Jill Woodworth

Ph.D. Psychotherapist, Writer, and Special Needs Mom, Ginger Sullivan, gives us some of her insight, wisdom, and humor gleaned from over 26 years as a therapist in the D.C. area. We discuss the therapeutic process and the exceptional challenges to the psychological well being of special needs parents/caregivers managing chronic ongoing stress. She details how this chronic stress can impact our relationships with our children, ourselves, and our partners. Finally, she shares some DIY tips on staying psychologically healthy, the use of medications in treatment and the range of treatment options available. I was grateful to hang out briefly via audio with my "old" college friend and glean some gems from the goldmine of her vast lived and learned experience.

Listen to this articulate and inspiring young lady, Saaim Ali, as she gives us a gripping inside look at the experience of having epilepsy. From diagnosis at age 7, thru the current day as a computer science major near Buffalo, NY, she discusses how she came to accept her diagnosis, difficulties in school, overcoming mental health challenges related to epilepsy, interacting with doctors as she takes responsibility and utilizes discipline and hard work to meet the many challenges a diagnosis such as epilepsy can present. She details how much it means to be recognized for accomplishments, not getting caught in a downward spiral of depression, seeking mental health support and finding joy and meaning in her life. Today, she uses her experiences overcoming the many frustrations of the "invisible" disease epilepsy to inspire and help others in her college setting.

Writer, Advocate, TSC Mom, Rebecca Gaunt shares her experience of TSC with her son Connor. She highlights her involvement with Cannabis legislation in GA, after finding it the only treatment adequate to gain control of devastating drop seizures. She shares the frustrations obtaining Cannabis for medical use in GA, as well as the incredible seizure control gained. She also compares effectiveness of Cannabis with and without CBD based FDA approved medication Epidiolex. Additionally, Becky poignantly shares challenges managing mental health issues in relation to TSC,, family impact and support, educational issues and much more.

In this episode Rebecca shares her challenging experiences and incredible advocacy as a TSC Mom, getting an accurate diagnosis of certain TSC manifestations such as seizures, including infantile spasms and autism spectrum disorder. She gives multiple examples of how frustrating managing TSC can be when there are multiple disconnects among doctors and other professionals, even at the same institution, to whom we must turn for help. Rebecca's perseverance in the face of incredulous situations is phenomenal. She also dips into the family impact, coping and her writing. The depth and quality of REbecca's poignant and eloquent writing helps us see the reality of living with both joy and sorrow, on a daily basis, inherent in the TSC journey

Hillary Savoie, writer, advocate, consultant, and most importantly, mother of Esmé, a medically fragile, developmentally delayed child, discusses the impact of PTSD on parents, Her recent article in Romper.com delves into this crucial topic as she explores the impact of PTSD with multiple parents. Our conversation centers around this misunderstood topic, the barriers to seeking help, the damage to relationships the need for the medical community to be cognizant and responsive, and much, much more. Hillary shares how she had to confront her own PTSD in order to make the necessary connections with those impacted to adequately engage and start to bring this hot-button topic to press. Hillary continues to raise awareness and gives multiple suggestions on how we can start to address this topic in our own communities and with those close to us.

In this brief episode, MaryEllen Lacy, 22, an adult living with TSC, gives me an update on her current living situation after moving out last April to Shared Living. I recently interviewed her caregiver Claire in Episode 18. MaryEllen fills us in on how it's going with Claire, as well as at her new program, HMEA. She details her experience with work, volunteer, and social activities as well as other things on her mind. I will mention that MaryEllen is on the autism spectrum and has dealt with PTSD in the course of her lifetime. I'm highlighting both PTSD and Autism as well as PTSD in caregivers among the TSC population as well as elsewhere.

Tarra Hassin gives us an inside look at her experience with her son Colin's TSC diagnosis at 10 weeks old with seizures and how she started to notice "strange things" happening. and that led to IS diagnosis and treatment. We also discuss TS Clinic in Denver, family impact, frustrations and challenges in the healthcare system, and education system. Her advocacy leading to legislation in NM to change the use of restraint in school settings as well as the need for more education and awareness of ABA therapy. Tarra shares her philosophy of acceptance and attitude while on this journey with TSC.

A discussion with Shannon Grandia, wife, mother, first-grade teacher, TS Alliance Volunteer, and Advocate! She shares her experience over the last 19 years with her children, Rylee, Jake and Luke, all affected by TSC as well as spouse Rob who is also affected. Shannon is an incredible human being and the love she has for her family truly permeates this discussion. We chat about diagnoses, manifestations, treatments, family impact and more. Shannon is able to truly understand the importance of acceptance and living in the present. Her choice to focus daily on the positive and cultivate joy in her family is truly inspirational and motivating. While acknowledging the extreme challenges and uncertainty involved in managing this disease she continually expresses gratitude for all the many ways the family has been fortunate, outlining how teamwork, organization, church and community support, TS Alliance involvement, have all contributed to this beautiful life that Shannon and her family live one day at a time.

A day in the life of Shared Living Provider, Claire Despres. We discuss the ins and outs of shared living; the program itself, the process of finding a client, the role of a good case management team, and then we get a glimpse at a day in the life of her client, MaryEllen Lacy. MaryEllen is a young adult living with TSC who has been on the podcast herself.

In this episode, I go local in this discussion of special education with past school committee member and experienced special needs mother, Stacey Jackson. We go in-depth on Stacey's hands-on experience advocating for her daughter, from early intervention to high school and beyond, her experience with mediation, working with your child's IEP team collaboratively for a successful inclusion as well as alternative placements. Stacey also provides us with an inside look at the often misunderstood budget for all education, including special ed. The limitations as well as successes within a rather large regional school district and how working to find solutions that is not only helpful for all involved but cost-effective. Check out https://tsctalks.com and @tsctalks on FB for detailed questions and answers and information discussed!

HOPE WINS. In the words of new TSC Mom Meghan Wilson, "Live the Moments". Meghan talks about her baby Cameran's diagnosis at 2 months, getting seizure control, ketogenic diet, the MGH TS Clinic, and family support with TeamCamBam. #TeamCamBam was made up of multiple family members all running for Cameran, and TS Alliance as part of TeamTSC , in the recent Marine Corp Marathon! Team Cam Bam raised over $30K for TS Alliance!

Previous podcast guest, Dorina Leslie, Interviews host Jill Woodworth on her experience with TSC in her children, impact personally and how this led to her involvement with Marine Corp Marathon TS Alliance, Team TSC as well as origins of TSC Talks podcast, development and motivations.

Kristina Hansson, Occupational Therapist of 25 years discusses her motivation for becoming an OT, Importance of Early Intervention programs, the process of requesting services, her diagnosis of Neurofibromatosis, and much more!

TSC Mom, Mary Comeau shares her nail-biter of an experience with TSC. From potential TSC diagnosis at 20 wks pregnancy, the start of seizures, difficulty with seizure control, keto diet, brain surgery, Early Intervention, Special Ed Teachers, and some success with CBD Oil treatment with TS Clinic at MGH, Boston, MA

A conversation about Adriana's experience with her son Nicky who is 20 and severely affected by TSC and the incredible project she's started called Nicky’s Gardens of Hope. "The pilot project will build our first facility, one that can truly help families with children and adults like Nicky. We will build a permanent home that gives their loved ones peace of mind that their children will be taken care of, even after they are gone"

Woody and I discuss his background and experience, the role of a school psychologist, how parents/students affected by TSC can best make use of services of a school psychologist, the use of labels, advocates, working as a team.

Renée and I go in depth into her journey with her son Aaden who is non-verbal with TSC, diagnosis to current day. Renée gives perspective from Canada on managing TSC, from diagnosis, brain surgery to current day.

Marlo discusses the weight of a TSC diagnosis and all it's implications. From diagnosis during pregnancy to behaviors and school related issues, seizure frustrations, med management, healthcare professionals and more. She narrates the difficulty of living with the uncertainty that can be a part of TSC management and how the family works together to cope.

In this episode, I interview Dorina Leslie, mother of Justin Leslie regarding her experiences with TSC diagnosis as well as mental health issues, and finding one's "True North".

Justin, 20, URI student. young adult living with TSC. Spoke of his diagnosis, the impact, manifestations, inspiration, influencers, Keith Hall and others.