When is the best time to discuss CMTC with the child? Should I as the parent take the initiative or can I better wait until the child asks questions?
Do not start the discussion yourself. Let the child do so first if possible, as otherwise it may appear that the child is the one solving the issue that the parents have with their view of the child’s disorder. Above all, the child may also ask questions that the parents have not yet thought about because the child has other priorities.
The child with CMTC does not appear to have any issues but as parent I do. I consider as a parent that the CMTC patches are unattractive on his/her body. How can I deal with this in practice?
The parents can best adopt a “WE” approach. In other words, both parents need to agree with each other how to deal with this. Ask for help if needed from a paediatric psychologist that also has children.
The grandparents are giving the child with the disorder extra attention.
Raise this issue with the grandparents and explain that they are in fact strengthening the “patient” role of the child and their disadvantaged position in comparison to the other children. In this way the child will not be able to build self-confidence and the other children will learn to display similar behaviour in order to gain equal attention.