Day 60: Pearls before Swine

Nick injured the tendon in my right wrist with his bite. Three days later it still hurts when I touch it.

I had taken Nick to get measured for an orthotic. It’s common for children with autism to have physical difficulties to go along with the socio-psychological challenges they face. Nick is one of the 30% of people on the spectrum who have moderate to severe loss of muscle tone. For Nick, this is most evident in his trunk strength. His abdominal muscles are rather weak, which makes it hard for him to sit up for long periods. To compensate, he uses his posture to hold himself up. Instead of sitting on his bottom, Nick sits on his feet. He has hypermobility in his ankles, which means he can perform the super-human feat of having his feet flat on the floor with the rest of his body weight squatted above them. This way he can lean his torso on his knees rather than hold himself up, giving his tired core muscles a break.

This posture can cause a lot of problems. First, the weight of his body on his ankles has caused his heels to shift outward. If you look at your own feet and ankles, you’ll see your heel lines up directly with your ankle. Nick’s heels, however, are about an inch to the outside of his foot. Second, the posture has caused his shins to bow outward, making the bone more crescent-shaped than straight. Third, it has caused a curvature in his lower spine. He looks a bit like a stegosaurus with the knobby hump curving outward from his back.

The physical therapist wants Nick to get orthotics to straighten out his feet before he starts regular PT sessions. So off to the orthotic specialist we went.

Nick did so much better than he would have pre-risperidone. He flipped the light switches in the waiting room, but he was easily redirected. When we went into the exam room, he hid under the table, but he didn’t melt down. Progress.

Through coaxing and diversion I was able to get Nick through the physical exam. We even made it through the fitting. Almost. 

The mold of Nick’s left foot was perfect, but the mold of his right, not so much. She had to redo it. 

Scream, kick, bite, pinch, etc., etc., etc. I thought about posting pictures of the bruises I left the appointment with, but I'm tired of detailing my wounds. Let's just say there's a large patch of purple five-inches long and three inches wide on each arm. The cool part is that most of the damage is on the back side of my arms, so if I don't lift my arms up, you miss most of the freak show.  

That was enough to get me to finally do what I've been hesitant to do for the past couple of weeks--call Nick's doctor. She increased his dose of risperidone a tiny bit; we'll see if it helps.

But here's what I couldn't stop thinking about during the trip to the orthotic specialist, and I'm not sure if I should say it or how I should say it. It's just that there were all these pictures of products, from helmets to reshape infants' mal-developed skulls to titanium legs for children who had lost their own. There was my fearful autistic son, fighting in fear. There were then the thoughts of mothers I know, mothers whose children are on feeding tubes or have had open-heart surgery or have life-threatening asthma or are battling cancer or have lost the fight with an illness and are mourned. 

So many children, so many mothers face horrific, overwhelming, nearly insurmountable struggles. And it makes me angry when I hear mothers who have (thankfully) never had to endure such dark moments complain and feel overwhelmed by the healthy children they have been given. Getting my child to soccer practice is so difficult! My child has the stomach flu! My baby is teething! Back to school shopping is so hard! I have to sit in the pick-up line at the elementary school every day for an entire half hour! Oh my God! It's the most terrible thing I've ever encountered!

I struggle, really struggle, to bite my tongue when I hear mothers say such things. I want to grab them by the shoulders and shake them--HARD. I want to tell them that all they "endure" is really a delightful blessing of mundanity. I want to tell them they have a life full of blessedly pedestrian moments to be thankful for. I want to tell them that they are casting pearls before swine. How DARE they cast those pearls aside. I want to keep shaking them until they gather up every single pearl, clean them lovingly, and store them in the treasure box of their heart. 

Just, be thankful. Every time you are not sitting in an endocrinologist's/psychologist's/oncologist's/ nephrologist's/pulonologist's/any-other-ologist's office with your child, be thankful. Every time you are looking at your child smiling instead of suffering, be thankful. Every time the biggest argument in your house is about how much time your son gets to spend playing Nintendo, be thankful. Smile, even. Hell, throw a party--your child's fight is for video game time instead of for his life. Be. Thankful.

Because there are millions of mothers who would give all they have to live just one day with your "curses."

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.

Mothering and the Academy Don't Mix (?)

Yesterday was Dead Day. You know, the "quiet" day on campus when there's nothing to do but grade.

Hah.

I spent my morning at Campus Health with the most recent contestant in the "Let's Try to Figure Out the Mystery Abdominal Pain" trivia game. Yet another doctor stumped, so I was shuffled off to the lab for tests. Gosh, you'd think that with the number of people who've played this game that someone would be a winner by now ::sigh::

Then I grabbed some lunch and scooted off to my study carrel to grade portfolios in the bit of time I had before I needed to be at the WC to interview the next crop of potential interns.

That's when my cell phone rang. Uh oh.

It was Nick's teacher. "I think I got confused," she said. Apparently, she thought for some reason that I'd be picking Nick up . . . and didn't put him on the bus to his daycare.

Not good.

I called W to see if he could pick up Nick, and it was taking painfully long for him to call me back so I frenetically scooped up my things, ran down three flights of stairs, ran over to the parking garage, ran up three flights of stairs. I was already to my car when W called back and said, "I wanted to do this for you, but it's a bad day at work . . ."

I raced off to Nick's preschool, trying not to burn my fingers on the steering wheel that had been baking in the 100-degree heat, consistently breaking speeding laws all along the way.

When I got to his school, Nick was out on the playground with an aide. "I thought he was supposed to get on the bus. I told the teacher that," she said.

I know the kind thing would have been to engage in conversation a bit, to thank her for watching out for Nick, but I was rushed. I mumbled something brilliant like "it's okay" (which, you know, none of this was okay), and steered my child toward the gate.

"Nick, let's play GO!" I said. And my child and I ran hand-in-hand to the car.

I got Nick to his daycare on the north side of town and rushed to get him unbuckled and into the building. I took him straight to his classroom and opened the door. He promptly threw himself to the floor and started screaming.

In autism language, that means, "Yikes! Someone's messing with my routine and I'm freaking out!"

Nick's teacher just sort of stared at all of this (super helpful--thanks), but fortunately a teacher from another class said, "He needs to go to the playground when he first gets here."

Oh.

So I scooped up the mid-meltdown child and led him to the playground. Then I went back to my car and choked down a sob before starting the engine.

I rushed and rushed and rushed back to mid-town. My cell phone rang with "where are you?" calls. I pulled into a parking spot and ran to the WC. I think I got there four minutes before the interviews were scheduled to start.

I put on my game face, and I don't think the eight undergrads that came in that afternoon could tell that I'd been racing across town like Speedy Gonzales on crack moments before.


All of this crazed running made me think about whether or not mothering and the Academy really can mix. People from outside of the Academy think I have a great gig--they think I can schedule classes for when my kids are in school and that I can do work when the kids are asleep.

In theory, it sounds ideal.

In practice, I'm racing through town mid-day, praying that I can make it back in time.