Measured Hope and Heavy Lifting

Dear Joy,

I have a story for you.

It’s not really related to anything we’ve written about so far, but it’s a story of measured hope, made of stuff like the hard work and heavy lifting you mentioned. Very few of the people who know me have heard this story in its entirety. I’ve been hesitant to tell it, but I’m offering it to you now, on Mother’s Day.

I grew up in a big family, so the idea of having kids was natural for me. I knew I wanted to be a mom. I worked for several years in my early twenties, and then, when I got pregnant with our first baby, told my boss that I’d be leaving permanently, right around my due date. When Charlie was born, I continued to freelance, but stepped into the role of Full Time Mom without a second thought. (But the second thoughts, they came later.)

Charlie was a difficult baby. Granted, we were probably difficult parents to have – do first-time parents ever know what they’re doing?! – but still, it was tough. He was sweet and smiley and giggly, but he needed to be rocked, touched, held. I sang to him constantly. We couldn’t sit still with him for very long; holding him in our laps during a church service or at a restaurant was out of the question. He didn’t sleep well. I remember him crying a lot. I felt like I was always bending, sweating.  In those early days, there was joy, and beauty, and it wasn’t all horrible, but he was one of those babies that just made you work for it.

Then, when I was pregnant with our Joshie, things started to go downhill. Charlie was two, and very cute, very sweet, very articulate, very smart… but something wasn’t right. (I didn’t see it clearly at the time; now, oh, it’s so clear.) There was no quiet playing. He didn’t sit and play with trains or cars or action figures. He didn’t like to color. I had to stay one step ahead of him, and we were always moving on to the next thing because he was “bored” with what we were doing. This wasn’t your typical high-energy boy, but rather the inability to focus and concentrate on one thing. He was extremely sensitive to loud noises and unexpected touch. Other kids who screamed were the absolute worst, because it was unexpected and sudden. (Lots of two-year-olds like to scream – Joshie, now two, has this high-pitched screech that drives imaginary nails through your brain. SO! Nothing against loud kids.) My friends had kids who were loud, and Charlie was terrified of them. We couldn’t go to parks when it was too windy, too sunny, too noisy, too crowded, or else, inevitably, Charle would have a meltdown. Family parties were a nightmare, holidays at relatives’ houses practically killed us all.

My world started to shrink.

We learned how to manage things. Don’t stay too long, anywhere. Go when things are quiet, and not busy. Grocery shop at night, when he’s in bed. Find quiet corners at someone’s house for him, and sit there, cloistered off. Preserve naps and bedtime routines above everything, because it was our only sense of normalcy. Always be going, doing. This sounds crazy, but we couldn’t spend a lazy morning at home – he couldn’t take it. Charlie would lose it, and we were so confused. If we let him “float” for any amount of time, he would explode, like he didn’t know what to do with himself.

Joshie was born, and I went under fast. (Geez, this is bleak. Hold on, bear with me.) I had post-partum depression, an almost-three-year-old who couldn’t handle the world, and an infant. The winter of 2013 was the darkest, bleakest, most depressing season of life I’ve experienced so far. I literally couldn’t get out of bed. I yelled constantly. I was so angry. My teeth hurt from clenching them together.

I saw a professional counselor. We went to a pediatric ophthalmologist, who prescribed glasses for Charlie (it helped his behavior, a little). I read books on Sensory Processing Disorder, Autism, all of that. Charlie didn’t quite fit into any category, but I learned lots of things that helped (or at least Band-Aided) the problem. I prayed.

Lots of people gave us advice. Most didn’t see anything wrong with Charlie (since we tried so hard to manage his meltdowns), and told us that we just needed to discipline him better, or put him in therapy, or put him in preschool, or just leave him alone and let him grow out of it. I was dying inside, soul crumbling. I didn’t have the time or energy or – if we’re being honest – trust to share what I was going through with more than a few people. We were at a summer party, and a friend’s mom asked me how I was doing. I told her something like, “Eh, life is hard right now. The boys are tough.” She looked at me, and said firmly, critically, “Children are a blessing.” And that was that. Of course she didn’t know what I was going through, but I can’t even tell you how angry I was.

We were referred to an excellent pediatric neurologist, who, after evaluating Charlie, told us that he definitely wasn’t autistic, that he thought Charlie was running the show in our house, and that he recommended professional therapy for Charlie’s childhood anxiety. And all I could think was, Something is wrong here. Something isn’t right. You’re recommending that we teach our son how to manage his behavior, instead of figuring out what’s causing it.

We were desperate. (Ah! Still bleak! It gets better, promise.)  I was defensive. Marty and I were strung out. We kept searching for answers. We had Charlie evaluated by a local alternative therapy program that promised results, but didn’t feel quite right about it. We didn’t know where to turn. Get more evaluations? Occupational therapy? See a chiropractor, an allergist, a different neurologist? We felt lost. We kept praying.

And then: HOPE.

I stumbled across a program one day while searching the internet, looking for answers. Brain Highways was an online program that was less flashy, more affordable, and… maybe… could help us. There was ample criticism about the program. (“No clinical studies!” “Not based on research!” “Garbage!” “Ridiculous!”) Ok, fine. But there were also parents who were doing it with their children, and seeing some incredible results. The program itself was a little weird, a little far-fetched… but we were barely functioning inside our own home. We needed something. So we signed up.

We started the program in the fall of 2014. Basically, after having your child do a series of “patterns” on the floor, you then have them “creep” (army crawl) on the ground for half an hour a day. There are lots of other components to the program, but that’s the core of it. SO, imagine Marty and Charlie and I, fighting and crying and creeping, day after day after day after day. We told some people about it, but we mostly kept it to ourselves, because it was just so completely strange.

Things began to change.

A few weeks into the program, I got out the paper and paints and sat next to Charlie at the table, and he began to paint a picture of our backyard. He painted grass, sky, trees, and two suns with beams shooting out of them. He mixed colors to make a purple-brown for the mud. He painted a swing, our deck, a smiley face. It took him twenty minutes. Never, ever, had Charlie painted something like that before, with detail, care, and precision.

I freaked out, and framed it.

A day later, he drew a little fairy, with wings and a tutu and a huge smile, and spindly arms and legs.

I freaked out, and framed it.

On Thanksgiving, we spent the morning at home, playing and watching the parade and making breakfast. Charlie played. There were no meltdowns. He ate breakfast. We had the best, best morning.

Charlie started to make eye contact with people when they talked to him. He stopped cringing when someone touched him on the shoulder. He actually looked at my camera when I took a picture of him. When I told him to put his shoes and coat on so that we could leave the house, he didn’t burst into tears, or start screaming.

I started to breathe again.

In late November, we went to a family wedding. The music was loud, and where previously Charlie would have lost it five minutes in, he now calmly ate his dinner, and danced with his cousins. No meltdowns.

We hosted a neighborhood Christmas party at our house in early December, and our tiny home was packed out. Charlie played, ran around, ate cookies, laughed.

This Spring, Charlie was running in the backyard. It was rush hour, so cars were honking. The wind was really blowing, and it was painfully bright outside. (All triggers for complete meltdown last year.) And Charlie just kept running, kept playing. He can dig in the dirt now. It’s amazing.

We’re still doing the program. (In the second phase of the program, we’ve moved from creeping to crawling, hands and knees. YES, people think we’re weird. But we also now have a fully functional child, which I think is a good trade-off.)

I’ve had some people tell me that Charlie just grew up, matured, and that the Brain Highways program had nothing to do with it. Other people just don’t want to hear about it, because they don’t have a box for something like that. (Wait. A program based on crawling is what helped Charlie? What? Not possible.)

We’re far from done; like every other parent and child, we’re on a journey with Charlie. We’re figuring out the pieces to his puzzle. We’re still working hard. But I’m here, amazed at the kind, compassionate, gentle young man my five-year-old is becoming. He’s absolutely, wonderfully incredible; we just had to figure out how to let the rest of the world see it, too.

I guess I wanted to tell you all of this (some of it you knew, some you may not have known), because, while I don’t know exactly what you’re going through, and I’m not at all comparing my “difficulties” to your own, I so know what it’s like to be in the middle of something, and not be able to see a way out. On my darkest days, I would walk into church and scowl (mostly inwardly), angry at all the happy people around me, desperate for someone to notice that I was drowning on the inside. I would compare my life to the perfect lives I saw around me. I would envy the calm, collected children I saw everywhere, instead of choosing to embrace and champion the little boy right in front of me.

I don’t have a moral, and I can’t wrap things up, because we’re not done yet, and I don’t have the answers. But remember what I said about the praying? and the hope? Those two things are what I’m holding on to.

I didn’t really want this to be my story, actually. I’d rather my title read something like, “Classy mom with well-decorated house raises successful children, earns doctorate in literature, saves children from poverty, writes gospel-themed book that wins Nobel prize, becomes president.” But, as every good writer knows, you have to write what you know.

And this journey – meltdowns, creeping and crawling, God with us, and a beautiful boy emerging – is what I know so well.

Happy Mother’s Day, dear Joy.