Anxiety explosion

“It’s OPtimism. It means when you are optimistic.” I hear Tyler say.

“No. AUTism is different.” My ears perk up. I tune in.

“Do you have autism?” A third voice. Nick.

“Yep.” says the matter-of-fact OPtimistic (and autistic) kiddo.

I miss a few exchanges while I answer a very important Lego question from another group of kids playing. When I tune back in, Kayla is half-giggling, half-babbling.

“Autism means you’re stupid! You have a dumb brain. You have a cuckoo brain.” I catch her eye and I know, this is not her core. This beautiful, smart, hilarious fourth-grader doesn’t believe this. I know she doesn’t.”

I casually join the trio. “Kayla, what were you talking about? I couldn’t hear you from over by the Legos.”

She shrieks. “Nothing! I wasn’t talking about anything! I’m sorry I’m sorry I’m sorry! Just forget it!”

I try another way. “Oh, okay. I just couldn’t hear everything. Were you talking about autism?”

Another shriek. “Yes but I didn’t mean it! I was just kidding! I’m so sorry! I’m sorry!” Tears roll down her cheek.

Nick watches, fascinated. He is the one who has been asking kids for weeks if they have autism, trying to get a dialogue going. I think that maybe it’s his way of trying to understand himself. Because he is, certainly, autistic. Nick oh-so-helpfully says, “Oh, so you’re autistic and so is Tyler. That’s why you both have meltdowns.”

Kayla is quiet, and she looks at me. Tyler keeps building with his blocks. So, I answer. “Well, autistic kids can have meltdowns. But so can people who aren’t autistic. I’m not autistic and I’ve had meltdowns before.”

Kayla chimes in. “I have meltdowns sometimes! Really big ones where I can’t stop running in circles. It’s like a tantrum kind of.”

I continue. “So autism is not a bad thing at all. It just means that your brain is different. So some things might be easier for you, or harder for you.”

“Right,” says Kayla. “And you might have trouble learning or trouble making friends.”

“You might,” I reply. “But a lot of people have trouble with those things, and they’re not autistic. So if you’re autistic, does it mean you’re stupid?”

“No!”

“Nope. It doesn’t at all.”

Later, when we’re all finished playing, we go find parents. I check in with Kayla’s mom, tell her about our conversation. She’s worried. “I just don’t know what to do. She’s known about her diagnosis for over a year. And I think that often she feels good about herself, but sometimes at school….she just doesn’t. She knows she’s different, regardless of how high-functioning she is.” We talk a little bit more. Then I turn to Kayla. She’s standing, staring into space, tears rolling down her cheeks.

“Kalya?” I ask softly. In a flash she is on the ground, wedging herself on the floor, with a table and chairs in front of her. She’s sobbing. “I’m sorry I’m sorry I’m sorry! Everyone hates me because of what I said! I’m stupid and dumb!”

“Do you mean when you said kids with autism have cuckoo brains?” She nods.

“Ohhh. Guess what, though. Nobody was mad at you at all. Everyone knew you weren’t being serious. And I know you weren’t being serious. And I know that kids with autism are actually really smart.” she starts to nod, but another wave sets off and she lets out a shriek.

“No! My brain IS stupid! My brain is wrong! I AM dumb! I am so mad at myself for saying that!!!!!!” I kneel down, not too close, and say very softly, “What can I do to help you right now?” She says that she just needs to hide there and cry. Which makes perfect sense to me, truly. So her mom says, “Okay, Kayla. But soon let’s go home. And you will feel better. Right now you are worried about it, but when you feel better you won’t be.”

Her mom and I talk a little while longer, and eventually Kayla pushes the chair and table back and stands up. “Okay,” she says. “I am ready to go. Maybe when we get home I can cry some more in the dark.” She climbs into her mom’s lap and says, “hold me.” They rock and hug. I catch her mom’s eye, and her mom says to me, “Thank you. We’ll be okay. We’ll talk more about it when she’s calm.” Nobody knows their child better than a parent.

As I leave them, her mom is engaging Kayla in one of her favorite movement activities. Kayla is smiling, her body is relaxing, and she is calm.

————

My heart broke for Kayla, tonight. Because I know what it’s like. To believe something awful about yourself. And to have moments of clarity, but lose those moments when anxiety roars. To cycle back and forth, around and around, unable to let go of a thought. To not be able to trust the truth that you know in your calm moments.

But I think what we have to do is exactly what Kayla did, and does: allow ones we love and trust to help us during our storms. Be real. Let ourselves be vulnerable and cry and shriek if we need to. Know that we can cry in a dark room. Accept help from ones who won’t judge us. And listen to the truths as soon as our brains are quiet enough to believe them again.

To my dear friend, when you forget:

It is so easy, so damn easy, to assume that everyone else is normal and we are the screwed up ones. But in reality, there is no normal. There might be a more common, but not a normal. Just because you cry at times others wouldn’t, and get deeply affected by events others don’t, doesn’t mean something is wrong with you. The way in which you react to a tough situation isn’t good or bad. It just IS. and you get to own that, without  apologizing for it, without judging it.

When we apologize for how we are, how we feel, how we think, we are essentially saying, “something is wrong with me. I am flawed, to the point where I need to apologize for it.” (The exception being, if you hurt someone or hurt yourself, of course you apologize. But the reality is, you don’t hurt people that often. You just worry that you do.)

You get to not apologize for crying. For spinning. For feeling. You get to not apologize for worrying. For ruminating. Because it’s who you are, it’s your wiring. And just because others don’t do or feel those things doesn’t mean you are in the wrong. It doesn’t mean anything. It just IS.

The reason you apologize after breaking down, after crying, after being you, is because you feel shame. You feel that something is intrinsically wrong with you and you just did something that you shouldn’t have done. And you worry that by doing what you did, you have made yourself fundamentally unlovable. But try, just try, to embrace it. This is who you are. And you can trust yourself that the person on whom you just unloaded loves you because of you who are, not in spite of it. And don’t apologize. Because this is you, there are no other you’s in the world, and this person loves you and cares about you and how beautiful is that?

So. Do not apologize to me for venting. For coming into my office and breaking down. For emailing long strings of thoughts. For talking and talking until you’ve let it out. Rest assured that at this point in my life, I no longer expend energy on unhealthy relationships. Which means that if you’re a part of my life, it’s not because I feel obligated or because we are unhealthily intertwined. You are in my life because I care about you, and I want to hear you, to listen to you, to hold your pain when you can’t breathe.

And so, you just be you. However and whatever that means and looks like, and I promise you, I will love you through it.

So. I got married.

I’ve realized the joy of my wedding day is mostly beyond words. But I want to capture it, and so, the key points of what I’ve been thinking about over and over again:

I loved every minute of the day.
I really did. And honestly, I wasn’t sure if I would. I didn’t know what to expect, how I’d react to a busy, emotional day. I generally prefer to not be the center of attention, and try to deflect attention off on me. But on my wedding day, I embraced it. And I actually really liked it. There is something so special about knowing that every single person in a room is there because they love you.

I wasn’t unbearably anxious.
In the two weeks leading up to the wedding, I was. I was overwhelmed, there were a million appointments and details and things to finalize. But once the weekend was here, it all melted away. I had butterflies, but not anxious stormy harmful ones. Just springy, happy ones. The morning of my wedding, when texting with a close friend, I told her that I was oddly calm. She replied, “I don’t find that odd. I think you are in the moment.” and that was exactly right. I was so present during the entire day.

I felt beautiful.
Historically it’s been hard enough for me to feel neutral about my body, let alone positive. But on this day, I felt gorgeous. The entire day. I loved my dress, I loved my hair, my makeup, jewelry, shoes. And I was in love and I was happy and I was excited and all of that combined made me feel angelic and light and just…beautiful.

I ate everything.
So many people had told us that you don’t get to eat at your own wedding. Well, a certain husband of mine was not having that! We had selected the food, we loved it at our tasting, and he was determined we would enjoy it. So I tried all of the hors deorves, I ate my salad, my dinner, and my cake. And it was damn delicious.

I am so in love.
One constant comment we got from guests at the wedding is about how we looked at each other the entire evening. People said it was so clear how much we love each other, so clear that we were so locked in and focused on each other. And I love that. We talk about our love all the time, but to be such a big love that it emanated from us into the room was an indescribable feeling. In looking at the pictures we just got back, I can see it too, in our eyes, and in the ways we hold each other and look at each other. We are so, so lucky.

And now, a rare picture:
jen-jeremy-w-1237

Wedding babbles

So.

I am getting married one week from yesterday. Everyone keeps saying, “Are you excited?!” (except those closest to me, who know to just ask, “How are you feeling?”) and the short answer is, yes, of course. If I wasn’t, we’d have a problem. I am very excited. But I’m also overwhelmed. And I haven’t totally known how to put it into words until the other day when a new colleague overheard me trying to explain it, and she came into the hall and simply said, “It’s a constant state of hyper-vigilance.” Yes. Planning a wedding and getting mentally ready for it is exciting. But it’s also draining. For some people, a lot of something good isn’t draining. But for others, like yours truly, a lot of anything is draining, whether it’s a positive “lot” or a negative “lot.” I think I had gotten myself stuck in feeling guilty. I’m happy about my wedding, I’m excited about my wedding. So I shouldn’t feel overwhelmed or exhausted or sick of talking about it. And if I do, what does it say about me? It must mean I’m flawed, or something is wrong with me.

But the truth of the matter is that, like everything else, this isn’t black and white. It’s not one feeling or the other, it’s not right or wrong. It’s and. Like we always teach our students, and work to teach ourselves: we can feel more than one feeling at once. There is no right way to feel. And when I take a step back, I realize that all of us – my parents, Jeremy, his parents, have felt a myriad of feelings. Excited, anxious, worried, overwhelmed, stressed, elated. And they’re all good. And okay. And expected.

This is so surreal, I keep thinking. Not surreal that I’m marrying Jeremy. We knew fairly early on that this was it. (Fun fact: our recessional song, after the ceremony, is the song that holds such meaning to me, as it’s what I was listening to when it hit me for the first time – Oh my god. I want to marry this man. I want to spend the rest of my life with him.) But more so surreal when I think about my life as a whole. Sometimes I take a step back and look at my life, and I have my stuff, everyone does, but overall, I have my shit together. More than together. And for many years, my shit was…..well, very NOT together. And during those days and months, I had to focus on putting myself back together, piece by piece, figuring out who I was. I learned to like, and even love myself, but that was my focus. I certainly couldn’t ever see a future in which not only did I love myself, but I wanted to open up and trust and give myself to someone else. It just wasn’t something I could imagine.

I think that younger Jen, who lives within me, is the one who is feeling surreal. Present-day Jen feels like, Yes, this is exactly what is happening, of course it is. But it’s that old me who is astonished. Amazed. Proud. Relieved.

I am madly in love.

I am marrying my best friend, the man of my dreams, the most incredible man I could have ever hoped to find.

I am happy. I am lucky.

I’m getting married.

This morning I got stuck in my closet

Not physically.

This happens from time to time.

Here’s what happens. I go to bed with an idea of what outfit I’m going to wear to work the next morning. Most mornings, as long as I’ve picked out the outfit in advance, I wake up, shower, put on the outfit, and that’s that. Back when I didn’t plan out my outfit, I would stand there for minutes, just paralyzed, knowing I had to decide what to wear yet not being able to decide. So now, I plan.

But some mornings, I put on the outfit that I picked out, and even though I’ve worn said outfit multiple times, and love the shirt and love the pants and love the shoes, I put it on and HATE it. For a variety of reasons. It might be too big too loose too small too tight too itchy. The mirror might be on my bad side that morning and I see my body change in front of my eyes, knowing that’s not truly happening but fighting it nonetheless. And sometimes it just doesn’t FEEL right. And I don’t know how to describe it other than that. An outfit I love and have worn just doesn’t work. Sometimes it’s because the color isn’t right. Sometimes I crave colors, and am repulsed by others. Sometimes I desperately need to wear green, other times if I put on a green shirt I get nauseous. Purple is one of my go-to colors but some days it’s the exact opposite of what I need. Having done a bit of studying over the years of chakras and color theories, I do believe that we gravitate toward certain colors for certain reasons at certain times.

When any of those things happen, I get stuck. I freeze. I often put on shirt after shirt, pants after pants, outfit after outfit. Often times the more something feels wrong, the more everything else feels wrong. Everything keeps feeling too big, too tight, too itchy, too light, too heavy, too nauseating. And then I realize that the time is ticking away and oh crap I needed to leave five minutes ago and the more I realize how I’m running late the more my heart pounds and the more anxious I get and the harder it is for me to put on clothes. And then sometimes I say Just do it and I pick something and I get to the door of my apartment but then I think But what if I should’ve worn x, y, or z? And then I’m back in my bedroom starting all over again. But what if I feel “wrong” all day and then I will have a bad day and really I should’ve just changed my outfit and tried again? And that’s when I have to remember my tendencies toward obsessing and compulsing and need to (gently) just get myself out of the bedroom and out the door.

It doesn’t happen often. But when it does, it is not a good feeling.

Anyone else ever get stuck in their closet? (Literally, figuratively, take your pick.)

A story

Her body parts were fighting.

They had forgotten how to work together, and they were all complaining. All trying to get the most pity. All trying to make it clear that they were the root of all of the problems.

They couldn’t even remember how they started fighting. It just happened sometimes. The harmonious friendship they had would start to unravel, bit by bit, until rather than working as a team, they were all enemies. Pulling, fighting, arguing.

Blood wasn’t flowing at the same rate that Heart wanted to pump. Head pounded at an entirely separate pace. Right Eye hurt. Neck formed a rock of tension. Lungs wanted to breathe at its own pace, and not communicate with Heart or Mouth.

And so, Brain was exhausted, and Core was exhausted. Listen to each other, they pleaded. Work together, they encouraged. You are a system, they reminded.

But the parts would not listen. And now they had all become so stubborn, that even if they wanted to unite once again, they didn’t even remember how.

Brain and Core had one last idea. Let’s go to yoga, they wearily suggested. Well, the parts started to argue. But Brain and Core mustered all of their energy and put their foot down. We are going. Get into the car, they said, the way you’d talk to a small child throwing a tantrum.

And so, they went to yoga. And despite their determination to work on their own and not be team players, Heart and Lungs began to talk. And as she moved from pose to pose, flowing her body through sequences, Legs had to talk to Arms, who had to talk to Hands and Wrist. Because if they didn’t, she might fall, or get hurt. And while they didn’t have much respect for each other at the moment, they did respect and love her. And Heart and Lungs began to coordinate their breath with Legs and Arms. And Neck relaxed as Lungs exhaled. And they all noticed that she looked calmer than she had in days, and that made them feel good.

By the end of class, everyone had put aside their stubborness, animosity, and negativity. They had decided to move on and forgive each other. After all, they couldn’t even remember what they were fighting about. They couldn’t even remember why they decided to go their own ways. They felt so much better working as a team, flowing as one unit. And more importantly, she was happy. Brain and Core relaxed for the first time in days.

And they all walked out of the studio, together, as one.

Google Glass: Brain Power for autism

My dad sent me this article, knowing I would have thoughts. The article is called, “Can an app for Google Glass offer a path out of autism?”

I become suspicious, immediately, of anything promising to “cure” or “fix” or “save kids from” autism. So, my defenses were immediately engaged.

I have read a little bit about Google Glass over the last year or so, but am certainly no expert on the technology, nor do I claim to be. But, the idea, at least as I understood it, is this app (called “Brain Power”) would be used to encourage autistic children to make eye contact. The app flashes cartoon characters on the screen where another individual’s face is (e.g., a parent), to “lure” their eyes up to the individual’s eyes. Essentially, tricking them into making eye contact. Once they look up, they receive points, and the character is taken away.

First of all – I am a huge fan of technology. Almost every single one of my students use it for learning in some form, and I believe its implications are limitless. So my issue with Brain Power is not the fact that it’s technology. In fact, I believe that Google Glass in general could absolutely be added to the arsenal of tools that benefit our autistic kids.

Several things bother me. For starters, I have said many times, and it is no secret that I believe, that autism is not a “condition”, is not a “problem”, is not an “epidemic.” And I have a lot of reservations for a company who operates with this fundamental belief, as Brain Power seems to. Autism comes with its challenges, but so does neurotypicalism.

The next issue is what Brain Power is aiming to do. Is it REALLY aiming to improve social communication, and social thinking skills? Or is yet another behavioral approach, aimed at reducing certain behaviors? Because I am thinking the latter. I believe in Social Thinking, in teaching social communication, at breaking down the fundamentals to help our kids understand social interaction. I teach it every day of the year, and I’m all for it. But teaching kids how to interact, why to interact, is not the same as a strict behavioral approach. We are not requiring our kids to do something without helping them understand why.

Another app digitally accentuates the person’s eyes to attract attention, because autistic children are known to focus on the speaker’s mouth.

Well, I can’t tell you how many autistic kids and adults have expressed that they can’t make eye contact, because it’s too damn painful. We actually teach kids to look at a mouth, or a nose, or an ear – we teach them to fake it, that no, we aren’t going to force them into making direct eye contact, but by looking in the general direction of someone’s face, they are still showing that they’re listening, paying attention, showing interest. Yes, there are kids who truly don’t understand the concept of why they would need to look at someone’s face to begin with. So we start there. But it’s not looked at as a problem to be fixed. Of all of the zillions of challenges that come with autism, I have never, nor do I know anyone who has ever, thought, “Oh! You know what? A really important thing that we need to fix is make all of our kids make eye contact.” Because it’s just not crucial. Communicating wants and needs is. Coping strategies for anxiety is. Making the world functional and accessible is.

And I wonder, why is Brain Power so intent on increasing eye contact? Is it truly because they think it’s better for the autistic kids themselves, for the kids’ quality of life, or is it to try and fit our kids into a mold of “normal” that in reality doesn’t exist? Do their beliefs come from the same people who believe that we should eliminate scripting and stimming? Who are they really looking to benefit here?

The article concludes with:

Attending were Sara Gaynor, a special-education teacher, and her 11-year-old son, Sean. After trying out Glass, Gaynor said her son told her: “They’re awesome. I think those glasses make me smarter.”

Later, Gaynor recounted how Sean jumped up, arms outreached, and told her, “I think I am breaking out of an autism prison!”

I don’t know Sara Gaynor. I don’t know her son. I do believe that he liked the glasses. Like I said, I think a lot of kids would. I think the glasses hold great potential. But the way in which this quote was written into the article makes it sound like glasses = smarter, because autism = dumb. And Sean’s quote at the end? I don’t know how much I believe that this boy truly said those words. But if he did, it breaks my heart. Because it means he was raised believing his autism is a prison. And what implications for any autistic kid reading that article – to plant the thought in their own heads that their neurology, their wiring, is something so terrible that it should be compared to a prison.

I need to do more research, I need to read more about the company and their studies and their beliefs. Again, I do not claim to be an expert on this, to understand all of it, to fully know every detail about how the app would work. But at first glance, I am more than a little concerned.