August 31, 2020
by Editorial Team
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Seeing Big Behaviors? Take a closer look at autism.

Is your child getting easily frustrated or upset? Have there been days with outbursts, meltdowns, screaming, or crying? Are they even more frequent during this time of staying at home? Why does this happen?  

As parents, we so desperately want to restore peace in our homes that we quickly reach for strategies. Some tools or supports help for a time and they change as the child grows or as the environment changes. During the COVID-19 pandemic, many services or therapies are in flux or delivered virtually. This is distressing for all of us.  

I want to take a moment to draw our attention back from all that’s happening “out there” and the various strategies we may reach for. Let’s take a closer look at the definition of Autism Spectrum Disorder (ASD). Considering how children with ASD might experience the world helps get at the “why” behind some behaviors. It may also reduce your frustration and confusion, building empathy and understanding. 

Autism Defined

ASD is defined as a disorder of communication used for social interaction and a disorder of restricted patterns of behavior such as sensory behaviors or adherence to routines. Children who have ASD show us that they are having trouble with communication and understanding what seems so easy for children with typical communication skills. Children with typical communication skills learn how to interact with family members through facial expressions, gestures and routines even before they fully understand the words people are saying to them. Children with ASD often miss these cues that guide interactions. They may have sensory sensitivities that make it hard to be relaxed and fully attentive to the cues their parents are providing. They often focus deeply on what interests them and what makes sense to them (such as lining up favorite books or watching the motion of toy train wheels). 

Unpacking the Definition

Kids with ASD are doing what works for them. When they are upset, they are letting us know that they don’t understand what is going on. So what do we know about Autism Spectrum Disorder that gives us clues about our children’s behaviors? 

  1. Children with ASD often have difficulty understanding language. They may interpret language literally, not understanding variations of meaning and context. “You can’t go to the park!” may mean to the child that he can never go to the park, instead of not right now because it is raining. Many children can say words but understand them only within a specific routine. They may not fully understand the meanings of words, requiring parents to use short sentences with consistent word choice. In addition, the child with ASD may have difficulty understanding changes in inflection and voice tone. Language is very fluid and changing. This makes it hard to understand language and use it in conversation, especially if you are not getting information from facial expressions.
  1. Children with ASD often understand family life in terms of routines. They become upset when the routines change because events are not what they expected. This is why weekday routines can run smoothly, but Saturday, with less structure, can make the child anxious. This time of staying at home might really be confusing. Routines like bedtime routines can be very useful to gain cooperation as you guide your child through taking a bath, brushing teeth and story time. Less structured days with errands and going out to eat can be stressful for a child to understand. He may need support and preparation to accept the routine changes. 
  1. Children with ASD may have low frustration tolerance. Many children with ASD have difficulty staying calm enough to think rationally when they are upset. The more someone talks – especially in a loud voice – the harder it is to process the information. All children get upset when they can’t do something like swinging on monkey bars, but the child with ASD may get more and more upset without the thoughtful reflection that he will grow and master the task over time. Anxiety heightens this difficulty.
  1. Children with ASD often have sensory sensitivities that interfere with attending to adult requests. Books are filled with stories from people with ASD describing how they feel overwhelmed by physical contact, noises, smells, and some children do not like being touched; others are frightened by common noises like airplanes, vacuum cleaners, and lawn mowers. Many children have trouble following simple directions in stores and malls because of sensory overload. 
  1. Children with ASD often do not understand facial expressions or tone of voice. There is considerable research in ASD on theory of mind that demonstrates the difficulty understanding other people’s perspective. By the time a child is five, most children know that people have varying perspectives. We adjust our actions based on the reactions we expect from people around us. This is not so easy for the child with ASD. Children with ASD may not understand that parents with red faces and stern voices are expressing anger. They find the interaction surprising, interesting, or even amusing. 
  1. Children with ASD are often black and white thinkers. They may be quite rigid in what they expect to happen. The child who understands that the arrival of grandmother means his parents are leaving for the evening may get very upset when dear grandma just comes for a social visit. Rigid thinking can also be seen in interests. Parents talk about intense interests in Thomas the Train, washing machines, sport scores, or tornados. Intense interests can interfere with following simple directives that seem reasonable to parents.

This list is not exhaustive, but it illustrates that social communication is challenging. Your child is doing the best he can with the way he interprets information. He is not testing his parents. He is not in a battle of wills to always get his way. The child is doing what works for him in the family situation. If the child’s behavior is not working for you, the parent, or in the family, it shows there is a problem with communication.  

So, what can we do? Our next post will take up this question in depth. For now, really take some time to take a closer look, noticing when your child struggles most and when he is content or engaged. Gather insight into his experience. This foundational information can strengthen your relationship and inform how you support your child’s understanding. 

Thank you to Mary Powell for this insightful contribution.

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August 30, 2020
by Beth
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Oxygen Mask Episode 013: We’re in the same storm: A COVID chat

Welcome to back-to-school: Pandemic edition, featuring parents jostled and swirling in a sea of uncertainty! In this episode, Beth and Tera check in on stress symptoms and coping strategies. What helps you feel safe and tethered down in these stormy times? Hear the hosts’ thoughts on what’s been harder and what’s been easier about a socially distant summer. Tera and Beth remind themselves and their listeners to go back to the basics of supporting ourselves and our family members, especially those on the spectrum. Friends, it bears repeating: Please secure your own oxygen mask before helping others.

 

Show Notes: 

Yoga with Adriene: https://www.youtube.com/user/yogawithadriene

Favorite timer (similar to those often used at school): Time Timer

Article from disability scoop identifying pandemic complications and stressors for those parenting kids with special needs: https://www.disabilityscoop.com/2020/08/19/pandemic-pushes-parents-of-kids-with-special-needs-to-breaking-point/28760/

July 1, 2020
by Shannon
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A Virtual Summer

I started a new ritual in March of this year. Every Sunday, I delete the events, appointments, and activities on our calendar; as yet again in-person classes, workshops, and enrichment options for my kids get canceled. This delete-as-we-go ritual became particularly hard as we moved into summer. Summer camp? Gone. Trips? Canceled. Tennis, swimming lessons, music, and Ultimate Frisbee? Not happening.

As I watch the summer stretch ahead of us unfilled and endless, I have discovered a few options that just may get us through the next few months.

  • Wilderness Inquiry: a local nonprofit that makes outdoor adventures accessible to all abilities. We have gone on three of their family adventures (Voyageurs, Yellowstone, and Glacier National Parks). They truly engage kids, regardless of their age, neuro makeup, or physical ability. So when I saw this virtual summer camp offering in partnership with National Park Service, I signed my kid up immediately.
  • National Parks: Have I mentioned that I’ve got a thing for our National Parks? Our local one – Mississippi River National Park – has been hosting twice-weekly Coffee with a Ranger on Facebook. It’s a great diversion and inspired us to go explore those parks that are right here in our own backyard. Search for your local National Park. I’m sure others are doing virtual Ranger Talks, too.
  • Bell Museum: Through their website, they are hosting a series of virtual events. Our favorites so far were Micrometeorite Hunter and Minnesota Night Skies Live.
  • Varsity Tutors: A terrific menu of week-long summer camps for any interest and age level. Most are free but some have a small fee. Right now, one of my kids is enjoying the Brain Body Balance class. We are all learning some new ways to move our bodies.

Nothing replaces sharing space with one another or going off to summer camp, but the one good thing to come out of this virtual summer? I spend a lot less time in my car. Time that is better spent in my garden.

June 23, 2020
by Shannon
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Lovin’ Summer? How to prepare for all the fun

Monday was the first day of summer “vacation” in our home. While I’d spent hours upon hours many months ago designing the perfect schedule for our family – robust with inspirational and varied opportunities for my kids – I neglected something, that for my eldest son, is crucial. I forgot to prepare him.

He, like most kids with autism, struggles with transitions. Big or small, almost all take a little extra support from his adult “helpers.” Usually, I do this without thinking. And I guess that’s why I dropped the ball this time; I just wasn’t thinking.

In past summers I have crafted detailed weekly visual schedules, complete with pictures and developing patterns within the schedules since he’s a pattern thinker. As he’s grown and his reading skills emerged, those schedules morphed into more traditional color-coded weekly calendars, but I still create patterns for him. Together we go over these schedules, have lots of talks and, if necessary, whip up a quick Social Story to prepare him for a new camp or class. But this year, beyond updating our iCalendars in the iCloud, I did nothing.

It wasn’t until 11:30 at night that I realized my mistake. I heard the thump of my son’s footsteps on the stairs as he came down. I was frustrated since his bedtime was hours before. He stood before me noticeably anxious. While the words, “Go back to bed,” were forming on my lips, “What are we doing tomorrow?” erupted from my son.

And the light bulb went on. While he’d made it through the day with only mild grumbling and small refusals, my son’s anxiety had been building all day long. Having no idea what the next hour or day held for him, he was unable to relax, couldn’t sleep or enjoy himself.

So we sat down and went through the online calendar together, which is, luckily, color-coded. And I spent my remaining waking hours developing our visual schedules for the summer. He’s referred to his four times today. There has been no grumbling and no refusals. And I’m pretty sure he’ll be able to sleep tonight.

I’m reminded of just how much he relies on these supports but also encouraged to see how far he’s come; from tantrums to grumbles and from meltdowns to negotiations. But best of all is his self-awareness which allows him to ask for what he needs. So that even if I drop the ball, he’ll pick it up and assist.

Things to remember as you transition into summer

  • Use what motivates your child – i.e. color, shapes, characters
  • Take time to create visuals that are meaningful to your child. See our earlier post on Visual Schedules
  • Be aware of your child’s processing ability when creating visual schedules. They may need daily ones broken into hour or half-hour increments. Use pictures if they are not yet reading. Or use both for emerging readers.
  • Display schedules in a space easily accessed by your child.
  • Social Stories are great tools for preparing children for new classes, camps or programs. See our post on Social Stories.
  • Find ways to keep important routines – bedtime, favorite books, breakfast with grandma – so new things are easier to handle.
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June 18, 2020
by Beth
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Podcast Summer Pause & Fall Invitation

Take a quick listen to our thoughts heading into our summer pause. We would love to bring more voices into the mix on the Oxygen Podcast when we reboot in the fall. Let us know if you or someone you know would like bring a new lens or important information to the conversation! Be well. And breathe.

With gratitude,

Tera & Beth

May 7, 2020
by Beth
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Roll With It

We are in unprecedented times with this distance learning while [circle all that apply: working; cooking; caring for young, old and in-between; caring for oneself; struggling emotionally; teaching multiple kids multiple ways; struggling financially; grocery shopping; cleaning; disinfecting knobs and surfaces; other; etc.; and so on]. It is straining and uncertain for us and for our kids. This makes focusing, staying calm, getting our needs met, and thinking, remembering and learning more difficult.

Unprecedented (adj.): Never done or known before (Oxford Dictionary).

It makes sense to look at what we have done or do know to guide our steps. When it comes to distance learning, this may mean that school-at-home resembles school (recall early COVID-19 era pictures of smiling children at tabletops with pencils, notebooks, and iPads). We are all improvising. Let’s borrow what works from school and roll with all the rest. Does a certain schedule, familiar song, favorite subject, or silly activity from school make your child smile? Use it as a touch point in your day. Then, roll with the people, the feelings, the spaces, the opportunities, and challenges that present themselves each day. It’s all we can do.

I’ll describe what “rolling with it” looks like in our house. Here’s a little bit of background: I have two mid-elementary aged kids. I’ve been homeschooling my son who is on the autism spectrum and have had a year to find what works for us. We do schoolwork side-by-side. My daughter attends public (now virtual) school and prefers to work independently, pulling me in for occasional spelling help or technical support. I have a partner working full time from home and I am working part-time from home. We are still finding our way. But here’s a zoomed-in picture of what’s working when we roll with it.

Blankets here, blankets there

Possum reading in a hammock for extra sensory input.

We are all in comfort-seeking mode. Blankets are scattered around the living room. Both kids cozy up in a corner of the couch, pulling ample, white “cloud blankets” into their laps. A book or iPad resting on the billowing cloud is the closest thing we have gotten to a work surface lately. For my son who has been anxious these past weeks, a simple task or mistake can send him writhing to the floor in flight mode. I roll with him there, being quiet but present. A blanket “burrito” of deep, reassuring pressure also helps. We may finish the work laying on our stomachs, with him pulling the blanket tightly around his face to peer out–calm but wary. Outside, we’ve recently begun using a hammock for extra squeeze. My daughter likes to relax and draw there. My son wraps himself in hammock fabric, suspending himself face down in a possum-like position where he reads.

Routine: Just the skeleton

This newfound routine has become a skeleton for our days: 

  • Breakfast at 9:00; lunch at 1:00; dinner at 6:00
  • Academics mostly in the morning
  • One mid-morning break outdoors and another longer time outside in the afternoon
  • Your choice screen time in the afternoon
  • One job before screen time (dishwasher empty or dog walk)
  • Family dinner clean-up
  • Read-aloud time around 8:15
  • Bed by 9

We have let go of a lot. Daytime clothes are optional. Showers are less frequent. With all the time at home, we’re actually picking up some life skills (i.e. folding laundry, picking up, preparing meals). The kids need lots of support and consistency for this learning too.

We do small bits of academic work that total about 90 minutes or two hours each day. We break our time into pomodoros–25-minute units of time followed by five-minute breaks. According to the pomodoro technique, people learn best in small periods of focused time separated by short breaks. We limit screen time to this 25-minute block as well, using a timer to keep us accountable. The kids seem to appreciate the predictability, even though they still need extra “help” to end screen time. When the timer dings during academic time, we take a break whether we’re done with a task or not. Resist the urge to add one more thing. A moving target can be frustrating for kids. Breaks are meant to be proactive instead of reactive, making the transition back to focus time less difficult. Also, take a longer, more restorative break after four pomodoros of focused time. 

Extra Support, Flexible Options

We add extra support to the routine as we need to. For example, ping-pong-like attention and movement have kept my son from staying at the table long enough to fill up at mealtimes. We’ve found that a good audio book keeps his mind busy and his body still (or just squirming on his wiggle seat) for a little longer and it entertains us all. I suppose the audio book may feel more predictable and less socially demanding than dinnertime conversation. 

During academic time, casually offering the kids simple choices helps them enter in:

  • Do you want to grab a mint or a chewy snack to help you focus? Can I have one too? 
  • OK, do you want to do reading in your room or on the couch?
  • Do you want to read the questions or scribe*?

*I often write, or scribe, or my son. I’ll occasionally nudge the pencil in his direction though. If he’s thinking hard about something, I gently set the pencil in the notebook in front of him in case he wants to get his thoughts out. I sometimes deliberately misspell a word and he’ll grab the pencil to take matters into his own hands. Or, since I know he likes to feel helpful, I’ll tell him, “I didn’t learn in that way. Can you show me what you did?” 

Bucket Fillers

The idea of “filling your bucket” means figuring out what makes you feel good or what restores you and gives you rest and joy. The bucket analogy comes from a favorite book, Have you Filled a Bucket Today? I encourage all of us to recognize what our bucket-fillers so we can fill up when we’re feeling depleted. My daughter draws by herself in her room or goes on a bike ride with a neighbor. My son curls up with a book or swings outside. I morning yoga, gardening, and a daily body scan meditation keep me grounded. My partner organizes and tinkers in the garage to unwind.

Full Disclosure

This picture isn’t complete. In zooming in on the details, I’ve excluded a lot of factors listed at the start of this article. Life is messy right now and our minds are scattered. There isn’t enough time or energy. Multitasking school and work is an illusion. I have learned this, yet continue trying and experiencing the fallout of loud voices, big emotions, and dis-regulated bodies. Then I take deep breaths and return to the moment I’m in and the people I’m with. We are doing the best we can and we are rolling with it. 

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May 1, 2020
by Beth
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Oxygen Mask Episode 12: Noticing, nurturing strengths

Episode 12 comes to you during a challenging time for all of us in this COVID-19 pandemic. Tera and Beth acknowledge the brain fog, fatigue, intensity, and interruptions that are weighing on us all. We have slowed down and are trying, daily, to be more flexible and gentle with ourselves and our families. That’s why our April podcast is finally showing up in May! Please extend these friendly attitudes to yourself as well. When you have found some rest and space, we hope that Episode 12 plants a seed of gratitude and appreciation as we talk about nurturing a strengths-based lens with our kids and our whole families.

Show Notes:

Book: Just Give Him the Whale! by Paula Kluth and Patrick Schwarz

April 1, 2020
by Editorial Team
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April: Join Us for Autism Awareness and Acceptance Month

Today we step into April, Autism Awareness and Acceptance Month. This is certainly not the way many of us pictured it, but humor and creativity can help us adapt to this COVID-19 reality. In this spirit, CEA is celebrating in a few ways, and we hope you’ll join us.  

Explore these flexible opportunities! As always, please share what you find insightful and delightful.

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March 28, 2020
by Beth
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Oxygen Mask Episode 011: Welcoming guests, unpacking mindfulness

In Episode 11, we warmly welcome our first guests, Kate Biederman and Jen Reiter, who have deeply shaped Communities Engaging Autism’s mindfulness course*. In this rich conversation, Beth, Jen, Kate and Tera unpack what mindfulness really is and the growth they’ve seen in themselves and others through practice.

*Our Spring 2020 course has been cancelled due to the COVID-19 pandemic. To stay informed of future offerings, subscribe to the podcast or visit our website to subscribe to CEA’s newsletter.

Key quote: “People don’t have less stress in their life…they’re just more equipped and resourced to handle what comes.” – Kate Biederman

Key points:

  • Defining mindfulness; noticing is powerful
  • Anchoring your attention in your body; being present in the moment
  • Consistency is key in growing self-awareness; do simple things, daily
  • Practicing in community with other parents is powerful

Show notes: 

LEND Fellowship

Communities Engaging Autism’s Mindfulness-Based Stress Reduction Course for Parents of Kids with Special Needs

Jon Kabat-Zinn

Sebastian Gendry

Book: How to Relax by Thich Nhat Hanh

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February 3, 2020
by Beth
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Oxygen Mask Episode 010: Appreciate the good

Join us in offering yourself a little love this February! In Episode 10, Tera and Beth recall positive, encouraging words and actions from people who have come alongside us and our families. These are beautiful moments that let us know we are seen and that our children are known and valued. Draw from our stories to recognize your own. Hold them up, have a good look at them, and thread them into a story of hope and encouragement. Take a listen and let this episode awaken or enliven your own gratitude.

Take-aways from this episode are really interwoven with Communities Engaging Autism‘s 7-week course, Mindfulness-Based Stress Reduction for Parents of Kids with Special Needs. There, we talk about the brain’s negativity bias (as Rick Hanson puts it, the good slips off as if on Teflon and the bad sticks like Velcro). It takes intention to balance out our brain’s defaults. The seeds that you water are the ones that grow; the muscles that you work are the ones that get stronger. Another offering begins April 7, 2020. Click here for details.

Each day this month, jot down a few specific, positive things people have said to you, ways others’ actions have encouraged you, or just positive, peaceful, or joyful moments in your day. Oh, and there’s an app for that. Three Good Things is a gratitude practice builder that’s gentle and simple.

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.