The Unseen Battle: Chronic Illness and Autism Unveiled

by Michele A. Wilson

Raising a child on the autism spectrum, intertwined with special medical needs, offers an experience filled with a unique set of challenges, moments of unexpected joy, and deep, meaningful connections.

My journey as a mother to an autistic son who also requires special medical attention has been an enlightening adventure, a continuous learning and growing process alongside my child.

The observance of Autism Awareness Month acts as a heartfelt reminder of the hurdles faced by those with autism.

A defining moment that reshaped our lives occurred on Thursday, October 15, 2009. This date is etched in my memory, marking the day our lives took a dramatic turn. My 6-year-old son was admitted to UCLA hospital in a critical condition, facing a medical mystery that left doctors baffled.

This event catapulted me into the dual role of a full-time caregiver and an entrepreneur. as I wanted to stay by my son's side throughout his hospitalization while simultaneously launching a business from the confines of his hospital room. Fifteen years later on, this experience has imparted invaluable lessons about the intricacies of mothering a special needs child and managing multiple homebased businesses.

RECOGNIZING THE SIGNS:

As my son Jovaan grew older, I began to notice other underlying issues, not realizing they were signs of autism that seemed to extend beyond his chronic illness.

For example, at an early age, he was toe-walking, and over time, his vibrant personality began to quiet and become reserved. Observing his struggles to communicate his feelings, especially when in physical pain, i. It became apparent that his health challenges, compounded by numerous surgeries and extended hospital stays, hindered his regular school attendance, impacting his social and educational development. (continued next page)

This realization led to the difficult yet necessary decision to homeschool Jovaan, allowing him to learn at his own pace in an environment free from the pressures and the limitations of traditional schooling.

Over the years, we received multiple diagnoses, including Chronic Intestinal PseudoObstruction, Autism, Cognitive Developmental Delay Disorder, Noonan syndrome-like disorder, and loose anagen hair syndrome. These diagnoses served not merely as labels but as keys to unlocking a better understanding of Jovaan, enabling us to customize the support and interventions he needed to flourish. Navigating through the maze of school systems and advocating for his needs, we were blessed when a counselor at the Department of Rehabilitation at the age of 17 years old recognized Jovaan’s symptoms and recommended that we get him tested for autism. This was a pivotal moment in our journey toward ensuring that Jovaan could achieve his full potential.

With the support of Applied Behavior Analysis (ABA) therapy and the Tri-Counties Regional Center, Jovaan rediscovered his voice and, with it, a newfound confidence. This breakthrough allowed him to engage more fully with the community, transforming tasks like grocery shopping into manageable, even enjoyable activities. As he stands on the threshold of adulthood, exploring potential career paths and educational opportunities, I am filled with pride at his resilience and eagerness to embrace life's challenges.

As we observe Autism Awareness Month, here are a few insights for other parents facing comparable challenges:

1. Embrace flexibility

2. Seek and accept support

3. Integrate your passions into your business

Managing the dual roles of caregiver and entrepreneur is an overwhelming challenge, but it is one that can lead to profound fulfillment and success.

I pray that our story is an inspiration of hope, highlighting the impact of transforming personal challenges into opportunities for growth and purpose.

Michele A. Wilson, TV Host & Executive Director of the Mompreneur Conversations™ Show, A division of Velocity Global Group Inc.

Business phone: (307) 459-2294

Email: Hello@MompreneurConversationsShow.com