Tips for Helping Your Child Cope with Stargardt Disease
If your child or teenager has been diagnosed with Stargardt disease, you may be wondering how you can help them cope and adapt. You, your family, and especially your child may feel scared, sad, and withdrawn.
Working with your eye doctor
It is okay for you and your child to take the time to process the emotions that accompany their diagnosis.1 It is also okay to know you are not alone. Your pediatric eye specialist team should be able to put your family and child in contact with support groups for Stargardt’s. They should also have many resources for children with Stargardt’s and for their families.1 The following are just a few recommendations, accommodations and adaptations that we found to keep your child safe, more comfortable and better able to navigate their home.
High contrast environments
High contrast environments can help children who have low vision navigate their homes. ‘High contrast’ references the contrast between an object and its background.2 For example, if your living room is painted a light color and your couches are chairs are dark colored, they will be easier for a child with low sight to see than if the couch and chairs are light colored. This can be used in many areas of the house, including bedrooms, (light sheets and dark pillows), the bathroom, (dark towels and floor mats) and even your kitchen cupboards (light or dark contact paper can be added to the inside of cupboards to contrast bowls, plates and cups). You may even ask your child if they have a color preference that they can see best, and work this color into your high contrast environment.
For children with low vision picking one item out of a cluster of objects can be very difficult.3 Reducing clutter can make object-finding so much easier for a child or teenager. The places that this can be especially helpful include bathroom counters, kitchen counters, bedside tables or nightstands, desks and coffee tables. Placements of fewer items with more space between each object can be especially helpful.
Lighting and glare
Ask your child what type of light they prefer.3 Many children with low vision prefer natural light (such as sunlight), but some children find that too much light can actually be counter-productive, and can cause glares. Blinds, shades and dimmer lights can help your child reduce the amount of light in the room to their comfort.3 Sunglasses and broad-brimmed hats can help children with light sensitivity when outdoors.1 Also, be aware that shiny surfaces can cause glares that can make your child uncomfortable. If your child prefers additional lighting, a light with a flexible stand (such as a gooseneck lamp) may help them to focus and angle the light to their specific need.3
There are simple safety steps that can be taken for low-vision children.3 These include:
- Keeping the doors either propped open, or fully shut so that no one walks into them
- Keeping all walking pathways are clear of clutter that can be tripped over
- Taping the edges of throw and area rugs to the floor as they can be a tripping hazard3
Children with low vision may benefit from using their sense of touch to help navigate their home. Having different floor textures in different rooms (for example, tile in the kitchen, carpet in the living room, and hardwood in a dining room) can help a child be aware where they are in the house.3 Children can also benefit from tactile differences in objects that are specifically theirs, like a twist-tie on their toothbrush, or a velvet ribbon on their hairbrush handle.3 Tactile labels can help your child navigate the kitchen cupboard or even the refrigerator. If your child learns braille, there are braille label makers that can be incredibly useful.3
Not all assistive technology is high tech. Some children benefit from a monocular when they are watching television or stand magnifier when they are reading.1 A lot of computers and smartphones have high-contrast modes that show white letters on a black background, which can be easier for children with low vision to read.4 Many computers and smartphones also have screen reading programs or apps that can make technology more accessible for children with low vision.
Work with your care team
There are many adaptations that exist, and your care team should work with you to help you to find the best solutions for your child and family’s needs. Don’t be afraid to ask for additional help or resources as your child’s eyesight changes or gets worse. These suggestions are adaptable for changing needs, and you may find that you will have new questions as time goes on and your child’s vision changes progress.
Are you aware of assistive technology for AMD?