Cri Du Chat Syndrome Support Group

The Impact on the Family

Having a child with CDCS is a chronic stressor for most families and one that requires continuous adaptation of the parents, grandparents and siblings over time. Not only do families have to cope and adjust emotionally but they also have to cope with providing more intensive care for their infant and child. For example, meeting additional physical needs such as problems in feeding and weight gain in the early years, alongside knowledge that their child will require special needs education throughout their school lives can create ever increasing levels of stress and feelings of helplessness. Our research highlighted that parents of CDCS children displayed stress levels that are in the top 70% when compared to the stress levels of a normal population of parents but were at a similar level to parents who also had a child with a learning disability but without CDCS. This suggests that increased stress levels are likely to reflect the increased demands of coping with the needs of a child with a severe learning disability rather than specific to being a parent of a CDCS child.

A very worrying concern is that nearly a quarter of parents surveyed, 24% presented with clinical symptoms of depression and 43% experienced clinical symptoms of anxiety. Parents reported that strained relationships with their child and difficulty in managing problem behaviours were a main factor in increasing stress and anxiety levels. When we looked at mothers and fathers separately, mothers experienced greater levels of parental distress, anxiety and depression than fathers. This was particularly pronounced for anxiety with 60% of mothers compared to 20% of fathers experiencing some clinical symptoms, this increasing as the child aged and as problem behaviours (e.g. hyperactivity, self-injury, stereotypy) increased in intensity. What is especially concerning is that few parents reported seeking external help in learning appropriate coping strategies and even fewer reported using medication or alternative therapies to alleviate symptoms of anxiety and depression. However, parents need to recognise that they are not on their own in having to cope with a child with a severe learning disability. Family doctors should be able to put parents in touch with a counsellor and a local self help group. Local branches of Mencap are also a good source of information and will know of any parent groups or activities which you may find helpful.

We also recommend that families (including parents, grandparents and siblings) attend the annual conference of the CDCS Parents Support Group. It provides a once a year opportunity to meet up with other families caring for a Cri du chat child in a fairly informal setting allowing for an exchange of experiences and information. Professional speakers also provide an insight into the syndrome and development areas. Contact ray@criduchat.co.uk (tel-01268 411666)

What about siblings? If parents experience stress through having a child with CDCS then it is highly likely that other children in the family will experience some difficult emotions too. Sources of difficulty for siblings are not only the effects of their parents’ stress but also their feelings that their parents give more attention to their disabled brother or sister, increased responsibilities within the family and fewer social or recreational opportunities. It is therefore important for parents not to overlook their other children’s needs even though they have their hands full with their child with CDCS and to appreciate the help given by siblings.

There can be positive effects of having a disabled brother or sister. Several studies have found that siblings often show increased compassion, tolerance, sensitivity, maturity and responsibility. However, siblings in our study did express concern about their own future and parents should be aware that this is a topic that both they and their children need to explore. Siblings too may benefit from some of the self help contacts and information provided for parents and they should be given this option to explore them.