Month

August 2014

What I’m Reading

I don’t usually never write blog posts that are links to other blog posts. Mostly because when I read those types of posts, I usually get overwhelmed at learning about all of these other corners of the internet that I didn’t know existed, and worrying if I’ll have time to read all of the links and the posts, and follow all of those authors, etc. But that’s just me and how I roll.

But I’ve been struggling this week to write, and what I have been doing is a lot of reading other things. So, I’m going to link to some of them. Maybe you want to read them, maybe you don’t, maybe you love this type of post, maybe you’ll skip right over it. It’s all good.

Things I’m reading (and re-reading) this week:

–> This post, “Parenting to the Lowest Common Denominator”, by Jamie Krug. I found Jamie recently through the blogosphere, I think through Lindsey, and am quickly going back through all of her old blog posts, loving everything she writes. This particular post, I have read and re-read at least five times in the past few days. It is so heartfelt and raw and honest and after posting it on Facebook, it’s clear that it resonates with others, too. The way Jamie acknowledges her daughter’s sensitivity and introversion is heartwarming.

–> A wonderfully real and inspirational article, called “29 Signs You’re Doing Just Fine (Even If It Doesn’t Feel Like It). My wonderful friend sent me this article Friday morning, knowing, as she often does, exactly what I needed at that moment. I’ve re-read this so many times. I want to print it out and keep it with me, always.

–> This flowchart entitled, “Should You Catcall Her?”, which was actually created by Playboy. Which makes me like it even more, because it uses language that might resonate with its demographic, meaning it might be effective. And it sure gets its point across.

–> “A letter from your introverted friend”, in which Becky eloquently conveys that which many of us feel from time to time but don’t necessarily have the words to express.

–> Not online, but I re-read The Secret Life of Bees for at least the 15th time this past week. It fills up my soul. I just love that book.

What have you read this week?

 

Dropping the rope

This summer, I spend time talking with one of our campers who refuses to walk away when another camper is upsetting him. “But then he will win,” he tells me. “I have to argue back until he accepts that he’s annoying me.” I explain that by walking away, the same message gets sent. Drop the rope.


One of our kiddos walks into a situation where another camper is, who triggers her. She tenses up, then takes a deep breath, and asks, “Can I please move to a different location?” She drops the rope.


I am losing consciousness and about to pass out. I fight it, I’m determined to beat it. But I’m losing. So I stop fighting it and let it go. Whatever happens, will happen. I drop the rope.


I’m in a moment of increased anxiety. A few thoughts and fears spin and swirl around my head and I am so tempted to focus on them, dig into them, pull them apart. And I do, at first. I think and spin and check and worry and try to push everything out of my head. But it just increases my anxiety. So I breathe. And I sit with it. I drop the rope.


This concept is new for me. But now that I’m thinking about it, I realize that it’s everywhere, in all of my life. At work, with kids, with friends, with loved ones, with myself. 

When you find yourself in a tug-of-war, there are two ways to handle it. You can pull and pull until you can’t pull anymore. Or you can drop the rope and let it go. And it’s a concept that it’s hard for….well, everyone, I think. It’s something we teach our kiddos all the time. Ignore, walk away, focus on a different thought, take a breath, you’re okay. And it’s so hard for them because they want to fight the anxiety, the meltdown, the annoying peer, the fear. And really, I can’t blame them. I want to fight all of those things too. Sometimes there’s a worry, “But if I’m not fighting, I’m giving in. I’m giving up. I’m losing.” Giving in is not the same as giving up. Surrendering is not the same as losing. You are still in control. You’re still making the choice. There’s a peace that comes by dropping the rope. Which isn’t to say that the trigger, the thought, the person, the situation goes away. But it’s empowering (albeit hard and scary) to take control of the situation and decide to let go. 

You know I love metaphors and analogies – they help me understand everything, my work, myself, life. So. If you find yourself dumped into a big pool of water, your instinct is going to be to panic. To flail, thrash, scream. You’re panicking and the more you panic, the more you fight, the worse your fear gets, the more exhausted you get, and you accomplish nothing. But if you breathe. If you lay on your back. If you float. You’re still in that pool of water. You might still be scared. But you’re giving yourself a breath, a lift. You’re accepting where you’re at, and you gain both physical and emotional strength by doing so.

Sit with it. Drop the rope. 

And gain strength.

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Moving in sync

“Yoga becomes a dance, a fluid movement through the ups & down of our life, a way to approach our life with creativity, a way of healing & health & a way to make space & nourish the Light within.” (Swami Radhananda)

I am going to attempt to put into words something that I feel, and therefore something that has no words. Which means this is likely going to make no sense. We’ll see.

Do you ever feel like your system, your unit of a body and mind, your person, is out of whack? That things aren’t in sync, things aren’t moving together? That’s something that I feel sometimes, but to describe it…well, I’m not sure. Imagine a time when you were stressed, or sick, or anxious, or sleepy, or just “off”. Can you imagine your heart beating at one beat but your thoughts spinning to another beat and you just don’t feel like you’re one? Like you’re a bunch of different parts inhabiting the same space but not flowing together? (Does that make any sense? And if someone can explain it better….comment away!)

So that happens to me sometimes. And sometimes it’s because I’m anxious or upset or stressed but also sometimes I think it just happens. Not because anything is “off” or “wrong” but because sometimes things just don’t flow together. Like if you and a bunch of people are trying to bounce basketballs at the same time. You might start off together but ultimately you’ll be bouncing at different speeds after a while. Just because things move out of sync. Or an orchestra playing while someone sings and sometimes the singer isn’t exactly on beat with the music.

When that happens, I feel disjointed. I feel my heart beating at one pace, my thoughts flowing at another rate, my blood pumping at a third rate, and it’s near impossible to focus on one, to know which to listen to. (As a side note, I think this is one of the [many] reasons I bounce my leg up and down. Sometimes I bounce it when I’m stressed or anxious but sometimes it just feels good. And it’s almost like if I focus on the vibrations of my leg jiggling, it helps the rest of my body get in sync and vibrate/move at the same beat. And that makes me think about stimming and of course our kids stim, because not only is it organizing and calming but it just feels good and it helps everything become one whole instead of a zillion different parts).

And yoga helps. I love yoga for 98123987 different reasons but one of my most favorites is at the very end, during savasana when I close my eyes on my mat and just feel ONE beat. One flow. One rate. One pace. My muscles, my breath, my thoughts, my blood, they are all moving in sync. It’s one of the most calming and grounding feelings there is.

And that’s what I wanted to try to say.

Feeling the feelings

“I’m so sad!” He sobs. “I don’t want to leave. I’m going to miss it so much!” Tears stream down his face as he clings to his mom, then clings to his counselors, then back to his mom.

It’s the last day of camp. And he’s heartbroken.

We started previewing the end of camp (Week 7) during the middle of camp (Week 5). Because it takes that long to preview, to process, to feel, to cope. We talked about it every day. And each camper’s response was different. Some ignored, some yelled, some hit, some cried, some became clingy and some became distant.

This little guy did a lot of the above. Some days he was super silly, some days he claimed exhaustion and refused to participate. Some days he got angry and hit.

But on this last day? He was just sad. And as he screamed and wailed about how much he didn’t want to leave, how sad he was, how much he would miss camp, my heart broke for him. Because even as staff, we feel that feeling too. Camp is not just special for our kids, it’s special for us, too. And as I heard him cry over and over again “I feel so sad,” I couldn’t help but realize how huge that was. This kiddo was not hitting, not shutting down, not fighting with other campers, not telling staff that he hates them. He was feeling his feelings. He was labeling his feelings. Do you see how huge that is?? So I felt sad for him. We all did. But in addition to that sadness (not instead of, not a replacement, we spend all summer teaching our kids that they can feel multiple feelings and that it’s okay, and so can we), I felt proud. He was labeling his feelings. He was feeling them for what they are. And that, is a major success.

Autism + Recovery?

I just read this article from the New York Times Magazine. Before you click on it, let me tell you what the title is: “The Kids Who Beat Autism.” Yes, it made my blood pressure increase before I had even read it. I get so defensive about topics like this. I’ve written before about this topic, about the issues surrounding the idea of “recovery” from autism, about the dangers of viewing autism as an awful disease that needs to be cured. (As a side-note, I do really appreciate that the article quoted Ari Ne’eman and gave some of the autistic adult perspective. I really, really appreciate that, a lot.)

There are many blog posts and articles already out in the blogosphere, many of which are written by autistic adults. And I can’t even imagine what it’s like to be autistic and reading about how the core essence of your being is something that should be changed or fixed (here is the blog post that led me to the article initially).

I am trying to be open-minded and see both sides. And I can sympathize, and try to understand, that if you are a parent of a child who is struggling, you would want to do anything and everything in your power to “fix” or “cure” that struggle. I can try to understand that if someone promises you “recovery,” you would do anything you could to get to that point. I can try to understand that the concept of “a neurotypical life” might have seemed much more enticing than “an autistic life.” 

Here’s the problem. And actually, there are a lot of problems. One of which is the whole idea of recovery in the first place, but that I babbled about a lot in that previous blog post. The issue I’m toying with right now is that there is no one autism. I believe in my soul (and this is not the time or place to talk about causes of autism or influential factors because I have not fully done my research and am not open to an argument on the topic right now) that there are many contributing factors to autism. I believe that there is no one cause. I believe that there is no one treatment. I believe that while there may be a cluster of similar symptoms, every case, every person, is ultimately different.

Take anxiety. Depression. OCD. PTSD. I don’t feel confident saying that there is ONE way to treat each of those disorders (or any other mental health condition, for that matter). Sure, there are best practices. Sure, there are evidence-based studies. Yes, I believe in cognitive-behavioral therapy. And dialectical behavioral therapy. And individual therapy and group therapy and residential treatment and exposure therapy and medications and alternative treatments and……the list goes on and on. But what works for one doesn’t necessarily work for another. I have many friends with the above diagnoses, and while some of them have some of the treatments in common, each person’s course is different. Because each person is different. And the causes are all different.

Not to mention – are we really “recovering” from those mental health disorders? I would argue in a lot of ways, no. Anxiety is in my wiring. It always has been. It’s in my family genetics, it’s in my blood, it’s in my brain. No, it doesn’t consume me. Yes, I’ve learned strategies to handle it. Yes, I’ve done the therapy route and the medication route and the alternative treatments. And yes, those things helped immensely. But does that mean that I no longer “have anxiety” or does it mean that I have learned strategies and tools to handle my innate wiring in the most effective way? 

I can think of several friends who dealt with acute bouts of anxiety or depression, got some support and help for them, and now don’t really deal with that anymore at all. Is that “recovery”? Does it mean the rest of us should aim to achieve that same goal? Or does it mean that everyone is different, that maybe some things are acute and some things are chronic, that some things are innate in our wiring and some things are situational, some things occur when many factors join together and some things seem to disappear as soon as one factor disappears? Who knows, and I don’t think it matters. 

I worry that settings our sights on autism “recovery” or “cure” sets up countless families to fail. Because they might have tried all of the zillions of treatments too, and…..their child is still autistic. But that doesn’t mean they’ve failed. I just want to hug all the parents and tell them, I KNOW you’re doing the best you can. Please believe me. You don’t have to prove it by making your child “recovered.” Help your child be the best version of himself that he can be – autism included. And of course – would some individual’s quality of life, or ease of life, be easier if they didn’t have _____ (insert whatever diagnosis or disorder)? Yes, of course. Might be easier. Might be simpler. Which is why I have such compassion for the fights we all take to help ourselves and our loved ones, whether it’s with a physical disability, mental disability, neurological disability. We don’t want things to be hard, and if we have the slightest inkling that we can make things easier, we want to. I guess it’s just that there are multiple ways to make things easier. There’s eliminating something, or there’s working to embrace something.

I don’t know how to end this. I don’t know what else to say. I’m afraid to post this. To potentially open up a can of worms. But I guess that’s the point, right? We have to talk about the hard things, the scary things. We have to disagree sometimes, have to debate and discuss. That’s how we move forward, that’s how we remove stigma from conversation topics, that’s how we grow and change.

So, here you go. Dialogue. Discuss. 

I put on my Superflex cape

One of our littlest guys came into camp very anxious today. 
“I do not have my bathing suit!” He exclaimed, as he hopped from one foot to the other, shaking his arms out as he did. 

We already knew this, as his mom had already called us, told us that he didn’t have his bathing suit, told us that she had previewed with him that it would be okay for him to get his clothes wet during Water Games, and that she had packed another set of clothes for him to change into after. There had been panic and tears from him in the morning and she said to reassure him that she would not be upset if he got his clothes wet.

Several hours and a lot of processing later, I found his group in line for the bathrooms. I stood back so I could listen to what he was telling his little friend. 
“Guess what happened!” He exclaimed to her, hopping again. “Mom did not have my bathing suit! So I do not have it! But I was brave! And I put on my Superflex cape and I can get wet in my clothes!”

He then looked up and saw me standing there, with a grin on my face. He jumped up and down, gave me a toothless grin, and said, “And….Jen K. feels PROUD of me!!!” I went over and gave him a high-five and told him yes, I sure was proud of him.

Each staff member that he came across, he relayed the story to. And I never got tired of hearing it. “I did not have my bathing suit! I was upset this morning! But I did not let Glassman into my brain and I did not have too big of a reaction! And I did not let Rockbrain into my brain either! I put on my Superflex cape to be flexible and now you are PROUD of me!”

And we were. So, so proud. 

Little snippits

Snippits of thoughts that I have tried to turn into blog posts but can’t, yet:

–Being a middle school or high school girl is hard. I so remember. It’s hard enough for a neurotypical girl, and when you add an autism or other social-communication diagnosis, it makes it that much harder.

–Endings, transitions, change are so hard. We as staff dread the end of the summer – and it’s that much harder on our kids. Who don’t necessarily have a happy transition back to school coming, who might not even know if they’ll make it through this year at school, who don’t have friends to look forward to seeing, who are dreading leaving camp, a place where they have safely been nurtured and gently pushed forward, and observed in a non-judgmental way, and supported no matter what they said or did. And so the transition behaviors we see…well, they just make sense. It makes sense that kids revert to old behaviors that had been extinguished. It makes sense that there is more stimming, more scripting, more tears, more anger, more hitting. It makes sense that there is yelling at friends and staff, trying to burn bridges that were made, because isn’t it easier to leave if you convince yourself there’s nothing behind to miss? We see it every year and it breaks my heart every year because I know that however hard it is for me, it’s a million times harder for them.

–I keep replaying a conversation that we had with one of our 10-year-olds the other day as she struggled through a meltdown. “What do I do when I’m not mad, I’m just sad?!?!” she screamed, as she sobbed and lunged herself at us, trying to find relief. “You have no idea how this feels!!! I’ve never been so mad and it’s all in my body!!” she screamed, as she shook and her teeth chattered. You could see the anger and sadness and despair swirling throughout her body. While we sat with her through it, we took turns calmly empathizing with her. “I do know how that feels,” I softly and slowly told her. “No you don’t!!!!!” I waited. “I do,” I said. “I hate that mad feeling. I know what it’s like to be so mad that the best solution seems to be to use my body to calm myself down.” She stopped screaming and looked at me. My co-worker and I spent the next hour or so empathizing and sharing bits and pieces from our own life, just tidbits that might be helpful, but all the while….my heart was breaking. Because we weren’t lying, we DID know how this girl felt. It’s just that we are able to internalize it. Keep it inside of us. And who knows, who’s to say that’s better? Who’s to say that walking around with panic and anger and despair inside of us is better than screaming and crying and hitting until it all comes out? 

Collaborative Problem Solving works. Like, really, really works. Think back to when you were a kid, or a teen, or even now at work in a meeting. Are you more likely to do something when you are told to do it? Or do you feel better, and are you more likely to agree and compromise when you’ve been able to share your thoughts and feelings, to a non-judging listener, and when you’ve been able to be a part of the solution? Our kids are brilliant. BRILLIANT. And sometimes they just need to be heard. And usually they’re right. Try to compromise with them, let them be heard, and you’ll be astounded at the difference it makes.

–And, a related, reminder: kids are doing the best they can. They really are. They might annoy you, push your buttons, frustrate you beyond belief, but if you see it through the lens of, “They are doing the best they can with what they have,” it helps. (And, as always, a connection to us: we are doing the best we can, with what we have, too.) Compassion, empathy, understanding. 

 

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