Last updated: February 23, 2021 References
This article was co-written by Ran D. Anbar, MD, FAAP. Dr. Ran D. Anbar is a pediatric medical advisor and board of directors certified in both pediatric and general pediatric pulmonology, offering clinical hypnosis and counseling services at Center Point Medicine in La Jolla, CA and Syracuse, New York. With over 30 years of medical experience and practice, Dr. Anbar also served as Professor of Pediatrics and Medicine and Director of Pediatric Pulmonology at SUNY Upstate Medical University. Dr. Anbar holds a BA in Biology and Psychology from the University of California, San Diego and a Ph. D. in Medicine from the University of Chicago’s Pritzker School of Medicine. Dr. Anbar completed pediatric residency and Pediatric Pulmonary Scholarship training at Massachusetts General Hospital and Harvard Medical School, and is the former president, member, and approved consultant of the American Society of Clinical Hypnosis.
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Finding out that your child is blind or partially sighted is certainly a challenge. There is no right or wrong way to deal with the news and it can be very stressful for you and your family. You may experience a mix of emotions such as sadness, anger, guilt, confusion, anxiety, and even fear. It is important to understand that these emotions are normal and that other parents around the world are facing the same problem in accepting and addressing their child’s diagnosis. There are ways to balance your life while addressing the concerns of a child who is blind or partially sighted.
by Rachel Seavey
When you’re married to a legally blind man, as Kenny Rogers suggests, you need to know when to hold them back, know when to leave them, know when to leave, and know when to run away. In other words, it is important to learn when to help your spouse and when to let them solve the problem on their own.
The general public often looks at the blind with pity (VIPs, as my husband likes to say). As if they were unable to fend for themselves or do it on their own. When someone you love goes blind, it’s very easy to want to step in and do something for them. If you could, you would do ANYTHING for them. But I have found that my VIP husband is a super capable guy and in my marriage babysitting or cuddling him doesn’t work well for either of us.
My partially sighted husband
My husband Sam has Stargardt’s disease. It is a form of macular degeneration that often begins in childhood. He was diagnosed at the age of 11 and was legally blind before he got his driver’s license. We didn’t meet until we were both in our twenties, so I only know Sam who is blinded. His vision of him has gotten worse in the 20 years we’ve been together, so some of the things he could have easily done when we first met are a little more difficult now, so we’ve adapted over the years.
Help a loved one who is visually impaired
Learning to walk that narrow line between being useful and being annoying takes a bit of trial and error and a lot of practice. Early in our romantic relationship, Sam often made an effort to minimize and almost hide the loss of her sight. I didn’t really understand the full extent of his sight loss until we were together for a long time. There must have been some accidents on my part along the way. Fortunately, we can both laugh at the sometimes awkward situations that can arise.
Once we went to the cinema, the announcements started, so it was quite dark in the theater. I headed to the second row, turned to ask Sam if he was close enough for him and realized that there was no one behind me. What I didn’t realize was that in such low light, Sam was almost completely blind. He couldn’t see me, the seats or anything. He was standing at the entrance. I took his hand and led him back to our seats. Since then, I have learned that if we visit a place with low light, this is the perfect opportunity to hold my dear hand and help it navigate.
Incorrect assessment of vision loss
At the other end of this spectrum, there were times when I misjudged what he couldn’t see. He was cooking in the stove and I stepped aside and talked to him while he cooked. I was wearing a pantyhose skirt and the pantyhose was sliding down. So annoying, right? Well, I thought there was no way he would see me. So I started pulling up the pantyhose, starting with the knees and working up the legs. Just as I was about to lift my skirt to adjust the tights further, Sam stopped me saying, “You know I still have decent peripheral vision, right?” No no no. This time I was red in the face and he was laughing.
As I mentioned, my husband lived with blindness for many years before we met. He has learned to adapt. If your loved one goes blind later in life, you may be looking for this change. Don’t be tempted to do anything for them. Support them definitely. But encourage them to learn to do things for themselves. Connect with others to learn about their solutions to problems as you encounter them. We encourage you to explore what assistive technology can help them. But doing everything for them can make a loved one dependent on you. This can be difficult for a VIP and can even cause resentment on your part.
Two decades, we have practically found our rhythm. When I eat out, I can usually tell if I’ll have to read the menu for Sam, or if the menu is printed in such a way that he can decode it with his handheld magnifying glass. Jeśli oglądamy razem program i w telewizji wyskakuje tekst, czytam mu go na głos, nawet nie myśląc. (Fair warning, I have this habit, I read it very aloud, even though I am watching TV with someone OTHER than my husband.) Sam may still mow the lawn, but I try to get out before he’s finished so I can point all the places it has lost before the mower is put down. However, it is easier for me to finish and bead.
Find ways to help
I think the best way to help Sam is to simply offer to help. I don’t assume he needs help. If it looks like he’s struggling with something, I don’t just jump and take control. I’m just asking if he needs help. I also try to perceive situations or environments as they arise. Let me know if I see a broom leaning against a wall or a shallow and not very visible step. If we meet a friend, I greet him by name so that Sam knows who is there too.
Adaptation to vision loss
So my best advice to someone learning how to help a loved one with a visual impairment? Don’t take care of him, he can still do almost everything he did before, maybe just a little bit different. Be patient and learn to adjust to vision loss, especially when it is new, it can be frightening, frustrating and time-consuming. Expect a few grumpy moments and “I don’t need your help!” crooked. And have a sense of humor because life is more fun when we can laugh together.
Posted May 29, 2018 | Last updated June 20, 2019
Most people can tell you that one of the hardest things to do is be 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’s a 24/7/365 job. This is difficult enough for sighted parents. But how do blind or visually impaired people behave when their children see? This certainly makes it much more difficult. This does not mean that it is impossible. There are many resources available to assist blind and partially sighted parents through all the trials and tribulations they may face. I, as a blind person and a parent, cannot give advice, however I can provide great online resources that will hopefully alleviate some of the anxiety you may be experiencing in this situation. Here are some great resources on blind parenting.
Blind Parenting: A Material Guide
There are many Facebook groups made up of blind and visually impaired people. The best advice comes from crowdsourcing, and Facebook is the best way to reach that crowd. The groups range from tens to thousands of members. The groups listed here will only come from those with more than 500 members.
[Editor’s note: The post below is fromWhen You Have a Visually Impaired Student in Your Class: A Teacher’s Guide, edited by Susan J. Spungin and available from AFB Press. More details at the end of this post.]
Will you have a visually impaired child in your class this year? People who work with children with visual impairments, regardless of whether they have other disabilities or not, will find the following basic tips to help you interact with your students:
- Be aware that the child looks more like other children than different from them. Talk to your child about their interests and experiences and expect them to follow rules appropriate to their level of development.
- Always warn a visually impaired child when approaching or moving away. Identify yourself by name, especially if the child doesn’t know you well. Never have fun making your child guess who you are. This can create confusion, fear or frustration for the child.
- Briefly describe aspects of the environment that may be important or interesting to the child that the child does not see.
- Always ask before providing physical assistance. If the child does not understand the words, offer help with your hand or arm. If your child doesn’t know you well, only touch them on the hands or forearms as you may be touching another person in a social situation. Book hugs and close physical contact for children who know you well, especially if they are older than preschool age.
- Use words like “blind” or “blind” in your normal conversation with your child, but only when they are relevant to the topic under discussion. You can use words like “see” and “see” as you would any other child.
- When walking with your baby, encourage him to hold his hand near or above the elbow and to use a cane if he has one. A small child can hold the wrist or index finger. Discourage holding hands as a travel aid; help your child understand that this is a way to express feelings and that it is different from a travel aid.
If your baby has hearing loss, some aspects of caring for a baby can be a bit challenging. Here’s what to expect and how to help your baby grow at his pace.
Before your newborn leaves the hospital, he will be given a quick and painless hearing test. Although most babies hear well, the American Academy of Pediatrics estimates that up to 3 in 1,000 babies are born with some type of hearing loss. The risk of developing hearing problems is higher – 4 in 100 – in those who spend time in the neonatal intensive care unit. “It could be due to oxygen deficiency or assisted ventilation, exposure to ototoxic drugs [harmful to hearing] or hyperbilirubinemia [jaundice] that required blood transfusions,” says Jori Weingarten, audiologist at Nationwide Children’s Hospital in Columbus, Ohio. . Even so, the American Speech-Language-Hearing Association (ASHA) estimates that more than half of all neonatal hearing loss is due to an inherited genetic disorder.
General newborn hearing screening has become a state law in hospitals. If they become aware that your child has a hearing problem, an ENT or ENT specialist will review your medical options. In severe cases, a cochlear implant can be surgically inserted into a baby’s inner ear to restore his ability to hear sounds, but a baby must be one year old to undergo this procedure. As a great language acquisition tool in infants during the 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.
Diet. If your baby has a hearing aid, you may hear feedback while breastfeeding or bottle feeding if something is blocking the microphone. “The snail [attached to the hearing aid] can detach when the baby’s ear is pressed against mom or dad while he is breastfeeding,” explains Weingarten. “Runaway sounds are picked up by the device’s microphone and then amplified, creating a high-pitched hissing sound.” This high-pitched noise is more irritating to you than to your little one. You can turn off your hearing aid or remove it if the sound becomes too unpleasant.
Sleep. To help develop speech and language, your child should wear a hearing aid for at least six to eight hours a day. “The standard rule is that hearing aids are worn during waking hours to give babies maximum exposure to sound,” says Weingarten. Take off your hearing aids when your baby takes a nap and when you put him to bed.
Reaching milestones. Children with hearing loss are more prone to problems with language and speech, so early diagnosis and intervention are key. When your baby is diagnosed, you should be informed about early intervention programs in your area (if not, talk to your pediatrician). These free programs are covered by the Disability Education Act (IDEA) and include speech therapy. Research shows that children with hearing loss who start early intervention programs before 6 months of age develop language skills (spoken or sign) on an equal footing with their hearing peers.
Baby Sign Language is used to support early communication by parents whose children have normal hearing and by parents whose children have hearing loss. The signs have been adapted and modified from the American Sign Language. “The more opportunities you give a hearing impaired child to build their vocabulary and learn to communicate, the better,” says Weingarten. So, while you don’t need to use sign language to communicate with your child, it can help improve your child’s language skills. Another way to make it easier for your child to learn the language is to make sure they both see and hear what you say. This doesn’t mean speaking out loud or making exaggerated sounds. Come face to face with your baby as you talk and make eye contact. If necessary, give him a light pat on the back or wave your hand to get his attention before speaking. Communicate expressively with your baby – use hand gestures and facial expressions and show your feelings by hugging, touching and smiling.
Remember that you don’t have to navigate alone for the first year of your baby’s life. Il tuo pediatra, otorinolaringoiatra e consulente per l’intervento precoce possono aiutarti a learn a prenderti cura e a comunicare con un bambino con problemi di udito.
All content on this website, including medical reviews and any other health information, is provided for informational purposes only and should not be considered a specific diagnosis or treatment plan for any individual situation. The use of this website and the information contained therein does not create a doctor-patient relationship. Always ask your doctor for direct advice on any questions or concerns you may have about your own health or that of others.
Blindness or visual disturbances can make a huge difference in your life, but you are still in control. We have a wealth of information to help you, whether you have a visual impairment, vision loss or know someone who has vision loss. Explore these resources and learn how to continue living a healthy and productive life with vision loss.
Resource for living with blindness
Eye Disease Guide
A brief overview of the conditions that cause blindness or visual impairment.
Are you losing your sight?
VisionAware ™, currently operated by a US printing house for the blind, is a comprehensive resource for basic vision adjustment information, including tips on regulating your home and everyday life. There is also extensive information and support for seniors who are blind, as well as their family members and guardians.
For parents of blind or visually impaired children
Originally created by AFB and the National Association for Parents of Children with Visual Impairments, FamilyConnect® offers an informative and interactive community for parents of children with visual impairments, with resources to help them transition from childhood to adolescence.
Use of technology
A summary of technology issues for the blind and visually impaired, including the acclaimed online technology magazine AFBAccessWorld®which offers unbiased reviews of popular and assistive technology products for people living with vision loss.
For job seekers
CareerConnect® is your guide to working as a blind or visually impaired person. Learn from the experts about career discovery, job search, hiring and workplace success.
An overview of braille and literacy, resources for finding braille publications, and the Braille Bug®, an interactive website for kids.
This section was written based on what our parents told us they would like to know. Contains practical advice, ideas and contacts for parents and families of children with visual impairments.
Your baby and the visual defect: the first steps
We know this is a disturbing time – there is no “normal” reaction to the discovery that your child has a visual impairment – people react in different ways. Here you will find important contacts and information that will guide and support you in these first steps.
Our information and advice for parents is also available in a downloadable brochure for those who prefer offline or printed materials:
Visual impairment information: a guide for parents.
Start 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. Start point is given to families in eye clinics.
If you are a professional who would like to distribute the Start point leaflet to families you support please contact Guide Dogs at [email protected] to order copies.
There are many ways you can encourage your baby to be independent and help him move more confidently, start taking care of his needs and feel more confident at mealtimes. Your child may need to learn skills that others do by imitation, and we will tell you about people who can help you.
Science and school
Children with visual impairments are entitled to learning assistance from birth through a specialized teacher called QTVI. If your child has complex needs, he usually gets support in a special school within the local authority area – find out more about education and learning.
Find out about financial support, scholarships and allowances for families of children with visual impairments.
We have counseling and guidance for young people moving from school to higher or higher education, employment services and support for adults. Find out more in our section on youth.
Feeding and weaning
Eat and drink independently
As a carer or family member of a blind person, you may be eligible for benefits to help you and the person you care for
Books, games and toys
Find out more about toys and games
We are here for you
La nostra linea di assistenza è la tua linea diretta con il supporto, i consigli e i prodotti di cui hai bisogno per affrontare il futuro con fiducia. If you or someone you know has eye disease, our vision loss counselors can help.
The student walks with a cane in one hand and the other on the teacher’s shoulder as a guide. Another student also follows them using the guide stick.
There’s no “secret” to interacting with people who are blind. They just want to be treated like everyone else, with courtesy and respect. Since 1829, Perkins has been teaching children with visual impairments the skills necessary for independence and self-confidence. We do this on our Massachusetts campus and around the world. Find out more about what Perkins does here.
Here are six tips to make your next interaction with a blind person more respectful and comfortable for you:
While not all of these tips are appropriate for social distancing today, we are all waiting for a moment to offer help in the future.
- If you think a blind person might need help with navigation, 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 are giving that person a chance to accept or decline your help. “
- If your help is accepted, offer your arm, tell the person you did, and let them grab your arm just above the elbow.This makes it easier for a person to feel your movements and follow them on their own terms.
- If you see a blind or visually impaired person in immediate danger, warn them calmly and clearly. 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.
- Introduce yourself when you approach or enter a room with a blind person. Even if the person has met you before, they 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. Questi cani sono impegnati a guidare i loro proprietari e a tenerli al sicuro. Distracting them makes them less effective and can put their owners at risk.
- Prendi in considerazione l’utilizzo del linguaggio "prima le persone" e tieni conto delle preferenze personali. While Perkins often uses the language “people first” (ie “blind person” rather than “blind person”), many use the word “blind” to describe themselves freely and proudly. He respects the person’s preferences and learns about the work you do to separate speech from negative associations 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 vision loss. For more information on the different types of blindness, read here.
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