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?

*

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.

*

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?)

*

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.

*

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.

*

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

*

Your brother loves you, dude.

*

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.

we are into some science

Chipmunk will be seven next month, and part of his EXPLOSION OF READING (Captain Underpants) has involved revisiting some older toys that he didn’t really understand when he was littler. Last week I was collecting some toys in my garage to donate. He found his old Giant Evolution Timeline and went wild for it. He hadn’t seen it in a few years so the whole thing was new to him, and his phonics skills are perfect for sounding out giant ridiculous dinosaur names. It’s been stretched across my house since last weekend and his favorite thing to do right now is read me the captions.

I love his sense of humor and the things he gets excited about. For a short while his reading was very rote, but once he got comfortable he started “acting” the words and really emoting. It’s rare to catch him this unfettered in his nerd-ery and I adore it. I see so much of my own awkwardness and passion in him and I want him to own it more proudly than I ever did.

This kid is just so damn cool.
timeline

and then words happened

Over the past three months, Chipmunk has gone from efficient recitation sort of reading to full blown reading all the things, with inflection and punctuation and goofy voices and omfg he’s reading. The key with him seemed to be figuring out that he didn’t need to read chapter books. He could read science books and signs and subtitles and video game instructions and every damn thing ever. Which appeared to get him over that hump of “I don’t waaaaannnnnttttt to.” He’s halfway through first grade and he’s reading at an upper second grade level in a small group with two other kids. I’m so happy the school is able to accelerate him like that. I am giddy.

I started reading early and read books all the time. I read in the swimming pool, in the bath tub, in the car, at the dinner table. I read everything I could get my hands on. My secret heart’s wish has been for Chipmunk to develop a love of reading, but I haven’t pushed him–especially since he seems to skew more toward science and math. But holy cow, he’s into it now. He’s not really into stories that much, but any little thing he reads thrills me. It’s the coolest thing to share with him so far. (Sharing interests with my kids is one of the best perks of parenting. The Aquabats! Riding roller coasters together! Watching The Sound of Music! Frozen yogurt!)

READING.

Tonight, he took things to a level I really didn’t expect. I asked him to stop playing Kinect so he could clean his room for an hour and he flipped out as he always does when I suggest any amount of room cleaning. I started to get angry and dive right into yelling psychomom mode when I glanced at a yellow notepad on the desk. My mom’s always used these yellow notepads. Ever since I was a little girl. They’re symbols of organization and order and reason.

“I have a special job for you,” I said, as I wrote down four tasks. I told him that if he did each of the four things I wrote down, I’d give him 50 cents a task:

  1. pick up Lego minifigures
  2. put books on the bookshelf
  3. put the DVDs in the DVD box
  4. pick up the extra toys

“What’s my mission?” he asked, suddenly excited. SCORE. SCORE A MILLION POINTS FOR WORKING AROUND STUBBORN MCASSHAT’S AVERSION TO CLEANING. He ended up finishing three tasks (running to me with the notebook and pen to check each off) before deciding to take a “break” for an unspecified amount of time, which is still totally a win in my book because after the first three or four times I’ve gotten totally sick of organizing Lego bricks in order to vacuum the small rug in his room.

Anyway, later on, he took the notepad over to me and asked, “Can I keep this?” I asked him why and he said, “I want to write all about my life in it.”

I stared at him trying to keep my shit together and eventually managed to squeak, “I can buy you a diary or notebook or journal if you’d like, that would work better and it wouldn’t rip.” BE COOL. BE COOL.

He said that’d be great (!!!!) and ran off with a pen and the yellow notepad to make a list of characters, enemies and powers as part of the story of his life. Then he gave each one a point score on power/awesomeness. (I scored 20 out of 100.) (His brother scored zero.)

HE IS WRITING. FOR FUN. WRITING THINGS DOWN. IN A NOTEBOOK. I had to make him stop writing and go to bed eventually. I finally caved on playing it cool and squeezed him tight and said, “You know, Mama is a writer so it makes me very very excited that you are enjoying writing things down.” He said goodnight and then whispered to me in the dark, “I can’t wait to write down places tomorrow.”

that whole kindergarten thing

From getting into the school we desperately wanted to landing a teacher who meshed incredibly well with Chipmunk to a class full of the absolute sweetest little kids you could want your child around, Kindergarten went a lot better than I expected.  When your kids start real school for the first time, it’s far more stressful than what you expect during those baby days when everything is so immediate and tiny and poopy.  Getting ready for school nearly drove me over the edge with all the IEP stuff and allergy-fretting and just me fretting in general like its my job.

But dude, my kid.  He loved school from start to finish.  The structured but very busy arts-focused environment was perfect for him.  The drive across town didn’t make us crazy (although he will be taking the bus next year now that I’m confident in his ability to function and follow directions.)  He grew about a million inches and developed a lot of broader interests (particularly in people farting, getting married, marrying toilets, being toilet-heads and saying “what the!”).  He made friends and tolerated me chaperoning a lot of field trips and participated in two whole plays by standing completely still and eyeing the audience suspiciously.

August 2011

June 2012

Kindergarten?  Pwned.

I just can’t believe how great it’s gone and how lucky I am to know this kid.

six

Oh Chipmunk.  This week we’re moving, and it’s a week of upheaval and stress and exhaustion and right smack in the middle, today was your birthday.  You went to school and I came by and watched your class sing to you, and you guys ate Rice Crispy Treats and you chased your friends around the playground with your party hat on your face like a beak.

One of your friends broke the hat, and you cried, and when he got in trouble he cried too, and then he came and embraced you, and a bunch of your little girl friends wrapped you both in a group hug and I nearly stumbled, trying to hold onto all that love and you.

It wasn’t the easiest day for you, but you were so good at your allergy shots, even when your arms got itchy.  And later, you put up with having to hang out at your new house for a while.  You went to sleep in a mostly-packed room, spending your sixth birthday sleeping for the last time in the only room you can remember, where we’ve lived since you were 18 months old.

The future is bright, my son.  You are bright.  The night you were born, just after the first hour of the 11th, I stopped feeling tired and sore and only felt elated to meet you.   You stuck your tongue out again and again, and being a new mom, I stuck my tongue out at you in reply, and we made silly faces together.  I didn’t know you were hungry, that your tongue was saying feed me, feed me.  Even now, I’m still learning.  I don’t always know what you mean, and I wish I could make you happy all the time, but sometimes you’re unhappy and sometimes I’m unhappy but oh, little boy.  When you’re in my arms, all pokey and boy-shaped and starting to be kind of stinky, there’s nothing better.  When you reach for my hair to rub it every night before you go to bed, because you have to, I’m glad it’s my hair that you’re reaching for and that I’m your mama.

I love you, so much.

Happy Birthday.

mama and babychipmunk and Legos

What does stimming look like?

It started with “hulking out”

I spent so many hours Googling videos of stimming when Chipmunk was two.  I’m serious.  Hours.  It was so scary seeing him seemingly possessed by these unfamiliar, repetitive movements.  Every single day–during play, during mealtime, in the bath–he’d stim.  He’d squeeze and arrange.  Squeeze and arrange.  The most upsetting thing was that I couldn’t find any kids online doing the exact same thing.  It would be similar sometimes, but not similar enough to soothe my upset (hormonal, pregnant) brain.  When his first 15 minute appointment with a developmental pediatrician ended in a curt non-diagnosis of, “No, he doesn’t have autism,” it was even scarier to me.  Then what was it, if not stimming?

A couple more videos for your reference.

Self stimulation or “stimming”

stimFour years later, we know that’s exactly what it was.  And I understand now that stims can take many forms.  While hand flapping is one that nearly everyone recognizes as a sign of children on the autism spectrum, stims can be much more subtle that that.  They can be vocal, they can involve movement, then can be an imperceptible tensing of a muscle.  My son stims with his toys and obsessions, almost as if he’s playing.  It started with cars and French fries (admirable obsessions), and progressed to dinosaurs and other small toys, and then to Legos, and then went a little freestyle with his hands alone.  His Star Wars hands.

We know not to worry about his stims, and the only time they’re “controlled” at all is at school, when he’s told that his Star Wars hands have to be quiet so they don’t bother his friends.  He can move his hands and squeeze things and do what he needs to do as long as he doesn’t growl and whoosh loudly.  (It’s pretty damn loud.)

If you think you’re observing stimming behavior in your child and you haven’t had an evaluation or gotten a diagnosis yet, my advice is to film your child whenever you can.  Try not to draw too much attention to it or make a big spectacle out of it.  Just grab a small camera (your phone is fine) and save those videos.  I uploaded them to a private account that I could link doctors to.   Every doctor we’ve seen over the past few years has been very grateful for visual documentation of behaviors that have continued from 18 months to now, at almost six-years-old.

Evolution of stims

I took this video today, when I was really surprised to see a lot of stimming crop up while we waited in the waiting room at the immunologist.  Chipmunk is severely allergic to oak and it’s oak season in a major, ugly way around here.  I’ve noticed that when he’s itchy and uncomfortable and his allergies get bad, he stims more often.  In this video, you can see a subtle, body-clenching, breath-holding stim (every time the Angry Birds hit the pigs.)  Looks like we have another stim-obsession correlation on deck.

 

2013 Update

Chipmunk still squeezes/stims. We’re seeing the Angry Birds one continue, and when he’s alone in his room he’ll arrange and squeeze things like Lego Minifigures and other small toys. What’s interesting is that his Star Wars hands have completely phased out. He’ll make noises VERY rarely now, but he will tense up and response with his body (not his hands) to certain visual stimuli (the other day, it was birds swooping).

He’s been stimming now from 2007 to 2013. He can talk about it a little, but I don’t bring it up often because it seems to embarrass him and I don’t want him to be embarrassed by something that’s natural and something that obviously helps him collect himself, recharge and calm down.

Concerned about your kid?

Keep in mind that repetitive movements, quirky movements, all sorts of things can be something or they can be nothing and they’re not always related to the autism spectrum. It’s pretty hard to tell the difference between stereotyped movements and tics without a professional’s help, and it’s also pretty hard for a professional to get a handle on your kid with just a small window of observation.

My recommendation is to film behavior when you can to help a professional make a diagnosis. My other recommendation is to get into Occupational Therapy before you have a diagnosis and even if you’re not sure you’ll get one or need one. OT is a playful, hands on approach that can help your little one with sensory issues and motor skills and breaking out of behaviors (if necessary, such as when they interfere with play/routines). While an OT won’t diagnose anything beyond sensory issues, he or she can often give you thoughts on the behaviors observed. They see a huge variety of kids.

Good luck. I’d love to hear about your progress.