A Magnificent Boy

He runs like a gust of wind, fast and brisk. Every now and then, he looks back to see if I'm still following. Of course I am, I've been chasing him for years. At last his hand is within my reach and I grab it, hold on tight. Any other time I would put the brakes to his elopement but I see his face and it radiates such pure joy, I allow him to pull me along.

And so we run.

We run hand in hand as the wind whips through our hair. Even though it is night and even though we are surrounded by crowds at a football game, I feel everything still into this perfect moment: me and my boy flying through space. I am part of his world in this moment. When he looks up at me, it's as if in slow motion, his face a breathtaking picture of contentment, mischief and love. His face tells me more about what he's feeling than any words could.

I feel the same desperate love lurch from my body as I did the day he was born and they gave him and his brother to me to hold. It's so brutal and exquisite all at the same time.

I think of this as I read the results of his neuropsych evaluation, a report so stark, so black and white, I throw it across the room. I am knocked down by its coldness and surprised that my grief lies dormant so close to the surface. The sobs I hear, the sobs I cry are so violent — am I still grieving?

Expressive and receptive language skills roughly equivalent to those of a 2-year-old child; daily living skills…a 1-year, 10-month to 2-year, 5-month-old child; socialization skills…an 8-month-old to 1-year, 4-month-old child.

The gap widens the older he becomes.

I remind myself this is just another moment in time, a day in which John was at the tail-end of a strep infection. I remind myself that it is hard to test someone with John's unique verbal challenges and that just like receiving that first diagnosis, he is still the same boy. I tell myself that I'm not a failure as his mom, as his primary teacher. It is what it is. And he's a happy child, an amazing boy with abilities to be discovered over time. He is not this report. My grief lies in seeing anyone dare sum him up this way. Why oh why must he be summed up at all?

I remember chasing him across the football field and then how we ran together. I think of all the moments he reveals himself to us, moments of stunning technicolor, his soul bare for all to witness. What if I could gather all these moments, like a cup of jewels, and write my own report. I would start with: A gust of wind, a magnificent boy.

Hello, Doom! Welcome Back to School

John is a gentle soul. I don't just say this because I'm his mom — anyone who has ever met him says it too. He's so easy-going, a sweetie, a love.

This week he came home from school with the word "aggressive" attached to his day. As in "John became aggressive and needed two of us to restrain him." 

My heart sank, I immediately went into fight mode. I knew it! I thought, he's in the wrong placement, with a new teacher who doesn't get him, who can I call, what can I do? Must call an IEP meeting! He's never been aggressive, doom, doom, doom.

I rifle around for phone numbers, the teacher's, the autism office, the principal. Oh my god, who do I call to protest this word attached to my boy? I tried to picture Aggression and John in the same thought and came up empty. Sure, there's the body-dropping when he really, really, really doesn't want to go in to the house/store/party. There's the whine and the Are you okay? when he protests the potty or bed time. He's never hit me or another child. He used to bite Sam on occasion, but to be honest, Sam usually provoked it.

I call the school, ask for the teacher. Stew, wait on the line. She's gone for the day. I call the autism office and get a number out of order. Stew, fume, tap feet. Find number for someone in Dept. of Ed and just as I'm pondering whether to make the call, Twins Dad calls me. He barely says hello before I'm falling all over myself, The injustice! Can you believe it? WTF, who do I yell at?

Because he's the rational one most of the time, he talks me down, says it's very possible that John could have lashed out — first week of school with a new teacher after three months of little routine. Transitions. Hello? Suggests I send an email with my concerns to the teacher, copy autism office, ask for just a little more detail since we don't often see this word and John together.

Oh. Well, that makes sense. I stop, take a breath and write 26 different versions of an email asking for more information and wait. And wait. And wait. I wait until 10 p.m. and decide it might be a little unrealistic to expect a response now. Go to bed and fret about John's whole year (of course I do, because if I didn't, what would I do instead — sleep? Don't be crazy, people).

The next morning the phone rings. His teacher. His new teacher who I've already decided to not like. She tells me what transpired. He was on the computer. He loves the computer! I think to myself. And he did not want to stop playing on the computer. Oh, I think, I could see that. So we told him we'd be moving on to another activity and gave him a warning. Hmm...I wonder how that went. He body dropped. Yes, I can picture it. Then he started flailing and scratching me. He tore my badge and my necklace. I had to ask for help to restrain him. Oh, baby, were you that mad? I can see it. Almost.

And then, just as I'm starting to hyperventilate on the other end, my mind already going down a path to Behavior Modification Plan, his teacher, the new teacher I've already decided not to like, says "I think he's just testing me to see what he can get away with since I'm new to him." And I start to thaw a little. "Please don't worry, I'm sure this is just part of his transition back to school," and I release my breath. I might start liking her.

(Just a little bit, though)

Because this business of being his advocate, of making sure he's getting the best, the most appropriate education, feels huge. Often. I worry that if I don't stay on top of it at all times I'm letting him down, I'm not doing enough. I've always been a fight or flight type of gal, and I see now that learning how to pick my battles while letting a lot of it go is my biggest challenge.