204: Caregiver Isolation, Transitioning to Adult Special Needs, and Becoming CapeAble

“Millie’s journey has taken me to the end of myself, but it’s been the most beautiful beginning of understanding humanness and how to be compassionate and how to really be kind to other people and take notice that the story that is their life may not be what you see.”-Marna Pacheco

How does trauma affect the whole family, and how can we show compassion to adults with special needs?

One thing I have learned about throughout my career as a child life specialist and have heard from many families on this podcast is the impact that having a child with disabilities and the societal stigma can have on a family.

Today we get to chat with Marna Pacheco, a mother and inventor who understands this impact all too well. She and her husband have two children, one of whom, Millie, has special needs. Marna shares with us the challenges of adopting a child with trauma and special needs, such as the way trauma affects a family, finding therapies, and navigating the medical system.

She shares how parenting a special needs child has both challenged her and shifted her perspective over the years. Marna has continued to empower communities to support individuals with special needs. Being a 24/7 caregiver is not an easy job, Marna describes it as “predictably unpredictable”. Now at almost 18, Millie is transitioning into adulthood which has presented the Pacheco family with a whole new set of challenges.

“It is a huge gap that is missing for the adult special needs community of how the caregivers are being supported in this to help our children navigate the world and thrive. I mean, she should be given every opportunity to thrive as an adult.”

Aside from being a committed and resilient parent, Marna is also a businesswoman who created CapeAble Weighted Products made with smart weight technology. Her invention was inspired by Millie after weighted products were recommended by an occupational therapist to help regulate her nervous system and feel safe. After searching through weighted products and trying many out, Marna saw a lack of dignified, fashionable, and practical options.

The resources mentioned in this episode are:

Diagnosis resources

Robyn Gobbel’s podcast Big Baffling Behaviors

Books on trauma and brain development by Dr. Bruce Perry, Dr. Stephen Porges, Dr. Dan Siegel

About Katie Taylor, CCLS and Child Life On Call:

Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform revolutionizing pediatric healthcare by putting parents at the center of the medical journey. With over 13 years of experience as a certified child life specialist, Katie has made significant contributions to the field of child life and the families she’s served with over a decade of working at the bedside. She is an accomplished author, engaging child life and entrepreneurship speaker, and the Child Life On Call Podcast host. Katie’s work emphasizes the vital role of child life services in supporting caregivers and enhancing children’s medical journeys.

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