Weathering the Back to School Storm

Yesterday I woke up relieved that it was Friday. We had made it; we survived the first week of virtual learning, and then I realized that it was Thursday, and we still had two more days of this torture.

I, like many other parents of students with IEPs, have watched our children struggle in frustration over a learning environment that simply does not work. Spending four and a half hours in front of a screen with much of the time taken up waiting for the attendance roll to be called, tolerating the technology glitches and frozen screens, and then all of the time spent reminding classmates to mute themselves, or dealing with the blaring TV of a friend who never got that memo has served to magnify the focus and attention issues already present.

And that is just the issues we encountered during art, music, PE, and media this week. These classes are the only opportunity my son has for inclusion, and in this environment, he was even further excluded. His needs weren’t considered, nothing was modified for him, and no lesson plans were sent to me ahead of time so that I could prepare and support him.

Under normal circumstances, I would voice my concerns, request a meeting, and let the powers that be know that change needs to happen, but that feels a little awkward given that we are all, school system employees included, just trying to do our best and weather this back to school storm. So today may not be the day that I fire off the email about how far we need to go with inclusion, but I can let go of the guilt I have for not being able to get him to engage, participate, and like this style of learning.

I have spent vacation hours each day this week serving as my son’s paraprofessional to help him attend online school because I never came up with a better plan. I still have a job that requires me to work in my office so homeschooling them this year didn’t come to fruition.

So I would dress for work and then wrestle my seven-year-old alligator as he attempted to engage with his teacher through the tiny screen. I would call him to return to the room to work, and then say a little prayer that he would. I sat behind him with my body as a shield to keep him engaged because other than brute force, I had no other tactics or incentives to keep him in place. By Friday, he had lost all interest and his avoidance was so strong that I didn’t have the heart to force it any longer. So I sat on Zoom with his teacher while he ran laps around our house swiping handfuls of cheerios as he breezed by the kitchen. And you know what? I was ok with that.

When my kids were younger, the pediatrician told us not to worry about their eating habits. He said to make the nutritious food available, and then leave it up to them to decide what they will and won’t eat. It was freeing advice that allowed me to relax, create an opportunity for success, and then let the child take the lead. And guess what? My kids eat healthy foods now, they are growing and they are just fine.

So I’m going to translate that wisdom here and acknowledge the following:

1. I’m not going to feel guilty that he’s not perfectly perched in front of a device ready to learn several times throughout the day.

2. It’s ok that he won’t answer questions I know he knows

3. I’ve done everything in my power to support his learning.

So with that, I’m going to roll into the Labor Day weekend in celebration rather than defeat.

Social Stories for Everyone

In anticipation of our beach vacation, I’ve been prepping our middle child for the disruption in routine, change in his environment, and new expectations that a beach trip will bring because autism is often accompanied by its companion, anxiety. Our son struggles with newness, which results in crying and escape behavior. For years we’ve used social stories to help him navigate change, and it has evolved into social story videos where we convey what will happen, who will be there, and what he can expect to experience. We do this to reduce his anxiety and give him the confidence to approach new situations, and it occurred to me this week just how powerful this tool really is and that we all could utilize it right now as the world reopens and moves through each states phases and restrictions.

My dentist’s office created a video showing patients exactly what visiting their office will now look like. It began with entering their parking lot, followed by direction to call their office. When determined safe to enter the building, the staff member walked the patient in and straight back to their treatment room. The video tour showed the changes made to the waiting area; no longer filled with chairs and hard to disinfect magazines. Next was the extensive steps taken to minimize touchpoints and germ exposure. In doing so they are helping to reduce the anxiety associated with a change in routine, environment, and expectations, thus allowing patients to comfortably resume their service.

At the start of the pandemic, I had read a meme that said “The whole world is frustrated with last minute change. NOT SO FUN IS IT? – AUTISTICS EVERYWHERE” and it completely resonated with us because we are constantly in the business of jumping through hoops to traverse unexpected events and changes in our environment with our son.

I think that we could learn a lot from our friends with autism and what works for them. I think we may find that we don’t cope much differently and can respond to the same steps used to address the anxiousness that we are feeling as we begin to transition back into a world filled with Plexiglass shields, mask requirements and one-way directional flows.

Families need to understand what it will look like for their children to go back to school, whether that is to preschool or their first year of college. And until they envision it, much like prospective buyers eyeing homes for sale on the market, unless it’s staged and displays the potential, the property will sit, and the same goes for colleges praying for increased enrollment. Families will nervously sit, wait, and watch.

Until we can acknowledge and address the anxiety that exists, we will remain in this painful limbo of uncertainty, which just serves to further increase the anxiety already present. Let’s take a page from the autism handbook, and begin communicating with each other what the expectations will be, how things are different, and what we can do to move through this new world.  I encourage businesses, preschools, therapy clinics, schools, and colleges to consider demonstrating what returning will look like. I think it will do a ton of good to help us all return with confidence.

Meanwhile, I’ll be over here, showing my son the video I created that gives him an audiovisual tour of where we will be staying and what he can expect. By doing so, I am involving him in the learning process, and this involvement translates into the empowerment to move forward with confidence.

For tips on creating social stories, check out:

Anatomy of a Storm

I posted a school photo of Mark on Facebook and Instagram, extremely happy with how beautifully my precious boy was captured, dimple and all. He smiled with his entire being and it showed.

And moments after I posted the photo, the thunder and lightening started, and the storm began.

Mark had his iPad and he was perseverating over a game that asked him to pick what his bed looked like. Mark sleeps in an enclosed bed with tall walls which keep him safe, and free from escape, and of course the game did not have an option like that. I can’t communicate that to him, as much I tried. And he lost it.

So we did what we normally do.

The script unfolded like this.

Quick, hide the iPad.

Alexa, play Lumineers.

Alexa, turn up the volume.

Mark, do you want sticks? Long pause.

Pretzels? Long pause.

What about cookies? Shorter pause.

Crying is intensifying.

Oh look, Mark! Your favorite street signs. I precariously present each one as if they were precious gems.

Not impressed.

We teeter down the stairs as I try to encourage him to independently walk while also supporting most of his weight persuading him down to the basement.

How about a ride in your swing? His arms methodically pump at his sides filled with nervous, anxious energy. Face red, teeth gritted.

I’m not getting it. I don’t know what will fix my sweet, incredibly frustrated boy. Anxious I can’t think straight. I just want it to stop.

I put his rigid arms into each of the sleeves of his jacket.

Mark, let’s run in the yard! I coax him outside and encourage him to take off and breathe some fresh air.

He takes a few steps onto the patio, and freezes, then begins aimlessly running.

What about your favorite You Tube video? A is for Apple, Ahh Ahh Apple. B is for… I run toward him, arm extended. Can you hear it? Do you need the volume higher? Why can’t phones be louder?!

I chase after him. He heads for the front door. It’s locked. He pounds his little fists against the door in defeat.

I sprint to the back door and shout for Ike to run upstairs and unlock the door for him.

Ike heads upstairs. It takes too long. Mark runs again away from the house.

The sobs are louder. I watch as he sprints across the property running his fingers along the mesh wire on the inside of the split rails of our fence. I’m thankful for the fence. Really thankful.

I watch Luke watch Mark, and wonder if this will always be normal to him. Watching his brother unravel while the family tries to problem solve and unsuccessfully intervene.

Mark’s crying is louder and harder. He hurts. I hurt. I sink into that dark place. The place where helplessness has a new meaning.

Jillian feels it too. She sprints out to escort him back inside, speaking softly and sweetly to him as she holds his arm, guiding him back to the house.

Ok, Mark. I tell him, I’m sorry, outside wasn’t it.

Back in the house, past the toys I had hoped would entice him, and up the stairs to where the storm began.

How about Word World?

Ike kicks off his shoes, scoops up his boy, and tightly cradles him in his arms under a blanket on the couch. He calmly holds him as Mark continues to cry. But with each moment like this on the couch, his show playing, and the rest of us just sitting in the living room, watching and waiting, Mark’s breathing slows, the tears dry, and the storm surge recedes.

Exhausted and depleted, I slump in the recliner as I watch him eventually hop down and begin to play with his prized possessions, the wooden letters that make up his name.

And the rest of the evening was normal. The meltdown was over, and the seas were quiet, just like they were before storm began. His dimple on his cheek beaming, as he peacefully plays with his letters. It was as if nothing had happened. Absolutely nothing.

The storms have no warning. No forecast and no explanation. They are a product of limited communication, a low frustration threshold and an inability to regulate the central nervous system.

It feels like they last for hours, but really it’s probably minutes. They feel intense because they are, but they don’t define him. Or us. They are what they are, and we try our best to weather them with him.

Between them, we talk about how we could have navigated something more successfully, how we can avoid one in the future and what clues we might have missed. We think, we ponder, and we pray. And we try not to think about what this may look like years and many more pounds from now.

But in this moment, right now, we know that loving Mark during a storm is desperate, painful and yet such an incredibly beautiful honor, for all of us.