Learning That Your Child Is Blind or Low Vision

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There is no right or wrong way to cope with the news that your child is blind or low vision. You need to know that your emotions are natural for whatever you’re feeling—anger, sorrow, guilt, confusion, anxiety, or fear.

There are some strategies that can help you balance your life and your concern for your child who is blind or low vision.

Acknowledge Your Feelings

Recognize that each parent responds differently to having a child with an eye condition. Try not to compare yourself or your spouse to other parents or criticize yourself because you may sometimes 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 rewarding activities are all important aspects of maintaining a practical day-to-day life. Good health is essential to keep up your spirits and physical strength and, in that way, help your family and your child.

Stay Connected

Getting emotional support from people who care about you is crucial. When you feel less than perfect, you may tend to withdraw from friends and sometimes from family. Although you may feel shaken and exhausted sometimes, 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 will listen to your feelings. 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 blindness or low vision is 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 regarding 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 valuable resources. They can also offer you tremendous emotional support, suggestions, and tips from their own experiences raising a child. You can get a list of other national and local parent support groups in the “Find Services” section on FamilyConnect.

Work with Knowledgeable Professionals

Consult with specialists in blindness or low vision about your child’s eye condition. University-affiliated hospitals, professional organizations, and national organizations 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 who 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

Work with an early childhood interventionist if your child is under age three. 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 three, work with a teacher of students with visual impairments. Children with an eye condition 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 to maintain files on your child’s medical condition and school status. Separating medical from school files is a good idea, but any system that helps you keep important information organized and easy to locate is invaluable. Save copies of the following documents:

  • 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) and Individualized Education Program (IEP) once your child begins school and copies of other official reports, and
  • 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 needed. 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 your child’s rights under the law.

Focus on the Positive

It’s easy to put your needs on the back burner when dealing with the news of your child’s blindness or low vision. Don’t forget about yourself or feel you’re not entitled to do what you enjoy. Remember that, first and foremost, your child is a child, not a disability. Enjoy your child for who they are. Nurture, play, discipline, and give your child the love and attention needed. This will help in development, and you’ll feel better, too.