For two-year-old Ila Maes, a regular week includes one-on-one visits with an audio therapist, in-home lessons in American Sign Language, group speech therapy and socialization with other kids her age, and she will soon add applied behavior analysis therapy to her already busy routine.
Ila is deaf and autistic, and since day one, her parents have been her No. 1 advocates, working tirelessly to provide her with all the resources and tools needed to thrive.
Born with asymptomatic congenital cytomegalovirus, Ila had progressive hearing loss, which resulted in profound deafness in both ears before her first birthday. By the time Ila’s second birthday came around, she was also diagnosed with provisional autism spectrum disorder.
“When we found out Ila was deaf, we immediately started researching as much as we could to learn about our options,” said Ila’s mother, Ashley Maes. “To hear that she was autistic, as well, was difficult to hear, but it confirmed a lot of the signs that we had been observing ourselves.”
Ila’s parents will be among the many community members to attend the second annual Scarlett’s Park Conference at Fresno State from 2 to 7:30 pm., Friday, Sept. 27, and from 9 a.m. to 6 p.m., Saturday, Sept. 28 at the Satellite Student Union.
The free, public conference will focus on treatment methods and resources for deaf and hard of hearing children on the autism spectrum disorder. Topics include diagnosis and communication pathways as well as evidence-based treatment methods, and how to best support children who are deaf and hard of hearing and have autism.
Resources for families, educators, practitioners, professionals in the field and the general public will also be provided.
According to the Gallaudet Research Institute, about 40% of children identified with hearing loss also have additional disabilities. The prevalence of autism spectrum disorder among children who are deaf or have hearing loss is estimated to be 1 in 59.
“Children who are both deaf and hard of hearing and autistic are a unique group,” said Dr. Paul Ogden, founder of The Silent Garden Program, which Scarlett’s Park is housed in. “Educators and professionals work differently with these students than students who are only deaf or hard of hearing or only have autism. It is important for us to recognize this group and provide a space to discuss the many ways in which these students can best receive education, services and support.”
The conference will feature renowned experts and speakers on the subject, including:
- Jeffrey Bravin, executive director of the American School for the Deaf in Hartford, Connecticut
- Rosangela Jaech, co-founder of Deaf Autism America, and a deaf mother of two deaf sons
- Holly Miller, a nationally-certified school psychologist, specializing in deaf and hard of hearing children with behavioral challenges, based out of Connecticut
- Amy Szarkowski, clinical director for the Children’s Center for Communication/Beverly School for the Deaf in Beverly, Massachusetts
- Christen Szymanski, clinical psychologist at Kendall Demonstration Elementary School of the Laurent Clerc National Deaf Education Center in Washington, D.C.
- Karen Wilson, director of the Positive Attitudes Concerning Education and Socialization Residential Treatment Program in Hartford
A team of sign language interpreters will be available.
The lecture is part of an endowment by The Silent Garden, a program within the Department of Communicative Sciences and Deaf Studies at Fresno State that fosters opportunity, understanding and awareness for the deaf and hard of hearing community.
In 2015, an anonymous $1 million gift helped develop Scarlett’s Park within The Silent Garden. Scarlett’s Park is the only program in California designed for families with deaf or hard of hearing children who have other special needs. The gift makes it possible for the conference to be free for all pre-registered participants.
The conference is co-sponsored by Fresno State, the College of Health and Human Services, the Kremen School of Education and Human Development, the Department of Communicative Sciences and Deaf Studies and Wavio.
Through this conference, Ila’s parents hope to gain further education and insight.
“We want to understand how our daughter experiences the world and how we, as parents, can better communicate with her.”