the caregiver perspective Understanding Advocacy the caregiver perspective

What is Advocacy?

Advocacy seeks to ensure that people, particularly those who are the most vulnerable in society, are able to: Have their voice heard, Defend and safeguard their rights, and Have their views considered when decisions are being made about their lives

Advocacy and FASD - Why advocating is so much harder in the world of FASD – Stigma -Advocacy and FASD is essentially highlighting/focusing on everything your child cannot do

What is stigma? The short definition of stigma according to Webster’s New World Dictionary: “a mark of disgrace or reproach.” Kristalyn Salters-Pedneault, Ph.D. offers this definition of stigma, “Stigma is a perceived negative attribute that causes someone to devalue or think less of the whole person.”

A mark of disgrace or reproach stigma: a perceived negative attribute that causes someone to devalue or think less of the whole person A mark of disgrace or reproach The short definition of stigma according to Webster’s New World Dictionary: “a mark of disgrace or reproach.” Kristalyn Salters-Pedneault, Ph.D. offers this definition of stigma, “Stigma is a perceived negative attribute that causes someone to devalue or think less of the whole person.”

social stigma: disapproval of a person based on socially characteristic grounds that are perceived, and serve to distinguish them, from other members of a society

“bottle babies”

“Think for two, don’t drink for two”

“for a future with hope, do not drink while pregnant”

“Don’t drink your Baby’s future away”

“for the love of children, don’t drink while pregnant”

Caregivers face many Challenges

Worsening the situation Losing support Family and friends disengaging Parent blaming Concerns not taken seriously Caregiver burnout

enabling versus accommodating There is a difference

stigma Birth parents face Birth parents face increased/heightened stigma and judgement

Try to Remember:

Caregivers are the experts Caregivers experience immense stress Individuals have a voice

Lessons I’ve learned It’s okay to walk away, to take a breath It doesn’t exist unless it’s in writing

We can’t do it alone Caregivers can’t do it alone

It is okay to ask for help There is strength in numbers You won’t know unless you ask We can’t change everyone Don’t let titles intimidate you It doesn’t exist unless it’s in writing Sometimes the difference doesn’t happen right away

community It takes a Strategically Advocating Makes the biggest Impact when professionals and caregivers work together

Thank You It’s okay to walk away, to take a breath It doesn’t exist unless it’s in writing