Category: autism

TSC Talks! Final podcast~Wrapping it Up & Thanks

Jill wraps up the podcast! I started in 2016 by interviewing my kids and how they were affected by Tuberous Sclerosis Complex. It was absolutely divine inspiration from the start and branched out shortly after to interviewing community members and other professionals who worked with those affected. From there, I explored many different topics, providing information and resources in interview form, all with relevance to the individuals and/or parents/caregivers affected by a chronic illness like TSC.

Pushing the boundaries of what was deemed “safe and effective” by our medical system, I continued to put the info out there based on my own lived experience as a parent/caregiver living and dealing with what I’d come to discover is CPTSD if you want to use a label. It was my vision and still is that all “remedies” for improving the quality of life of all involved in the wheels of chronic illness, particularly one such as TSC which affects all the vital body organs, will be an option for all.

Why should we hold back the river when there are so many speaking about how their lives have been impacted by sharing their truths, sharing what’s worked for them and what potentially might help another ease the very real and almost daily traumas of attempting to live with an open heart and navigate our inverted systems of care?

Many of these podcasts go against the grain of what people are comfortable hearing. There are always positive takeaways but there are some heavy heavy experiences that people are walking through and talking about and must be given voice. I think through honest conversation, and taking full responsibility for one’s reactions to other’s sharing from their most painful, heart-wrenching moments, we can begin to hear each other once again at least long enough to realize, we’re all having vastly different experiences yet we all long to be here now, safe, loved, whole, home.

Thanks for tuning in and being here there and everywhere. It’s been the pleasure of a lifetime to have the opportunity to create and share this work.

Love Jill

Points of Light~Lisa Smith, Advocate, Foster Parent, Mom “All 100 Sheep”

I recently had the distinct pleasure of interviewing Lisa Smith recently on TSC Talks. I met Lisa through a mutual friend, as is explained in the podcast. I was thrilled to do a podcast with another special needs parent and local to Massachusetts. Lisa is a parent of 22 years old Nick, who experiences nonverbal autism, has adopted several children, and over the years has fostered 27. During our interview not only was Lisa able to draw from and articulate profound experiences and topics in such a way as to not only connect them to her lived experience, but she was also able to illustrate how she’s taken the time to integrate and utilize all of it to further evolve as a soul but to also facilitate trust, healing, and connection for all her children, biological, adopted and fostered. Her words tell the story, her faith guides her. One of the most important points of our discussion was the realization that it is not these children that are “lucky to have her,” but it is she that is lucky to have them.

As a special needs parent myself, this awareness was a true turning point in my understanding of this divine assignment where I became the student and realized my children are my teachers, one that Lisa feels and experiences every day.

“It’s biblical, she said at one point “And when I began to read the Bible, I had learned that some of my actual walks in life, were very biblical… There’s a story that says, God got the 99 sheep, but there was one on the hill. He went back for that one. Most people in life. So God has designed me through my journey, not to forget the one.”

“Presence, presence, and presence. And to me? Be present. People always say things like, oh, if I win the lottery, I will do that. And I always tell people all the time I won the lottery five times, five children and people say, oh, they’re so lucky to have you, but really….How do I know that I’m going to take care of my disabled son someday? Right? How do I know they’re not there to help me when I become disabled someday? We do not know, you know, so we, you know, and, and we don’t do it for those selfish reasons. So, we don’t do anything to get things, you know, and, and, you know, we do things because that’s who we are and that’s our heart.”

I appreciated this podcast so much and hope you will too. I feel it was put in front of me by my higher self, as sound bite after sound bite so many of Lisa’s words not only related to me personally but also inspired and challenged me. Her faith in God is huge and expansive but she shares honestly the hard truths she’s faced personally to get to where she is now. Thanks, Lisa, for all the ways you are serving a higher calling and being willing to share your journey with me and this audience.

An article about Lisa Smith: https://www.wickedlocal.com/story/archive/2012/04/27/taunton-mom-using-what-she/38199711007/

Link to the transcript and/or timestamps to be added!