Changing the Way the World Looks at Our Children with Monika Jones
Jason and I had a great conversation in today's episode with Monika Jones, a mom who abandoned her legal career after her first son was born with a massive unilateral brain malformation, which caused him to have hundreds of seizures a day and led to a surgery to remove half his brain. Monika has dedicated herself to serving the community of children who need brain surgery to stop seizures that medications cannot control. She is a staunch advocate for the educational rights of children with disabilities and believes that every child - no matter how complex their support needs - has the capacity to learn. Monika lives in Altadena with her husband, Brad, her boys Henry and Thomas, and two very spoiled dogs.
In 2011, she and her husband founded the Brain Recovery Project to help children reach their full potential after epilepsy surgery. They were both frustrated with the lack of direction after surgery and wanted to help other parents navigate similar paths. “We didn't know what to do with our child [after surgery] to help him learn how to walk and learn how to talk. And was he ever going to read? What was his life going to be like? There was no roadmap, because research wasn't really focusing on what the effects of these surgeries are and how to improve the outcomes.” The Brain Recovery Project offers special education advocacy and parent education, in addition to family and professional conferences and other education initiatives.
During the episode, we also covered Monica's work, her advocacy efforts and the importance of family and sibling relationships in particular. While discussing sibling perspectives, Monika explained that their family has tried to navigate the challenges that have come up “in a way that honors Thomas’ feelings about his brother.” As a parent, Monika says that she tries not to shove her politics down her younger son’s throat, and to instead acknowledge that he has honest feelings. While it is difficult to deal with feelings of embarrassment about a sibling with a disability, Monika says that her younger son sometimes surprises her and wants his brother to come drop him off at school.
As a caregiver, Monika spoke frankly about how she wants her sons to see her. She recalled a moment of realization she experienced while complaining to a friend about her son’s developmental challenges. “This is the body he came to this earth in and I'm going to do my best to help him thrive, but I am not going to be sad or upset about who he is. I'm going to be his best advocate, but I don't ever want him to see sadness in my face when he looks at me,” she explained. Monika stressed the importance of loving her son as he is. “I think in our disability world, we can be so sad and upset about who our kids are that we forget that we're projecting that sadness outwardly, and it takes away from who they are as human beings. If we want the world to change how they look at our children, it has to start with us,” she said.
Some of the most moving conversation came when Monika discussed her marriage and the way that she and Brad have committed to maintaining its strength. "We made a promise to one another very early on that our marriage would be the foundation for everything related to our children, especially, you know, when Henry was born, because we could see that if we focused only on him that our marriage would collapse, the weight of his diagnoses, the surgeries, his care would, would collapse our marriage. It would destroy it."
Most Inspiring Person or Group
My husband Brad