Family Seeking Answers, Support for Newborn with Disabilities turns to AzEIP

Jamie Hillman and her husband Shawn welcomed their son, Gavin, to the world in July 2014. Gavin’s birth was full of both joy and anxiety as significant health concerns were identified. He was born blind with a major brain bleed that resulted in hydrocephalus, which is when fluid builds up within the brain. Soon after, he developed adrenal insufficiency -  a rare condition where adrenal glands don’t produce enough hormones. He had to remain in the neonatal intensive care unit (NICU) for 20 days to treat the hydrocephalus, and later received cornea transplants in both eyes. The Hillman family was facing significant challenges, but luckily, they didn’t have to handle them alone.

After learning about the Arizona Early Intervention Program (AzEIP) from hospital staff, AzEIP was able to help Jamie and her family understand Gavin’s unique needs and how to support his development through everyday learning opportunities. AzEIP provides early intervention services to families with children from birth to three years old who have disabilities or developmental delays. Specialists work with these families to help foster the growth and development of young children.

Jamie knew she needed support and decided that AzEIP was the ideal resource for their family. “I could not have survived the first 3 years without AzEIP and all the guidance I received," Jaime recalls. 

After Gavin was released from the NICU, Jamie’s AzEIP service coordinator met with her and her husband Shawn at their house along with a team of therapists to create a development plan for Gavin. This plan would be the blueprint for Gavin’s developmental success.

“The Early Intervention services made such an important impact in Gavin's life and has given me so much emotional support,” said Jamie. “I am forever grateful for our NICU nurses for knowing what was best for Gavin because I had no idea where to start,” she added about the referral to AzEIP she was provided.

During the AzEIP home visits, Jamie and their Early Intervention team worked together on strategies to help the family achieve their planned goals. The goals changed as the family’s needs changed.  When Gavin was an infant, the family needed support understanding Gavin’s vision challenges and learning how to help him feel comfortable during daily routines. As Gavin became a toddler, the team helped him learn how to communicate and play with toys. 

It was a steady build-up of new skills that can seem modest at first, but every step was a win to eventually reaching the next larger goal.  

“Those goals seem so small but the truth is we had no idea what he was going to be able to do. He has accomplished way more than we ever thought. He is talking, signing, crawling, walking, and has tons of smarty-pants tricks. He is so amazing and smart and today he loved putting on a show for his teachers,” said Jamie.

Gavin had to endure seven surgeries in total, with one being a brain surgery. He eventually lost his vision at three years old, but the family continued with their early intervention plan and Gavin reached several milestones, including being able to read and write in braille. 

When turning three, Gavin’s team helped him transition from AzEIP. Jamie and the family bid farewell to their service coordinator, saying it was “bittersweet to say goodbye,” but it “opened a new chapter in Gavin’s life.” He went on to attend The Foundation For Blind Children’s Preschool.

Ten years later, Gavin is a happy boy who enjoys drumming and baseball. His zest for life and music grabs the hearts of everyone he encounters. 

“I wish I could go back and tell that scared crying Mom that everything is going to be okay…because it is. It has been a long journey of grief and being scared of the future, but Gavin has made this journey so rewarding, “said Jamie. “He is an amazing, funny, and smart little boy. He has a contagious laugh and sense of humor and never gives up when it comes to something he loves.” You can check out Gavin’s escapades on Instagram. 

Visit the AzEIP website for more information.