We are still working on finishing up Lyra’s IEP for this year. Â Hopefully we will have the final version completed by the end of next week. Â The following is what I wrote to be included in the “Parent Concerns” and “Plans for the Future” sections of her IEP.
Lyra is a sweet, caring, and expressive little girl. She is relentlessly curious and never seems to stop asking questions. She is fiercely independent, stubborn, and intelligent. At times, her brain/mind seems to move too quickly for her mouth or body to keep up. Lyra has advanced language development, is very articulate and is good at remembering/memorizing facts, her environment, and events. Lyra can read and write all uppercase and lowercase letters of the alphabet, most sight words, and is able to decipher unfamiliar words. Her improved reading skills and strong desire to learn continually enhance her love of reading. Lyra is genuinely empathetic and cares about the needs of others. She LOVES to draw and color pictures. Details are very important to her and every picture has a story. Lyra has a wonderful imagination and loves to make up songs and stories and play pretend.
One of our biggest concerns is that Lyraâ€™s teachers would settle for average expectations. I never want to hear a teacher say, â€œfor a child with low vision, sheâ€™s doing good.â€ She should be expected to excel at least as well as her fully sighted peers. It is very important to us that Lyra becomes proficient in both print and Braille. We want Lyra to receive instruction in Braille reading and writing to enable her to communicate and compete at a level equivalent to her sighted peers of comparable grade level and intellectual functioning. She must learn Braille tactually. Lyra may show resistance to learning braille, so itâ€™s important that we maintain a positive approach and build enthusiasm for her braille reading and writing. We also want Lyra to be taught to use a slate and stylus as it is the only Braille-writing device that has the same portability, flexibility, and affordability as a pen and pencil. We want Lyra to develop the skills that will enable her to read for an extended time without discomfort, postural strain, or undue fatigue. She must be equipped with tools and skills that will allow her flexibility so that she can read under various circumstances, environments, and lighting conditions.
Over the summer it has become clear that at this point, her vision IS slowing her reading progress! We see her wanting to read EVERY book we get, but then stumbling over words, not because she can’t pronounce them, but because she can’t SEE them. It is clear that she is a much slower reader than she desires to be and is capable of. As a parent, I often feel guilty when at bedtime, I’d rather read all of the books to her myself because she takes too long. However, when I am reading to her, I get frustrated because I constantly have to tell her to move back so I can see the words on the page to read and every time I turn the page, she gets smacked in the head with it.
One of our long term goals for Lyra, which we have included in her IEP for the past few years, is that she be able to read 50-75 WCPM in both print and braille by the end of first grade. She has been receiving direct braille instruction for more than 3 years now and is nowhere near reaching that goal. Lyra is highly intelligent and has demonstrated an accelerated rate of learning. There is no reason why her braille reading/writing skills should not be at the same level as her print reading/writing skills. In order to address this delay, we feel it is necessary to increase the amount of time she receives for direct braille instruction. In addition to direct instruction, it is important that Lyra also begin actually USING braille daily within the classroom. We would like her to begin using braille to complete spelling tests and journalÂ writing assignments. She must have consistent daily practice of braille reading and writing or she will never become fluent. Expectations for her braille learning must be higher and she should not be allowed to settle for anything less than she is capable of.
Itâ€™s important that Lyra become proficient in the use of various low vision devices and assistive technologies. This is an area that Lyra has a delay in, compared to many of her same-aged peers who have albinism. She needs training in how to effectively use a monocular to view/locate objects in her environment. Development of effective monocular skills is potentially one of the most beneficial skills in terms of assistive technology. We want her to continue to learn how to use computer magnification software. She should also be having regular exposure to other magnification devices including stand magnifiers and a CCTV
.Lyra is extremely sensitive to bright light both indoors and outdoors. Bright lights and glare significantly reduce her functional visual acuity. It can cause a â€˜whiteoutâ€™ or â€˜washoutâ€™ effect, something similar to the experience of driving directly into a sunrise or sunset. If someone is standing in front of a window, a light or a bright doorway, she is likely only able to see their silhouette. Her eyes are forced to work MUCH harder in lighting conditions that are too bright. We are very concerned about the long-term effects of eye strain and visual fatigue. It is important that Lyra be encouraged to verbalize this discomfort whenever possible.
Lyra does not have fine vision, so she has a significant reduced ability to see details, including faces. This is a safety and a social concern. Lyra does not know a person is looking at her unless they say so. Unless Lyra is very close to your face, she cannot see facial expressions. This means she cannot see her peers or her teachers when they wink, raise their eyebrow, roll their eyes, smile or frown. She is also typically unable to recognize non-verbal communication such as a shoulder shrug or pointing to something. Lyra frequently misses social cues from her peers and may not be aware that someone is inviting her to play or showing their displeasure with her. Lyra still struggles to make eye contact effectively. We worry about incidental learning like manners, posture, eating etiquette, and gestures such as head nodding means yes, and head shaking means no.
Lyra often relies upon cues such as hair, body movement, clothing and voice to recognize people at a distance. These strategies work well in â€œclosedâ€ situations such as the classroom, but in an â€œopenâ€ situation such as a busy hallway or playground, it becomes very difficult for her to recognize people. This can pose a potential danger when in public areas. Socially this can be a problem in instances when friends/peers run off and Lyra has difficulty following/locating them, ESPECIALLY when playing outside, where her fine vision is limited further by the brighter light.
Also because of lack of fine vision, she may be unable to participate fully, during circle time, Â PE class, or other activities that require gross motor skills. Her nystagmus makes it very difficult for her to follow moving objects. Any music and movement activities involving finger-plays or actions will be extremely challenging for her in a group setting. Not being able to see something during an activity will also impact her ability to remain attentive and could potentially lead to an increase in disruptive behaviors. Lyra’s nystagmus also results in poor depth perception. When playing outside, her lack of depth perception can cause serious safety issues. She may not be able to judge the distance she is from a moving swing or merry-go-round, or the distance she is from a ledge/ drop-off on play equipment. We want Lyra to be able to travel independently and safely both indoors and outdoors. While she is not currently receiving any direct O&M services, we feel this is an area that needs to be reevaluated. Lyra must acquire independent, efficient, and safe orientation and mobility skills not just for at home and school, but also for various environments within the community.
We want Lyra to continue to develop self-advocacy skills. She must be able to advocate for her own needs, i.e. tell her teachers when she can’t see something, remind people that she needs sunscreen, hat, sunglasses, glasses, etc. We want her to be able to explain her condition, albinism, using simple and age-appropriate terms. Lyra needs to learn to answer for herself, advocate for herself, and respond to â€œalbinoâ€ appropriately.
Because of the lack of melanin, Lyra’s skin, including her scalp are extremely susceptible to sun damage. Lyra must wear a hat and sunglasses at ALL times when outside, even on cloudy days. At least 20 minutes before going outside, she must have sunscreen applied to all exposed areas of her skin, including her face, the tops of her hands, and if wearing sandals, the tops of her feet. These things are a matter of medical necessity.