Parents who live in Autismland know a lot about expectations.
- You learn very quickly that your children need to KNOW what to expect in any given situation (although that’s practically impossible). Surprises don’t go over very well for most people but for children – and adults – with autism, surprises are literally like earthquakes, shaking their world, making everything uncertain and fearful. Surprises aren’t just unwelcome, they’re downright frightening and a recipe for disaster.
- The other thing you learn about expectations is that while you do your best to prepare for every contingency, your kids – and the world in general – will trip you up. In other words, we learn to “expect the unexpected.” You plan for every conceivable thing, and the ONE thing you didn’t plan on is the thing that happens.
Welcome to the insanity. You need to know what to expect, yet you really can’t – and – you prepare for everything you “think” you can expect, but you can’t.
It’s LIFE. Even for the best of us it can be rough. But for kids and adults with autism, and for their parents and families the stress at times can be unbearable. I would guess that the vast majority of autistic meltdowns have to do with the unexpected: unexpected places, unexpected people, unexpected noises, a change in the expected routine.
And you know what, this craving for the expected, for the routine, rubs off on parents. And this, like many other aspects of autism, impacts the whole family. I like to consider myself a “go with the flow” kind of person, but when it comes to my autistic daughter, if I don’t have everything “just so” I get almost as anxious as she does. When it comes to her, the expectation insanity stresses me considerably. As a result, at least with anything that will impact her, I become almost as dependent on expectations as she is.
My daughter is starting in a new program in September, which is a good thing. She no longer needs the intensive services she’s been receiving in her current program – a program she has been in since the age of three. In the spring my husband and I toured the school where she’ll be going. On another visit my daughter and I went along with her current teachers. Problem is, the class she’ll be a part of is a newly created class – one that doesn’t exist yet. Demand has created this class, and while I’m thankful the district is responding to the needs of the students, it’s left a lot “up in the air.” Up in the air is bad for my daughter, and as a result, bad for me.
Who will her teacher be? Last I heard they were still in the process of hiring. Where in the building where her classroom be? She’s been to the building, but wants to know where her class is and I can’t tell her. Who will be in her class? Don’t know. We might know two children, but nothing official. She takes the bus TO school (I pick her up in the afternoon). At her previous program, staff would be at the bus door to escort the kids to their room. In the new program she will be responsible for getting off the bus and to her class – – but she needs to LEARN this routine. I cannot let her get on the bus on the first day of school without HER knowing where she has to go and how to get there. My daughter is not a wanderer (thank GOD), but if she doesn’t know where she’s going, she might get lost.
So many questions. School starts in just over a month and we do NOT know what to expect. She is asking me all the questions, and I have no answers. This makes her anxious, which makes me anxious. I’ve given the school the month of July to figure things out, but as we’re approaching August (when ALL the special education staff take their much-deserved vacations), I see myself spending A LOT of time on the phone trying to get as much of this sorted as possible.
Change is hard, because expectations…