I want to talk a bit about trust. Trust in yourself, in others, in the world, in your food. Trust that you will wake up and not have any surprises in your day.
This is a part of Autism. Trust is broken almost on a daily basis.
My boys (especially Z) often have a hard time with change. With something not happening the way it has before. Perhaps they are used to sleeping in on the weekend, slowly going about their day. And then BOOM.. We have to wake up early to get to this or that event.
Z expects to start his day with dry cereal. This is followed quickly by cheese and crackers. Then chips. On and on through the abstract pattern he created years ago. And then BOOM.. We are out of cereal. His trust in this pattern of food is broken, how will he get back on track? Does he start with something different or just skip this part of the pattern? Or not eat at all that day?
Z expects to wake up on Mondays and both him and his brother go to school. And then BOOM.. He has a day off… He starts worrying… Why did we not go to school? What are we doing today instead? Will I still have a lunch packed? Maybe he has the day off but brother does not. Is he in trouble? Will he ever see his school again (and do whatever patterns he does at school?).
We go to the supermarket and get the same list of items each week. And then BOOM… They are out of the pre-cooked chicken. Where is it? Did they move it? Does the chicken not exist anymore? What will go in his lunch? Will he like the alternative?
We have plans to go somewhere and spend time packing. As we are packing, the excitement of the activity is building. And then BOOM… The outing is cancelled. Maybe the staff is not available or our car has broken down or someone gets sick. The worry builds as the bags are unpacked. Why are we not getting in the car? Why is the bag being unpacked? Did I do something? Are we doing something different?
The world is also untrustworthy. One day it could be hot and the next cold. When it rains, the day changes with what activities are done. Our clothes get wet and uncomfortable. There could be lightning and thunder which can be scary and inconsistent. If you have to wear a jacket every morning in the winter, it can take a bit to be okay with no jacket when the sun starts coming out.
If we put on socks we have to put on shoes. If we put on shoes we should be leaving the house. If you touch the backpack you better be putting a lunch in there and going to school. If either of my boys sees his swim trunks, they better be going to the beach or swimming at a pool.
And believe me, these are only a few questions. I imagine their brain literally explodes with an influx of questions and concerns. Anxiety builds to the point of having to act out aggressively. Focus is completely gone for hours on end. Words cannot be found to explain to those around what needs to happen.
But change is a huge part of life. It will always be there in one way or another. It is impossible to have the same exact day every day of your life.
To account for this and make our life the “safe space”, I am very aware of my actions throughout the day. I am very aware of any change in schedule, weather, activity. I plan ahead for any and all changes throughout the day. And the sheer load that creates on my mind is overwhelming.
The outside world sees this mental load as unnecessary. They see my actions as controlling and call me a “helicopter mom” and a “worry wart”. They do not see that I am doing everything in my power to maintain this trust for my child. They do not know what it means to break this trust. They do not know how many days it may take to build the trust again. They do not see what progress we lose and the regression that ultimately occurs.
So I will continue to plan ahead. To pack the extra snacks and clothes. To plan for alternative plans. To not always accept invitations if I expect it to throw us off too much. To not explain my reasoning in just about everything I do.
But mostly, I will plan not to have you see any of this. I want to protect you from this mental load. From this inability to be “free spirited” and “go with the flow”. You will see me with the smile and I will try and follow along with your conversation. All the while, my brain is carefully cataloguing every little change I see or expect. Because at least my kids know I will always do my best to be someone they can trust.
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