Communication in Kleefstra Syndrome
In August 2015, members of the Cerebra Centre for Neurodevelopmental Disorders and the Kleefstra Syndrome Support Group (led by Fiona & Chris Heslehurst) teamed up with families at the Kleefstra syndrome conference. During this event, parents' experiences of their children with Kleefstra syndrome were captured on film and six short films were produced. The second of these short films is available below. In this film, parents describe how their child with Kleefstra syndrome communicates with them.
Children with Kleefstra syndrome experience communication impairments but the extent of these difficulties varies from child to child. Some children with Kleefstra syndrome use recognisable words at two years of age; however, some children do not develop speech until they are older, or do not develop speech. While children with Kleefstra syndrome may have limited speech, children may be able to understand more than they can express, and using pictures or Makaton (signs) can help children develop alternative ways of communicating. Some individuals can read and write, while others cannot. Early intervention from a Speech and Language Therapist is essential to help children with Kleefstra develop communication skills.
The Economic and Social Research Council (ESRC) provided funding for these films in collaboration with the University of Birmingham, Cerebra, and UNIQUE. You can also watch a short film of parent introductions for children with Kleefstra Syndrome, and a short film about social skills, mood, challenging behaviour and Autism Spectrum Disorder in Kleefstra syndrome. Keep an eye out for updates about the upcoming 2017 Kleefstra Family Conference on kleefstra.org.