Keep Paddling

When I was at the Rockin’ Mom Retreat last weekend, one of the themes we talked about was the idea of a duck swimming. Ducks look like they glide so smoothly across the surface of a lake, don’t they? But underwater, where most people can’t see, their feet are frantically paddling. And they keep paddling, or else they really don’t move forward.

duck

This week, I felt like the duck. Paddle, paddle, paddle. Look calm! But paddle, paddle, paddle.

Re-entry from five days of bonding and having fun was rough. Kindergarten has not been an easy transition for Sam. In fact, it’s been quite a rough one. I didn’t expect that. Sam is my easygoing, go-with-the-flow kid. He was moving from a preschool than ran all day long and had more kids to a kindergarten classroom that had fewer kids and was only in session for three hours a day. Piece of cake, right? Preschool had taught him everything he needed to know about lining up, taking turns, playing with friends, sitting for circle time, working at desks on projects, and so on. It would be easy, after the usual first-few-days rough spots that most kids entering a new school have.

Nope. I was dead wrong. This has not been an easy transition for Sam. He had a few good days in the beginning, and then lots of really not good days. I came back home to find the days had gotten even worse. And the frustrating part is, I feel like his educational team is really making an effort to make it work. We’re not facing a school or a teacher or a district who doesn’t want him—we’re working with a teacher, an aide, a district, and a whole host of staff members who seem to be going out of their way to try everything to help him transition. But the one person who’s buy-in we need the very most isn’t buying in: Sam is not comfortable and thus is not cooperating.

Because Sam has only limited expressive language, it’s very hard to tell what’s bothering him and why he’s choosing to stop-and-flop (common avoidance behavior in kids with DS), shut himself in the bathroom, refuse to come off the playground, and even in some instances throw chairs. Something isn’t right…but what?

The expectations for him in terms of work are very low so far: Our goal has been to get him comfortable in the classroom. When his classmates are doing desk work, the hope is that he’ll be at the table with them doing something. They’re all working on tracing letters, which is far beyond his skills right now, so we’re modifying all the work to be something he can achieve. And yet still, he doesn’t want to.

We’ve tried positive reinforcement, peer buddies, giving him classroom jobs, first-then strategies, visual prompts, among other strategies, and still he’s having a rough time. For whatever reason, something isn’t clicking. And his way of communicating that is by refusing to cooperate.

So, every day I drop him at school with a big smile and a little pep talk about how when Miss Alice says “all done” on the playground, we’re going to be all done and go inside. And every day I pick him up to a rueful grin from his teacher and a comment about the positive parts of the day…but also a debriefing on what didn’t work. And every day, I plaster a smile on my face and say, “We’ll try again tomorrow!” Because that’s what we’ll do.

We’re not alone. I know this. I’m in contact with many other DS parents who say their kids experienced the same very rough transition to kindergarten, and it just took time. And so, I keep paddling underwater, while Sam keeps paddling close to the surface. His ripples are obvious to all who see him; mine are hidden but no less dramatic.

The permission form for the first kindergarten field trip came home: a trip to the pumpkin patch. How fun, right? I thought that very thing as I sadly checked the “My child will not attend” box. Because as much as I want Sam to be part of the group and to enjoy things like field trips, I’m quite certain that right now, an unexpected event like that would just further complicate an already rough transition time. So while all of the other kids are lining up for the bus to the pumpkin patch in a couple of weeks, we’ll be staying home. Keep paddling.

We had Sam’s IEP meeting this week, too. And while the focus was kept positive and on how we can support Sam and help him make this obviously difficult transition, I got to hear his teacher say, “I feel like I need to be honest here. His social and emotional skills for a classroom setting are way below those of his peers in the class.” She’s not wrong, but…keep paddling.

I had to fill out an All About Me poster for Sam’s class. It had all sorts of prompts like “I like morning!” or “I like nighttime!” and you were to circle one based on your child’s response. My child can’t respond to most of the questions, but I gamely filled it out with what I know to be true of him. And then I got to the statement “I am quick as a rabbit!” versus “I am slow as a turtle.” In truth, Sam is slow by nature—and I’m not talking about cognitive development. I mean, he is a fairly relaxed kid who is content to do things on his own time, unlike his lightning-speed brother. But I’ll be damned if I’m going to circle an option calling him “slow,” because “slow” is used by many as a pejorative term to describe people with intellectual disability.

I know it wasn’t intended that way. It’s just a silly kindergarten activity. But I stared at those statements and then defiantly circled “I am quick as a rabbit.” Keep paddling.

And then my other child. My quick-as-a-rabbit-for-real child. My child who we learned over a year ago probably has ADHD in addition to autism. At the time, he asked to try medication. We urged him to wait on that decision, since we wanted to exhaust all other options first.

Come late summer, we were exhausted. And he was exhausted. It’s been a bit like a warzone in our house for some time now, and my dear son, whose brain fires in ways that I cannot comprehend, spends more time being frustrated and upset than he does enjoying life. Enough.

So I made an appointment with the child therapist at our medical group, who is the first step down the medication road. Theo and I met with her Thursday, and at the end of that one hour, she looked at me and said, “Your son absolutely has ADHD. We’ll run the assessment just to be sure, but I have no doubt in my mind.” She explained that there are three types: one where the person has issues with impulse control, one where the person has issues with focus, and one where the person has a combination of the two. She’s relatively certain that Theo has the latter: ADHD that affects impulse control and focus. I guess that would explain why the poor kid is so darn frustrated so much of the time.

So enough. We are honoring Theo’s request and taking the next step. I feel one part relief that perhaps our world will settle down…and one part fear that medication will dull the parts of him that I adore, which are many. But when your nine-year-old, who is at an age where life should be mostly fun, spends the majority of his time feeling frustrated and overwhelmed…enough.

So, like the duck, I will keep paddling. And while may surface may look calm, the ripples beneath are not. But maybe they will be. Maybe if we just keep paddling, we’ll reach a point where we can glide for a bit. I hope.

 

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