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
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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.

June 3, 2018
by Beth
0 comments

Hello and Thank You

Hello CEA community!

If you’re like me, you may have read Shannon Andreson’s “Farewell but not Goodbye” post and wondered, “now what?”. In sharing her decision to step down as executive director, Shannon reflected on the ebbs and flows of a child’s developmental journey and the way families respond and adapt.

Resisting my tendency to worry, I focused on my gratitude for Shannon’s leadership and the way the Center for Engaging Autism provided me with information, support, and meaningful relationships during the challenging early years of my family’s autism journey. During that time, my energy and resources ebbed—information, terminology, forms, and systems drained me, leaving uncertainty, overwhelm, and fear. For me, a return to a relative state of “flow” came slowly through building relationships with other parents who “get it” and who model what it looks like to understand and honor their children and themselves as whole, complex people. Realizing that I wasn’t alone and that others walked the path ahead of me was like that moment of pause when an ebbing wave begins to flow forward again. I have gradually channeled this energy into writing, learning, community-building, and advocacy related to autism, family as an asset and an adaptive system, and community as the place where we grow and connect.

Gratitude, hope, and trust prompted me to pursue the executive director position. I am so humbled and honored by this opportunity to contribute to the organization that has helped me “grow up” or, more accurately, “root down” as a parent within a rich community. I am immersing myself in the supportive network, knowledge, resources, and creative endeavors that Shannon, the CEA Board of Directors, and so many talented members of our community have cultivated over the years.

I will most definitely be in touch, and I look forward to meeting you and growing together.

-Beth Dierker

sensory friendly

April 17, 2018
by Editorial Team
0 comments

Sensory Friendly Sunday at the Walker Art Center

Sensory Friendly Sunday is a monthly, free event for kids, teens, and adults with Autism Spectrum Disorder or sensory sensitivities and their families. Make art together, explore the galleries, watch a short film, or just hang out in a beautiful setting.

The Walker has been working with a range of community partners to provide the Twin Cities with the first art-focused, sensory friendly program in a museum. The galleries will be closed to all other visitors, allowing guests to enjoy the museum in an environment where accommodations such as quiet spaces, headphones, and fidgets can be provided.

In order to ensure an optimal experience and avoid crowds, we encourage you to reserve your space ahead of time. Registration is available below.

First one is Sunday, May 6

For more information, e-mail access@walkerart.org or call 612.375.7610.

not norman

April 16, 2018
by JeanneLovesBooks
0 comments

Jeanne Loves Books – April 2018

Not Norman:  A Goldfish Story by Kelly Bennett

A young boy wants a pet. He wants a pet he can play and snuggle with. When he gets a goldfish in a bowl named Norman he is really disappointed. “All Norman does is swim around and around and around and around…” This is definitely not the pet he wanted.  NOT NORMAN!

Our young guy tries a number of ways to get a different pet. He tries to trade Norman to a friend who has a lot of puppies. He prepares a great sign, “Norman, One Amazing Fish” for show-and -tell at school in hopes that one of his classmates will want him. Nothing works.

In the meantime, Norman starts proving his worth. He is always there and shows some personality. When our young narrator finally makes it to the pet store and checks out all the other options, he decides to keep Norman. The others “all look like good pets, but they are….NOT NORMAN.”

The cover of the book is a good example of the delightful illustrations throughout the book. They are clear, colorful and frequently include easily identifiable emotions. There is great repetition with Not Norman being a frequent refrain. The text is limited but does include words like twitches, gunky, rescue, tuba, Maestro.  There is lots of informal language too, like googly-eyed, goofy, yikes.

This is a sweet story about overcoming snap judgments about something or somebody. It is also an encouraging story about the value of a pet goldfish for those children whose choice of pets is limited because of allergies or other issues.

Fun with Reading

  1. Word or phrase repetitions are always fun – after the second or third repetition you can pause, point and wait for your child to join you in “reading” it
  2. On a number of pages stop and explore the emotions being depicted in the illustrations
  3. Notice the literacy examples in the story: The parents have included a book, Your Fish and You along with Norman in his bowl. Ask why that is a good idea.
  4. Talk about what role pets play in families
books

February 12, 2018
by JeanneLovesBooks
0 comments

Jeanne Loves Books – February

Mine!,  by Susie Lee Jin, is a seemingly simple book talking the big concept of sharing.

Sharing can be difficult for preschoolers  – and for the rest of us depending on the occasion and the item to be shared. Years ago, the almost four-year-old son of a friend took off his coat after coming home from preschool and with a very unhappy face asked, “How much longer does this sharing go on?”

In Mine!, two bunnies sledding down a hill find a carrot. The carrot attracts more bunnies, all of whom want the carrot. There is a fun twist at the end with a great opportunity for guessing whose carrot it really is. The story is really told through the illustrations of the bunnies who are the main characters. The illustrations are large and the faces are drawn with lots of emotion. There are really only three different words in the text:  mine!, ours!!, and yours.  The word mine appears 14 times in the text in various font sizes.

Fun With Reading

  • Using a story like Mine! to engage your child in a concept like sharing is a great way to explore it and the accompanying emotions.
  • Use the wonderful illustrations to help your child recognize facial expressions and their meaning
  • Can your child identify the emotions on the faces?
  • What does s/he think of the way the different bunnies claim ownership?
  • Can s/he guess from the big clue who really owns the carrot?
  • Should the one who first had it and lost it get it back?
  • What do they think of the ending?
  • Have they had some hard times sharing? Have you?
  • On the third or fourth mine!, pause and see if your child will “read” the word

If you want to explore this topic further, here are a couple other titles:

Should I Share My Ice Cream? by Mo Willems and It’s Mine! by Leo Lionni

February 9, 2018
by Shannon
0 comments

Conversation with Families at The Works Museum

The Works Museum is hosting a conversation with families who have previously visited the museum, and who have a 5 to 12 year-old child/children on the autism spectrum. They’d like to hear about your experience during family visits to the museum, as well as any museum programs your child has participated in. The Works Museum seeks to be more welcoming to learners with autism and their families.

There are a limited number of spots available – you must RSVP to attend. Email kit@theworks.org by February 12th if you are able to join us.

Supervision will be provided for children ages 6-12 who would like to explore in the museum during the conversation. Please let them know in your RSVP if you would like to take advantage of this offer. Include the number and ages of your children, so staffing can be arranged.

  • When: Saturday, February 17, 9:30 – 11:00 am
  • Where: The Works Museum, 9740 Grand Avenue, Bloomington 55420
  • Conversation will take place in the Group Lobby at the Museum
  • Coffee and pastries will be served
writing

February 5, 2018
by Editorial Team
0 comments

Writing Workshops

Do you have stories, ideas, and experiences to share? Of course you do! Join Cow Tipping Press for our Spring Creative Writing Workshops (no need to type of write by hand) and craft some works that showcase your unique gifts and voice with the world! By the end, you’ll walk away a published author with a book of your own writing in hand.

Workshops are hosted at Hayden Heights Library at 1456 White Bear Avenue St. Paul

Thursdays February 15-March 8, from 5:45pm to 7:45pm, followed by public reading and book release.

Workshops are free of charge, thanks to the Dakota and Ramsey County Autism Grant!

Register here by February 8!

advocate

February 2, 2018
by Shannon
1 Comment

Farewell but not Goodbye

One of the most impactful lessons I learned from my wonderful Early Childhood Family Education teacher was that child development is a series of ebbs and flows, much like the tide. I have hung onto this rhythmic imagery as I have parented my sons. It eases my stress in times when we seem to be going nowhere or even rushing back to developmental places I thought were long behind us.

As with all things with autism, the ebbs and flows analogy applies to my son with autism, but to a much greater degree. Our ebbs are severe, and our flows are giddy and disorienting. Often I find myself standing, fixed, on shifting sand as a bulwark against these swirling developmental forces.

But sometimes with autism we get stuck, or we lose our moorings, or the sand erodes beneath our feet so rapidly that we lose our footing.

Serving as the executive director for CEA has been a privilege and something that anchored me to a community that honors families living with autism. So many times it brought me back to steady footing. I delighted in forging partnerships and programs that would support families like mine. I gained inspiration and fortitude from the stories of other families. And I have drawn strength from those professionals and parents who worked alongside me to fully engage families living with autism in their homes, schools and community.

Finding a community that supports you for who you are isn’t always easy. In CEA, we have found that. I am incredibly grateful to have been part of this organization and to have been entrusted with leading it.

CEA is the bulwark standing against an unpredictable tide. It remains constant as our community and families develop around it. I will continue to tap into its strength and knowledge as my family continues our journey. And I hope to always be connected, firmly, to this inspiring community.

February 2, 2018
by Editorial Team
0 comments

Work with CEA

Announcement of Position Opening 

Center for Engaging Autism 

Executive Director 

Job Description

The Executive Director of The Center for Engaging Autism is an experienced professional who provides leadership in initiatives that serve young children with autism spectrum disorders and their families. This person is responsible for providing education, for overseeing programs, and for generating financial resources to sustain operations and programs.

Qualifications:

  • Bachelor’s or Advanced Degree; experience preferred
  • Knowledge of ASD including current research findings, history, interventions and trends
  • Program development, management and evaluation experience
  • Ability to set and achieve measureable goals
  • Ability to envision ideas for long range outcomes
  • Experience in setting, operating and managing budgets
  • Proven ability to build relationships that are beneficial to the organization
  • Ability to effectively work with staff, board members, committees and volunteers towards common goals
  • Excellent verbal and written communication skills, including public speaking and social media
  • Experience in developing financial resources to sustain project operations

Deadline

Interested candidates for this part-time position are invited to submit a resumé and letter of interest by March 1, 2018.

Board of Directors
Center for Engaging Autism
PO Box 1344
Minnetonka, Minnesota 55345

info@cea4autism.org