The Oxygen Mask Podcast

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.

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

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. [email protected]

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 >>

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!

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!

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.

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).

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?”

In our second Oxygen Mask episode, “They’re Listening,” we have an honest conversation about the power of words in shaping how our children see themselves. Setting aside guilt, we step into the power we hold as parents to make a difference in small, consistent ways. We can be thoughtful and intentional about what we share and where. We can find outlets to process the hard stuff. We can practice “pivoting” from energy-sapping conversations about deficits, causes, cures, and strategies to emphasize gratitude, growth, and strengths. Listen and comment: What are some “pivot phrases” you can use to shift from fear or deficits to strengths? Have you ever had an aha moment where you realized your child is listening?

Show Notes:

Check out this kiddo snapshot that describes a child in positive, concrete ways and offers suggestions for successful engagement. Make one with or for your child and use it as a introduction with teachers, camp leaders, caregivers, and others. The snapshot is part of a CEA blog post about summer planning and we’ve since learned that a similar snapshot/picture is used in Person-Centered Planning.

Carly’s Voice, a powerful book by a father-daughter duo in which, among lots of other topics, they discuss what it was like for Carly, who is autistic, to understand and take in the world around her but be unable to communicate verbally for much of her childhood.

Nick Walker’s “What is Autism” offers a neutral definition of autism and a starting point for “pivoting” our own ideas about autism away from deficits and toward differences.

As you try on a strengths-based lens, it may help to understand the “Kingdoms of Autism”. We offer this article to help you better see the “lay of the land” around you. Recognizing the lens that friends, family members, strangers, teachers, and clinicians bring to the conversation can help you orient yourself and “pivot” or translate more readily toward the lens that feels healthy for you, your child, and your family.

Important Content Ahead! While we briefly touched on it here, we will dedicate a future episode to the very important topic of parents having a safe, healthy outlet to process the challenging realities that come with raising a child on the autism spectrum. If your emotional needs aren’t being met, reaching for strengths can feel artificial and stifling. That’s no place to be.

Below, we’ll share a synopsis of “pivot phrases” from listeners this week. Grab ‘em and use ‘em on the playground, in the hallways, and in your neighborhood!

“There’s no need to be [sorry], he’s [positive descriptions of child].”

“We don’t spend a lot of time thinking about that (i.e. causes), but....[name interests].”

“We haven’t looked into that [i.e. strategy/“cure”]. We have what we need right now/are doing what we need to do right now.”

”It sure can be hard, but we are OK/have a lot of great people in our lives/have some great things going for us.”

The inaugural episode of The Oxygen Mask podcast is now available!! We are so excited to be sharing our knowledge this way. We know parents, especially special needs parents, are busy and our hope is to give you a short break in your day to become very intentional with your wellbeing and your parent role. Take a pause and a breath so you can best help your child. We will not overwhelm you with lots of shoulds and to dos. We want to empower you to navigate the autism path in your own way. We feel a podcast format is wonderful because it builds a sense of community and allows you to digest information in small doses while giving you the power to investigate ideas further on your own.

Show Notes:

Interested in trying out breathing/mindfulness practices? https://www.tarabrach.com/guided-meditations/

What’s with the hands on hips in the breathing exercise?  https://www.ted.com/talks/amy_cuddy_your_body_language_shapes_who_you_are?language=en

What’s this LEND thing you speak of? https://lend.umn.edu/

“Your child’s best advocate,” a heartfelt blog post from Beth on her experience with burnout/overwhelm: https://cea4autism.org/childs-best-advocate/

Tera’s book, "Faces of Autism" can be found here: www.teragirardin.com or on Amazon.com

Neurodiversity? What is that? Ask and Autistic # 19: What is Neurodiversity? https://youtu.be/H6xl_yJKWVU