Davina Drakeley-Lever had been a pediatric nurse for 15 years, but when her son Alwyn started showing signs of autism, she was the last to realize it.
"At 18 months, Alwyn was meeting all of his gross motor skills, crawling and walking on time, but he was not talking," Drakeley-Lever recalls. "I was in denial, I guess, thinking, 'oh, that's just him, and he'll get it eventually.' "
So she enrolled Alwyn in speech therapy and early intervention through BabyNet, a South Carolina early intervention program for infants and toddlers with developmental delays.
"Things started to improve very slowly with his first word being 'bee.' But he still didn't respond when his name was called, and his speech was babble," Drakeley-Lever said. Looking back, she also began to realize that Alwyn's behavior while playing with his toys was a bit unusual.
Shortly before his third birthday, Alwyn was diagnosed with severe autism.
"I was shocked. It was very scary for me to hear that. If the doctors had told me my child needed heart surgery or had diabetes, I could have understood that. But autism is so abstract. Some kids don't like loud noise; some are sensitive to touch; or they lack communication skills, and children can be all over that spectrum. This all was hard for me to understand," she said.
Drakeley-Lever sought support and found it at Camp Puzzlepalooza in Aiken, a church-sponsored camp for children and families with autism spectrum disorders. Over the past few years, she has met many parents like her who have questions about the disorder and treatments; some have concerns about their child's progress; and others have had trouble coming to terms with the diagnosis, she said.
As a nurse, she realized that she was in a unique position to bring those parents together at MCGHealth Children's Medical Center – a place where they could get their questions answered, receive information and share their experiences. She took her idea to Dr. Caroline DaBittisto, who specializes in developmental pediatrics, and together they formed the Autism Spectrum Disorder Support and Resource Group, called the A-Team for short.
The A-Team meets the first Tuesday of each month from 6 to 7 p.m. in the Family Resource Library at MCGHealth Children's Medical Center.
"The resources and information we share at monthly meetings is evidence-based," said Dr. DiBattisto. "There are many new treatments out there, and many times parents want to know whether something is right for their child. We want to give families educational information about what does work or what may be helpful for their family so they can make informed decisions. We want to shed light on a broad diagnosis," she said.
Alwyn, who turned 6 in February, receives three hours of adaptive behavior therapy daily as well as speech and occupational therapy at school. His home therapies include one hour each of speech, occupational therapy and therapeutic horseback riding each week.
"Having a child on the autism spectrum is very stressful as a parent," Drakeley-Lever said. "But my husband and I have learned to appreciate the baby steps Alwyn makes as giant leaps forward. We hope the families who participate in the A-Team will be able to say that, too."
MCG Health, Inc. (d/b/a MCGHealth) is a not-for-profit corporation operating the MCGHealth Medical Center, MCGHealth Children’s Medical Center, MCGHealth Cancer Center, Georgia Radiation Therapy Center, and related outpatient facilities and services throughout the state. For more information, please visit mcghealth.org.
Davina Drakeley-Lever was inspired by her son Alwyn, 6, who has autism, to form the Autism Support Group (A-Team) at MCGHealth Children's Medical Center. The A-Team will hold a special celebration in honor of children with autism spectrum disorders on April 5 in the Family Resource Library.
Editorial Note: April is national Autism Awareness Month. The Autism Support Group (A-Team) at MCGHealth Children's Medical Center will hold a special Autism Awareness Celebration on April 5 from 6 to 7:30 p.m. in the Family Resource Library on the first floor of the hospital. The event is open to children, families and caregivers affected by autism spectrum disorders. If you plan to attend, please RSVP to Davina Drakeley-Lever at firstname.lastname@example.org by March 29. For more information about support group meetings, visit mcghealth.org.