Created with Sketch.
The Oxygen Mask Podcast
35 minutes | May 19, 2021
Oxygen Mask Episode 20: LifeCourse Tools for Planning & Advocacy
Jamie O'Connor of Family Voices of Minnesota shares how envisioning a good life for her daughter helped Jamie move from overwhelm and "overtherapy-ing" to advocacy informed by her daughter's interests and strengths. In our podcast conversation, we discuss two favorite LifeCourse tools (links below). Jamie's stories and our reflections illustrate how simple tools and visuals can spur conversation and inspire courage and clarity. Show Notes: LifeCourse Tools from the University of Missouri Fillable PDFs of the tools discussed: Integrated Support Star; Life Trajectory Disability Hub MN has accessible information and links on Charting the LifeCourse. May 25, 2021 Family Voices of Minnesota webinar: Using the Trajectory Tool: Charting the LifeCourse Favorite quote from Jamie on benefits of using planning tools centered on the disabled person: "It's the difference between showing up and asking what’s available and showing up and saying these are my wants and needs. How can we work together to meet them?"
35 minutes | May 10, 2021
Oxygen Mask Episode 19: Neurodiversity with Milena and Jules, Part 2
We entered April, autism acceptance month, with Milena and Jules. As these two neurodiverse mothers raise autistic children, they are living out and advocating for autism acceptance in their families and communities. Our conversation began with the founding and growth of MN Autistics and Allies and meandered through autistic community, masking, splinter skills, language, and how talking about autism with kids can help them advocate for themselves. This conversation shifted our thinking and we hope it does the same for you! Show Notes: - A recent article on the shift in language from autism awareness month to autism acceptance month - MN Autistics and Allies is the Facebook group that Milena and Jules co-administer. - Writing from Jules (@AutisticTyping): "Today, your child was diagnosed with autism" #AutismMoon in-progress series (images with bite-sized information) - Milena is a Pacer Parent Advocate and member of the MN Department of Education's Special Education Advisory Panel. - Jules is a Parent Advocate with the Multicultural Autism Action Network and current University of Minnesota LEND fellow. Acknowledgements: This Oxygen Mask Episode was made possible by an Family Connections Innovation Grant from the MN Department of Human Services. Communities Engaging Autism is grateful for this financial support.
26 minutes | Apr 19, 2021
Oxygen Mask Episode 19: Neurodiversity with Milena and Jules, Part 1
This April, autism acceptance month, we have insightful conversations with Milena Bates and Jules Edwards about neurodiversity. These two mothers recognized that they themselves are neurodiverse as they sought diagnoses and services for their autistic children. This episode will bring you joy, make you think, and provide a new lens on autism. Milena and Jules share their personal and parenting journeys and shift the autism narrative toward acceptance. Show Notes: - MN Autistics and Allies is the Facebook group that Milena and Jules co-administer. - Writing from Jules (@AutisticTyping): "Today, your child was diagnosed with autism" #AutismMoon in-progress series (images with bite-sized information) - Milena is a Pacer Parent Advocate and member of the MN Department of Education's Special Education Advisory Panel. - Jules is a Parent Advocate with the Multicultural Autism Action Network and current University of Minnesota LEND fellow. Acknowledgements: This Oxygen Mask Episode was made possible by an Family Connections Innovation Grant from the MN Department of Human Services. Communities Engaging Autism is grateful for this financial support.
24 minutes | Mar 22, 2021
Oxygen Mask Episode 17: Dads of Kids with Special Needs
In this episode, we hear from two men who've lead a support group for dads of kids with special needs for over 15 years. Impacted by one father's isolation and struggle as he processed his child's diagnosis, Don Nikkola, MSW, knew this father was not alone. He partnered with Steve Roeklein, LCSW, to address a big gap in peer support for men. Hear how this group of fathers helps each other navigate their unique fatherhood journeys. Show Notes: Learn more about Twin Cities Dads (Helping fathers help their special kids) at https://tcdads.org/
27 minutes | Jan 4, 2021
Oxygen Mask Episode 16: Guest Delia Samuel, Part 2
We dive deep with Delia Samuel in this second part of our conversation. She reflects on discrimination, isolation and her commitment to build understanding of autism. Delia shares more about what has sustained her in extraordinarily difficult times. Beth, Tera, and Delia recognize how we parents grow to become the best-suited people to parent our autistic children. Show Notes: "The But God Project" features Delia's faith story. Delia is a co-founder and board member with the Multicultural Autism Action Network (MAAN). On Facebook: https://www.facebook.com/groups/MAANMN Against the Odds: Inspiration for Parenting Children with Special Needs by Delia Samuel Article about Dr. Samuel's work in St. Lucia
20 minutes | Dec 31, 2020
Oxygen Mask Episode 15: Guest Delia Samuel, Part 1
Listen in to our conversation with Dr. Delia Samuel for encouragement and rich perspective. By openly sharing about her own experience parenting two autistic boys, Delia's found that she can help parents face stigma and feel seen and supported. Show Notes: Delia is a co-founder and board member with the Multicultural Autism Action Network (MAAN). On Facebook: https://www.facebook.com/groups/MAANMN Against the Odds: Inspiration for Parenting Children with Special Needs by Delia Samuel
22 minutes | Oct 1, 2020
Oxygen Mask Episode 14: A Parent Coach’s Insights for Families
We're so glad to welcome Bonnie Bogen, Parent Coach and retired Autism Specialist, to the Oxygen Mask. Many families are all too familiar with the stresses weighing on and pulling us in many directions. Here, Bonnie suggests some concrete strategies. Perhaps most reassuring, however, is her wise guidance about expectations we set for ourselves and for our children. Thanks for listening! Show Notes: Check out a visual we made based on Bonnie's ideas for helping parents and families focus their priorities.
25 minutes | Aug 30, 2020
Oxygen Mask Episode 013: We’re in the same storm: A COVID chat
Welcome to back-to-school: Pandemic edition, featuring parents jostled and swirling in a sea of uncertainty! In this episode, Beth and Tera check in on stress symptoms and coping strategies. What helps you feel safe and tethered down in these stormy times? Hear the hosts' thoughts on what's been harder and what's been easier about a socially distant summer. Tera and Beth remind themselves and their listeners to go back to the basics of supporting ourselves and our family members, especially those on the spectrum. Friends, it bears repeating: Please secure your own oxygen mask before helping others. Show Notes: Yoga with Adriene: https://www.youtube.com/user/yogawithadriene Favorite timer (similar to those often used at school): Time Timer Article from disability scoop identifying pandemic complications and stressors for those parenting kids with special needs: https://www.disabilityscoop.com/2020/08/19/pandemic-pushes-parents-of-kids-with-special-needs-to-breaking-point/28760/
2 minutes | Jun 18, 2020
Podcast Summer Pause & Fall Invitation
Take a quick listen to our thoughts heading into our summer pause. We would love to bring more voices into the mix on the Oxygen Podcast when we reboot in the fall. Let us know if you or someone you know would like bring a new lens or important information to the conversation! Be well. And breathe. With gratitude, Tera & Beth
26 minutes | May 1, 2020
Oxygen Mask Episode 12: Noticing, nurturing strengths
Episode 12 comes to you during a challenging time for all of us in this COVID-19 pandemic. Tera and Beth acknowledge the brain fog, fatigue, intensity, and interruptions that are weighing on us all. We have slowed down and are trying, daily, to be more flexible and gentle with ourselves and our families. That’s why our April podcast is finally showing up in May! Please extend these friendly attitudes to yourself as well. When you have found some rest and space, we hope that Episode 12 plants a seed of gratitude and appreciation as we talk about nurturing a strengths-based lens with our kids and our whole families. Show Notes: Book: Just Give Him the Whale! by Paula Kluth and Patrick Schwarz
28 minutes | Mar 28, 2020
Oxygen Mask Episode 011: Welcoming guests, unpacking mindfulness
In Episode 11, we warmly welcome our first guests, Kate Biederman and Jen Reiter, who have deeply shaped Communities Engaging Autism's mindfulness course*. In this rich conversation, Beth, Jen, Kate and Tera unpack what mindfulness really is and the growth they've seen in themselves and others through practice. *Our Spring 2020 course has been cancelled due to the COVID-19 pandemic. To stay informed of future offerings, subscribe to the podcast or visit our website to subscribe to CEA's newsletter. Key quote: "People don't have less stress in their life...they're just more equipped and resourced to handle what comes." - Kate Biederman Key points: Defining mindfulness; noticing is powerful Anchoring your attention in your body; being present in the moment Consistency is key in growing self-awareness; do simple things, daily Practicing in community with other parents is powerful Show notes: LEND Fellowship Communities Engaging Autism's Mindfulness-Based Stress Reduction Course for Parents of Kids with Special Needs Jon Kabat-Zinn Sebastian Gendry Book: How to Relax by Thich Nhat Hanh
25 minutes | Feb 3, 2020
Oxygen Mask Episode 010: Appreciate the good
Join us in offering yourself a little love this February! In Episode 10, Tera and Beth recall positive, encouraging words and actions from people who have come alongside us and our families. These are beautiful moments that let us know we are seen and that our children are known and valued. Draw from our stories to recognize your own. Hold them up, have a good look at them, and thread them into a story of hope and encouragement. Take a listen and let this episode awaken or enliven your own gratitude. Take-aways from this episode are really interwoven with Communities Engaging Autism's 7-week course, Mindfulness-Based Stress Reduction for Parents of Kids with Special Needs. There, we talk about the brain's negativity bias (as Rick Hanson puts it, the good slips off as if on Teflon and the bad sticks like Velcro). It takes intention to balance out our brain's defaults. The seeds that you water are the ones that grow; the muscles that you work are the ones that get stronger. Another offering begins April 7, 2020. Click here for details. Each day this month, jot down a few specific, positive things people have said to you, ways others' actions have encouraged you, or just positive, peaceful, or joyful moments in your day. Oh, and there's an app for that. Three Good Things is a gratitude practice builder that's gentle and simple.
31 minutes | Dec 23, 2019
Oxygen Mask Episode 009: Holiday Strategies & Solidarity
We hope you’ll take a moment amidst the holiday flurry to breathe, listen, and be encouraged. In Episode 9, we acknowledge the many ways that family gatherings are a lot for us and our kids and we talk through ways we can navigate: Expectations! Ours own, those of others, those spoken, those unspoken, and those we imagine Boundaries that are healthy for us and our children; respecting how your child copes Identifying the most challenging activities and/or those with the most set expectations (i.e. large sit down dinners) and “bookending” that event with activities that are restorative for your child and meet his/her needs for down time or sensory input Drawing from mindfulness principles, we challenge you to notice the stories you tell yourself as you engage with your larger family and friend circles. If a story of “not enough” with a side of shame or guilt is present, we encourage you to nudge your story toward self-acceptance and acceptance and celebration of the family you have formed. Remember, you’re not doing this alone—Tera, Beth, and many other special needs parents are right there with you. Best wishes for a peaceful time of togetherness and much rest afterwards! Show Notes: Beth mentioned Communities Engaging Autism’s course: Mindfulness-Based Stress Reduction for Parents of Kids with Special Needs. Here’s information about our fall 2019 session. A late spring offering of the course will be announced soon. Scholarships available.
35 minutes | Dec 20, 2019
Oxygen Mask Episode 008: Curveballs
The Oxygen Mask is back! Have you experienced a few curveballs in life when unexpected circumstances challenge you, forcing you to focus on one step at a time? This is often the time when routines or expectations that ground us slip away and we find ourselves more than maxed out. In Episode 8, which was recorded last fall, we reflect on curveballs that life has thrown our way and how we, fumblingly, do the best we can to respond and find our way through. Discussion points include: How have you helped your child make sense of situations like the death of a loved one or a big life change when you are struggling yourself? What are some of your signs that you’re at your maximum capacity (or beyond)? How can we respond when we react in ways we regret? What are our kids’ cues that they’re near or beyond capacity to manage uncertainty and stress too? Show Notes: 1) “Size of the problem” resource and guidance 2) “Expected and unexpected”: Why do we Use the Expected-Unexpected Social Thinking Vocabulary?; Youtube Video on Activity for Expected vs Unexpected
30 minutes | Sep 27, 2019
Oxygen Mask Episode 007: Your Relationships Matter!
Oxygen Mask is back after a summer breather!! In this episode, we talk about the importance of relationships to sustain and grow us as individuals. We reflect on friendships that have become anchors through tumultuous years. We discuss questions like: What have supportive, essential friendships looked like over the years? What relationship dynamics should we watch out for as special needs parents? As always, we encourage you to trust the process when it comes to friendship. Reach out and let us know what makes a great, growing friendship for you and, very importantly, let us know if you’re feeling disconnected. Info@cea4autism.org Show Notes: 1. We mentioned some support group resources, emphasizing that the way groups are run is really important for a healthy dynamic. Here is a Resource Sheet on Minneapolis/St. Paul support group opportunities from Communities Engaging Autism’s website. There is so much more than what’s here, but this is a start! 2. Shared interests and pursuits are a great way to begin a friendship. This fall, Communities Engaging Autism is offering a Mindfulness-Based Stress Reduction course specifically created for parents of kids with special needs. In the past, our participants have enjoyed a sense of solidarity and mutual support as they seek to improve their overall wellbeing through mindfulness practice. Learn more >>
2 minutes | Jul 30, 2019
Oxygen Mask: A Pause
Where’s the play button? Well, we’re following our own advice and taking a short pause to rest and enjoy this busy, beautiful summer. Listeners are telling us the Oxygen Mask Podcast has been an encouraging, powerful place. Will you grow this good thing with us? Please take two minutes to share your two cents via our survey at https://www.surveymonkey.com/r/BH9VL7Z. Thank you!! Looking Back, Moving Forward This pause is an opportunity to reflect on the thrilling and fulfilling six-episode streak we’ve had this spring. Where have we been? What have we covered? Where are we headed? Remember, the Oxygen Mask began as a collaborative project between Communities Engaging Autism and Tera Girardin as part of her LEND fellowship. CEA is so grateful for Tera’s initiative and creativity. We plan to continue supporting this flexible, inviting format to connect and encourage parents of children with autism and other special needs as well as the professionals and community members who support them. You’ll hear from us again in September!
38 minutes | Jul 16, 2019
Oxygen Mask Episode 006: Information Overload
In Episode 6 of The Oxygen Mask we talk about wading through the mountain of information, options, advice, and opinions that come along with an autism diagnosis. Where do you begin?! Often we parents feel the need to jump in with both feet, read all the articles (hello, late night Google sessions), explore every therapy, make every appointment and do everything possible in the name of helping our child. But at what expense? Is it worth it? We'll talk about how to be discerning with information overload and employ Oxygen Mask techniques to make healthy choices. (Spoiler alert: Permission granted to not do all the things!) Show notes: Beth mentioned Temple Grandin’s Thinking in Pictures. Have You Filled a Bucket Today? by Carol McCloud Notice and then try to nudge your thoughts toward these mindfulness attitudes. The Oxygen Mask conversations are filled with gentle reminders and examples rooted in mindfulness. Communities Engaging Autism will be offering fall 2019 and spring 2020 Mindfulness-Based Stress Reduction for Special Needs Parents! This is a wonderful opportunity to practice breathing exercises, several types of meditation, yoga, Qigong, and more alongside supportive peers and facilitators. The goal is to see what works for you and to support you in carrying it through your day-to-day. The Velcro and teflon analogy comes from Rick Hanson. See details. Note: Dates/locations listed are for on our past offering. 2019-2020 dates/locations will be announced on Facebook or via our newsletter and blog. Reach out with questions!
36 minutes | Jun 25, 2019
Oxygen Mask Episode 005: Why Do We Need an Oxygen Mask?
Why do we need an oxygen mask? How you parent your child matters for life! But autism is intense and challenging for our children and that makes parenting a unique challenge too. In this episode we dive into how we respond to these challenges and how to use your oxygen mask to respond in a healthier way. Reset your expectations, avoid the busy badge, embrace JOMO (joy of missing out), reframe how you view autism, get comfortable with uncertainty, stay in the present, and stop asking why. Recognize that it’s a lifelong journey and a spiral staircase of learning and adapting. What techniques have you used to put on your oxygen mask? What moments of noticing or mindfulness have given you pause? Do you have any mantras that get you through? What resonated with you in today's episode? Show notes: 1) Research on parent stress: Hayes, S. A., & Watson, S. L. (2013). The Impact of Parenting Stress: A Meta-analysis of Studies Comparing the Experience of Parenting Stress in Parents of Children With and Without Autism Spectrum Disorder. J Autism Dev Disord, 43, 629-642. Link: http://cds.web.unc.edu/files/2015/09/parentingstressandASD.pdf In this article, the authors conduct secondary level research that’s one step away from the original research they’re reviewing. Their results and discussion are especially insightful. So are the background sections that discuss the specific questions and concerns that drive their inquiry on parental stress. Important Note: As you read, remember that the authors need to establish a problem to argue for the importance of their research and its contribution to a larger conversation. In this case, the problem is parental stress and that problem is linked here to autism. We can take these broad strokes to be true for us (i.e. parenting a child with autism is uniquely stressful), but let’s be careful not to get swept up and become overwhelmed, helpless, or discouraged. CEA’s passion and the Oxygen Mask’s goal is to help parents find supportive ideas, relationships, and practices that build resilience. There’s also research on resilience that we’ll be sharing to better understand and celebrate the remarkable levels of resilience in families of children with ASD. 2) A follow-up point on our conversation: Beth wanted to add something to Tera’s idea about not taking her son’s difficult words or actions personally and saying “oh, that’s autism.” Beth says, “To find empathy even when I’m hurting or upset, I remind myself, ‘He’s having a hard time,’ and ‘He’s showing me he’s struggling.’” Use whatever oxygen mask technique works best for you! 3) This interview with authors of “Burnout: The Secret to Unlocking the Stress Cycle” is powerful and worth a listen. In particular, the idea of “completing the stress cycle” through physical activity, connection, and creative expression (among others), add a helpful layer to some of the Oxygen Mask strategies we talk about here.
38 minutes | Jun 11, 2019
Oxygen Mask Episode 004: What’s Going on Here?
In this episode, we talk about why autism can be so hard to recognize, to grasp, to identify, and to accept. We name “four S’s” to consider why it is so discombobulating: Spectrum, Systems, Stigma, and Self. We know each journey is complex and unique, but we you find some recognition or gain some insights as you listen. As always, let us know what’s missing! Show Notes: Book suggestion: Neurotribes by Steve Silberman. This is a thick and dense read and may be best as an audiobook. See Communities Engaging Autism’s book review here. Click for article: A synopsis of research that shaped understandings of autism in the US (Kanner) and Europe (Asperger and, later, Wing).
33 minutes | May 28, 2019
Oxygen Mask Episode 3: We’re Listening
We are listening. We heard a sense of hope but also overwhelm from some of our Episode 2 listeners. You took the conversation further, asking, “How do we hold up our children’s strengths when we are navigating systems that need to zoom in on deficits and struggles? How do we communiate so that we feel comfortable knowing our children are listening?” We don’t have all the answers, but we’re having a conversation about our experiences stretching between deficits and challenges and assets and strengths. In this episode, we offer a mix of strategy and encouragement to try, try again. Show Notes: We discussed communication aids for IEP meetings and appointments: 1) Jot down “what’s working/what’s not working” with your child as a check-in strategy. For more structure, print or copy your child’s schedule (use terms school uses for subjects, spaces, etc.) and have him mark what’s working/what’s working. It may require several small conversations over time. Also, remember that hallway transitions and other unstructured, in between moments may not be on the schedule, but often pose additional challenges for our kids. Ask about hallway and line-up time, etc. 2) Beth mentioned a brief “Celebrations and Challenges” sheet she creates for pediatrician well visits. Keep it brief and focused on your child. 3) We liked this Self-Awareness Worksheet from www.understood.org both as a self-advocacy builder and as a check-in and communication tool. Including your child in IEP meetings is a personal choice that may vary over time. Here are two resources that may help you weigh whether and how your child joins the conversation: From PACER: “How Can My Child Be Involved in the IEP Process?” By Scott Lutostanski: “Should Your Child Attend His IEP Meeting?”
Terms of Service
Do Not Sell My Personal Information
© Stitcher 2021