Blessings of Cody

The following was written by my daughter, Katelyn Lancaster Boulton, for one of her college writing courses:

BLESSINGS OF CODY

Raising a child with disabilities is not only a challenge but also a blessing.

The Lancaster family, from St. George, Utah, explained the joys of living with a disabled son, grandson, brother and friend. Each member of the family has been changed because of the awareness of disabilities they have been exposed to.

Cody Lancaster was born with CHARGE Syndrome. According to the CHARGE Syndrome Foundation, the condition refers to individuals which have multiple birth defects, including coloboma (an eye abnormality), choanal atresia (blockage of the nasal passage), unusual ears or other problems. While many cases of CHARGE have been linked to a mutation of the CHD7 gene, the syndrome is primarily a diagnosis based on physical features.

Brother Chase Lancaster explained the syndrome in simpler terms. “I don’t tell people he has CHARGE Syndrome,” he said. “I tell people he’s blind and autistic because people don’t know what CHARGE Syndrome is.”

 Cody does not have heart problems, nor is he deaf, but he was born with no eyes and because he has choanal atresia, doctors didn’t expect him to live for more than two days. He is now 31 years old.

Cody went to special education classes in public schools until he was 7.  “It was then that his dad and I had him evaluated at the Oregon School for the Blind in Salem, one hour north of Eugene,” mother DeeAnn Lancaster said. “After an extensive three week evaluation, we were so impressed with the school that we made the decision to have Cody schooled there. We would drive Cody approximately 60 miles to school on Mondays, then pick him up and bring him home on Fridays. He spent four nights a week at the dorms on campus and three nights a week at home.”

There were several dorms on campus, staffed with a number of employees. Each dorm had a leader, often referred to as a dorm mother. The school campus also had an infirmary staffed with nurses, a cafeteria, bowling alley, roller rink, track, playground and swimming pool. Cody loved his time spent at Oregon School for the Blind and has fond memories of his friends and the time he spent there.

Cody needed several surgeries as a baby. He has a shunt because he was born with hydrocephalus, which is water on the brain. A shunt provides a passage and allows fluid to move off the brain. Cody’s shunt moves fluid from his brain to his chest cavity, where it’s absorbed. He had a cleft lip when he was born that was repaired by a plastic surgeon. He had surgery three times to unblock his nasal passage. “Each time failed, so his dad and I decided against trying it again,” DeeAnn said. “Cody has lived his life not breathing through his nose. We think it is for this reason that Cody has never sneezed.”

When Cody was around 8 years old, he had his first seizure. “That was a scary time for us because he wouldn’t come out of it,” DeeAnn said. “We had to take him to the emergency room so they could inject a drug to make the seizing stop.”

Doctors decided Cody needed to be on a seizure medication, so they gave him Dilantin, a drug that remains in the body anywhere from weeks to months after it’s initially introduced. After about three weeks, Cody broke out in a rash and became really sick.  “It turned out he was allergic to the Dilantin, but he had three weeks’ worth of the drug in his system, so he was hospitalized until it wore off,” DeeAnn said. “We did not think he would live through the illness. He was that sick.”

DeeAnn said the shunt the neurologist placed in Cody’s skull miraculously lasted until he was around 14 years old. It was then that Cody became extremely ill and had to have a new shunt. He spent over three weeks in the hospital. Once again, doctors didn’t expect him to live. Because of staff infections and other problems, Cody had to have his shunt replaced two more times, for a total of three surgeries in a six month period.

Father Don Lancaster said watching Cody go through multiple surgeries is what influenced him to become an EMT. “You never know what’s going to happen,” he said. “You have to always be prepared.”

DeeAnn echoed her husband’s words, describing the moment when she knew Cody had to be assessed for autism. “After watching an episode about autism on ‘The Sally Jessy Raphael Show’…I decided Cody needed to be evaluated for autism,” DeeAnn said. “He had several of the characteristics that were discussed on the television program. He was able to be evaluated while at OSB and was diagnosed with moderate autism.”

Although Cody talks and doesn’t mind being touched—like most autistic people do—he hates having his routine changed, much like the movie ‘Rain Man,’ whose main character suffers from autism and has to do certain things at certain times and places. 

Cody too has a routine he follows. He goes bowling on Mondays, eats a Twinkie for lunch on Tuesdays, watches ‘Survivor’ and ‘Criminal Minds’ on Wednesdays, walks the track on Thursdays, watches a movie on Fridays, watches cartoons on Saturdays, and attends church on Sundays. Although autism has its disadvantages, it also makes Cody who he is. He can be quite a character.

Chase said if anyone is watching television or listening to the radio with Cody, they can’t change the channel or the music because it breaks Cody’s routine. Chase laughed as he talked about the number of times he has watched a show he didn’t want to or listened to unpleasant music in order to keep Cody happy.

DeeAnn said in the case that his routine must be changed, Cody has to know well in advance. “Heaven forbid Obama ever has to speak,” DeeAnn said with laughter, explaining that during breaking news events, such as presidential speeches, Cody throws a fit, not able to understand there are some things that just can’t be controlled.

Brother Casey Lancaster said having a disabled brother has been beneficial because you “learn to raise a kid basically.” Casey explained that Cody won’t use the bathroom without being told, and the family has learned to read Cody’s signals and needs from the non-verbal cues he gives. These cues could be anything from something simple, like Cody fidgeting in his seat, or something more complex, like Cody becoming sad or angry.

Sister-in-law Talitha Lancaster married into the family July 2012 and has adopted Cody as her brother. “I have learned in the period of time of getting to know Cody that he has his routine in things just like anyone else,” she said. “Now that I know Cody, I can’t even picture him not being around. I’m glad to have met him, and he’s a part of my family now.”

Cody has developed a close relationship with his father, and the two of them often joke with each other. Cody imitates his dad in every way, mostly by repeating things his dad says or the way he says them. His father, from South Carolina, has a strong accent, and Cody finds entertainment by pretending he’s also from the South.

Cody learned braille and mobility (how to walk with a cane) while at the school for the blind.

When the Lancaster family moved to Utah, Cody was once again placed in the public school special education program and involved in inclusion. Although he missed being with his friends and teachers at Oregon School for the Blind, he thrived being around “normal” peers. Some of his best friends were made through the peer tutor program at Pine View High School.  

Upon leaving the public education system, Cody started attending TURN Community Services, a program providing services for people with disabilities. Much like school or a job, Cody is at TURN weekdays from 8 a.m. to 2 p.m. The program provides an entertaining and educational environment for disabled individuals.

DeeAnn said the employees at the program have been exceptional. DeeAnn kept a note from a previous employee, Katie Johnson, who is no longer with TURN. Katie wrote: “It’s my last day today, and I wanted to do something special for Cody because he’s my absolute favorite client. There were a lot of days when Cody was my reason for coming to work, and I’m going to miss him a lot, so I made this mix CD for him to keep of songs that remind me of him or that he really likes.”

Cody loves listening to 95.9 The Hawk, 1980s music, watching home videos, eating Kit Kat candy bars and macaroni and cheese, watching the movie ‘I Now Pronounce You Chuck and Larry’, and playing Atari video games at his grandma’s house. Cody does not like ice cream, popsicles, lollipops, gum or cold fruit.

DeeAnn said Cody used to eat cold foods when he was young but after his first dental surgery, his teeth became sensitive.

Cody has not only influenced his family, but he also has influenced everyone who has ever known him.

Cody is a miracle before anyone’s eyes. He has used his disability as a way to make others aware of the importance of life—and the greater meaning therein.

Brother Casey Lancaster said: “It wouldn’t be a life without Cody in it. He’s always been there. I wouldn’t know what it’s like without him.”

Grandmother Marilyn Crawford-Bauer also explained. “He makes us think about what’s important in life and what’s special,” she said. “Things could be so much worse.”

Left to Right- Chase, Talitha, Asher, Casey, Matthew, Katelyn, DeeAnn, Walker, Don ,Cody

Photograph by M. Felt Photography