Granby couple, with help, embraces child with special needs
December 7, 2007
Baby Owen Nixon lies on the living room rug on a favorite green dish towel-turned blanket.
“He’s going to be like Linus with that towel,” his mother Trisha says as she giggles admiringly at her newborn.
The blanket is familiar and soothing to the baby, who cuddles and coos, happy to hear his mother’s voice.
When his mom and dad talk about him, words are easy.
The 9-month-old has an infatuation with mom’s hair, they say. He’s “full of life”; he responds to bird sounds, likes to repeat noises his parents make, and loves the sound of water. He’s also broad-shouldered like grandpa.
“I love being a parent,” Trisha says gushingly.
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Not without a challenge
“It never really hits me that he’ll have to learn braille, or have a dog to help him get around when he’s older, or that he’ll never be able to drive,” Trisha says.
“And then one day, it comes out of the blue, and you just break down and cry. You always think about the positive things, until you step back into reality, and realize wow, all these thing are real. You can’t always pretend things are fine, because everything is not fine. It feels like the hardest job in the world.”
Owen has hypo-petuitarism, the result of an underdeveloped pituitary gland, the master control gland in the body that controls hormones, growth, metabolism, and testosterone.
When Owen was born, it was immediately discovered that his body temperature and blood-sugar levels were not regulating properly. Following circumcision, the infant’s temperature dropped considerably at a time when, normally, it should have raised as a response to stress.
From critical care at Yampa Valley Medical Center in Steamboat Springs, the newborn was flown to Denver’s Presbyterian/St. Luke’s Hospital, where after a child MRI, an endocrinologist was able to provide Trisha and Jeremy answers they craved.
Their boy, born 6 pounds, 8 ounces, 19 inches long, would have trouble seeing, they were told. His impaired vision is caused by a disconnect from the brain to the optic nerves, called septo optic displasia.
Instead of Owen having more than 1 million nerve fiber connections from each eye to the brain, he has far fewer.
And because he was born with a pituitary gland smaller than normal, Owen must be given four medications daily to regulate the glands functions of sugars and salts, body and mass, adrenaline and the thyroid, the young parents learned.
He’ll require such supplements for the rest of his life.
The Nixons were in the hospital three weeks from the time Owen was born, as the infant underwent a barrage of tests. During the first few days, “he was hooked up to so many things, it was crazy,” Trisha said, describing the pain she felt seeing her baby in a bubble, tubes, wires extending from his tiny body.
In a journal, she recorded every word the doctors and nurses shared, and has since stashed her and her child’s hospital bracelets in Owen’s baby book, along with pictures drawn by a hospital staff member who grew to know the Hot Sulphur Springs family, along with various cards and photos.
“When you walk into a hospital and they know you by your first name, that’s not good,” Jeremy said.
At first, Trisha blamed herself but learned that it was nothing she did or didn’t do during pregnancy, just a natural occurrence that took place in the womb.
“Who knew the pituitary gland did so much,” she said.
The day the couple returned home after nearly a month of their first child constantly being whisked away for treatment, Trisha said all she wanted to do was nurture and feed him, cuddle him, hold him, and examine his hands, fingers and toes like any new parents would, they admitted they felt overwhelmed.
Here in their arms was a child, although perfectly normal to them, they said, in need of special care and attention.
“We believe God gave us this child because he knew we could handle it,” Trisha said.
Referred by Peak Pediatrics in Winter Park, the Nixons found a lifeline of care that has become invaluable to them.
Horizons Specialized Services contacted the Nixons, and from then on, they have been receiving free weekly visits from occupational and physical therapists through an Early Intervention Program, dedicated to providing professional developmental care to young children at risk of delays or disabilities.
Also, through Horizons’ Family Support Program, the Nixons are provided an allowance, linking them to resources such as “touchy-feely” toys designed for visually impaired children.
Horizons also connected the Nixons to a Craig parent whose 3-year-old son has the same needs as Owen. Now, the Nixons said, they have access to knowledge, guidance, and support.
“It intrigues us now to see other children with disabilities,” she said. “It was something I paid attention to before … You cared, and it hit you in the heart, but you never really realized what those parents really go through,” she said.
Horizons’ programs are supported by the Division for Developmental Disabilities through the Colorado Department of Human Services, but recent cuts in funding have forced Horizons to “spread funding out among all the families,” said Director Susan Mizen.
Horizon provides services to Grand, Jackson, Moffat, Rio Blanco and Routt counties.
Besides support from the state, programs rely heavily on grant funding and other sources, Mizen said. Its largest annual fundraiser is the December Points of Light campaign, in which donations will help to support as many as 40 families in Jackson and Grand counties.
Horizons sees to it that donations from Grand County residents directly benefit Grand County families.
Service Coordinator for Grand and Jackson counties Roberta Hovermale said the first three years is a “critical window for a child’s development” and early intervention is key.
Horizons provides free screenings for parents who have concerns about a child’s degree of learning.
“Each family has different challenges,” Hovermale said. “No matter what it is, we’re there for them.
She would know. Horizons was there for her after her twins were born, she said. “I’m the biggest fan of Horizons; that’s why I work for them. I believe in what they do.”
Points of light
This year, the campaign has new meaning in Grand County, as the Nixon family, who before Owen, had not even heard of Horizons.
Now, “points of light” are what he strains to see.
His mother, who has started to learn braille herself, has made drawings of colorful animals and fish, which now hang above the infant’s crib. A black light shines toward the artwork, making the shapes more visible to her child’s eyes.
“He has the most beautiful blue eyes I’ve ever seen,” she said.
In a makeshift cardboard shelter in his room, Owen is able to concentrate more on shapes and movements of toys, less the overhead light in his room, something else Trisha has discovered by experiment.
A box of light, much like a light table for film slides, sits on the Nixons’ kitchen table. It is Owen’s latest visual learning toy, acquired from the American Printing House for the Blind, through Horizons.
She would love to give her son the gift of color and sight, she said.
Maybe in the future, when optic nerve transplant technology has had the chance to develop.
“Only if he would want it. It would be his decision.”
– Tonya Bina can be reached at 887-3334 ext. 19603 or e-mail firstname.lastname@example.org.