When Mum and Dad can’t see: how visually impaired parents raise their children

Audio description: This is a black-and-white photo. A man’s and woman’s left hands are joined in a handshake, and one of the hands has a ring on a middle finger. The wrists of both hands are being gripped by a child’s hands.

Marriages between visually impaired people are fairly common, which means that families where both parents are blind are not that rare. In the modern world, they get the opportunity to raise normally sighted children. We have interviewed blind mothers and fathers, and found out how they cope with the challenges of parenthood.

New person – new responsibilities

The birth of a child is an major event for any family. According to Elena Fedoseyeva – teacher at the House for the Deaf-blind and journalist, – visually impaired people are faced with the same difficulties as others: the acceptance of a new status, inevitable changes in the daily routine and lifestyle, new responsibilities, sleepless nights, bathings, feedings, the nightmares of teething, colic… Elena knows all this from her own experience as she has a son, Konstantin, who is nearly two years old.

Considering such massive changes, she believes that not so many specific difficulties arise for the visually impaired. “Blind parents will have no problems coping with baby hygiene, feeding, clothing and playing games. But, obviously, some actions require adaption. For example, sighted parents use a thermometer to measure water temperature while the visually impaired have to rely solely on their own senses (it’s best to use an elbow to check water temperature). When pouring milk or feeding formula into a bottle, sighted parents measure the amount using the measuring marks on it, but the visually impaired use measuring glasses, special sound devices or even just a clean fingertip,” says Elena.

She cannot do without assistance from sighted people when cutting her son's nails, monitoring the state of his skin, reading books, visiting doctors and playing outdoors. “It's not hard at all to stroll and wheel your baby's pushchair outside your home, but it seems unrealistic to me to keep an eye on a 18-month-old toddler who is rushing about a playground,” she adds.

Audio description: This is a black-and-white photo showing a baby's foot in the palm of an adult.

The preparation of Elena's home for the new arrival was not any different for her family. The baby was allocated certain drawers and shelves, and everything necessary was bought. When the boy started crawling and walking, his parents purchased special stoppers and latches for room and cupboard doors. Also, they covered furniture corners with soft protection pads. “While I was with my baby, I always tried to be in tactile contact with him – touching his leg, arm or shoulder – to be ready to catch him at any moment and prevent him from falling. I worked as a children's masseuse for many years, and this tactile control of my baby became quite natural for me,” says Elena Fedoseyeva.

Elena's ample experience in working with babies led her to the conclusion that you should not suppress the natural development of a child. In other words, you should help, but not force too much the development of their physical skills. “I've always supported, my child's natural physical activity: I let him crawl as much as he needs, run when he wants or go under tables – it’s always better than doing some complicated physical exercises. Tactile contact with his mother, hugging and stroking – this is a great natural and most productive version of children's massage. I love and always recommend exercises with a child on a gym ball – they are very easy and accessible to visually impaired parents,” says Elena.

She and her son love constructing things from building blocks, playing with a toy railway and modelling dough. “As for books and toys, I have to memorise the pictures and colours to convey information to my child. In those types of pastime activities where I'm on my own with my child, I use sorters (frames into which you insert different shapes) and books with large one-piece puzzles,” pointed out Elena. She also added that they still have difficulties with drawing so she passes these activities on to her sighted assistant.

Elena likens the time spent in the maternity ward to that of a health resort, but her relationship with the district paediatric specialists is based on a principle of mutual indifference. “Whatever questions I've got, I ask to the doctors I used to work with, but, of course, I'm grateful to our district general paediatrician for regular check-ups, keeping our medical records and prescriptions for free baby food,” says Elena.

She put her son on a kindergarten's waiting list using the state services Internet portal. However, to do that, she needed help of a sighted person since the website is poorly voiced by screen readers.

Easy solutions to difficult problems

The first person who comes to the rescue in everyday care for a baby is usually their grandmother. It is true both for the sighted and visually impaired. This was how it was in the family of bloggers Anna and Mikhail Nivnya, of Odessa. They have created a YouTube channel Fascinating Routine, where they tell stories about everyday life of the visually impaired. Six years ago, little Vanya arrived in their family and considerably changed their everyday lives.

According to Anna, the child's grandmother took upon herself the most difficult thing for visually impaired people – going for walks with the child. “I'm not talking about the first year of a child’s life – you can carry your baby in a sling or special backpack if you want. This is what we used to do sometimes. We also know that some visually impaired people use a pushchair: they wheel it behind them rather than push it. The most difficult period is the second and third years of a toddler's life since the child can already walk, but still doesn’t understand that they mustn’t run away,” says Anna.

Apart from this, the grandmother teaches the child to write and draw. “Without these activities, the child’s development isn’t complete, and the parents can't teach him, help him or correct him in any way. My Mum helps us with this. Vanya loves drawing and writing with his grandmother,” pointed out Anna Nivnya.

Audio description: This is a colour photocollage. Against a purple background, there is an open laptop, with a colour photo on the screen. In a room, a man and woman are sitting on a sofa, and both are in dark glasses. The man has short chestnut hair and is dressed in jeans and a blue jumper. The woman is wearing jeans and a yellow jumper. Her shoulder-length hair is light-brown. They are Mikhail and Anna Nivnya.

According to Anna, it is a very difficult time when a child starts putting everything in his mouth and tries to get into places he shouldn’t. His visually impaired parents constantly want to touch him to make sure that he is alright, but the child can get irritated with this type of control. “You just need to go through this period, and you can do it on your own, without assistants,” believes Anna.

For Vanya’s safety, when he was still very young, his parents fitted safety covers on mains sockets and silicone pads on furniture corners. Also, they installed security grilles on all their windows: “We live on the eighth floor, and, in summer, we like to keep our windows open. From that point, we didn't have to worry about our son falling out a window anymore.”

As the child grew up, the safety devices were gradually removed so now only the grilles are left. “We no longer fear that our child will swallow some pill or colour up an important document. On the contrary, now he can say: “Mum, you forgot your pills on the shelf!” adds Anna.

In terms of special devices, the family uses talking thermometers for body, water and air, as well as talking scales. However, they play the most ordinary games. Vanya loves playing tag with his father, wrestling with him and constructing something from Lego or doing small repairs. With his mother, he likes playing guessing words, counting objects, clay modelling or building toy houses. As a family, they often solve riddles or play the game Name That Tune.

Also, either his mum or dad frequently read Braille books to Vanya. “We read every evening. We started with Russian Fairy Talesand are now finishing The Wizard of the Emerald City. We have greatly enjoyed The Golden Key, Emil of Lönneberga, The Adventures of Dennis, Dunnoand many other books. And, of course, we both love talking to Vanya about this and that,” said Anna Nivnya.

Striving for independence

Among the visually impaired, there are also those who attempt to do everything by themselves and not count on any assistance. One such example is Yevgeniya Yevstafyeva, the mother of 18-month-old Vyacheslav from Moscow. According to Yevgeniya, she and her husband are coping with everyday life perfectly and only need help with getting around the city.

“I decided for myself when we were planning to have a baby that I wouldn't use assistants. We have a guide dog so we thought that the dog would help us take our child to kindergarten. But then we decided against sending our son to kindergarten. For his social interaction, we thought that, at 3-4 years of age, we would start taking him to various children's activities, for example, to learn English and swimming,” says Yevgeniya.

From the moment their son was born, she took everything in hand: “When we first returned home from the maternity ward, my husband suggested asking someone to cut our baby’s nails. He had no idea how it was going to be done. I said it was our son, and I wouldn't entrust him to anyone's care.”

According to Yevgeniya, Vyacheslav has a grandmother and an aunt, but the parents rarely ask them for help. “Up to a certain point in time, I used to walk with my child alone – I held him by his hand or hood. But when he learned to run, I realised that I should seek help from assistants who accompany the visually impaired around the city. Then I met another mother outside our block of flats, who offered to help. She has small children, and she takes my son for a walk while they're in kindergarten,” pointed out Yevgeniya.

Yevgeniya has asked social services for an assistant who would walk with her child – she was prepared to pay someone to accompany them outside. However, she was told that they were unable to offer such a service. “They said that they accompanied old people and walked dogs, but wouldn't be able to walk with my child even if I was present,” added the young mother.

Sometimes, she is helped by sighted people to check her son over or choose things for him. “We have ordinary toys bought in regular toy stores. I read a description on the Internet, and if I need some help, I use the programme Be My Eyes. I also have a sister, who's always available on WhatsApp and Skype,” says Yevgeniya.

Like many other young parents, she was worried at first that her son would choke on food or find something dangerous and swallow it. However, over time, she started to worry less about it: “I was also scared. I've read lots of books on the subject and used to follow him everywhere. But everything's fine now, you get used to listening out all the time and imagining what he's doing. Probably, you just shouldn’t drive yourself mad and get frightened – what is to happen will happen.”

Since children always copy adults, in families with disabled people they pick up some peculiar habits from their parents. “I think that children feel from the earliest age that their parents are somehow different. On different occasions, when we were preparing for a walk with our son, he would take his father’s cane and start tapping it on the floor in the hallway, like the visually impaired do,” said Yevgeniya Yevstafyeva.

When Vyacheslav was born, doctors in the maternity ward had questions for his visually impaired parents. Some of the doctors were unable to comprehend how the parents were going to cope with the baby. Immediately after Yevgeniya gave birth, she was not allowed to feed her son for a long time, which had bad consequences for breastfeeding – the problem had to be solved with the help of specially trained consultants. Even when being discharged from hospital, she was told to use a separate exit, not the one that the other mothers used. Yevgeniya looks at this situation philosophically though.

Audio description: This is a colour photo. On the ground, there are the legs of an adult man and of a boy of about five. They are both wearing jeans and boots.

Problems with social services

The Cherenev family, who welcomed a baby daughter named Sofia a year and a half ago, had to encounter an even more irresponsible attitude of medical staff. At the time, their story became known nationwide. Journalists had to be involved to ensure that the baby girl was not taken from her new parents. The girl's father Ivan Cherenev – sound director of the Internet radio station of the All Russia Association of the Blind (VOS) – told us his story.

According to him, the staff of the maternity ward in a small town near Moscow were scared to discharge the baby to a family where both parents were visually impaired. The Family Code of Russia says that, if life and safety of a child are in danger (and the doctors decided it was the case), the guardianship authorities can withdraw the child from the family until the court makes a ruling. After that, the child can be returned, but the withdrawal itself will still take place – the baby will be taken from their mum and dad, and will be placed into a temporary holding centre for an unspecified period of time. That is what the Cherenevs were afraid of.

“We were told in the maternity ward the following: since there were two visually impaired parents in the family, we would be unable to look after our daughter, and this constituted a hazard to her health and safety. At first, they didn’t want to discharge us from the maternity ward and later warned us that they were filing a report with the guardianship authorities,” said Ivan. He added that the media coverage of their case helped, and the guardianship authorities left his family alone. They have not experienced these kinds of problems since then.

Due to this story, Ivan had to thoroughly familiarise himself with the topic of interrelations between the guardianship authorities and juvenile justice. Parents with disabilities have been deprived of their children on a number of occasions – it has happened to wheelchair users and, just recently, to a hard-of-hearing person. According to Ivan Cherenev, current wording of the law leaves all parents in a vulnerable situation. “It says that leaving a child unattended constitutes a dangerous situation. But what does 'unattended' mean? You leave your child in this room and go to another – this is already a dangerous situation, and your child can be withdrawn,” he explained. Ivan also added that there could be numerous reasons – from lack of fruit in your fridge to a dark-coloured wallpaper. If necessary, anything could be interpreted as unfavourable conditions for bringing up a child.

Assistance gadgets

Today, the Cherenevs are focused on solving routine problems around raising their daughter. According to Ivan, the most difficulties arise – similar to other visually impaired parents – when they go for walks with their child. “While the child is small, she can somehow be controlled. Then the moment comes when she can't yet speak properly and express herself, but the parents can't hold her hand all the time – so it becomes difficult,” he says.

If your child has been absorbed with a game in a playground, they can be easily found with the help of special devices such as a sound beacon. “It consists of two parts, one of which is placed on the child – it’s a small teddy-bear, – and the other is a remote control, like that for a car. The remote control has a button, and, when you press it, the toy on the child starts beeping and glowing. So we'll always hear where she is,” said Ivan.

Also, you can find sighted assistants even if your relatives and friends live far away. “We have friends, who made an arrangement with some elderly women who were constantly sitting in their playground anyway. For a small fee, the women agreed to watch over our friends' child for an agreed time,” pointed out Ivan Chernev.

He believes that the problems are even easier to solve. For example, during the first months of the baby girl’s life, when she had to be under constant supervision, their family greatly benefited from simple gadgets. “When we first returned home with our baby from the maternity ward, we video called our parents twice a day. And, obviously, during the first few weeks, a health visitor comes frequently to check up on the baby,” he said.

Now that their daughter is a little older, her parents have to explain to her some things that are difficult for blind people – such as colours. However, the parents have also found a simple solution. They use talking toys that pronounce the names and colours of objects, and they use playing cubes of different colours and textures: all they have to do is memorise which colour corresponds to which texture and use this in games.

Also, advanced technologies help to read to the child. “There are books based on NFC technology, for example, the Magical Pencilseries, where you touch a page with a certain tool (a pencil), and it reads what is written there. It can be excerpts from fairy tales, descriptions of animals and so on,” said Ivan.

Help from the state

Russia has numerous laws aimed at helping families with disabled parents. Families are entitled to a number of benefits and payments. In particular, such families get reimbursed for some of their transport and utility expenses, receive tax breaks, benefit from a reduced working week and increased annual leave. They are also entitled to council housing and a plot of land on a short waiting list.

Also, regional standards provide them with additional welfare benefits. In Moscow, for example, 12,000 roubles is paid monthly per child to those parents who are disabled persons of groups 1 or 2 and are not working. If the family has a low income, they are paid 10,000 roubles per child below the age of three, and after that – 4,000 roubles. In addition, there is a small allowance to compensate for an increase in the cost of living – 600 roubles. Other regions have their own benefit levels.