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.
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:
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?
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.”
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.
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.
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!!
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.
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.
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.
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:
I can feel myself being drawn in again to the New Year’s resolution hustle. Here’s how it goes down: A post-holiday mix of relief and fatigue settles in. Cold days with few routines fumblingly unfold. Seeking more structure, a sense of accomplishment, and coming off of a dopamine-rich December, I grasp outward-elsewhere-forward to the self-improvement hype.
Grabbing onto a new “I should” or two borrowed from friends’ habits, articles from my Facebook feed, or best-selling authors, I challenge myself to stick with my resolutions this time. Listless, I begin five projects while stepping over still-packed travel bags and over kids playing with toys. To be sure, these mid-winter days are not the stuff SMART goals or resolutions are made of.
This year, I am replacing resolutions with intentions. A resolution is “a firm decision, being determined or resolute, or solving a problem,” whereas an intention is “an aim or a plan, the healing process of a wound (in medicine), or conceptions formed by directing the mind toward an object” (paraphrased from the Oxford Living Dictionaries). Some may see intentions as noncommittal or weak compared to resolutions. I am beginning to see intentions as significant growth. Shifting my outward-elsewhere-forward striving toward grounded and hopeful intentions is a daily practice that has been transformative.
Learning and Then Learning the Hard Way
Releasing my grip on resolutions and gently holding intentions is a practice rooted in both mindfulness and burnout. A few years ago, I took CEA’s first mindfulness course offering. I learned a great deal. I found two favorite mindfulness practices. I embraced a fellow parent’s advice to shift my internal voice/critic and try speaking as I would to a good friend. I tried to embrace “attitudes” at the core of mindfulness-based stress reduction: Mindfulness, non-judging, patience, beginner’s mind, trust, lovingkindness, non-striving, acceptance of reality, and letting go.* They felt unfamiliar, wishy-washy, and apathetic compared to the “try harder, push through, figure it out” attitude that I had relied on for most of my life. So I took what I felt was useful from the course and kept on moving.
In the following years, it became clear that I had more to learn. I was utterly exhausted with chronic muscle pain, headaches, numbness, sleeplessness, and frequent illness. Stress-induced burnout forced me to let go of my push through attitude. My body gave me no choice but to listen. I’m glad I had those mindfulness resources as a foothold during what felt like a free-fall. I tried out the attitudes I had discarded earlier. Acceptance of reality meant accepting many stressors as part of my work, my relationships, and my special needs parent role. “If this is the way things are, how do I do this?” I wondered. I had to do things differently. I entertained thought experiments with other mindfulness attitudes. “I don’t need to tackle this issue right now/by myself. I’ll let it be for a day or ask for help” (attitudes of patience, non-striving, trust). “Of course this is hard, it’s new to me and emotionally charged. I need to give myself a lot of grace right now” (attitude of lovingkindness). Non-striving, non-judging, and letting go, in particular, are certainly not part of my brain wiring. Fortunately, my brain It doesn’t seem to know the difference between daily thought experiments and a complete overhaul. Thanks to small, intentional shifts, it spends a lot less time in fight-flight-freeze mode nowadays.
Intentions: Nudging through 2019
My main intention this year is to keep noticing my beliefs and attitudes and keep nudging them, little by little, with mindfulness attitudes. I also look forward to deepening the practices that rejuvenate me (hiking, Quijong, breathing breaks) and continuing to connect with friends and teachers whose examples deepen my commitment. I know being a part of CEA’s Mindfulness-based Stress Reduction for Parents course beginning January 29th will support my New Year’s intentions.
I encourage you to try replacing resolutions with intentions this year. Having a disability and/or parenting children with disabilities requires daily gumption. It’s natural that we have little or no resolve to heap on for a relatively arbitrary square on the calendar. Smaller, gentler intentions can be more sustainable, healing, and kinder to our souls. Even the smallest nudges create ripple effects.
*Various adaptations exist, but all are based on Jon Kabat-Zinn’s “Full Catastrophy Living.” See video descriptions.
Each day of the week has a unique sound. I have learned to notice this because my sweet daughter finds a wide spectrum of auditory moments unbearable. Sundays, according to her, are the quietest days. Quiet makes navigating life easier for her.
Her need for opportunities to navigate life in quieter ways is how I came to be passionately interested in creating, supporting, and attending sensory friendly events. My favorite sensory friendly event is the program run by the Walker Art Center.
Sunday mornings, the quietest moments of our weeks, are the perfect mornings to explore the Walker Art Center. On the second Sunday of every month, the Walker opens its doors to welcome individuals that need sensory friendly peace to explore the galleries, art lab, and a short film.
What makes Walker’s Sensory Friendly Sunday Unique?
Unlike a number of sensory friendly programs that offer a limited time head start to an experience, the Walker’s Sensory Friendly Sunday is a beautiful three hours of peace, inclusion, and acceptance. Visitiors get to settle in and truly enjoy the space in their own ways with the ease of knowing they will be welcomed, supported and encouraged to discover the place without having to hurry through before the rest of the world arrives in 60 minutes. There is time to adjust to the vastness of the building and the noises unnoticed by most, time to step into a gallery and figure out if the latest wild exhibit captures your imagination or if it is not your cup of tea. Having the time to discover what you don’t enjoy is just as important to discover what fuels you. Having time to revel in what you enjoy is an incredible gift.
Each month, lights are lowered, sounds reduced, and an artist is featured with a new project to dive into that every age and ability can enjoy. It is a joy to watch each artist share their passion with visitors and help adapt projects so all can create. Seeing a variety of generations and abilities creating together is magical. Art is a language we can all share. It can help people express themselves in new ways.
Come as You Are
Since the events launched last spring, I have seen a true community form around this event. Some people have been coming since the very first event and have created friendships with other families. People feel accepted in all their beautiful uniqueness. No shushing. No harsh looks of judgement. There are cozy corners to find some quiet. Grab fidgets and headphones in case you need a bit of extra support. Enjoy art, lots of wonderful art!
The next Sensory Friendly Sunday is THIS Sunday, December 9th from 8am-11am. Take in a fun, peaceful event in the wild whirlwind of the holidays. Add the second Sunday to your calendar going forward. A regular sensory friendly, accepting event on the calendar throughout winter is sanity saving!
This program for people with need of sensory friendly modifications was designed by incredible Walker staff, artists, parents, and self-advocates—people who know that the arts plus acceptance creates powerful community connection.
So, visit their website and make a reservation. The program is free, but reservations are recommended. The Walker caps attendance to maintain the peaceful environment. They offer wonderful supports on their website to help plan your visit to the museum. Make art, see art, and enjoy a magical opportunity to come exactly as you are.