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Beyond typical fidgets

Zippy meets me at the cafeteria door at 4:20, wide eyes and pale face. I told him I'd be there at 4:00 today but got delayed; he'd been staring at the clock for 20 minutes, waiting, worrying. When I hugged him, I could feel his little heart pounding in his chest.

The phone rings and the Rec director is talking excitedly. All I can discern is the word "thunderstorm" and my son crying in the background. He's inconsolable because he overheard an adult mention that there might be thunderstorms in the forecast. It takes me 5 minutes of me repeating "You are safe. Hear my voice. You are safe..." until he stops crying...but I know I'd better hurry from work to get to him, because he doesn't believe he is safe. He is beyond reason right now. And sure enough, when I arrive, he's sitting on a log near the door, next to a blessed 4th grader who is holding his hand and trying to soothe him. When I hug him, he melts into tears. His body shivers despite the 60 degree temperatures.

Sitting on the beach he overhears a mother yell to her child to drink more water so she doesn't get overheated. He runs to me and thrusts a water bottle into my hands, shoves it up to my mouth, and yells "Drink it, Mommy, because I don't want you to die!" 

The kindergarten teacher emails me to tell me that the accommodations we put in place for Zippy's "active body" are no longer effective. He's out of his seat every few minutes, walking around the class and talking nonstop. He puts his hands on the other children often, not in a threatening way, but almost to reassure himself that they are solid and in the same space. He wanders to the window every now and then to check the sky, to make sure there are no thunder clouds.

It's a rainy Sunday afternoon and all I want to do is read a book in a quiet room. But Zippy is literally bouncing his body off the furniture and the walls, chasing the cats until they cower behind the chair in the corner, spinning in the middle of the living room carpet and talking incessantly. It's pouring and cold outside, but we're going out there in a moment anyway for fresh air. Then we'll play a board game until he starts smashing the pieces around the board. We'll try to bake cookies or play with Legos, each activity lasting about 5-8 minutes until he's up and bouncing around again. My book sits unopened on the end table. 

Life with a worried, antsy child is not easy, but it's all we have known for the last few years. When he was younger, we assumed it was a phase brought on by transitions -- potty training, preschool, then our move. We thought he was immature and just needed to grow out of it. We have joked that Zippy is our "blurry child" because he never stands still long enough to take a photo. In fact, his nickname here -- Zippy -- comes from his abundant movement and energy since the beginning of his life. He never stops. And the more tired he gets, the more he spins. He literally spins! Until he falls to irrational wailing or crashes into sleep. At home we have found ways to add structure and security for him -- he sleeps in Happy's bed, for instance, and we tell him our daily schedule so he has a general idea what to expect. And as he gets older, we can see visibly how hard he's working every day to maintain composure. When he gets home from school, he is completely wiped out.

About a year ago, the preschool noted some unusual behaviors that seemed "beyond typical fidgets," so we called on Child Development Services for help. And so began a year of "we're not quite sure what to diagnose here, but it's definitely something." CDS hinted at all sorts of possibilities, everything from social-emotional delay to sensory integration disorder to hearing problems to ADHD to autism. Zippy has had a developmental delay IEP in place in kindergarten, but because he is academically achieving -- and way above grade level -- the school hasn't offered any additional services without us getting a medical diagnosis. I'll spare you the full details because even though I often felt frustrated, confused, intimidated, I know our burden has been light compared to what some of my friends have carried for their children. (Someday we'll talk about all that is messed up about the special ed process in public schools. And hopefully we'll be able to talk about some stuff that works, too.)

Finally on Friday afternoon, we received from a child psychiatrist an official diagnosis of ADHD and anxiety disorder. And despite learning that our child has a disability* that is "beyond typical fidgets," I feel tremendous relief...because our child has an actual diagnosed thing. His brain and body are wired differently, we know that for sure, and it's okay. Now we know what we're dealing with and we can move forward.We can help him. We can help us.

I am a worrier by nature. I come from worriers, too. But in general, as I have aged, I have been able to find ways to cope with anxiety when it strikes: deep breathing, walking, prayer and meditation, writing, talking through the options or worst case scenarios. These are all ways my adult mind deals with worry. But a small child's mind, especially one that's thinking ahead of most kids his age -- sometimes ahead of the adults around him -- doesn't always know how to cope. We're fortunate that Zippy is so verbal because he can now tell us when he feels afraid or too juiced. Now when I think back on his infancy and early childhood, the way he fought sleep or woke screaming out in the night...he's been afraid. And my heart breaks thinking about that. My stomach aches when I feel him shaking in my arms now because he's worried about a doctor appointment or has seen an image in a movie that freaked him out.

As I have sought answers for Zippy and our family (and his teachers), I have faced a lot of my own fears and insecurities: What have we done wrong with this kid? Was he in daycare too young; was he traumatized by that damn babysitter's dog who bit him? Have we been too lenient with screen time? Have I babied him too much so he thinks it's acceptable to throw a holy fit? What have I said or done to make him so afraid of xyz? Did our move really screw him up psychologically forever? Just a sampling of the questions, sometimes harebrained, that I've wrestled with this year.

I know that I am more protective of Zippy, a bit more fierce on his behalf than I am for Happy. Maybe it's because he's younger, or maybe it's because I've known from the start that there's something different about him. I try hard not to do things for him or make excuses, but I do acknowledge that we have all changed our own lifestyle and patterns to accommodate his energy and worry (before we knew how exactly to label it). This is the first time, as I process this diagnosis, that I have let myself admit how difficult it has difficult it is and will continue to be. How very carefully I choose my words and explanations when I'm around him. How many knots exist in my own neck, shoulders, stomach constantly as I anticipate the next call from school or after-care, or wait for him to melt down because we have to run an extra errand on a Saturday afternoon, or endure those stares from other adults in a grocery checkout line when he's rolling around on the floor. I am constantly anxious about my child's anxiety! Ha. How's that for irony?

So here I am, admitting that this is really fucking hard. I'm breathing out, finally, after all these months of holding it in.

But... When we stop at the cove trail so he can burn some steam and I watch him crouching over a pile of periwinkle snails, studying every bit of them and setting up little colonies so they'll be safe... When I hear him and his brother giggling over an inside joke that developed in the wee hours of the morning while they cuddled in the same bed... When his friend runs to him on the playground and they embrace and his friend says Zippy "never has to ask me for a hug because I love him so much"... When I answer 100 really deep-thinking questions as he tries to find logic in an illogical world... When I swirl and twirl with him in our living room, or when I rub his back for 20 minutes to calm him to sleep in the evening... When I gaze into those giant, soulful eyes and know that without question his heart is kind and gentle and earnest...

Over and over and over again I say thank you thank you thank you for this beautiful, bubbly, brave, brilliant person who makes every day unique and exciting and full of life and love. His brain may be wired differently, his body may be impulsive and constantly moving, but this makes him who he is. And he is perfect.

*In the earlier draft of this post, I used the word "disability" in a couple places, then re-thought it because I know so many other mamas whose kids have disabilities so much more severe than this. I felt insensitive, hyperbolic. 


  1. Tory,

    Remarkable writing by a remarkable woman. "Kind and gentle and earnest" Zippy has your lovely qualities along with his special uniqueness. He is so much more than his disability and so fortunate to be part of such a loving and accepting family which allows him to be who he is. Bravo for your honesty, compassion, and advocacy with and for Zippy.

    With love and admiration,

  2. I can relate to every word! Thanks for sharing,know that you are not alone!
    Erin(T&W's mom)


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