So raw

Today I am raw.
Like there is no outer layer of skin protecting me and everything is getting through. I’m hyper-porous and permeable and feelings, thoughts, memories, are all swirling around inside, filling me up up up and I think I might burst. Tears have pricked my eyes so many times today, threatening to spill over into sobs. It’s all too much.

As with the weather, the seasons, the tide, it just happens. I have an idea of a few contributing factors, but the factors are influential, not causal. Which is hard to accept, because it means accepting that this is my wiring. That I can’t control it. That I can’t make it start or stop.

So what do I do? Do I fight the feelings, the memories, the frustration, the disappointment, the fear, the sadness, the heaviness? Do I ride it out until it recedes (as it always does, but I always fear it won’t)? That’s the constant struggle – try to feel it and ride it even as I feel consumed. Even as it weighs so much I’m pulled down. To just…..be.

Your turn.

This is my first poll and I’m nerdily excited about it. So many people have shared thoughts about my blog and my posts. Different people seem to love hearing about different things, so it got my thinking that maybe there are certain topics people want to read more about, or less about, and maybe a poll is a good way to find out.

If I’ve done this correctly, you will be able to select as many or as few topics that you’re interested in hearing more about, as well as add whatever else you can think of. It’s 100% anonymous so even if you’re a lurker or I don’t know you in person or you don’t want me to know that you’re voting, no worries – because I can’t know who contributed.

Here you go, hope it works!

A Social Thinking Lesson

Disclaimer: As per usual, this post is completely unedited. And I’m tired. So it is likely hard to follow and doesn’t make sense. And I realize that I say that all the time but this time it REALLY is a mess. Like, for real. And it’s hard topic and post to write about coherently because it involves so much dialogue and inner thoughts. So, apologies in advance. But, hopefully the content and the ideas behind it come through. 

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One (of about a billion) things I LOVE about my job is that we deal with anything and everything. When situations arise, as they do with the kids we work with, we problem solve, and address immediately. And we’re lucky to be able to do that, in an environment that solely focuses on stress management, social competency, and self-awareness, without the academic demands. But more on that another time.

So when it came to my attention that staff members had overheard their pre-teen male (ASD) campers making jokes about rape and sex, we acted quick. That day I spoke to my boss, who is a clinician, who spoke to several other colleagues of ours, she got back to me, and I created a Social Thinking lesson based on another lesson from a colleague to do with the groups. The very next day, conversations were had with all of the participants and I did two groups on that topic. 

I don’t tend to talk about specific things I do with clients/students/campers in therapy or groups, but I felt really proud of this lesson and got a lot of good feedback from parents, staff, and most importantly, the campers themselves. So, I will share. 

I’ve done the lesson so far with two groups. To frame this: Both groups are five or six pre-teen or teenagers, one group is all boys and one group is all girls. All of the campers have social cognitive/competency deficits, and most of them have an Aspergers, ASD, or related diagnosis. 

We began with a discussion about what humor is. That was easy for them. I then took out my whiteboard and drew two columns, “Positive” and “Negative”. I explained that there can be positive and negative effects of humor, based on how it’s used, what the topic is, and who the joke is shared with. I was SO impressed at how quickly they thought of things. “Positive” effects that they thought of included: people will like you; make friends; get out of an awkward situation; avoid dealing with something hard; and “Negative” effects included: people think you’re a bully, people not wanting to be around you, getting in trouble with the law, getting suspended or expelled, getting a bad reputation. This was with pretty much no prompting. They had SO much to say. 

After we had flushed out that discussion, I introduced the idea of “deadly jokes.” The concept being, that there are certain topics that if joked about, almost always can have negative effects with friends, family members, teachers, colleagues, etc. I told them there were at least 7, and challenged them to come up with them. The boys group immediately came up with race/religion/nationality and sexual orientation. The girls instantly talked about disorder/disability, mental health, and sex. Overall, between both groups, our list included:race, religion, nationality, sexual orientation, sex, disorder/disability, mental health conditions, coworkers/colleagues/teachers/students, physical looks, violent crimes. Again – this was with almost no prompting. 

During the boys group, one of the guys said, “I know those are jokes that certain people would find offensive. But I would never joke about the topic that the person found offensive.” So we had a big conversation about perspective taking and theory of mind – that you can’t KNOW what a person is dealing with, you can’t KNOW that offends a person unless you know them inside and out – and even then, you can’t be sure. I got some rigidity and push-back, so we went through each category. “Can you ALWAYS know someone’s religion based on looking at them? Can you ALWAYS know someone’s sexual orientation by looking at them?” (by the way – that answer that I got was ‘yes, sometimes’ so we had a conversation about stereotypes and how they are often based in fact but can’t be our sole piece of information). We talked about things you can know by looking at a person and things that might offend them that are “invisible,” that you would never know otherwise. They were very interested in the idea that jokes could ultimately involve the police or authorities, and one of them brought up what would happen if you joked about a bomb at an airport. Another boy responded, “But you’d be joking!” So – another conversation about perspective taking, how a bystander or official wouldn’t KNOW you were joking, and there are protocols they must follow.

And then I brought up rape. Because that’s where this all stemmed from. The interesting thing? When I asked, “What about joking about rape?” they ALL vehemently shook their heads and said, “No no no! You can’t joke about that!!” but when I then follow up with, “Okay. Who knows what rape is?” not a single one of them knew. 

And that’s why we do these lessons. The things our kids say – it’s not that we let them get away with it, or make excuses, but so often they just don’t know. Some of the boys admitted they thought rape and sex were the same thing. Some said they heard of it and knew it was bad but didn’t know what it was. So we talked about it. We talked about why you can’t joke about it. And they all left with an understanding.

The girls group was different. One girl brought up how friends joke with each other about things that others couldn’t joke about – like girls saying to each other, “Omg, you’re such a bitch” can be joking and harmless or harmful depending on the relationship. Another girl referenced “Mean Girls” and how they call each other “sluts.” A third girl said that she would be really upset if anyone made a joke about mental health conditions. And a fourth girl shook her head and said she wouldn’t care about that, but if anyone joked about learning disabilities she would rip their head off. Again, a conversation about differences, how one size does not fit all, how each person is different. The girls role-played what they could do if they overheard jokes like those, if they bothered them, or if they didn’t. We talked about how it’s okay to not laugh at a joke, even if everyone else is.

These are things our kids don’t know. These are things that if they aren’t taught, they won’t learn. And saying to them, “We don’t say that!” or “That’s inappropriate!” isn’t enough – because they don’t know WHY. It’s meaningless and unclear to them. We have to clarify. Even if it’s uncomfortable, even if we want to maintain innocence. We have to. For their sake. 

 

The One With The Poochy Stomach at Yoga

Last Monday evening, I wanted to go to a yoga class that my favorite instructor was teaching.
My stomach was “poochy” (i.e., distended, sticking out, bloated).
I noticed that observation, then got dressed and went to class.

An anticlimactic, even boring story, right? But I couldn’t help but feel how powerful that moment was. There were years where that would never have been an option in my mind. My digestive system was completely messed up, my perception of myself and my body was messed up, and the quality of my days revolved around how I perceived myself to look, and how my stomach looked. Years ago, a poochy stomach would have been enough cause for me to put on a baggy shirt and sweatpants and hibernate on the couch all night. Last week? I put on my tank top and yoga pants, went to class, and sweat buckets, feeling strong and grounded and powerful the entire time.

Despite spending the past few years giving my digestive system all the TLC and healing it needs after years of misuse, disuse, and abuse, and making wonderful strides, I continue to have food intolerances, continue to have days where it all gets out of whack, continue to have times where my small intestine responds to food by ballooning out so far that I have to pick a bigger pair of pants to wear. And, I’m human, so I think I get to admit that I don’t particularly enjoy those times, that I still feel frustrated when that happens, that I don’t love my body every second of every day. (I don’t think anyone does, and I think that’s okay. And as a side note, here‘s an article that my wonderful friend Erika wrote, on that very subject, that I find truly validating.) BUT, the key difference between Then and Now is that it doesn’t ruin my day. I can concurrently feel uncomfortable, feel some dislike, feel discouraged, AND still go to work, enjoy my day, go out with friends…and feel a whole other range of positive emotions that are real and true and not tainted by dislike or discomfort. 

So I went to yoga, because Now my internal monologue was observatory rather than critical (Hmm. I want to go to yoga tonight. Oh, my stomach is poochy today. Ok, I’d better get dressed and head out). And it was one of those countless moments that I’ve had over the years of Now, where I have to stop and get a burst of joy because Holy crap, I am a different person. I am not the same person I was years ago, Then. I am free and I thought one day I’d get to this point but I am here, I’ve been here, and I will stay here. Any bumps in the road are not a return to Then, they are simply a normal part of Now.

And yoga was fantastic. And Katie, my teacher who I am honored to also call a friend, was reminded us to, “Do whatever you can do. Be wherever you are. Nobody needs a yoga hero.” And I was so in my body and so grounded and I want to go back in time and tell my teen and young adult self, as I have countless times during the years of Now, “Don’t worry. You’ll get there.” 

A hypothetical note to parents

[Ed note: I started to write this using "I" instead of "We", but it didn't feel right. We do everything as a team, we have been a team for years, and despite not having asked everyone if they share these thoughts, I am nearly certain that they do.]

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We are in Week 3 of our 7 week program. We see it every summer – Week 3 is when things shift. Kids are getting to know their peers better, the novelty has worn off, group leaders are getting into the nitty-gritty of social thinking development, kids are feeling more comfortable around us and in our setting, and, as we always say each year, “The honeymoon period is over.”

So we start seeing behaviors that we might not have seen the first two weeks. Refusal, noncompliance, anger, meltdowns. And we aren’t bothered by that. We expect it. We know that in a lot of ways, it demonstrates the kids’ comfort with us and our program. They are being themselves, allowing for vulnerability, and letting us step in and guide them through it. 

Sometimes a meltdown turns physical. We know that. Please know: you do not, ever have to apologize for your child’s meltdown or physical aggression. We know the difference between a tantrum and an autistic meltdown. We know this is a meltdown. A neurological storm, a complete inability to do anything except ride it out. Please know that we don’t think your child is being purposely defiant or difficult. We get it. We don’t think any different about you or your child post-meltdown. We aren’t upset if papers got torn up, if the walls were colored with markers, if water was purposely spilled. We are okay if we get scratched or pushed. Please know that in those moments, our focus is in no way anger or hatred toward what is going on. It is purely compassion. 

There is something powerful and beautiful about every single moment we spend with your kids. In the midst of a full-blown meltdown, complete neurological storm, a level 5 on the “volcano,” the powerful part is that we are able to be there for your child. To help them stay safe and regulate. To let them know, usually nonverbally, that they are not alone. That we are there, that they are okay, that we understand. It is powerful and beautiful to be with your child at his most vulnerable moment, when he has lost complete control of his words and body – and to know that we are entrusted to be his compass and guide him through the storm.

The moments we hold onto are not the aggressive ones. It’s the moments when we see him take that first deep breath, after an hour of shallow ones. When we can see the tension leave his face and body. When we see his core, true self, start to emerge again. When words return to him. When he calmly asks for a drink of water. When he looks right at us and asks us to please help him put his shoes back on. We don’t hold onto when he was screaming at us, telling us how much he hates us. Instead, our radar is on the moment when he is calm again, and happily asks us if we want to join him for ice cream. 

Please know that. We love what we do. We don’t judge. We adore your children. We are honored that you have entrusted them to us. 

The time that I didn’t (fully) pass out

The following is (as usual) completely unedited, completely unplanned, and a complete stream of consciousness. It also mentions fainting and throwing up. Just saying.

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I have almost a perfect record of having a vasovagal syncope (i.e. fainting) during any type of medical procedure. Procedure isn’t even the right word, I have (thankfully) not had that many procedures. More like: TB tests, blood draws, chiropractor appointments, gynecology appointments….you name it, I have probably fainted or thrown up during it.

So when I went to the doctor’s office today for an examination that involved a scope up my nose and into my sinuses, I knew the odds were not in my favor. As the doctor explained to me about the lidocaine and the scope, I already felt my body start to struggle. I told the doctor about my history and she very nicely said that it would be no problem, that she would have ice packs ready and she would recline my seat a bit. So I did okay at first, she was reminding me to breathe, and I was, but there’s just a stupid something that gets to me as soon as my brain registers “Holy crap there is something inside of me/going on with my body and I can’t control it and it’s gross/weird/not cool” and I felt that all-too familiar tingling of my hands and my toes and kind of at the back of my throat. I tried to breathe through it but the thoughts of “Oh my god what if this happens what if I pass out what if I throw up will I make it to the bathroom and oh my god this is making it worse I’m going to go down what do I do” kept coming, so for the first time IN MY LIFE, rather than trying to fight it on my own (because, you’d think after 987123987 times of this happening, I would know that it’s the anxiety about it happening that makes it even worse, and when I try to make it stop happening, it only makes it happen sooner), I was honest.

My eyes still closed, I calmly said, “I am going to throw up.” The doctor put a trash can next to me and very calmly replied, “Okay, go ahead right to your right.” She then reclined my seat even farther back so my head was deep below my heart, and she got me ice packs for my wrists and a cold cloth for my head. And there I was, allowing myself to be as vulnerable as possible, lying in the chair with my eyes scrunched shut, trying to breathe, cold packs all over me…..and I accepted it. I accepted that this is where I was, and I accepted that my vision was going dark and I knew I was safe and I knew that if/when I threw up or fully fainted, it would be okay, because I didn’t have to be in charge. I didn’t have to fight it.

I’ve never done that before. I’ve always fought it off, then desperately announced that I needed a bathroom, barely making it to the bathroom before my stomach empties and I pass out, then having to get myself to the sink, clammy and sweaty and exhausted.

I don’t know why this time was different. But I don’t think it’s a coincidence that the very first time in my life that I was able to stop it mid-way, before I fully went into darkness, was when I was proactive, and honest, asked for help and told it like it was.

And ten minutes later, I sat back up. And I drove home. And I was tired, and drained, but I was okay. It was so empowering to be able to stop it mid-way for the first time. And so empowering to be so vulnerable and have it be so……okay.

Conversation

“I love gymnastics,” she says, out of nowhere. “I want to try it again, I quit last year. It was too late at night.”

“I get that,” I say. “I get tired on school nights too. What is your favorite part of gymnastics?”

“The exercise,” she replies. I nod my head. “You like to be moving?”

“I want a flat stomach,” she responds. My heart skips a beat. No no no no. Please, no.

Tread carefully, I remind myself. “Hmmm” is all I can manage. She continues, lifting up her shirt an inch and pinching her stomach. “I do not want this icky fat on me,” she declares.

I think. She’s a wonderful, insightful, unique, verbal, chatty girl. She’s also 15. And a teenage girl. And on the spectrum.

I choose empathy. Even if my words are not processed, I know the feeling will be.

“I get that,” I say. She looks at me. “But you know what? It doesn’t matter. It doesn’t matter if there is fat on your stomach, or anywhere else.”

She is listening.

I continue. “I sometimes have thoughts like that. Many people do. But I remind myself… “

She interjects, “It does not matter! You are beautiful! It is what is on the inside that matters!”

I know it’s a script. I don’t care. The fact that those are the words she is pulling, in this moment, means that hope and belief and self love are all what she is trying to convey, and convince herself of.

“YES” I answer. And she moves on to a different topic, done with this conversation.

It’s a start.