The article below was published in the Register & Bee and posted online here on Sunday, April 13, 2014
By SUSAN ELZEY
Special to the Register & Bee
Elzey is a freelance writer with the Register & Bee. She can be reached at firstname.lastname@example.org or (434) 79-7991.
Posted Sunday, April 13, 2014
Collin is his mother’s “angel baby.” His sweetness and big blue eyes melted her heart the minute she saw him.
Born November 2010, Collin is the third of the five children of Ryan and Jessica O’Connell.
The family moved to Pittsylvania County from New York three years ago for Ryan to complete a residency at Danville Regional Medical Center. He will finish soon and has accepted a position there as a hospitalist.
Jessica was formerly a cardiac ultrasonographer and is now a full-time mom to Caitlyn, 6; Connor, 4; Collin, 3; Caroline, almost 2; and Catherine, 1.
“Collin was very quiet and easygoing as a baby and young toddler. He was our earliest crawler and walker and always had a big smile on his face,” Jessica said. “His first word was ‘Mama,’ which filled my heart completely as his elder two siblings had said ‘Dada’ first.”
At the age of 2, however, his parents started to think his speech was a little delayed because he could only speak a few words, but they were told having two older siblings who spoke for him and recurrent ear infections could be to blame. They hoped when he had tubes put in his ears that his speech would take off.
“Unfortunately, that never happened. What did happen was that he started to become aggressive toward his siblings, pulling their hair or biting for no apparent reason. His joy of playing ring-around-the-rosey with his brother and sister was replaced with him wanting to play alone, and that usually involved stacking blocks,” Jessica said.
His parents thought it might just be the “terrible twos,” but soon he began suffering from insomnia and couldn’t tolerate being in the car or shopping. He also started spinning a lot and would stare, smiling, at the ceiling fans.
“Where had my sweet, quiet, gentle baby gone?” Jessica said. “I knew in my heart something was not right.”
One night after lying in bed, worrying about Collin, she got up to search the Internet with descriptions of his new, odd behaviors.
She found an answer to her questions. Autism.
“I woke my husband up, crying, and told him what I had read,” she said.
The next day he spoke to a physician they knew back home in Utica, N.Y. His son was autistic as well and he had founded The Kelberman Center, which provides many programs and services for children and adults with Autism Spectrum Disorder.
He was able to get an appointment for them to have Collin evaluated the following week.
On July 8, 2013, Collin received his formal diagnosis of autism.
“I knew in my heart before speaking with the neuropsychologist that he was autistic, but that did little to soften the blow when it was confirmed,” Jessica said.
Returning home, his parents enrolled Collin at Building Blocks Center for Children with Autism, a division of the Center for Pediatric Therapies on Deer Run Road.
He started receiving applied behavior analysis therapy, along with speech and occupational therapy. In the beginning he went a few days a week for half-day sessions, but after his parents met with Pittsylvania County Schools, he began receiving therapy 30 hours per week.
“Building Blocks has become a huge part of our lives. They have been so kind and encouraging as we trek through uncharted waters with our Collin,” Jessica said. “We feel so lucky and blessed that God has put these people and this school in our lives.”
Collin also receives what Ryan calls “biomedical interventions.”
“Collin is on a gluten/casein/soy-free diet and is taking multiple supplements, probiotics and B12 injections prescribed by his DAN [defeat autism now] doctor. These other modalities have been essential in our experience to Collin’s overall improvement these past eight months,” he explained.
The couple said that since Collin has been at Building Blocks, his eye contact has improved, he is responding to his name, and he is attempting to communicate more through sign language and some words.
While playing on a swing with a staff member recently, he added the word “go” to the phrase “ready, set, go” and he ran over to his dad to both give and receive hugs and kisses.
“He’s ‘present’ now,” said Ryan. “He puts his hands on his belt for you to buckle it for him, he comes to you and he recognizes you.”
He said their family life is not much different with Collin at home than when he isn’t home.
“The kids play together, and he is beginning to play with toys as they are supposed to be played with, not like he used to just line blocks up or stack them up,” he said.
The other children seem to take Collin’s differences in stride, staying on high alert for gluten and even pulls his siblings’ hair back, his parents said.
One of the hardest parts in the past was when he would cry and being non-verbal, would not be able to express what his needs were.
“He would pull our hair and cry. He didn’t want us to console him, and we were not sure what to do,” Ryan said. “But now he will kiss and hug if he is in the mood, and he comprehends what you want him to do. It’s now become apparent that he’s quite intelligent.”
Strong marriage and family
Jessica said since she and her husband live far away from their families, they have only each other.
“Despite all of the sleepless nights with Collin, the time and energy required to maintain his special diet and medications, and the difficulty he has at social events, which has led us to a decrease in our social activities, our marriage and family have remained strong.,” she said. “We need each other to get through this and we need each other to help our Collin.
“Through all of this my husband has been the rock of our family. Every day I ask him to promise me that Collin is going to be OK and every day with confidence he responds, ‘Yes, Collin is going to be OK.’”
Collin will return to the neuropsychologist at 5, and the couple remains hopeful that he will continue to improve.
“He has had marked improvement socially in eight months,” Ryan said. “Our big goal here at Building Blocks is to get him to interact. If we can get him to communicate, he can learn to add and subtract.”
Jessica said that having a child with a disability has been a trying experience. She finds it difficult to talk about it without crying.
“Most mothers hear their 3-year-old say ‘Mama’ many times a day. That is unfortunately not true in Collin’s case,” she said. “But a few times a month I hear him call for me and his little voice fills my heart. I have learned to hold tight to those moments to help get through the hard times. Although I do not know why this had to happen to my beautiful angel baby, I believe there was a reason and that God has big plans for my boy. I just need to have faith even when it’s hard to.”
What is autism?
Autism is a complex neurobiological disorder that inhibits a person’s ability to communicate and develop social relationships and is often accompanied by behavioral challenges.
Autism Spectrum Disorders are diagnosed in one in 68 children and one in 42 boys in the U.S. The Centers for Disease Control and Prevention have called autism a national public health crisis whose cause and cure remain unknown.
About the Dan River Autism Awareness 5K
The third annual Dan River Autism Awareness 5K is a run/walk event April 26, 2014. The goal is to increase awareness about autism; to show support for individuals with autism and their families; and to raise funds for The Autism Education Fund.
The event is held on the Riverwalk Trail with participants traveling from Henry County, Halifax County, Greensboro, Roanoke and beyond.
To support to Collin’s team, join Team Collbear atwww.danriverautism5k.eventbrite.com.