Information for families with a newly identified deaf child

Information for families with a newly identified deaf child

You and
your
family
Information for families
with a newly identified deaf child
Our vision is of a
world without barriers
for every deaf child.
Contents
Who is this booklet for?
4
Early days – The first steps
5
Telling others
12
Understanding childhood deafness 14
Hearing technology
16
Communication
17
Play 18
Education
19
Useful equipment 20
Financial support
21
Other people you may meet
22
Questions you may have
28
How can NDCS help you?
29
Useful publications and contacts 30
NDCS uses the word ‘deaf’ to refer to all levels of hearing loss.
The information in this publication is also suitable for families whose
child has glue ear.
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Who is th
This booklet can be used by parents and the wider
family who have just been given the diagnosis that
their child is deaf. It is designed to offer support,
information and guidance on what to expect and
be aware of in the early stages of diagnosis.
It can also be used by professionals who work with
families with a deaf child, who will find it useful
to refer to during appointments and in a range of
different settings.
In creating this booklet we worked with families
who have shared similar experiences to ensure
that the content is accurate and relevant to your
needs.
Some children who have been diagnosed with a
hearing loss may also have additional needs. NDCS
works hand in hand with other organisations who
can offer support for additional needs to provide
similar guidance and support for any concerns or
questions around deafness.
We understand that this may not be the route
you expected. We want you to know that you are
not alone and that we will support you on your
journey so that you can celebrate and enjoy your
child as they grow up.
How to use this resource
When you’ve been told that your child is deaf you
may have lots of questions. This booklet gives you
basic information you may want to know when
your child is identified as deaf. It also tells you
which other organisations you can go to for more
information. If you don’t want to think about your
child’s deafness right now, put this booklet aside
until the time is right for you.
This booklet is intended to be used for reference.
Some of the information in it will be useful to you
now and some when your child is older. So use
it as and when you need to and refer also to the
NDCS website (www.ndcs.org.uk) and request
information through our Freephone Helpline (0808
800 8880) as your child grows and develops.
In all sections we’ve referred to other NDCS
publications for further information which you
may find useful. Some information referred to is
available on the internet. If you don’t have access
to the internet at home or at work, you should be
able to get access to it through a local library or at
an internet cafe. You could also ask family, friends
or your child’s Teacher of the Deaf to print out the
information.
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For some families when they are told their child is
deaf, the news can come as a great shock. Some
parents will be upset by the news, others will be
relieved that their suspicions have finally been
confirmed. Some deaf parents may feel confident
in the knowledge that they can share their culture
and experience with their child. You will have your
own reactions. There is no right or wrong way to
feel.
Parents may spend time in the initial period
identifying what steps they will need to make to
support themselves and their deaf child. It can be
difficult to remember all the information. Don’t
be afraid to go back and ask questions when you
have had time to think.
“I needed to understand what this hearing loss
was and how his ears were damaged. I needed to
know that it wasn’t my fault and what my options
were. When I got the information I started to
focus on the important things like communication
and not on who to blame.”
It is important to know that you are not alone.
A wide range of support is available, whether
this comes from family and friends, your local
community, services for deaf children, voluntary
organisations or other parents of deaf children.
If your child has other disabilities or illnesses, you
may already be in touch with other professionals
and organisations.
5
Your feelings
It is important that you take time to look after
yourself and, more importantly, acknowledge
how you are feeling. Your own health is vitally
important. The birth of a new baby brings with it a
combination of emotions. This can be equally true
for parents when they discover that their child is
deaf. For instance, grief is a healthy reaction to loss
and the strength of your reaction depends on how
big the loss seems to you. Parents have also talked
about having the following reactions:
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Surprise
Anger
Confusion Fear
Grief
Sadness
Comfort
Relief
Denial
Shock
Disbelief.
You may feel one or many of these reactions or
emotions strongly. Sometimes you may jump from
one to another through the course of a day.
“I never thought for a minute that she might be
deaf. I felt so guilty that I might have caused it.”
“At the initial diagnosis I had a terrible fear of
feeling powerless. Sadness lingers, yet since
the diagnosis as a family we’ve grown stronger
and are committed to ensuring only the best for
our child.”
Having a deaf child may mean that you have some
extra things to learn about, but don’t worry if you
have no experience of deafness. There will be
plenty of opportunities for you to find out what you
need to know.
“The audiologist talked to us for a while. I have
to admit that I didn’t hear a single thing after the
word ‘deaf’. They were really good though and
I went back to see them the next day and they
explained everything again.”
Learning to accept your child’s deafness is a
process that you will go through at your own pace.
For some people this process is quick, for others it
takes longer. Whatever you are feeling is normal –
there is no right or wrong way to react.
“I was devastated by the news. I couldn’t function
for days afterwards. I just thought ‘this must be
wrong; there must be something I can do’.”
Many parents talk about this acceptance as a
continuing process, but this is only one part. The
other is accepting that life for the whole family has
changed.
“I have been able to accept that my son is deaf,
but there are still things that pop up that take me
back to those feelings. It is much easier to deal
with now though!”
If your child had or has other health problems or
needs, your child’s deafness may not feel like your
main priority.
“After a short period, I accepted the hearing loss
pretty well. I think the deafness was easier to
accept for two reasons: we knew it was a very real
possibility due to the meningitis and he was so ill
he almost did not survive. Given that, a deaf child
is no big deal.”
“Meeting other families was great, the worry was
taken away. If I had been in contact with families
in similar situations from the beginning that
would have been helpful.”
“It was good for my parents as in our area they
had a grandparents’ group set up. This meant that
they could share any worries or concerns that
they had about having a deaf child in the family.”
7
“One of the best things for us was when we joined
a parents’ support group. It was such a relief to
be able to talk to people who understood what we
were going through. Even more important was to
be able to see deaf kids older than our daughter
– we were amazed to see just how normal they
were. We knew then she was going to be ok.”
Gathering information and meeting other parents
can help to take the mystery and some of the
fear out of deafness and having a deaf child. It is
important that you do these things when you feel
ready.
Parents tell us that it can be invaluable meeting
other families of deaf children. Our NDCS family
weekends bring families together, not only to learn
about childhood deafness, but also to have the
opportunity to hear and share experiences, tips
and ideas on how to parent a deaf child. It can also
allow you to meet older deaf children.
Children get so much out of coming along. Many
of them are babies, but those who are a little
older can grow in confidence when they see other
children wearing hearing aids. Parents often say
their children go away feeling happier about
wearing them.
One parent told us after attending a weekend:
“The event was extremely informative. We had
an excellent chance to meet other parents,
understand their situations and learn from their
experience whilst being able to put forward our
experiences too.”
Local groups that have been set up by parents of
deaf children can also provide opportunities for
families to come together at organised events and
meetings. For more information, contact the NDCS
Freephone Helpline on 0808 800 8880 or visit the
NDCS website: www.ndcs.org.uk.
8
9
Creating a strong support network
Many parents say that they began to feel more
comfortable with their child’s deafness when they
were more able to understand the effect it would
have on their child and the family. Brothers and
sisters, grandparents, cousins, aunts and uncles
can play a big part in helping a deaf child to be
integrated into family and community life.
Your family and friends can also be an important
source of support for you and your child. They may
offer to babysit for you, spend time with you and
your child or listen to you when you need to talk.
You may need to give your family and friends who
are not familiar with deafness some information
as to how to support you. For example, if
grandparents are babysitting they will need to
learn how to communicate effectively with your
child. In doing this, they may come to understand
more about the effect your child’s deafness
has on you, your child and your family. This
communication can also help your child to feel that
they are a full part of the family.
“I talked to [my family] about his hearing loss
and how to communicate with him. For example,
don’t shout across a noisy room and expect him
to respond. I told them to go over to him and
communicate face to face. Deaf children learn
visually. They need to see your face. Don’t get
upset if he doesn’t respond. You need to check if
he understands and allow him to respond. I think
education is the key – but don’t overwhelm them
with the small details. Tell them what your child
needs from them.”
Sometimes in families where there is a deaf child,
siblings can experience different emotions. At
times they may enjoy being with their brother/
sister and at other times they may find it frustrating
and difficult.
Good communication will allow them to
understand each other, resolve issues and
express emotions.
Young children are constantly learning about
language and communication and usually find
it easier than adults to pick up new ways of
communicating. If you involve your other
children in the things you do with your deaf child,
you can help everyone to feel they are a full part of
the family.
“We encouraged [his brother and sister] from
the very beginning. We showed them the
communication skills we used with him. And we
made sure that they talked to him, even when it
was easier and faster to communicate through
one of us.”
The extra work of communicating with a deaf
child can mean that hearing siblings are given
more responsibility than deaf children at home.
Some parents of deaf children say that, because
it can be harder to explain tasks to a deaf child,
they ask hearing brothers and sisters to do tasks
more often. This can be difficult for young children
to understand.
Having a deaf sibling can be a positive experience
for a child. It can allow them to have a positive
attitude towards people’s differences.
“I really like learning to lipread and helping other
people understand what it is like having a deaf
sister, they find it fascinating. I can now lipread
other people’s conversations which is great fun.”
“If I didn’t have a deaf sister life would be
pretty normal, but life goes on in a different
direction now.”
11
Telling others
Get the whole family involved with your child.
Grandparents and other family members can all
make a positive contribution to their life. Telling
family and friends can be very hard. Only you know
when and how it is best to tell other people. For
some parents, explaining to family members can
be an even bigger challenge than understanding
the situation themselves.
Below, we’ve included some experiences of how
other parents shared the news that their child was
deaf with their family and friends.
Siblings
It is important that brothers and sisters feel
included in your deaf child’s life as it will affect
them too. There is no right or wrong way of telling
your other children and each family will have their
own way.
“We said to them that their brother had poorly ears
and so they don’t work which means he can’t hear.”
“The situation was such a shock that I probably
explained it very badly, expecting them to
understand what I myself was unable to explain
properly and found completely confusing, very
sad and daunting. I had no experience of deafness
other than with general ageing hard of hearing in
older people.”
“We discussed which colour aids we thought he
would like and tried to involve everyone in the
decisions.”
It is important that your children can show their
feelings to you, even when their feelings are hard
to accept. Some parents may find it difficult to
talk to their hearing children about deafness so
they use different methods to do so, including
stories and books, facial expressions, games and
activities.
“We went to the local library and found a book
which was a story of a mouse who was deaf. We
read the book together and I explained the mouse
was like his sister as she can’t hear very well.”
12
Grandparents and other
family members
The relationship a child has with a grandparent or
sometimes other family members is often a special
one as they can provide support and guidance.
“Having a deaf granddaughter has been one of
the most rewarding and challenging experiences
of my life. I always wanted to be a grandparent
but I was in no way prepared for having a
grandchild who is deaf. Initially I felt out of my
depth and unsure how to support my daughter
and son-in-law. Now I know more I feel confident
and determined to be there for my granddaughter
– after all, I’m her grandma.”
Grandparents told us that it was important that all
grandchildren had the opportunity to mix together
and that communication methods among family
members were identified early on.
Parent Place, which can be accessed through the
NDCS website, is a forum for parents and family
members to talk with other families. If you have a
question about this section and want to find out
how other parents told their family members, log
on and find out at www.ndcs.org.uk.
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Understand
What does deafness mean?
Deafness happens when one or more parts of the
ear do not work exactly as they should. There are
two main types of deafness:
1. Sensori-neural deafness
2. Conductive deafness.
1. Sensori-neural (or nerve) deafness is when
there is a fault in the inner ear (most often
because the hair cells in the cochlea are not
working properly) or auditory (hearing) nerve.
Sensori-neural deafness is permanent.
2. Conductive deafness is caused when sound
cannot pass efficiently through the outer and
middle ear to the cochlea and auditory nerve.
The most common type of conductive deafness in
children is caused by ‘glue ear’. Glue ear (or otitis
media) affects about one in five children at any
time. Glue ear is a build-up of fluid in the middle
ear. For most children, the glue ear clears up by
itself and does not need any treatment. For some
children with long-term or severe glue ear, hearing
aids may be provided; or the child may need surgery
to insert grommets into the eardrums. Grommets
are tiny plastic tubes which are inserted into the
eardrum. They allow air to circulate in the middle
ear and help to prevent fluid from building up.
14
Children who have a sensori-neural deafness can
also have a conductive deafness such as glue ear.
This is known as mixed deafness.
nd Deaf Updated 2009_Understanding Deafness Latest 16/11/2010 16:41 Page 10
5 Audiograms
reasons for your child’s deafness. It is important
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(pitch) better than others or their hearing loss
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cause of deafness in 40% to 50% of children.
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deafness
read the
NDCS booklet
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canpermanent
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aVisual
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representation
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125
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This diagram is based on British Society of Audiology definitions of hearing loss
10
The National Deaf Children’s Society
Understanding your Child’s Hearing Tests
15
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Hearin
Hearing aids
Hearing aids help your child to hear as much as
possible with the hearing they have. The type and
level of your child’s hearing loss will influence any
decision to fit a hearing aid.
Most hearing aids work by making the sounds
going into the ear louder. They come in various
shapes and sizes. Most have controls that allow
the hearing aid to be set to match your child’s
level of deafness. All will have a microphone to
receive sounds. The most common types will sit
behind the ear or on the body and be connected
to an earmould, worn in the ear, by a tube. The
earmould allows the sound to enter the ear in the
most efficient way. It is important that earmoulds
are regularly replaced as your child grows. There
are also hearing aids that work by vibration. Some
hearing aids will be more suitable for babies and
young children than others. Your audiologist will
also be able to give you more information.
If your child will benefit from hearing aids you will
be able to get them from the NHS through your
local audiology service. They will be replaced as
your child grows or if their hearing loss changes.
For more information see the NDCS booklet
Hearing Aids - Information for families.
16
Cochlear implants
A cochlear implant is an electronic device that
stimulates hearing in children and adults who are
severely or profoundly deaf and who gain little or
no benefit from hearing aids. Cochlear implants
are fitted during an operation. After fitting, a lot
of support is provided to allow a child to use their
implant as effectively as possible.
The NDCS booklet Cochlear implants - A guide for
families provides families with clear, balanced and
accurate information about cochlear implants.
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Communica
How should I communicate with my
child?
Developing good communication skills is vital to
all children and their families. These skills allow
a child to learn from others and influence the
world around them. This is an essential part of
their emotional, personal and social development.
Deaf children are no different, but the way they
communicate can be different. Deaf children can
learn to communicate through sign or spoken
language, or a combination of both.
If your child is still a baby, communication will
involve using your face, voice and body to show
love and let your baby know you are there. If your
child is older, you will need to think about the ways
your family communicates to make sure they are
fully involved.
Some parents have said that they felt under
a lot of pressure when making choices about
communication. It is important to remember that
you do not have to make a choice for life. You
may want to change your approach as you learn
more about your child’s needs and preferences.
The right choice is the one that works best for you
and your child. If your child has other disabilities
or health problems, it is important to check the
communication approach that you choose will be
fully accessible to them.
The NDCS website www.ndcs.org.uk contains
information about different communication
approaches. It will also help parents who have
questions on how best to support their child’s
language and communication development,
not only in the early weeks and months after
the identification of deafness following on from
newborn hearing screening, but also as their
children grow and move into the wider world of
pre-school experience and on through formal
education in the primary school years.
17
Play
Will I need to play with my child
differently?
All children like to play and have fun. Playing with
your child helps them to develop a wide range of
skills and involves lots of communication. Very
young babies play too, but on a more basic level.
This can be simple games like peek-a-boo or
games played while feeding. Play doesn’t have to
be different because your child is deaf.
The main point of playtime is to have fun. It can
also help your child to get to know more about
themselves and the world around them. Activities
that use toys, books and other materials will help
your child to express themselves and improve their
vocabulary. It can also help them become more
confident with language, however they decide to
communicate. If your child uses sign language,
playtime can be a good opportunity to introduce
new signs or concepts.
Will I need to buy different toys?
Some toys have been specifically designed for
deaf children. These are fun to play with and also
have an extra purpose, such as helping to develop
speech and language. Be aware that some of them
flash or have different textures. However, there is
no need to buy toys that are specially adapted for
deaf children.
Our Toys and play for young deaf children
Factsheet contains information on the importance
of play, with lots of tips and ideas.
18
Education
Deaf children often need more support to be able
to take full advantage of their education. The
support can be provided from a young age. There
will also be some decisions that you have to make
at different stages as your child grows. Knowing
about the education system for deaf children can
help you make those decisions.
You should be put in contact with a Teacher of
the Deaf after your child has been identified as
deaf. They will stay in contact with you through
the early years of your child’s life. Their role is
to help you make sure your child reaches their
educational potential and to help you and your
child communicate effectively together. They will
work with the audiology clinic to help you choose
and get hearing aids for your child, and to monitor
your child’s progress.
The pre-school Teacher of the Deaf will also be able
to support you by giving you information about
choosing a pre-school place with a childminder or
in a nursery or playgroup. They will also be able
to support you later when you have to choose a
school for your child.
When it is time for your child to go to nursery or
school, the Teacher of the Deaf will help prepare
them. They may also help prepare the nursery or
school by offering training to staff and supporting
you and your child. The Teacher of the Deaf will
also be able to give you information about the
range of educational options that are available for
deaf children.
Deaf children can go to a variety of nurseries
and schools. There are some that are specifically
for deaf children. Some are for all children and
provide special support for deaf children. Some
will take deaf children but offer no special support.
Specialist support for deaf children can include a
visiting Teacher of the Deaf who will work with both
school staff and your child.
NDCS has a number of resources which provide
further information and guidance when thinking
about the education choices for your child. These
include the Helping your Deaf Child to Learn series
and the Supporting the Achievement range.
19
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Usef
A wide range of useful equipment is available
to deaf children, some of it from social services.
Equipment that your child needs for their
education may be provided by your local
education authority. Children’s needs change as
they grow and most children will only use some
of the items available.
There are four main types of equipment for
deaf children:
>
listening devices
>
alerting devices
>
subtitles
>
communication technology.
Listening devices help deaf children make the best
use of the hearing they have. Many devices work
with hearing aids or cochlear implants to reduce
problems created by background noise. Examples
of listening devices are radio aids, personal
listening aids and loop systems.
Alerting devices are designed to let deaf children
know about things that are happening around
them. Many of these use lights or vibrations to let
deaf children know that something is happening.
Examples of alerting devices include vibrating
alarm clocks and flashing-light smoke alarms.
Many films, TV programmes and computer games
have subtitles. You may need special equipment to
see these. Applying subtitles to the TV when your
child is young can act as a stimulant and parents
shouldn’t be worried about doing so at an early age.
Communication technology allows us to
communicate with others over long distances.
Deaf children and young people can take
advantage of emails, textphones and text
messaging to communicate.
The NDCS publication How Technology can
Help will give you guidance about the range of
equipment that is available. It also tells you how
you can get the equipment your deaf child needs.
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Financial su
Benefits
There are a variety of benefits that you may be
able to claim as a parent of a deaf child. The main
benefit is Disability Living Allowance (DLA).
What is Disability Living Allowance?
Disability Living Allowance is a benefit for people
who have a long term illness or disability. It
provides extra money for people who need:
> help with personal care (the care component)
> help with walking (the mobility component).
DLA is a tax-free benefit that is not means tested.
This means that it does not matter how much
money you have and it will not reduce any other
benefits you get. In some circumstances, DLA can
increase the amount of other benefits you are
entitled to.
If your child is awarded DLA, you may be eligible
to claim Carer’s Allowance. Carer’s Allowance
provides support for those looking after someone
who is disabled.
Other financial support
There are a number of other welfare benefits and
sources of support available for deaf children and
their families, including Personal Independence
Payments and charitable grants. You can find out
what you might be eligible more and how to claim
by phoning the NDCS Freephone Helpline on 0808
800 8880 or visiting the NDCS website:
www.ndcs.org.uk.
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There are a range of services, professionals and
groups who can offer you and your child support.
If your child has another disability or illness, you
may be in contact with more professionals and
other services.
It is important to remember that you will know your
child better than any professional who works with
them. The role of all professionals should be to
support you and your child and to encourage them
to develop as fully as possible.
Our support and advice team at NDCS
In many instances, the NDCS Freephone helpline
staff (see page 29). will be able to answer your
query. If more specialist or individual support is
needed, the helpline staff will pass your details to
other members of the support and advice team as
appropriate. These are described below.
Children and families’ support officers
Our team of children and families’ support officers
are based across the UK. Their role is to empower
and support families to make informed choices.
They can provide information, support and advice
to families covering a wide range of topics and
issues to do with deafness.
Appeals and disputes advisers
Welfare benefits
Our team of specialist benefits appeals and
disputes advisers have extensive knowledge of
deaf-related disability benefits. They can support
and where appropriate represent families with
appeals to the tribunal in relation to Disability
Living Allowance (DLA) and Personal Independence
Payment (PIP).
Education
Our team of specialist education appeals and
disputes advisers have knowledge and experience
of how education and disability law works. They
can offer support with appeals to the tribunal in
relation to your child’s special educational needs
or disability discrimination in education. They
will provide information and advice to empower
you to make informed decisions on behalf of your
child. Where appropriate, we may be able to offer
representation at tribunal hearings.
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Health services
Audiology department
The audiology department is part of the health
service. It can help by:
> carrying out hearing tests
> telling you about the type and level of hearing
loss your child has
>telling you if hearing aids will be useful and,
if so, supplying them
>providing earmoulds for your child’s
hearing aids
> helping you maintain your child’s hearing aids
> monitoring your child’s hearing levels
Speech and language therapists
Speech and language therapists offer support
and advice to parents of children with any type of
communication problem, including deaf children.
They help children to develop their communication
skills. This can be in sign language or speech.
Some speech and language therapists specialise
in working with deaf children but they are not
available in every area.
The NDCS factsheet Speech and Language Therapy
- A guide for parents is a useful resource to refer
to for finding out further information about what
speech and language therapists can provide
support with.
> referring you to educational support services
for deaf children
>working with other professionals, such as ear,
nose and throat (ENT) doctors and Teachers
of the Deaf, to provide support to you and
your child.
Your child’s audiologist will carry out hearing tests
and explain the information they gather. If your
child needs hearing aids, the audiologist will work
out the best type and arrange for your child to have
them. The audiologist will also monitor your child’s
hearing to make sure that the aids are appropriate.
Your child’s audiologist can refer you to a doctor
who works with deaf children. Depending on where
you live, this doctor can be called an audiological
physician, a community paediatrician in audiology
or an ENT surgeon.
The doctor you are referred to will be able to
look into the causes of your child’s deafness and
carry out any medical tests that are needed. Your
audiology department will be able to give you more
information about the doctor you will see.
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Education services
Hearing impaired service
(also known as sensory support service)
The hearing impaired service is part of the local
education authority in England and Wales, the
education service in Scotland or the education
and library board (ELB) in Northern Ireland. It
provides services to deaf children and their parents
in the child’s home, at nurseries and playgroups
or in school. It also offers advice and support to
nurseries, playgroups, schools and colleges that
teach deaf children and young people.
The hearing impaired service can provide
information and support on:
> deafness in children
> language and communication
> other support services
> your child’s hearing aids
> issues relating to being the parent of a
deaf child
> your child’s education
> applying for a place in nurseries, playgroups
and schools.
Teacher of the Deaf
Teachers of the Deaf are qualified teachers who
have taken further training to teach deaf children
specifically. They provide support to deaf children,
their parents and family, and to other professionals
who are involved with a deaf child’s education.
Some Teachers of the Deaf are based in schools
– others are known as visiting or ‘peripatetic’
Teachers of the Deaf.
Peripatetic Teachers of the Deaf travel to the deaf
child’s home, playgroup, nursery, school or college.
They offer support, advice and information to
families and those working with deaf children.
Some Teachers of the Deaf have specialist training
to work with very young children. They can be
known as pre-school or early years Teachers of
the Deaf.
For many families, the child’s Teacher of the
Deaf may be the main person responsible for
coordinating the early years support service for the
family. They can, and often do, play an important
role in helping parents to support their deaf child.
Social services
Social services are part of your local authority.
As a parent of a deaf child, you can ask for an
assessment of you and your child’s needs. It is
important to remember that not all social services
departments provide the same level of service, but
in your area social services may provide:
> equipment for your child
> sign language classes (sometimes called
language aid schemes)
> information on useful local organisations
> play schemes
> parent groups.
Social workers are professionals who are normally
employed by local authorities. They provide
practical help and advice about counselling,
transport, home help and other services. They
may also be able to help you claim state benefits
or get equipment you need at home. They can
put families in touch with other services that
provide sign language classes, parents’ groups
or play schemes. In some areas, social services
departments have specialist social workers who
work with deaf children. In other areas, social
workers work within teams supporting a range of
children with disabilities.
The NDCS resource Know Your Rights: Getting
support from your local council is a useful guide
to understanding the legal rights you and your
deaf child might have to practical help from your
local council.
25
Deaf people
“Our first encounter [of an individual who was
deaf ] was very reassuring; it gave me hope for the
future. My aspirations for my child could still be
fulfilled even though she had this disability.”
Parent after meeting a deaf role model
In some areas there are paid workers, usually
known as deaf role models, who can come into
your home and offer support with communication
and answer any questions about what it’s like to be
deaf. Deaf role models might be available through
social services, the hearing impaired service or
through a local voluntary service.
Deaf adults can provide an insight into the
experience of growing up deaf and can also be a
useful source of information about communication
and Deaf Culture (that is, sharing a common
language – British Sign Language – and common
experiences). Sometimes the professionals who
work with you will be deaf.
In many areas there are centres for deaf people
that may be able to give you more information.
Look at our young people’s website
www.buzz.org.uk for more information about
deaf clubs and centres throughout the UK.
26
Parents of deaf children
You can meet other parents at local or national
events. There are also groups around the country
where you can meet other parents of deaf children.
Some of these groups are set up by local services
and others are run by parents themselves. Your
Teacher of the Deaf, audiologist or social worker
should be able to tell you about any local groups.
Other parents of deaf children can help by:
> sharing their experiences with you as a parent
of a deaf child
> telling you about organisations and sources
of information they have found useful
> listening to and understanding how you feel
> sharing their feelings and explaining how
these have changed over time
> telling you about their child’s achievements
and giving you an opportunity to meet older
deaf children
> arranging opportunities to get together,
so that your children can meet other deaf
children.
NDCS can provide you with details of local deaf
children’s groups around the UK and other events
where you can meet other parents and families
with deaf children. Contact the NDCS Freephone
Helpline on 0808 800 8880 or visit the NDCS
website: www.ndcs.org.uk.
27
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Questions y
Having received news that their child is deaf,
parents may find they have lots of questions. This
is perfectly normal and there is no such thing as a
silly question. Some questions may come about as
a result of the diagnosis given, while some may be
more to do with your thoughts about your child’s
development. It’s important to remember that you
are not alone.
Some of the questions parents and family
members may have include:
> what do I need to do?
> where can we get advice from?
> what is best for my child?
> will my child ever be able to ride a bike?
> will my child have a relationship?
> should we use sign language with our
deaf baby?
> how can we make sure my child is included within friendship groups?
> will the hearing loss get worse?
> are my child’s additional needs a result of their deafness?
> will hearing aids help with my child’s speech?
> should we look only at deaf schools?
> what support can we access?
> how do I tell my other children?
> is it my fault my child is deaf?
We’ve often been told that parents find it useful
to note down any questions they have when they
think of them so that they can remember to talk
about them with the appropriate people.
Don’t forget that if you have any questions you
can always contact the NDCS Freephone Helpline
on 0808 800 8880 (voice and text) or post your
question on the Parent Place forum which can be
accessed via the NDCS website: www.ndcs.org.uk.
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How ca
It is the first point of contact for all our services.
It is also the place to ask for factsheets and
booklets on a very wide range of subjects related
to childhood deafness. We can also give you
information on other organisations.
If you prefer to speak a language other than
English, tell us the language of your choice and
your phone number (in English). An interpreter
will ring you back within a few minutes.
The NDCS website www.ndcs.org.uk contains
a huge amount of information about childhood
deafness. Many of our publications are available
on the website for you to download. The online
forum Parent Place is for parents and other family
members to share information and practical
advice. You can also chat with our Helpline team
on our website through our Live Chat service.
The National Deaf Children’s Society (NDCS)
works throughout the UK to support families of
deaf children. We provide clear and balanced
information on childhood deafness. We also
campaign on behalf of deaf children and their
families.
We have a wide range of services that can support
you at different stages of your journey and your
child’s development.
We offer a wide range of courses and events for
parents, families, children and young people,
and professionals. We organise sports, arts and
outdoor activities for deaf children and young
people. These range from taster sessions for those
who want to try our activities for the first time to
more intensive programmes that give deaf young
people the opportunity to develop skills and
knowledge in a particular area.
If you need information or support that we
cannot provide or that can be provided better by
another organisation, we will give you information
about them.
Membership of NDCS is free to families with a deaf
child and gives you a subscription to the NDCS
Families magazine, as well as a wide range of
resources and services.
Our Freephone Helpline 0808 800 8880 (voice
and text) team give clear, balanced information
and support on many issues relating to deafness
including education, welfare benefits, audiology
and technology.
29
Useful
NDCS resources
> Me and My Deaf Brother and Sister
> Understanding Your Child’s Hearing Tests
> Cochlear Implants: A guide for families
> Communicating with Your Deaf Child
> Helping Your Deaf Child to Learn series
> Supporting the Achievement range
(for different types of schools)
> How technology can help
> Speech and Language Therapy – A guide for
parents
> Toys and play for young deaf children
> Know Your Rights: Getting support from your
local council (a guide for each nation)
Information for families on some of the causes of
deafness, including:
• glue ear
• genetics counselling
• cytomegalovirus (CMV)
• Down’s syndrome
• cleft palate
• meningitis
• enlarged vestibular aqueducts (EVA).
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Websites
www.ndcs.org.uk/applications/discussion –
Parent Place is a forum on the NDCS website for
family members to talk with other families.
www.buzz.org.uk – For deaf children and young
people to get information, share their experiences
and have fun.
www.cafamily.org.uk – Contact a Family provides
support and advice to parents of children with
additional needs.
www.sense.org.uk – Sense offers information on
toys, play, building trust and signposts to other
useful contacts.
www.familysignlanguage.org.uk – Our free,
practical and interactive website for families with
deaf children aged 0-5 to learn basic British Sign
Language together.
www.bookstart.org.uk/bookshine - free
Bookshine packs are for babies and young children
aged 0–4 who are deaf.
NDCS provides the following services through our membership scheme.
Registration is simple, fast and free to parents and carers of deaf children
and professionals working with them. Contact the Freephone Helpline
(see below) or register through www.ndcs.org.uk
•Our Freephone helpline 0808 800 8880 (voice and text) team give clear, balanced
information and support on many issues relating to deafness including education,
welfare benefits, audiology and technology.
• A range of resources for parents and professionals on areas such as audiology, parenting and financial support.
• A website at www.ndcs.org.uk with regularly updated information on all aspects of childhood deafness and access to all NDCS resources.
• Technology Test Drive – an equipment loan service that enables deaf children to try
out equipment at home or school.
• Family weekends and special events for families of deaf children.
• A quarterly magazine and regular email updates.
• An online forum for parents and carers to share their experiences at www.ndcs.org.uk/parentplace.
• A website for deaf children and young people to get information, share their
experiences and have fun at www.buzz.org.uk.
NDCS is the leading charity dedicated to creating
a world without barriers for deaf children and
young people.
NDCS Freephone Helpline:
0808 800 8880 (voice and text)
Email: [email protected]
JR1157 Illustration license 2012–2022
www.ndcs.org.uk
Published by the National Deaf Children’s Society © November 2016
Review due: September 2017
Ground Floor South, Castle House, 37–45 Paul Street, London EC2A 4LS
Illustrations by John Paul Early www.illustrationweb.com
Tel: 020 7490 8656 (voice and text) Fax: 020 7251 5020
NDCS is a registered charity in England and Wales no. 1016532
and in Scotland no. SC040779. ISBN 978-1-907814-71-6
This publication can be requested in large print or as a text file.