Last Updated: February 23, 2021 References
This article was co-authored by Ran D. Anbar, MD, FAAP. Dr. Ran D. Anbar is a pediatric medical counselor and is board certified in both pediatric pulmonology and general pediatrics, offering clinical hypnosis and counseling services at Center Point Medicine in La Jolla, California and Syracuse, New York. With over 30 years of medical training and practice, Dr. Anbar has also served as a professor of pediatrics and medicine and the Director of pediatric pulmonology at SUNY Upstate Medical University. Dr. Anbar holds a BS in Biology and Psychology from the University of California, San Diego and an MD from the University of Chicago Pritzker School of Medicine. Dr. Anbar completed his pediatric residency and pediatric pulmonary fellowship training at the Massachusetts General Hospital and Harvard Medical School and is also a past President, fellow and approved consultant of the American Society of Clinical Hypnosis.
There are 9 references cited in this article, which can be found at the bottom of the page.
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Finding out your child is blind or visually impaired is certainly a challenge. There is no right or wrong way to cope with the news and it can be extremely stressful for you and your family. You might feel a mix of emotions such as sorrow, anger, guilt, confusion, anxiety, or even fear. It’s important to understand that these emotions are normal and other parents around the world face the same problem, accepting and coping with their child’s diagnosis. There are ways you can balance out your life, and at the same time, deal with your concerns for your blind or visually impaired child.
By Rachel Seavey
When you’re married to a legally blind man, much like Kenny Rogers suggests, you’ve gotta know when to hold ’em, know when to fold them, know when to walk away, and know when to run. In other words, it’s important to learn when to help your spouse out and when to let him or her figure things out on their own.
Visually impaired people (VIPs)
The general public often views visually impaired people (VIPs as my husband likes to say) with pity. As if they are unable to care or do for themselves. When someone you love is losing their vision, it’s very easy to want to step in and do things for them. If you could, you’d do EVERYTHING for them. But I’ve learned that my VIP husband is a super capable guy, and in my marriage, me babying or coddling him doesn’t work well for either of us.
My visually impaired husband
My husband, Sam, has Stargardt Disease. It’s a form of macular degeneration that often begins in childhood. He was diagnosed at 11 years old and was legally blind before he ever got a driver’s license. We didn’t meet until we were both in our twenties, so I’ve only known Sam with vision loss. His vision has deteriorated in the 20 years that we’ve been together so some things that he could do easily when we first met, are a bit more challenging now, so we’ve adapted over the years.
Helping a loved one who is visually impaired
Learning how to walk that tight rope between being helpful and being annoying takes a bit of trial and error and a whole lot of practice. Early in our dating relationship, Sam often tried to downplay and almost hide his vision loss. I didn’t really understand the full extent of his vision loss until we’d been together for quite some time. There have definitely been a few failures on my part along the way. Luckily, we can both get a laugh out of the sometimes embarrassing situations that can arise.
Leading the way
One time we went to the movies, the previews had started so the theater was quite dark. I headed up to the second row turned around to ask Sam if this was close enough for him and realized there was no one behind me. I didn’t realize that with the lighting so low, Sam was almost completely blind. He couldn’t see me, or the seats, or anything else. He stood frozen near the entrance. I took his hand and led the way back down to our seats. I’ve since learned that if we’re visiting somewhere with low light, it’s a perfect chance to hold my honey’s hand and help him navigate.
Misjudging vision loss
On the opposite end of this spectrum, there were times that I misjudged how much he could NOT see. Once he was cooking at the stove and I was standing off to the side talking to him while he cooked. I was wearing a skirt with tights and my tights were slipping down. So annoying right? Well, I thought there was no way he could see me. So, I started scooting my tights up, starting at my knees and working my way up my legs. Just as I was about so scoot my skirt up to adjust my tights further Sam stopped me with a, “You do know I still have decent peripheral vision right?”. Uh, no, no I did not. That time around, it was I that was red in the face and he was laughing.
As I mentioned, my husband lived with vision loss for many years before we met. He had learned how to adapt. If your loved one loses vision later in life, you may be there for that transition. Don’t be tempted to do everything for them. Definitely be a support to them. But encourage them to learn how to do things on their own. Reach out to others to hear about their solutions to problems as you encounter them. Feel free to research what assistive technology may be helpful for them. But doing everything for them can make your loved one dependent on you. This can be difficult for the VIP and also can lead to resentment from you.
Two decades in, we’ve pretty much found our rhythm. When eating out I can usually tell if I’ll need to read the menu for Sam or if the menu is printed in a way that he can decipher it with the help of his handheld magnifier. If we watch a show together and text pops up on the tv, I read it aloud to him without even thinking. (Fair warning, I’m in such a habit of this, I often read it aloud even if I’m watching tv with someone OTHER than my husband.) Sam can still mow the grass, but I try to get outside before he finishes so I can point out any places he’s missed before the mower gets put away. It’s easier for me to do the trimming and edging though.
Finding ways to help
What I have found as the best way to assist Sam is to just offer help. I don’t assume he needs help. If he seems to be struggling with something, I don’t just jump in and take over. I simply ask if he’d like help. I also try to feel out situations or environments as they come up. Alert him if I notice a broom leaning against a wall or a shallow step that isn’t very visible. If we bump into a friend, I greet them with their name so that Sam also knows who is there.
Adapting to vision loss
So my best advice for someone learning to be helpful to their visually impaired loved one? Don’t baby him, he can still do almost everything he did before, maybe just slightly differently. Be patient, learning how to adapt to his vision loss especially when it’s new can be scary, frustrating, and time-consuming. Expect a few grouchy moments and “I don’t need your help!” retorts. And have a sense of humor, because life is more fun when we can laugh together.
Published on May 29, 2018 | Last updated on June 20, 2019
Most people can tell you that one of the most difficult jobs is being a parent. No one is ever actually ready to be one (even if they tell you they are) and most learn ‘on the job.’ It is a 24/7/365 job. It is difficult enough, as it is, for parents who are sighted. But, how do those who are blind or visually impaired manage, when their kids are sighted? It definitely makes it that much more difficult. That is not to say that it is impossible. There are plenty of resources to help blind and visually impaired parents through any trials and tribulations they may encounter. I, as neither blind nor a parent, cannot give advice, however, can provide some great resources online that can hopefully alleviate some of that angst you may be feeling in such a situation. Here are some great resources for blind parenting.
Blind Parenting: A Resource Guide
There are many Facebook groups out there of blind and visually impaired people. The best advice comes from crowdsourcing, and Facebook is the best way to get into that crowd. Groups range from tens of members to thousands of members. The groups listed here will only be from those with 500+ members.
[Editor’s Note: The following post is excerpted from When You Have a Visually Impaired Student in Your Classroom: A Guide for Teachers, edited by Susan J. Spungin and available via AFB Press. Further details available at the end of this post.]
Will you have a child with a visual impairment in your classroom this year? Individuals working with children with visual impairments, whether or not they have other disabilities, will find the following basic guidelines helpful in interacting with students:
- Consider the child as more like other children than different from them. Talk with the child about his or her interests and experiences and expect the child to follow rules that are appropriate to his or her developmental level.
- Always let a visually impaired child know when you are approaching or leaving. Identify yourself by name, especially if the child doesn’t know you well. Never make a game of having a child guess who you are. To do so can be confusing, frightening, or frustrating to a child.
- Briefly describe aspects of the environment that might be of importance or interest to the child that he or she cannot see.
- Always ask before providing physical assistance. If the child cannot understand words, offer your hand or arm for assistance. If the child does not know you well, touch him or her only on the hands or forearms, as you might touch another person in a social situation. Reserve hugging and close physical contact for children who know you well, especially if the child is older than preschool age.
- Use words like “blind” or “visually impaired” in normal conversation with the child, but only when they are important to the topic being discussed. Feel free to use words like “look” and “see,” just as you would with any other child.
- When walking with a child, encourage him or her to hold your arm near or above the elbow and to use a cane, if he or she has one. A young child might hold your wrist or forefinger. Discourage hand holding as a means of providing travel assistance; help the child understand that it is a way of expressing affection and is different from travel assistance.
If your baby has hearing loss, some aspects of baby care can be a little tricky. Here’s what to expect and how to help your infant develop at her own pace.
Before your newborn leaves the hospital, she’ll undergo a quick, painless test to check her hearing. Although most babies can hear just fine, the American Academy of Pediatrics estimates that up to 3 out of every 1,000 babies are born with some type of hearing loss. The risk for hearing difficulties is higher — 4 out of 100 — for those who spend time in neonatal intensive care. “This may be due to oxygen deprivation or assisted ventilation, exposure to ototoxic medication [antibiotics harmful to hearing], or hyperbilirubinemia [jaundice] that required a blood transfusion,” says Jori Weingarten, an audiologist at Nationwide Children’s Hospital in Columbus, Ohio. Still, the American Speech-Language-Hearing Association (ASHA) estimates that more than half of all cases of newborn hearing loss are caused by inherited genetic defects.
It’s become state law for hospitals to conduct universal newborn hearing screenings. If you learn that your baby has a hearing problem, an ear, nose, and throat (ENT) specialist, or otolaryngologist, will review medical options. In the most profound cases, a cochlear implants can be surgically placed in a child’s inner ear to help restore her ability to hear sounds, but a child must be a year old to undergo this procedure. Because a lot of language acquisition occurs during an infant’s first year of life, it is recommended that all hearing-impaired babies wear hearing aids. These devices can make communicating, bonding, and caring for your baby a little easier.
Feeding. If your infant has a hearing aid, you may hear some feedback from it while nursing or bottle-feeding if there is something covering the microphone. “The ear mold [attached to the hearing aid] can loosen when a baby’s ear is pressed up against mom or dad during feedings,” Weingarten explains. “Escaping sounds are picked up by the device’s microphone and then reamplified, creating a high-pitched whistling noise.” That screechy noise is more annoying to you than to your little one. You can turn off the hearing aid or remove it if the sound becomes too unpleasant.
Sleeping. To help with speech and language development, your baby should wear his hearing aid for at least six to eight hours a day. “The standard rule is that hearing devices are worn during all waking hours so children get maximum exposure to sounds,” Weingarten says. Remove the hearing aids when your baby naps and when you put him down for the night.
Reaching Milestones. Children who have hearing loss have a higher risk of language and speech problems, which is why early detection and intervention are key. At the time that your baby was diagnosed, you should have received information about early intervention programs in your area (if not, talk to your pediatrician). These free programs are covered by the Individuals with Disabilities Education Act (IDEA) and include speech-language therapies. Research shows that hearing-impaired children who begin early intervention programs before 6 months of age develop language skills (either spoken or signed) on par with their hearing peers.
Baby sign language is used to foster early communication by parents whose babies have normal hearing, as well as by parents whose babies have hearing loss. The signs were adapted and modified from American Sign Language. “The more opportunities you can provide for a hearing-impaired child to build vocabulary and master communication, the better,” Weingarten says. So although you don’t necessarily have to use sign language to communicate with your child, it could help improve her language skills. Another way to aid your baby’s language acquisition is to make sure that she sees, as well as hears, what you are saying. This doesn’t mean speaking loudly or exaggerating sounds. Face your child when you speak, and make eye contact. If necessary, tap her lightly on the shoulder or wave your hand to get her attention before you talk. Be expressive when communicating with your baby — use hand gestures and facial expressions, and show your feelings by cuddling, touching, and smiling.
Remember that you do not have to navigate your baby’s first year alone. Your pediatrician, ENT specialist, and early intervention counselor can help you as you learn to care for and communicate with your hearing-impaired child.
All content on this Web site, including medical opinion and any other health-related information, is for informational purposes only and should not be considered to be a specific diagnosis or treatment plan for any individual situation. Use of this site and the information contained herein does not create a doctor-patient relationship. Always seek the direct advice of your own doctor in connection with any questions or issues you may have regarding your own health or the health of others.
Blindness or visual impairment can have a profound impact on your life, but you are still in control. We have an abundance of information to help you, whether you’re visually impaired, losing vision, or know someone affected by vision loss. Explore these resources and discover how to continue living a healthy, productive life with vision loss.
Resources for Living With Vision Loss
Guide to Eye Conditions
A brief overview of conditions that are the cause of blindness or visual impairment.
Losing Your Sight?
VisionAware™, now stewarded by the American Printing House for the Blind, is a comprehensive resource for basic information about adjusting to vision loss, including tips for adapting your home and daily living. There’s also extensive information and support for senior citizens who are losing vision, as well as their family members and caregivers.
For Parents of Children Who Are Blind or Visually Impaired
Originally created by AFB and the National Association for Parents of Children with Visual Impairments, FamilyConnect® offers information and an interactive community for parents of children with visual impairments, with resources to help navigate infancy to the teenage years.
A round-up of issues related to technology for visually impaired and blind people, including AFB’s acclaimed online technology magazine AccessWorld®, which offers objective reviews of mainstream and assistive technology products for people who are living with vision loss.
For Job Seekers
CareerConnect® is your guide to the working world as a blind or visually impaired person. Learn from the experts about exploring careers, conducting a job search, getting hired, and succeeding in the workplace.
An overview of braille and literacy, resources for finding braille publications, and the Braille Bug®, an interactive website for kids.
This section has been written based on what parents tell us they would like to know. It includes practical advice, ideas and contacts for parents and families of children with vision impairment.
Your child and vision impairment – first steps
We know it is a worrying time – there’s no “normal” response to finding out your child has a sight condition – people respond in different ways. Here you will find important contacts and information to guide and support you with those first steps.
Our information and advice for parents is also available in a downloadable booklet for those who prefer offline or hard copy material:
Information about vision impairment: Guide for parents.
Starting Point is a leaflet for parents of babies and children who are newly diagnosed with an eye condition. It has been produced by a collaboration of support charities and introduces Sight Advice FAQ which you can use to ask particular questions about your child’s diagnosis and the support and services available to you. Starting Point is given to families in eye clinics.
If you are a professional who would like to distribute the Starting Point leaflet to families you support please contact Guide Dogs at [email protected] to order copies.
There are many ways you can encourage independence, and help your child to move around more confidently, begin to look after their own needs and feel more confident at mealtimes. Your child may need to be taught skills that others do by imitation, and we tell you about the people who can help with this.
Learning and school
Children with vision impairment are entitled to support for their learning from birth onwards by a specialist teacher called a QTVI. If your child has complex needs, they will usually be supported in a special school in your local authority – find out more on education and learning.
Find out about financial support, grants and allowances for families of children with a vision impairment.
We have advice and guidance for young people as they make the transition from school into further or higher education, employment and adult support services. See our Young People’s section for more details.
Feeding and Weaning
Eating and drinking independently
As a carer or family member of someone with sight loss, you may be entitled to claim benefits to help you and the person you support
Books, Play and Toys
Learn more about Toys and Games
We’re here for you
Our Helpline is your direct line to the support, advice, and products you need to face the future with confidence. If you or someone you know has an eye condition, our sight loss advisers can help.
A student walks with a cane in one hand with the other on the teacher’s arm as a guide. Another student walks behind them using a guide cane as well.
There’s no “secret” to interacting with people who are blind. They just want to be treated like everybody else, with courtesy and respect. Since 1829, Perkins has been teaching children with visual impairments the skills they need for independence and confidence. We do this on our Massachusetts campus, as well as around the world. You can learn more about what Perkins does here.
Here are six suggestions that will make your next interaction with someone who is blind more respectful of them and more comfortable for you:
While not all of these tips are appropriate for social distancing today, we all look forward to a time when we can offer our arm for assistance in the future.
- If you think someone who is blind may need help navigating, ask first. It’s jarring for anyone to be unexpectedly grabbed or pulled, but especially so for someone who can’t see who’s doing the grabbing. By asking, you give the person a chance to accept or decline your help”
- If your help is accepted, offer your arm, tell the person you have done so and allow him or her to grasp your arm just above the elbow. That makes it easier for the person to feel your movements and follow on their own terms.
- If you see someone who is blind or visually impaired in imminent danger, be calm and clear when you warn the person. Use specific language such as “there’s a large pothole right in front of you,” or “the sidewalk in front of you is blocked for construction” instead of “watch out!” Also, use directional language such as “to your left” or “directly behind you” rather than “it’s over here.” Remember that using directions in relation to other things doesn’t work for someone who can’t see those other things.
- Identify yourself when approaching someone who is blind, or when entering a room with them. Even if the person has met you before, he or she may not recognize you by your voice. In a group setting, address the person by name so they know when you’re talking to them. And inform the person when you depart, so they don’t continue the conversation to an empty room.
- Never pet or distract a working guide dog. These dogs are busy directing their owners and keeping them safe. Distracting them makes them less effective and can put their owners in danger.
- Consider using “people-first” language and take personal preferences into account. While Perkins often uses people-first language (i.e, “a person who is blind” rather than “a blind person”), many are reclaiming the word “blind” to describe themselves freely and proudly. Respect a person’s preferences and learn about the work being done to separate the word from negative connotations and stereotypes.
A little understanding and sensitivity goes a long way. By following these suggestions, you’ll find that making a human connection is easy. It doesn’t matter if one person can see and the other can’t.
The effects of blindness often extend beyond loss of vision. For more information about different types of blindness, read here.
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