Navigating Our Way to Adulthood: A Parent’s Perspective

“Baby Week” at Overbrook School for the Blind

One such opportunity was what was informally called “Baby Week” at Overbrook School for the Blind (OBS). My husband, Greg, and I traveled with Madeline to Philadelphia from New York State, where we were living at the time, for this intensive conference-like summer week for caregivers run by the school’s birth-to-3 years teaching team. We slept in the dorms at OBS and ate in the cafeteria along with the other families who attended the program. We had teacher- and therapist-led workshops during the day about topics such as maximizing functional vision and what to expect in terms of language development in children who are visually impaired (i.e., those who are blind or have low vision). We experienced simulations of visual impairments. In the evenings, we learned how to make tactile books from everyday materials around the house and took part in a group therapy session with a social worker. Madeline spent her days that week in a classroom with a teacher of students with visual impairments (TVI). There were sensory bins, lightboxes, and fun multisensory toys. When she became cranky and overtired, Madeline was held and rocked by a kind classroom assistant who let her nap in her arms for hours at a time. Although visual impairment happened to be new to us, we learned that there were people who had already figured out much of it and would teach us what they knew.

“Let’s Play!” Program at the University at Buffalo

Another paradigm-shifting experience for us as a family during Madeline’s first 3 years of life was the Let’s Play! program at the University at Buffalo’s Center for Assistive Technology (Goldbaum, 1998). The center was a “play center” and toy lending library for babies and toddlers with disabilities. Every four to six weeks, our family of three at the time would meet with an educational specialist affiliated with the department of occupational therapy for a play session where staff members would observe Madeline, talk with us, and then provide toys and set up play environments that interested Madeline and motivated her and us to play together. As a baby with a visual impairment, Madeline responded to materials and toys with more impactful sensory attributes than the toys that interested other babies her age who were sighted. Whatever the particular area of development Madeline seemed to be pushing through or working toward, the Let's Play! program and its resources were there in response to it, immediately. Such agility is not always found in programs and services for individuals with visual impairments.

Our week at OBS, time with the Let’s Play! project, and several other opportunities during Madeline’s first few years of life were provided at little to no cost to us. We learned about these programs entirely through word of mouth, including discussions with one of our very first official contacts with the visual impairment “system,” a representative from the New York State Commission for the Blind, who came to our house soon after Madeline’s diagnosis of a lifelong visual impairment as an infant. Although specific programs and learning opportunities for families who are new to the world of visual impairment will vary from place to place, it is helpful for families to contact key agencies in their region to begin widening their circle of supports and taking advantage of available resources.

Developmentally appropriate practice

By the time Madeline reached preschool age, she had received a variety of services and therapies in different forms, such as itinerant (at home and in her child care center) and in an early childhood program that was designed specifically for children with visual impairments. It was becoming clear to us as she grew and developed that she was quite gregarious like her dad and, thus, most energized, stimulated, and joyful when surrounded by busy, talkative, fast-moving peers. Not all educational placements for children with disabilities provide that kind of environment. Likewise, my husband and I realized we were most confident in our parenting when supported by seasoned early childhood general educators, in most cases parents themselves, who conveyed a trust of and respect for child development. Their attitude was a significant pivot away from messages we received from therapists and early childhood special educators, messages that felt to us like a project-based approach to our child with a disability, as if she were solely a compilation of potential problems that needed to be fixed or prevented.

Although we continued to receive early intervention services and, by this time, had worked with a few different vision professionals in two states, we found it disconcerting to be constantly reminded about what Madeline was not doing at any given point in time and to be preoccupied with what should come next developmentally. Alternate messages from experienced general early childhood teachers and administrators in her neighborhood preschool, where she was by now spending part of the day, sat better with us and provided a much-needed balance to messages of deficit and an over-preoccupation with the future coming from specialized services and therapies. Whereas a TVI lamented that Madeline, then a toddler, might have “low muscle tone,” an early childhood teacher in her developmentally appropriate child care center admired Madeline for “experimenting with different ways of sitting.” Whereas a young TVI working in an early intervention preschool program reported to us that Madeline, age 3 years, needed to “learn how to share,” an experienced general early childhood teacher reassured us that Madeline was actually very good at being 3 years old, at which age sharing is quite difficult developmentally. For that reason, her afternoon mainstream preschool had several of the same toy. Whereas a TVI felt Madeline, at age 4 years, really needed to begin “learning independence” by taking a school bus to her morning special education preschool program, we knew that our friends with young children who did not have vision loss drove or walked their children to preschool. There, parents and teachers valued seeing each other during drop-off and pick-up times, and caregivers gathered in the parking lot where they socialized and scheduled playdates.

Although Madeline had some unique needs, she was more like other children than she was different. She continued to receive services from well-trained and well-meaning specialists, but it was our neighborhood preschool and its implementation of developmentally appropriate practices (National Association for the Education of Young Children, 2020) that aligned with our parenting values and best met our needs as a family at that time. And these nonspecialists were more than willing to rise to embrace the challenges our situation presented. One day, when dropping Madeline off at preschool, I chatted with the program director and apologized that it might be extra work for her teachers, general early childhood educators, to have a child with a visual impairment in their large preschool classroom. She quickly corrected me, “Some teachers—good teachers—wait most of their professional lives for the opportunity to have a child like Madeline in their classroom.”

It is important for families to know about the full array of educational placement options available for children with visual impairments and to work with their child’s teachers and therapists to make an informed choice about what program or combination of programs would be best for their child at any given time. In addition, service providers who may be experts in visual impairment but who may become isolated in special education classrooms or special schools should consider periodically spending time in general education settings as part of their continuing professional development. As always, service providers need to be aware of caregiver differences, both cultural and familial, regarding values and practices related to socialization, education, and parenting.

During her preschool years, our family learned to balance our attention to Madeline’s needs as a child with a visual impairment with an appreciation for her as a whole child, to keep one eye on what we needed to do to help her reach future milestones, but to fully appreciate and enjoy wherever she was developmentally at the moment, in other words, to value the “blessing” of the present (Mogul, 2001). We found just the right combination of programing for our family, a high-quality neighborhood preschool with itinerant services from a TVI and orientation and mobility (O&M) specialist.

Electronic discussion groups

Deciding what type of educational setting would be best for our child had been daunting for us as parents. Would it be better for Madeline to be with classmates with similar needs, in an environment with small class sizes, classrooms designed to accommodate her visual impairment, and with teachers who were specialists in her disability? Or would it be better for her to be in a real-world, general education setting, with a lot of typically developing peers—the children of our neighbors—whose language, social skills, movements, and interests would serve as peer models for Madeline, even if we had to stay vigilant and advocate for her needs? We worked through that decision, as well as countless other ones, with a large, diverse group of people, the majority of whom we had never met.

It was during Madeline’s early preschool years that we became active on an electronic discussion group for parents, the BVI-Parents Listserv, which was created by an adult who was visually impaired herself. Not too long after joining the first group, we joined a second electronic discussion group created by a mother in Great Britain for individuals affected by Madeline’s particular eye condition, the LCA Listserv. I cannot emphasize enough how valuable these online communities were to us as a family, not just for support, but for sharing and receiving straightforward information as well as opinions, experiences, and insights. It was through these parent discussion groups that I first learned that individuals with visual impairments who were taught braille early in life and used it extensively had better employment outcomes than those who did not (Ryles, 1996); that hands to individuals who are blind are like eyes to individuals who are sighted, and that they should be respected, not automatically manipulated, by sighted adults (Story, 1998); that there is an important role for a paraeducator in some children’s educations, but such interactions must be carefully planned (Castellano, 2005); and that life experiences such as exploring nature and using different forms of transportation are just as important for a visually impaired child’s literacy development as is instruction in reading (Koenig & Farrenkopf, 1997). Parents in the electronic discussion groups compared services and gathered information they needed for advocacy in their respective worlds. Adults with visual impairments weighed in and shared their techniques and experiences. Many of the adults in the discussion group with visual impairments were in college, working, married, or parents themselves. To this day, Madeline is friends with some of the children who, like her, grew up with parents who were supported in these online communities.

Throughout Madeline’s early years, we continued to widen our circle of supports and to learn not only from her preschool teachers and early intervention service providers but from other parents of children with visual impairments and adults with visual impairments. Today, families have even more access to these valuable supports and resources and can similarly learn from other parents, adults with visual impairments, and even firsthand from scholars and researchers themselves. (see e.g., the Family Connect website now hosted by American Printing House for the Blind https://familyconnect.org/.)

School age

From kindergarten through 12th grade, Madeline attended our neighborhood public schools in a suburb of Philadelphia with itinerant TVI and O&M services. Early on in elementary school, an instructional assistant was brought into the fold who evolved into a braille material specialist. Madeline’s Individualized Education Program (IEP) goals primarily centered around braille literacy, assistive technology, and O&M. We took very seriously our role as a family in Madeline’s learning, not only in doing the things many families in our community do such as a read with our children, help with homework, arrange for and take them to afterschool activities, and plan and host playdates, but also in making an extra effort to find or create for Madeline teachable moments in various expanded core curriculum (ECC) areas at home and in the community, types of experiences she may not have the opportunity to experience during her school day such as cooking, helping with household repairs, and running errands with us (Garber, 2014).

Throughout Madeline’s school years, there were excellent classroom teachers and mean teachers, amiable team players, and just plain difficult people. Although there were disagreements and moments of being disgruntled, complaining parents, we ultimately felt heard and understood as parents and believe Madeline received a fantastic education in our school district. We are fortunate to live in a part of the United States with an excellent public school system and no shortage of vision impairment personnel. Messages of support from administrators were especially important during Madeline’s school years. One special education supervisor reset a prickly meeting with, “I don’t want to hear about cost, I want to hear what she needs.” One vision supervisor, holding on his lap Madeline’s little sister, Molly (a baby at the time), inserted positive, forward-thinking gems into IEP meeting discussions, which planted images of Madeline’s great potential and success in other team members’ minds, including ours: “Well, when Madeline is in high school and taking physics, she’ll….”

Sports

Just as important as what she experienced in the classroom were the extracurricular activities, mostly sports, that Madeline participated in with the accommodations she required. Our family values health and fitness and understood the risk Madeline’s visual impairment posed to her engagement in a healthy level of physical activity (Lieberman & McHugh, 2001). Madeline joined a running club in middle school. She later joined the cross-country team in high school, as well as the crew team. These school sports experiences evolved into adult recreation and leisure activities in the community, including rowing with Pennsylvania Center for Adapted Sports (https://www.centeronline.com/) and running with our Philadelphia Chapter of Achilles International (https://www.achillesinternational.org/), where health, fitness, friendships, and regular opportunities for socializing continue. In addition, Madeline’s comfort with running enabled her to begin “giving back” so to speak as a volunteer running buddy with individuals in Philadelphia experiencing homelessness through the Back on My Feet program (https://backonmyfeet.org/).

Summer programs for youths with visual impairments

Like most students with a low-incidence disability such as blindness, Madeline was, for most of her school years, the only student in our district with her particular set of needs (i.e., an auditory and tactile learner, braille reader, and long cane user). As much as our school district provided an appropriate education for her with optimal services, technology, and quality instruction, we felt there might be some social-emotional gaps to consider. For example, it is healthy and fun to be a member of your school’s cross-country running team with sighted classmates. However, it is demoralizing to finish every race last or second-to-last, despite beating one’s own personal record. It was time for Madeline to experience more even playing fields with other kids her age who were also visually impaired and to take part in programs planned carefully enough to allow her to not only participate independently, but to excel. To accomplish this goal, we found we needed to piece together various short summer programs for youths with visual impairments which, unfortunately, happened to be geographically dispersed. I researched programs carefully and spent some time at them in person to ensure they were high quality and safe.

For several consecutive summers, Madeline spent a week at the New Jersey shore with kids her age who are visually impaired (https://www.dillerblindhome.org/), a few weeks at a traditional sleep-away summer camp in New Hampshire for youths who are visually impaired, a long weekend at Camp Abilities in West Chester, Pennsylvania (https://www.campabilitiespa.org/), and a week at Camp Abilities in Brockport, New York (https://www.campabilities.org/). The last two are sports camps for children and youths who are visually impaired. Although these summer programs were either free or had modest fees—they typically cost less than comparable programs for sighted children—they did require a lot of planning, paperwork, and driving on our part (as well as some days off from work), which we felt fortunate to be able to manage. Madeline learned so many important transition-related skills because of these summer programs, including how to plan and pack for stretches of time away from home, how to maintain one’s living space in a dorm room or camp bunk, how to navigate unfamiliar settings away from familiar people, and how to make and keep new friends. She also just had a lot of fun in these relaxed, spirited settings, where visual impairment was the norm, not the exception, and where, in the case of Camp Abilities, camper athletes regularly and proudly sing, “No big deal; I’m blind!” (Kelly, 2012). Caregivers, including us, likewise benefitted by witnessing the confidence and pride Madeline and her peers experienced from participating in such programs. After years of attending as a camper, Madeline was able to return as a counselor for some programs, where she began to build a foundation of work experience.

Blindness consumer groups

The importance of early work experiences for future employment among individuals with visual impairments (Capella & O’Mally, 2012) was a theme emphasized during a talk my husband and I attended at a blindness consumer convention when Madeline was still young. Our family was quite opportunistic and eclectic in where we sought information about visual impairment. Although we did not affiliate with any particular consumer organization over the course of Madeline’s life, we subscribed to consumer group publications and attended a few national conventions hosted by the National Federation of the Blind (NFB) and American Council of the Blind (ACB). Here, Madeline attended accessible science workshops; met Abraham Nemeth, creator of the Nemeth Braille Code for Mathematics and Science Notation; browsed through braille flea markets; received first aid training; attended social skills and fitness workshops; and made new friends and met up with acquaintances she had made through the online discussion groups for students who are visually impaired she was now participating in herself. I traveled with Madeline to those conventions she attended when she was a minor and took part in sessions that interested me as a parent and professional, including a multiday workshop where I received training in audio description.

National consumer conventions are held in a different city each summer and last approximately a week. The registration fee and hotel room rates are deeply discounted. Like the blindness-specific summer programs she attended, consumer conventions provided Madeline with the experience of being with a lot of people who are blind together in one space, a rare occurrence for someone with a low-incidence disability. One time, amidst the joyful, energetic comradery and singing during an NFB banquet, I pointed out to Madeline, who was a child at the time, that the banquet hall was filled almost entirely with thousands of people who are blind and that I was just one of only a handful of sighted people in the room. I guess she felt as if she had to console me, so she sweetly reached over and touched my hand, reassuring me, “It’s OK, Mom.”

Academic progress and school-based learning for children and youths with visual impairments, while important, are only one part of a path leading to adulthood. Our family felt it just as important to make sure Madeline participated in extracurricular activities, including sports, and that she had opportunities to make and spend in-person time with friends who are visually impaired, which sometimes meant traveling away from home at carefully chosen summer programs especially designed for youths with visual impairments. Other families will naturally have their own set of values and ideas about what they feel is best for their children, especially when it comes to extracurricular activities and spending time away from home. However, it is important that families know what types of camps, vacation opportunities, conventions, and the like are available. When barriers to participation in special programs such as these are present for some families because of distance, need for transportation, paid time off from work, extensive paperwork, and possibly cost, I would hope that educators, agencies, and other stakeholders serving individuals with visual impairments would be able to assist families should they need it.

Transition programs

We are fortunate in Pennsylvania to have several intensive summer programs for high school (and now middle school) students with visual impairments who are interested in transitioning to employment or post-secondary education, and Madeline participated in two of these and thoroughly benefitted from them, the Transitional Vocational Initiative (https://www.obs.org/what-we-do/transition-vocational-initiative.cfm) program at OBS and the Summer Academy at Penn State University (https://www.dli.pa.gov/Individuals/Disability-Services/bbvs/Pages/Summer-Academy-for-Students-Who-Are-Blind-or-Visually-Impaired.aspx). Both programs are made possible through partnerships with the Pennsylvania Bureau of Blindness and Visual Services (BBVS), which is part of the Department of Labor and Industry’s Office of Vocational Rehabilitation (OVR). These transition programs are provided at no cost to Pennsylvania students and their families. Through OBS's vocational program, Madeline practiced employment-related skills such as writing a résumé, searching for a job, and participating in interviews. She explored jobs in her areas of interest at the time and participated in job-shadowing activities, all while gaining experience living in an apartment on the school’s campus. The emphasis of the summer academy program was on preparing for the transition to higher education. Madeline honed her assistive technology and O&M skills, lived in a college dorm room, navigated and ate in the university dining hall, attended college lectures, met with the office of disability services, and further developed her independent living and self-advocacy skills.

The adult vocational rehabilitation system

In high school, Madeline began having regular contact with her vocational rehabilitation counselor from BBVS, who had authorized her participation in the summer transition programs, arranged a precollege technology evaluation (Madeline’s assistive technology devices provided by her school needed to be returned after high school graduation), and authorized O&M services prior to college. Throughout her high school years, Madeline periodically received targeted services through BBVS when she had a particular need related to O&M or cooking. Throughout college and during the two years now since she has graduated, BBVS helped provide specialized technology training such as when Madeline needed to learn a relatively new business collaboration platform and further develop her proficiency with a spreadsheet application. BBVS also provided considerable college tuition assistance.

What did not work out so well with the adult vocational rehabilitation system were a few key moments when Madeline needed to function within real-world time lines and OVR and BBVS were not responsive or agile enough to provide the specific supports she needed in a timely manner. For example, the technology purchased for Madeline to use in college and beyond, which she needed prior to the start of classes to purchase books, communicate with professors, and complete required online training sessions related to campus safety, did not arrive until well into Madeline’s first week of college classes. This delay was maddening and obviously added another layer of stress on an already stressful life transition.

Similarly, during her college years, Madeline found, applied for, and was accepted for a summer internship in a research lab at a prestigious university in another state. Despite meeting all the application deadlines and doing everything on her part required of her, she only had a few weeks in between when she learned she had been accepted for the internship and when it began. This somewhat quick turnaround time is common in the world of work. Although staff members from the large university were exceptionally responsive in assisting her with housing and dining arrangements, the adult vocational rehabilitation system could not, for reasons that are still unclear to us, provide or coordinate the O&M services she requested for her new living and work situation.