During pregnancy, parents usually imagine what their child will be like and everything they’ll get to do together. You get excited about all the traditional milestones and look forward to experiencing this new reality.
But for parents who receive difficult news after the birth of their child, such as an unexpected Down Syndrome diagnosis, this reality is shattered in a matter of seconds. Even the most understanding of parents are faced with grieving and adjusting.
Amy Julia Becker (an award-winning writer and speaker on Disabilities and Family) experienced this first hand at the birth of her first child, Penny. Today, Amy Julia is sharing her family’s journey: from grieving the child they “thought” they’d be receiving, to adjusting to their new normal, to eventually realizing all the beautiful things that come from embracing our humanity as is.
In honor of Down Syndrome Awareness Month, Amy Julia shares useful tips on things she wished she knew when her daughter was diagnosed, and on navigating the nuances of raising a child with different abilities.
This episode is perfect for any parent who is currently feeling overwhelmed, alone, or nervous about their child’s disability and I hope you or someone you love and you get a ton of value from it.
Key Takeaways with Amy Julia Becker
- The importance of Down Syndrome Awareness Month.
- Navigating a Down Syndrome diagnosis.
- Grieving and adjusting to the reality of parenting a child with disabilities.
- Finding community through shared parenting experiences.
- Dealing with pain, guilt, and shame as a parent of a child with a disability.
- Validating the feelings of parents going through disability journeys.
- Looking beyond the tragedy and negativity surrounding disabilities.
- Hierarchy vs Mutuality: an inclusive approach to disabilities.
- How to support your partner through a difficult diagnosis.
- The growth opportunities in every challenge.
- Accepting (and embracing) the uniqueness of every diagnosis.
- Focusing on the present in order to find joy.
Amy Julia Becker Tweetables
- “I had to confront some ugly places in myself, grieve the child I thought I was receiving, but then actually recognize there was incredible joy in the gift we were given.” — Amy Julia Becker
- “What if we all belong as we are, and how can we embrace one another in that place?” — Amy Julia Becker
- “Each human being we encounter has needs and gifts. There is giving and receiving that can happen with everyone.” — Amy Julia Becker
- “There’s a perception in our culture that disability is about deficit and need. Even people who have a charitable view of disability can get into a hierarchy, as opposed to a sense of mutuality.” — Amy Julia Becker
- “There are these life experiences that swoop in and they are traumatic and rock our world, but they’re also opportunities to see what skills you need to get better at that you can take with you to the next unexpected circumstance.” — Jamie Freedlund
- “Joy lives in the present. Fear, anxiety, and worry live in the future and the unknown.” — Jamie Freedlund
Resources
- Amy Julia Becker.com
- To Be Made Well by Amy Julia Becker
- Follow Amy Julia Becker on Facebook, Instagram, or Twitter (X)
- Amy Julia Becker’s Podcast: Love Is Stronger Than Fear
- National Down Syndrome Society
- Free Download: 5 Things I Wish I’d Known When Our Daughter Was Diagnosed With Down Syndrome
- Welcome to Holland (by Emily Perl Kingsley)
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