May 2015

So. Let them play.

The characters: a thirteen-year-old 7th grader and a ten-year-old 5th grader. Both cognitively impaired, to a degree. One with a syndrome. One with severe ADHD. Both with language disorders.

The setting: free play time, on the rug, with a huge box of Legos.

The two play together so well. They dig through the Lego bin together. They take turns digging, as both of their sets of hands don’t fit at the same time. Did you hear that? They take turns. They realize when they need to wait. Please tell me you get how big that is. Over the weeks they’ve developed favorite Lego pieces, favorite characters. They hand each other the ones they know the other likes. I know. It’s huge. Their favorite thing to do is find all of the characters and set them up. Sometimes making them look funny, with a mis-matched outfit, or two heads stacked on each other. They say to each other, “Hey Arianna, look at this!!!” They share with each other. They want to show each other things. They giggle loudly, together, when something is funny. Occasionally they call me over, wanting to show me something one or the other found or created. But mostly, they play on their own. Together.

Here’s the thing. I know there are people out there, various people of various professions, who would say, very confidently, “None of this is age-appropriate.” Such people would talk about how pretend play should be a thing of the past. They might add that a thirteen-year-old girl should be connecting with other thirteen-year-old girls, and that a ten-year-old boy shouldn’t be her go-to playmate.

But can say very confidently, that those people would be wrong. There are no “shoulds”.

Yes, pretend play fades out at a certain age in most neurotypical brains. And yes, most individuals with neurotypically-developing brains would connect with peers their own age. And yes, maybe those individuals wouldn’t sit together showing each other Legos, passing characters back-and-forth, and giggling about it.

But. These two kids don’t have neurotypically-developing brains. So why place neurotypical demands on them? And guess what else? While pretend play develops for so many kids in toddlerhood, it didn’t for these kids. So they’re catching up. Their brains are filling in the steps that they missed. These are kids who didn’t know how to connect. Didn’t make those friendships, didn’t have language until they were in elementary school. So, of course they’re still doing pretend play. They never had.

If I learned a new language right now, that I had never learned before, I’d be at the one-word and two-word stage. I’d sound like a toddler, trying to communicate, in telegraphic speech. Sure, maybe I could memorize a few phrases. But  that would be about it. You would never say to me, “Jen, you’re 27. You need to be speaking in sentences and conveying your thoughts in a much more eloquent way. You need to connect with other adults your age and talk with them.” It’s no different with my kids. They’re not going to magically skip developmental steps that everyone else goes through. And why would we expect them to?

To the people who expect them to “fit in” and participate in “age-appropriate” conversations and activities – the reason that they don’t is because they can’t. Because they’re not there yet. And maybe they’ll get there and maybe they won’t. But whatever happens – let’s just celebrate where they’re at. The new skills they’re developing and applying – it’s no less significant than a baby learning to point. It’s just happening at a different time.

So. Let them play. Let them script. Let them laugh. Let them be thirteen-years-old and need to learn how to use words and not push. Let them be ten-years-old and learn about compromising. Because, their brains need to. Because, their brains never did. Because, they’re learning. Because, they’re connecting. Far better than forcing them to sit and talk about things that they don’t understand and things that they don’t care about.

And if you worry about them not fitting in? They do fit in. Just maybe not with whom you expected them to. But that’s okay. We all make different friends. We all have different connections. The important thing here is that they do fit in. They have peers. They have playmates. And that’s worth embracing. That’s what matters.

Five-Minute Friday: Blue

I am linking up with the Five-Minute Friday crew for the first time today. I read their one-word prompt each Friday, and desperately want to make myself write about it, but I am still working on writing on demand, which is much harder for me than rather than writing in a moment of inspiration.

(Also I feel the need to disclose that this feels really really vulnerable for me to write! An unedited jumble of words and phrases from my mind, raw and real. But I’ll just do it anyway because of the whole “practicing what I preach thing” and all that.)

Anyway. Blue.

The colors failed me many times in the last two weeks. Often causing me to get stuck in my closet. Blue, usually such a safe color, felt too bold, too strong, and no shade was correct. Pink made me nauseous one morning and I could barely tolerate dark maroon. The drive home that day was torturous. Greens and blues and so much stimulation I couldn’t breathe.

Usually I crave colors, crave blues and purples and pinks. But on those days, I felt calmer and safer with monochromatics. Black shirt. Or black pants. Whites. Tans.

Historically, being stuck in a depression is when I need colors and can’t find them. Anxiety is when the colors are there, but swirling so fast I can’t breathe. (Metaphorically speaking, or something). That….chaos was different. The colors were there. And calm. But I didn’t want them. The world didn’t seem real and the world was too overwhelming and maybe it was just easier in gray and black and white right then. And nothing was wrong internally except the colors were just messed up.

Lime green thunderbolts were trapped in black holes.

Storms of black with red lightning bolts raged on.

Blues were twisted and turned, into tornadoes instead of oceans.

Sunglasses needed for shades brighter than pastels.

Hues were corrupted, a type of sorcery, ruining the pure.

So I fingerpainted brown flowers.

And have been finding ways to release and free my precious colors ever since.

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?”


“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:

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