Resources for Parents of Children Newly Diagnosed with Vision Loss
You are at the beginning of journey. At this early stage, you may feel overwhelmed if your child has been diagnosed with vision loss. You are not alone. There are many resources available, some of which we have gathered to help you and your child begin to experience a life full of joy and wonder!
Find a Pediatric Ophthalmologist
Support for parents of children with vision loss
Birth to 3
Congratulations! Enjoy your new baby! No matter how much vision your child has, she/he will respond to your touch, your voice, and your smell. Keep in mind, if your baby does not see well, she/he will rely on other senses to bond with you. Saying “hi” and talking to your baby will help her/him know you are in the room. In general, using rich, descriptive language will help your child begin to understand the world around her/him.
Become familiar with your baby’s eye condition
- Your child’s eye care specialist will be able to help you understand your child’s diagnosis, treatment, and or surgery if needed.
- Having a clear diagnosis and an understanding about your baby’s condition is important because you will be sharing this information with others in order to provide the best services possible. It may be helpful to have a simple fact sheet available for providers, friends, and family.
- Try to keep a copy of a current eye report available.
- Sometimes it’s helpful to bring a friend or family member with you to appointments to help take notes or even ask questions.
- It may be helpful to write questions down before you go to the doctor such as:
- What is my child’s diagnosis?
- Is the condition stable?
- Is there any treatment?
- Ask your eye care specialist about registering with your state commission for the blind which may have resources available for you and your child.
Early Intervention Services
Be sure to enroll your baby with an Early Intervention agency. Early Intervention services are services provided to children and families, usually in the home. In some states you can be referred to Early Intervention by your child’s pediatrician or ophthalmologist and services are provided free of charge. In other states, you can be self-referred and payment depends on your income. Once an Early Intervention agency has been chosen, a service coordinator will refer your child for a formal evaluation to determine whether your child qualifies for services or not. When the evaluations are complete, a meeting will be held to discuss outcomes. If services are recommended your service coordinator will find the appropriate specialists to deliver services. Specialists may include vision services, occupational therapy, physical therapy, speech, and special instruction. A team of providers will be formed, including parents, to develop IFSP.
- An IFSP or an Individual Family Service Plan is a plan that documents the outcomes of evaluations, establishes goals to be addressed, and develops a schedule of quarterly meetings with the team to discuss and continue to develop plans for your child.
If vision services are recommended, services will be provided by a teacher of the visually impaired (TVI). A TVI is a teacher trained and certified to evaluate, teach, train, and consult with students, their families, and other service providers about issues specific to vision loss.
- Children are eligible for Early Intervention from birth to 3 years of age.
- Before your child turns 3 and ages out of Early Intervention, a series of evaluations will be conducted to determine if services will be provided to your child between 3-5 years of age (preschool).
Preparing the Environment
- You will need to “baby proof” your home much the same as any parent would.
- You might ask your pediatric ophthalmologist about the best type of lighting for your baby. Some children will be sensitive to light and others may need additional light to enhance their vision.
- While pastel colors are pretty, bright primary colors, black, white and simple patterns are easier to see and therefore preferable for children with vision loss.
- Try to keep clutter to a minimum.
Activities of daily life such as eating, sleeping, bathing, etc. are opportunities for children who have vision loss to begin to make sense of their environment. Because these activities happen routinely it is helpful for your child to know when what is happening. There are a variety of cues that may help your child anticipate these routines. Cues can be verbal, “time for bed,” tactile, or a combination of both verbal and tactile. Examples of using a verbal and tactile cue might be giving your child a teddy bear at bed time and saying “time to sleep,” a spoon at dinner time and saying “time to eat,” a diaper at changing time and saying “time for bathroom,” a book at story time and saying “let’s read,” a sock at dressing time and saying “time to get dressed,” and a favorite bath toy at bath time and saying “time for a bath.” Below are some daily routines with suggested approaches.
Playing with your baby
Take time to play with your baby. Play is fun and allows time for all children to discover and learn. If your baby does not see well, or does not see at all, remember that she/he will need help understanding how to play with new toys.
- It might be helpful to describe the toy and what you are doing with it as you play.
- Encourage your baby to touch and explore the toys. You might have to encourage her/him to touch things using your hands to guide her/his hands over the toy.
- It may be helpful to let the toy touch the baby’s body so that she/he will know it is there. A baby may not reach for a toy, even if it makes a sound, if she/he does not know what it is or how to play with it.
Types of Toys
- Toys that make noise or music are usually very motivating for children with vision loss.
- Toys that have bold, bright colors and lights are recommended for children with usable vision.
- Toys that have a variety of textures, sizes, and shapes are fun for most children.
- Activities that incorporate more than 1 sense, such as scented bubble bath, scented play dough and balls with bells in them for example, are great for all children.
Feeding your baby
Mealtime is challenging for some babies. Try to imagine what it would be like to have your eyes covered and someone tries to put a spoonful of food in your mouth. Imagine that you do not like the food on the spoon. Imagine you were expecting a spoonful of rice but you got a spoonful of applesauce instead. That might be upsetting, especially if it happens at every meal!
It might be helpful to allow your baby to touch the food you are feeding her/him before you put a spoonful in her/his mouth. Let her explore the food with her fingers, and maybe even put her fingers in her mouth. Watch to see if she likes it. You might be able to give her a spoon while she is playing. Maybe you can help her bring the spoon to her mouth?
Giving her the chance to explore the food before you put it into her mouth may help her know and enjoy mealtime. You may want to try a variety of textures, temperatures, and flavors. Give your child a cue (such as “open for cereal”) when bringing the food to their mouth and when finished (“all done”).
Bath time can be lots of fun! Add some toys like cups and sponges into the tub. Encourage her to splash and play in the water. Remember to use descriptive language during bath time. You might like singing songs like “head, shoulders, knees, and toes” as you wash each body part. Add some scented bubble bath, sponges to squeeze, cups to scoop and pour water, and any other toys to help make bath time a pleasurable experience. Remember to use descriptive language at bath time. You can say things like “the water smells good,” “the water is warm,” “you are all wet,” or “I’m washing your feet.”
Dressing and undressing is another daily routine that can become a learning experience. Even when your child is just an infant you can describe and label clothing and body parts. For example you can say “I’m taking your shoes off your feet,” “I’m going to put this hat on your head,” and “your mittens are on your hands.” Gradually your child will begin to understand which article of clothing goes where and will soon move on to taking clothes on and off independently. Because you want your baby to grow to be independent, it’s helpful while learning to dress and undress to use looser fitting clothing with front opening and large buttons and zippers.
Story time is a good time to cuddle with your baby. If your baby has no vision, try to read books that have textures, make sounds, or music. Textures, shapes, and Braille can be added to any book with a little creativity and glue. Children with limited vision will also like books with textures and Braille. When looking for books for children with limited vision, try to find books with large, bold, print and pictures that are simple and uncluttered.
Bedtime or sleep routines are sometimes difficult to establish, especially for children with vision loss.
Transition to Preschool
Preschool may be the first time a child is away from home without a family member and is often a first step toward independence. It can be a huge adjustment for you and your child.
According to the Federal program, Individuals with Disabilities Education Act (IDEA), if your child has a disability he/she is eligible to a free, appropriate, public education (FAPE). This includes children between the ages of birth to 21 years of age. If your child has vision loss and is 3-5 years of age he/she is eligible to preschool special education in a Least Restrictive Environment (LRE). If your child is already receiving Early Intervention services he/she will be referred for evaluations for preschool. If your child is newly diagnosed or if you suspect there is a problem, contact your local school district for information about how to begin the evaluation process.
Prior to beginning preschool a Teacher of the Visually Impaired (TVI) will conduct an evaluation of how your child is currently performing and will determine whether or not vision services are recommended. If services are recommended the TVI will write Individualized Education Program (IIEP) goals and objectives to help address your child’s specific needs.
During the evaluation process, evaluators may determine that your child is experiencing delays in areas of development in addition to delays in visual development. Some children will be eligible for programs that provide services such as:
- Related Services are services provided to your child (such as Vision Services, Orientation and Mobility, Occupational Therapy, Physical Therapy, and Speech/Language Therapy) by a licensed professional and may be provided at home, in your child’s school, daycare center, or a therapist’s office.
- Types of Placements include:
- General education class with a Special Education Itinerant Teacher
- Integrated classes are classrooms with children with and without IEPs
- Special class which has only students with IEPs
- Residential placements are educational services that are provided for 5 hours per day for 5 days per week in a site where children receive services 24 hours per day
Terms related to Vision Loss
- Teacher of the Visually Impaired (TVI) special education teacher whose job it is to meet the unique educational needs of students with visual impairments including teaching Braille, Assistive Technology, and computer skills. The TVI is responsible for assuring that the student has appropriate learning materials and that the classroom environment is adapted to meet the student’s needs.
- Orientation and Mobility (O&M) specialists teach individuals with visual impairments to travel safely, confidently and independently in their environment. They work with infants, children and adults usually on a one-to-one basis in a home, school, hospital or in the community.
Find a pediatric ophthalmologist
Familiarize yourself with vision related terms
- Article: Tips for parents of blind and visually impaired infants and toddlers
- Parent Resource Books
- Center for Parent Information and Resources: General information about disabilities and educationand resources
- In-depth information about the Individuals with Disabilities Education Act (IDEA)
- Article: Photophobia and Light Sensitivity in Children