Hello parents, caregivers, and professionals! We’re glad you’re here. At Communities Engaging Autism we empower and support young families living with autism so they can engage fully in their communities.
Relationships are the heart wellness, of families, and of communities, and well-being. As parents come to understand, support, accept, and engage children on the autism spectrum, we grow ourselves and reshape our families and communities. We practice inclusion every day. It takes courage and it is often uncertain, so let’s do this together.
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.
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?”
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.
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