LOMAH Disability Podcast

Latest Episodes:

#126 - Complicated Behaviors Series Recap Oct 13, 2020

Show notes

The LOMAH Podcast publishes 10 - 12 episodes with expert guests on a single topic creating an in depth topical series. This final episode in the Complicated Behaviors Series provides a quick overview and guest clips from each interview as well as what is coming next.

Episodes in the Complicated Behavior Series Included:

Episode 115 - Moving From What to Why

Episode 116 - Touching of Self and Others

Episode 117 - Vocal and Verbal Stimming

Episode 118 - Motivation and Masking on the Spectrum

Episode 119 - Hyperphagia (Food Obsession)

Episode 120 - Families in Crisis

Episode 121 - Addressing the Disability Advocacy Divide

Episode 122 - Fecal Smearing and Ingesting

Episode 123 - Co-Occurring Conditions and Crisis Intervention

Episode 124 - Medication as a Treatment Tool for Emotional and Behavioral Challenges

Episode 125 - Parenting Support From the Actually Autistic Community

#125 - Parenting Support From the Actually Autistic Community Oct 06, 2020

Show notes

Many diagnosed with autism are eager to come alongside parents to offer support and insight on how our children may be processing the world. In this episode we gain unique perspective from an autistic woman who is also a parent with autistic children. This final episode in our challenging behaviors series finds us coming full circle to the first episode which was about the importance of placing more focus on why a behavior happens over what the behavior is.

*Note regarding language - The actually autistic community prefer to be called autistic rather than a person with autism*

About the Guest

Tiffany Joseph is diagnosed is diagnosed with autism, ADHD, and epilepsy. She is mom to three children, the two oldest are diagnosed with autism and ADHD while the youngest has sensory processing disorder and ADHD. She started the Instagram account nigh.functioning.autism because, as a parent to Disabled kids, she felt like there wasn't enough understanding and empathy for parents' fear of being overwhelmed and systematically disempowered by the system. On the other hand, she clearly sees that Autistic individuals are consistently talked over and rarely listened to even though they know what help they need and what changes the system needs to make. Tiffany observed that she and her autistic community are often the last to get a say in matters of autism. Tiffany is eager to help parents and providers as she has inside knowledge and experience with being Autistic, Disabled, a parent, and working and being educated in the medical field. She wants parents to be empowered to make the right choices for their kids and loved ones without the guilt and overwhelm that's the norm.

Find Tiffany in Instagram as nigh.functioning.autism

#124 - Medication as a Treatment Tool for Emotional and Behavioral Challenges Sep 29, 2020

Show notes

Medicine can be effective in the treatment of emotional and behavioral challenges but finding the right agent and especially the right dose can be tricky and time consuming. This episode covers:

Determining factors indicating it's time to consider medication as a treatment tool
How to tell the medicine working
Why it takes so long to find the right fit
The need for markers, tests, or predictors to help choose a pharmaceutical route
What to expect when starting a medicine
Comparison of drug classes and options within those classes
Dosing and the importance of finding the right provider and what to do if the wait list is long

About the Guest

Dr. Craig A. Erickson has worked to obtain continuous federal, foundation, internal, and industry funding supporting his and his collaborators' research over the last 10 ten years of his career. He is the inventor or co-inventor on many patents focused on translational treatment development in neurodevelopmental disorders that are held at Cincinnati Children's Hospital Medical Center and at his previous employer the Indiana University School of Medicine. He is considered an international expert in the clinical treatment of fragile X syndrome and has similar expertise in fragile X-specific clinical trial development. Dr. Erickson is additionally an avid teacher of future generations of child psychiatrists has received several teaching awards for his work in physician education. He also enjoys mentoring junior faculty in the behavioral and developmental neuropsychiatry sub-field of child psychiatry.

Specifically in research, he and his colleagues have moved forward several repurposed molecules for study in fragile X syndrome and autism spectrum disorder including work with acamprosate, riluzole, ketamine, D cycloserine, and N acetyl cysteine among other repurposed molecules. He also is working now to move several novel molecules into autism and fragile X-specific study using proprietary compounds abandoned from initially intended use that may hold promise in the disorders which he and his colleagues study.

Clinical Interests: Fragile X syndrome; inpatient neurodevelopmental disorders acute crisis stabilization

Research Interests: Fragile X syndrome; autism spectrum disorders; neurodevelopmental disorders; molecular blood markers; quantitative measurement of pathophysiology in developmental disabilities; translational treatment development; psychiatric services for those with developmental disabilities and severe behavior

Links to Mentioned Content:

Spark Study
Parent's Medication Guide
This show is part of 12 episodes making up the Complicated Behaviors Series in Season 4.

#123 - Co-Occurring Conditions & Crisis Intervention Sep 22, 2020

Show notes

Recognizing that a new diagnosis or co occurring condition exists in addition to an already existing autism diagnosis can be tricky. Our guest is one of few doctors in the country specializing in identifying and treating cooccurring conditions in autistic patients. She shares insight on identifying and treating cooccruing conditions as well as advice for parents should things escalate to a crisis situation.

About the Guest:

Dr. Robin Gabriels, Psy.D. is a licensed clinical psychologist and Professor of Psychiatry at the University of Colorado School of Medicine. Dr. Gabriels has over 30 years' experience developing intervention programs along with assessing and treating a variety of pediatric and adult populations. Dr. Gabriels established the Neuropsychiatric Special Care program at Children's Hospital Colorado, one of the few nationally-recognized specialized psychiatric inpatient and day treatment units for children with autism spectrum disorder (ASD) and/or intellectual disabilities. Dr. Gabriels' research efforts have focused on the ASD population for the past 22 years and for the past 12 years, her research has focused on evaluating the effects of human-animal interactions (HAI) on youth with ASD. Dr. Gabriels conducted the first large-scale NIH-funded randomized controlled trial of Therapeutic Horseback Riding on Children and Adolescents with Autism. In Jan 2020, Dr. Gabriels received a follow-up grant from the Eunice Kennedy Schriver National Institute of Child Health & Human Development of the NIH to evaluate the physiological mechanisms of action relating to the immediate and long-term effects of therapeutic riding in children with ASD and co-existing psychiatric diagnoses.

Dr. Gabriels is a certified trainer for the "gold standard" ASD diagnostic tool, the ADOS (Autism Diagnostic Observation Schedule). She has written articles and book chapters in the fields of autism, asthma, and art therapy, and has lectured and conducted workshops on ASD, both nationally and internationally. She has published two edited books, Autism: From Research to Individualized Practice, (2002) Jessica Kingsley Publishers and Growing Up with Autism:Working with School-Age Children and Adolescents(2007) Guilford Press.

Links to Mentioned Content:

Chapter written by Dr. Gabriels, A Model for Addressing Crisis Behavior in Youth With Autism Spectrum Disorder Within a Functional and Contextual Framework, in The Oxford Handbook of Autism and Co-Occurring Psychiatric Conditions
Assessment considerations upon hospitalization written by Dr. Gabriels and Dr. Siegel, Psychiatric Hospital Treatment of Children with Autism and Serious Behavioral Disturbance
The Autism & Developmental Disorders Inpatient Research Collaborative (ADDIRC), a research platform of specialized child psychiatry hospital units that serve children and adolescents with autism and developmental disorders.
Iceberg Assessment

This show is part of 12 episodes making up the Complicated Behaviors Series in Season 4

#122 - Complicated Behaviors: Fecal Smearing and Ingesting Sep 15, 2020

Show notes

Scatolia and coprophagia, also known as fecal smearing and fecal ingesting are among the least researched areas within the circle of complicated behaviors. Our expert guest shares reasons and solutions for this often unspoken and isolating behavior.

About the Guest:

Kate Reynolds worked for the UK's NHS for 18 years, seven of which were in HIV/AIDS during the 1990s in and around London. She worked as a senior nurse, trained counsellor and trainer. Both of Kate's children were on the autism spectrum, one with Asperger syndrome and epilepsy; the other having intellectual disabilities. She has written eleven published books, nine for Jessica Kingsley Publishers including What to Do about Smearing. She is working on a new series of books about sexual health for adults with autism and learning disabilities for Hachette publishers. Kate runs workshops for professionals and parent carers, speaks at national and international conferences, has written numerous articles and is a consultant for schools, other professionals and families. Currently she is engaged in doctoral studies based on her Masters degree.

Link to Mentioned Content: The poo recipe can be found on page 127 of Kate's book.

Related Episodes:

Episode 116: Touching of Self and Others
Episode 115: Moving from What to Why
Episode 77: Your Body Your Boundaries
Episode 66: Advocating Against the Sexual Assault Epidemic
Episode 44: Sexual Assault Risk Reduction
Episode 36: Trauma Indicators

This show is part of a 12 episode series in Season 4 focusing on challenging behaviors.

#121 - Addressing the Disability Advocacy Divide Sep 08, 2020

Show notes

Disability advocates have made great strides in recent years with headway in inclusion efforts and employment equality. While one segment of the disability community continues the hard work of bringing about needed change and celebrate victories along the way, there is another segment with more significant and debilitating disabilities being agressively silenced. Because policy and research are driven by awarenesses, the silencing of this segment of the disability community has come at the great cost of diminishing programs and supports for those who need them most. Can we come together and honor everyone's reality?

About the Guest:

Jill Escher is an autism research philanthropist, president of the National Council on Severe Autism, immediate past president of Autism Society San Francisco Bay Area, a housing provider to adults with developmental disabilities

Related Episodes:

Episode 120: Families in Crisis - Lack of Supports and Nowhere to Go w guest Vance Goforth
Episode 94: Disability Employment - Is It Really Possible for All? with guest Sean Roy of TransCen
Episode 73: Advocacy Series Recap
Episode 72: Finding Your Advocacy Style w guest Michelle Sullivan of Advocate Like a Mother
Episode 71: Political Advocacy - Yes You Can! w guest Laura Hatcher of The Little Lobbyist
Episode 67: HCBS Waiver, Fair Labor Laws & Advocating for Choice w guest Ashley Kim of Together for Choice
Episode 63 & 64: Inclusive Education - Overcoming the Resistance w guest Julie Causton of Inclusive Schooling
Episode 61 & 62: Inclusive Housing & Social Change w guest Micaela Connery of The Kelsey

This episode is one of twelve making up the Complicated Behaviors Series in Season 4.

120 - Families in Crisis Sep 01, 2020

Show notes

A family was in crisis. Windows were getting kicked out of moving vehicles. Injuries were mounting on both parent and child. There were dislocated shoulders, eye damage from head butts, and teeth being knocked out from head banging. All experts said treatment was needed ASAP. The problem? There was no where to go.

About the Guest

Vance & Kristy Goforth live in East Tennessee with their five children Joshua, Reagan, Emma, Camden and Anna Claire. A graduate of the University of Tennessee at Chattanooga, Vance is employed at a local power utility in the substation and metering department. Vance & Kristy started a advocacy page and support group in 2018 on Facebook; A Voice for Joshua, after facing years of challenges trying to get treatment for their son Joshua's behavioral disorder. Vance is also a volunteer advocacy ambassador through Autism Speaks for the 3rd congressional district in Tennessee. He also serves on the leadership council for the National Council for Severe Autism.

Links to Mentioned Content

This show is part of 12 episodes making up the Complicated Behaviors Series in Season 4.

Tribute Episode to Camp Krem Aug 25, 2020

Show notes

It is with sadness we learned Camp Krem fell victim to the California wildfires this week. For over 60 years Camp Krem celebrated the disability community and it was atop the mountainside camp many came to discover who they were and what they could become.

Today we pause our current series to share and remember what Camp Krem has meant to our family and republish episode 05 where Alex Krem Jr. expresses the ways he has seen campers change and grow. We also learn the legacy behind the 60 plus years of operation now in its third generation.

Bonus: An appearance by Piggie Smalls

We love you Camp Krem!

#119 - Complicated Behaviors: Hyperphagia ( food obsessions) Aug 18, 2020

Show notes

Hyperphagia is a common characteristic of Prader-Willi Syndrome and is an extreme, unsatisfied, drive to consume food to the point of being life threatening. This episode discusses the best ways to provide food security for those with hyperphagia such as what to put in the IEP, navigating social gatherings, food schedules, and tips for storing food.

About the Guest

Jessica Patay is a mother, wife, and advocate/cheerleader for Special Needs Mothers. She has been married to her husband, Chris, for 23 years and they reside in the Palos Verdes area in Southern California. They have two sons and a daughter, all teenagers. Their second son, almost age 17, was born with a rare, medically complex genetic disorder, called Prader-Willi syndrome.

Because Jessica is passionate about serving, mentoring, and inspiring other Special Needs Moms, she launched and leads a non-profit organization called We Are Brave Together. WABT provides resources, respite, support groups, mentoring and inspiration for moms caring for children or adult children, any age, with any diagnosis, disability or challenge. She believes in the power of gathering to empower, strengthen and uplift moms in their unique, diverse and difficult journeys. WABT offers support groups, workshops, retreats and inspirational events. (During this quarantine, WABT is offering weekly Zoom Support Group meetings On Monday nights at 8 pm.) You can find out more at wearebravetogether.com and see their resourceful and inspirational posts on Instagram @wearebravetogether

Jessica Patay has always been a lover of words, ever since 2ndgrade when she declared she wanted to be a famous "arthur." She has been blogging (infrequently) since 2012 for moms and Special Needs Moms. Her superpower is her honesty in truth-telling from the trenches of Motherhood. She is a three-time alumnus with Expressing Motherhood, a stage show of storytellers and performers all sharing about motherhood.

Mentioned in this Episode

Prader-Willi Foundation California
Prader-Willi Syndrome Association USA
Foundation for Prader-Will Research
We Are Brave Together website, zoom calls/retreats/gatherings, podcast, Facebook Page, Instagram Page

#118 - Motivation & Masking on the Spectrum Aug 11, 2020

Show notes

Being autistic can be really hard. Especially when societal norms are working against nuerodiverse acceptance and the common traits associated with autism. This episode looks at how to move beyond the stigma of masking, negativity, obsessions and motivation to use them as advocacy tools for a more neurodiverse culture.

For this episode Kim collected questions from the @journey2lomah instagram community and presented them to Rose Reif, LCMHC, CRC, BC-TMH.

Rose Reif is a Licensed Clinical Mental Health Counselor, a Certified Rehabilitation Counselor, and a Qualified Developmental Disability and Mental Health Professional. She's also Board Certified in providing Telemental Health. Rose supports people with disabilities and the people who love them in her counseling practice in Cary, North Carolina. You can learn more by visiting RoseReif.com

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