TSC Talks!

TSC Talks! Trauma 101-A Preview; For Parents of Medically Complex Kids-with Caroline Clyborne, LPC

Caroline Clyborne, LPC gives us the low down on her upcoming webinar, "Trauma 101-For Parents of Medically Complex Kids" on June 25, 2019. Previously on TSC Talks, Episode 27, Caroline gave us an excellent explanation of the different types of trauma, shock trauma & developmental trauma, and how this is relevant to TSC. In this episode, Caroline gives listeners a review of what trauma is, the various and unpredictable ways we can find ourselves dealing with trauma in TSC, and why it's importa...

TSC Talks! Part 3-It's a Wrap. TAND, TANDem, ETC; with Dena Hook, VP of Support Services, TS Alliance

In Part 3 of this three-part series with Dena Hook, VP of Support Services at the TS Alliance, what I want to highlight in this description is our discussion of Tuberous Sclerosis Complex-Associated Neuropsychiatric Disorders (TAND). "TAND describes the interrelated functional and clinical manifestations of brain dysfunction in TSC, including aggressive behaviors, autism spectrum disorder (ASD), intellectual disabilities, psychiatric disorders, neuropsychological deficits, as well as school a...

TSC Talks! Dedicated, Dynamic Dena! Part 2; Creation, Implementation & Development of Volunteer Programs at the TS Alliance

In Part 2, Dena discusses crossing paths with Kari Rosbeck (TS Alliance President) and how she got her first position with the TS Alliance, moved to DC and never looked back. She outlines the development of the volunteer programs she initiated, and established, her process in recruiting and retaining a large volunteer network and the importance throughout of building relationships. Dena is and has been a lifeline for so many in the TSC community and her ability to continue to recruit high cal...

TSC Talks! Dedicated, Dynamic Dena! Part 1; Her Early Career; Dena Hook, VP of Support Services, with the TS Alliance

The TSC world famous & beloved Dena Hook, Vice President of Support Services at the TS Alliance comes on the podcast to discuss, well, a lot. This is Part 1 of our conversation and Dena walks us through her history right up until she started working at the TS Alliance in 2007. Dena shares her experience advocating for her son with severe dyslexia in the early years of special needs legislation and how that inspired & launched her career in advocacy. She describes that it was a time when bei...

TSC Talks! The Benefits of Community Connection, Turning the Tables on TSC with Emilie Peters

My guest, Emilie Peters, hailing from Oklahoma, is a Junior Leader with the TS Alliance, co-facilitator for the new TSC Young Adult Connect Group, and just received her Associates Degree from Tulsa Community College. She gives a gripping personal account of her experience with a Tuberous Sclerosis Complex diagnosis from awareness of having the condition in 8th grade to current day. She narrates some painful experiences dealing with seizures, including one particularly heart-wrenching experien...

TSC Talks; "Bring on the Rain", Part 3- Affecting Systemic Change, with Julie Comeaux, Education Parent Mentor, Advocate & TSC Mom

In this final segment, Julie goes into detail discussing her son's progress once he became eligible through a waiver funded by the Louisiana Department of Health’s Office for Citizens with Developmental Disabilities. Julie was able to hire a Direct Support Professional of her own choosing to work one on one in the home, community, and more. Over time, her son was able to lessen the grip of a narrow focused interest/obsession with trains for which Julie and her family had gone to extremes in ...

TSC Talks; "Bring on the Rain", Part 2- Affecting Systemic Change, with Julie Comeaux, Education Parent Mentor, Advocate & TSC Mom

In Part 2 of this 3 part episode, Julie Comeaux gives us more details on the events that happened with her son leading up to filing a systemic complaint as well as having one filed against her. This ultimately led to filing a systemic complaint against the state department of education. She ended up taking her son out of the school system to homeschool. Julie describes the tools she used, including Ross Greene's methods, the decision to start psychiatric medication, and more. Julie exemplif...

TSC Talks; "Bring on the Rain"; Affecting Systemic Change, with Julie Comeaux, Education Parent Mentor, Advocate & TSC Mom

In Part 1 of this series, Julie Comeaux begins to give an inside look at her experiences in the education system in Louisiana with her son that has TSC. She has attended multiple parent training events on IEP, 504, Transition, and SPED Law 101 and believes that parents can be educated to be the best voice possible for their children, sometimes, the only voice! Stay tuned for more detail on this rocky ride with misunderstanding, fear, and ignorance, in this case in the local school district, t...

TSC Talks; The Tidal Waves of TSC; Part 2 Strength Under Pressure, with Chelsea Holman

Continuing our conversation from Part 1, Chelsea talks a bit about difficulties with the local school system, coping with stigma, mental health issues, seeking support, finding the moments and living them, rocking out to AC/DC, thriving with Thrive nutrition and more! (music by www.bensound.com) Become a supporter of this podcast: https://www.spreaker.com/podcast/tsc-talks--1666046/support.

TSC Talks; The Tidal Waves of TSC; Taking it A Day at A Time & Making it Work, Part 1 with TSC Mom, Chelsea Holman

My guest, Chelsea Holman, is a TSC Mom from Nevada. Impacted personally by TSC, having a son, and various other family members affected with the diagnosis, Chelsea gives a raw look at receiving a diagnosis later in life, managing and reigning in chaos with medications, diet issues, depression, judgments from outsiders, amazing resolution of kidney issues, using CBD oil, angiofibromas, doctor run around, and more. This is part 1 of a 2 part episode. Throughout, Chelsea shares from her heart a...

TSC Talks; The Therapy of Theater, "Skuby Talk", & Comedy for a Cure with Alex Skuby, Actor/Podcaster

Alex Skuby, Actor, Co Hosted the recent Comedy for A Cure Fundraiser for the TS Alliance and was kind enough to come on TSC Talks, share some laughs and give me the low down on life. He shares from his early years growing up in NJ, how he got into acting, by taking Acting 101 in college on a whim, falling in love with acting, it's therapeutic value, moving to Chicago in 1996 to pursue a career in acting, then moving to LA in 1998, landing some regular roles on TV series, particularly as Carri...

TSC Talks; "No Young Adult with TSC Fights Alone", with TS Alliance Junior Leader & Young Adult Advocate, Brianna Johnson

My guest Briana Johnson is 21 years old and lives in Scottsdale Arizona. She'll be graduating this month from Grand Canyon University with a bachelors degree in marketing. Over the past few months, she had the opportunity to be a national Junior Leader for the TS Alliance and represent Arizona advocating in DC this past March. She was diagnosed with Tuberous Sclerosis Complex at age 3, initially with skin symptoms. Brianna discusses the challenges related to transitioning to adult care, kid...

TSC Talks! Living It; Giving Everything But Up! Lauren Shores Shillinger, TSC Mom, Advocate & a TS Alliance Volunteer of the Year

Lauren Shores Shillinger was a dynamic, enthusiastic guest, ready to share her lived experience as a TSC Mom, Advocate and Chair of TS Alliance of Maryland. She was recently named one of four recipients of the TS Alliance Volunteer of the Year Award for 2018! After a 12-year career in the electronic healthcare industry when her daughter Brynleigh was born she became a stay at home mom. Brynleigh was diagnosed at 9 1/2 months with TSC and even with her electronic healthcare background had nev...

TSC Talks; Triathlons, Transition and TSC with Reiko Donato, TSC Mom, Ironman Triathlete, Chair TS Alliance GA

Reiko Donato, TSC Mom, Brand Ambassador at Coeur Sports, Chair of the TS Alliance of Atlanta and past TS Alliance Board of Directors Member, walks me thru the timeline from diagnosis of her daughter thru the current day. She details the process of transition (transition planning is a formal process for helping kids with IEPs figure out what they want to do after high school and how to get there)and elaborates on a new program in her home state of Georgia called Transition Academy. Transition...

TSC Talks; "Vocatus atque non vocatus, Deus aderit.” with Grassroots TSC Advocate & Griffin's Mom, Debora Moritz

Debora Moritz is a Grassroots Advocate, Chair of TS Alliance of Arizona, Member of the Government Relations Committee, and most importantly "just Griffin's mom trying to make things better for him and few other folks along the way." From diagnosis of TSC at 5 months, vigabatrin failure, ACTH treatment success, early frustrations with lack of knowledge, Debora kept asking questions everywhere she went with Griffin. Leaving no stone unturned in terms of trying anything and everything that she ...

TSC Talks; Closing the Deal. with TSC Mom, Blogger & TSC Advocate Heather Lens as She Turns No to Yes in Congress & Life

In this episode of TSC Talks, https://www.spreaker.com/episode/17404406 my guest Heather Lens shares from her heart about the lonely day when she first received the Tuberous Sclerosis Complex diagnosis in her then-5 month old daughter Madilyn and not wanting to leave the hospital, facing a multitude of daunting unknowns to the cascading events that followed; infantile spasms, challenges with seizure control, brain surgery, kidney involvement and more. She gives a gripping account of not only...

TSC Talks; March on Capitol Hill 2019 Mastermind! TS Alliance Manager of Research & Global Affairs, Katie Smith

In this episode, my guest Katie Smith, Manager of Research and Global Affairs at TS Alliance discusses with me in detail, just how she coordinates March on Capitol Hill every year to advocate for federal funding for the Tuberous Sclerosis Complex Research Program (TSCRP). She gives an inside look at the process of organizing volunteers from across the country for this gargantuan undertaking as well as mentions the whats and whys of follow up with our Congresspeople that's so important now th...

TSC Talks; Steering the Ship with Passion & Purpose; TS Alliance President & CEO, Kari Luther Rosbeck

Kari Luther Rosbeck, President and CEO of the TS Alliance since 2007, has masterfully steered the ship from the early days where “all we could do was hold the hands of parents as they went thru the struggle to today where we have drugs that shrink TSC tumors and are starting our first trial aimed at preventing epilepsy from ever developing in infants with TSC.” In this personal yet powerful episode, we discuss how the untimely death of her infant daughter to SIDS, opened her eyes to a yearnin...

TSC Talks; "Igniting the Flame of Infinite Potential for the Human Spirit" with Jackie Woodside

Jackie Woodside, certified (CPC, LICSW) and a best-selling author, TEDx speaker, radio and television personality and seminar leader who is passionate about expanding the edge of human potential, kindly granted TSC Talks this interview. She was willing to answer the more difficult questions about her past; overcoming much adversity to get to where she is today. Jackie also happens to be a special needs mom and shares her experience adopting a child with significant challenges and discusses ...

TSC Talks; Everything is Broken. Trauma, TSC & Me. Family Impact, Survival and Hope with 22 yr. Grizzled TSC Vet & Mom, Jill

In this episode, TSC Talks Audio Editor Interviews grizzled TSC veteran, Jill Woodworth on what happened, what she learned, who she met and what's next. How understanding the impact of trauma has been the key that unlocked the doors to the integration of past experience, with present reality and how finding a way to have some quality of life in the midst of much uncertainty has been the motivating factor for developing the podcast. From diagnosis of TSC 3 times to the present day, there is s...

TSC Talks; Episode 30, Riding the Waves of TSC & TAND, an Update with Marlo, TSC Mom & Past Chair of the TS Alliance of New England

Marlo Grolnic, TSC Mom, past chair of the Tuberous Sclerosis Alliance of New England and previous guest on TSC TALKS in September 2018, takes time out of her day to give us an update on how her son's adjusted to an out of district placement he had just started when we spoke in the fall. She elaborates on how this adjustment has been for the family, as well as describing improvements in TAND related behavior since we last spoke. TAND (tuberous sclerosis associated neuropsychiatric disorders)...

TSC Talks; Episode 29, Charting a Course Home. TSC Mom, Heather Little, Describes How She's Managed & Overcome Infinite Challenges with TSC.

From a mismanaged initial TSC diagnosis in her daughter to struggles getting treatment for Infantile Spasms, challenges finding an adequate setting for brain surgery, educational and behavioral issues as well as personal and family impact, Heather Little has experienced much of what TSC care and management involves. She shares honestly in a clear & articulate manner that despite repeated obstacles & frustrations beyond belief, quality of life, peace of mind and hope are possible! This episo...

TSC Talks; Episode 28, Ripple. A Discussion with Danny Van Leeuwen, MPH, RN, CPHQ, Patient and Caregiver Activist, Writer, Speaker & More!

Danny graciously put down one of his many "health hats" and came on the podcast to share his wisdom and deep knowledge of the inner workings of the medical industrial complex, aka healthcare system, from the many hats he's worn within the healthcare system across his lifetime. In turn, TSC management across a lifetime requires one to wear many "hats" as well. We discussed transitions and autonomy as it relates to moving from pediatric care to adult care in the medical/mental health/social s...

TSC Talks; Episode 27, Invincible Summer! On TSC & Trauma with Body Oriented Psychotherapist & TSC Mom Caroline Ramirez

In this fascinating and inspiring episode, Caroline Ramirez, TSC Mom & Licensed Professional Counselor discusses the impact of different types of trauma, shock trauma & developmental trauma, and how this is relevant to TSC. She discusses how we as parents can work with our children, to mitigate traumatic experiences which are often a part of TSC management and care and shares examples from her personal experience and successes with her daughter who had brain surgery at 15 months of age and h...

TSC Talks; Episode 26, The Road Out; Exceptional Challenges on the TSC Path with PhD Psychotherapist & Special Needs Mom, Ginger Sullivan

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 ...

TSC Talks; Episode 25; The Epilepsy Experience; from Diagnosis to Acceptance and Activism! With Saaim Ali

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 ...

TSC Talks; Episode 24, Weed Indeed! Drop Seizures, Cannabis Advocacy and More with Becky Gaunt

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 po...

TSC Talks; Episode 23, Rebecca Thereault. Joy and Sorrow on the TSC Journey, "Laughing at the Insanity of Life"

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...

TSC Talks; Episode 22, PTSD in Parents and Caregivers with Hillary Savoie, "Listen to us, do not turn the other way"

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, muc...

TSC TALKS, Episode 21; A Moment with MaryEllen Lacy, 22 year old with TSC; Update on Shared Living Sitch, New Program, ETC

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 w...

TSC TALKS, Episode 20; "Strange Things", aka Infantile Spasms in TSC with Tarra Hassin. A Primer on Perseverance, Perception and Acceptance

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 ...

TSC TALKS, Episode 19; Shannon Grandia, TSC Mom, Spouse, Advocate & Teacher; Finding Joy on the TSC Path

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 ...

TSC TALKS Episode 18, Claire Despres, Shared Living Provider for MaryEllen Lacy, young adult with TSC

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. Become a supporter of this podcast: https://www.spreaker.com/podcast/tsc-talks--1666046/support.

TSC TALKS, Episode 17; Going Local! Finding the Middle Ground in Special Education with Stacey Jackson

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 misundersto...

TSC TALKS. Episode 16; Hope WINS! Meghan Wilson, Cameran & TeamCamBam

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! Become a supporter of this podcast: https://www.spreaker.com/podcast/...

TSC TALKS: Episode 15, Jill Talks: Team TSC and the big RACE! with guest host, Dorina Leslie

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. Become a supporter of this podcast: https://www.spreaker.com/podcast/tsc-talks--1666046/support.

TSC Talks: Episode 14, Kristina, Occupational Therapist, "The Importance of Hope in Early Intervention Services"

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! Become a supporter of this podcast: https://www.spreaker.com/podcast/tsc-talks--1666046/support.

TSC TALKS: Episode 13, Mary Comeau - There's Always Hope!

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 Become a supporter of this podcast: https://www.spreaker.com/podcast/tsc-talks--1666046/support.

TSC TALKS: : Episode 12, Adriana Piltz & Nicky's Garden of Hope

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" Become a supporter of this podcast: https://www.spreaker.com/...

TSC TALKS: Episode 11: Woody Seagren, Role of a School Psychologist re: TSC

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. Become a supporter of this podcast: https://www.spreaker.com/podcast/tsc-talks--1666046/support.

TSC TALKS Episode 10 TSC Mom Renée -A Canadian Perspective w/non verbal son.

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. Become a supporter of this podcast: https://www.spreaker.com/podcast/tsc-talks--1666046/support.

TSC TALKS: Episode 8: TSC Mom Marlo, The Journey Continues

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. Become a supporter of this podcast: https://www.spreaker.com/podcast/tsc-talks--1666046/support.

TSC TALKS: Episode 9: Dorina Leslie, finding True North; TSC & Mental Health

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". Become a supporter of this podcast: https://www.spreaker.com/podcast/tsc-talks--1666046/support.

TSC TALKS, Episode 7: Justin Leslie, Hard work and Acceptance, dedicated to the memory of Keith Hall

Justin, 20, URI student. young adult living with TSC. Spoke of his diagnosis, the impact, manifestations, inspiration, influencers, Keith Hall and others.  Become a supporter of this podcast: https://www.spreaker.com/podcast/tsc-talks--1666046/support.

TSC TALKS, Episode 6, MaryEllen, 22 Year Old, Talks About Shared Living

22 year old with tuberous sclerosis complex discusses move to shared living Become a supporter of this podcast: https://www.spreaker.com/podcast/tsc-talks--1666046/support.

TSC TALKS, Episode 5, Interview with Jack Lacy

Jill Woodworth chats with her son Jack, age 14, about what it's like to have TSC. Become a supporter of this podcast: https://www.spreaker.com/podcast/tsc-talks--1666046/support.

TSC Talks, Episode 4, Part 2. The Interview With Mary Ellen Lacy

Mary Ellen Lacy talks about the end of high school and beyond with Mom. Become a supporter of this podcast: https://www.spreaker.com/podcast/tsc-talks--1666046/support.

TSC TALKS, Episode 3, The Interview...Mary Ellen Lacy!