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 ŠCHANGE www.changepeople.co.uk