’s disability to not determine the way he’s perceived.

“If he wants to be a cook, great,” John says. “If he wants to be an author, a painter, a mechanic, I don’t care as long as he gets the chance to do whatever he wants and nobody says, ‘You have vision problems. You can’t do this.’”

About The Delta Gamma Center for Children with Visual Impairments

The mission of the Delta Gamma Center for Children with Visual Impairments is to help children who are blind or visually impaired reach their full potential through family-centered, specialized services and community support. The Delta Gamma Center for Children with Visual Impairments provides educational services for children in the earliest years, prior to the start of school, with an emphasis on guidance and training for their parents.

Services offered by the Delta Gamma Center include comprehensive early intervention services to address the needs of infants and toddlers who are blind or visually impaired and their families. Services include education, orientation and mobility services, occupational therapy, physical therapy and speech therapy services for children with complex developmental challenges. The Delta Gamma Center has been a United Way funded agency since 1998.