My second son was diagnosed with Autism at 18 months old. He was non-verbal back then and I was told to not expect him to ever speak. I was told to look into teaching him other forms of communication. Without hesitation I chose American Sign Language because I have an aunt that was born deaf and I felt it would bring our family closer together. Many of us have already learned the language to converse with and include her when we see her at family reunions. The best part: she was delighted with my choice. My fluency in the language remains very broken. And a miracle occurred in our family: my Autistic son began speaking basic words in Kindergarten.
Much to my ire, the public school moved him away from sign language. He never uses it at all now. They treated it like it’s not a valid language and completely disregarded my family’ culture. What the hell? And they introduced to him PECS. Which is also a valid language, but one that uses a distinct universal set of pictures to communicate. So now I’m pissed, why is PECS acceptable, but not sign language? I refused to use it in my home beyond visual reinforcement measures since their argument was “we need to encourage him to speak.”
But something happened by accident. I was still in college at the time and I was utilizing the flylady.net flight manual method of organizing my life by breaking down my day into segments of routines. I was struggling to make this system work. As a single parent at the time with both boys so young, everything fell on my shoulders. There was no one else to turn to for help since my family lived several hours away. I had to get my homework done, keep track of therapies, get everyone where they needed to be, keep the home clean, make the meals, etc. And I was drowning. I felt like inside my head I was a constant screaming storm. Little by little, not sure why, my reusable checklists were transformed into visual charts. Each chart was one routine of the day, marked with the time it was supposed to start. Each item on my checklist got a picture reminding me what it is was. Like mopping the floor got a picture of a mop for example.
We still have visual charts in the home, but I can honestly say it’s still mostly for me. Sure we use them for my Autistic son when we are teaching him a new skill, but once he has mastered it he doesn’t even look at it anymore. It’s our routine visuals chart that everyone relies on now.
This is what I have learned over the years using visual routine charts:
- You understand the pictures even when your brain is a chaotic mess
- You pick up the routine from where you’re at based on the time of day
- Two routines – Wake Up and Bedtime – always happen every day no matter what
- If you missed a daily routine because something happened, don’t panic there’s always tomorrow
- These visual charts can help track your ADLs (activities of daily living) and housekeeping goals
- They keep you organized regardless of mood state
- They help maintain self-discipline and self accountability regardless of mood state
- It gives you a sense of accomplishment to check the items off
I’ve noticed now that many office programs have clip art that support this concept so you don’t need to use the PECS images if you don’t want to. One year I surfed the internet and made all my charts using just Hello Kitty pictures. I was really pleased to find a picture of her doing everything – or something very close to it – on my routines. I even found pictures of her dressed as various super heroes, so naturally those became the images for my weekly missions.
The point I’m trying to make here is they don’t have to be boring. Spend a day making them. How do I do it? First, I write-up a schedule of my busiest typical day in 15 minute intervals. Yes, there is a reason for this. I typically do this in a spreadsheet program so I can move things around and highlight each type of item a different color. So med times all got one color. Public school got another color. Each homeschool activity block got a separate color. Work would get a different color. Cleaning and chores get their own color. You get the idea.
So on your schedule start with the uncompromising things that must happen no matter what like medications, school, and work. These must happen and are not negotiable. Next stick in the stuff associated with that: travel time needed to get to said work and school or meals to be eaten with medications. You have to plan time for that if that’s part of the packaged deal. If you have to eat a meal to take your meds you now need to include prepping and cleaning up after the meal, so add that time to your schedule.
Now you need to decide what time you need to wake up and get ready for all that. Be honest with yourself on how long it takes you to get up and get ready for your day. If it takes you an hour to get moving, do not give yourself only 15 minutes. That’s just plain mean. So be kind and plan the right amount of time for yourself.Stick that into your schedule.
How much sleep do you need? The National Sleep Foundation revisited this question for their 25th anniversary and released their findings in a research paper in 2014. Check Table 2 for your specific age group. I land in the Adult category needing 7 to 9 hours of sleep. I have two children in the school aged group so for them it’s 7 to 8 hours. I have one teenager so for him it’s 7 hours. I think aiming for 8 hours is a safe bet for everyone because I’m pretty sure none of us are actually sleeping that much. Decide on your goal of sleep, then count back from the time you get up. That’s your hour of sleep. Prior to that you need to plan how much time it takes to get ready for bed. Stick that into your schedule.
If meals haven’t been planned, because you don’t take meds or they don’t need to be at mealtimes, then stick that into your schedule now. Include meal prep and cleaning up after times too.
You now have all the things on your schedule that must happen. It’s time for the flexible stuff that may or may not happen, depending on whether or not you’re home.
- Choose a fixed time to clean
- Choose a fixed time for home office stuff (you know bills and paperwork)
- If you homeschool, choose a fixed time for lesson planning, etc.
- If you homeschool, choose a fixed time for teaching
- If you are in school, choose a fixed time for studying and course work
- Choose a fixed time for medical care (mood charts, refilling pill boxes, etc.)
- Choose a fixed time for some exercise (it doesn’t have to be intense, just enough to get you going)
- Choose a fixed time for some quality personal YOU time (and this is important!)
- Choose a fixed time for some quality time with loved ones (be it family or friends, also important!)
Some of these items need to be daily while others can be weekly. You decide. You’ll find your schedule for the day fills up fast and you’ll suddenly understand why you feel so chaotic and overwhelmed. You may even find it hard to find space to fit some things in. That’s okay. Life does that. And if you find yourself in that place, like I often do, it’s a signal to start a reevaluation of what you have going on in your life and start asking yourself “what can I let go of?” and “what can I say no to?”
I’m serious. I’m writing this post because I stopped using the visual charts around the time my youngest was born. My life and my home has since gone to shit. I’ve blamed it on a lot of things. One of these things I have blamed it on is because I haven’t been using these charts anymore so I sat down and put this schedule together with the intent of making new ones for my current life to get things back in order. I did a schedule of myself and three boys side by side. What I discovered and saw was that we were so booked with therapies, appointments, Special Olympics, field trips – you name it – that not only were we never home to eat at the table, but we weren’t home long enough to clean. We came home just long enough to unwind, pass out, and start the day over again. No wonder we are all stressed out and my cholesterol is so high this last lab. We don’t eat fast food, but we are still eating out a lot. This project has been a serious wake up call for me. I realized we have been living mostly in our car, using our home as a transient jumping point at best. That completely sucks. It forced me to realize that my family was over scheduled and over taxed in activity. We needed down time for ourselves and each other – and time to take care of our home. No, I didn’t start axing things blindly. I presented my issue, with a copy of my newly minted schedule in my hands, to our care teams to discuss options and to see what is critical and what is optional. Each family member got to keep one optional thing if they desired. Just one. Everything else that was optional was dropped. I won’t lie. It wasn’t an easy process. And of course there is always that one person who has to claim that everything they have going on in your life is absolutely critical. When that happens, and it will, look at that shit with a fine tooth comb.
So if you find yourself in a similar position, I encourage you to do the same. Dig really deep and ask those tough questions about what is truly important. Do not allow others to obligate you into chaos – especially if you have children to take care of. It’s imperative that you take care of yourself so you can take care of them. And whether you have children or not, you need to aim for stability. A packed schedule that doesn’t allow for basic housekeeping, doesn’t give room for all the ADLs, and doesn’t nurture a supportive social network is not stable and not sustainable. It will collapse and consume you. You need to construct a schedule that supports and sustains these three principles.
Okay, so now you have your schedule! It’s time to build those visual routine charts. Again, I use a spreadsheet program to make my charts. Feel free to use what ever you would like to make yours. Break your day down into small parts of the day. Start with labeling each part of the day with a title. It might look something like this:
- Wake Up Routine
- Morning Routine
- Afternoon Routine
- Evening Routine
- Bedtime Routine
Try to keep it as simple as possible. The simpler it is, the easier it is to follow. Now you can pick whichever routine you want to start with and start building it. Here are the rules:
- The chart uses 3 columns
- 1st Column is for the picture matching the step
- 2nd Column is for the 1 step instruction of the routine
- 3rd Column is the space where you check it off
- If an item in the routine has multiple steps within it that needs to be explained, like “Take a Shower” or “Clean Your Room”, create a separate chart for it and put it where it is needed (this is important for people with Autism, ADHD, and anyone else with impairments to executive functioning skills – the part of the brain that handles planning and organizing)
Once you have finished all your charts, print them off. To make them reusable, either laminate them or slide them into sheet protectors. You can use dry erase markers to check the items off and then use a dry cloth or tissue to wipe them clean the next day. Post your routine charts in a visually prominent location of your home so you can’t miss them each day. If you keep a mood tracker, include whether or not you followed your charts that day to hold yourself accountable. Doing so is also a good way of keeping track of your overall functionality and whether or not you are keeping up with your ADLs.
If you are using these with your children, you can pair these charts up with a reward system if you use one. Chores are now built into the routine of the family’s day with these charts. No excuses of “I forgot” or “I didn’t know it was supposed to be done today” are not allowed anymore. It’s right there on your chart for all to see so it either gets done or it didn’t and if so, it gets checked off. Check marks on the routine chart earn whatever corresponding reward your system has: be it stickers, points, etc. This does two things: the reward system reinforces the good behaviors you want and the routine charts are teaching them that chores are part of everyday life.
So in closing, even though I was originally offended by the PECS all those years ago, I have come to appreciate their value even if the official language isn’t used in my home. The PECS offer a means to communicate for anyone who is unable to verbally – not just those with Autism. As for visual routine charts, it helps anyone with executive function difficulties, learning difficulties, and disordered thinking. I don’t know why, but there is something powerful in visual cues. The old saying is “a picture is worth a thousand words.” I believe that to be true in our world of neurodiversity.