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the caregiver perspective
Understanding Advocacy the caregiver perspective
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What is Advocacy?
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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
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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
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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.”
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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.”
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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
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“bottle babies”
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“Think for two, don’t drink for two”
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“for a future with hope, do not drink while pregnant”
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“Don’t drink your Baby’s future away”
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“for the love of children, don’t drink while pregnant”
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Caregivers face many Challenges
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Worsening the situation Losing support Family and friends disengaging
Parent blaming Concerns not taken seriously Caregiver burnout
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enabling versus accommodating There is a difference
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stigma Birth parents face
Birth parents face increased/heightened stigma and judgement
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Try to Remember:
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Caregivers are the experts Caregivers experience immense stress
Individuals have a voice
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Lessons I’ve learned It’s okay to walk away, to take a breath
It doesn’t exist unless it’s in writing
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We can’t do it alone Caregivers can’t do it alone
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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
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community It takes a Strategically Advocating Makes the biggest Impact
when professionals and caregivers work together
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Thank You It’s okay to walk away, to take a breath
It doesn’t exist unless it’s in writing
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