When Hazel was five months old, her parents, Liz and Tom, visited the pediatrician—they were growing concerned after noticing that their daughter was not tracking objects or making much eye contact. After referrals and visits with specialists, Liz and Tom learned that Hazel has a visual impairment and developmental delays, as a result of a rare genetic disorder. Wanting to best support their child, the pair pursued early intervention and were connected with Perkins’ Infant-Toddler Program. With a customized learning approach, Hazel’s world opens.
The family began working with Mary Sparks, a Perkins Teacher of the Visually Impaired (TVI), whose support and expertise has made a world of difference for Hazel. “Right from the start, Mary was so helpful in trying to figure out how to best set up Hazel’s room and the toys she should be playing with,” Liz shared.
Mary also helped the family remove distractions that could be distressing to Hazel, prioritizing simplifying her environment. Sometimes, a simple change unlocks more opportunities. With Mary’s knowledge, Tom and Liz have learned more about sensory play and using specific colors to help Hazel understand what she is looking at, so now she can learn how most children learn: through play.
Mary has also been helping Hazel work on what Perkins calls self-regulation. Hazel struggles to communicate her needs, which makes her frustrated, and can lead to meltdowns. As her TVI, Mary has not only helped Hazel learn to better communicate her needs so she can avoid this frustration, but also helped her learn to recover when she experiences overwhelm.
Liz notes that Hazel has started to understand and use Mary’s lessons, recently independently calming her body while working through physical therapy.
It’s not just about sight! We’re working on her whole body at Perkins!”Liz, Hazel’s mother
At Mary’s suggestion, the family connected with Perkins’ Infant-Toddler Program. Through the family support groups and group activities for Hazel, Liz and Tom have found community and an important resource for their child.
The family support groups have offered a source for advice and discussion from peer caretakers who understand the experience of raising a child with a visual impairment, particularly important during the isolation and disconnection of the pandemic.
In addition, the guest speakers who attend the group have also offered important insights, particularly one who connected the family to a pediatric therapist that has been “life-changing” for Hazel.
Once Hazel began attending group activities at Perkins, her parents noticed an instant connection and spark during music programming. Even over Zoom, Hazel was engaged with the music and her instructor, Miss Susan.
When Perkins resumed in-person music activities in 2021, Liz noted that Hazel immediately approached and sat with Miss Susan as if they had known each other for years. Liz notes that the music programs have helped Hazel become more responsive and engaged, which impacts all aspects of her life—“it’s not just about the music: it’s so much more than that for her brain.”
Music has also been a communication breakthrough for the family—one of Hazel’s cousins, a musician, now visits weekly to teach music and bond with her, offering learning opportunities not only for Hazel, but also for her loved ones.
The family has started to explain total communication to Hazel’s extended family, which creates opportunities for deeper familial connection. In-person group at Perkins also provides Hazel with two hours a week during which she is away from her mother—a unique opportunity that would otherwise be difficult to create.
Today, at two years old, Hazel maintains her passion for music and has made significant progress. She continues to face obstacles, such as a continuing battle with sleep problems, but Perkins’ Infant-Toddler Program remains a strong support.
Recently, Hazel “popped up immediately” when she heard a song she recognized, and participated by looking at the teachers, clapping, and touching her mouth when the song said “mouth.” This level of engagement and recognition is incredibly exciting for kids like Hazel.
Additionally, the family has been working hard to help Hazel understand where she is in space, with the help of Mary’s sensory toys. With customized learning, there are endless opportunities. As Liz said, “I don’t know how to express the gratitude we have for being involved in Perkins.”