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. 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 or two.

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.

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?”

aqua background with white text reading Oxygen Mask: A podcast for parents of kids on the autism spectrum

May 10, 2021
by Beth
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Oxygen Mask Episode 19: Neurodiversity with Milena and Jules, Part 2

We entered April, autism acceptance month, with Milena and Jules. As these two neurodiverse mothers raise autistic children, they are living out and advocating for autism acceptance in their families and communities. Our conversation began with the founding and growth of MN Autistics and Allies and meandered through autistic community, masking, splinter skills, language, and how talking about autism with kids can help them advocate for themselves. This conversation shifted our thinking and we hope it does the same for you!

Show Notes: 

MN Autistics and Allies is the Facebook group that Milena and Jules co-administer.
– Writing from Jules (@AutisticTyping):
– Milena is a Pacer Parent Advocate and member of the MN Department of Education’s Special Education Advisory Panel.
– Jules is a Parent Advocate with the Multicultural Autism Action Network and current University of Minnesota LEND fellow.

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.

April 25, 2021
by Shannon
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Let’s Start Seeing Autism: Autism Acceptance

Note from the author: I wrote this before the neurodiversity and autism acceptance perspective was part of our community discussions. While I didn’t have the terminology from autistic advocates, I felt this lack keenly in the wider world. It speaks to that issue from a parent perspective. We all want our loved ones to be seen for who they are, and for all autistics to be celebrated for what they bring to the spaces they inhabit. And that can’t be done if we aren’t, fundamentally, seeing autism.

No matter where I am or who says it I freeze up when I hear, “He doesn’t look autistic.” I smile and fix my gaze, my mind racing through possible responses, but in the end allowing awkwardness to grow. There’s back tracking and qualifying on the speaker’s part which thankfully opens up a window through which we have a conversation. One that ends well, but leaves me wishing I could have said more or better, or simply done this whole advocacy part of parenting with autism differently.

In my quest to uncover why I have this response, I talked with other autism parents. I’ve learned I’m not the only one that hears the doesn’t-look-autistic comment (or its cousin, “He has autism? I never would have known”), nor am I the only one who has issues with it.

So why the issues? Are we being oversensitive? After all, many say it’s meant as a compliment and respond accordingly. And I get that. I really do. I wish I had the grace to accept it as one. But it doesn’t inspire gratitude in me, so “Thank you” just won’t come out. To me, if it’s a compliment, it’s kind of a backhanded one. A true compliment would be, “He looks like he’s doing great.” No, this is a loaded comment.

This comment essentially negates all my son’s hard work and strips him of his finest qualities – his strength, his determination and his heroic ability to be present despite constant struggles. Plus it drags behind it the subtle accusation of a “wrong” diagnosis. And that accusation is a bit insulting, not just to my son, but to me as well. As if, somehow, I got this all wrong.

There’s a lot of baggage to unpack behind this type of comment. As one parent told me, her immediate internal reaction is, “What does that even mean?!” We feel unable to respond to “He doesn’t look autistic,” because we struggle to understand the intent behind it. Do we launch into a monologue about stereotypes, defend the diagnosis, feel proud, or snap a quick, “What does autism look like?” It’s a lot to sort through.

But, mostly my reaction is an emotional one, hidden behind those more intellectual quandries. I freeze up because I’m taken right back to the days when I was overwhelmed by worry. The days when my concerns were dismissed with a glib, “Let’s wait and see,” or, “He’s fine” and, “He’s just smart, don’t worry.” Those days when my stomach would flip, my heart race and my hands shake when I saw my son struggle mightily to do things other children did with ease. Those days before the diagnosis when I was utterly alone in my fear and worry. I supposedly had nothing to worry about, but there I sat, drowning in it.

And this goes to the core of what autism awareness is all about. That early diagnosis which is so critical to life-long success. It is the autism that goes unseen in doctor’s offices and preschools, on playgrounds and in homes across the country. We’re not seeing it because we can’t look beyond the myth of what “disabled” looks like.

I don’t want people to look at my son and see only a disability. Reduce him to a label that acts as a screen through which they cannot experience who he really is. Yet, they cannot really know him without seeing autism too. It’s how his brain works and, well, that’s pretty huge. This inability to see him as a whole person, one that includes autism, shows how important awareness campaigns are.

Part of Autism Awareness month is doing away with stereotypes and opening up our eyes to seeing autism when it’s right in front of us. It’s about allowing individuals who identify as autistic to embrace that label. For me, it is not a compliment to be told that my son doesn’t look autistic. He does look autistic because he’s part of the mosaic that makes up our collective picture of autism. To deny that is to reduce the diagnosis to a caricature. And that reduction has consequences that are far-reaching.

I don’t always feel like educating everyone that says, ”He doesn’t look autistic.” So sometimes I don’t put on that advocate hat. I just smile, let the awkwardness grow and change the subject. I hope that the speaker lets that awkwardness clear their vision so they can really see my son. Because if they do, they’ll see what autism looks like. It’s bright, it’s charming, it’s puzzling, and it works incredibly hard to be there, present, before them. It’s there, waiting to be seen.

aqua background with white text reading Oxygen Mask: A podcast for parents of kids on the autism spectrum

April 19, 2021
by Beth
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Oxygen Mask Episode 18: Neurodiversity with Milena and Jules, Part 1

This April, autism acceptance month, we have insightful conversations with Milena Bates and Jules Edwards about neurodiversity. These two mothers recognized that they themselves are neurodiverse as they sought diagnoses and services for their autistic children. This episode will bring you joy, make you think, and provide a new lens on autism. Milena and Jules share their personal and parenting journeys and shift the autism narrative toward acceptance.

Show Notes: 

MN Autistics and Allies is the Facebook group that Milena and Jules co-administer.
– Writing from Jules (@AutisticTyping):
– Milena is a Pacer Parent Advocate and member of the MN Department of Education’s Special Education Advisory Panel.
– Jules is a Parent Advocate with the Multicultural Autism Action Network and current University of Minnesota LEND fellow.

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.

Your contributions help Communities Engaging Autism as we adapt to these trying times – innovating with our programming and content to reach parents, families and educators where they are.