Rutland mother offers frank talk around the realities of raising kids with physical, intellectual and emotional challenges.

Like many parents of children with disabilities, Jill Woodworth’s life has been filled with plenty of highs and lows. As those who have been there will attest, it includes long days and lots of time spent wading through the complexities of caring for a child with extraordinary needs.

 

Woodworth is a Rutland mother of five children, three of whom have Tuberous Sclerosis Complex, which is a rare genetic disease that causes non-cancerous tumors to grow in the brain and on other vital organs. Those with TSC may also have other symptoms, including seizures, intellectual disability, developmental delay, behavioral problems, skin abnormalities, and lung and kidney disease.

 

When Jill’s eldest daughter, MaryEllen, who has TSC and is on the autism spectrum, moved out to live in a group setting, Woodworth found it impacted her in ways she didn’t expect after years as her caregiver.

 

“Her moving out really was the impetus for me to kind of look at this huge gap in my life that I devoted to TSC,” said Woodworth. “I was kind of desperate and thinking ‘What am I going to do? How am I going to maintain my connection with lived experience yet take a step back from being as involved in what felt like an extremely personal way?’”

 

The answer was launching the podcast TSC Talks, an interview-style show where Woodworth dives in-depth on various topics with people who have a TSC diagnosis, an intellectual disability or Autism. The show can also include perspective from parents and caregivers.

 

“What I want to see happen is that we flesh out our stories, our issues, our successes, failures, frustrations, in order to get all the cards on the table.  If we don’t start talking about it, and really letting others know how difficult this is, we will not be able to affect adequate change,” she said. 

 

Woodworth said it is especially critical to be frank because navigating life with a disability, or as a caregiver of a person with a disability, is a daily challenge that can be confusing, exhausting and beyond difficult. Episodes cover a wide territory of topics, such as mental health and behavioral issues related to a neuropsychiatric disorder, school-related issues, advocacy, dealing with the medical industry and the social or emotional issues related to dealing with a chronic disease.

 

“If one has been doing this for any length of time, one has come up against multiple obstacles while attempting to juggle and manage the multiple disconnects between the medical, mental health, social services and grassroots community,” said Woodworth. “Lots of people in the patient-caregiver community are yacking about it on various social media platforms, separate pages, and in fits and starts. But few are talking out loud about it in such a way that the patient or caregiver voice can affect and influence the overall ability of those struggling to accept, to understand and be heard, and validated.”

 

Still in the earlier stages of development, Woodworth is working to grow her listeners and spread the word about the podcast’s mission. TSC Talks can be found on most major podcast platforms or by simply going to Woodworth’s page at https://tsctalks.com . 

 






Joan Goodchild is a veteran writer and editor and mom of two living in Central Massachusetts.