For parents and caregivers of tamariki with neurodivergence, including Fetal alcohol spectrum disorder (FASD), burnout is very real.

The reality is that “self-care” is weaponised, commodified and often presented as another task to add to an already overwhelming to-do list.

‍Taking a break, going for a walk in nature or having a coffee in a comfy chair can be helpful, but it cannot address the ongoing emotional load of raising a child with complex needs, and we often still feel overwhelmed and exhausted.

Being told to do more by inexperienced well-meaning professionals exacerbates shame and disconnect for whānau.

For me, real self-care has been about creating a village. When there is stigma around diagnosis, misunderstanding about neurodivergence, or judgement about parenting in neuro-affirming ways, we can become isolated. Isolation fuels burnout, but connection helps prevent it.

Creating a village means

• Connecting with other parents who really get it; and have often been there
• Finding professionals who genuinely support, rather than judge
• Letting my friends know (on my best day) what I need so they can support me on my worst day
• Having a difficult conversation, asking for help, crying with a trusted friend, or admitting that things are hard.

We often hope that if we just love our children enough, we can fix every cognitive challenge they face, but love works best when it is supported by a strong village. Creating that village has been one of the most important lessons of my parenting journey. Humans were never meant to raise children alone. We were meant to have a village.

Your village may include immediate whānau, but sometimes it also needs other parents, educators, health professionals, support workers, and community organisations that understand brain differences and uphold mana, dignity, safety, and wellbeing.

This article is part of a series on FASD by parent and advocate Karena Findlay:

• What FASD advocacy looks like
• How FASD changed my parenting (coming soon!)