Lisa Lilienthal is a wife and mother, a writer and publicist, using storytelling to build mission-based brands.
She’s used a wheelchair since age 8, and together with her husband Gene, is raising two kids with special needs. Cooper, age 17, has Down syndrome, and Annabelle, age 19, struggles with mental health issues.
In today's podcast, Jason, Elizabeth and Lisa had a wide-ranging discussion about Lisa's unique experience of raising two kids with special needs even as she navigates the world as a disabled person herself. Lisa shared that when she had her son Cooper, she had already spent a big part of her life separating herself from children and people with intellectual disabilities, not in an intentional way but rather because of her experiences as a person with physical capabilities being treated in a manner that suggested she couldn't understand what was being said to her. "When you have a physical disability," Lisa said, "people assume that your disability impacts everything about you. People will talk to the person you're with, instead of you." Naturally, when she had Cooper, she had to come to terms with the other side of that. "The gift of all this is, for me, another awakening or awareness of what stories our culture tells or has told over the years about people who are disabled."
Jason shared his own struggle to define his family, particularly when out in public, and how that struggle changes over the years. This led to a discussion of invisible disabilities like those of mental health. Lisa believes that her daughter owns her own story and that Annabelle's struggle with mental health issues is hers to tell, but she is passionate about reaching out to others as a caregiver and mother and to share her own experiences. Jason and Elizabeth agreed that each of their children's journeys is theirs to live, whether the child is capable of speaking for him or herself or needs assistance. The conflict for parents of disabled children, particularly for those who have intellectual disabilities, is in the balancing of respecting the child's integrity while advocating for them.
Elizabeth remembered a long-ago conversation with Lisa about ladders, about our children being on those ladders and our protective impulse to be behind them on the same ladder, either pushing them forward or catching them when they fall. They discussed the alternative to that -- to putting one's ladder next to one's child's ladder and traveling alongside them.
Lisa, Jason and Elizabeth continued to discuss issues related to marriage, to siblings, to IEPs and to self-care. The conversation was so rich that we encourage you to listen to the full hour. We are certain that your lives will be enriched and that you will leave with an expanded view of what it means not just to be disabled or to care for a person who is disabled but to be human.
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