Downloadable “After the Diagnosis” Toolkit
In a hurry? Want to share FamilyConnect’s information with a friend or family member who doesn’t have easy access to the Internet? These printable toolkits, available in both English and Spanish, offer the crucial information that families need to know after the diagnosis.
Learning that Your Child Is Blind or Low Vision
There is no right or wrong way to cope with the news that your child is blind or low vision. Whatever you’re feeling—anger, sorrow, guilt, confusion, anxiety, or fear—you need to know that your emotions are natural and shared by virtually all parents faced with problems that affect their child’s health and well-being. There are a number of strategies that can help you balance your life and your concern for your child.
Acknowledge Your Feelings
Recognize that each parent responds differently to having a child with blindness or low vision. Try not to compare yourself or your spouse to other parents or criticize yourself because at times you may feel depressed, angry, or have other distressing emotions.
Take Good Care of Yourself
You’re entitled to take care of your own life without feeling guilty. In fact, you need to. Eating what’s good for you, getting enough sleep, relaxing as much as possible, and continuing activities that are rewarding to you are all important aspects of maintaining an effective day-to-day life. Good health is essential to keeping up your spirits as well as your physical strength and, in that way, helping your family and your child.
Getting emotional support from people who care about you is crucial. When you feel less than perfect, you may have a tendency to withdraw from friends and sometimes from family, too. Although you may feel shaken and exhausted at times, try to stay in touch with your friends, family, and others who can boost your spirits and help you cope.
Find a Good Listener
Many people find that simply talking about what’s bothering them is a great relief. Choose someone you’re comfortable with, who won’t judge you, and who will just listen to how you feel. An empathetic ear is invaluable for most of us as we try to sort out what we feel and what to do.
Give Yourself Time to Adjust
Adjusting to the news of your child’s eye condition is part of a continuing process. In many ways, every family is in constant transition, and it may be helpful to keep that in mind. Give yourself and your family time to absorb this situation, and begin to see your circumstances in terms of what steps you can take to ensure your child’s successful future.
Connect with Other Families
Get in touch with other families who have had similar experiences. Many parents who’ve raised a child with blindness or low vision have a lot of expertise to share with you. They can help you find contacts, current medical and educational information, and useful resources. They can also offer you tremendous emotional support along with suggestions and tips from their own experiences raising a child with blindness or low vision. You can begin making connections by going to the message boards on FamilyConnect. Another way to meet parents is by joining The National Association for Parents of Children with Visual Impairments (NAPVI). You can get a list of other national and local parent support groups under Find Services on FamilyConnect.
Work with Knowledgeable Professionals
Consult with professionals who are specialists in blindness or low vision about your child’s eye condition. University-affiliated hospitals, professional organizations, and national organizations in the field of blindness and low vision are good sources of referrals and other information. This site is also a good source of information about finding specialized professionals and helpful organizations.
Become Informed About Your Child’s Eye Condition
Learn as much as you can about your child’s eye condition. Some excellent sources of information include: early intervention teachers and therapists, medical doctors, eye care and low vision specialists, libraries, the Internet, national organizations serving people with visual impairments, and other families with a child that is blind or low vision. When talking with your child’s doctor, be sure to ask any and all questions you have and request explanations of any answer that isn’t clear to you.
Establish Long-term Relationships with Key Medical and Other Service Providers
Every family needs a trusted group of experts who can offer sound advice and ongoing help. You may find it helpful if your own group includes the following professionals:
- A pediatrician
- A pediatric ophthalmologist or optometrist
- Various other specialists, such as an early interventionist, a teacher of students with visual impairments, an orientation and mobility specialist, a physical therapist, a speech and language therapist, or a psychologist, depending on your child’s specific needs
Seek Out Intervention Services
If your child is under age 3, work with an early childhood interventionist. Babies who are blind or low vision are eligible for early intervention services. The professionals you’ll meet through early intervention have skills and experience that can help your family through the first few years of your baby’s life. For information and referral to services near you consult the lead agencies for early intervention in your state.
If your child is over age 3, work with a teacher of students with visual impairments. Children who have blindness or low vision that impacts their education typically qualify for services from a teacher of students with visual impairments and an orientation and mobility specialist. These professionals work with children to help maximize their educational potential. Contacting your school district’s special education office is the first step to locating services for your child.
Keep Good Records
Set aside a place in your home for maintaining files on your child’s medical condition and school status. It’s a good idea to separate medical from school files, but any system that helps you keep important information organized and easy to locate is invaluable. Save copies of:
- Doctor’s reports
- Reports from other consultants or specialists
- Correspondence between you and any educational and medical program or agency with which you’ve had contact
- Copies of your child’s Individualized Family Service Plan (IFSP); Individualized Education Program (IEP) once your child begins school; and copies of other official reports
- Results of any assessments of your child
Know the Law
Knowing what your child is entitled to is invaluable information. It’s your guide to knowing what to ask for and how to ensure that your child gets the services she needs. Important laws include the Individuals with Disabilities Education Act (IDEA) and the Americans with Disabilities Act (ADA).
Find out the names of your local and state legislators and how to reach their neighborhood offices. They can be very helpful when you need information about contacting the appropriate person to help your child or confirming what your child’s rights are under the law.
Focus on the Positive
It’s easy to put your own needs on the back burner when you’re dealing with the news of your child’s eye condition. Don’t forget about yourself or feel that you’re not entitled to do the things that you enjoy. Remember that first and foremost you child is a child and not a disability. Enjoy the for who they are. Nurture, play, discipline, and give your child the love and attention needed. This will help in their development and you’ll feel better too.
The arrival of a new baby is a major family event that affects everyone—you especially, but also your baby’s siblings, grandparents, uncles, aunts, and cousins. They are all going to be affected, in one way or another, by your child’s blindness or low vision.
Your Spouse or Partner
You and your spouse may have a multitude of feelings that affect you deeply. If you can be supportive of one another; focus on the love you share as a family; and recognize the strength you can gain from that, you may find it easier to cope with conflicting feelings that can interfere with your ability to think and act constructively. Try to set aside time regularly for yourselves, individually and as a couple. Keep doing the things you enjoyed doing alone and those you enjoyed doing together, even if you can’t do them as often or as easily. Give yourselves time—weeks, months, and longer, if necessary. It takes time to adjust to any new situation and to learn ways of dealing well with your circumstances and your feelings. Life is an ongoing process, a series of transitions, and you’re in transition now. It may be helpful to remember just that.
But if you can’t shake the feeling of being overwhelmed by immediate concerns and anxiety about the future, you may want to consider seeking counseling or other external support.
Your Other Children
If you have other children, the fact that their baby brother or sister is blind or low vision may have a strong impact on them. Depending on how old they are, their reactions will vary. As they get older, they’ll understand more, need more information, and may want to help their little brother or sister. At times they may also be jealous of the extra time you spend with your child. They’re going to want—and deserve—your time and attention too. Realistically, your child with blindness or low vision is going to require more of your time, attention, and energy, but you don’t want to lose sight of your other children’s needs.
Grief and Other Feelings
Recognize that brothers and sisters—and everyone in the family—may grieve for the “normal” baby they anticipated. At times they may be angry, depressed, resentful, jealous, or in denial about their brother’s eye condition. Those feelings are normal. After all, you probably have them too. But if you find that your older child’s behavior has changed in ways that worry you—that school work has suffered; that they dropped out of weekly softball game; that they have stopped going to the mall with friends—consider seeking professional help.
You can’t expect older siblings to be “on duty” all the time to help their sibling. While it’s a good idea to involve them in the care sometimes, that shouldn’t interfere with their own childhood fun.
Your other children need a fair share of your time. Try scheduling outings with them to do things they especially enjoy. Have a “movie date” with your son every couple of weeks—and leave the choice to them. Go to your child’s soccer game as often as you can and have a special treat together on the way home.
Depending on their ages, keep your other children up to date on what’s going on with their sibling—whether it’s a new medical procedure or the decision about which preschool they’ll go to when they are three. While you don’t want to burden them with details, share as much information as you think is appropriate about what’s happening or may happen soon so they’re not taken by surprise or left to worry about the unknown.
If your baby gets early intervention services and your other children are toddlers or preschoolers, they may be jealous when people come to your house with what they think are great toys and they don’t get to play with them. Talk to the professionals who visit about ways they can involve your other children during their home visits. If you take your child to a center-based program, ask the professionals there for ways to get your other children involved.
Your older child may feel that they are the only one in the world with a sibling is blind or low vision. If you’re in a parents group or an early intervention program, you’ll meet people who can probably put you, and your other children, in touch with other kids in a similar situation so they can compare experiences and learn from one another.
The relationship between grandparents and grandchildren is often very special. But it may be hard for your parents to know how to behave with a grandchild who is blind or low vision. Like brothers and sisters, grandparents will grieve for the “normal” grandchild they expected. They’ll probably need your help to understand the importance of treating your little one the same as their other grandkids—that they need their love and support; will learn to do the things other children do, although differently; and is an important part of the family.
Talking to Family and Friends about Your Child’s Eye Condition
Whether you’re talking with family, friends, or complete strangers, there will be times when you’ll be uncomfortable, confused, or angry at people’s reactions. You may get advice or questions you don’t want, hear stories about other people with disabilities, and receive empathetic pats on the back. Try to remember that most people have little or no experience with vision loss and so they’re not sure how to react to you or your child.
Your Child, Your Message
Most people will follow your example about how to treat your child and the topic of their eye condition, so think about the message you want to give them about your baby.
- Give the facts: Tell people the name of your baby’s eye condition and how it affects how they see. Depending on your relationship and how much information you want to share, you can also tell them what you’ve learned about raising a child who is blind or low vision. You might want to share the FamilyConnect website address with them so they learn more about blindness or low vision.
- Let people know what you want from them. Tell them what your baby needs. If you want them to treat your son the same as they treat other children age, tell them. If you want them to understand how to interact with a child who is blind or low vision, ask them to talk to your child and explain what they’re doing.
- Share what you need, too: If you want a friend to just listen, tell the person you’re not asking for advice, just a sympathetic ear. If you want some time to yourself to work through difficult feelings, let family and friends know that having them watch your kids for an occasional afternoon would be a big help. No one is a mind reader, so it’s important to communicate clearly about what you and your baby need.
- Share what you don’t need: If you don’t need advice or don’t want to hear stories about medical miracles that happened to other families, let others know.
Some people may think that when you tell them about your baby’s eye condition, you’re asking them to help fix the problem. Explain that your baby’s vision loss probably can’t be “fixed” with eyeglasses or surgery. But your baby can learn to use whatever vision they have, plus other senses, and become just about anything they want to be. Though it may be difficult at times to maintain, a positive attitude can help make life better for you and your baby. Don’t focus on what your child can’t do; instead, concentrate on what they can do. You can help others do the same by sharing your baby’s successes with them.
FamilyConnect is an online, multimedia community created by the American Foundation for the Blind (AFB) and the National Association for Parents of Children with Visual Impairments (NAPVI). This site gives parents of children with blindness or low vision a place to support each other, share stories and concerns, and link to local resources. The site also features a mom-authored blog, inspiring video testimonials from families, and articles authored by parents and experts in the field of blindness on multiple disabilities, technology, education, and more. From the personal to the professional, families will find all the resources they need to raise their children from birth to adulthood.
The American Foundation for the Blind and the National Association for Parents of Children with Visual Impairments would like to thank the Lavelle Fund for the Blind, Inc. and the Conrad N. Hilton Foundation for their generous support as charter sponsors of FamilyConnect. We are also grateful to The Annie E. Casey Foundation and Morgan Stanley for their support.
Copyright © 2009 American Foundation for the Blind. All rights reserved. Material provided on FamilyConnect.org is intended for informational use only and is not a substitute for professional medical or legal advice. If you have any concerns about your child’s health or legal rights, please contact your family health provider or attorney.