Many thanks to Sarah who sent in her account of working with a teacher of the visually impaired. – Ann Z
My nearly four-year-old daughter Isabella has multiple ocular diagnoses: severe hyperopia (farsightedness), astigmatism, mild macular hypoplasia (“underdevelopment of the macula, a small area on the retina responsible for seeing in detail” – read more) , latent nystagmus (“involuntary rapid movement of the eyeball, occurring only when one eye is covered” – read more), and intermittent exotropia (“eyes that turn outward” – read more). She began seeing an ophthalmologist at six weeks old and received her first pair of glasses at 15 months. Today at nearly age four, her acuity measures about 20/70 with correction. Isabella also has bilateral sensorineural hearing loss, childhood apraxia of speech (a motor speech disorder), hypotonia (low muscle tone), and fine and gross motor delays.
Isabella’s functional use of her vision has always been puzzling. As an infant and toddler, she could not seem to make eye contact, despite being otherwise a social child. She did not use a visually guided reach. Instead, she would glance at an object, look away, and then pick it up, feeling for its exact location. When she began walking, she was hesitant to let go of my hand and always stayed by my side. She avoided nearly all fine motor tasks, preferring interactive pretend play with her favorite stuffed animal Curious George and me.
In general, looking appears to be hard work for Isabella. She descends stairs without so much as glancing down at the location of the next step unless reminded repeatedly. She seems to navigate our entire home based on memory instead of sight. She frequently completes tasks such as getting dressed without looking. Her depth perception is poor. She prefers the familiar. When engaged in other demanding activities such as speech, Isabella sometimes takes visual breaks and looks off into space. Her visual performance is inconsistent; she is able to perform a task one day and not the next. She fatigues easily when engaged in the visual. Working on vision in a noisy environment is all but impossible. She is a master at avoiding activities that she finds challenging.
Thus far, Isabella does not have an overarching visual diagnosis that would fully explain her functional use of vision. Some have called it a delay in visual processing, and others suggest that she has some of the characteristics of cortical visual impairment. Perhaps some combination of neurological factors and her ocular diagnoses account for it. Perhaps it does not matter.
Isabella began seeing a teacher of the visually impaired (TVI) at 2 years and 8 months when I finally found someone—her physical therapist—who took my concerns about her use of vision seriously. At her assessment performed through Early Intervention and paid for by the county, the TVI administered the following evaluations: Functional Vision Screening Checklist, Oregon Project for Visually Impaired Children, and Developmental Inventory of Visual Efficiency (DIVE). The results showed delays in visual efficiency and qualified Isabella for services twice per week.
Isabella’s TVI began to work with her at our home on a variety of skills, e.g., scanning from left to right, puzzles, searching for items in a cluttered picture, patterns, discriminating same and different, sorting, and matching. These sessions were very challenging for Isabella, since she had never had to focus so much on visual tasks.
Slowly we began to see some progress. First Isabella began to handle visual clutter more effectively. She started to scan more effectively to locate objects in busy pictures. She learned to do and even enjoy the simplest inset puzzles and soon advanced to three and four-piece ones. A year later, she can complete a twelve-piece puzzle with limited assistance and eagerly tries new puzzles. She grasped the idea of patterns and discriminated between same and different. She could identify and name all her uppercase and most lowercase letters as well as numbers from 1-10. She could recognize multiple words in print such as her own name and those of her classmates and family members.
This summer Isabella reached the end of the road with her first TVI. He had approached his sessions seriously, almost academically, which became too much for our creative preschooler. He and Isabella were no longer a good match. Isabella’s performance during sessions tanked, and progress stagnated. After a few months of agonizing over this decision, we chose to seek a new TVI.
Isabella is again progressing with her new TVI, who has a much more playful approach. With a background in special education as well as vision, she has managed to incorporate pretend play, snacks, reading, and even breaks such as swinging into her sessions to maximize Isabella’s attention and motivation. Vision is now fun for Isabella rather than purely work.
Our new TVI has also suggested simple, yet revolutionary changes to Isabella’s environment to maximize visual performance. For example, Isabella now sits with her back to the window in our kitchen to minimize glare. We use a black cloth draped over the table for all close work to help Isabella see better and minimize visual fatigue. This new teacher has also visited Isabella at school, and we are working to integrate these and other accommodations into her school environment.
Since the start of vision services more than a year ago, I have observed a significant change in Isabella’s use of her vision. However, her work is far from over. Isabella still displays significant delays in visual efficiency, and her vision is far from typical. As she grows older and enters school, demands will only increase; visual tasks will only become more complex. We will persevere, providing her with appropriate accommodations and services for her education as well as presenting her with as many opportunities to use and improve her vision as we can in her daily life at home. I am certain that she will continue to amaze us with her progress.
A truly interesting read, I do hope little Isabella continues to improve after all her hard work.
Getting a therapist that “fits in” well with the child’s needs and personality is so important. Rock on, Isabella (and Sarah, who is a stellar mom)!
You are absolutely right, Leah. They are kids first and it must be fun!
Hello! My daughter is 6 months old and also has Macular Hypoplasia, Nystagmus, Astigmatism and Strabismus. What has your OP told you about Macular Hypoplasia? Ours hasn’t been able to tell us much, especially since they can’t tell how underdeveloped hers is 😦 I’m relieved to have found this to read; it seems like Isabella does well with her vision and that gives me hope for mine 🙂
Very interesting! Glad to find another child with a macular issue. My daughter has macular dysplasia, and so has no macular material at all (no central vision). She has several other eye conditions as well.
Your daughter seems like a sweet girl! Thank you for sharing your story!