Howie was on the floor of his room. He was wrapped up in a towel, drying off from the shower.

“Mom. Do I look in sorts?”

“I don’t know. Not really I guess. Maybe a little? Are you?”

“No,” he responded. “I’m a little out of sorts.”

“I could tell. You think it’s because you’re not feeling well?” He had been battling a mystery fever for the past two days. No other symptoms, just a low grade fever.

“No. Not that.” He was looking up – not at my face but just passed me.

I stood over him as he stayed cocooned up on the floor.

“Why do you think you’re out of sorts?”

“Sensory overload,” he replied. His eyes shifted and immediately connected with mine.

“Really. What overloaded you?”

He sighed.

“Life.”

Howie paused for a moment.

“Sometimes that just happens,” he said.  “I need a fidget. Like something rubber. Or a ball.”

He said it in a very quiet, almost nasally voice. It’s the voice I recognize when he’s uncomfortable.

I looked around quickly in his room.

“I found a small Minecraft Creeper figure. Will this do?”

“Yeah.”

He took it from me and smiled.

I took a quick picture of him on the floor with the creeper and showed him his happy face. He stayed on the floor for a few minutes, rubbing his hands over the figure and squeezing it.

I left the room to help Lewis into the shower. When I returned, he was dressed in his pajamas and in bed.

“Can I share the picture I took of you with the creeper to show people how you look when you’re back in sorts?”

He snuggled under the covers and grabbed his weighted stuffed animal.

“No,” he said. “Don’t share it. Can I have a Mom squish?”

I leaned over and squished him tight. Part of his self-advocacy has to be the right of refusal of what I share and what I don’t.

“I won’t share it. I promise. I love you.”

I took my position at the end of his bed. He slid his legs under mine and fell asleep.

**********

I could write about the sheer enormity of that conversation and what it means for him, for me, and for the people in his world. About how much hard work he has done with his teachers and therapists to get here – to not only understand his body but express it in a way that we could understand. I could write about all the signs I missed during the day today that could have told me what he so eloquently did tonight and even though I preach “behavior is communication”, I ignored it all.

I could write that.

But right now I am just listening to him sleep. Soft, even breaths.

The ones that I now recognize come when he’s back “in sorts”.

And I’m just going to stay here a while.

A photo from a different wrapped in a towel day. One that I had permission to share in the past.

A photo from a different wrapped in a towel day. One that I’ve had permission to share in the past.

 Walk with me the diamond road
Tell me every story told
Give me something of your soul
That I can hold onto
I want to wake up to the sound of waves
Crashing on a brand new day
Keep the memory of your face
But wipe the pain away” – 
Diamond Road by Sheryl Crow

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Self-advocacy.

I’ve been thinking a lot lately about self-advocacy and how it could fit for Howie. I read Jess’ brilliant piece at Diary of a Mom about her daughter Brooke and her participation in her IEP meeting and I sat there trying to think of ways that Howie could start to participate. Ways for him to feel included in how his school plans are made. Wondering how, at age six, it could work for Howie.

He’s always been very good at expressing to others his joy or dislike for certain activities, whether it be through his words or through his behavior. In fact, when he transitioned from preschool to kindergarten, his teachers and aides all said “Just give Howie a minute to tell you his side. You may not agree with him, but if he feels like you heard him, he’ll be more likely to figure out the solution together.”

This year, the toughest part of the day for Howie is his “Fundations” class. It’s the spelling/language arts lesson. It’s mid-morning, and he moves into a different classroom for the lesson. Howie is in a 1st/2nd grade combined class. For the Fundations lesson, the first graders move next door to work with other first grade kids, and the second grade kids stay in his classroom and are joined by other second graders. I know it sounds complicated, but it works. But for Howie there are several things at play: a different teacher, a different classroom, different kids and a subject that is clearly “non-preferred”. It’s not that he can’t do the work, he just doesn’t like it. From the beginning of school this year, it’s the one real bumpy part of the day. He knows when it’s coming at 9:30 and his behavior and anxiety starts to amp up. Many mornings, he’s had to leave the classroom and do his Fundations lessons in the smaller sub-separate classroom away from his peers.

Which would be fine if that’s what he needed. But what he really wants – and needs – is to be a part of the larger group as much as possible to get the full lesson and work with his peers.

I’ve done a lot of brainstorming with his teachers about it – incentives, plans, etc. None of our ideas seem to stick.

Turns out, the ideas had to come from him.

When Howie returned to school after winter break, he sat down with one of his aides to talk about Fundations. He was perseverating on the fact that it was boring and that he thought he had to say “A – Apple – A” each time (practicing letter sounds). I got a note home that they had created a social story to help him get through the lesson.

"How to Stay in Fundations" by Howie

“How to Stay in Fundations” by Howie

His teachers sent a copy of it home so I could see it and we could talk about it.

I thought his teachers wrote it and shared it with Howie.

Turns out, Howie wrote this all by himself.

Since writing this social story, Howie has been able to not only sit through the whole Fundations lesson, but be an active participant with his peers.

So at the very moment that I was trying to figure out how to help Howie participate more, he was doing it himself.

Slightly ironic, no?

I know this is just the beginning of this for him. That the more he understands his body and his brain, the more he’ll be the one to express what he needs.

Because it really should come from him, right?

(so grateful to his teachers this year who understand how important this is too)

Baby steps towards self-advocacy for my all star.

So much to do so much to see
So what’s wrong with taking the back streets
You’ll never know if you don’t go
You’ll never shine if you don’t glow

Hey now you’re an All Star get your game on, go play
Hey now you’re a Rock Star get the show on get paid
And all that glitters is gold
Only shooting stars break the mold” – All Star by Smash Mouth