Once the routine is broken...

Going to a school event between 5-6pm is perfectly normal for most households. Not a big deal. Rarely does anyone understand the terror and dread I experience when I find out my presence is required at something that is a deviation from our routine. Whether I bring AKA to the event or try to find a sitter--either way it's a deviation from the routine, therefore, I can expect about 24-48 hours of increased anxiety after the deviation.

For good reason, we are home by 4pm every day, hunkered down for the night. It takes AKA awhile to wind down before bed. Like 3 hours. So by 7pm she is nice and calm and relaxed--and she drops right off to sleep without hassle (staying asleep is another matter entirely, however). Our end of day routine is predictable for her. She requires this to function, since in reality we can't keep the beginning and middle of the day predictable, because that would be impossible. Unless it's like the Ground Hog Day movie. AKA would love to be stuck in a looped day. She would see no problem with that at all!

So yesterday we went to the Back to School family night meeting at her preschool. From 5-6pm. I expressed my concern to the director about the time of the meeting and tried to explain how it's not part of our routine. I was hinting for a reprieve, hoping she'd say I could just take home the materials to read, or she'd schedule a special time to meet with me to go over what was discussed. No such luck. The director really does understand spectrum kids. She has worked as a paraeducator and therapist for autistic kids. She knows! Yet, she did not budge on the mandatory meeting. One parent has to attend. I'm the only parent. Therefore, I must go.

Childcare was provided, so AKA played outside with the other kids during the meeting. The meeting itself went fine. No meltdowns, no sign of anxiety. Not until later.

When we got home the impact of the deviation of routine set in. I had to work a lot harder to get her through the bed routine. In her mind, the routine is out the window, it's a free for all now, let's party! That was last night. Now today she has increased anxiety. Instead of following me around all morning saying, "Look where we are going, look where we are going, look where we are going..." it was, "look where we are going tomorrow, look where we are going tomorrow, look where we are going tomorrow..." That's how I know she's experiencing increased anxiety, when she jumps past the day at hand and wants to know where we're going tomorrow. It's a sign that she has lost all sense of what's going on in her life. She is adrift in the unknown.

It was harder than normal to get her ready for school today and once we got there she was upset and didn't want anyone to look at her and didn't want to play outside during the morning play time and didn't want me to leave.

But thank you God, there is an assistant teacher there who has a teenage autistic son. She gets it! She knew we might be a bit off today so she came prepared with a basket of tactile toys (green and blue squishy geckos--AKA's favorite colors and animals and texture!). As I was leaving (when AKA finally let me), the asst. teacher quietly said, "It was because of last night, huh?" She went on to say how she knows all it takes is one small break of the routine to cause days of anxiety. And I just wanted to hug her! It is absolutely priceless to me when someone gets it. It tells me that I am not just imagining all this, because since most people I know DO NOT get it, and I just get a lot of blank looks and crickets chirping when I try to explain why we do or don't do things. Since AKA has become verbal, almost hyper-verbal, and hyper-social, they see her as a typical kid without any problems but for a rigid, overprotective mother. They don't see that it's our routine that enables her to be so functional. Once the routine is broken, she falls apart.