April 28, 2022
by Shannon
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Creating Space for Caregivers

Over the past few years we have all learned, collectively, how to do things differently. Often this is hard because it involves shifting our mindsets to see and experience resources, supports and space in a whole new way. This is where we all entered into the recent workshops – Creating Support and Space for Caregivers – which highlighted Lifecourse tools for parents.

Exploring respite resources for families that are accessible was one theme. It has been increasingly difficult to find respite providers who are a good fit. Using the Trajectory Tool specifically to problem solve around what respite would look and feel like for your family was helpful, but also frustrating for some, especially for those who haven’t experienced formal respite or don’t see options available to them. Not knowing where to start and feeling overwhelmed is common and difficult. Starting in the “What We Don’t Want” box is often helpful. Many parents found it easier to back into the “Vision for a Good Life” section through knowing what they and their child don’t want.

Common themes/barriers to true breaks from caregiving that emerged were:

  • Lack of qualified/connected programs within the community
  • Caregiver being responsible for plans and/or education and consequences if it doesn’t go well (clean up)
  • Not knowing where to turn for outside support
  • Lack of understanding within extended family

The group also discussed shifting what we see as resources. Often we look outside ourselves and our family when we think of resources. Stress was released when we began to think of ourselves, our partners/extended family and even our child as resources. And we have immediate access to them. Starting from a place that sees what is already there, allows us to fill in the gaps with our family’s strengths and assets.

Examples participants shared of doing this:

  • respite provider who had the right mix of creative activity ideas and sensitivity to a child’s needs
  • person willing to play one-on-one with one child to give the parent space to focus on their other child
  • person who always says “yes” to FaceTime invitations to play Guess Who or BattleShip
  • friend who drops off boxes of Tinker Crates that become rainy day rescue kits
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April 22, 2022
by Beth
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Oxygen Mask Episode 24: Insights from a care coordinator

In Episode 24, Beth interviews Tara Mahin, a Care Coordinator in the pediatric practice that cares for both of Beth’s kids. The two discuss ways care coordinators can help parents of medically complex kids, including parents raising kids with autism. The conversation illustrates how a little help goes a long way in helping families navigate systems more efficiently, lending continuity to care, and providing and a “warm handoff” among providers. Listen in and check out the show notes to learn more about accessing care coordination.

Show notes:

Find Health Care Homes at the Minnesota Department of Health’s website. Health Care Homes include care coordination as part of their services.

Tara Mahin is a Care Coordinator at South Lake Pediatrics in the Twin Cities metro area in Minnesota.

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March 1, 2022
by Beth
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Oxygen Mask Episode 23: Letting things go is hard…and worthwhile

Beth and Tera talk about being intentional about our commitments. They share the process of Tera’s decision to step away from co-hosting the Oxygen Mask Podcast. Making connections to raising children on the autism spectrum, they surface opportunities that have come from doing less. Listen in and be part of this warmhearted “goodbye and thank you” to Tera.

Show Notes:

Consider joining Communities Engaging Autism’s monthly Parent Growth Circles where we support one another in putting our oxygen masks on first (and not swatting them away).

November 24, 2021
by Beth
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Kids’ Packing Checklist: Building independence ahead of travel

Are you hitting the road or taking to the skies for the holidays? I have a tool that might help you share the mental load of preparing for travel. Here is my kids’ Packing Checklist. Here is a version with pictures instead of words. This has been an awesome tool to build both my kids’ independence and sense of responsibility.

This checklist has seen lots of tweaks borne of travel mishaps. Once, I forgot to add pajamas to the list, which made settling in on our first night really hard. Another time, a child who’d jumped in the car after playing in the yard arrived to our summer lake weekend barefoot and without a single pair of shoes packed. Most recently, one of the kids followed the checklist marvelously to pack his bag BUT said left the bag sitting on the bedroom floor—something we didn’t realize until we were hundreds of miles from home. So take advantage of our fumbles, and print yourself a copy with text or with pictures.

TIPS:

  • Slide the checklist into a clear page protector/binder sleeve. Use dry or wet erase markers to add quantities next to listed items, add items, and provide notes, etc.
  • Place the suitcase and the list in your child’s room a few days before travel. The concrete reminder lets them know that the task of packing is ahead. You may want to do this on a weekend so there’s time to support if a) your child jumps right in or b) anxiety or confusion arise.
  • Set realistic expectations. Depending on your child’s ability and experience, you may need to pack together, referencing the list. Maybe your child can pack on his or her own but could use a suitcase check with a parent or sibling before zipping it closed.
  • Bring the checklist and markers along on your trip. Use it as you pack to leave. Not only does this reduce the chances of forgetting things, but it may help ease the transition to departure.

As with many of the tools we share here, this checklist is helpful for all kinds of kids and adults too. Safe travels!

Email me at info@cea4autism.org if you’d like an editable version of this checklist.

Click to access PicsMy-Packing-List.pdf

 

November 17, 2021
by Beth
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Oxygen Mask Episode 22: Sy & Maychee share perspectives on, hopes for autism acceptance in the Hmong-American community

Listen to part two of the conversation with Sy and Maychee. Drawing from experiences and challenges they shared in Episode 21, Sy and Maychee describe their hopes, celebrations, and perspectives as members of Minnesota’s Hmong-American community and the autism community.

Sy mentioned his involvement with the Multicultural Autism Action Network (MAAN) as well as the Supporting all Abilities Welcoming All Voices (SAWV) Facebook group. Part of his work with MAAN included a rich, personal conversation he had with Maychee and shared on YouTube. Check it out here.

Hear’s a brief feature on Maychee from Hmong American Experience.

Acknowledgements:

This Oxygen Mask Episode was made possible by an Family Connections Innovation Grant from the MN Department of Human Services. Communities Engaging Autism is grateful for this financial support.

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October 6, 2021
by Beth
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Oxygen Mask Episode 21: Sy & Maychee discuss autism in the Hmong-American community

Beth is joined by two guests from the local Hmong-American community. Sy, reflects on his educational path and the supports he has or would like to have in order to live well as an adult with autism. Maychee, a mother of a young child with autism, describes pursuing supports for her son. She navigated her family’s reservations that were rooted in stigma and lack of understanding.

Acknowledgements:

This Oxygen Mask Episode was made possible by an Family Connections Innovation Grant from the MN Department of Human Services. Communities Engaging Autism is grateful for this financial support.

August 30, 2021
by Shannon
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Back to In-Person School with Autism

We are midway through our last week of summer and the first day of school is in sight. Despite going back to school in person this year, things feel anything but normal. Anxiety is high and as schools and families wrestle with questions of vaccinations, layers of mitigation, and quarantine protocols, families living with autism have even more to worry about.

The anxiety is high in our house as transitions and routines that were once habits need to be reestablished. From bedtime to morning routines, we are out of practice after 20+ months of distance learning/social distancing. And the social niceties that were once clear have grown rusty from lack of use.

I’m struggling with a feeling of overwhelm and conflicted emotions. Which area to focus on first? What rules will be new at my kid’s school? Will the bus be the same? Will they be safe, successful, simply make it through the day? How will they stay engaged when there’s so much changing in our daily life?

As my own anxiety grows I’ve sought out online resources to help with these questions and more. Here are a few of my favorites:

  • Caregiver tipsheet specific to a new COVID-19 reality with resources like editable or interactive social stories, videos, and more shared by the MN Governor’s Council on Developmental Disabilities from the CDC. Also available in Spanish

         Social story, poster, and video on masking

         Social story, poster, and video on social distancing

         Social story, poster, and video on handwashing

But as I’ve taken a step back from toolbox/research mode, I’ve landed on the most important thing for our family. One of the casualties of distance learning is the rupture of relationships, students with peers, students with teachers and staff but also families with their school community. So I am putting aside the endless checklists and spending my time reconnecting with my kid’s school – the people who will be caring for my child most of the day. People who only know him as a profile pic, a disembodied voice on a screen, and a dusty IEP. Those relationships need some targeted attention.

Here are my back to school to-dos:

  • Create and share a Get to Know Me one-pager
  • Set up a preview day so your child can go in to connect with their teacher(s). Many educators are open to these short relationship-building opportunities.
  • If possible attend all back-to-school events with your child and seek out the staff that will be working with them.
  • Find out who will be in their class and sit down with your child to see if there’s anyone they know. List three things that they know/remember about them.

 This will be the focus of many educators as they start this school year. Getting to know their students, bringing them back into the rhythm, the routine, but mostly the relationship of learning. It is through that connection that growth happens and authentic support is possible.

 

 

June 29, 2021
by Editorial Team
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Partnership Builds on Family Connections (and Fun!)

Last Saturday morning, a group of parents, kids, and staff mingled and played at the St. Louis Park (SLP) Central Community Center playground. SLP Early Childhood Special Education’s Amy Wink, and Communities Engaging Autism’s (CEA) Beth Dierker greeted the families—all of whom receive some kind of early intervention services through the school district. Preschoolers, along with some younger and older siblings, sought out favorite balls, trikes, bubble-blowers, and sandbox toys. On a table in the shade, popsicles, crackers, and waters offered refreshment. The gathering had the feel of a happy reunion.

These Saturday gatherings began as coffee and tea Google Meets during last winter’s COVID lockdowns. Participants would chat as their children played nearby. Eventually, little hands would grab for screens as kids vied for parents’ full attention. “The kiddos seemed to be in cahoots about ‘all done time’ at the 45-minute mark” Beth Dierker laughed. “We were doing what we could at the time, but felt so helpless to support isolated and stressed families.”

In April, when outdoor gatherings became possible, a playground meet-up routine took shape. More families came and kids, once again, took center stage for the fun. Thanks to this CEA-SLP partnership and a Family Connections Innovation Grant from the Minnesota Department of Human Services, Dierker and Wink are keeping this good thing going all summer. They’re hosting a few weeknight gatherings at St. David’s Center’s gorgeous, musical playground in Minnetonka. “We had 8 families come to our first night at St. David’s,” Amy Wink recalled. “Parents get lots of time to talk. We have extra adults come so that parents can step back. We’ve had a resource person come to share about opportunities like sensory supports for exploring local museums and what inclusion services look like in local parks programs. Moms and Dads seem filled up by the experience. That’s exactly what we’re going for.”

Parents’ conversations often bring up questions and concerns about raising kids who are showing signs of developmental delays. The topics that bubble up are familiar to Wink and Dierker, who work most closely with parents of kids with autism. So, they’ve begun to build “Amy’s Virtual Playground,” as a site that can hold distilled down “nuggets” of information for parents to access anytime. “We want to keep gatherings casual, but specific details or follow-up information is really needed. Hopefully, with consistent gatherings as touch points and a flexible, accessible ‘Amy’s Playground,’ we’ll strike the right mix of connection and support,” Wink explained.

May 27, 2021
by Beth
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Kids’ Book Reads: A monthly community sharing

April’s Autism Acceptance kids’ book read was a hit! Thank you for sharing your favorite kids’ books with us! From a sweet story of care between siblings to the summer joys of a neighborhood duo, our YouTube Kids’ Book Read Playlist is delightful and insightful.

Let’s keep this good thing growing together!

Each month, we’ll post favorite kids’ books read by members of our community (that’s YOU!). Picture or board books up to pre-teen chapter books. Themes might include acceptance, inclusion, learning from others, or learning to know ourselves. Have you read a story that makes you happy or hopeful? One that changed your thinking? Helps you grow your sense of community? Let’s hear it! 

This month’s book read video is Francisco the Angry Fugu by Emma Liam. Read by Simon. Enjoy!!

Submit a video of your favorite kids’ book. Record it and send it to us at info@cea4autism.org (a shareable link via Google Drive or Dropbox or other cloud storage often works best).

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May 19, 2021
by Beth
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Oxygen Mask Episode 20: LifeCourse Tools for Planning & Advocacy

Jamie O’Connor of Family Voices of Minnesota shares how envisioning a good life for her daughter helped Jamie move from overwhelm and “overtherapy-ing” to advocacy informed by her daughter’s interests and strengths. In our podcast conversation, we discuss two favorite LifeCourse tools (links below). Jamie’s stories and our reflections illustrate how simple tools and visuals can spur conversation and inspire courage and clarity.

Show Notes:

LifeCourse Tools from the University of Missouri

Fillable PDFs of the tools discussed: Integrated Support Star; Life Trajectory

Disability Hub MN has accessible information and links on Charting the LifeCourse.

New Date June 22, 2021 Family Voices of Minnesota webinar: Using the Trajectory Tool: Charting the LifeCourse

Favorite quote from Jamie on benefits of using planning tools centered on the disabled person: “It’s the difference between showing up and asking what’s available and showing up and saying these are my wants and needs. How can we work together to meet them?”

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