Melisa Matthews was an elementary school teacher when she gave birth to a son – who was a pale blonde towhead — and assumed he’d grow out of it, just like her husband did. Two-and-a-half years later, the couple had a daughter, whose irregular eye movements were identified at her two-month wellness check-up. Melisa’s daughter was referred to an ophthalmologist, who diagnosed both children with Ocular Albinism.
As a classroom teacher, Melisa didn’t have enough training in special education but knew her daughter needed early intervention if she was going to thrive in school. That’s when Melisa decided to quit her job as an instructional coach and devote herself full-time to taking care of her child’s needs.
“We had great providers for occupational and physical therapy, but they didn’t know about vision,” says Melisa, who recently joined APH ConnectCenter as the FamilyConnect Website Content Manager. “Visually Impaired Preschool Services (VIPS) was just starting in Indianapolis, which was two hours away, so we didn’t have any vision services.”
Beginning a new journey
Melisa, a mother – with the additional skills of a teacher – started the journey of trying to figure out how best to meet her child’s needs. First, Melisa tried on her own to understand her daughter’s vision needs and how low vision was impacting her daughter’s development. Lacking the expertise of a vision teacher on her EI team, Melisa “badgered” the OT and PT early intervention providers as well as staff at the League for the Blind and Disabled in Indiana. Melisa then took a job working as a developmental therapist for an early intervention program near her home. Eventually, she was hired by the Visually Impaired Preschool Services (VIPS) to provide early intervention services for very young children and their families in Indiana.
“When I was working with children from birth to three years old I saw a gap in early literacy toys and materials for children who are blind or have low vision,” she says, adding that APH offers some wonderful early intervention tools and family resources like Reach Out and Teach: Helping Your Child Who Is Visually Impaired Learn and Grow (Ferrell, 2011).
Ultimately, recognizing there weren’t enough vision teachers available to meet the needs of children in her region led Melisa to return to school. Melisa went on to earn her certification as a teacher of the visually impaired through Indiana State University so she could serve children with low vision. But the gap remained – especially for children like her daughter, who at the age of 3 years old was not considered “visually impaired enough” to get the services she needed when she transitioned to public school. Melisa also noticed that children transitioning from early intervention to preschool weren’t always getting services unless they had cognitive delays or severe visual impairments.
“When she was 3 years old, my daughter was not identified by special education as a child who needed help with her vision,” she says. “When she was 10, we struggled to get an Individualized Education Program (IEP).” This was when Melisa requested an independent educational evaluation (IEE) for her child. Melisa recalls the frustration of realizing the only assistive technology her daughter was offered were low-tech magnifiers that were not prescribed for her unique low-vision needs. And there was nothing for distance vision, screen reading, or even Bookshare for auditory literacy when her child was tired and still needed or wanted to read books.
Melisa quickly learned the importance of parent advocacy. She asked for many assessments and services she knew her daughter needed like a functional vision assessment and a learning media assessment; but wasn’t sure if it was okay to disagree with an evaluation or request other assessments or services. Because Melisa was training for her vision teacher certificate she learned she could request an FVA, an, LMA, an O&M and an assistive technology assessment.
“As a parent, I know things should have been different and I can’t beat myself up,” she says. “At the same time, I wish I knew then what I know now.”
So has Melisa. In fact, not only has she stepped up to help her daughter, she’s taken a giant leap to help other parents in similar situations. She creates and distributes story boxes through EyeAm Kids, a subscription story box company for children ages 3 through 6 who are visually impaired. The story boxes include braille books, a sensory bin, a tactile craft, and more – all built around a different monthly theme such as Arctic Adventures.
Each box comes with a book, and some have orientation clues, cues, and concepts. The books teach early comprehension skills and literacy skills, with a focus on the Expanded Core Curriculum (ECC).
“I want to empower families to make crafts and educate them on skills their child may be working on,” Melisa says. “Sometimes the activities may feel challenging but siblings often jump in to help.”
For example, she says her son didn’t like the Orbeez water beads but likes shaving cream, so he enjoys using them together. The point is to get creative and even a little messy sometimes.
“It’s never easy, but there are things you can do to empower and educate yourself and your child,” Melisa says. “Don’t stop researching or asking questions. If I make a mistake, it’s a way to teach my child because the public isn’t always the kindest. It empowers her to see me walk this journey with her and I keep encouraging her to advocate for herself, too.”
Looking for more resources? Here are just a few:
- APH’s catalog, which includes a wide range of early education tools
- FamilyConnect, an extensive resource for families of children with visual impairments
- NOAH (National Organization for Albinism and Hypopigmentation)
- PCVIS (Pediatric Cortical Visual Impairment Society)
- Thriving Blind Academy
- Facebook groups specific to a diagnosis