Speech Language and Communication Issues
One of the most challenging aspects of raising a child with FOXG1 syndrome is communicating with them. All children with FOXG1 have severe and complex speech, language and communication issues. Some are completely non verbal but that does mean they cannot learn to communicate.
The early years are particularly important for learning langauge but we all learn new words and phrases throughout life. A person with severe communication needs will continue to need support with communication throughout their lives. Communication underpins all our education in school so finding a way to communicate with our child, no matter how small is important.
As a parent you will already very creative about communicating with your child.
ICAN have produced a guide for the different stages of what is considered typical speech and language development. None of our FOXG1 chidren will develop speech and language along this path but it may be a helpful guide as to where your child is and ideas for areas to work on. Remember being non verbal does not mean they are not communicating with you.
Talking does not just involve speech but hand gestures, facial expression, eye contact, body language, touch and sometimes unacceptable physical behaviours such as kicking, punching and biting. Makaton uses speech with signs (gestures) and symbols (pictures) to help people communicate. Makaton uses sign alongside speech in spoken word order. It can be helpful to use Makaton even if your child struggles or is unable to sign themselves. It encourage eye contact, supports understanding and help to reduce frustration. There are many Makaton courses available throughout the UK.
Augmentative and Alternative Communication is communication by other means than speech. This can be low tech (such as pen and paper) or high tech (such as an computerised voice output device).
If your child has good hand function an iPad has a number of useful apps for communication. A good place to start with a very young child is getting used to playing simples games on an iPad so they get the hang of cause and effect, pointing and swiping.
Children who have poor hand function can successfully communicate with an Eyegaze device. These are high tech devices that have been used by children in the Rett Syndrome community for some time. Sadly if your children is non verbal and physically not able to move then it is often assumed that they have nothing to say. People with speech or motor difficulties are left in silence because they do not have the tools needed to communicate. Of course this is not true and for some young people eyegaze technology has provided them with the technology they need to communicate with the outside world.
If you are looking at alternative ways to communicate a good place to start is the Communication Matters website. Communication Matters is a UK-wide organisation that supports people of all ages who find it hard to communicate because they have little or no clear speech.
If your child has complex needs they will need a thorough assessment of their communication needs ideally at a regional centre.
Tobii Dynavox are one of the leading providers of communication technology throughout the world. Their website has a guide to augmentative and alternative communication as well as a range of devices aimed at different levels of communication.
The Sequal Trust are a communication disability charity that aims to improve the quality of life for those living with severe learning disabilities, mobility issues and communication difficulties. Visit their website for more information.
AssistiveWare have a series of training videos to help get you started with using a communication aid.
There is also information about "How to be a respectful communication partner" which may be useful to share with family, carers and schools.
They have information on a range of iPad apps that can be used for communication.
Communication Matters are a registered charity that aims to increase awareness, understanding and knowledge of the needs of people who struggle to communicate.
They have a supplier database.
Information about about AAC assessments and the referral process. Please note there are different criteria for different parts of the UK and there are links to guidance via their website.