Child’s marker art with hearts and stars

January 15, 2019
by Editorial Team
0 comments

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.

Pink and blue painted eye

December 30, 2018
by Beth
0 comments

New Year’s Intentions

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.

Replacing Resolutions

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.

Sensory echo image

December 6, 2018
by Jen
1 Comment

The Quietest Day of the Week

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.

In the Middle of Fall

October 16, 2018
by JeanneLovesBooks
0 comments

Jeanne Loves Books – October

In the Middle of Fall by Kevin Henkes

In the Middle of Fall, written by Henkes and illustrated by his wife, Laura Dronzek, reads like a lovely poem to the experience of Fall. The first pages read,

In the middle of Fall,
When the leaves
have already turned

and the sky is mostly gray
and the air is chilly

and the squirrels are frisky…

There is simple and large text on each page highlighted with glorious illustrations in autumn hues. In typical Henkes fashion, the images offer ripe invitations for discussion. For example, a two-page spread that reads, “and the gardens are brown,” features a deep blue sky contrasted by brown earth and mighty, drooping sunflowers. There is a mouse peering over one big sunflower head and a big yellow bird is pecking away at the seeds in another head. These withered sunflowers are attractive to the animals. Why?

Words like frisky, ornament and gust are so rich. There is also a lovely lyrical quality to the text. On one spread, plump red apples drop from branches, accompanied by an observation that “the apples are like ornaments.” Take this moment to stop and talk about how the apples are like ornaments.

In the Middle of Fall ends with a lovely transition to the next season, Winter!

Fun with Reading

Falling, colorful leaves are a major part of Fall. They offer opportunities to talk about same and different: there are round leaves, pointed leaves, big leaves and small leaves etc. Play in the leaves, toss them in the air, and look closely at each one! Tuck one into your book to touch while you read.

Person-centered thinking

October 8, 2018
by Tanya
0 comments

Person-Centered Thinking: What Is It?

Person-Centered Thinking is putting the person first. Through history, the treatment of people with disabilities and the services they receive have been glum. The focus has has been mostly on keeping people healthy and safe, leading to a one-size-fits-all approach in segregated schools, special education classrooms, institutions, group homes, and vocational rehab programs.

Person-centered thinkingAs a community, it is imperative we start looking at each individual person to discover what is important to them to live a life that is meaningful and purposeful to them. Person-Centered Thinking is about truly listening to people who receive services as they pursue their hopes and dreams. Every person has a dream no matter how big or small. As people continue to grow and change, so do their hopes and dreams. The team of people who provide support must recognize these changes and be the champions for the person to see the goals come to life.

A Process that Digs Deep

The Person-Centered Thinking process digs deep, looking at a person’s rituals, routines, likes, dislikes, relationships, and communication styles. No one fits in a pretty little box. All people want to be heard and listened to regardless of their communication style. As an adult, I have control of the life I want to live. Everyone should be able to have a say and control of their lives regardless of their disability.

As a state, Minnesota is required to provide person-centered services for people with disabilities. Minnesota’s Olmstead Plan lays out activities for state agencies “to ensure people with disabilities are living, learning, working, and enjoying life in the most integrated setting.” Person-Centered Thinking is a central to this end. This must be the way we support the people we love and those we support.

Listening Changes Lives

As a Person-Centered Thinker and Planner, I have witnessed the incredible value it has for all people. Lives are changed for the better when we open up our minds to listen. From a young man moving from supported living with four roommates into his own apartment he hopes to soon share with his fiancé, to another woman building her own creative business on Etsy and training others on Person-Centered Thinking, powerful examples abound.

As a mother to a now 18-year old man living with autism, I have seen Person-Centered Thinking give my son the opportunity to be heard and supported in a way that he chooses. He now is living a life of purpose and meaning that he shaped versus the life others believe is best for him. All people want to be heard and valued. We all want to be contributing members of society.

For more information about Person-Centered Thinking, please visit the Learning Community
website at http://tlcpcp.com/.

September 24, 2018
by Beth
0 comments

Communities Engaging Autism

Big news!! We’ve changed our name from “Center for Engaging Autism” to “Communities Engaging Autism.” You’ll see this change unfold on our website and social media in the coming weeks.

Why Communities Engaging Autism?

Here’s the short version:  We’ve heard repeatedly that “Center” was confusing. We aren’t a physical “center” that provides therapeutic services. We do provide education, training, and information. For me and, I hope, for many of you, CEA’s offerings have also provided a sense of connection and community.

Despite the name change, our mission is the same: Connecting young families living with autism to the information, strategies and support they need to engage fully in their homes, schools and communities. We are dedicated to building bridges between research, practice and everyday life.

In my enthusiasm, I’ll offer my perspective on this change as well:

1) I think Communities Engaging Autism better reflects our vision for Social Engagement, Empowered Parents, and Involved Community Supports. These three interconnected, dynamic layers are a foundation for inclusive communities and healthy individuals and families.

2) “Communities” captures the character of our organization. CEA is a far-reaching and flat organization deeply rooted in personal and professional relationships among parents, individuals with autism, writers, teachers, therapists, trainers, and others. We are creative, flexible, and collaborative learners who share our strengths and contributions. We meet in familiar community spaces where families can connect to one another.

I have much more to write on the words we have chosen to use. I will post again next month about how I envision CEA living into those words. I’d love to hear your thoughts: In what ways does “Communities Engaging Autism” reflect (or not) your experience here? Comment below or contact us with your thoughts.

September 3, 2018
by Beth
2 Comments

School Day Mornings Are Like Onions

Onions

While cooking this weekend, my mind wandered to back-to-school logistics. I had a nagging feeling of anxiety. It wasn’t about teachers, academics, or IEPs. No, not yet at least. My anxiety was about mornings and had been building for awhile.

The white teardrop center of my halved yellow onion fell onto the cutting board. I put it back into the crispy, potent layers and kept slicing. My eyes started to sting and soon I was chopping with tears running down my cheeks. You’re probably wincing in anticipation of the part where I slice into my finger. That didn’t happen. Our mornings are rough, but [usually] not that rough.

One reason I see similarities between school day mornings and onions is because of the stinging frustration that builds into a blur all too often. Shoot, I need to pack lunches! “Honey, if you don’t get down here now, you won’t get breakfast!” He knows I won’t withhold breakfast. I know yelling from downstairs doesn’t work, so why do I keep doing it? OUCH!! Damn those LEGOS! “Darling, put this on please.” I recall driving to school tense and with a lump in my throat, trying to reassure my angry daughter who has been waiting for a half-hour. I dare not recall last year’s tardy tally.

“This year will be different,” I reassure myself, scraping the chopped onions into the frying pan.

The second reason school day mornings are like onions is that there are so many layers to the issue of what makes mornings challenging. Thinking through the layers has been insightful to me. I hope it resonates with other parents and that my humble reality check is reassuring.

On the outside layer, I’ve long been focused on my son’s autism. I am fluent in the “what might be going on here” lingo: self-care tasks, executive functioning, motor planning, and anxiety. Having a name for what’s happening and knowing what to do are two very different issues. From early childhood to the round of occupational therapy my son just finished, we received ample support, but nothing seems to stick. Honestly, I feel strained and wary of the latest “great idea” for our perennial struggle. With the exceptions of the universally useful checklist on the way out the door and our whiteboard weekly schedule  other visuals are initially interesting but not sustained.

Environment is another layer of this metaphorical onion. I realized when puppy proofing our home (add five onion layers) that clutter was a problem. Stacks of books and piles of laundry line our living room. Mail, art, and notebooks clutter our countertops. Legos, dolls, and science projects bury the bedroom floors. Welcoming puppy forced us to declutter. Moving most toys out of my son’s bedroom has made clean-up easier and covering the LEGO table with a sheet at night cuts down on first-thing-in-the-morning building. I feel more focused and less overwhelmed too, at least when the puppy is sleeping.

I know that sensory input and physical activity are another layer. The few mornings that we get outside to swing or take a bike ride before breakfast have been fantastic and refreshing. But urging either child out of bed, through the bathroom, into shoes, and out the door before I have had my coffee is a rare feat.

I am also realizing that my patterns and wellbeing are a central layer. I so enjoy the quiet of the late evening that I stay up too late and shirk my morning prep duties in favor of reading or relaxing. Anticipating our frustrating mornings from my warm pillow makes getting started seem impossible. And, recently, when the occupational therapist named “time management” and “organization” as areas to continue working on with my son, I felt like my cover had been blown. Time management and organization have always been challenging for me! Luckily I have some gradeschool-level supports to help me. So, here I am, at the teardrop center of the onion. This is where little-by-little growth begins. Excuse me while I go pack lunches and get to sleep.

August 17, 2018
by Beth
0 comments

Jeanne Loves Books: August 2018

The Big Umbrella was cowritten by a mother-daughter team, Amy June bates and Juniper Bates. The two were inspired by sharing an umbrella in a rainstorm. The Big Umbrella is a sweet, wrap-its-arms-around-you book with limited text, lovely clear illustrations and a gentle message of inclusivity and generosity.

The story begins with a two-page illustration of a plain hallway with a big, red umbrella leaning against the door. “By the front door … There is an umbrella.” An observant little reader will spot the lines of a mouth, nose and closed eyes on the umbrella. A child dressed for rain goes out with the umbrella in hand. We see the top of the umbrella against the outline of a city skyline on one page and then we turn to a full two page spread with the umbrella fully open. “It is a big, friendly umbrella…It likes to help.”

The pages describe numerous ways the umbrella helps and how it gathers various creatures under its ever-expanding span. There is some wonderful humor as we see web feet and hairy creatures sticking out from under the umbrella along with various children. “It doesn’t matter how many legs you have, … There is ALWAYS room!” The final illustration reveals the humorous and joyful gathering under this generous umbrella.

Fun with Reading:

Notice the different expressions on the umbrella and talk about what they tell us.

Notice the end pages. What do the illustrations of the inside front and back cover tell us?

Identify and describe the different people and creatures on the final two pages.
There is a lot there including an octopus, dogs, chicks, a ballerina, families….

July 22, 2018
by Beth
1 Comment

Care Mapping: Sketch Your Resources

Have you ever heard of care mapping? It is “a family-driven, person-centered process which highlights a family’s strengths and communicates both the big picture and the small details of all of the resources needed to support a child and their family” (Antonelli & Lind, 2018). I learned about care mapping in a fellowship training last fall and was immediately drawn to the colorful, visual way of capturing information.

A few months later, I joined my kids around the pile of colored pencils and sketched our care map. It started with us, right at the center. It branched out to include formal and informal relationships and resources. Of course, a lot of the circles related to my son’s needs, but I put myself on the map too. I defined “care” broadly to encompass overall wellness. I hope my daughter and husband will add their resources and relationships too.

Care map branching out from center with multiple colors

My rough care map. Aim for progress, not perfection.

Sketching the map felt like a gratitude practice. I recognized the almost-family relationships of support we enjoy and appreciated how a sense of community builds my resilience. I realized that our network of specialists and therapists has grown in recent years to the point that we, at least for now, have the right people in the mix for our needs. I also saw how each family member contributed his or her strengths to support one another.

The mapping process also helped me realize that, in an effort to be efficient and provide relevant information, I unconsciously filter details with each of the professionals we work with. What’s relevant to the occupational therapist versus the pediatrician versus the social/emotional coach/therapist? Do meltdowns and emotional reactivity fall into sensory or social/emotional category? Both? Or maybe they’re related to executive functioning. Which specialist deals with that anyway?

This filtering can be problematic. My assumptions about each person’s expertise might not include the full picture. My understanding of the numerous labels (i.e. motor planning, executive function, pragmatic language, etc.) are likely incomplete. I am pretty good at sleuthing out the root of my son’s struggles, but I often struggle with stress and fatigue. Connecting all the dots over time can be really challenging. I am hopeful that our care map can enable others to get a sense of our whole picture and improve communication and coordination.

Finally, I experienced recently that having the care map in my mind’s eye helped me handle the information overload that came with our educational evaluation process. After reviewing a 25-page evaluation documenting his strengths and challenges, I was losing sight of the child at the center of it all. My mind was drawn to the details, the terminology and measures. But envisioning the circle of my son and our family, I felt more confident naming my child’s struggles and strengths in terms of my day-to-day observations and the patterns his teacher and I had seen through the school year. I rooted down in my circle. My concrete comments generated input from our team that made sense to me and included examples of what was working and what could change in the next IEP.

I encourage you to grab some of the Crayons laying underfoot and get started. Remember, care mapping is a process you will revisit and change. Check out some of the ideas and resources below for more guidance. Don’t overthink it and, please, put your own resources on the map!!

Ideas as you sketch

  • Use a different color for each family member. Add multiple colored outlines around shared supports/resources
  • Add dotted lines to illustrate which circles work well with one-another (i.e. school and therapist). Recognize and celebrate the unique asset that these connections are!
  • Add a grey shadow around circles to represent past versions of a resource/support. For example, include a grey shadow a school or clinic your child no longer attends. This history is often the source of valuable learning and important relationships.
  • If you prefer, try a mind mapping app

Additional resources:

Check out care map creator and special needs parent, Cristin Lind’s website for her story and map.

See Boston Children’s Hospital’s research and PDF handouts for families and professionals.

Comment or email to let me know if you find a care map useful and how you use it – info@cea4autism.com

June 20, 2018
by JeanneLovesBooks
0 comments

Jeanne Loves Books – June 2018

Go Away, Big Green Monster! by Ed Amberley

Monsters are fascinating and scary for kids. Monsters can be in a dark closet, under the bed or in any unexplored, dark spot. Usually, the idea of monsters is fun or exciting, but it can also lead to serious childhood fears.

Go Away, Big Green Monster! is a book for preschoolers that builds a monster and then sends the monster away. The book contains many cutouts showing different parts of the monster’s face in bright colors, one page and one facial feature at a time.

The first page shows two cut out circles with yellow eyes and large size print that says, “Big Green Monster has two big yellow eyes.” When you turn the page, the cutout on that page shows a green nose between the two yellow eyes and says, “and a long bluish-greenish nose.” It continues to add a mouth, teeth, ears, and hair. This first half of the book is done when we get a big cutout and a “big scary green face!” The next page declares, “YOU DON’T SCARE ME! SO GO AWAY, scraggly purple hair!” And so the process of sending the monster away, part by part, begins.

Building the monster feature by feature, telling it that “YOU DON’T SCARE ME,” and then sending it away bit by bit gives the child a lot of control. That is empowering. And it’s really fun.

The text is limited and large. The language includes several adjectives to describe each part of the face as in “scraggly purple hair.” This creates a rich pattern for thought and conversation.

Fun with Reading

  • This can be a very interactive book. It is fun to wag your finger and yell along with the child you are reading with to the statement, “You Don’t Scare Me!”
  • It is also fun to gesture with your hand and repeat with your child the refrain, “go away (teeth, hair, ears etc.).
  • Talk about the adjectives, “squiggly” and “scraggly,” and see if you can find some other examples. Add an additional adjective when describing something and have your child try doing the same.
  • Talk about monsters.