Spike in Awareness

After his day of perseveration, Sam spiked a fever right before bed time: 102.6. The next morning he awoke soaked and lethargic and warm. Mommy, clean Sam's sheets, he said, right before curling up on the couch under a blanket. He stayed home from school and as I watched him lie there all still and quiet and so not like he was even 12 hours before, I wondered if this sudden illness had something to do with his unusual afternoon.

This morning, two days later and well again, I watched as he studied John's finger movements at the breakfast table and then brought his own fingers up and tried to position them the same way. Oh... I see. Imitation — that's good, right?

Whatever was going on the other day, I am past it. But it sure made me realize that I'm scared. Watching Sam retreat into a place I'm not used to seeing him go really shook me up. I've written before how I often "forget" that Sam has autism. His autistic traits are not as obvious as his brother's, and I'm afraid that I still expect too much of him, get frustrated too easily when he gets stuck or has a meltdown or seems like he can't hear me.

I have secretly thought: If something were to happen to us, Sam will take care of John. But who will take care of Sam? Sometimes, realizing that both my boys have autism crashes over me like it's the first time I'm hearing it. Like I don't live and breathe all things autism, like my blog doesn't contain the very word? But then it settles in again and I'm okay. A little more aware and okay.

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Today was Sam's IEP meeting. It went well, he got what we wanted for him, but I felt inexplicably sad that we'll be changing up his world in a pretty major way come fall. Typical preschool in the a.m., same terrific special ed. program in the afternoons but with a new teacher. We declined ESY in favor of sending him to OT camp and as a result he'll be separated from his favorite class buddy, C, this summer. Hearing about their interactions at school nearly made me sob right then and there with doubt.

I try to recall feeling similar last year when we were about to leave the cocoon of Early Intervention, and I can. I just want him to stretch, to have new experiences, to learn flexibility. All things that I could benefit from... this is not lost on me.

Perseveration

per·sev·er·ate •
–verb (used without object), -at·ed, -at·ing.
to repeat something insistently or redundantly

It has been said by others that a blog, by design, reveals only the sides you wish to share. I try to be positive in my posts because so often I'm not away from here. I avoid blogging as much as I'd like, I think — because to write is to face yourself and acknowledge your fears. To write is to look at what you've been trying to push away. Like tonight — I am plagued by doubt and worry, obsessing on what every little stim means, where every odd phrase is coming from, what every blank stare could portend.

And no, I'm not worried about John so much as Sam. Today he perseverated on this the entire afternoon: How are you feeling, Mommy? Are you happy? And I would answer Yes, Sam, I am very happy. Two minutes later: Are you happy Mommy? I would try Yes, I'm happy, are you happy Sam? Five minutes later, yelled from another room: Mommy! Are you happy Mommy? Like a broken record, he posed this question every 2-5 minutes for the next two hours. I tried ignoring, distracting, yelling, holding, talking.

I hate it when I yell, when I feel so out of control.

Then there were a few blank stares thrown in and the odd, out-of-the-blue hand and finger movements. There was some nonsense talk that was directed at no one. There was the play date at the playground with his classmates when he refused to leave my side and begged to go home as soon as we arrived (while I chased John who kept beelining for the exit).

Well, can I just say (1) Signing Time DVD, My Whole Family/Feelings: you are headed back to the library tomorrow. We don't want you 'round here no more, and (2) this is why I married my husband who said: It's just one day, a moment. That's all. and held me as I released my day.

One Rainy Day

Sometimes the planets are aligned and my camera is actually sitting nearby... As he does every morning before school, Sam dictated his schedule to me. While we waited for the bus, he read it back to me. I do have lots to update and will soon!