The Struggle of Struggling the Struggles

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I don’t even know where to begin with this post. The past week and a half has been extremely…life sucking. Constant screaming, constant need, me and Mrs. M going through some kind of Twilight Zone bump, constant repairs, constant everything.

I’m going to get a little real and raw with you. Autism sucks. Hate me all you want, but it does. I hate autism, but I love my kids. You always hear the “wins” of autism. Like the Florida woman who became a lawyer who is on the spectrum, how a classmate with autism gave a speech at their graduation ceremony, or how someone got a job in a high paying field. But you never hear what it took to get there. The meltdowns, therapy, changing of meds, the screaming, hitting, getting stared at in public, refusals, having to do things a certain way, avoiding public. Autism isn’t all feel good stories. Most days it’s life and soul sucking. You do all of this work with your kids; working on behaviors, transitions, motor skills, coping mechanisms, schedule, routine, visuals. Yet nothing seems to work and you still get hit, screamed at, and attempting to not rip their arm out of the socket as they fight to not get in the car. All while out in public.

But I think I found the problem

Let me back up for a minute and explain what autism spectrum disorder, or ASD for short, is. ASD is a neurological disorder that affects motor, communication, and cognitive skills and sensory over- or under-stimulation. Autism is actually an umbrella term that includes a little bit of a lot; ADD, ADHD, SPD, ODD, etc. I’m not going to go down the rabbit hole of all that comes with it like the behavioral issues and sensory issues and how they’re closely connected. That requires time and energy I don’t have. But people on the spectrum, typically kids, rely on routine and visuals in their day to day life. Routine keeps them behavioral regulated and visuals help them communicate/understand.

My boys are literal opposites. True Ying and true Yang. Oldest doesn’t get enough sensory input and my youngest gets too much. Oldest doesn’t transition easily from activity to the next where my youngest has minimal issues with it. It makes for a very tiring day…every day. But, what they both need is routine. They usually get that routine while being in school. Pro Tip: They’re not in school full time during the summer.

This is where I had my epiphany. They had summer school for about a month this year. Just a half day and only 4 days a week. There was routine during that time. But when summer school was over with, they did okay with not having routine at home; until they weren’t okay with not having routine at home. It was a slow build up. Each day just got a little bit worse and worse, but I didn’t notice it because we’ve had some crazy weather this year. During the build up of them acting out, we had a lot of very humid days, dangerous heat indices, rain, and severe weather. Now that things have settled down, they’re getting antsy.

Enter the Visual Schedule

A visual schedule is just like sounds. You use pictures to create a schedule for the day. You could make it as simple or as complex as you need. Just want to throw a couple of visuals up of what’s going to happen that day? Sure. Want to time everything out to the minute? Why not. It’s your schedule, your household, your “groove.” For kids on the spectrum, this is great to maintaining routine in the household so things don’t get out of hand. The even better part? You can use a visual schedule if you have neurotypical, also known as “normal,” kids. Even NT kids needs to have routine at home since they’re not in school.

See, when school is not in session, or they’re on a break, kids don’t know what to do. Unlike adults, where we create our to-do lists when we have time, kids don’t do that. I mean, who really wants to create a to-do list that requires more work, but you get what I mean. So since kids don’t have their own to-do list, they just do what they see as fun. Well eventually they get bored, that energy builds, and they release it by running around the house screaming, hitting, and making a mess in the absolute most innocent way possible. Set up a visual schedule for the days with activities, appointments, physical activity, and when everyone will eat and those outbursts (hopefully) slow down significantly.

Here is the image of the visual schedule I made.

This is obviously just one example of what a day looks like. I tailor the schedule to work on certain skills, do certain activities based on my energy level and the weather, and a little on what the day of the week is, hence why the “Take A Shower” visual is up there.

This really isn’t much. And the idea is simple. When everyone wakes up, you put the “Wake Up” visual in the “All Done,” that’s the thumbs up at the bottom of the image, pocket. Then we move on to “Eat Breakfast.” When we’re done with breakfast, move it to the “All Done” pocket. Rinse and repeat until it’s time to go to bed. I’m sure you noticed the “No Phone” and “Phone” visual. I also use the visual schedule when certain actions need to be done. In this case, the phone has to go up before we can work on counting, doing some drawing, and then playing with LEGOs. Once they are done with their shower, then they can have their phone back to relax a little. We also have visuals for certain parks we go to; red park, blue park, or green park. (Chose the colors based on the slide color.)

What You Need to Make Your Own

The stuff needed for a visual schedule isn’t that hard. But get the visuals is different story. I’ll start with the easy stuff first.

You will need:

  • Daily schedule planner
  • Laminating machine
  • 3mm laminating sheets
  • Velcro hook and loop adhesive coins
  • Scissors or paper cutting board
  • Color printer

Quick Tip #1: Don’t get the self-laminating sheets; when you start cutting out the visuals, the adhesive doesn’t stick all the way through the paper giving you two laminate sides that move freely.

Quick Tip #2: Don’t print in black and white if you can help it; some of the images might look similar to someone who is developmental delayed so the colors are the only signifying difference for the kid/individual.

Okay, hard part out of the way. Now where can you find the visuals? Google and Pinterest should be your first stop. Search for things like “autism related visuals” or “autism PECS cards” or “autism flash cards.” These are strictly search terms. So even if your kid(s) are NT, don’t question it. Those search terms are just the ones that have been optimized for search and they show up easier. If you’re finding a lot of paid content, try adding “free” to the search term.

One site I recommend is FlashCardFox.com. I got A LOT of the really nice, really well designed ones from there. They come in a PDF so you can easily download them to your computer or laptop and save them for later.

Another site I recommend is Picto4.me. It’s a 100% free visual board maker with a huge library of free visuals to use. The only thing you need is a Google account since it uses Google Drive to save your data. Just make sure to access your boards through Picto4.me. The awesome thing about Picto4.me is that you don’t have to use this just for visuals. You can make a chart for potty training or for following a specific sequence of events like using the bathroom (go potty, wipe, put the seat down, flush, turn the faucet on, apply soap, scrub hands, rinse, turn the faucet off, dry hands, turn the light off, and all done) or a guaranteed daily routine. I used it to find the visuals my boys would need and use, print and laminating the board, and then cut out the visuals to be use on the schedule. You can even upload pictures if you can’t find a visual.

If you’re a teacher, daycare, work with kids and above with developmental delays, or plan on making a lot of boards/visuals, I would check out LessonPix.com. It’s a paid version of Picto4.me, but it’s only $36/year and gives you more options to choose from.

Good Luck and Make Time

It takes some time doing a visual schedule. From finding the visuals, deciding which ones will work for you, printing, laminating, cutting, applying the velcro coins, and setting it up to work the best for your home, it took me about 4 hours to get something simple down. And I’m not close to being down with it. So I would suggest getting something going first and then adding/adjusting as you go. Because as the needs of your home change, so will the visuals.

If you have questions or need help with something, leave a comment below and I’ll do my best to help you out.

Allons-y,
Mr. M

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1 Comment

  1. Love the post! It’s really honest and open about the struggles. My son has ADHD and anxiety. We have a lot of similar struggles with routines. Especially the gradual build of the angst when they don’t have an outlet!!

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