The Oxygen Mask Podcast

Beth is joined by co-host, Jen Reiter, a parent of a young woman with ASD and an advocate for neurodiversity, mindfulness, and all things creative. Beth and Jen chat with Robin Rumsey, a Pediatric Neuropsychologist at the Masonic Institute for the Developing Brain in Minneapolis, MN. We explore Robin's approach to working with families early in their autism journeys. Robin discusses her own learning over the years, and how she helps parents prioritize the family's well-being and the needs of their child with autism. We hope you'll find encouragement, perspective, and reassurance here.

Show Notes

Announcement of Communities Engaging Autism's closure

Masonic Institute for the Developing Brain in Minneapolis

LEND - Leadership Education in Neurodevelopmental and Related Disabilities: This is the fellowship program Jen references in which she met Robin and observed her in clinic.

Robin mentioned care coordination as a way to help families navigate. More info on care coordination in this Oxygen Mask Podcast episode.

Robin mentioned several family and parent connection opportunities, including the Autism Society of MN, school district groups (this could include Special Education Advisory Councils), and an Explore MN article on attractions that cater to kids with autism (part of a broader Accessible Travel feature)

This conversation explores the dual diagnosis of autism and Down Syndrome with guests Ashley Olthoff of the Down Syndrome Association of Minnesota and Marcy Rede, a parent of a young adult with the dual diagnosis. Ashley helps us understand how traits of individuals with Down Syndrome can overlap with autistic traits. Marcy describes how the parenting path she thought she was on with her daughter diverged and led to her daughter's autism diagnosis. Marcy thoughtfully describes her daughter's "in-between place" in the disability community.

Show Notes

National Down Syndrome Society page on dual diagnosis and related resources

When Down Syndrome and Autism Intersect. Froehike, R.N., Zaborek, Robin. Bethesda, MD: Woodbine House. (2013)

Down Syndrome - Autism Connection

Down Syndrome Association of Minnesota (DSAMN) where you can find Ashley Olthoff.

DSAMN's Autism and Down Syndrome - Minnesota Facebook Group where you can find Marcy Rede

Acknowledgements

This podcast episode was made possible thanks to a grant from the Minnesota Department of Human Services.

In this second episode with Shannon Andreson, we go deeper into reframing summer in terms of resources. We discuss two more LifeCourse tools that help visualize and communicate our own or our kids’ supports, connections, and strengths. Don’t miss the links and examples in the show notes!

Show Notes

Beth's YouTube video on the support star and schedule.

Example: Beth’s Integrated Supports Star. Note: The underlined items are those that "fell off" during the pandemic and could be resumed if doing so would be supportive.

Wait a minute, what is LifeCourse? We've talked about it on the podcast before, but it's been awhile. Check out Oxygen Mask Podcast Episode 20: LifeCourse Tools for Planning and Advocacy to learn more.

Disability Hub MN links to LifeCourse

Acknowledgements

This podcast episode was made possible thanks to a grant from the Minnesota Department of Human Services.

Our guest, Shannon Andreson, is a parent of a young adult on the autism spectrum and leader in education and autism advocacy. She helps us shift our thinking about summer. For many special needs families, irregular schedules and long summer days can be daunting. But Shannon’s reframing helps us see summer's flexibility as an invitation to build support and independence and to recognize resources close at hand. In this conversation, we highlight a visual tool that may help you reframe to see structure and abundance in your day-to-day. Don't miss Episode 26 for the second part of this conversation with Shannon.

Show Notes

Charting the LifeCourse schedule tool (bottom of page). Note: The schedule is nestled into a group of tools related to respite, or small breaks for caregivers throughout the day. You can use the schedule to illustrate your own day (and small chances to rest) or the way your child spends his or her time. Caregiver respite is a huge area of need and a rich area to explore with LifeCourse tools. Communities Engaging Autism hosted two events in Spring of 2022 on this topic. We’d love to connect with you to walk through possibilities and resources for finding small moments to put on your own oxygen mask on. for your family. Connect with us at [email protected]

Wait a minute, what is LifeCourse? We've talked about it on the podcast before, but it's been awhile. Check out Oxygen Mask Podcast Episode 20: LifeCourse Tools for Planning and Advocacy to learn more.

Disability Hub MN links to LifeCourse

Acknowledgements

This podcast episode was made possible thanks to a grant from the Minnesota Department of Human Services.

In Episode 24, Beth interviews Tara Mahin, a Care Coordinator in the pediatric practice that cares for both of Beth's kids. The two discuss ways care coordinators can help parents of medically complex kids, including parents raising kids with autism. The conversation illustrates how a little help goes a long way in helping families navigate systems more efficiently, lending continuity to care, and providing and a "warm handoff" among providers. Listen in and check out the show notes to learn more about accessing care coordination.

Show notes:

Find Health Care Homes at the Minnesota Department of Health's website. Health Care Homes include care coordination as part of their services.

Tara Mahin is a Care Coordinator at South Lake Pediatrics in the Twin Cities metro area in Minnesota.

Beth and Tera talk about being intentional about our commitments. They share the process of Tera's decision to step away from co-hosting the Oxygen Mask Podcast. Making connections to raising children on the autism spectrum, they surface opportunities that have come from doing less. Listen in and be part of this warmhearted "goodbye and thank you" to Tera.

Show Notes:

Consider joining Communities Engaging Autism's monthly Parent Growth Circles where we support one another in putting our oxygen masks on first (and not swatting them away).

Listen to part two of the conversation with Sy and Maychee. Drawing from experiences and challenges they shared in Episode 21, Sy and Maychee describe their hopes, celebrations, and perspectives as members of Minnesota's Hmong-American community and the autism community.

Sy mentioned his involvement with the Multicultural Autism Action Network (MAAN) as well as the Supporting all Abilities Welcoming All Voices (SAWV) Facebook group. Part of his work with MAAN included a rich, personal conversation he had with Maychee and shared on YouTube. Check it out here.

Hear's a brief feature on Maychee from Hmong American Experience.

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.

Beth is joined by two guests from the local Hmong-American community. Sy, reflects on his educational path and the supports he has or would like to have in order to live well as an adult with autism. Maychee, a mother of a young child with autism, describes pursuing supports for her son. She navigated her family's reservations that were rooted in stigma and lack of understanding.

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.

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.

New Date June 22, 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?"

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.