Family Issues

Family Issues

Whether an individual is diagnosed at birth,or at age two, five or twenty, receiving a diagnosis of CdLS can be overwhelming. A lifelong process of challenging and rechallenging feelings, thoughts, actions and beliefs may begin. There will be sadness, but there will also be joy. There will also be many decsions to be made, but they do not need to be made in isolation. There are many families and professionals ready to offer information, support and encouragment to people who request it.

Families may struggle to accept the diagnosis of Cornelia de Lange Syndrome. Shock, anger, denial, guilt, and sadness are common early responses. Most families adjust to their new situation, but protracted grief or depression in a family member should be treated. In addition to the initial adjustment, intermittent stresses throughout the life of the child may temporarily destabilize a family. The primary care providers should periodically inquire about family adjustment and continue to provide emotional support for the family.

Children may qualify for special services such as CAP/MR (Community Assistance Program for the Mentally Retarded) through the division of developmental disabilities at their local mental health center. Most children should be eligible for medicaid (independent of parentsí income) which provides prescription coverage as well as physical, occupational and speech therapy. In addition, respite care should be suggested in cases where the care-taking burden is high. The Association of Retarded Citizens often has a respite program and also provides support for families.

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