Taking three families…

Bringing up children is pretty demanding at the best of times. But how do you manage if your sight and hearing is impaired? Jenny Lunnon spoke to three deafblind parents to find out about the particular challenges they faced and what they shared in common.

Like all parents, people who have hearing and visual impairments find having children a life-changing experience, at times stressful and exasperating, at others joyful and astonishing. You can’t generalise too much about the experiences of deafblind parents, since so much depends on the nature and severity of their condition and a myriad of other factors. Having said that, certain themes and issues are commonly faced, especially for those parents with Usher syndrome.

The first big question many face is whether to have children at all. Usher syndrome is a genetic condition which can be passed on to the child by the parents. So couples will have to think carefully about whether to have a child and many prospective parents will consult a genetic counsellor.

Many parents are also perhaps concerned about how they would be able to cope with a young child, given their sight and hearing difficulties. Will they be able to keep them well-fed, clean, healthy, and safe? Will they be able to communicate and bond with them?

Then having decided to go ahead, pregnancy can be a challenging time for a deafblind mother-to-be as she seeks support from health and social workers, who may have no experience of a woman with her needs. She may require an interpreter at ante-natal classes, hospital appointments, and during labour.

After the birth, both parents have to learn to meet their children’s rapidly changing needs, from the newborn’s constant round of milk, clean nappies, and cuddles to the toddler determined to explore and experiment. Special gadgets and considerable ingenuity and vigilance may be needed to keep them safe and healthy.

As the child grows

As the baby becomes as toddler, and the toddler becomes a child there are other challenges to face. It may take the child longer to learn to speak for example, especially if both parents are profoundly deaf. But problems can be resolved with speech therapy and other support.

Shared activities such as play, sport, holidays, and family celebrations may also require adaptability and lateral thinking, so everyone can enjoy them to the full. Finding a suitable nursery and later school for the children will require research, and, often, raising the deafblind awareness of teachers. Simple ideas like a school/home diary and homework in an enlarged format can enable parents to support their children’s learning.

This may sound a rather daunting list of challenges to face, but then most people will find parenting a steep learning curve – disabled or not. All of the parents we spoke to had to battle to get the right help, and all had to face difficult challenges at some time. But none regretted their decision, and they all spoke warmly about the joys and rewards of being a parent.

Story 1

Tamsin’s story

Tasmin Wengraf-Townsend is mother to three children – Talitha (8), Jemima (6), and now Leon (13 months). She’s had to battle for the right help sometimes, but bringing up three children has been a joy.

Tamsin always wanted to have children, but it wasn’t that straightforward because she Usher syndrome type one. This means that she was born deaf, has partial sight and uses British Sign Language (BSL) to communicate. Her husband, James, is also deaf

“I was one of three and I wanted to have three children too, “she says. “I was quite fortunate though because my vision is not that bad and I thought I could cope with having a baby. I had siblings who were eight and twelve years younger than me, and family friends with children – so that gave me confidence. “

I did have worries too though. At the back of my mind I was wondering ‘What if my baby has Usher? I was just hoping that it wouldn’t happen – and luckily it was OK.”

Preparing for birth

Before her first child, Talitha, was born, Tamsin attended a mainstream ante-natal class, with an interpreter. But she found it too big (there were 30 couples) and that the information provided duplicated her own reading. So during her second pregnancy she contacted the National Childbirth Trust and attended their ante-natal classes. These were smaller, more interactive and involved six couples which allowed the sharing of experiences. The philosophy of the NCT, with its emphasis on parental choice, suited her better.

She did face challenges though: “I insisted on having a sign language interpreter for every ante-natal appointment. To start with I had to fight because some appointments – like those to check blood pressure, were only 15 minutes long. But I thought it wasn’t fair not to be able to ask questions if I wanted to. In the end I got there.”

Experiences of labour

Tamsin was disappointed by the way she was treated while she was in labour with Talitha. She was told to lie down even though she wanted to move around. Her second labour, with Jemima was much better and she felt more in control.

Unfortunately the third birth – of her son Leon, was not such a good experience, because the specific midwives she had requested were unavailable. So she was allocated a duty midwife who did not know how to communicate with her. “I was in so much pain but I couldn’t explain my situation,” she says, “ so I had to leave it to my husband, who explained that I wanted to stand up to give birth. In the end I gave birth in the way I wanted.”

Home with the baby

Coming home with a new baby is a very exciting and daunting time for any new parents but Tamsin and James gradually got the hang of it. She breastfed all her children and found, with practice, it was possible to feed them at night without turning the light on. She kept the two younger babies in bed beside her because she believes in the ‘three in a bed’ approach.

She also found her portable vibrating pager invaluable because it enabled her to hear when her babies were crying. She preferred this to the flashing light system, because she found it difficult to see the lights during the day.

For parents with a visual and hearing impairment the time when children start to crawl and walk can be a particularly challenging one. “Our second daughter was crawling at six months,” says Tamsin, “so we had to put guards up wall to wall, like a fence, to keep her in. I was always watching and it was tiring on the eyes. A few times I’ve trodden on them, but not seriously. I walk slowly and give myself rules about how to walk around to reduce accidents. Léon was crawling at eight months old. He is so fast; it is hard work. I don’t like him around me when I’m cooking.”

Learning to communicate

Tamsin’s daughter Talitha started to sign when she was eight months old and Tamsin felt confident that her spoken English would soon catch up. Her speech was affected slightly by the fact that she had glue ear, but a speech therapist helped her practise the sounds she found more difficult. The glue ear eventually disappeared and now her speech is fine.

It also helped that Talitha and her younger sister Jemima went to nursery three days a week, because Tamsin was still working part time, and they picked up most of their speech there. “Léon isn’t speaking yet,” says Tamsin, “but he’s pointing, and does a lot of mumbling. His two older sisters talk to him a lot, and tell me what he’s saying!”

She has also noticed that her daughters separate their two languages. “They talk to us by signing and not using their voices. It’s strange because James and I use our voices, but they switch theirs off.”

“They learned signed language first, a lot quicker than they would have learned spoken language. Then around the age of two they realised that it’s easier to speak than to sign.” She found that the period of adjustment, while they got used to using one language with her and James, and another with hearing people, lasted about six months, and by about the age of three their signing and spoken language were both good.

Tamsin enjoys reading with the children: “James and I take turns to read a book to them every night. I think that has built a relationship between us. Sometimes they’d rather I spoke the words, because it was difficult for them to look at the book and sign, so I’d do both. I’ve got an awful voice but they seem to like it!”

Off to school

The school which Tamsin’s daughters attend has no BSL speakers and no deaf pupils, but she has found it broadly supportive. Before Talitha started school Tamsin met the headmistress to discuss how the school could best support her and her daughter. “I wanted to have a good relationship with the teachers so I could understand what was going on, so Talitha could develop as well as other children.”

She does use interpreters when she needs to speak to the teachers and uses a communication book, similar to a diary. Having spoken to other deaf parents, she knew that sometimes their children could manipulate the situation to their advantage, for example, by pretending they didn’t have any homework! “I wanted to make sure I had the whole picture,” she says.

She would like to see the school make a greater commitment to deaf awareness training for both teachers and pupils. They have already done some of this with pupils, with the aim of preventing bullying. “The awareness is to show them it’s OK to be different.”

Come the weekend, Tamsin and James enjoy doing all the normal things with their kids. They enjoy taking their children to National Trust houses and museums but Tamsin finds that not being able to drive limits what she can do alone. Going to London on public transport with three children, is difficult for example. Most Tube stations have lots of steps, making it hard with the pushchair, and she also worries about losing the children, although since her daughters were young she has given them rules to keep them safely at her side.

Good experiences

Before they had children, Tamsin and James spent two and a half years travelling around the world, starting with an epic overland trip in a VW van across Europe, Turkey, Iran, and Pakistan to India, with two other couples (they were all deaf). Tamsin said: “I’d like to travel with my children when they’re older. That would be my dream, going to South America.”

Tamsin attributes her generally positive experience of having children partly to her previous work experience: “I was a Citizens Advice Bureau advisor, I knew my rights as a deaf person and I could fight for what I needed. So I knew I could require an interpreter or a specific midwife. Some women with Usher might not know their rights.”

She also has a good knowledge of the National Health Service because for a time she was a Patient and Public Involvement Co-ordinator. PPI groups were set up country-wide to enable users to voice their concerns about their local health service. “Deaf people with Usher have a lot of complaints,” she says, “especially about there not being enough interpreters, and staff having a bad attitude. A lot of work still needs to be done with schools and the health service to improve their awareness of people with Usher. It’s still very poor in some areas. Unfortunately the government is going to scrap PPIs next summer.”

What is Tamsin’s advice to prospective mothers? “Speak to other mothers with Usher and realise you can do it yourself. Just do some research to see what your options are, and make sure you have a partner who is going to support you. I think I’m pretty much the same as any other parent – just a bit more careful.”

“Having children is really rewarding. They adapt to situations more easily than adults. Don’t think there’ll be barriers – you can overcome them. Probably the most difficult time is when they’re toddlers. But once you get through the toddler stage, you’ll be fine.”

Story 2

Catherine’s story

Catherine Field has two beautiful daughters, Elizabeth, aged 8 and Jennifer, aged 5; who are doing well at school, making friends and enjoying life. But it hasn’t always been easy for this mother to create the kind of family life she dreamed of. 

Catherine and Simon Field thought long and hard before deciding to have children. Catherine has Usher type 1 which means, in her case, that she was born deaf, has a serious visual impairment and communicates using BSL/hands on signing. Simon, her husband, is also deaf.

Both have a history of deafness in their families and Catherine’s family also has a history of sight problems. They consulted a genetic counsellor who calculated that there was a 50% chance that their children would be deaf and a 25% chance they would have Usher. “We had a very serious discussion and decided that, yes, we would go ahead and have a family” says Catherine.

Support from her GP

Catherine’s GP put together a team of health professionals to support her through her pregnancy and the birth. This continuity of care was very important and enabled Catherine to teach them about deafblindness. They learned guiding skills, how to communicate through interpreters, and ways to adapt the hospital environment – for example, by turning up the lights so she could see the scanner screen.

Instead of ante-natal classes Catherine had one-to-one support at home with a midwife. She also visited the maternity unit beforehand. “I wanted to understand where everything was so I could develop a mental picture and feel more secure” she says.  She was allocated her own, adapted room.

For medical reasons, both Catherine’s daughters were born by Caesarean section, under local anaesthetic: with an interpreter on hand in the operating theatre. “I remember the excitement of it because I wanted to know the sex and if the baby was alright. We were both really on a high” recalls Catherine. The birth of her second daughter, Jennifer, was easier. “It was like a reunion! Everyone was brought back and they were already prepared. It was a wonderful experience.”

Most mothers stay in hospital for just a day or two after the birth of their child but Catherine stayed for nine days each time, learning how to care for her babies and bond with them. She tried to breastfeed but because of her visual impairment found this difficult, so switched to bottle feeding.

She struggled to bathe her baby in a conventional bath so instead used a “flower pot” bath (now available from Mothercare) where the baby can sit upright. Changing her babies’ nappies was also tricky: “It was very different from the doll I practised on because the baby was always kicking, never still, and I couldn’t tell which was the front and which the back.”

A tough time at home

Having left the supportive environment of the maternity unit, Catherine found the first weeks at home with Elizabeth very tough, and social workers were slow to respond. “I couldn’t go out of the house alone and needed full-time support just to do the usual things – buying milk and nappies, getting some fresh air, or going to the doctor”.

Eventually – after a lot of delay and wrangling – social services agreed to fund a Communicator-Guide for 19 hours each week. And when Elizabeth was a year old she went to nursery and Catherine returned to her work as a part time teacher of deaf children. But the difficulties piled up. Unfortunately her daughter had medical problems and Catherine had to take time off work to take her to the doctor and hospital – and her employer, the head teacher of a mainstream school, was not supportive. Her parents and mother-in-law helped out when they could, but they lived far away and her husband had to work long hours, sometimes six days a week.

By the time Elizabeth was two the pressures of the situation had caused Catherine to become seriously depressed so she had to take sick leave. After lobbying from her GP social services increased her communicator-guides hours to 40 per week, which helped enormously.

Communication issues

Meanwhile, Elizabeth was learning how to communicate. Because Catherine and Simon are deaf, their children’s mother tongue is BSL. Elizabeth made her first sign, for ‘sleep’ – at the age of eight months, but did not begin to use her voice until she was 18 months old. The nursery staff developed her spoken language, as did Catherine’s communicator-guides. However communication sometimes broke down between Catherine and her daughter, who had got the idea from nursery that everyone could speak.

Because of this problem with signing and because she was aware that Elizabeth’s spoken English was less developed than was normal for a child of her age, Catherine tried to get some help from a speech therapist, but this wasn’t easy. Social Services were far more used to supporting hearing parents with deaf children than the other way round.

An assessment showed that Elizabeth, at two, was a year behind in her spoken language. When a speech therapist from Sense backed up Catherine’s request for assistance, Social Services agreed to fund a speech therapist to visit every week for 18 months. While she was helping, communication became easier, but when the funding ran out problems arose again. Elizabeth heard Simon talking so she assumed he could hear too, and decided to communicate with her mother via him rather than by signing directly. (In fact Simon couldn’t hear but he could lip-read). This meant further communication difficulties between Catherine and her daughter. Eventually, however, Elizabeth became fluent in both languages, as did her younger sister.

As her children grew up, Catherine noticed some interesting differences in their personalities: “When Elizabeth was seven months old and trying to crawl around, she seemed to know I couldn’t see her properly and she would tap my leg to let me know where she was. She was gentle. Jennifer was more direct and more forward; she would just grab me and walk off. She’d pull my hands and touch things. If there was spilt milk she’d put my hand in it just to show me.”

Choosing a school

Catherine was keen that her daughters should continue to be bilingual and chose the school they now attend partly because the reception teacher was trained in BSL. She has gradually developed the deafblind awareness of all the teachers and has a good relationship with them. They understand that it is easier for Catherine to see them if they wear dark clothing, and send home letters and homework in 26 point bold on yellow paper so Catherine can help her daughters.

Elizabeth and Jennifer’s attendance at this school has resulted in enriching learning experiences for the other pupils. Initially they saw Elizabeth signing with her teacher across the classroom, and wanted to join in. “The other children absolutely loved it and copied Elizabeth in the playground. The BSL teacher realised that they were really interested and taught them the alphabet and some basic signs. When they became more confident they came up to me and signed. At birthday parties they would tap me and say ‘Good afternoon Mrs Field.’ Their parents were interested as well.”

Catherine’s deteriorating vision has limited her ability to undertake activities with her daughters, especially outside the house, unless she has the support of a communicator guide or other person. With their help she organises lots of art and craft activities, using her previous experience as an art teacher. She also loves to go swimming with her children. “We bond when we do that because I’m a strong swimmer. The communicator guide will be in the water translating and telling me what’s going on. I’m a water baby and have been since I was two years old. I feel free – no-one’s controlling me. I’m away and by myself and I’ve brought the girls up to be the same.”

Reflecting on her experiences, Catherine summed up what she would say to people with sensory impairments who are wondering whether to have children. “There is lots of pressure on deafblind people not to have children,” she says. “If you want children, it’s your responsibility. You have to be prepared to overcome lots of difficulties because it’s very hard, nothing is smooth. You need to be strong to cope with it all. You have to show initiative to go out and find the support that you need. You have to recognise the problems and issues yourself; Social Services won’t do it for you. And you have to make sure that your husband or partner is also prepared and fully committed. It certainly needs two people so you can work as a team.”

“But there are lots of happy and positive things. I see both girls are settled at school; they are bilingual and getting good reports. Sports day makes me really proud. Elizabeth represented the District in swimming backstroke. I went to see the race with a communicator guide and waved. She received a medal: it was fantastic and I was really pleased.”

At Easter the children learnt some signing songs as a surprise for Catherine. “Elizabeth kept quiet about it. I was absolutely amazed: all of them were signing, and they’re only really young children; it was a very big achievement. I was crying my eyes out. It was the first time I had full access to what was going on.”

Story 3

Des’s story

When Des Lucy’s sons were born he didn’t even know he had Usher 2. But a determination to get stuck in, and some sensible adjustments, he has loved his years as a father. 

Des’s children were quite young when he started having problems with his eyesight. He was born partially-hearing and used a hearing aid and lip reading – but he didn’t start to lose his sight until his early thirties, when his condition was diagnosed as Usher 2. In fact, he’d led a happy, ordinary life: marrying Diane, working on the railways (he’s now safety engineer for HSBC Rail in London) and becoming the proud father of three sons – Jonathan, Marc, and Jason (now aged 23, 21 and 19).

He thinks that his own fairly traditional upbringing has influenced the way he brought up his own children. “I tended to be fairly firm,” he says. “Because of my hearing problems I probably raised my voice more than most people. The boys would often say: ‘You don’t have to shout, Dad.’”

“I saw my role as breadwinner, though I helped where I could. Diane did all the caring part – keeping the children healthy and that kind of thing.”  When they were young she took a career break to look after them full time.

But his growing sensory impairments did make life difficult at times. He has bad memories of parents’ evenings for example: “I found them very difficult because they were always in a hall where everything echoed. The background noise was so bad that I couldn’t hear and I found it so embarrassing and frustrating. I had my own questions but I couldn’t participate and I got very upset. After three or four I just gave up.” Diane’s request that the teachers see them on a different occasion, in a smaller room, did not receive a positive response.

Embracing family life

Another difficult milestone was that he had to stop driving.  “The boys remember the time when I used to drive, with delight,” he says. However this has not stopped them travelling as a family. Diane took over the driving and they enjoyed family holidays in the UK. “I remember those as great times,” he says. “You shut yourself off from work and have family time together, and, although my eyesight had deteriorated to the point where I couldn’t drive any more, it hadn’t to the point to which I couldn’t play football with the kids.” When it became too difficult for him to move around safely on the pitch, he became goalkeeper. “I didn’t want to jeopardise the safety of the kids. But if you stop participating, then they feel you don’t want to play with them and be involved with them.”

Des can no longer play sports he used to love, including tennis, squash, and football. “But I have taken up golf over the last three to four years and encouraged the boys to come and join me down on the driving range. I don’t play brilliantly but I do enjoy it.”

They do lots of other activities as a family: sitting down to meals, walks in the park, watching TV together, and playing cards and board games such as Pictionary. Des enjoys comparing notes on the latest Harry Potter with his son Jason, as they read them simultaneously.

His sons are well aware that Des can’t see, and thus lip read, so well at night, or hear when there is a lot of background noise, and try to ensure he does not feel excluded. When they go out together they organise the seating so that Des has his better-hearing side facing other people and the window behind him, to reduce glare.

However, knowing that communication may be difficult can lead Des to opt out of going to the pub on a noisy Friday night, and to feel left out in certain environments. “One thing that has always been frustrating is when I have wanted to be with family and join in a celebration such as a wedding or engagement party. Whenever the disco starts the light dims, there is too much noise and I can’t see people’s lips. At Jason’s 18th birthday party we made sure there were lights on the tables. If you are running the show you can do it!”

Now Des’ sons are all grown up his role as a parent has changed as he supports and advises them on challenges they face as they go into the world: education, jobs, money, and relationships. “If they’re happy, we’re happy” he says.

Des’ advice to prospective parents is: “Don’t use any excuse not to have kids. If you say ‘it’s better not to do this’ you’ll stop yourself from having a life. Make the most of it! Live your life by the moment because you never know what’s going to happen. There’s no denying there are pressures, but we all have crosses to bear – its how you deal with them. I’m very fortunate. I have three good kids and good parents and a very understanding wife.

“Kids can be the best thing that can happen to you. They give you some direction in life, things to think about. There will be difficult times but the good times will outweigh the bad ones.”

Further reading

Disability, Pregnancy and Parenthood International: A Journal for Parents and Professionals (Disability, Pregnancy and Parenthood International)

Having a baby pack: H1. Planning, pregnancy and birth; H2 From birth onwards; H3 Useful resources for parenthood (DPPI, 2006)

Parenting with a visual impairment (DPPI Collated Article Series No. C4, 2006)

Deaf families (DPPI Collated Article Series No. C2, undated)

Pregnancy and birth: Guide for deaf women, Sabina Iqbal (RNID, 2004)

Pregnancy and disability: RCN guidance for midwives and nurses, Jackie Rotherham (Royal College of Nursing, 2007)

Useful contacts

The National Centre for Disabled Parents, otherwise known as Disability, Pregnancy and Parenthood International (DPPI) – The Disabled Parents’ Network: Web: www.disabledparentsnetwork.org.uk

The National Childbirth Trust: Web: www.nct.org.uk | Tel: 0870 990 8040 | Textphone: 020 8993 6714