I’ve always heard that autistic people like structured activities. I’ve always been told that they work much better when they can see what is coming next, what they have already accomplished, and how much longer they have to go until whatever it is they are working on is completed – be it a task or a period of time. Because of this they like to use things like schedules and itineraries, maps and diagrams, timetables and calendars, etc. Although I have constantly been told this I always believed, quite inaccurately, that this was the one gray area in which Mia didn’t exactly fit the mold.
It’s funny how you can go on for so long thinking you know someone completely – inside and out. And even though Mia doesn’t always answer my questions, or even speak functionally for that matter, I always assumed I knew all there was to know about her. I always assumed I knew her completely – inside and out. Today, on this lovely snow day, I learned just how wrong I am.
I learned today that Mia not only likes the structure of a schedule, she needs one to cope. I can see why. It makes sense. It’s much easier to know how you’re expected to behave when you know what you are going to be doing – different situations call for different conduct, right?
Until today I never really thought Mia needed these tools outside of the classroom. I never did any scheduling with her. It has always been a sort of “free for all” at my house. Yes, we do set things at set times but I have never taken the time to map them out for her. I never made any sort of visual reference aid. This makes me feel like I have not adequately given my daughter a way for her to understand what behavior is expected of her. I haven’t given her a reference model. I haven’t given her a way to handle the rigors of life – I’ve left her to fend for herself as best she can manage. Alone. I feel really bad about this actually. I should probably tell you why, and how I came about this information.
But first I need to tell you I expected that she needed these tools for a time now. Whenever Mia has a scheduled day off from school (other than the weekend) she is a little bit lost, a little bit disorganized. But it’s nothing like it was today. This is probably because in her classroom they discuss it – the if’s, why’s, and when’s of having a day off. And on some level she knows and understands that. She expects the day off.
I should probably also tell you that her classroom is so structured and organized it puts me to shame. I don’t think they do anything without first talking about it and looking at it on their visual schedule. Everything is mapped out, down to walking in the halls from this room to that. Once an activity is completed it is marked off as such. This is definitely a major reason why she is flourishing in this classroom setting this year. And this is probably also a major factor in why all of a sudden she has had such amazing growth but is seemingly more lost in unexplained situations that she would have previously been okay in; like a random Wednesday off from school due to inclement weather, such as today.
Mia has a pretty great internal clock (it’s not always regulated to where she is doing appropriate activities at appropriate times, like sleep for example, but that’s another post entirely.) At around 9:30 this morning her internal clock told her something was amiss. She started to say “backpack” which, in her own way, means “Why the hell haven’t you taken me to school yet, Mom?” I explained to her that it had snowed and she had the day off because no one wanted to drive. She seemed happy enough with this explanation. It wasn’t long after this conversation that she became antsy, bored, and disorganized. It was like she didn’t know what to do, or how to do it. I’ve experienced this with her before but never to this extent.
Before noon rolled around we had been in every room of the house already – consequently destroying and cleaning them as we went. We had baked a cake together, waited for it to cool, and then frosted it. We did puzzles and played iPad games. She took three bathes. We went in and out of the house to play in the snow more times than I can count. Mia was wandering aimlessly around, looking more detached, distracted, and uneasy with each passing moment. She was trying to figure out how to cope with an unplanned day off. She was trying to feel comfortable out of sync with the norm. She was trying to ease herself into a routine with no visual aid. And it was hard work.
We moved so quickly from one activity to another that I only realized what the issue really was when I finally sat down this evening. I wish I had realized it sooner. I would have made her a picture board mapping out the rest of the day. I would have been better able to talk her out of the rough situation she was in. I would have given her a way out of the confusion the day had caused her. But, alas, I did not.
I guess hindsight is always twenty-twenty. And all I can hope to do is learn from my mistakes. So, tomorrow while Mia is in school I am going to make an at home visual scheduling aid for her – a huge laminated itinerary board with velcro pictures of different at home activities (i.e. brushing your teeth, taking a bath, playing, eating.. etc.). I am going to buy her a calendar to talk about what day of the week it is and what we will be doing that day, what we will be doing that weekend, and what we have to look forward to that month. I am going to make her a few informative and detailed picture books about different activities – outside the home and within. These “books” will outline with pictures (and words) what we will be doing there, what it will look like and what behaviors she should exhibit while we are there. Simple little tools Mia can use to better understand, and thus, better cope with any situation and, most importantly, altered agendas.
I understand that there will always be unexpected changes. I understand that sometimes stuff happens and normal schedules are thrown off course. But I also understand that with these things in place Mia will be better able to handle changes when they arrive. And, even though I feel bad that Mia had a difficult day today, I feel invigorated with the prospect of helping her manage in the future.