Your Child - Education

Some children with more complex craniofacial conditions may need or benefit from extra educational support to encourage their development and learning. Here we provide some general and practical information about how to access the care and support your child should be entitled to. This is not an exhaustive list so please do use the links given throughout to find out more and speak to your Local Authority.

It is a big concern that some Local Authorities are not as good as others at providing support to children with special needs.  It can be a post-code lottery.  If you are struggling to obtain the support your child needs, our best advice is to be persistent in your efforts, use the support groups available and try the Headlines forum to find others in your area who have been through the same process and may be able to help.

The information provided here relates primarily to the English system.  Wales, Scotland and Northern Ireland are governed by different systems which offer much of the same through other various local bodies. Unfortunately where you live can affect the level of provision as happens in England. If you do not live in England we recommend that you contact your Local Authority to obtain further information on what is available to you.


Getting to know your fingers and how to use them : A guide for parents/carers of children with Apert syndrome

Children explore and experience much of the world with their fingers, so the better they are able to use them, the easier this will be.

Children with Apert syndrome, however, are born with their fingers fused (syndactyly) and have to undergo a number of complex surgical procedures to separate them.

Brain scans have shown that before fingers are separated, the brain sees the whole hand as a single unit, which means that when children with Apert syndrome have their fingers separated, their brains have to undergo a great number of changes. It can take a long time to build the right pathways in the brain, and this will only happen if the fingers are used in a range of activities.

Dr Caroline Hilton, a lecturer in Primary Education at University College London and herself the parent of a child with Apert syndrome, explains why it’s important to encourage children to practise using their fingers and suggests a range of simple activities designed to develop fingers awareness and fine motor skills.

» Click here to download the guide

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