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Fragile X

An Easy Read
Guide to
Fragile X Syndrome
For Parents

What is Fragile X?
Fragile X is a genetic condition.
This means that it is passed
down through families. It is
carried on the X chromosome.

Boys have an X and a Y
chromosome. Girls have 2 X
chromosomes. Women with
fragile X can have children with
fragile X.

A blood test can tell if a child or
adult has fragile X. A little bit of
blood is sent to a Regional
Genetic Centre. This is a special
hospital. You need to talk to your
doctor about this test.

If the blood test shows your
child has fragile X a nurse or
doctor can talk to you. The
nurses are called Genetic
Nurse Counsellors.

You can call The Fragile X
Society. The phone number
and email address are on the
back of this book.

Fragile X Society:

01371 875100

What does Fragile X Cause?

Fragile X can cause problems
with learning.

Fragile X can sometimes
cause problems with
behaviour.

Children can also have
Longer faces
Bigger ears
Overcrowded teeth
Soft skin
Flat feet
Some joints that go
backwards and forwards.
This is often the joints in the
fingers. This is called
double jointedness.

The roof of the mouth can
be higher than usual, which
can make talking and
eating more difficult.

Some children can get more
ear infections than usual.

A few children have fits.

They can take medicine to
help.

Some children need glasses.
Some children have a squint.

Some children have floppy
muscles. This can make
learning to walk and sit up
more difficult.

Learning to Talk and Fragile X

Most children with fragile X
learn to talk later than other
children. But they often
understand what is said to
them.

Lots of children with fragile X
talk very fast.
They can repeat the same
words again and again.
They can repeat what
someone else has said.

Most children with fragile X
do not like people to look at
them when they are talking to
them. This is not because
they do not like people.

Learning to talk - What can help?
Children can see a Speech
and Language Therapist. This
is a person who can help
them to communicate.

A few children use signs and
symbols to help them
communicate.

People should not ask
someone with fragile X to
look at them. This might
upset the person with
fragile X.

Learning and Fragile X

Some children with fragile X
find it hard to sit still.
Some children with fragile X
find it hard to pay attention.

Some children with fragile X
can not understand lots of
instructions at the same time.
Some children with fragile X
find it hard to do things in the
right order.

Learning - What can help?

Children with fragile X find it
easier to learn if they are
calm and people around them
are calm. They find it easier
to learn if an adult sits beside
them. They find it easier to
learn if they can see
something rather than just
listen.

Pictures can be used to show
children what is happening
next.

Some children with fragile X
like to work on the computer.
They can look at the screen.
They can sit side by side with
someone.

Behaviour and Fragile X

Some children with fragile X
are always rushing about.
Some children with fragile X
do things quickly without
thinking.
Some children with fragile X
find it hard to wait.

Some children with fragile X
are shy. They are often shy
with people they do not know.

Children with fragile X do not
usually like changes to their
normal day. They like to know
what is going to happen next.

Sometimes children with
fragile X do not like moving
from one place to another
place.

Sometimes they do not like
doing one thing and then
having to change to another.

Behaviour - What can help?

Children need help to calm
down if they are upset.

It is best to talk quietly to help
children calm down.

Being in a quiet place by
themselves can help.

Making simple stories with
pictures can help. They show
children what to do when they
are cross or upset.

Children with fragile X can
find it easier to move from one
place to another place if they
have something to carry.

Fragile X and the Senses

It is important to know that
children with fragile X might
not get upset if they are hurt.

Sometimes children with
fragile X do not like busy
places like supermarkets.
Sometimes they do not like
crowded places.

Sometimes they do not like
people to touch them even by
accident.

They may not like sudden
noises or very noisy places.
They might even make a lot
of noise themselves in these
situations.

Sometimes children with
fragile X have sensitive
mouths and do not like some
foods.

They may not like the feel of
some clothes.

What might happen now?

This is what children might do
if they are unhappy:
bite their hand
chew their clothes
cry

run away
have a tantrum
flap their hands

What can help?

Choose clothes that are
comfortable for your child.
Some children like loose
clothes.
Some children like tight
clothes.
Some children like soft
clothes.

Cutting off itchy labels might
help.

An Occupational Therapist
might be able to help. They
might be able to find ways to
help children keep calm in
these situations. Your doctor
or your child’s school might
be able to help you find an
Occupational Therapist.

Girls and Fragile X

A few girls with fragile X have
the difficulties we have already
talked about. Some girls with
fragile X do not have as many
difficulties. This is because they
have 2 X chromosomes. One X
can help to reduce the
problems caused by the fragile
X. But they might still have
some difficulties.

Girls with fragile X can be very
shy. They can find it difficult to
make friends. Sometimes they
are not very confident.

At school they can find
Number Work difficult.
They can get worried if they
get things wrong.

The Good Stuff

We have talked about how
fragile X can affect children.
But we should not forget the
good things. Children with
fragile X are often happy and
friendly.

Children with fragile X often
care about how other people
are feeling. They know when
someone is sad or happy.

Children with fragile X are
often good at copying other
people.

Children with fragile X can
often find their favourite DVD
and put it on.

Children with fragile X can be
good at playing games on the
computer.

Some children with fragile X
are just as able as other
children. Children with fragile
X can be good at
remembering things from a
long time ago.

Helping Fragile X Families
Acknowledgements
Professor Jeremy Turk, Charles Gibb and Dr Angela
Barnicoat on whose work this book is based.
CHANGE for the Pictures

The Fragile X Society
Rood End House
6 Stortford Road
Great Dunmow
Essex CM6 1DA
Phone: 01371 875100
Email: info@fragilex.org.uk
Website: www.fragilex.org.uk
Registered Charity and Limited Company in England
Charity registration number: 1127861
Company registration number: 6724061

All interior images ©CHANGE www.changepeople.co.uk


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