Tag Archives: autism

Never Mind

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This post has been sitting in my Drafts folder since October 26 of last year. The note said, “I keep thinking I will open the teacher’s report and it will say, ‘Never Mind! He’s fine!'” For the last two years, I’ve been waiting for someone to study my son and his behavior and pronounce: “You have just been imagining this! Never mind!” or “Wellll…we thought we saw something, but turns out…Never mind!”

“Never mind” wipes out the whole problem. It never existed. But I couldn’t bring myself to write about my dream of hearing “never mind” because I kept hearing “Can you come get Carlos from daycare? He’s throwing chairs and hitting the teacher.” For months, I flinched every time my phone rang at work. I saw how he kept to himself in his classroom, while clusters of kids playing nicely together swirled around him. I cringed every time he had a full-on screaming meltdown because the toilet flushed automatically at McDonald’s or the brakes on the school bus hissed and squealed.

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His pediatrician, the one who first said we should get him evaluated for autism, told me “I don’t thing he has it…but get him evaluated.” The first psychologist said, “Well, if he has it, it’s not too bad?” And another one said, “Can’t rule it out but can’t quite put my finger on it.” When I took Carlos back to the pediatrician and confessed that I was feeling overwhelmed with it, he said, “We don’t run from this.” I knew what he meant, but all I could think was, “What exactly am I running towards?”

I gave up on hearing “Never mind” and started assuming we would hear a “Yep, that’s what we’re looking at.” I wanted to know exactly his coordinates on the spectrum and what we could do based on those coordinates.

He started Pre-K and those behaviors disappeared or diminished. He sits quietly on the rug and listens to story time. He wears headphones around loud noises and they don’t bother him. He even has a friend at school. His special ed teacher stopped me a few weeks after school had begun and said, “I’m not seeing the behaviors that are mentioned in his IEP.” I braced myself to finally hear it, for her to wave her hands and say, “Never mind! He’s fine!” Then she said, “Welllll…actually, yeah, let’s keep these goals. I’ve been seeing a little more now that he’s settling in.”

ARGH. We had gotten THIS CLOSE to “Never mind!” and it slipped away.

A label shouldn’t matter–he’s still my kid. I know him better than any other person in the world knows him. Still, I wanted something to Google, something to put a check box next to all these worries so that I could tell myself, “This is The Answer. Now you can rest a little.”

So almost 2 years after this journey started, we finally got The Big Evaluation at the Marcus Autism Center in Atlanta. We submitted pages and pages of answers to every question about every distant cousin who had so much as a snaggle tooth. We sent in school forms, audiologist reports, IEP evaluations.

For two hours, the chipper autism expert talked to us about Carlos and watched him as he played. Then she spent time interacting with him–blowing bubbles, taking turns, quizzing him about letters, asking him to draw, telling jokes, giving him bottles to open, tapping his knee with a hammer, looking in his ears, giving him a rubber snake to play with, cajoling him into sitting back in the little red chair for  few more minutes–and all the while scoring his responses on her sheets of paper. After a while, he got so used to the routine that when she asked him a question and he answered it, he pointed to her sheet and said, “Put a check mark!”

We all laughed at that. He got a lot of check marks.

Finally, she tallied up a few columns and typed a little into the computer. She turned to us and said, “We’re not looking at anything on the autism spectrum here.”

Wait…whut?

“Any difference that he has is really not that significant. He’s 56 months old and on these verbal inventories, he’s scoring at about 51 months, so he’s making great progress since his last evaluation.”

G and I just sat there staring at her. Carlos pressed the button on the yellow school bus toy over and over.

She talked more about pragmatic speech (the meaning of what’s being said) and he seemed to be absolutely fine in that aspect. Fluency, the ease with which we produce speech, appeared to be the root of Carlos’ speech delay. And he’s catching up on fluency.

G asked if we should get more speech therapy than what he’s already getting and school and she shook her head. “If he regresses in any way, come back to see us, but short of that…I don’t think you need to worry about it.”

You mean, “Never mind?”

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He’s Not Going to Fall

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Carlos went to the movies for the first time tonight. Well, it was the first time he’s made it into the theater and watched an entire movie. I tried once before when he really wanted to see “Planes,” but the overwhelming noise from the previews scared the life out of him. Fifteen bucks for us to sit in the parking lot and eat popcorn that was still warm. Tonight, I brought along his magic headphones but braced myself for a meltdown nonetheless.

movie2I scored an invite through work to a sneak preview of the new Carmike Ovation theater in Athens (they remodeled the old theater on Lexington Hwy). We planned to go as a family, but G ended up taking Vivi to OTHER theater on the far side of town…so yeah. It was just Carlos and me on the red carpet. If the reporters ask, he’s wearing a shirt by Superman, shorts from the Target $5 mix and match counter, and a pair of shark sandals that light up. Oh, and he’s got on Marvel Avengers underwear, the ones with Hulk on the butt.

Ovation features in-theater dining and nothing keeps my boy happily in his seat like a big ole plate of french fries and a tall glass of lemonade, delivered right to our seats during the movie. I got myself an $8 glass of wine (served in a lovely mini-carafe and stemless glass) and a plate of Greek feta fries. I’d tell you what was on them but we were eating in the dark. There was something lemony, something feta-ish, something aiolish, and a thinly sliced herb that was probably basil. Way better than popcorn. Each wide leather seat has a table, a light, and a cupholder. I sat on the edge of my seat, waiting for Carlos to lose it.

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I leaned in close to whisper, “Do you need to go potty?” He shook his head, clamped in the grip of pink headphones. “Hold your drink with two hands, please.” He bent the straw down and nodded. His eyes never left the screen as a little bear who loved orange marmalade left the jungle of “darkest Peru” and made his way to London.

I first met Paddington Bear almost forty years ago, when my childhood friend Mollie got one straight from London when her dad flew there. Mollie had the most glamorous collection of toys–her dad was a Delta pilot so she had dolls from every country he visited. I remember her bringing Paddington to my house for sleepovers. In his blue coat with the wooden toggle buttons, and his slouchy red felt hat, Paddington was a toy from out in The Big Wide World that I had never seen.

Carlos finished his fries and let out a giant burp, then announced in that “I’m wearing headphones so I can’t tell that I’m speaking really loudly” way: “MOMMY! I BURPED!” We need to work on the whole whispering thing.

movie5I quit worrying after that and sank into this new thing that I can enjoy with my son. He’s growing up. He’s getting used to the world. For so much of his short life, we’ve kept him sheltered from crowds and noises and craziness, because they made him so miserable. But hiding from the world isn’t any way to live. It turns out, this kid loves an adventure. Instead of sheltering him from the noiser parts of life, I’m learning ways to help him cope.

He wasn’t afraid of the wild chase scene or the explosion in the kitchen. He didn’t get concerned when Paddington ran away into the rainy wilderness of London (Vivi would have been in my lap sobbing by then). He didn’t flinch at the site of the taxidermy knives or get worried when Mr. Brown climbed out on a ledge during the rescue. (Should I have said Spoiler Alert? This movie is 6 months old.)

My son was so chill about his first movie that I actually got to relax and enjoy the story, too. In the climactic scene, Paddington tries to escape the evil lady by climbing up an incinerator chute. As he nears the top and his climbing mechanism fails, I squeaked and yipped along with the kids.

That’s when a little girl in the row behind us shouted in a comforting way, “HE’S NOT GOING TO FALL!” The entire theater giggled with relief.

She was right–Paddington didn’t fall. He found a family. And the family found their joy again. When the evil lady got her just desserts, Carlos turned to me with a smile and said, “She’s the bad guy!”

He’s not going to fall. My boy is going to fly. He’ll find his way in The Big Wide World.

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Statistically Significant

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Thank you all so much for the kind messages of support that you shared privately and publicly yesterday.  I am encouraged and inspired by the stories you shared about your own experiences with kids and labels.

On the subject of labels…another label that was thrown about when we first began seeking help for Carlos was “significant developmental delay.”  He had just turned three but was talking like a two year old.  When kids his age are slow to communicate it can be due to autism, speech problems, or significant developmental delay (SSD).  Or a combination.  It really is difficult to tell whether they don’t know how to speak or don’t grok why we speak.  Maybe Peppa Pig is on and they just don’t care to speak.

keyboard-155722_1280Now, you better believe that when I heard that phrase uttered by the school psychologist, I heard something along the lines of, “crippling developmental delay,” or “life-shattering developmental delay.”  I imagined that my sweet-voiced boy would wake up one morning and say, “Hodor!” and that would be it.  “Hodor hodor hodor.”  (For those of you who don’t read/watch Game of Thrones, Hodor is a gentle giant who can only say one word.  Yep, you guessed it–Hodor.)

After a few days of being afraid to even look at the paperwork that had Significant Developmental Delay listed as a possible situation, my lifelong curiosity about words broke through the blaring sirens of panic echoing between my ears.  I parsed the phrase.

NOUN:  Delay–yeah, I get that.  He’s behind on the sentence making.

ADJECTIVE:  Developmental–okey doke.  He’s hit some milestones but others are still ahead of him.  He’s developing at his own pace.

INTENSIFIER ADJECTIVE:  Significant–ugh.  That’s where life implodes and all I can see is a wall of white light and Carlos living in our basement for the rest of his life.

In my English major brain, “significant” means:  consequential, earth-shattering, eventful, historic, momentous, monumental, tectonic, weighty.  (Thank you, Merriam-Webster thesaurus!) When I mentioned my fear of this label being stuck on our kid, G and his scientist brain said, “Wait a second!  ‘Significant’ means something worth noticing.'”

WUHT?

He started in on statistical significance, standard deviations, black magic statistics, Greek symbols.  But he was right.  “Significant” doesn’t mean cataclysmic.  If I skim all the way down to meaning #5 in the dictionary, significant means “sufficiently large in size, amount, or number to merit attention.”  Well, shucks.  That doesn’t say anything about my basement.  The synonyms for this meaning are downright cuddly:  biggish, healthy, respectable, sizeable, substantive, good, tidy.

Would I have gotten less freaked out if the form said “Biggish Developmental Delay?”  Probably.  This lesson in semantics reminded me of the danger of labels for people:  words mean different things to each of us.  A school psychologist means one thing when she says “significant” and a mother hears a different thing, while talking about the same tiny person.

My friend, Wise Heather, shared an interesting article today:  10 Scientific Ideas That Scientists Wish You Would Stop Misusing.  In light of my struggle with significant, number seven struck a chord.

7. Statistically Significant

Mathematician Jordan Ellenberg wants to set the record straight about this idea:

“Statistically significant” is one of those phrases scientists would love to have a chance to take back and rename. “Significant” suggests importance; but the test of statistical significance, developed by the British statistician R.A. Fisher, doesn’t measure the importance or size of an effect; only whether we are able to distinguish it, using our keenest statistical tools, from zero. “Statistically noticeable” or “Statistically discernable” would be much better.

For the rest of this journey, I will be cool if my son receives extra help at school because he has a Discernable Developmental Delay.  I want him to be comfortable in the world.

With the progress he’s making, I’ll also be cool with buying him a thesaurus for his fifth birthday. Either a thesaurus or an erector set because Dude is wild about the mechanical toys!  I find that…significant.

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I’m Going to FIX This.

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memory“Point to the picture of something we eat.”  Carlos pointed to the picture in the middle of a set of three and said, “Apple!”

“Which one do we wear?”  He pointed to the right one in the next row and said, “Hat!”

“Show me an animal.”  He chirped, “Frog!” and pointed to the right card.

“Something we ride?”  “Scooter!”

I shuffled the array of Memory cards on the dining room rug.  “Carlos–find something we have at a birthday party.”  He searched through the rows of pictures.  “Pwesents!”

“Wonderful!  Can you find something else that we have at birthday parties?”  I tried to light up the little picture of balloons with the power of my stare.  He didn’t notice it.  Finally, after he had lost interest in that question, I said, “How about the balloons?  We have balloons at birthday parties.”  He grabbed up the balloon card and pressed it together with the picture of presents.  “Ballooooooons!”

I looked up to find that G was watching us from the doorway.  He had gone in to work for a few hours while I stayed home with Carlos.  I told him, “Hey, watch this!”

I pulled a little alphabet abacus kind of toy over to Carlos and said, “Carlos?  What letter is this?”

“B!  Buh-buh-buh…”

“Yes!  What letter is this?”

“F!  Fuh-fuh-fuh…”  His attention wandered back to the Memory cards. The toy has a little row of people at the bottom, each with a different numeral from 1-10 and a different facial expression.

“Carlos?  Can you find someone who is sad?”  He looked up and down the row then poked an image of a girl with a downturned mouth and a tear spouting from her eye.  “Nine!”

“Yes!  Good job!  Can you find someone who looks angry?” He considered carefully then answered, “Six!”  Yep.  That boy’s eyebrows came together in a sharp V shape and his mouth was a straight line.

“Yes!  He looks angry.  Can you find a silly boy?”  He pointed to 10 and mimicked the way the boy was sticking his tongue out of the side of his mouth.

That made G laugh. Carlos hopped up from the rug and ran to give G a hug.  That was my sign that our game had come to an end. After Carlos wandered off into the den with the stack of Memory cards crammed into a circus train caboose, G gave me a hug and asked if I was OK.

I said, “I read that report from his last evaluation and got a little nervous about today.” “REALLY?”  G snickered and nodded at the dining room.

In the two hours he had been gone, I had turned it into a learning lab.  We had played hide and seek in the big cardboard box (cooperative play).  We had played Memory (receptive language).  We had stacked objects into the train cars (fine motor) and climbed in out around and through the box (gross motor).  And all of this while he was bare ass nekkid because it is TIME to get this potty training thing locked up.  I even had Sesame Street playing in the other room for good measure.  I had the day off and I WAS GOING TO FIX THIS.  Whatever it is.

Remember that story I wrote a while back about Carlos having some kind of speech issue–“How Could I Have Missed This?”  Today was Chapter Two.  Today was the day we took Carlos to the Marcus Autism Center for testing.  There–I said it.  I said the A-Word.

And guess what?

Maybe, maybe not.  If so, not very.

Because, y’know, he’s three and it’s hard to tell at this age.

In the end, the conclusion was “Keep up the good work.”  And we’ll go back in six months and see a developmental pediatrician.  By then I will either have chilled out a little, or sold the dining room table to buy more flashcards.

As his mom, I am going to do everything in my power to get him what he needs.  And I’m going to do everything in my power to understand what is–and isn’t–in my power.