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Seeing the Board
Jupiter Video Magnifier: My daughter uses the Jupiter Portable Video Magnifier from APH to see the board in school. Schools can buy this using Federal Quota funds, meaning it doesn’t cost your school anything, if your student is registered as legally blind. My daughter has two desks next to each other at the front of the room, one for her, and one for her Jupiter. The day before school starts each fall when teachers are in the building setting up classrooms we arrange to meet her teachers and tour her classrooms. My daughter lets her teachers know when desk arrangements don’t work for her and changes are made. Masking tape on the floor marking the location of her desks helps make it easy to push stuff back into place throughout the year when it gets moved around.
The biggest drawback to the Jupiter is weight. This thing is portable, but it is still 16 lbs. That is too heavy for my daughter to lug around on top of her 20 lb backpack with laptop and other school supplies. So we have an aide in her IEP for 25 minutes per day just to carry the Jupiter from class to class. This does not seem ideal—there will be no such Sherpa to help in college—so in the long run she needs a different solution. But for now, this is what our school is making work.
Note: The Jupiter also lets my daughter read documents if the print is too small, but she rarely uses this feature since most documents are digital now, and she can zoom in using her laptop.
CoaSt (Camera on a Stick): My daughter recently tried lots of products out at our local low-vision store. What came to the top of her wish list to replace her Jupiter is the CoaSt. It is a camera on a collapsable tripod that connects to your MacBook or iPad via USB-C. It weighs less than a pound, folds up smaller than a full size water bottle, and doesn’t need charging since it draws power from your laptop or iPad that serves as its screen. Its high-quality camera beats out the Jupiter on several dimensions: it is great at capturing video, can be adjusted in any direction, and has a de-skew feature so that when a rectangular screen or board is viewed at an angle, it can be viewed as a true rectangle (as opposed to the typical trapezoid you get without software adjustment). This seems like a college ready solution—no sherpas or smart boards required.
Smart Boards: We’ve met others with achromatopsia who have smart boards in their schools. These smart boards can mirror what is on the board onto their tablet or laptop, no matter where they are sitting. Super cool! I wish our school had such modern tech. A word of warning though: Most colleges and universities won’t have smart boards, so this is likely not a solution for college.
Screen Mirroring: Mirroring via smart board works for PowerPoint slides projected on the smart board, or for the smartboard digital equivalent of chalk work. Without a smart board, screen mirroring of PowerPoint slides or videos can work by having the teacher screen share on a Zoom or Google Meet link. If the teacher uses the same meeting link everyday, the student can simply have it bookmarked in their browser, and tune in each time they enter class. This is a college-ready solution. Its drawbacks are that screen mirroring via Zoom or Google Meet can have a noticable lag. An alternative if student and teacher are both using Macs is to do Apple screen sharing.
Writing and Art Supplies
Writing Supplies: The number 2 pencil is a school staple, but it provides low contrast and is hard to read for someone with achromatopsia compared to a nice, thick, black pen. My daughter highly recommends Pentel EnerGel 1.0m Ball points.
If your student needs to work in pencil, skip the standard number 2 and use a softer pencil such as a Faber-Castell 8B. It will be darker and higher contrast.
Art Supplies: For elementary school, make a color box. When you are ready tell everyone to shove it with their colors—do art in grey scale! See Art Tips.
Peer Education
Each year in early fall Kindergarten through 3rd grade our daughter gave a presentation with our support to her class. We led the presentation in Kindergarten with her help, and she contributed more and more each year as she got older. We educated her class about what achromatopsia is, what it means for her vision, and about the tools she uses (video magnifier, color-labeled crayons, cane, etc.). We also distributed a one-page letter to fellow parents with similar information for students to take home with them. This really helped ward off incessant questions about her tools, her vision, and about whether she could see a color. Highly recommended!
Our daughter decided these were no longer necessary in 4th grade, because her whole grade had seen the presentation by then. When teasing came up again in the 8th grade, she revamped her presentation and gave it to her whole team of 60 classmates.
Services
- Get registered as legally blind in your state. This opens up so many resources. This not only unlocks Federal Quota funds for your student to get assistive technology from your school district, it opens up other resources for you as well. It makes it easier to qualify for early intervention (by diagnosis – very helpful if your child is not actually delayed in any way), but is also a point in your favor when trying to qualify for an IEP. There are specific blindness laws relating to special education, and being registered as legally blind makes it harder for the district to tell you your child does not need services and accommodations. Being registered as legally blind also enables you to access your state vocational rehab services once you turn 14. In some states, this includes paying college tuition at an in-state university. It also means money for job training and/or pre-college programs. Legal blindness also qualifies you for an ABLE 529 account, which is a savings vehicle intended for people with disabilities that is more flexible than a regular 529 and under a particular limit does not count against federal benefits like social security. If you have a state commission for the blind, people under 14 may get services as well, such as a social worker who can act as an advocate for you in IEP meetings. Our state commission for the blind paid for a week of overnight summer camp for visually impaired kids. People who are legally blind in the USA also qualify for a free lifetime National Parks pass, and often free or discounted public transportation.
- Under the age of 3? Get registered with Early Intervention. Even if your child is not delayed in any way, they can get vision services. EI is a family program, so can provide resources and support for the parents as well. Through our state’s Early Intervention program, we did a playgroup for low vision children that was combined with a parental support group. One week, at this support group, the social worker brought in two adults with visual impairments, one of whom had achromatopsia. We did not yet have the right diagnosis, but when we heard this adult’s story, lightbulbs went off in our head. We spoke to our ophthalmologist about it, and this ended up leading to getting the correct diagnosis of achromatopsia. Most importantly, the folks at EI will help guide you through the transition process into the school district (at age 3 in most states in the USA). The IEP process can be very stressful and daunting, and EI will be right there helping you transition. If you don’t have EI, you have to navigate it on your own. Many parents do this, but if you can get help, take it!
- Find out how IEPs and 504s work in your state. Your school district probably has a SEPAC (special education parent advisory group) that can point you to resources. Get an IEP. You’ll want a range of accommodations as well as direct services for orientation and mobility instruction and a teacher for the visually impaired (TVI). Remember that being trained to use assistive technology and orientation and mobility services (not just cane training, but also things like crossing streets, navigating unfamiliar places, etc) are direct services, not accommodations.