Mental Health and Well-Being in Mothers of Children With Rare Genetic Syndromes Showing Chronic Challenging Behavior: A Cross-Sectional and Longitudinal Study.

Dawn and her team followed 65 moms whose kids have Angelman, Cornelia de Lange, or Cri du Chat syndromes.

They asked the same questions twice: when the child was 5-9 years old and again at 9-15.

Each mom filled out four short forms about stress, depression, anxiety, and positive mood.

Day-to-day stress went up when kids showed lots of hitting, screaming, or self-injury.

Yet depression and anxiety scores stayed flat, and moms still reported good moments.

Syndrome-specific worries—like fear of seizures—dropped as the child grew older.

Yorke et al. (2018) pooled 35 autism studies and also found child behavior hikes parent stress.

Carr et al. (2013) saw stress rise in autism families during adolescence, while Dawn’s rare-syndrome moms felt less syndrome stress over time—an apparent contradiction.

The difference is topic: Themba tracked daily hassles that grow with teen size; Dawn tracked fears tied to the syndrome label, which fade as moms learn the child will survive.

Lanfranchi et al. (2012) showed Prader-Willi parents carry the heaviest load; Dawn adds that even heavy load can feel lighter with time.

You can reassure moms: challenging behavior may tire them, but it does not automatically breed clinical depression.

Watch for syndrome-specific fears at intake; these are the worries that actually shrink as the child ages.

Teach coping skills early, then check back—stress may stay, but dread can leave.