It’s all relative

In honor of tomorrow’s IEP meeting, the percentiles are marching in. And they aren’t pretty.

• 11th percentile for speech articulation
• 5th percentile for body strength and agility
• 8th percentile for body coordination
• 5th percentile for visual perception
• 5th percentile for motor coordination
• 7th percentile for fine manual control

Age equivalence of a 3.5 year old, global physical delays, difficulty in coordinating visual and motor systems…

But this is why we are a good team, we three. When I shared these grim statistics with my husband, he turned to me and said, “Yeah, but when it comes to love, he’s in the 1000th percentile.”

Now that’s a number worth holding on to.

 

You can swim

My son has been troubled by one particular bad dream for the last two nights. In his dream, he is holding on to the outside of a sinking ship and he is very scared. He’s quite clear on how this dream starts out good and then turns bad. I don’t know where this dream comes from, but maybe it comes from listening to the song Titanic by Dan Zanes. GP knows the story of the sinking ship from the song and from The Magic Treehouse book #17, Tonight on the Titanic, by Mary Pope Osborne.

It’s been about a year since we read the book together, but this past weekend, we popped the Zanes CD into the car and listened all the way from here to the east end. A trigger? Maybe. But he can’t let it go. The bad dream has colored his conversations for two days.

Coming back from spring break has been a bit bumpy. There’s been a lot of drama and some tears and a fair amount of anxiety. We’ve stopped doing the eye exercises at home, and we are this close to quitting altogether. The developmental optometrist called last night to encourage us to stick with it for three more weeks of in-office therapy sessions and then a re-evaluation. I understand why he wants us to continue. He wants to learn something—have the means to compare and contrast—and he doesn’t want to lose the time and effort we’ve put into it so far. But it’s a struggle. And I already told my son we could stop.

Friday is our IEP meeting. I think it will be a good meeting, but I won’t really know until all is said and done. I have some early feedback that the district is on board with our requests and I’m hopeful that the meeting will involve little more than working out the actual logistics. I want my son in a mainstream classroom for 2nd grade with a one-on-one aide. He needs the support academically, but also socially and I’m hoping that this plan will be approved. It’s a little tricky though, because even though this year didn’t start out well, he’s settled in and currently negotiating the classroom with very little support. A one-on-one is more restrictive, but I think it’s fair to say we can make a strong case for our point of view. His teachers and the district autism consultant support the idea—but I’m still keeping my fingers and toes crossed, just in case.

Most of the time, I know we are going to be okay. My son is an amazing kid. He has a great life. His diagnosis is not going to weigh him down. PDD-NOS. What exactly does that mean? My guess is that as he grows and matures and learns to cope with and compensate for his delays, it won’t mean much. At least not to us.

But as we stand here, in the muddy waters of being six and having “issues” and needing therapy and support and lots and lots of handling with care, I can sometimes lose sight of how okay everything really is. I let it pull me down—I feel like I am the one hanging on to the side of that sinking ship. And I make it harder on myself than it needs to be.

But I know how to swim.

And that is what I’m going to tell my son about his dream. It’s okay. Let go. You can swim.

 

Eight weeks

I heard my son tell his cousin last night on the phone, “Just a few more school days for me and then I’ll be in California.” The concept of time remains elusive. A few more days, a few more weeks, two more months—who’s counting? I guess he is. Sort of.

They are working on some sort of scheme that involves multiple Speed Racer tracks. They talk every few days on the phone, comparing, competing, “I have 75 Speed Racer cars,” my nephew says. And in a way that betrays his innocence, my son replies, “I have 3,” as though 3 somehow trumps 75. Then to my surprise, my nephew admits, “I have 4, but that’s still more than you, so that means I’m older, right?” (he’s not) and then they are on to the logistics of transporting a five foot track with side by side loop de loops across the country in one piece.

“Tell your mom to get a box,” my world weary and street smart nephew advises when my son declares the impossibility.

I love to eavesdrop on these conversations. Little boys trading ideas, working things out. Endless plans, few of which will ever come to pass.

Last summer it was The Sleepover, which lasted all of ten minutes before they insisted on separate rooms and closed doors.

I wonder what it will be this summer?

 

Mind the gap

Boundaries can be tough. Sometimes they are clearly marked, painted yellow, like the line across the train platform that reminds commuters to “mind the gap.”

Other times they are not so well-defined. For kids like my son, knowing when to draw the line, under what circumstances certain words or behaviors are okay, and under what circumstances they are not, can be extremely tricky.

In recent weeks, we’ve been using a word around the house and with each other as a term of endearment or to convey happiness or coolness or silliness. The word is baby. As in, don’t worry, baby. Or, okay baby. Or even, yeah, baaabbbbyyy. And in all this time, it never once occurred to me that baby could be bad.

Today, my son got in a bit of trouble for calling one of the girls in his class a baby. Thing is, I don’t think he called her a baby. I think he called her baby. As in, okay, baby, let’s take out those math books.

Regardless, it came across as name-calling. Either he couldn’t articulate the context or no one asked. He had to apologize. It wasn’t that big of a deal and he wasn’t even that upset about it, but it made me stop and think.

Some things are easy to teach. Others, not so much.

 

Beyond the break

This is why I love this place. Not a soul in sight. Of course, this wouldn’t hold true in July or August, but today? Today there was not another soul on the beach.

Though the air had turned cold and damp, we walked back down to the beach tonight after dinner. GP wanted to see if the holes he dug this morning had been washed away by the surf. I was surprised to see the sand was littered with a long trail of seaweed. This morning, the water was crystal clear and the beach was clean. Nothing but a few rocks and broken shells washed up by the waves.

I can’t stand on a beach without thinking of my dad. I remember how he taught me to dive under the waves. I was probably around my son’s age at the time. A little nervous, a little brave—wanting my dad to be proud.

I can’t remember the last time I dove in. The Atlantic was stone cold today. Like newly melted ice. I swam in this ocean exactly one time in 20 years. I jumped off a pier in Jamestown one August day a long time ago—just because I could.

I wonder if my son will ever swim in the ocean. Or learn to count the waves and read the tide. I wonder if he will ever sit on top of a surfboard, paddle out beyond the break or do something—anything—just because he can.

My son never knew my father. But I wonder what he would have thought. I wonder what they would have done together—given the chance—for one long endless summer on the shore.

 

The way back home

There isn’t much that a day like today can’t cure. We were on the road early, a familiar drive under clear skies, trees topped with pink and green, the sun warm through the open sunroof, Dan Zanes blasting on the car stereo.

And then this—

—a perfect afternoon.

My sister is finally home. My brother, too, though not the home I would prefer. And I am home, in my heart, with my boys.

 

Unsettled

Tonight my brother is flying back to Colombia, leaving behind a trail of mixed emotions. Mine, his, all of ours.

My sister is in the hospital. She’ll be fine, eventually. But life changes in a heartbeat.

Tomorrow I will be standing on the sand with my husband and son watching the Atlantic collapse against the eastern shore.

As much as things change, they stay the same.

I took GP to the playground this afternoon. The play structure was crowded with kids, but he was reserved—again, he held himself back, clinging to me and asking me to play with him instead. After a few awkward moments, I asked it he wanted to leave. “Let’s go somewhere quiet,” he said.

Something is in the air. I feel unsettled. Quiet is good. An empty beach. Just me and my guys.

By Monday, everything should be back in its rightful place.

 

Under a shady tree

As we stood under the trees this afternoon, my son looked up at me and said, “It’s snowing,” and he wasn’t exactly wrong.

On that enormous field, in the middle of a beautiful sculpture garden, on this incredible spring day, it was, in fact, snowing…pink and white petals from the flowering trees.

Today was better. Busy, but quieter, calmer, less agitated. “I want to do something to enjoy nature,” he said this morning. And, then, later in the day, as luck would have it, we found ourselves on the field, enjoying the sculpture and staring up into the wide open sky.

Earth Day, indeed.

 

When is a funk just a funk?

The counterpoint to all this growth and development, is a complete system breakdown at home. This weekend he blew through the house like a hurricane, agitated and restless, too hungry, too tired, too everything. He bounced from the tiny TV in the office upstairs to his room and his toys, back to the TV and then downstairs, outside, back inside—unable to settle, unable to find his place.

He is edgy, fragile, wild—the frustration is evident, even this morning.

I don’t want to read too much into this. I won’t speculate as to what is upsetting the balance. It could be spring fever or a developmental burst. It could be the vision therapy or simply the fact that the new TV won’t arrive until midweek. It could be a growth spurt or another cold coming on. It could be any number of things.

A funk is a funk. We all have them. But as the parent of a child with special needs, I have spent a lot of years looking for clues. Something is not right?—let’s figure out why. Let’s dissect it and take it apart and analyze the hell out of it.

But sometimes a funk is just a funk.

I’m thinking about trying something new. I’m thinking about telling him to get over it already.

(I’ll let you know how it goes.)

 

Keeping the force with us

Yesterday’s Star Wars birthday party was a swirling tornado of light sabers and small bodies hurling themselves through space, and my son—holding himself somewhat apart, out of the mayhem.

It was a beautiful day. The kids were quickly moved outside into the large yard where their energy could be more easily dispersed. Not so long ago, this party would have been impossible for GP to navigate. But yesterday he did just fine. Like at the zoo, there were a couple of near misses. A couple of very minor breakdowns. But like at the zoo, he stood back, choosing not to participate in the party games, but to play alone in the house.

There was a time when this would have upset me. The fact that he wasn’t participating. But there was also a time when his participation would have led to a complete meltdown. He’s growing up. Learning to figure out what he needs. And I have to respect that. It’s not about what others think (why doesn’t GP come outside with the other kids?) or about what I think (is he okay? is he having fun?). It’s about what he needs and what he wants. When it was time for the kids to eat and to sing and to open presents, he joined right in, taking his place on the grass in the late afternoon sun.

We’ve known the birthday boy’s family since moving to Mayberry a few years ago. They include us in all their events and invite us to tag along on nearly all their outings. Yesterday, we were asked to stay for the family dinner after the kids party ended. James got off the train one stop early and walked over to meet us.

As the birthday boy and his brother and their cousins ran around in Star Wars costumes and organized baseball games in the street, GP amused himself in the big backyard of toys. And when I looked over and saw how he was dragging his feet, I told him we needed to get ready to say our goodbyes, even though most everyone was still eating dinner and the gigantic cake had not yet been served.

If I’ve learned one thing in all these years of parenting my son, I’ve learned when to leave. We are very often the first ones out the door. But we’re learning not to let that bother us. Because saying goodbye with a smile and a hug beats the hell out of tantrums and tears.

 

A lot of yesterdays ago

This beautiful magnolia is firmly rooted in my neighbor’s yard. It is an old tree with twisted branches and pale pink flowers—the centerpiece of our block. When I see this old girl in bloom, I know there is no turning back, winter will not have a last blast, it’s done. Spring is here.

Today I went with my son’s class to the Bronx Zoo. We saw tigers and baboons and giraffes and polar bears and seals and lions and snow leopards and countless birds and four-legged things. It was a big day. And it wore my son out. He was so exhausted tonight, so completely out of sorts, that as I helped him into his pajamas he simply broke down and sobbed.

There were some near misses at the zoo. Some moments that escalated—it was crowded and noisy and it didn’t take long for him to fall into sensory overload. His teacher wisely kept the class together, but keeping pace with 20 kids and nearly as many parents, was exhausting. There were no breaks in the action. No opportunities to go our own way or do our own thing.

I think he recognized the challenge. He chose to stay by my side, matching my step for most of the day. His classmates ran ahead, ran amuck, but he held himself back. And for that, I am grateful, though I know the day was not entirely easy for him.

Next week is spring break. The school year is winding down. It won’t be long before the magnolia drops its flowers, leaving them to turn brown on the sidewalk in the heat of the sun. There are days when I am just so tired, days when I worry more, laugh less, smile hardly at all. Today was one of those days. A day where I couldn’t turn my back, let down my guard, or let go of his hand.

Today felt like a lot of yesterdays ago—only he didn’t fall apart at the zoo. He waited until we were alone, safe at home.

After he calmed down and I tucked him into bed, he turned to me and said, “Thanks mom. Thanks for coming with me to the zoo.” And I knew exactly what he meant. And that it couldn’t have been any other way.