Two Days Off and the Cell Model Debacle

J had Thursday and Friday off last week (NDEA/NDU Teacher’s Convention for Fargo Public Schools). J also had a “first draft” of his 3-D cell model for science class due Monday. I had a flight to New Jersey Friday afternoon to visit a friend from grad school, so Thursday I did a frantic brainstorm for ideas. Pintrest had some good ones, but they were all “edible” versions of the 3-D cell–something J’s teacher had specifically the class NOT do on the rubric.

I looked online for more ideas (because, let’s be honest, whether your kid’s autistic or not, projects like these tend to end up really being parent projects with some kid participation), scoured my house with things we could pass off as organelles and made a list of things to pick up from the dollar store and Hobby Lobby. We spent the entire Thursday rounding up the cell and doing as much construction as needed for the “first draft.” Because it was me that came up with the body part ideas of the cell, I wanted J to do as much of the rest of it as possible. Here’s some pics of the construction process. J really enjoyed the “crafty” part of it. It’s kind of crazy for me to see him get into this–to see him get over so many of his sensory issues or motor issues (the ones that have plagued him for so many years of his life). He could pull the trigger on the glue gun. He made slime–and then touched it! It may not seem like a big deal but for a kid who has a lot of sensory issues this is a big deal. As we trucked along, I really realized how great of a project this was for J. We’ve been studying the parts of a cell for about a week and a half now. The nucleus, mitochondria, vacuoles, cytoplasm, endoplasmic reticulum–all of these things were just words to memorize. When he tried to fill out the diagram of a cell he couldn’t see how all of these words corresponded to squiggles, dots, and lines on a page. Building a 3-D cell is visual. It’s tactile. And this is how J learns things best. For the first time he understood what cytoplasm (the fluid of the cell) was. He finally understood the concept of fluid.

Mixing up the slime. He’s gotten really good in the last year following a recipe.

This is the most amazing to me. Playing with the slime.

Just because he’s touching it doesn’t mean he doesn’t think it’s disgusting.

If you’re wondering about all the bandaids on J’s fingers, he has a compulsive picking disorder, dermatillomania, where he picks his fingers so badly until they bleed :(. It could be because of his anxiety, or autism, or both. We’re not sure.

Painting the nucleolus

Our 3-D cell! Cake pan (cell wall), sparkle blue foam (cell membrane), balloon (vacuole), skinny blue beads (mitochondria), wikisticks (golgi body), pink ribbon (rough endoplasmic reticulum), blue pipecleaner loops (smooth endoplasmic reticulum), homemade pink slime (cytoplasm), foam ball (nucleus), smaller green foam ball (nucleolus), green marbles (chloroplast), tiny pink beads (ribosomes).

I headed off to Jersey to enjoy my mini vacation while Steve held down the fort at home. I left everything in place so all Steve had to do Sunday night was to help J do a finally assembling.

And then, Sunday night, I get this text from Steve:

“We have a little cell model problem”

Everything was sinking into the slime. Steve and I were going back and forth over the phone on how to solve the slime problem. We decided that it was just a “first draft” we’d send it “as is” and wait until I came back Tuesday morning to see it and figure out a solution. Steve pulled all the parts out of the slime and apparently it survived the “first draft” inspection. Apparently J was pretty excited to show off his cell creation too.

The cell is due tomorrow and Steve is still making some last minute adjustments. It seems like with J or things related to J we are always trying to find those last minute adjustments. But as I keep trying to remind myself–through the crazy stressful times–that we always figure something out. It’s usually some improvisational last-ditch effort, but it works out. We figure out the homework, we figure out some new behavioral strategy that will tide us over until the next behavior shows up, we figure out how to communicate with him better.

Small steps, always. Sometimes they’re so small you don’t even notice.

As I side note, I have to share my proud momma moment of the last week! This week I was scrolling through my running app and found J’s times for the past month. Of course, with J and running it’s adjustments, practice, then more adjustments–working on mental stamina, working on form. I feel like we’re still figuring out this running thing even since after the XC season ended. I haven’t been watching the week by week changes, but when I looked back at the past month it’s amazing the little things that change along the way:

J’s Running Rates:

Sept 4: 1.39 miles (Pace: 11:44 min/mi)

Sept 5: 2.46 miles (Pace 11:39 min/mi)

Oct 19: 1.44 miles (Pace 10:08 min/mi)

Oct 22: 2.4 miles (Pace 9:42 min/mi)!!!!!

I’m so proud of this kid!

Taylor Swift, Hipsters, and Feeling Understood

Me and my W, off to the concert.

Last Monday, while shopping at Zandbroz, (the best little bookstore/place for funky eclectic gifts and décor in Fargo), someone in the store switched up the music and suddenly I heard Ryan Adams strumming and singing Taylor Swift’s “Bad Blood ” above my head.

It was early afternoon and the store was pretty dead. I placed my merchandise on the counter and decided to make small talk with the cashier. As the cashier swiped my credit card, I asked, “So do you sell the Ryan Adams 1989 album too?”

“No,” he said turning bright red under his grizzly hipster beard. “We don’t sell the music we play in the store.”

“Oh,” I said, and slipped my card back into my wallet.

“I just put it on in case she came into the store,” he said sheepishly.

Because she was in Fargo, just hours away from going on stage in the Fargodome. And she, Taylor Swift, has power to make even hipsters blush.

I have to admit, 35 year-old me would probably blush too if she walked into the store just then. I was sort of embarrassed of how excited I was to see her in concert that night. We had two tickets to see Taylor Swift, one with W’s name on it. (Steve and I were lamenting the fact that we should have gotten a third—that we could have both taken W). The world doesn’t revolve around W very often—or at all, really.

Steve had this ongoing negotiation with W weeks up to the concert. “If you take me instead of mom, I’ll take you out for ice cream after.” Then he’d up the ante, “If you take me instead of mom, I’ll give you $50.”

“No way!” she’d say, eating up the teasing and attention. (Let’s be honest, it’s kind of fun to be fought over). “I’m going with mom. It’s a girl’s night.”

I was secretly relieved that she wanted me to go with her. She tells me all the time that she wishes we’d do more things together. Once every couple of months we’ll go to downtown Fargo and peruse her favorite shops—Unglued and Ode Cache. A few weeks ago I promised her 10 minutes of us time a day—No J involved. But even that’s hard to make happen sometimes. I’m afraid one of these days, she’s going to just want to give up on trying to have a “girl’s night.”

We’ve been reading the book Wonder by R. J. Palacio (a book about a family and friends and a boy with special needs named August) and all of my guilt of “not being there all the time for W” came out again once we reached the first chapter from the character Via’s point of view:

“August is the Sun. Me and Mom and Dad are the planets orbiting the Sun. The rest of our family and friends are asteroids and comets floating around the planets orbiting the Sun.”

J is the sun in our family.

“I’m used to the way the universe works. I’ve never minded it because it’s all I’ve ever known. I’ve always understood that August has special needs. If I was playing too loudly and he was trying to take a nap, I knew I would have to play something else because he needed his rest after some procedure or other had left him weak and in pain.”

W has to change her every aspect of her life to consider J’s needs.

“Mom and Dad would always say I was the most understanding little girl in the world. I don’t know about that, just that I understood there was no point in complaining…After you’ve seen someone else going through that, it feels kind of crazy to complain over not getting the toy you had asked for, or your mom missing a school play.”

“So I’ve gotten used to not complaining, and I’ve gotten used to not bothering Mom and Dad with little stuff. I’ve gotten used to figuring things out on my own…If I was having trouble with a subject in school, I’d go home and study it until I figured it out on my own. I taught myself how to convert fractions into decimal points by going online.”

W nodded her head beside me in silent Amen confirmations.  As J sat on the left of me and W on my right I could just feel from her that for once someone in her life actually knew what her life was like. That her mom spends way more time with her brother than she does with her.

And that’s why I was so relieved that she still picked me to go see Taylor Swift with her.

We walked into the Fargo very much unprepared. I was not a hip teenager and I am definitely not a hip mom. There were little girls and teenage girls who were wearing twinkle light tutus and girls with homemade lit-up posters. We came with nothing.

I didn’t know what to expect. I know about Taylor Swift but I don’t know anything about Taylor Swift, but after the two hour concert W and I had this amazing experience with her and each other. Every seat had wristbands taped to the seats (except mine and a few other seats around me. The girls behind me had hoarded wrist bands and had them stacked to their elbows. I’m just glad W still had one taped to her seat). And when Taylor came out with her first song, all the wristbands lit up at the same time. W thought that was the coolest thing on the planet. Score for Taylor Swift. She knows her audience, and it sounds silly but that little rubber wristband made W feel part of something huge.

And at the same time, Taylor can make you feel like it’s just you and her in the room. Like when she started talking to the audience about how we need to encourage each other and be nice to each other. That girls have to stick together because the world is already hard enough for girls. That everyone in the room is “good enough,” no matter what someone says about the things you like or how you dress. Or how to resist the urge to compare the hard parts in your life to the best parts in someone else’s. I even got teary when she said, “You’re not going nowhere just because you haven’t gotten to where you want to be yet.” I know she gives this speech to everyone on her tour, but still. She made it seem like she meant it.

(This is from a concert in Manchester park. Just to give you an idea of her speech)

W was eating it up. I watched her watch Taylor (nodding her silent Amens again) and I realized there is a whole little world inside of that girl that I won’t be able to understand sometimes and may not be able to reach. Of course, when Taylor sung “Fifteen” I realized there are things that I will know what she’s going through, but W’s little world growing up with a brother with autism is something I will never understand. I’m glad she can feel heard or understood sometimes, even if I can’t do that for her in the way she needs it.

I tip my hat to you Taylor. You are an amazing entertainer. You know your audience. You know how to make everyone there feel important. Thanks for letting me and W have that much needed girl time together.

And I hope you made it to Zandbroz and made that hipster’s day!

Really, a spectacular show. I mean, we were in the nosebleeds and we could still have the “full experience”

W discovering her wristband 🙂

Little Changes and a Step Closer to Empathy

Fall is in full force here in Fargo. J insists that our fridge is stocked with chilled cider and that every morning starts with hot chocolate chip muffins. He has set ideas about these things.

I insist that J looks for the changes in the trees as we walk to the high school for XC practice. Fall is by far the best reminder for me that little changes happen every day. The way that the tops of a maple catch crimson one day and in a few more days the fiery red has spread to the next tier of branches and then the next week a new tier catches fire. When I watch the trees I’m reminded that these things take time and that most changes aren’t baptisms by fire. They happen moment by moment. Trees don’t turn in a day, or even at the same time. J and I talk about this every day when we walk to practice. We make a game of finding the new things.

This week we’ve experienced little shifts in the J world. When J gets out of school his para and I have a little “2 minute replay” on how the day went. One thing his para mentioned this week was how math is becoming a struggle for J. He’s having a hard time organizing and executing the multiple steps now required to make it through a problem. My heart sunk when I heard this. This is the one thing J has always been able to do since a toddler. It feels like sometimes we’re starting to lose some of his core strengths. And let’s be honest, math isn’t my core strength.

“He’s doing really well in Language Arts though. He’s doing really well in comprehension. He had no problem with it on his last test on Thunder Cave,” his para tells me.

What? Reading Comprehension? When did this switch happen in his brain? This is something he’s struggled with his entire life.

One switch I’ve noticed this last month is that J’s been making progress socially. I notice it as we sit in the car waiting to walk up to practice. He’ll open the door and yell out, “Hey L! I hope you have a great weekend!” or “Hey, K! I’ll see you tomorrow!” No Chevy talk (see this post). 100% appropriate, on topic, short and sweet interactions.

Friday was J’s birthday party and J was more than excited for it. He just went ahead, asking kids on his own if they wanted to come to his party. We’ve done a movie night for every birthday for as long as I can remember. It’s the easiest for someone who struggles with social interactions. You spend the first half hour eating pizza while kids trickle in, then you start the movie (which is usually over an hour), then you eat cake, then parents arrive for pick up. It’s the ultimate autism party (or first date). You get to hang out with someone without actually have to interact, and both sides usually end up having a good time.

This time we tried something different. We held a karaoke party instead. Eight stellar kids from school came over to eat pizza, sing, eat cake, and jump on the trampoline. When the last kid left Steve and I were floored. How did that just happen? We had a successful party with successful social interaction. Sure, J was his quirky autistic self, but he took turns with karaoke, listened to other people sing (without getting impatient or complaining about the song choice which is what he does when we do it together as a family). Once again, no Chevy talk.

Seriously, some of the best kids on the planet. If you think the world is falling apart, you should meet these kids. They’ll blow your mind.

Love the look on J’s face.

The next morning J was relishing in the post birthday glory, but the XC team had a meet in South Fargo and I thought it would be a great opportunity for J to support his teammates. Keep the positive interactions happening, right? After breakfast when I told him that we were going, he told me flat out, “No, I don’t want to go. I don’t want to do that.”

I asked him how he would have felt if none of his friends came to his party. “They have to come to my party, they’re my friends,” he said, almost as if they had no choice in the matter. I told him that he had to go cheer on his teammates because “they are your friends and they expect you to come.” He still wasn’t happy. After all, the world revolves him and we do things the way he thinks they should be done. Because autism.

We showed up at the meet and the middle school girls ran first—in fact, one of the friends who showed up to the party the night before was there. He cheered out of obligation. Only because I told him to. His heart was definitely not into it. In fact, he kept asking for the Gatorade we brought along, (just in case) because it was supposed to be hot that day. He kept asking for it (very loudly) as these poor kids were running by, thirsty and exhausted. I had to explain to him how rude it was to ask for Gatorades in front of runners who were running but he didn’t buy it. He was thirsty and that’s all he could think about. Himself.

The boys at the starting line. Watching them gives me those nervous race day butterflies!

By the time our boys ran, J was very impatient. He wanted to go home but I insisted we stay. He cheered on the boys just like he did the girls—a halfhearted effort, but he was there, doing it. Because I kept saying, spelling it out to him that “when we are friends with someone, we are there with them. Physically with them. They see your body here and they know that you are their friend. Just like your friends were there, at our house, for your party.”

At the end of the race we met up with our small group of middle school racers as they were choking down their water. They were genuinely excited to see J there. They kept saying over and over, “J, we’re so glad you came to watch us run!” Sweaty high fives all over the place. And J picked up on that because he’s starting to read—understand genuine-no-strings attached-no ulterior-motive-emotion. It was the first time all morning he was glad to be there. The meet was still about him in his brain—I know that—because seeing them happy made him feel good about himself (yes, it’s still very selfish) but it’s a step closer to empathy. It’s a step closer to understanding the people in the world around them.

J cheering on one of our runners.

I think of his para’s comments on reading comprehension. I’m not sure why it’s improving. Maybe it’s all the books we read every night. Maybe it’s the reading comprehension app we try to use every day. Maybe it’s a combination of things. Life experiences—having friends come over, being there for friends, maybe that’s helping him understand things better. There’s a strong relationship between the two. More and more research is coming out that kids need to be taught empathy—especially boys. They don’t necessarily just “pick it up.” There’s also research coming out that reading—especially fiction—helps people develop stronger feelings of empathy. As Atticus Finch says: “You never really understand a person until you consider things from his point of view… Until you climb into his skin and walk around in it.”

We’re not ready to walk around yet, but we’re getting closer. Being in the same space is a start.

Whatever is happening, we’ll take it. Even if it means we’ll be working more on math…

Bildungsroman

“Blidungsroman.” “Coming-of-Age.” “Novel of Formation.” “Growing Up”

J the nugget. A perfectly beautiful, healthy, 8 lb 5 oz little boy. Who just happened to ace the APGAR.

J is 13 years old today and officially a teenager. It’s always been uncharted territory with him. He’s always been my mystery child. We’re always trying to figure out what we can do to make him comfortable and safe or what we should do to make sure he can have the best learning experiences possible. Why does he do the things he does? Why doesn’t he experience and feel the world the same way we do?

But now, at 13, we’re starting a different type of uncharted territory.

Our society eats up coming-of-age stories. YA stories are just dripping of wonderful, painful, angsty material. Go into any Barnes and Noble and you’ll see a good third of the store filled with these novels. They’re big money makers. They’re good blockbuster movie makers. Because even adults come back flocking for “coming-of-age” stories. I’m not sure why we still find them appealing. Because our own angst wasn’t angsty enough? Because there’s an underdog to cheer for? Because finding oneself is the ultimate payoff? Because we still haven’t found ourselves yet?

I know this story is going to be a doozy. Teenage life is hard. My teenage life was hard. All of those things like fitting in, boys, trying to find independence from my family, trying to find out what I’m good at so I know what I want to be when I grow up. Hard stuff.

For J it’s going to be even more than that. Going through those things with a body that is oversensitive to everything all the time but it’s now changing and growing and hormonal. Hormones are hard enough when you don’t have autism. Or how about having no clue about the basics of social interaction, let alone the secret languages and nuances of teenage communication? It’s going to be wonderful, painful, and angsty. It’s going to make for a great coming-of-age story.

Even though I’m in my mid-thirties I feel like I’ve been on my own Bildungsroman with J these past 13 years. Not with him, but alongside him, because:

J at one year.

“A Bildungsroman relates the growing up or ‘coming of age’ of a sensitive person who goes in search of answers to life’s questions with the expectation that these will result from gaining experience of the world. . . . Usually in the beginning of the story there is an emotional loss which makes the protagonist leave on his journey. In a Bildungsroman, the goal is maturity, and the protagonist achieves it gradually and with difficulty. The genre often features a main conflict between the main character and society. Typically, the values of society are gradually accepted by the protagonist and he/she is ultimately accepted into society — the protagonist’s mistakes and disappointments are over. In some works, the protagonist is able to reach out and help others after having achieved maturity.” (Wikipedia)

I hope the next 5 + years J and I will be able to successfully navigate our “coming-of-age” stories, side by side. It’s crazy to think that I still am finding out who I am. If these high stakes will make or break me. In some ways J and I are still in this symbiotic relationship. Giving and taking and making mistakes and experiencing disappointments all in the hopes that we can each find our place in society. That we can both feel successful in our own ways–the ways we need to.

And maybe, after we survive these next couple of years and growing pains, part of that J mystery will be solved, and we’ll really get to find out who this J really is. It might take longer than that too. I feel like every year we get closer. Sometimes I get frustrated that it’s not happening fast enough, but I know when we do, when he can sit in his own skin long enough and understand how it works, and who he is, he’ll be able to show us, and it’s going to be amazing.

Happy Birthday, J. Let the Bildungsroman begin!