tunnel vision

My son is seven and a half. Which means I’ve spent six years being aware that he’s different. His different-ness has had many labels. He’s one of those alphabet soup kids, and at seven, I still don’t really know exactly which letters make up his anything-but-typical little brain. And that’s okay.

I’ve been going to ABA therapy with the boys for a couple of months now. I love it and I hate it. I love that what I’m learning really can and will help him. I hate that I’m the one in charge and that it’s so damn hard. I hate that what a lot of this boils down to is that I have to structure our lives more. I hate wondering how many of his behavior issues are the result of poor parenting choices. (What if we’d set different ground rules, what if we’d been more consistent, what if?

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Last Friday I took the boys to the Magic Kingdom. You see, Disney World has always been our escape. It’s rarely stressful. The kids go bananas. I feel like a little kid myself. It’s freaking Disney World, dude. How can you drive under the entrance and not feel like you’re on a one way street to paradise? The place makes me so damn happy.

Until I’m hissing at my kids to just smile for one second just both of you — no seriously you need to both LOOK AT THE CAMERA, LOOK AT MY FINGER HERE, JUST LOOK AT THE HOLE IN THE PHONE — I SWEAR TO GOD WE ARE TAKING THE MONORAIL BACK TO THE CAR AND DRIVING HOME AND GOING TO SCHOOL IF YOU BOTH DON’T LOOK AT THE CAMERA.

After six hours of pushing a nearly five-year-old in a stroller and enduring the defiant and teenager-y behavior of my seven-year-old I was totally that lady ruining the magic and probably causing Tinkerbell to hemorrhage in one of those cool tunnels under the park. I do believe in fairies, I do, I do, but my patience only goes so far and it grinds to a halt right about when you tell me I’m the meanest mom ever. AT WALT EFFING DISNEY WORLD.

But damn it, I did it. I took my kids by myself. Our strange triangular family lived through it. We even stayed at a hotel the night before and actually had fun there and probably didn’t wake all of the neighbors up at 7 am.

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My son’s ABA therapist said, “Honestly, he seems more ADHD and Oppositional Defiant Disorder to me.” We talked for about an hour, tossing around his behaviors and characteristics. Some are spectrum-y, some really aren’t. The kid is a conundrum. What we know for sure?

He’s quirky.
He’s very controlling.
He’s very defiant.
He has a super low frustration tolerance.
He has major sensory issues.
He stims.
He struggles with transitions.
He’s gifted (by the school system’s definition).
His interests are narrow (space, deep sea, Diary of a Wimpy Kid and Beyblades at the moment).
He plays reasonably well with kids but doesn’t maintain or develop friendships.
Other kids report that he’s annoying.
He’s uncoordinated.
He’s sensitive but not empathetic.
He has trouble articulating his emotions.
He’s violent toward his little brother.
His temper is OMFG.

I can’t talk about what’s “wrong” with him without talking about what makes him so special.

He loves playing the drums.
Music enthralls him.
He reads voraciously.
His memory is uncanny.
He would run until he passed out if you let him.

He’s fascinating. When asked if he likes space of the sea more, he said, “Well we’re going to know everything about the ocean some day, but we’ll never know everything about space, so I like space more. For instance, in 2016 because of the Horizon we’ll have new pictures of Pluto that I have never seen.”

I feel like a jerkass when I list his struggles. But they’re not faults they’re just struggles — they’re just part of him. And when he’s horrible to me it’s not because he doesn’t love me and it’s not because I’m a bad mom and it’s not because I’m doing everything wrong. (Right?)

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Oh my little love, you’re are so special.

And I get so mad when you’re mean.

I want you to love me as much as I love you. But you do — I do know that — and it’s not your job to show me that, it’s your job to be a little boy.

It’s my job to love you and love you and love you and I do, buddy.

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It’s so much sometimes, and then it’s nothing at all and we’re on Space Mountain and you’re laughing and later you ask, “Did you hear me say AHHHHHHHHHHHHHHHHHHHH-SOME?”

You want me to know the things you know and love the things you love.

I don’t think I can do it and then you climb into bed with me and ask if we can have cuddle time and you start talking in your staccato way, clicking at the end of your sentences and I think for a while that I can understand, just a little, what your typhoon of a mind is like and you’re so tall now, and kind of hairy, and there’s no way you were ever that crying newborn who wouldn’t latch, that curly-haired infant with a big smile, that solemn toddler lining cars up, my baby, my baby.

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ADHD. ODD. PDD. TS. SPD. OCD. ASD. IEP. SLP. OT. Uh.

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Your brother loves you, dude.

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I haven’t cried about all of this in a while, so I do. It doesn’t help that much, but it eases some of the tension in my chest. Pity party of one hiding in the bathroom at the children’s rehab center, recalibrating, processing, psyching myself up for the pitch black touch tunnel that is our future together, me and my boys.

As a little girl, my knees scraping the nylon carpet and my socks slipping off, I always loved the touch tunnel best of all.

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Comments

  1. Absolutely beautiful. Also, the touch tunnel rules.

  2. He’s so lucky to have you as his mama.

  3. Amanda Gee says:

    Dude. Amazing piece.

  4. Beautiful, Maria. Thanks for sharing your guy with us.

  5. I’ve missed your writing. I feel you in my heart, mama.

  6. Anne DiNapoli says:

    So nice to read beautiful words from an amazing mother. I did the single parent Disney thing about a month ago. Amazing how the happiest place on Earth can turn you into one mean mama, and your kid, the crankiest on Earth. I committed to only remember the magical parts of the day, and I’m pretty sure my 5 year-old seamlessly did too.

  7. Reading this – all of it – gave me the same familiar tightness in my chest that you talked about, prompting me to go through my own mental list of what my son is and isn’t, how he’s challenged and how he’s wonderful, how it all churns together and twists me in knots…

    Anyhow. Great post.

    This stuff is never easy, is it?

  8. I’ve followed your blog on and off (only off because I haven’t had internet consistently) and every time I visit and read your posts about your boy, it amazes me how I feel like you are in my head. You have a true gift for putting all of the complex emotions that are parenting into words. My son is 8 and ha many of the characteristics that you talk about in your son. He has never been evaluated and i don’t know know that he would even be “diagnosable” if you will, but we struggle and it’s nice to hear that we are not alone. Thank you for your honesty and for sharing your stories.

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