July 16, 2019
by Beth
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Choose CEA on AmazonSmile!

Shopping on Amazon lately? If so, please start your search from www.smile.amazon.com where Amazon donates a percentage of all your purchases to a charity of your choice. You’ll find us listed as “Center for Engaging Autism.” A little bit goes a long way and we appreciate your support!!

Details: You’ll use an internet browser to go to smile.amazon.com and login to your account (all your lists, shopping cart, etc will be the same). Currently, there is no AmazonSmile app and purchases via the Amazon apps will not donate a portion of your purchases to charity. When you login to AmazonSmile, you’ll be asked to select a charity and we’d love for you to choose us!! Click here for AmazonSmile Q & A.

July 16, 2019
by Tera Girardin
0 comments

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!

June 30, 2019
by Beth
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Back and Forth, Up and Down: Families, Community Integration, and Resilience

In April, Beth Dierker of Communities Engaging Autism co-presented with Amy Gunty and Pang Chaxiong of the University of Minnesota at the Autism Society of Minnesota’s Annual Conference. Chaxiong and Gunty both bring a family and cultural lens to their work in neurodevelopmental disabilities and Dierker connected with them thanks to the UMN LEND Program.  The three women’s presentation, entitled “Promoting Family Community Integration: The interplay of family adaptation, resilience, and culture,” wove together big ideas that resonated with participants. Below are some of the key ideas discussed.

Family Journeys

Dierker shared a “process map” of a family journey which combined her experience raising a child with ASD with concepts from studies on family stress, adaptation, and social support. “When we were feeling confused and exhausted,” Dierker recalled, “I just kept reminding myself, ‘We can’t be alone in this. Others have experienced this too. This must be part of a bigger pattern.’” She later found concepts and frameworks around family stress and resilience that resonated strongly with her experience—ideas that graduate students and researchers Gunty and Chaxiong had been exploring and contributing to for some time.

Community Integration

Chaxiong invited participants’ input on what community integration looked like in their lives and suggested that some key indicators of community integration might include:
• Having a support network
• Being able to work or contribute to society
• Participating in recreational activities
• Accessing public activities and community spaces

She pointed out that being integrated in community decreases isolation, increases socialization, and reduces stress and yet many factors make integration difficult for families impacted by ASD (i.e. difficulty/time navigating systems for support, stigma/lack of understanding). The presenters proposed that family community integration and family resilience may have a bi-directional relationship—the strength and growth that comes through the resilience process (discussed below) facilitates community integration. At the same time, being integrated into community provides the resources and support a family needs to adjust for crisis/stressors—a process that characterizes resilience.

Family Resilience

Drawing from research findings, Gunty explained, “Families of children with ASD experience more stress than families of children who develop typically or families of children with other disabilities. Even so, many families of children with ASD experience family functioning that is at least as healthy as other families and report that their child’s ASD positively impacts the family.” She shared the image below to illustrate how families constantly adjust as they try to balance stressors and resources in their lives and make sense out of their experiences in the process (labeled “meaning-making”). She highlighted examples of stressors and resources at the individual, family, and community levels and emphasized that the process of adjustment is dynamic and is unique to each family at any point in time. Gunty suggested that “crisis” happens at the point in time when a family’s stressors outweigh its resources. For some families and situations, crisis is resolved. For others, crisis becomes an almost constant state.

Gunty, 2019. (Adapted from Patterson, 2002)

Meaning making, culture, and resources

As the image illustrates, meaning making plays a pivotal role in the family resilience process. Dierker shared some insights around meaning making and noticing the stories we tell ourselves—examples drawn from personal experience and principles she learned in CEA’s Mindfulness-based Stress Reduction classes for parents of kids with special needs. Chaxiong and Dierker discussed culture as a lens through which we view, understand, and respond to our circumstances. The presentation closed with take-away tools for growing parents’ and caregivers’ resources and support systems.

Now what?

The topics of family resilience and community integration are deeply relevant to Communities Engaging Autism’s mission and vision as well as to our offerings like Family Meetups, mindfulness classes (look for opportunities in 2019-2020!), Lecture Series, and the Oxygen Mask podcast. Over the coming year, the CEA blog will look more closely at the work that informed this presentation and, as always, bring those ideas into practice in the work CEA does to empower and inform you. Thanks for reading!

References

Gunty, A. (2019). Rethinking resilience in families of children with autism spectrum disorders. Unpublished manuscript, Department of Family Social Science, University of Minnesota, St. Paul, Minnesota.

Patterson, J. M. (2002). Understanding family resilience. Journal of Clinical Psychology, 58(3), 233–246. https://doi.org/10.1002/jclp.10026

Email [email protected] for a full reference list from the April 2019 presentation outlined above.

June 25, 2019
by Tera Girardin
0 comments

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
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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
0 comments

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
0 comments

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
2 Comments

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
0 comments

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!!