At 8:45, the text came from his teacher:
He's having a really rough morning. Spitting, generally being disruptive.
We pass a few messages back and forth, trying to figure out what's going on with him. Is it a meds problem? Is it the weather? Any new staff members or students? and on it goes, until the video snippet arrives. He tore up his spelling test, crumpled it and threw it in the trash.
"Get him out of the classroom" I said, thinking of the damage to the social life I had so carefully constructed. If the class sees him as a troublemaker or the class clown or (worst of all) a baby who can't control his behavior, then how is he going to share classroom space with them as equals for the next decade?
"I already have" she replied, because of course she has. For the reasons I worried about as well as the disruption of the classroom and his own obvious discomfort. I can focus on one aspect of one child at a time--she is able to weigh the varied needs of many children at once.
So I text my husband that we're having a bad morning, and to school I go. When I arrive he is sitting in the swing, scripting loudly and chewing on his shirt. Another student is nearby with the Ipad my son is not allowed to have (by my choice. He once used it for calming, but I now prefer he use something else and consider the electronics as rewards). The teacher and two aides are giving one-on-one instruction to other students while the third aide observes Nathan from a distance--for whatever reason, he's decided 'it's her fault I'm in time out!'.
So we swing. The aide returns to the classroom and brings back a toy he likes to chew on. The teacher gets me a weighted vest that we put on his lap. One of the aides adjusts the lights so our corner is dark but the other side of the classroom still has enough light for the students to work. I throw my coat over the top of the swing to give him a more cave-like feel, and I sit on the floor to help him the only way I can--by forcing him to do the things that calm him.
My phone beeps--my husband wants more details. I give him the outline of where we are, and then he texts back.
What was happening before he melted down? How was he when you dropped him off?
What my head reads is 'do we know what the trigger was so we can prevent this reaction in the future?'
My heart reads 'So what did you do or not do that led us here?'
Because that's what I'm asking myself. He got the meds late--was he already in sensory overload and the meds didn't help? I was busy worrying about our trip today and all the things I needed to do. Did I miss a clue this morning? Was the morning too hectic? Did I not give him the hugs and backrubs that his sensory-seeking brain needs to function? Did I ignore the clues that today was not a good day because I was so focused on my own to-do list?
So he swings and I wallow. In my guilt, my sadness, my confusion, my exhaustion. I keep checking to see where we are--ten minutes in, he's able to include me in his script. Five more minutes and he can answer basic questions with a processing delay of about 20 seconds. A few minutes later, and the processing time is down to about 8 seconds. He's chewing less and less, talking more and more. Less scripting, more conversation. I try the spelling words, and it's a dramatic failure. We swing some more. I try again. This time, he wants to spell other words. I ask him to spell How, he wants to spell alphabet. I say 'spell don't', he wants to spell blend. I adjust the weighted vest again, let him swing a few more minutes. This time, he spells the spelling words. He's confused that don't has an apostrophe but want doesn't. That's my boy--he's back. He's not ready to return to class, but he came back to me.
"That's something" says my husband's text.
"That's everything" I think.
"That's everything" I think.
It's time to push him a little harder. We put the weighted vest on, and he sighs a world-weary sigh. He knows what's coming. He knows he needs it. He is not looking forward to it.
We leave the room and go next door to the empty lounge. It's a multi-use room, but it's empty right now. He spends three minutes running around the room and jumping. He's talking to me, trying to pull me into his game of make believe. I refuse to join. "It's school time" I say. "We need to focus on school time now". My brave boy looks at me and says "ok mom". He's on board. We do some jumping jacks. Half-jumping jacks, really, jumping with our feet and holding hands. We count to 100 with only a few stops, and when we get to 77 he hyper-focuses, determined to reach 100. That's my boy.
When the jumping jacks are done, he wants to write. We try a pen and a post it note--he's doing all the letters of his name but he's not managing the left-to-right-in-a-single-line part of writing. We're almost there.
I get him a bigger sheet of paper and a crayon. Now we're talking. He draws a picture of "Big John Henry" and I briefly wonder where he learned about John Henry. My musings are interrupted though--he still can't write his name.
We return to the classroom, and he shows his picture to his autism teacher. He's able to tell her what he drew. I bring him to a desk and give him a pencil. He begins to write a scripted sentence. He goes left to right on the page. His letters are too big, and he's skipping some--his brain is still moving faster than his hand--but he's doing it. When he gets to the edge of the page, he goes back to the left and begins writing underneath--YES! When he reaches the edge of the page this time he's still not finished, so he goes back to the left and the top of the paper to finish his sentence. A little disappointing, but not incredibly unusual for a first grader, so I think I'm ready to leave.
I check in with the teacher. She's already worked out the details of re-integrating him into his class. Of course she has--while I'm worried about this moment, she's planning the rest of the day.
As I walk out the door, I text my husband.
We leave the room and go next door to the empty lounge. It's a multi-use room, but it's empty right now. He spends three minutes running around the room and jumping. He's talking to me, trying to pull me into his game of make believe. I refuse to join. "It's school time" I say. "We need to focus on school time now". My brave boy looks at me and says "ok mom". He's on board. We do some jumping jacks. Half-jumping jacks, really, jumping with our feet and holding hands. We count to 100 with only a few stops, and when we get to 77 he hyper-focuses, determined to reach 100. That's my boy.
When the jumping jacks are done, he wants to write. We try a pen and a post it note--he's doing all the letters of his name but he's not managing the left-to-right-in-a-single-line part of writing. We're almost there.
I get him a bigger sheet of paper and a crayon. Now we're talking. He draws a picture of "Big John Henry" and I briefly wonder where he learned about John Henry. My musings are interrupted though--he still can't write his name.
We return to the classroom, and he shows his picture to his autism teacher. He's able to tell her what he drew. I bring him to a desk and give him a pencil. He begins to write a scripted sentence. He goes left to right on the page. His letters are too big, and he's skipping some--his brain is still moving faster than his hand--but he's doing it. When he gets to the edge of the page, he goes back to the left and begins writing underneath--YES! When he reaches the edge of the page this time he's still not finished, so he goes back to the left and the top of the paper to finish his sentence. A little disappointing, but not incredibly unusual for a first grader, so I think I'm ready to leave.
I check in with the teacher. She's already worked out the details of re-integrating him into his class. Of course she has--while I'm worried about this moment, she's planning the rest of the day.
As I walk out the door, I text my husband.
I'm headed home. He seems back to himself--let's hope it sticks.
I was tired before this. I was already running on empty--now? I don't even know.
And then he responds:
Sorry, Love.
My head reads 'Sorry, that sucks. You've had a rough morning. Let's hope it's smooth sailing for the rest of the day'
My heart reads 'I'm so sorry, my Love. I am sorry this isn't the life we planned. I'm sorry that you're so tired and I can't give you the time you need to recover. I am sorry that you are emotionally exhausted and that you keep pushing yourself because things need to happen and you're the one who needs to do them. I love you and I love our boys and I'm so sorry that we all need so much more than we can give each other.'
As I was driving home, my phone beeped. My heart skipped a beat as I glanced down. i couldn't see the screen. I thought there was something wrong with my phone until I realized I couldn't see the screen because there were tears in my eyes. Tears of pride and joy because this time, we got through it. Tears of fear that next time we won't get through it. Tears of sadness because my boy needs so much and I'm struggling to figure out what he needs, meet his needs, and still meet the needs of his brothers. Tears of exhaustion because I have a headache that won't go away and there's never enough sleep or time. Tears because I'm running on empty, because I'm so tired that I can't describe it, and because the fumes and caffeine I'm running on are not enough for the jobs I need to do. Tears because sometimes, there's nothing else you can do but wipe away the tears and realize the beep was just a coupon for a store you won't be shopping at before the tears of relief that it wasn't another catastrophe spill over.
My heart reads 'I'm so sorry, my Love. I am sorry this isn't the life we planned. I'm sorry that you're so tired and I can't give you the time you need to recover. I am sorry that you are emotionally exhausted and that you keep pushing yourself because things need to happen and you're the one who needs to do them. I love you and I love our boys and I'm so sorry that we all need so much more than we can give each other.'
As I was driving home, my phone beeped. My heart skipped a beat as I glanced down. i couldn't see the screen. I thought there was something wrong with my phone until I realized I couldn't see the screen because there were tears in my eyes. Tears of pride and joy because this time, we got through it. Tears of fear that next time we won't get through it. Tears of sadness because my boy needs so much and I'm struggling to figure out what he needs, meet his needs, and still meet the needs of his brothers. Tears of exhaustion because I have a headache that won't go away and there's never enough sleep or time. Tears because I'm running on empty, because I'm so tired that I can't describe it, and because the fumes and caffeine I'm running on are not enough for the jobs I need to do. Tears because sometimes, there's nothing else you can do but wipe away the tears and realize the beep was just a coupon for a store you won't be shopping at before the tears of relief that it wasn't another catastrophe spill over.
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