Ever Vigilant, Ever Questioning, Ever Guessing

He had a great day! – says the teacher who has brought D to my car after school. She starts to shut the door.

Hold on, I say. Did he go anywhere today?

Yes, we went to the mall – the teacher says.

What did you do there, I ask?

Mainly walked around and worked on a few tasks, the teacher says as they shut the door.

Um, ok. It’s not like I can expect D to tell me the details of his day, I think to myself.

You have to wonder sometimes if you are getting accurate information. For the most part, I do. I do believe that when I pick up D from school, and the teacher who has walked him to my car tells me that he had a great day, that for the most part it was.

You have to understand what “great day” means. It’s different for each student in D’s autism school.

You have to also understand that the teachers are taught to write positive things in the daily note that comes in his communication binder. At least, that’s how things are in D’s school. A lead teacher once explained to me that for the most part, the school figured out that parents and care givers don’t want to be saddled with all the difficulties of what happened in the day. They want to hear just the positives.

So, the positives are what’s conveyed.

I told that teacher – yep, that’s not me. Give me all of it. The positives, the down and dirty. If I don’t know, I will not have better understanding of how my son’s day was and how that may affect how the rest of the day goes, the choices we will make.

But I still pretty much get just one or two positive sentences and a he rocked today! verbal message when I pick him up. Great. Thanks. Then why is he losing his self-control barely a few minutes into the ride home? To be fair though, this is D’s fifth month in this new program and this new building he is in. He spent about five years in the same classroom (with rotating teachers) in another building when he transferred back to this private school from the public-school system.

In his old classroom, they had gotten to know me and how I worked well. They knew what I wanted to hear (the truth – the good and bad), and they were quick to call me if things started going south. During one particularly difficult ongoing period, D’s teacher called me daily before I came to pick him up to give me a head’s up about everything that happened during the day.

His new classroom in this new program in other building is organized differently – from how the classroom is designed to how the teachers work with the students to the fact that they do community-based instruction nearly daily (which I love for D) to many other things.

Suffice to say, we are all still getting used to each other. Transitions have always been a slow process for D, and I feel like the rest of his inner circle doesn’t always get that though it looks like he has moved quickly enough into the new groove of his life, it’s a much-longer path of finding a good rhythm to our teamwork.

So, I worry and periodically email and gently nudge D’s lead teacher to please tell me more. Please give me more information. I want to know. I tell the lead teacher that when we have our nightly family dinner, the kids and I like to ask D about his day, about where he went, what he did so we can include him in our conversations. If we have an idea of what happened, we can help lead the conversation and prompt him for “yes” and “no” answers.

I don’t want to be a thorn in his teachers’ sides with all my requests. I don’t want to be viewed as that parent, who then gets shut out. But, I want them to know that I am watching, I am listening, I respect them, I appreciate them, and I have expectations. It’s a delicate dance we dance in a partnership I never wanted, a life I never hoped for my son.

Last week, after helping D to bathe and change his clothes after swimming, I immediately discovered bruises on his back. My mom radar started blipping wildly. This isn’t the first time, nor will it be the last, when I’ve found something amiss on his body and have scrambled to figure out what happened. Where did it happen? How did it happen? Is it self-injury? Was he harmed or abused?

I drove D to school the next morning instead of putting him on the bus (because what if something happened on the bus to cause those bruises) and asked to talk to his lead teacher. Fairly quickly we got to the bottom of the mysterious bruises.

I texted my husband to let him know that I had figured out what had happened. I wondered if he had been agonizing over this as much as I had – but that’s a different story. He responded: Good investigating!

I wrote back, Yeah, but sad that it happens at all.

He replied, Yes. Always a guessing game.

To which I said, Well, I’d say more always as vigilance game. I check his body daily and note everything. Every different thing in his day as much as possible. And also, a guessing game. Some things I’ll never get over.

When the time comes, when D and I can converse with each other in some way shape or form, in this life or the next, I will have so many questions.

So many.