Resources
Useful links to resources based around some of the major areas of need in DDX3X syndrome.
Communication:
This explains about expressive and receptive language
https://www.mentalhealth.org.uk/learning-disabilities/a-to-z/c/communicating-people-learning-disabilities
Communication and challenging behaviour
https://www.challengingbehaviour.org.uk/learning-disability-files/04—Communication-Information-sheet-web.pdf
Some communication tools and approaches that may be useful
http://www.bild.org.uk/EasySiteWeb/GatewayLink.aspx?alId=3338
Sensory:
A parent’s perspective (UK)
http://thesensoryseeker.com/does-your-child-have-sensory-processing-disorder/
A parent’s perspective (America)
http://www.sensorymom.com
This video provides a good explanation of sensory processing disorder
https://www.facebook.com/sensoryspectacle/videos/253790405309992/
Sensory integration education
https://www.sensoryintegration.org.uk
Sensory processing disorder checklist
https://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html
https://www.sensory-processing-disorder.com/sensory-processing-disorder-blog.html
Sensory toys and equipment:
Cerebral Visual Impairment (CVI):
Violent and Challenging Behaviour
Lots of useful advice and information based on real life experience.
https://yvonnenewbold.com
The Challenging Behaviour Foundation provides an abundance of information along with a Family Support Service.
https://www.challengingbehaviour.org.uk
Sleep
‘The Unique Guide to Sleep Problems’ PDF
The Cerebra Sleep Service
https://www.cerebra.org.uk/help-and-information/sleep-service/
Helping Your Child Sleep – Contact a Family Leaflet
https://contact.org.uk/media/1183103/helping_your_child_sleep.pdf
Seizures
A useful description of different types of seizures
https://www.epilepsysociety.org.uk/seizure-types#.XIobrBqnyhA
How childhood epilepsy syndromes are diagnosed, details of some specific syndromes and sources of further support.
https://www.epilepsysociety.org.uk/childhood-epilepsy-syndromes#.XIocIRqnyhA
Join the DDX3X Registry
Contribute to research into this rare condition.
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