From TikTok Fame to Autism Advocacy: A Mom's Struggles and Triumphs
Audio Brief
Show transcript
This episode covers the profound challenges and systemic failures faced by parents of children with autism, as shared by paramedic and advocate Joannie Tew.
There are four key takeaways from this conversation.
First, challenging behaviors from nonverbal children are communication, not defiance. Second, parents must become relentless advocates due to significant systemic failures in support. Third, the emotional journey of parenting a child with severe autism is a marathon, with survival days being a valid part of the process. Finally, building a supportive community is crucial for overcoming intense parental isolation.
A central theme emphasizes that challenging behaviors are not defiance but a form of communication. They stem from unmet sensory, emotional, or physical needs, requiring identification of these underlying factors rather than simply punishing actions.
The discussion critically highlights severe systemic failures within public school and therapeutic systems. These institutions often lack adequate training, resources, and qualified professionals, frequently leaving families to "grasp at straws" and forcing parents into untrained therapist roles.
Parenting a child with severe autism is profoundly challenging, often described as a grieving process. The immense emotional strain leads to days focused purely on survival, underscoring the long-term endurance required from caregivers.
Against this backdrop of isolation and systemic gaps, building community is essential. Joannie Tew's experience fueled her mission to create the "Autism Mom Life" community, offering an honest look at the challenges and fostering vital connections for isolated parents.
This discussion offers a candid look into the realities of parenting children with severe autism, advocating for understanding, systemic change, and robust community support.
Episode Overview
- Paramedic and social media creator Joannie Tew shares her personal journey as the mother of two sons with autism, from her lifelong dream of motherhood to navigating their diagnoses.
- The conversation details the profound, systemic failures within the public school and therapeutic systems to provide adequate support for children with severe behavioral needs.
- Joannie discusses the emotional toll on parents, describing the experience as a grieving process and emphasizing the day-to-day struggle for survival.
- The episode highlights how personal hardship fueled a mission to create the "Autism Mom Life" community, providing an honest look at the challenges and fostering connection for isolated parents.
Key Concepts
- Behavior as Communication: A central theme is that challenging behaviors in nonverbal or minimally verbal children are not defiance but a form of communication stemming from unmet sensory, emotional, or physical needs.
- The Diagnostic Journey: The path to an autism diagnosis is complex, often involving professional dismissals and harmful "wait and see" approaches, but receiving a name for the challenges can provide immense relief and a clear path forward for families.
- Systemic Failures in Support: The discussion highlights a severe lack of training, resources, and capable services within both the public school system and the therapeutic field, which often leaves families "grasping at straws" and forces parents to act as untrained therapists.
- The Emotional Toll on Parents: Raising a child with severe autism is described as a "grieving process." Parents often face immense emotional strain, isolation, and the feeling of just trying to survive each day.
- Advocacy Through Lived Experience: Joannie’s struggles inspired her to create an online community to show other parents they are not alone and to pursue professional certification (BCBA) to help families who cannot find adequate support.
- Complex Family Dynamics: Co-parenting a child with autism presents unique challenges, especially when rules and structures are inconsistent across households.
Quotes
- At 15:23 - "You have no idea what a relief this is for us... we knew something was different, but we did not have a name for it. So to finally have a name to where we could make a plan..." - Joannie explains that receiving her son's autism diagnosis was a relief, as it provided clarity and a path forward after a long period of uncertainty.
- At 19:32 - "It's not going to be easy. You're going to have days to where you just survive. But you will. You will make it through." - The guest offers emotional encouragement to parents who have just received an autism diagnosis for their child.
- At 20:12 - "We're grasping at straws and we still don't have those things in place. I'm having to be his mom and his therapist with what little parent training I have had." - She describes the current difficulty in finding capable services for her son, forcing her to fill the role of therapist in addition to being his mother.
- At 33:51 - "You are not alone... and so, I remember that's... that's really why I started sharing our life on TikTok, is because I can't be the only one facing this." - She details her motivation for creating her social media platform to build a community for parents who feel isolated.
- At 44:50 - "...if that's all you ever show, then how can you help the people who are living the ugly?" - The guest explains why her social media presence focuses on "the good, the bad, and the ugly," emphasizing the importance of showing the raw reality to truly support others.
Takeaways
- Understand that challenging behavior is a form of communication; focus on identifying the underlying unmet need rather than simply punishing the action.
- Parents must become relentless advocates, as school and therapeutic systems are often ill-equipped to provide the necessary support for children with severe needs.
- The emotional journey of parenting a child with autism is a marathon, not a sprint; it's okay to have days that are purely about survival.
- Finding or creating a community is crucial for overcoming the profound sense of isolation that many parents in this situation experience.
