In Declan’s head

Ed note: The following is from the (imagined) perspective of Declan, an autistic 7th grader who I have seen for speech language therapy for several hours each week for two years. Some of this he was able to express in my words to me. Some of it I could figure out. And some is imagined based on what I know. I hope some day he will be able to tell me what I got right, and what I missed. Be kind, this is a weird kind of writing for me! I’ve never done anything remotely fictional before. All names have been changed.

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I walk down the hall, feeling the squirmy feeling in my stomach. It is excitement. Jen is outside her office, like she always is. She says,  “Hey Declan! It’s good to see you.” A few times earlier in the year she forgot that second part, so right before we began class I’d whisper to her,  “It’s good to see me.” I whispered because that way it would not bother the other friends. And then she would remember and say it to me.

I look at my friends in the room with us. When I was a little boy, Mommy and Daddy and teachers at the other school called everyone friends. But these two are my real friends. They like me and I like them! I grin and whisper to one of them,  “C for Carly!” and Carly smiles and says back like she always does,  “That’s right Declan!” She understands why I’m saying that, I think. It is because on the show that is Sesame Street that was on when I was a little boy, there was a girl named Carly and that’s what they said. And when I say that to Carly now it is to show her I like her like I liked Sesame Street. And she likes me too. Then I look at Maya, my other friend. I do our Friday routine. I say to her,  “What day is it, Maya?” and she exclaims,  “Friday!” We like our routines.

I am feeling so happy. Everything is right. Except then Carly and Maya start talking about who will be the teacher when they play school. This makes my belly squirmy but not the good kind.

“Ugh,” I tell Jen. “I really want to start our work. “

Jen say, ” I know. But we can give them one minute to talk.”

“Because why?” I ask. If there is a reason, it makes my belly calm down. Jen knows that. She always tells me the reason.

“Because it is okay to let people have a minute to talk. It is good practice for them to talk to each other. And it is good practice for you too. Like, is this a 5 problem?” Jen asks.

I grin because not only did Jen give me a good reason, she is launching into one of my most favorite scripts that always makes me make happy noises.

“No it is not a 5 problem. We don’t have to say….” I wait for Jen to do her part.

“We don’t have to say,  ‘AH!  STOP TALKING WE HAVE TO WORK RIGHT NOW!!” I love when Jen fake screams. I make some happy noises.

“We could just say…. ” and together we say, “Oh well, I can be flexible.”

Now I’m feeling much better. I watch the videos in my brain from when I could not be okay with that, from when it would make my belly feel so awful that I might scream. It is different now! I’m a bigger boy and I can use my scripts to help me feel soft and squealy instead of hard and breakable!

We get started with our activity. We are talking about problems and solutions. We talk about what’s a wacky solution and what’s a smart solution. We are practicing calling 911 because Carly wants to act out one of the situations. She is in theater club. My brain knows that in the file of Carly that is in that folder in the brain.

Carly pretends to dial 911 and Jen pretends to be the operator. This is pretend. I know that now because there is not a real phone. I play pretend too sometimes, like when I feel heavy because a friend is absent so I pretend call and talk to them so I feel better. Jen is telling Carly that the pretend officers will be there right away. It is sillyscarystrangefunnybumpyhardwhirly so my mouth laughs. Jen says,  “I know! It’s a little funny pretending.”  I am glad she doesn’t tell me to stop laughing. I am not laughing. I think other friends and teachers hear laughing but that is not what my body is trying to do. I don’t know how to explain that. But my friends and Jen get it.

I start thinking about going over a bridge because I love bridges. And then I imagine putting the bridge on my head. Jen used to teach me that we could script about that, but in real life, it isn’t possible to do things like that. I know. But in my brain real life isn’t going on. Anything can happen which is why I am making a bridge go on my head. I start laughing and then remember, OOPS! Out loud I remind myself,  “Pause that thought! You can save it for later.” Jen gives me a thumbs up. I pick up my pencil and on the paper next to me, I write,  “Putting a bridge on my head.” This is a paper where I can write anything I want so that the words are still there, just not in my mouth, and my brain will remember because my eyes will look there later so I can tell Jen and Carly and Maya about it.

I give one last squeal, because I am excited to tell them about the bridge, and then I make my ears listen to the group.

Body shaming and fat talk: they need to stop.

As always, this is a post that’s been brewing in my head for some time. 
No time like the present to babble, right?

So here’s the thing. Body shaming and fat talk NEED to stop. I don’t think there’s a single person out there who would disagree. But there’s a problem, a disconnect. Because despite everyone agreeing – it’s not getting better. It’s getting worse. Fast. 

I could get into the statistics of eating disorders, of body image issues, I could tell you real-life stories and point you to news clips and articles. And every single one of you will nod your head, agree that this is a huge problem, that it needs to stop.

But very few of you will do anything. The majority of you will go to work tomorrow and talk about how many “points” you’re eating during lunch. You’ll talk about how you want a piece of candy mid-morning but that you shouldn’t. You’ll compliment your co-worker on how she looks, which will make you think about what you don’t like about yourself, and more likely than not, she will dismiss it with a, “yeah right, I wish.” You’ll then start the back-and-forth of well at least you fit into a size ___ and well that’s only because I went to the gym last night and yeah, I wish I could eat anything I want. And the funny thing, that’s not so funny? It’s pointless. It will leave you feeling worse than you did before. And maybe you’ll realize that, maybe you won’t. But it fuels the fire. And my god, this fire has got to be put out.

Now. That’s a huge generalization. I realize that. I’m trying to make a point. And yes, there’s commiserating. There are absolutely days that I complain to a co-worker or a friend about how I’m bloated or don’t love my outfit, or just feel uncomfortable in my body. I might make a comment and move on. Because I’m human. And in that case, it’s beneficial. But the opposite? Where that turns into the constant back and forth that truly is less about comfort and commiserating and more about who has it “worse”? Pointless. Ineffective. Makes everything worse.

Ask yourself. When you’re sitting at lunch with your co-workers, does it REALLY make you feel wonderful inside to engage in 20-minute conversation about who ate more or less, who is or isn’t losing weight, who has the worst body image, who has or hasn’t gone to the gym for how many hours? Really? Or does it make you feel better if you have a pleasant lunch, talk about work or your families or the news or LIFE, and allow the food to go into your body to nourish it without consciously or unconsciously making yourself feel guilty for it?

Body shaming and fat talk need to stop because they don’t accomplish anything positive. And, they need to stop because as they continue to be present in our day-to-day interactions, they’re ruining our relationships. Sometimes if I’m around certain people, I almost feel like I can’t contribute to their conversations unless I engage in body shaming conversations. It’s all people talk about. I’ve sat at lunch before, silent, because I have absolutely nothing to say other than “for the love of god, PLEASE stop talking about this.” Somehow, our relationships have become largely about competition, about dragging each other down, about focusing on flaws and negativity and spiraling it further and further for each other. 

I know this isn’t going to change anything. You’ll nod and silently agree. And then, most likely, nothing will change tomorrow. But maybe? Just maybe…you’ll hold back those comments tomorrow. Maybe you’ll talk about the weather, about work, about a book you’re reading. Maybe you’ll notice what someone else is eating and silently acknowledge it without focusing on it. Maybe when you find yourself wanting to tell someone how “lucky” they are, for whatever body/food reason, you’ll let that thought float out of your head. And maybe you’ll realize – you’re happier that way.

“Nothing ventured, nothing gained”

That is the quote that I have heard umpteen times from my mom. My brother and I used to joke about it, because Mom said it so often. Of course, unsurprisingly, she was always right. We’d hear that when we were worried to ask a teacher for an extension on an assignment, when we were anxious about roommate troubles, when we wanted to negotiate jobs and salaries. A million times I’ve heard it. And it’s always been true. 

Mom would always remind us that the worst thing that could happen is someone would say “no”. No, I can’t give you that extension on your paper; no, I won’t wash my dishes; no, your job start date isn’t flexible. The worst that would happen is hearing that “no,” and yet, hearing that “no” wasn’t so bad at all. It was always worth it to know, rather than wonder, What would’ve happened if I had asked/spoken up? Plus – we could spend our whole lives thinking about doing things, wishing we were, or we could just DO them and see what happened, because chances were that what would happen would be a good thing.

And that’s how I feel about blogging. Yet another perfect example. I was scared to blog, then I was scared to tell my close friends and family, then I was scared to share it on Twitter and Facebook. And, for what? I spent so much time thinking about what would happen if people read it, wondering what their reactions would be, but once I actually did it, I felt great. I heard Mom’s voice in my head, advising me, “The worst thing that could happen is that people don’t read it, or they don’t like it.” And you know what? That’s not actually so bad. Because ultimately, this blog is for ME. And I’ve always maintained that if even one person gained something from even one of my posts, it was successful.

Plus – there would never be a “perfect time” to do it. I started to realize that I would never wake up one day and be 100% certain that I wanted to share my inner thoughts with the world. But if that perfect time was never happening….I might as well just go for it. And maybe someone will read it and be glad I wrote. Or maybe not. It doesn’t matter.

So I’ve already gained something from it. And I’m glad I ventured out.

Thanks, Mom! <3 

Learning Rambles 2

I have been avoiding writing this. Shocker, I know. I (still) feel like I have to justify my writing, put out the disclaimer that it might not be that good, so that if it ISN’T that good, I already prepared myself and won’t be let down. Or something. But anyway.

I wrote Learning Rambles the other week, and more and more thoughts are swirling in my mind. I finished reading Your Brain on Childhood, and we just finished two horrendous weeks of administering MCAS (state testing), and all of that combined is making me think.

Our education system is SO messed up. For all students. And/but especially for mine, who are all special ed students.

During MCAS, my students were required to sit in a room and read grade-level texts, and answer grade-level questions, when they often aren’t at grade level. My 7th grader struggled through the reading comprehension part. She reads at a 2nd grade level independently. She got frustrated. Yes, I could read out loud to her. No, that didn’t help. She has a language disorder among other learning disabilities. The point is that there is this push toward getting all kids on grade level. And this push is doing more damage than good.

There is SO much research to state that kids don’t learn best when they are stuck in a classroom all day. Many studies, even other countries who do it better than we do, demonstrate that less homework, more time outside, more free play time, and more time to focus on what they’re interested in, make happier, more creative kids. AND, most importantly, it does NOT hinder development of intelligence! That’s the problem. That’s the fear, the false belief. Neuroscience, psychology, it all shows that kids are meant to learn and develop in one way. And our educational system is forcing them into another way.

And we wonder why anxiety, depression, attention issues, etc., are all on the rise? 

Grade level shouldn’t be the goal. That’s not to say that learning isn’t important, that acquiring new knowledge isn’t important.

Grade level doesn’t mean anything. I’m sorry, I know that’s a bold statement, but it doesn’t. Many of my kids are nowhere near “grade level” but have far more skills in various other areas of intelligence than I do. “Grade level” does not equal happiness. It does not equal success. It does not equal a future.

“Grade level” is an idealistic term, a way of trying to cram every student into a box, when in reality, most students don’t fit in that box. “Grade level” is why I hear parent after parent of elementary and middle school kids stress in IEP meetings, saying, “If she isn’t reading at grade level, how will she ever graduate high school or go to college?” 

Along with the “grade level” issue is the “teach to the test.” I wrote, a few weeks ago, about how my students seem to learn more, and are happier and calmer, more creative and more interested, when we are learning about things THEY want to learn about, things they naturally stumble upon. And oh, how I want to do that all day every day. But I feel like I’m in a constant battle. I can’t NOT teach them how to answer inferential comprehension questions from random reading passages, because that’s what’s required for them to pass MCAS, and to graduate high school. And even for those parents, and there are so many of them, who have similar opinions as I do – what are they supposed to do? We are in the minority. What will we do – band together and decide to boycott MCAS and extracurriculars and homework? Sounds pretty ideal and great to me – except when, because the system is so flawed, these kids aren’t going to get into college, because despite being clearly intelligent and creative, they don’t have a high school diploma (not from not learning, but from not passing a standardized test that in no way captures what a student actually knows and is capable of), nor do they have 100 hours of extracurriculuar activities to “prove themselves”. 

I just don’t get how that is fair. I don’t get it at all. It frustrates me to no end because I feel stuck. I have these beliefs and what I know are truths – and I also have the system. And I’m not strong enough to fight against the system. 

If you have made it through this incredibly disorganized and not even remotely logical rant, kudos to you. Dare I say it, I want to hear what you have to say. 

Do you understand what I’m saying? Do you agree? Do you disagree? Do you have a way of explaining what I’m trying to get at that’s much more succinct and cohesive than how I said it? Is this an uphill battle that isn’t worth fighting?

What do you think?

 

Thoughts that have been collecting

Included, but not limited to:

-I hate MCAS. Hate it hate it hate it. That’s about as profound as I can get right now on that topic.

-During a break from MCAS with one of my 5th graders, I witnessed pure bliss and joy as we scripted a Garfield episode. His smile and laugh – amazing.

-Yoga tonight was sweaty and exhausting and great. I was in my body and grounded and feel wonderful.

-Fat talk needs to stop now. Period.

-I did two things that I had been avoiding and feel so good about it

-Today felt and smelled different – very clearly Spring-like. Hopeful.

-Hearing different philosophies and beliefs about the soul, the body, what happens after death, is incredibly draining but very thought-provoking, and dare I say, somewhat comforting.

I found my calm.

This morning I was anxious. Probably for a few reasons I could figure out, for a few others that I’m ignoring or avoiding, and a few that have not yet been excavated.

Anyway, I debated going to yoga or staying home on the couch under blankets. I love the Saturday morning class. But I had gone to yoga Thursday night, seeking grounding and calm, and got frustrated with myself. I couldn’t get out of my head, I couldn’t ground myself, I couldn’t quiet my thoughts. I left yoga judging myself MORE (productive, right?), texting a friend, “Yoga is supposed to be the ONE place where I can ground myself.”

Now, obviously judging how you’re feeling is like, the least productive thing in the entire world, but when you’re in the moment, it’s easier said than done. But, nevertheless, I got dressed and went to yoga. The anxiety in my stomach was swirling but I walked into the studio, put my mat in my favorite spot, stretched a bit, and lay down on my back, putting my hand on my belly, trying to feel myself breathe.

All of a sudden, a sweet voice popped into my head, saying, “Find your calm.” It was Brooke, an adorable, amazing girl, that despite never having met in person, I feel a deep connection with from the way her mom invites us into her head and her life, and because she reminds me so so much of all of my wonderful kids I work with. 

“Find your calm” became my mantra as I breathed in and out, and by the time class began, I had found it. My thoughts slowed down, my heart slowed down, I breathed deeply and felt myself relax.

Brooke: I hope one day I can tell you this, and I hope you understand, but please know that YOU helped ME find my calm.

Initiation

When my students have Occupational Therapy testing done, one item that is evaluated is their ability to initiate a task. I joked to a coworker the other day that initiation is the measure I would score lowest on.

There is often so much that I need to do and want to do. And I know that if I just started, I would get going, and I’d feel better about it. But I cannot, for the life of me, get myself to start.

I sit there knowing I would feel better if I just DID the thing I was avoiding, or putting off…..and yet, I can’t do it.

Why is that? What is it about starting a task that seems so dreadful, so daunting, so much that we end up avoiding? Why is it that this occurs even for pleasurable tasks?

How do we just DO IT, at least start it, especially when we know we will feel so much better once we get the ball rolling?

Do you ever avoid tasks? Do you struggle to begin something? What works for you?