Episode 185 | J.R.’s Story- A son with a rare disease

Podcast Show Notes

If you’re feeling overwhelmed, exhausted, and defeated because no matter how hard you try, your child’s severe special needs are still causing constant challenges and obstacles in your daily life, then you are not alone! Despite your tireless efforts, you may find that your child’s progress is slower than expected, therapies and interventions may not be yielding the desired results, and you often feel unsupported in this journey. The emotional toll of watching your child struggle while feeling powerless to make significant improvements can be incredibly painful, but remember that there are other parents out there who understand and are going through similar experiences.

In the early intervention, there’s so much you can do, but sometimes it helps and sometimes it doesn’t. It’s really set up for the kids that have the privilege of a brain that will change, that have the privilege of a brain that is going to respond to these treatments. And that’s how humans develop. – J.R.

My special guest is J.R.

We introduce you to J.R., a living testament to the power of resilience, understanding, and love in parenting. Steeped in the world of academia, J.R. spent her early years as a successful scientist specializing in molecular biology and human genetics. However, her journey meandered from the predictable world of biochemistry to the unpredictable, emotion-laden landscape of motherhood. Her middle son’s severe diagnosis demanded a life-shift. Despite the difficult decision of group home care, J.R. tenaciously continued her quest for understanding and support. Now a dedicated volunteer with the SynGAP Research Fund, she translates her personal experiences and academic expertise into actionable aid for parents and children dealing with similar challenges.

This is J.R.’s story:

Meet J.R., a dedicated mother of three adult sons who drew upon her background in molecular biology and genetics to help navigate the complex journey of raising a child with special needs. The day-to-day dynamics of her family life took an unexpected turn when her middle son, Joey, was diagnosed with SynGAP1, a genetic disorder characterized by intellectual disability, delayed development, and severe seizures. This diagnosis came only when Joey turned sixteen, after years of uncertainty and numerous medical consults. Despite the challenges faced, J.R. remained steadfast and resilient, advocating for her son and seeking out innovative therapeutic strategies that could enhance his life. Utilizing puppets as an interactive tool, she worked tirelessly to foster an environment of learning and growth, tailored to Joey’s capabilities. J.R.’s story is an inspiring testament to the power of maternal love, tenacity, and the resilience of the human spirit.

 

In this episode, you will be able to:

  • Understand the unique challenges and triumphs that come along with raising a child with profound special needs.
  • Find out the difficulties encountered in the pursuit of a diagnosis, and how this can shape your course of action.
  • Discern the importance of therapy adjustments to meet your child’s unique developmental needs.
  • Recognize the criticality of self-love and a robust support system for the longevity of caregiving.
  • Hear a fascinating account of writing and finishing a book that encompasses the journey of a special needs child.

 

Creating a supportive community can provide solace and strength to individuals grappling with unique challenges. Such communities foster a space for shared experiences and mutual understanding that can be reassuring. They offer a platform where individuals can express their concerns and fears, find relatability, and get empowered with each other’s stories.

In her conversation with Katie, J.R. underscores the importance of such a supportive community. They applaud Katie for her efforts in building a community for parents of special needs children, who often feel alone in their journey. J.R. believes in the power of shared experiences and giving parents a space to find others who can relate to what they are going through, and praises Katie for doing exactly that.

 

Writing a book can be a challenging process that demands perseverance, patience, and adaptability. One might find themself caught in a cycle of writing, pausing, and revising, which can be painstaking and frustrate progress. While external pressure to finish the work can be significant, the process of writing should not be rushed. Timing is crucial, as it allows the narrative to develop naturally. The completion of a book is not merely the end goal but a juncture in a creative journey that reflects a certain period in the author’s life.

In her candid chat with Katie, J.R. sheds light on their struggle of completing her book. The writing process was marked by periods of frustration and inactivity, despite encouragement from others to finish. She felt a lack of motivation, often misconstruing it as laziness. But the game-changer came as J.R. realized the narrative had evolved when her son Joey turned 21. It dawned upon her that the story they were trying to narrate had understatedly morphed over time, and this insight enabled her to finally complete the book.

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The resources mentioned in this episode are:

  • Consider joining the SynGAP Research Fund, an organization that JR volunteers with, to connect with others in the community and support research efforts for SynGAP One.
  • Explore early intervention options for children with developmental delays and disabilities, recognizing that not all interventions may be effective for every child.
  • Seek expert opinions and guidance from specialists in the field to better understand your child’s specific needs and explore potential therapies or treatments.
  • Take time to mourn the loss of the expectations you may have had for your child and focus on understanding and accepting who they are.
  • Prioritize self-care and find a balance between caring for your child with complex needs and your other children.
  • Advocate for your child’s needs and trust your instincts as a parent, even when faced with conflicting advice or uncertainty.
  • Consider exploring alternative living arrangements, such as group homes, if it is in the best interest of your child’s safety and well-being.
  • Connect with support groups or online communities that focus on genetics, behaviors, sensory issues, or emotional regulation

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