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.
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.
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.
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.
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?”
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.
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.
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.
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.
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
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
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.
We hope you’ll take a moment amidst the holiday flurry to breathe, listen, and be encouraged. In Episode 9, we acknowledge the many ways that family gatherings are a lot for us and our kids and we talk through ways we can navigate:
Expectations! Ours own, those of others, those spoken, those unspoken, and those we imagine
Boundaries that are healthy for us and our children; respecting how your child copes
Identifying the most challenging activities and/or those with the most set expectations (i.e. large sit down dinners) and “bookending” that event with activities that are restorative for your child and meet his/her needs for down time or sensory input
Drawing from mindfulness principles, we challenge you to notice the stories you tell yourself as you engage with your larger family and friend circles. If a story of “not enough” with a side of shame or guilt is present, we encourage you to nudge your story toward self-acceptance and acceptance and celebration of the family you have formed. Remember, you’re not doing this alone—Tera, Beth, and many other special needs parents are right there with you. Best wishes for a peaceful time of togetherness and much rest afterwards!
Beth mentioned Communities Engaging Autism’s course: Mindfulness-Based Stress Reduction for Parents of Kids with Special Needs. Here’s information about our fall 2019 session. A late spring offering of the course will be announced soon. Scholarships available.
The Oxygen Mask is back! Have you experienced a few curveballs in life when unexpected circumstances challenge you, forcing you to focus on one step at a time? This is often the time when routines or expectations that ground us slip away and we find ourselves more than maxed out. In Episode 8, which was recorded last fall, we reflect on curveballs that life has thrown our way and how we, fumblingly, do the best we can to respond and find our way through. Discussion points include:
How have you helped your child make sense of situations like the death of a loved one or a big life change when you are struggling yourself?
What are some of your signs that you’re at your maximum capacity (or beyond)?
How can we respond when we react in ways we regret?
What are our kids’ cues that they’re near or beyond capacity to manage uncertainty and stress too?