It is fair to say that whenever 4-year-old Derik Calloway walks into a room, his smile spreads to everyone.
And that is something to celebrate.
It was just a few years ago that his mother, Michelle Calloway, found out that her son had Angelman Syndrome, a rare genetic disorder characterized by developmental disability, sleep disturbance, jerky movements and a general happy demeanor.
“He is generally always smiling,” Calloway said. “They are like little angels. They are happy, and you hardly see them without a smile. And that smile is so contagious, he just lights people up.”
Calloway is like most mothers, she watches her 4-year-old son closely, she worries about him, and she loves him unconditionally, but she has so much more to deal with.
Calloway said that when she first found out what syndrome her son had, she was relieved.
“I was extremely overwhelmed,” she said. “But at the same time, it was a relief to put a name and definition on it.”
But with the diagnosis, came a reality. He would need 24/7 care for the rest of his life, he would most likely never talk, and he would always have balance problems.
But still that smile.
“He loves so deeply,” Calloway said.
Calloway knew her son was special from the start, mostly because he hardly ever slept. Sleep disturbance is one of the symptoms. Calloway says she is lucky if he sleeps two to four hours a night. And it is the lack of sleep that has Calloway often on edge. The communication breakdowns between her and her son can be frustrating.
Having a child with special needs in a small town can be very isolating, Calloway said.
So last month, Calloway started a campaign. She approached the Cortez City Council, The Cortez Journal and as many organizations as she could think of for help, for a support group.
“There really isn’t anything around as far as a support group for parents of children with special needs,” she said.
So after nearly two months worth of work, Calloway has partnered with the Piñon Project and started a group called Alphabet Soup for parents of children with special needs.
Maggie Tevault, parent educator and family advocate for the Piñon Project, hopes the group will fill a need.
“We called it Alphabet Soup because there are all these children that get labels such as ADHD, CP, MD or ASD,” she said.
Trish Peters, with Community Connections, estimates that about 2 percent of the local population of children have special needs.
Some you can see, and some you can’t.
“There are a lot of kiddos, that you can look at them and say that child has a disabilities, but there are a lot of other kids you can’t tell,” Tevault said.
Tevault hopes she can help parents connect with other parents.
“Maybe there is a mom who has found a good therapist or a mom that knows the ins and outs of BOCES (Board of Cooperative Education Services),” she said.
As parents, she said, they are the experts and have a lot of good advice in an informal setting.
“I know parents in the area, especially parents of children with autism, that feel a little isolated,” she said. “Some parents feel a stigma.”
Tevault says she has felt the stigma as well, as a mom of a child with ADHD and a mental health diagnosis.
“For years, I felt I did something to break my kid,” she said. “It wasn’t like you could look at my kid and see there was something wrong.”
Some parents have found resources where you can Skype with pediatric psychiatrist. This is all information we can share as a group.
Tevault is hoping she can teach other parents how to be advocates for their children.
“There are techniques of advocating for your child,” she said.
In the meantime, Calloway has been celebrating the milestones of her son, however big or small.
Over the weekend, Derik turned 4.
But the biggest milestone happened a short while before his birthday. You see, Calloway had heard that some children with Angelman Syndrome as bad as Derik’s can never speak
But that doubt was forever erased six months ago.
“He just started to say ‘mama’ six months ago,” she said. “I was on cloud nine for a week straight.”
