Mar 19, 2021
Brenda Agnew, your host, welcomes Rachel Martens to today’s episode to talk about parenting a special needs child, becoming your best health advocate, and finding that no one should walk this journey alone.
Rachel is a busy advocate whose son was born with a rare chromosome diagnosis, cerebral palsy, and autism. She partners with CanChild as a research-engagement strategist for their online group Parents Partnering in Research. Rachel is currently also affiliated with mentorship support for students and caregivers involved with CanChild’s Family Engagement in Research Course, she has also partnered in publications with the team and is currently working on multiple projects. Rachel has a deep interest in furthering pediatric disability policy at the federal level. Rachel returned to university in the fall of 2019 with an intended focus on population health.
Key Takeaways:
[3:33] Rachael shares about her family journey.
[11.33] Embracing the opportunities coming as a result of having a special needs child.
[12:33] Rachel talks about the opportunities she found while helping her son.
[14:23] When parents become a function of care while gradually losing themselves.
[17:17] Connecting with people more authentically opens the doors for opportunities.
[18:48] Brenda and Rachel talk about the research initiatives.
[22:30] Using humor to deal with difficult situations.
[27:13] Rachel’s work turns into an inspiration to other families.
[30:26] Clinicians don’t know what you find valuable.
[31:33] Learning to confront the fear of speaking up.
[34:03] Rachel gives her advice to families that recently received a diagnosis for their child.
[38:57] The power of community.
[45:00] Rachel talks about what she has learned being Luke’s mother.
[48:55] All we could give our son was time.
Mentioned in this episode:
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