I really don't have that cape

Nick's been having an "off" week. That's the term that comes up in discussions with his therapists and teachers during times like this. It seems that with all their thera-speak and edu-speak that they'd come up with something fancier, but "off" is the word of choice.

And always, when he has an off week, I am thrust into the role of detective, trying to figure out what went wrong so that the off could be turned back on again. Was it the allergies? The slight increase in Depakote last week? The nosebleeds? The end of the school year? A decrease in calcium or Omega 3s or Vitamin D or Selenium? The therapists and teachers add pressure to my obsessive sleuthing, pelting me with question after question about what might have changed to make him off.

A lot of times, I can figure out what triggers him. He's OCD about some things, which a lot of people with autism are, and I've become rather expert in memorizing those things. If we're going to the school bus stop, we need to walk down the left side of the driveway, and then we have to close the gate to the neighborhood ALL the way, and then we need to stop at a certain spot to play in the dirt. Mess up one of these things, and the aide on the bus gets scratched by an angry child who needs to finish his rituals before being buckled into his seat. But I've memorized them all, and learned how to speed through them when the bus shows up too early, so Nick's usually okay.

But there are some things that I just can't prepare for.

Nick and I went to the store this evening. Not the crappy discount store around the corner, but the nice store a few miles away where I could buy some nice things. I remembered that the last time we went to that store that Nick got upset and so I proceeded very carefully and cautiously. I was living sunshine, making the store as bright and as wonderful for my son as I possibly could.

We got the cart and, doing my best rendition of cheerleader-mommy, I settled Nick into the seat. And . . . nothing! He sat down happily in the cart! This is usually the battle line--if we can cross it, we're golden.

But then I buckled the seatbelt.

It wasn't really a seatbelt; it was an armpit belt. And Nick FREAKED OUT.

I could totally understand his freak-out; in his world, seatbelts NEEDED to be on laps. It made sense. And so I unbuckled the seatbelt.

Nick freaked out even more. Because a seatbelt gives him security: YOU CAN'T BE IN A GROCERY CART WITHOUT A SEATBELT!

And so I took him out of the cart, talking to him in my most soothing mommy voice, reassuring him that it was going to be okay. He cried and fought to pinch me in his frustration, and I continued to soothe. A woman trying to get around us to reach the kiwis shot me a dirty look, and I decided that rather than yell "What the fuck is wrong with you, lady? Haven't you ever seen a kid with autism?" that I would just ignore her and continue to soothe my son.

He screamed and cried and said "bagel, bagel" in between the screams and cries . . . which totally made sense to me because carbs make me feel better when I'm upset. And so I scooped up the battered pears, the victims of Nick's angry kicks, settled them into a safe corner of my cart, and took my son over to the bread aisle.

I found bagels. I lifted them up as an offering . . . and he shoved the bag away and screamed.

Because we weren't at the crappy store around the corner and these weren't the cheap Sara Lee bagels he was used to. The unfamiliar bagels were probably more stressful than the misplaced shopping cart seatbelt.

We made it down one aisle. I talked to Nick and soothed him, staying calm and loving the whole time. And then we went straight to the checkout line where, thankfully, there was only one person in front of us. As we waited the short wait and Nick cried, I reached for a chocolate bar, opened it up, and offered a piece to Nick right there. He took the piece, crumbled it in his hands, and screamed. I scooped up the bits of broken chocolate from the floor, hoping they wouldn't melt in my pocket before I could get to a trash can.

And, and long last, we made it to the car . . . with inedible pears and a crunched-up chocolate bar in our bag of purchases.

In the car we'd be okay. Nick likes riding in the car. He has the security of his five-point car seat harness to make him feel safe, the rumble of the road to relax him, and the sights zooming past us to keep him enthralled. In the car we'd be okay.

And so I drove along until it was time to make the turn off the main road. As I did it I had the realization that I was doing it ALL WRONG, but it was too late.

Nick screamed and cried and kicked my seat. I'd waited a millisecond too long to move the car over to the right, and I hadn't moved far enough over, either.

I soothed Nick through the turn with my gentle voice, telling him that it was all going to be okay.

And then we turned to enter our neighborhood, and the car before me had triggered the gate . . . which meant I didn't have to stop for a moment and wait for the gates to swing open.

Nick screamed again, and kicked again . . .

and I screamed too.

"Calm down, Nick! We're going to make it home! It doesn't matter if we stop or not!!"

My god, I screamed at my child.

We pulled into the driveway and I apologized to my son. "Honey, I'm so sorry I yelled at you . . ." and then, out of nowhere, I started to sob. "I love you. I love you so very, very much. And I'd do anything for you," the tears were streaming down my face now, "but sometimes it's hard. It's just so fucking hard."

And my son, hearing my sobs . . . laughed. Because he doesn't know how to decode the emotions of others. I mean, really, if you think about it, a laugh and a cry sound a lot alike.

So we got out of the car. We walked up towards the house, and something somewhere along the sidewalk wasn't quite right and Nick dropped to the ground in tears. I picked him up and we walked into the empty house, crying together.

---------------

Denise was off today. The detective tries to piece together the reasons why. Was it the chaos of getting her boys through the last week of school? Having her allergies transform into a sinus infection complete with sore throat and earache? Waking up at an ungodly hour because Noah is on his summer schedule, awake and ready to take on the world when it's impossible to wake him during the school year? I mean, it must have been something; why else would she have yelled at her son and broken down into sobs?

But you know, maybe there's no smoking gun for why I was off or why Nick was off. Maybe it's just that sometimes autism is hard.

When I Fell in Love

I never saw myself as a baby person. I remember when I was in my mid-twenties and my friend Beth had a baby . . . I held that thing and was completely FREAKED OUT. Beth's baby fell asleep in my arms and I didn't know what to do. "He's asleep," I said in panicked whisper, and Beth calmly replied, "It's okay; you can just keep holding him." So I did, freaked out as I was.

A couple years later I was in the bathroom at my mom's house with my cat, Nutmeg. She sat with me as I waited for the plus sign to show up on the pregnancy test. Which it did.

I instantly loved that person who I just learned was living in my womb. I remember going to the mall and buying the baby a present--a yellow rabbit beanie baby named "Grace." Although I wasn't expecting or planning to be pregnant at that point in my life, grace seemed like the best word to describe how I felt about that little person, like God had given me a gift in His grace.

Though I still didn't see myself as a baby person. Fortunately, I thought, I happened to be married to someone who *was* a baby person. He was the kind of guy who would always talk and wave to the babies in the supermarket . . . and I always tried to get him to stop because I was sure the moms would be freaked out by this stranger cooing over their baby. He was the kind of guy who cried at the tiny baby booties I bought at Target . . . I think we both figured that he'd be the one who did the bulk of the baby stuff, since that was his thing, and I'd sort of take over when the kids got older.

Of course, that's not how it happened at all.

The baby was born . . . and since he was a boy the name "Cosette Grace" didn't really fit him. But Noah did.

The first few weeks were a blur. I was recovering from both labor and a c-section, adjusting to the irrationally large hoards of laundry that such a tiny person produced . . . but then, after those first few weeks, something amazing happened. I fell in love.

I'd loved Noah ever since I'd seen that plus sign in an abstract sort of way, but it took time for me to fall into that absolute, indescribable sort of love. I think it's because I've always only been able to fall in love with people I knew well, and Noah was a stranger at first. But once I got to know him, there was this love that I never fathomed was possible.

That first summer is the summer I know I will look back most fondly on for the rest of my life. The semester didn't start until September, so I had three months of glorious time with Noah. I'd nurse him and he'd fall asleep in my arms . . . and rather than being freaked out like I was with Beth's baby, I loved ever second of him there asleep next to my beating heart. I didn't take him to his crib to sleep, but instead I sat there with him, holding him, for hours upon hours.

And I loved the tough times too. When he was sick and I rocked with him in the rocking chair in the corner of his room, I remember feeling so THANKFUL. It felt like such a gift to be able to be the one to hold him and help him when he was hurting. And when he coughed so hard from croup that he puked, I caught the puke in my hands as I held him. Yep, that's when I *really* knew I was a mom.

A few years later is when Nick came along . . . this time the baby was planned. And again I fell in love, but this time it was faster. I remember not wanting to leave the hospital because I loved the quiet time Nick and I had with each other there. To love two people, so fully . . . I never knew it was possible.

It's Mother's Day so I'm thinking about these two great loves of my life today. Is it hard being their mom sometimes? Yes, sometimes. Autism can be a bitch, and every now and then I wonder what it would be like to have a week without habilitation therapy and occupational therapy and speech therapy and IEP meetings and doctor's appointments. Oh, and those cold, calloused people who don't give my children the compassion they deserve as human beings. But would I ever, ever trade my boys for a moment? NEVER. They are the two most amazing people I've ever met. The loves of my life.

And when I focus on that love, it makes all the other decisions in life easy to make.

Empathy

They say that people with autism lack empathy. There's the whole theory of the mind hypothesis that says people with autism have mindblindness--they are blind to the thoughts and experiences of others.

Today Nick proved those theorists wrong.

Nick was in a sensory-seeking mood as he was trying to calm himself down from the trauma of a dog visiting the house (unfortunately the therapy techniques that work for Noah don't work for Nick). And so in his frantic moment he reached for the nearest person--Noah--grabbed him by both arms, and in a split second had bit his bicep.

The bite broke the skin. It was the ugliest Nick bite I'd ever seen and, my friends, I've seen a lot of Nick bites.

I quickly shuffled Nick off to his room and focused on Noah's wounds, making them feel a bit better with band-aids and Bacitracin and ice packs and lots of mommy kisses. Then Nick came out of his room.

I did it mostly for Noah, because I wanted him to see that I treated his brother's misdeeds the same way I treated his, and not because I thought it would register with Nick. I brought Nick over to where Noah and I sat on the floor and had him sit with us. "You hurt Noah," I told him.

Nick looked at his big brother, who was still working to control the sobs, and when he saw the sadness in Noah's face, his face immediately changed to match the sadness. I thought that *he* was going to begin to cry.

"Noah sad," he said with a heartbreaking tone in his voice.

"Yes, Noah is sad," I told him. "Noah is sad because you hurt him."

"Oww, oww," Nick said, acknowledging his brother's pain.

"You need to say sorry to Noah," I said. Nick was silent. "Say sorry to Noah," I repeated.

"I sorry Mommy," Nick said.

And then I had the brothers hug.

****

Six months ago I wouldn't have been able to get Nick to focus on looking at his brother's face. Six months ago Nick wouldn't have been able to speak the words he did today--he was still using PECS cards to communicate.

Those two things are miraculous. But the most miraculous thing is the way he looked at his brother and felt his pain. I've never seen empathy and compassion like that. He saw his brother in pain and immediately he felt that pain, too.

I love the way Nick pushes the boundaries every day, challenging what all the theorists and experts said about what he'd be able to accomplish. He started speaking when they thought he wouldn't. He went from one-word utterances to complete sentences in mere months when others thought it was impossible. He demonstrates compassion when the very term that labels him, autism (derived it from the Greek word αὐτός, meaning self), says he is so into himself that he can't sense the feelings of others.

Ha, take that experts--a five-year-old has thwarted you again.