The Oxygen Mask Podcast

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.

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. Steven later summarized their approach as follows: validate [what men share], normalize [men's experience/"you're not alone"], empower [men to engage and grow]. 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/

Note: Don and Steve expressed appreciation for Arc Minnesota's past sponsorship of their group.

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.

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

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.

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

Article about Dr. Samuel's work in St. Lucia

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.

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.

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/

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

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

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

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.