Eye Gaze technology is not a new concept. However, it was previously thought that children with CDKL5 would not be able to access such a system. Mostly due to their developmental delay and also a lot of children and adults living with CDKL5 have some degree of vision problems and/or cerebral visual impairment. Unlike Rett Syndrome, a condition closely related to CDKL5, these individuals do not have the intensive eye interaction that is seen in girls living with Rett. However, with the improvement of the availability of Eye Gaze Units in Specialist Schools in the UK, more children with CDKL5 are having the opportunity to try Eye Gaze, even if it is only timetabled for one lesson a week.
Although evidence to support the use of Eye Gaze technology for communication purposes is small, there are children who are able to communicate using these technological devices. It should not be assumed that your child cannot learn to use it to communicate and learn. Even if they are not able to make choices, if the system is able to track their eyes then there is no reason why Eye Gaze should not work for them. Our society is geared for allowing disabled individuals to have choice and independence, and by allowing independent play on an Eye Gaze computer, this promotes well-being, self-esteem and quality of life not only for the child but also for the family.
Not wanting to re-invent the wheel by producing a highly specialized document for CDKL5, we are grateful to Sally-Ann Garrett, a now retired Speech and Language Therapist, for allowing us to use her document called "Ready or Not". Although geared around Rett Syndrome, it is relevant to children and adults living with CDKL5. It can be downloaded here and can be shared with your speech and language professional or school.
As a family, we are over the moon with how well Megan is doing on the Eye Gaze. Our local SALT had decided that it wouldn't be suitable for Megan. We are so glad that she is proving them wrong. We accept that she may not progress onto the communication side of it, which she would need to do for there to be any chance of funding from them. If, all she can do is play games, that is fine by us. As far as we are concerned, this is a form of communicating. The videos we have taken speak volumes. She is doing more than we ever thought possible and she gets so much from it as well.