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 [email protected] (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.

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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.
baby looking up with fingers in mouth

March 26, 2021
by Editorial Team
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Autism and Attention: Making Connections

You want to learn how you can help you child. It helps to know about the basics of ASD. You can connect this basic information to the small, daily actions you can take to help your child learn and grow.

There is now wide agreement that ASD is a neurodevelopmental disorder. It affects 1 in 54 kids. This understanding replaces past views of ASD as a rare disorder mainly of behavior or speech. “Neurodevelopmental” means ASD is based on the brain’s neurology, or brain wiring. Of course, brain wiring influences learning, functioning, and behavior. Neurology changes dramatically as kids develop, which makes ASD seem like a moving target as a child grows.

Observe with Curiosity

In considering a child’s behavior, then, parents and teachers can keep in mind:

  1. A child’s behavior is shaped by their brain wiring
  2. A child’s behavior can tell us something about him or her

The key is to be curious about what the child is communicating through his actions. Even though the child may not be purposefully communicating, his behavior provides insights. This shift in your own understanding and interpretation is very important. It shapes how you engage with a child.

Key Brain Wiring Differences

Children with ASD have challenges in processing social and emotional information. Most typically developing newborns are drawn to look at faces, which give them information about what people think and like and what is pleasant or unpleasant. Many babies who have ASD do not seem to pay attention to their mother or father looking at them. They may not attend to eyes or enjoy emotional displays like a smile or wide-eyed surprise. The baby may not be interpreting or “reading” facial expressions. It could also be that he is not emotionally or physically calm enough to pay attention to these emotional displays. Sometimes children with ASD focus more on parents’ mouths than their expressive eyes. Not attending to other’s faces is the most consistent discriminating factor for a diagnosis of ASD at one year.

Does this really have an impact on our children’s learning? Yes! Because they attend less to faces, children with autism do not easily follow the gaze of another person to join into what is happening around them. They tend to miss the meaning in facial expressions. Altogether, they miss opportunities to share experiences with others via eye contact (this is called shared attention). When we share attention with another person, we are communicating with them. We look at what interests them. We smile at what pleases them. We are afraid of whatever they show scares them. This happens long before babies have actually the words for conversation. With little or no information from the face, the autistic child’s environment can feel more confusing, surprising, and distressing than it does for a neurotypical child.

Drawing Attention

Research studies on face recognition and ASD give us clues on how to engage our children. We need to draw their attention to our faces and our eyes. We can encourage them to “check in with me!” We can exaggerate our expressions to pique interest.  We may hold favorite toys or snacks near our faces to draw attention there. We can praise them for meeting our eyes. After all, we look at what we are thinking about, so the more our children are attending to others’ faces, the more likely they are to make social connections.

We can do much to help our children grow and learn. Through practice noticing faces and getting even partial information from facial expressions, children can grow their brain wiring for attending to this information. This provides a better understanding of social contexts. However, it’s also important to acknowledge that this joint attention can be overwhelming or intense for a child who isn’t wired for it, so a sprinkling of opportunities for practice throughout the day may help keep the child feeling emotionally regulated and calm.

Authors: Mary Powell, CEA Board President and Beth Dierker, CEA Executive Director.

For more information about autism, read Mary’s earlier post, From Concern to Clarity: Insights for parents’ first steps on an autism journey

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March 22, 2021
by Beth
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Oxygen Mask Episode 17: Dads of Kids with Special Needs

In this episode, we hear from two men who’ve lead a support group for dads of kids with special needs for over 15 years. Impacted by one father’s isolation and struggle as he processed his child’s diagnosis, Don Nikkola, MSW, knew this father was not  alone. He partnered with Steve Roeklein, LCSW, to address a big gap in peer support for men. Steven later summarized their approach as follows: validate [what men share], normalize [men’s experience/”you’re not alone”], empower [men to engage and grow]. Hear how this group of fathers helps each other navigate their unique fatherhood journeys.

Show Notes: 

Learn more about Twin Cities Dads (Helping fathers help their special kids) at https://tcdads.org/

Note: Don and Steve expressed appreciation for Arc Minnesota’s past sponsorship of their group.

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.
Kluth reading "Pedro's Whale"

January 31, 2021
by Shannon
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“Just Give Him the Whale!” Workshop

Educators, parents, and professionals were inspired and energized by our Jan. 25th workshop with Paula Kluth. Using her book – “Just Give Him the Whale!” – as a jumping-off point, we discussed how fascinations are a powerful tool for engaging learners on the autism spectrum. Of particular focus was using these fascinations to build bridges instead of dangling carrots to lead into learning.

Often we (parents and educators) dangle a student’s special interest as a reward for compliance. For example, “after finishing your math homework, you can do this map puzzle.” Instead, we can use maps as a bridge to learning math with a few modifications and some creativity. Once we shift our mindset, a whole world of possibilities for engaged learning opens up. And Kluth guided us into shifting that mindset and how some of those possibilities manifest in real life. She also shared the deep impact it has on our kids across learning domains (see Impacts of Special Interest Areas slide below). Kluth encouraged using a strengths-based curriculum map (see “Examples…” slide below) for integrating special interests into learning.

Fascinations are also powerful tools for calming and establishing, maintaining, or deepening relationships. This is even more essential as learning continues in the virtual classroom. Kluth shared ways that deep interests become vehicles for all students to connect with their teachers and their classmates. One class encourages students to change their screen name to their favorite cellphone, which is a special interest of one child with autism. This engaged the student in their virtual classroom, fostered connections, and has inspired the class to highlight every student’s special interest in subsequent days. This snowballing effect increased social-emotional supports for all students.

And finally, we learned about purposeful fidgets. These are tangible items that students have at home to keep them anchored and engaged in the online classroom. Using fascinations makes these powerful focus tools while also guiding the student toward completion of an academic or IEP goal. Examples include 1) letting a student assemble a puzzle of the solar system while listening to a group meeting or lecture. Purchasing blank puzzles and drawing the content on (i.e. parts of a cell) is a cheap and easy approach 2) giving students of all ages coloring sheets related to the academic goals 3) giving a student fascinated with calendars a three-dimensional calendar to assemble or fidget with during a lesson.

Learn more about how fascinations and following them leads to social and academic success for students on the autism spectrum in Kluth’s book, “Just Give Him the Whale!” You can purchase one of our remaining copies here.

This workshop was made possible by a Disability Services Innovation Grant through the MN Department of Human Services.

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January 4, 2021
by Beth
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Oxygen Mask Episode 16: Guest Delia Samuel, Part 2

We dive deep with Delia Samuel in this second part of our conversation. She reflects on discrimination, isolation and her commitment to build understanding of autism. Delia shares more about what has sustained her in extraordinarily difficult times. Beth, Tera, and Delia recognize how we parents grow to become the best-suited people to parent our autistic children.

Show Notes:

“The But God Project” features Delia’s faith story.

Delia is a co-founder and board member with the Multicultural Autism Action Network (MAAN). On Facebook: https://www.facebook.com/groups/MAANMN

Article about Dr. Samuel’s work in St. Lucia

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

December 31, 2020
by Beth
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Oxygen Mask Episode 15: Guest Delia Samuel, Part 1

Listen in to our conversation with Dr. Delia Samuel for encouragement and rich perspective. By openly sharing about her own experience parenting two autistic boys, Delia’s found that she can help parents face stigma and feel seen and supported.

Show Notes:

Delia is a co-founder and board member with the Multicultural Autism Action Network (MAAN). On Facebook: https://www.facebook.com/groups/MAANMN

Article about Dr. Samuel’s work in St. Lucia

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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