June 25, 2019
by Tera Girardin

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. 

June 11, 2019
by Beth

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).

May 28, 2019
by Editorial Team

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?”

May 14, 2019
by Beth
1 Comment

Oxygen Mask: They’re Listening. Episode 002.

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.”


May 6, 2019
by Beth

Entering In: The Magic of Play

In thinking ahead about this Thursday’s event: The Magic of Play, I’ve been reflecting on how play has shaped my relationship with my son on the spectrum. When he was a toddler, cause-and-effect toys were a delight—the delicious anticipation of the pinched balloon ready to writhe around the room, the toppling of toilet paper towers, and the spinning top that jolts and wobbles. I often took the lead in this kind of play, seeking after joint attention and loving every minute of it, though always worried that I wasn’t doing “enough.”

My son’s favorite toys were trains. I would build tracks and he would inspect them, rolling train cars across each junction and bridge, back and forth, pausing with his eyes close to the track to take in the motion. To this day, he loves watching the mechanics of motion, especially flow. He still gets this look of recognition, of deep interest in something he sees, and then his eyes get a far off look as his mind switches into high intensity mode.

It wasn’t always easy to enter in to play when he was in that mode. Nevertheless, I would sit beside him, narrating my play with words from Thomas the Train books. “Oh no, there’s a fault in the track!!” The familiar lines would draw his attention to my train’s dilemma for a rescue and then we’d haul freight together. I think, back then, I didn’t trust my child’s look of intense focus. I felt like it meant autism was pulling him away from me. I thought I had to “up my play game” to compete for his attention. Unconsciously, I think I didn’t trust my son and the way he is wired.

Over time, I kept observing, entering into, and growing in appreciation of his play. I recognized that high intensity mode in the look on his face in other situations. He saw flow as he washed ribs of celery in the sink. He saw it in the merging traffic lanes and spiraling parking ramps. “It’s like a current,” he observed, as he gazed from the balcony at the people filing out of church pews. His intense, captivated expression helped me recognize the way he saw the world. With that understanding, I gradually chose to trust him and follow his lead.

And what a leader he is! Now he leads the way on veering, twisting mountain bike trails with a focused, elated glint in his eyes. He shares he latest maze drawings, complete with color-coded portals adding a Chutes and Ladders-like element of complexity and color. He offers to be my “navigation system,” rivaling Siri in precision from the back seat of the car.

As I think about it, my son and the way he plays and engages with the world has been consistent through the years. It’s been me who’s changed by entering in, trusting myself and trusting my son of my son and his strengths.

I know that Katrina Kramlich’s talk will provide affirmation and encouragement for me. I also look forward to a boost of inspiration and maybe even some insights from this experienced educator on what new growth the coming years might hold.

April 30, 2019
by Tera Girardin

The Oxygen Mask Podcast: An Introduction. Episode 001

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

April 24, 2019
by Editorial Team

Oxygen Mask Podcast: Take a breath with us!

During this month of autism awareness and acceptance, we are excited to announce our freshest new endeavor: The Oxygen Mask Podcast. A collaboration between CEA’s Executive Director, Beth Dierker, and Tera Girardin, author & photographer of “Faces of Autism,” the podcast will launch on Tuesday, April 30th on CEA’s website.

The podcast shares the nuggets of insight that Tera and Beth, both autism parents themselves, have picked up along the way—nuggets that they wish they’d found and grabbed hold of sooner. With a strong emphasis on mindfulness and a strengths-based approach, the pair hope to offer a breath of fresh air for parents who are overwhelmed.

The Oxygen Mask and its Origins

The name of the podcast comes from the airline flight instructions which tell you to secure your own oxygen mask before assisting your child with theirs. Beth explains, “As parents, our default is to do everything possible to help our children. For me, that’s been a direct route to burnout. Sometimes the best thing we can do is take a breath and take a moment to ourselves so we can function, learn, and grow. Then we are in a better place to help others do the same.”

The Oxygen Mask podcast idea began when Beth and Tera—former and current (respectively) University of Minnesota LEND (Leadership Education in Neurodevelopmental Disabilities) fellows—met over lunch to discuss the program and their shared interests. Girardin recalls of their first meeting, “We couldn’t stop talking about our experiences and how passionate we both are about coming at autism from a place of strengths.” As the pair later video chatted about possible projects, Girardin declared, “I think people want to hear what we are talking about right now. I think this needs to be a podcast.” And the idea for The Oxygen Mask podcast was born! The podcast is a perfect collaboration as it carries out CEA’s mission and serves as Girardin’s capstone project for the fellowship.

What You’ll Hear

Podcast themes include self-care while caring for others, becoming an advocate for your child, relationship strains, avoiding burnout and information overload, and learning to trust your internal compass. Listeners will enjoy the conversational approach and connection to resources. The Oxygen Mask is ideal for the parent of a child with a recent diagnosis or evaluation who is wading through information and decisions that come with developmental differences. Beth and Tera hope the Oxygen Mask empowers parents to trust themselves, to connect with other parents, and to notice and build on their own and their children’s strengths. Look for opportunities to comment, critique, and contribute!

The Oxygen Mask can be found where podcasts are distributed and on CEA’s website. Take a breath with us!!

Footprint in slush

March 22, 2019
by Beth

Stress: The Slush Factor

In my last post, I shared research findings on two stress interventions for special needs parents that proved effective. One was a mindfulness program and the other a program based in positive psychology. I summarized the findings about the stress reduction strategies as follows:

1) How we understand our circumstances matters for our well-being.
2) Small, daily practices can make a big difference.

Those two statements could tie a metaphorical bow on the research, but I instead posed some questions that poked at the internal resistance I was feeling. I asked,

How does it feel to read [those summary statements]? Is it easy to believe they’re true? Do you believe they apply to you (or the families you serve)…?

Just as I asked you to do, I let the questions tumble around in my mind for weeks. I noticed feelings of hope, apprehension, frustration and self-doubt. I was frustrated by the simplicity and neatness of the “nutshell” statements compared to the messy, complex, and sometimes colossal reality of stress and anxiety that is often part of parenting a child on the autism spectrum.

Stress, slush and transformative practices

On a cold, rain-sopped spring day, I came upon an apt illustration: Experiencing chronic stress is like trying to walk in deep slush. You pull your foot up only to have slush surge around your ankle with each step. You look ahead to firmer ground, but each straining step makes little progress and spends precious energy. Small distances feel like miles.

So, rationally, we may believe that how we understand our circumstances matters for our well-being. We may believe that small, daily practices can reduce stress. But how do we take steps to manage stress when we’re flooded with it? I’ll share some learnings that I’ve gleaned from mindfulness, many wise friends, and more moments of burnout and beginning again than I care to remember:

1) Grow an attitude of acceptance. Accepting reality can reduce uncertainty and help ground us in now (versus reaching for solid ground). Acceptance says, “Yes, this is hard. It has been hard. We can expect that it will be hard. It has also been delightful and beautiful and will continue to be so. So here we are.” Come back and sit in this place of calm acceptance and gratitude, especially when you notice yourself straining to be somewhere else or wanting to swap your circumstances for someone else’s.

2) Assemble a stress toolbox. Maybe we need to strap some snow shoes on over our rain boots so we don’t sink so deeply as often. Perhaps we can set aside times to rest and breathe along the way. From a place of acceptance, we can more readily ask for help, a key step in building out our village of support. For me, building mindfulness practices into my day has helped me better apply all the other tools in my stress toolbox.

3) Take steps 1 and 2 alongside supportive friends and allies, over and over. Need help building your support network? Contact us and we’ll begin together. Subscribe to our blog for a breath of fresh air from our Oxygen Mask podcast series (launching April 30).

These are not revolutionary ideas, but they are transformative practices. And, in order to be useful, practices must be, well, practiced. I urge you (and remind myself) to try them. Practice makes progress.

Magnifying glass

February 5, 2019
by Beth

Research on Mindfulness

Tonight is the start of our Mindfulness-Based Stress Reduction course for parents of children with special needs. We use a MBSR curriculum designed and researched by Vanderbilt University and based on the foundational work of Jon Kabat-Zinn. In this post, we’ll focus on what the Vanderbilt research team learned in implementing their curriculum.

In diving into the findings, however, we are jumping over a sobering truth laid out in almost every mindfulness research article reviewed: Stress is a big problem for parents of children with autism and it has serious consequences. The statistics are sobering the stories behind them hit eerily close to home. Many of CEA’s early 2019 blog posts and newsletters will discuss parental stress and supports in honest, pragmatic ways that acknowledge how families function together, as a system. As always, we will keep our emphasis on hope, empowerment, and community-building.

For now, let’s find out what the Vanderbilt University’s team learned when they implemented their “Parent Stress Intervention Project”—a project that included two different curricula or approaches to “stress intervention.” They enrolled 243 mothers of children with autism (65%) and other neurodevelopmental disabilities (35%).

How they conducted the research:

The mothers were randomly assigned into one of two groups that met for 6 weeks and were led by trained peer parents. One group, the Positive Adult Development (PAD) group taught ways to balance difficult emotions with positive, affirming ones (using evidence-based methods from positive psychology). A second group, the Mindfulness-Based Stress Reduction (MBSR) group taught specific techniques for breathing, movement, and meditation from mindfulness research and practice. The participants responded to several questionnaires before, during, at the end, and at 1, 3, and 6 months after the program.

What they found:

  • Mothers in both programs showed “less personal stress and dysfunctional parent-child interactions…[and] less anxiety and depression, and improved sleep and life satisfaction”
  • The last four self-report measures (above) sustained up to six months after the program ended
  • The size of the effects on both groups of mothers were medium to large for depression and anxiety
  • Mothers in the MBSR program showed “significantly greater improvements” than mothers in the PAD program
  • While mothers of all diagnosis types responded similarly, mothers of children with ASD showed less immediate improvements in anxiety

The researchers supposed that the improvements across both of the groups was related to the program’s structure, which integrated practices already known to enhance well-being: The group setting, the peer mentor leadership, and the choice to focus directly on parent stress and needs (versus a more traditional parent training program focused on the needs of the child). The team acknowledged that there wasn’t a control (aka “treatment-free”) group to compare to, however, they pointed to a wealth of research documenting the stressful realities of these parents.

Take-aways and food for thought

So what do we make of all this? Both programs showed a great deal of improvement on several different angles of stress and well-being, with the MBSR program showing the greatest improvements. The social support built into the programs likely did play a role, as did the working with thoughts and feelings (PAD) and the mindfulness exercises (MBSR).

In a nutshell, the research teaches us that 1) How we understand our circumstances matters for our well-being, and 2) Small, daily practices can make a big difference. Marvel at the simplicity of those statements. Amazing, right? How does it feel to read them? Is it easy to believe they’re true? Do you believe they apply to you (or the families you serve) and not just the research participants? Or maybe they seem somehow inaccessible, like they’re taken for granted yet just out of reach. If so, why do you think that is?

Let these two research teachings tumble around in your mind for a week or so. Try to avoid either/or and this-versus-that thinking. Think both/and, as in, “there are ways to acknowledge my own needs and be my child’s best advocate; I can do my best for myself and my child.” Thank you for endeavoring on this thought experiment. We’ll pick up the conversation with some research- and experience-informed perspective on stress and well-being in the next blog post.

Citation: Dykens, E. M., Fisher, M. H., Taylor, J. L., Lambert, W., & Miodrag, N. (2014). Reducing distress in mothers of children with autism and other disabilities: a randomized trial. Pediatrics, peds-2013.

Click here to access article and PDF.

Child’s marker art with hearts and stars

January 15, 2019
by Editorial Team

Recap, Tools from “Bigger Than Birds & Bees”

We’d like to share some additional details and tools for those who couldn’t come to our November 27th event on healthy relationships and sexuality with Katie Thune. Our discussions surfaced a gap between people’s own experiences with sex ed growing up and what we hoped children would know about healthy sexuality and relationships. We hoped for less stigma and shame and for ongoing, consistent conversations rather than an awkward, one-time, get-it-over-with “talk.”

With her rich examples and concrete tools, Katie helped bridge this gap. The neutral language and visuals provided scaffolding for learning.

Scaffolding to structure and support conversations about sexuality and relationships:

  • Public and Private Behaviors and Places: Katie categorized behavior in terms of public and private behaviors. She encouraged people to ask themselves three questions in considering whether a place is private: Does it belong to me? Can people see me? Am I alone? Quite simply, if the answer to any of these questions is “no,” then it’s a no go!
  • Healthy and Unhealthy = Non-shaming, honest language. Katie pointed out that talking about behavior, body parts, or relationships as “good” and “bad” can bring about a sense of shame. Instead, “healthy” and “unhealthy” are more neutral words that guide us toward understanding ourselves and our needs as well as others’ needs in relationships and in shared spaces.
  • Keep Sight of the Heart of Relationships. An intuitive and powerful visual (below, shared with permission) of what constitutes a healthy relationship, Katie’s Heart of Relationships model is a reference point for parents and kids to recognize and discuss healthy and unhealthy relationships. How do each person’s behaviors map onto the pieces of a healthy relationship? Take time to identify and discuss unhealthy and healthy behaviors.


Heart of Relationships - Katie Thune


Use these ideas and concepts in social stories and role plays (only modeling appropriate behaviors), in developing plans with individuals and teams, and in crafting clear rules. Repetition and consistency are key and remember to debrief incidences in non-reactive/non-shaming ways to utilize these social learning opportunities.

Finally, here are a few books that align well with Katie’s teachings:

It’s So Amazing!; It’s Not the Stork!; and It’s Perfectly Normal! (All by Robie H. Harris)
Listening to My Body and Listening to My Heart (Both by Gabi Garcia). Katie mentioned this book for guiding children to read, interpret, and respond to their own intuitive signals.
No Means No; My Body, What I Say Goes; and Let’s Talk about Body Boundaries, Consent, and Respect (All by Jayneen Sanders).

Katie welcomes questions and shares videos, resources, and more book suggestions on her website, www.sexualityforallabilities.com.