Taking care of a child who has been diagnosed with autism can mean attending therapy sessions and doctors’ appointments at facilities spread out across state; it can also mean spending months on waiting lists for appointments with about 60 other families.
Two women living in the Williamsburg area, both mothers to 4-year-old autistic sons, are setting out to make a change in the lives of people caring for autistic children through One Child Center for Autism. Julie Cullifer and Jennifer Jenkins have spent about two years taking their children to various doctors’ appointments and therapy sessions — some in Hampton, some in Chesapeake — and they are looking to make things easier.
One Child was officially incorporated in July, but Cullifer and Jenkins have some work ahead of them before their center can fully come to fruition. The pair is working to create a single location for autistic children and their families to attend therapy and counseling sessions. Their ultimate goal is to offer Applied Behavior Analysis, speech therapy — including social skills groups — and counseling.
“There’s just not enough providers for the demand,” Cullifer said.
When a child is diagnosed with autism, the parents are exposed to a new medical world, one that requires them to be stewards of their own child’s treatment. Jenkins said a child’s pediatrician will typically suggest seeing a developmental pediatrician if they believe the child may have autism. If diagnosed, the developmental pediatrician may recommend four different therapies.
Basically, families are handed a list of things to do, Jenkins said, and “that idea is very daunting to a family.”
People don’t know where to begin and may have never heard of the services, Jenkins said. Once a therapy provider is located, it could be hours away. Jenkins travels more than an hour from her Williamsburg home to Chesapeake twice weekly. She said she is unable to work because she spends four hours at each Chesapeake service. Also, she has two other children.
Jenkins has to coordinate taking her son to therapy while also maintaining her other children’s schedules without compromising their schooling or extracurricular activities. When the schools her children attend have half days, she has to coordinate getting them off the school bus while still taking her son to therapy; if she does not attend a session then one of the many families on the waiting list who are “itching to take [her] spot.”
Since the therapies are usually offered at different facilities, Jenkins said she carries reports from one doctor to the next because each needs to see what the other reported.
Cullifer and Jenkins want to offer all therapies an autistic child usually needs in a one-stop shop so parents don’t have to travel and cart reports across the Peninsula.
On top of providing these services, Cullifer and Jenkins want to be able to provide services to families who cannot afford them. The two women said services for autistic children can range from $50 to $125 per hour with some services requiring up to 20 hours per week — and few insurances cover the costs. When all is said and done, a parent could pay $60,000 per year for just one of several therapies and services.
The pair is working toward non-profit status to be able to offer services to those who need them but can’t afford the cost.
“We understand the financial burden that comes along with this,” Cullifer said.
Despite the coordination having a child with autism requires, Cullifer said, “It’s not a huge tragedy that has ruined your life.”
Autistic children have amazing abilities and those should be celebrated.
As they work to gain the resources and experts needed to fully launch One Child, Cullifer and Jenkins are already offering free social classes called Skill Builders: A Lego Social Skills Group. To launch the classes, Cullifer and Jenkins collected donations totaling about $3,000. The classes are being offered at Beyond Bricks in New Town; the pair was glad the venue opened because they had been interested in offering Lego classes for a while and needed a venue.
“It’s the little things we’re working on,” Cullifer explained. The classes focus on taking turns, asking to use something and waiting for it to be given rather than simply taking it. The group also works on talking, working together, reading body language and starting conversation. “Those are things … that can be very difficult for them to do.”
Jenkins explained autistic children tend to do parallel play– where they play in the same area, with the same purpose, but aren’t interacting. The purpose of the Lego group is to get children to play together.
Offering the classes at Beyond Bricks afforded the opportunity for siblings of autistic children to play with Legos as well.
“We both have other children and, from our experience, your other children are always being drug along and have to sit in a waiting room,” Jenkins said. Cullifer added, “What makes One Child unique from all the other organizations … is we want to help the child, but we also want to help the family.”
Additionally, the pair hopes local businesses will become involved with their center to gain an understanding of children with autism and that the disorder presents itself differently in each child.
“If you’ve met one child with autism, you’ve met one child with autism,” Cullifer said.
Jenkins said her son was considered to be non-verbal but is extremely social. Now, through therapy, Jenkins’ son is considered to be partially verbal. He is also a “sensory seeker” meaning he puts things in his mouth “because it grounds him and he can focus more.”
Cullifer’s son has been verbal since he was 2 years old, but he’s content spending all day by himself. As for his senses, he can run into a wall and not feel it. Cullifer’s son writes so lightly you can’t read what he wrote, while Jenkins’ son writes so hard he breaks the crayons he uses.
Cullifer said the pair joke that if her son and Jenkins’ son were put together, they would be one fully functioning child.
“I think that’s one of the cool things about our kids. They’re opposites,” Cullifer said.
While One Child works to get up and running, Cullifer and Jenkins are maintaining One Child’s website. Information about their planned services is provided, as is a sign up for services and the Lego skill builders class.