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.

12 Comments

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  • Oh, KAL, your words are so heartfelt, so honest. I’m sending you a hug tonight. Trust that the decisions you made in the IEP will lead to growth in leaps and bounds come the fall.

  • Why is it that even when we get what we “want” those IEP meetings so often leave us feeling sad and unsure?

    Sending you a hug and a wish for a Happy Mother’s Day.

  • Every time my son gets a nasty cold / flu / whatever, he regresses in a scary way. But I have to keep reminding myself that he works so hard to control impulses, etc. that he must let it out when his body is otherwise feeling ill.

    It frightens me, and every time I worry he won’t “come back,” and yet he does. Still, it reminds me of how difficult it must be to “behave properly” because it takes so much energy to do so.

    Best of luck with all these transitions.

  • I’m catching up after a busy couple weeks. I’m sorry you had some tough days. That fear about someone to take care of your child is a hard one. Hope you’re doing all right.

  • Almost every major leap forward Bub has had has been preceded by a period of regression. Every time it happens I smack myself for forgetting the pattern – and then the next time I forget again.

  • I hope that by now Sam is feeling better. You are such a thoughtful mother, those beautiful boys are lucky to have you. And gorgeous photos, by the way.

  • Change is certainly a scary thing when mixed in with autism but it sounds like you’ve thought through Sam’s needs and very clearly identified what is going to work for him. The fact that you’re happy with the IEP indicates that you’ve made the right choices – not necessarily the easy ones, but the right ones for Sam. Hope the sadness passes quickly x

  • Oh dear one I know exactly how you feel, only you feel it double. I will pray for you as you and your family go through each coming change and adjustment. You sound like a wonderful mother and pray the Lord will bless you greatly for all the hard work you do on their behalf.

    Stay strong,
    Nancy

  • vicsihYour posts oftern make me cry because it could be my thoughts on my twins. I think you’re a wonderful writer.
    Hope the boys are well. Caitlin had a seizure today and Claudia (My ‘more autistic’ child) didn’t bat an eyelid! When Caitlin recovered, the first thing she said was “Where’s my Claudia?” I know what you mean about “who will look after…” , but I’m still hoping that all beit unconventionally, they WILL look after each other!
    Lots of love
    Sally

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