November 23, 2020
by Editorial Team
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Ale for Autism, 2020

Thank you for making Ale for Autism 2020 a success! October’s COVID-adapted experiment in giving raised nearly $2,000. We couldn’t have done it without our sponsoring breweries – Pryes Brewing and Lake Monster Brewing! These funds will help CEA grow our parent wellness and support opportunities as they go virtual, just like this year’s Ale for Autism.

We missed sharing space with you, but definitely felt the shared love and care that makes up our community.

November 23, 2020
by Editorial Team
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From Concern to Clarity: Insights for parents’ first steps on an autism journey

In a Holding Pattern with Hard Questions?

Many parents just like you have been told their child has autism spectrum disorder. Sometimes the words are not exactly “ASD.” They might be “global delay” or maybe “pervasive developmental disorder.” Different terms have been used over the years, and that makes this confusing. In your child’s early years, you may have heard descriptions like communication or social delays, low frustration tolerance, sensory processing issues, and inflexibility. Some of these may stand on their own, but when linked together, these descriptions can point to ASD. Parents can spend a lot of energy asking more questions, exploring various explanations, or diving into one single dimension of their child’s challenges, feeling unable to take in the whole picture. This flurry of worry can be exhausting and rarely gets you closer to meaningful learning. We hope this post provides some clarity for parents who may be in a holding pattern of concern and uncertainty.

What is ASD? 

Regardless of the terms used, we know that most parents have very little previous knowledge of autism. It is a complex and puzzling disorder that has been challenging to educators, doctors, and researchers. In the U.S. especially, autism has been stigmatized as a mysterious, scary “epidemic.” For decades, resources have been poured into finding out what causes autism, often at the expense of efforts to support people with autism to live a good life. We now know ASD is a neurodevelopmental disorder that is much more common than previously thought. Recent prevalence estimates among children are as high as 1 in 54. ASD occurs on a continuum from very mild to severe challenges. Science tells us that ASD starts in the developing brain before birth. There is nothing that parents did during pregnancy or in the child’s early life that caused autism. Since there is considerable variability among children with autism, it is hard for us to compare our child to other children with the same diagnosis. 

Why the Label?  

Many parents ask, “does my child really need a label?”  No, but a professional who has given your child a diagnosis or service identification sees developmental signs that suggest your child will benefit from educational or therapeutic services. Essentially, your child’s developmental path looks different than the path that his same-aged peers are walking. These differences lead to struggles and frustration for your child as she spends time with other children and adults. A label constitutes an access pass to supports and services that can help your child get his needs met, communicate, be better understood by others, and, in time, better understand and advocate for himself.  

After diagnosis, many parents tell us that they have had concerns about their child’s development for several months. They’d noticed that they were persistently struggling more than other parents with their child’s eating, sleeping and/or ability to transition from one activity to another. They noticed things their child did that were different than other children their age. Yet, some parents say they never noticed anything different about their child and really feel the diagnosis might be wrong.  There are lots of families that say several of their family members have traits that are noted as signs of autism spectrum disorder. They are just fine with that. They accept their child as he is.  Yet, a diagnosis comes with avenues to learn and to gain resources to help your child in community settings. It doesn’t have to be an either/or scenario (EITHER I accept my child as he is OR I focus in on his challenges). You can BOTH accept your child as his is AND learn more about him, getting the tools and guidance you all need to make life smoother now and in the future. 

How Do We Know?

There is no specific test for autism spectrum disorder. No specific blood test, no specific action, no defining physical trait. Determination of ASD is based on the child’s behavioral characteristics and developmental pattern. It takes time for patterns to emerge. You have to watch what the child does or does not do. This is tricky because children respond differently in various situations. Some parents watch their child in an evaluation and are upset that the evaluator does not get their child to show all he can do. The evaluator is assessing the child’s response outside of established routines without a parent who knows how to engage the child. Remember the diagnosis also takes into account information you provide regarding developmental history. You are an important source of information. 

Diagnosis or evaluation can be done by an individual or a team. The benefit of a team is that several different areas of expertise are brought into the evaluation. A diagnostic assessment can be done as early as 18 months, and there are a number of reliable diagnostic tools. Many children are not diagnosed until 4 or 5. No matter your child’s age, do not be concerned that it is too late for intervention and support. The word diagnosis applies when a determination of autism comes from a medical doctor like a pediatrician or a developmental specialist, psychologist or a neuropsychologist. Evaluation is the term used in education and where a team approach is most common (including a teacher, speech clinician, and occupational therapist). We have also heard about some parents who used Google to recognize their child’s autism and have their observations confirmed by professionals later. You also can get a second opinion. You might get a slightly different decision because of timing and clinical experience, but this does not mean that your child’s autism is more complex. It illustrates that ASD is complex and clinicians make a diagnosis based on what they observe and what the parent shares. More labels likely reflect more or different consultation and not necessarily that the child’s autism has changed. 

All diagnosis or evaluation criteria agree on the accepted definition of ASD in the Diagnostic and Statistical Manual of Mental Disorders of the American Psychiatric Association, Fifth Edition. For now, letfocus on the two characteristics defining an autism spectrum disorder. 

  1. Problems in social communication and social interaction. Examples you might see in a young child are difficulty in back and forth conversation, little interest in sharing interests or emotionslimited eye contact, little interest in imaginative play or other children.
  2. Restricted, repetitive patterns of behavior, interest, or activities in at least two instances like repetitive speech or motor movements, insistence on sameness, highly restricted interests, or hyper or hypo reactivity to sensory input.    

An easy way to see this in babies and toddlers is to look at the First Words Project from Florida State University.  Here you can screen your child, sign up for the Baby Navigator and see what autism looks like in toddlers. Some of the signs of autism in toddlers are “yes” to these questions: 

  1. Is it hard to get your baby to look at you? 
  2. Does your baby rarely respond to his/her name?
  3. Does your baby rarely share interest with you like pointing or showing?
  4. Does your baby rarely imitate actions like hugging a teddy bear or pretending to drink from a cup? 
  5. Does your baby get upset over unexpected changes? 
  6. Is your baby very sensitive to sounds, sights, and textures? 
  7. Does your baby have difficulty shifting attention? 

Process the Big Feelings

Many parents have shared their feelings on diagnosis. From fear and anger, to sadness, confusion, relief, or curiosity. It’s hard not to be daunted by the future when someone determines our child is not developing typically. Yet there is also relief to get some answers and pride at following up on your concerns. There may even be joy or surprise in seeing oneself or other relatives through the lens of autism. Write down or talk privately about all those feelings with a trusted person to regain your parental footing. This will take time and patience. Your child is the same child both before and after ASD is identified. You are the same parent who knows and loves him best. You can help support your child has he grows, particularly while his young brain is growing more and more neurons every day. You can enroll your child in your local school program or in therapy in our community. Yet the biggest impact you can have on your child’s development is what you do every day in your home. Your loving, responsive guidance cannot be overestimated. The ways you engage your child, nurture communication, teach and discipline, and have fun will shape your child’s life. We at CEA are here to offer you information and support through this journey. 

Author: Mary Powell, CEA Board President

cyberbullying

October 2, 2020
by Shannon
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Bullying Prevention Month

Bullying doesn’t confine itself to one month of the year, but having a month where we as a community look at it, and what we can do to combat it, is critical. At CEA we mark this month by sharing information and resources with our families because this is an issue that we deal with more often.

Now that our social and emotional lives have moved largely online, bullying looks different. But its impact remains the same. Some research shows that cyberbullying has even deeper impacts than bullying occurring offline. This type of bullying is pervasive, hard to track and invades our homes and other safe spaces for kids.

Many of our tools and resources do not fully address this new online life, but schools are a great resource for what to do about cyberbullying. And Pacer Center also has some great online resources.

Oxygen Mask Podcast Logo

October 1, 2020
by Beth
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Oxygen Mask Episode 14: A Parent Coach’s Insights for Families

We’re so glad to welcome Bonnie Bogen, Parent Coach and retired Autism Specialist, to the Oxygen Mask. Many families are all too familiar with the stresses weighing on and pulling us in many directions. Here, Bonnie suggests some concrete strategies. Perhaps most reassuring, however, is her wise guidance about expectations we set for ourselves and for our children. Thanks for listening!

Show Notes:

Check out a visual we made based on Bonnie’s ideas for helping parents and families focus their priorities.

Ale for Autism 2020

September 30, 2020
by Editorial Team
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Ale for Autism, Adapted for 2020

We look forward to seeing you every year for our annual fundraiser – Ale for Autism! And while this year looks a little different, we’re being flexible and creative about how we do community during a pandemic. So no big gathering, but lots of opportunities to connect, all month long.

In partnership with Pryes Brewing and Lake Monster Brewing. Communities Engaging Autism is celebrating through the entire month of October. 

Donate to CEA (October 1 – October 31) to get one free pint (dine-in) or crowler (to go). Patio dining is available at Pryes and Lake Monster (reservations required), so stay for a fun outing. Invite your friends and make your own Ale for Autism event. Be sure to share your Ale4Autism selfies, so we can all join in.

We are committed to building community and finding safe ways to come together. So look for pop-up events on the Pryes patio throughout the month. There you can join friends of CEA for a socially distanced locally brewed ale, great conversation, and the chance to win some prizes.

Support CEA and the work we do to fully engage families living with autism in their homes, schools, and communities.

Want to be a sponsor? Email us!

child hugging stuffed toy

September 22, 2020
by Chrissy
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Virtual Social Skills with Preschoolers: A teacher’s learning

Teach remotely? What does that even look like with preschoolers? How can I possibly meet the needs of my students and families remotely?  What do parents want? 

This rush of thoughts and questions left me overwhelmed and scattered. While I typically rise to a new challenge, it took me awhile to wrap my head around education’s quick transformation during a pandemic. But I slowly realized that this was an opportunity to work more closely with families and really empower them to be their child’s primary educator. I’m a firm believer that educators support students and families in their learning and most of the work is done at home. 

Reaching out, listening openly

Next, I called the experts—the caregivers. I reached out to a support group I have the privilege of convening. Bringing them together (virtually) was extremely helpful. We laughed, cried, panicked and, most importantly, breathed together!  Caregivers expressed concerns with distance learning, however, their biggest worry was their children’s lack of social interactions during this pandemic. Identifying one specific need helped me focus on next steps.  

Creating virtual social opportunities

I decided to start a virtual social skills group to help connect families and students with the focus on social skills. Teaching social skills? No problem! Teaching social skills virtually? This was NOT in my wheelhouse, but I was asking families to do things they had never done so I needed to model learning something new! The social skills groups were not without flaws and challenges. Families, staff, and I learned quickly that we couldn’t just jump into the content. We needed to set the groundwork first. Here are some foundational steps and learnings:

  • Create clear expectations and guidelines for caregivers so they know what to expect and what was expected of them. This includes tips on how to support their child during these virtual lessons. 
  • Be realistic about session length based on kids’ abilities and attention spans. We want to be successful and to always end on a good note. Our spring sessions ranged from 10-20 minutes based on activities and behavior. 
  • Create a lesson, with visual supports, to teach students how to participate in an online group. These expectations include sitting down, looking at the screen, listening, raising your hand if you want to talk and having a calm body.  
  • Follow a consistent schedule, changing the activities as students’ needs change. Our schedule always included a greeting, an activity, a short lesson and a song.  Activities help practice turn-taking and included a simple game or sharing/showing items. Again, visuals supported each lesson. 

Just like in the classroom, our time together didn’t always go as planned. But we adults learned something each lesson and adjusted so that students could be successful. We faced challenges with virtual learning, including anxiety on screens, difficulty engaging students, distractions and learning a new routine. Change is hard! I am so very proud of my students and the caregivers who are working so hard to support their learning during this pandemic!   

As we start another year of distance learning I know that, together, we can do hard things and we can grow in ways we never imagined.  This reality is not what I signed up for as an educator. Adapting alongside families has been an unexpected gift that has made me a better educator. This experience has also reminded me who the real heroes are—the caregivers! 

Author: Chrissy Christensen, Early Childhood Education Teacher 

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.

Oxygen Mask Podcast Logo

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
0 comments

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
1 Comment

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.

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.