I learned a long time ago that autism and expectations do not mix. They cannot mix. Because every single day on the spectrum is different. We learn to accept that the things that go perfectly one day can be a complete disaster the next day. Things can change without notice. Without reason. At least, without a reason that I can see or understand. We have learned that expectations set us up for failure. Sometimes we expect something to be great and we are overcome with disappointment when it goes poorly. Other times things that we expect to be terrible turn out great and we feel disappointed in ourselves for being negative and not having more faith. You see expectations require the ability to predict; and that is just not something parents of ASD can do.
This part is hard for people outside of our everyday reality to understand. I cannot tell you how many times I have been asked “how do you think Grayson will do at (blank)?” Or “what time do you think Grayson will want to (blank)?” Or “where do you think is the best place for Grayson to (blank)? The answer is simple, I have no clue! I have no idea how he will act. I cannot predict all of the stimulants or environmental factors that may derail him. I cannot guess if he will like something or not. Yes, even when he has done the specific activity or gone to the specific place before. Every single moment of every single day depends on a million big and little factors. We can usually tell within 5 seconds of Grayson waking up what kind of mood he is in. If he comes straight to our bed and climbs in; it is going to be a good day. If he goes into the toy room and hides out; it is going to be a sad day. If he goes into the living room and sits on the couch; it is going to be a wiggly day. If he sleeps in and we have to wake him up; TAKE COVER! When we venture out of the house I do not know if he will be rigid or easy breezy. I do not know if my gentle cues will make the situation better or worse. I cannot control the environment, the people in it, or his reaction to it. I am powerless that way. And feeling powerless, in any way, as a parent is a terrible feeling. So, all I can do is be honest. I do not know. And if you need me to know, then it is probably a better idea that you do not include us. It sounds harsh, but that is our truth. We live our life one moment at a time. Preparing for anything, expecting nothing.
I can remember the first time I realized that being a parent to a child with ASD meant that I was going to have to let go of my need to control everything. It was just a few months after diagnosis and we were preparing to go to a 4th of July party last year. I excitedly dressed Grayson and Rowan in their adorable red, white and blue outfits. We headed out the door with expectations for a fun afternoon of bouncy rides and sno-cones and carnival games. We arrived at the party early. By this time we already realized that we needed a little bit of “settling in” time. As we walked up to the party Grayson’s eyes grew as he took in the site of all of the exciting things. He took off running and in an instant he was bounding up the stairs of the bouncy house to go down the slide. I do not remember exactly how long we were at the party; it was less than an thirty minutes. I do not remember exactly all of the details that lead to our exit. But I do remember that I left that party with tears rolling down my face; holding my thrashing three-year old against my chest and bolting for the parking lot. I remember that I after we got home I went into my bedroom for longer than I care to admit to and cried. Sobbed. I remember coming out of the bedroom and walking over to Grayson and squeezing him so tight in my embrace. Sorry that I could not protect him from his world. Sorry that I could not be stronger for him. Sorry that I could not fix the world. Fix the people in it. You see, I expected a fabulous afternoon filled with fun and laughter. And sure, I should have foreseen the obstacles. I should have prepared for the stimulants. Maybe I should have expected that Grayson would not understand the rules of the slide. Maybe I should have expected that he would try to climb up the slide instead of the ladder. Maybe I should have expected that he would collide with a little girl coming down the slide. But, it never would have dawned on me to expect the mother of the little girl to scowl at me and say “you need to control your child before someone gets hurt.” Maybe she was not wrong. Maybe Grayson’s behaviors and reactions to all the stimulants was causing a problem. And as we walked through the parking lot my head filled with all of the expectations of the day that would not be realized. And in that moment I knew that I had to protect myself from the disappointment of unrealized expectations. And to do that, I had to let go. Let go of control. Let go of expectations.
This year we went to that same party. This time, with no expectations. After last year I protected myself from the expectation that it would go perfectly. And because of all of the work we have done over the past year I simply could not allow myself to expect it to go poorly. So we went in without expectations. The important difference between this year and last year was that I had found a voice for our life. For Grayson’s ASD. If I faced the same ignorant woman I would be ready to respond. I would ask her for compassion. Sure, because Grayson has autism, but mostly because he is 4 and like any mom I am doing the best I can. I may be learning to live without expectations for Gray’s behaviors and his ASD, but there are a few things that I will always expect.
I expect people to be nice and show compassion.
I expect people to embrace Grayson. Show him patience. Teach him.
I expect people to ask questions to my face rather than talk behind my back.
I expect to make mistakes.
I expect people to forgive me for my ungraceful moments.
I expect our life to be wonderful.
This weekend we defied all odds. We went to our first movie and Grayson watched the entire thing beginning to end. Everyone left smiling. We ever to bed 2 hours late 3 nights in a row and everyone stayed happy and upbeat. We saw fireworks twice, some of us from inside where the sounds did not bother our ears. We went to 2 4th of July parties and Grayson listened and waited in lines and left smiling. We pushed ourselves beyond our comfort zone. We are doing the work every single day. And we deserve the chance to test it out in the real world. And wow, what a difference a year makes! Sure, it may not always be perfect. I may have to step to the side and let the man running the slide know that Gray has ASD and ask him to say “1 minute buddy” instead of “NO” when Grayson tries to climb the slide too soon. I may have to use timers and verbal cues to keep Grayson on track. I may have to pack and extra big bag of tricks “just in case”. This is our normal. This is our life. Our journey. And even though I did not expect it, and even though I did not predict it, and even though I cannot control it….somehow, it is still filled with a million wonderful moments.