"She understands an enormous amount. Even conversations between myself and another adult she knows exactly what we're talking about"
Individuals with Cri du Chat syndrome usually have better receptive language skills than expressive language skills (i.e., they can understand more speech than they can use). This should provide optimism to parents regarding the capabilities of their children, as they can understand more language than their expressive skills suggest.
In this film parents describe their children's communication:
Difficulties in expressive communication (the ability to express oneself) are very common. A large proportion of individuals have minimal or no speech. It seems likely that expressive language difficulties are related to physical abnormalities in the larynx (voice box) and delayed motor skill development.
Studies that have reported on the number of individuals who can use speech have found mixed results. It is estimated that around 3 out of 10 individuals use single words to communicate. Some studies have suggested that approximately 2 out of 10 individuals may have a wider vocabulary (over 100 words). However, one recent study found that, while speech development was severely delayed in Cri du Chat syndrome, most children did acquire some speech. At 4.5 years old a quarter of children could form short (two-three word) sentences, 50% at age 5 and almost all at age 10.
Many children and adults with Cri du Chat syndrome will compensate for their difficulties in verbal communication by using a range of gestures or signs to support their verbal communication. Studies suggest that approximately 5 out of 10 children with Cri du Chat use gestures and non-verbal communication. Many individuals will go to great lengths in order to be understood by others.
It seems that while children and adults with Cri du Chat syndrome are extremely motivated to communicate, poor motor control and other such difficulties, may lead to very poor articulation of verbal communication.
Sometimes, attempts at communication may only be understood by very familiar people. This motivation to communicate combined with their difficulties in communicating can be extremely frustrating for people with Cri du Chat syndrome and may underlie a lot of behaviours that challenge. Some parents may also find it helpful to produce a communication passport for the individual they care for. This helps to keep everybody who works with the individual informed about how the person prefers to communicate. To learn more about communication passports and view one parent's example and experience, please click here.