The longest relationship any of us will have is likely to be with our sibling/s. When one of those siblings has CdLS, these relationships take on another dimension of meaning, particularly after the death or incapacity of the parents.
We recommend that parents be aware of issues siblings could face, and to allow children to voice their concerns without fear of disappointing parents or feeling they are adding to parents' worries.
Seek professional help if you feel it is needed. Talk to your GP for advice.
An excellent resource is Siblings Australia which was founded by Kate Strohm. Below is a quote from the Siblings Australia website.
Why Support Siblings - the mix of sibling experience
Most siblings of a person with a disability will be able to say there were good and not so good parts to their experience. Those who can look back and see benefits in their situation say they have found inspiration through their brothers and sisters, become more tolerant, more compassionate, more aware of their blessings and, in many ways, more mature than young people who have not had these experiences. They say growing up with their brother or sister gave true meaning to their lives, that 'they made me who I am'. Some children, however, have a more difficult time. They can experience confusion over the feelings that arise. On the one hand, a child may feel loving and protective toward their brother or sister, but at the same time feel a mixture of more difficult feelings such as resentment, fear, guilt, embarrassment and sorrow. As children, they are likely to lack the understanding, emotional maturity and coping skills required to deal with their experiences. As a result, they can feel isolated and confused and become 'at risk' for a range of emotional, mental and physical health problems, which can continue into adulthood.
Not all siblings will experience concerns and, with an increased understanding of the issues for siblings, it is fairly easy to support children so their adjustment can become more positive. You can't remove some of the stresses, but you can help children manage them. Most children can deal with stress better if they feel listened to and understood.
Insight on SBS interviewed a number of siblings on a show which first aired in 2017. Here is a link to the show on SBS On Demand: SBS Sibling Carers.
Movie recommendation: Wonder - Julia Roberts and Owen Wilson. The film follows a child with Treacher Collins Syndrome trying to fit in. It explores issues from many perspectives, including that of a sibling.