Podcast appearances and mentions of dena hook

In this episode, I tried something different! I used pieces of pertinent audio from 6 past guests, some has been released in previous episodes and some content is from the cutting room floor. I kick it off with gratitude and HUGE thanks to the TSC Community, and the Power of TSC Moms that so inspired this podcast. We are bringing to light our variable issues & challenges managing manifestations of TSC, IDD & Autism. It is almost always complicated, lonely and can be overwhelming at times, yet risking vulnerability to share from our daily lives, has played a role in affecting change. Consider the TAND initiative, the FB TAND group, the recent Trauma 101 webinar, TSC Now podcast, and more have come to fruition over the course of the past year. Listen to these women, all mothers, all impacted differently by TSC -with or without IDD & Autism, but yet still much commonality. It's tough, it's ongoing but we can do it. However one is impacted by TSC, IDD and/or Autism, our lived & learned experience is of value and is worth discussing out loud. These audio clips center around parent/caregiver impact, frustrations with social media, loss of community connection, TAND & our own mental health, and misunderstanding and misinterpretation of family, friends & society at large. Dena Hook wraps it up by letting us know what's happening at the TS Alliance in relation to TAND, etc. Guests in order of audio content are as follows; Caroline Clyborne, Rebecca Thereault, Adriana Piltz, Chelsea Holman, Debora Moritz & wrapping it up with Dena Hook.

In this episode, I tried something different! I used pieces of pertinent audio from 6 past guests, some has been released in previous episodes and some content is from the cutting room floor. I kick it off with gratitude and HUGE thanks to the TSC Community, and the Power of TSC Moms that so inspired this podcast. We are bringing to light our variable issues & challenges managing manifestations of TSC, IDD & Autism. It is almost always complicated, lonely and can be overwhelming at times, yet risking vulnerability to share from our daily lives, has played a role in affecting change. Consider the TAND initiative, the FB TAND group, the recent Trauma 101 webinar, TSC Now podcast, and more have come to fruition over the course of the past year. Listen to these women, all mothers, all impacted differently by TSC -with or without IDD & Autism, but yet still much commonality. It's tough, it's ongoing but we can do it. However one is impacted by TSC, IDD and/or Autism, our lived & learned experience is of value and is worth discussing out loud. These audio clips center around parent/caregiver impact, frustrations with social media, loss of community connection, TAND & our own mental health, and misunderstanding and misinterpretation of family, friends & society at large. Dena Hook wraps it up by letting us know what's happening at the TS Alliance in relation to TAND, etc. Guests in order of audio content are as follows; Caroline Clyborne, Rebecca Thereault, Adriana Piltz, Chelsea Holman, Debora Moritz & wrapping it up with Dena Hook.

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 and occupational difficulties". We discuss the early challenges involved getting doctors to recognize TAND as a manifestation of TSC . For many of us, TAND has been THEE most challenging aspect of TSC care & management with which to contend. Thanks in part to Dena's efforts, we now have a lot of information available to help. The TAND Checklist, which is a helpful screening tool for professionals and "TAND in Education", written by Dena for educators and providing the necessary knowledge & wisdom gleaned from research and her 30 yrs experience working w/school systems. We now have a TAND research project called "The TANDem Project" which will bring together a worldwide team of families affected by TSC, researchers and clinicians to provide scientific evidence for greater TAND intervention and treatment". The impact of Dena Hook's powerful advocacy and fierce devotion on behalf of ALL impacted by a TSC diagnosis is beyond compare and her humble, tireless work has improved the lives of legions of individuals, families who must; wrangle the chaos that TSC care & mgmt can present. The gratitude of the highest order to Dena Hook and her ineffable contribution to improving the lives of those living with and lessening the impact of this complicated and often devastating medical disorder. (Uplifting Funk Pop Instrumental by taiiga | https://soundcloud.com/paavoilves Music promoted by https://www.free-stock-music.com Creative Commons Attribution-ShareAlike 3.0 Unported https://creativecommons.org/licenses/by-sa/3.0/deed.en_US)

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 and occupational difficulties". We discuss the early challenges involved getting doctors to recognize TAND as a manifestation of TSC . For many of us, TAND has been THEE most challenging aspect of TSC care & management with which to contend. Thanks in part to Dena's efforts, we now have a lot of information available to help. The TAND Checklist, which is a helpful screening tool for professionals and "TAND in Education", written by Dena for educators and providing the necessary knowledge & wisdom gleaned from research and her 30 yrs experience working w/school systems. We now have a TAND research project called "The TANDem Project" which will bring together a worldwide team of families affected by TSC, researchers and clinicians to provide scientific evidence for greater TAND intervention and treatment". The impact of Dena Hook's powerful advocacy and fierce devotion on behalf of ALL impacted by a TSC diagnosis is beyond compare and her humble, tireless work has improved the lives of legions of individuals, families who must; wrangle the chaos that TSC care & mgmt can present. The gratitude of the highest order to Dena Hook and her ineffable contribution to improving the lives of those living with and lessening the impact of this complicated and often devastating medical disorder. (Uplifting Funk Pop Instrumental by taiiga | https://soundcloud.com/paavoilvesMusic promoted by https://www.free-stock-music.comCreative Commons Attribution-ShareAlike 3.0 Unportedhttps://creativecommons.org/licenses/by-sa/3.0/deed.en_US)

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 being "in the building" for a kid with special needs, was about as much support as was given. Dena was Technical Assistant Coordinator for the National Parent Training and Information Center (PACER) for over 6 years training educational advocates throughout the country. She worked with the Office of Special Education Programs (OSEP) during the reauthorization of the Individuals with Disabilities Education Act in 1997. A published author through Incentive Publication, she wrote: “Success with IEPs” and “An IEP Writing Tool” for teachers and school administrators. During her time as CEO of Family and Children First, she ran Part C of the Individuals with Disabilities Education Act Early Childhood Program, Truancy Mediation, and Strengthening Families a Mental Health and Drug Addiction Program for Marion County in Ohio. She is certified as Special Education Mediator through the Juvenile Justice Center of Atlanta and as a Truancy Mediator through the Ohio Supreme Court. On a personal level, Dena also talks about leaving her job at PACER & working with OSEP to return to Ohio to aid her mother and how despite leaving an esteemed position, she was able to use her experience as a parent, advocate & then administrator to rise once again to leadership at Family & Children First in her home state of Ohio. Buckle up, there's a lot here and more on the way! (music credit: https://www.purple-planet.com)

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 being "in the building" for a kid with special needs, was about as much support as was given. Dena was Technical Assistant Coordinator for the National Parent Training and Information Center (PACER) for over 6 years training educational advocates throughout the country. She worked with the Office of Special Education Programs (OSEP) during the reauthorization of the Individuals with Disabilities Education Act in 1997. A published author through Incentive Publication, she wrote: “Success with IEPs” and “An IEP Writing Tool” for teachers and school administrators. During her time as CEO of Family and Children First, she ran Part C of the Individuals with Disabilities Education Act Early Childhood Program, Truancy Mediation, and Strengthening Families a Mental Health and Drug Addiction Program for Marion County in Ohio. She is certified as Special Education Mediator through the Juvenile Justice Center of Atlanta and as a Truancy Mediator through the Ohio Supreme Court. On a personal level, Dena also talks about leaving her job at PACER & working with OSEP to return to Ohio to aid her mother and how despite leaving an esteemed position, she was able to use her experience as a parent, advocate & then administrator to rise once again to leadership at Family & Children First in her home state of Ohio. Buckle up, there's a lot here and more on the way! (music credit: https://www.purple-planet.com)