7/52

I watch as the teacher hands my toddler a puzzle piece shaped like a guitar, and obediently, he places it in the guitar-shaped hole. She picks it back up and this time, pretends to strum it. He squeals with glee at this because she has inadvertently hit upon his absolute favorite thing in the world these days. He takes the piece from her and strums away happily. She lets him do this for a minute or two and then shows him a bucket to drop the puzzle pieces into. He cooperates for a couple rounds of this then goes back to pretend strumming.

“See? That’s called perseveration.”, she says matter-of-factly, turning toward me.  “He wants to keep going back to the same activity. You can let him do things for awhile, but when he it reaches the point where his play non-productive, you need to redirect him.”

“He does REALLY like playing guitars these days,” I reply, a bit taken aback by the term “non-productive” play, which, frankly, sounds as absurd as “jumbo shrimp” to me.

“Yes, but did you see how I couldn’t get him to engage in another activity?" she asks.

I nod, my mind wandering now as she continues her work with Jonathan.  I realize I am feeling sad for my baby who is probably confused as to why this lady I let into the house to play with him isn’t letting him strum his guitar anymore after showing him how to do it in the first place.

At the same time though, worry is creeping in and I am remembering another toddler I knew who concentrated on one thing at a time for FAR longer than this one ever did … and still does.

The two are brothers.

When my oldest son, Ben, was just a little more than a year old, I casually mentioned a few concerns to our pediatrician, but, as good a doctor as he was, he was about as non-alarmist as they come. (I nicknamed him “Dr. It’s-just-a-flesh-wound”) I remember him waving his hand at me dismissively and saying it was nothing. I wanted to believe him, so I didn’t bring it up again.

In many ways, my first-born was kind of extraordinary. He stood on his own, without holding on to anything, when he was six months old. He walked just two months later and took off running two months after that, the shortest little thing on two feet you ever saw.

He knew all his letters, shapes and colors before he was two.  He could recognize a piece of music after hearing just a couple of notes. I have to admit, my husband and I kind of thought we either had a genius on our hands or that we, as complete rookies, were pretty much rocking the parenting thing.

There was another side to the story though.

Like his baby brother, he was a late talker -- probably close to two before he really picked up words.

When he did learn words, he would say them over and over again. “Light” was one of his first ones and I started dreading walking by any light switches because if he wasn’t allowed to stand there and flick them on and off for 20-25 minutes at a stretch, he would scream.

“Whoa Whoa” was another, his word for the “round and round” motion a fan makes. I had to explain to friends we had just met that the reason he really wanted so desperately to get into their backyard was so that he could stare at the fan inside their heat pump. There was a period when he was two years old where he would seek out heat pumps everywhere we went. His favorite part of a zoo trip at that age was finding a giant, industrial sized one near the lion exhibit.

Everyone thought it was funny and quirky.  We even encouraged it, making him a book of fans and lights cut out from catalogs. He slept with it at night.

It wasn’t *just *the obsessions. He also seemed to be ultra sensitive to his surroundings from the time he was just a few months old.  Restaurants were notoriously a nightmare scenario for us. It seemed he just couldn’t handle any situation that was overly loud, crowded or echo-y and would just cry uncontrollably. My husband and I got used to one of us having to take him outside while the other got food boxed up and paid the bill.  

We stopped eating out for awhile.

We didn’t even realize this behavior wasn't normal until we had a second child. Simon could happily sit through dinner at a restaurant or could tolerate a walk through a Yankee candle store or a visit to an indoor pool, all places that made my first son at the same age completely lose control.

Those specific quirks eventually faded, but gave way to others. For instance, there were a few months when he was three where he wouldn’t wear shorts or short sleeves because he didn’t like the way his arms and legs felt uncovered. I have pictures of him playing on a beach in south Florida with sweatpants and a long-sleeved t-shirt on. He wore that outfit the entire trip.

The obsessions continued and do to this day. Periods of time throughout his eight years have come to be defined by whatever he is into at the time. Keys, violins, volcanoes, clocks, space, bugs, fish, cars, Star Wars, math, sharks, maps, flags, money, football... the list goes on and on.

During these phases, he rarely talks about anything else and will often start talking about the topic as soon as his head leaves his pillow in the morning. Often, an unrelated question from someone will be greeted with a random fact about whatever he is into. For instance,  I may ask, “Ben, would you like syrup on your pancakes?”  and get “Did you know that the whale shark is two and a half school buses long?” as a reply. Eventually I will get an answer to my syrup question, but not before learning three more facts about sharks.

Every year at school conference time,  I ask his teacher if I should be concerned -- I’ve asked about the obsessions, about his one-track-mind, about his fear of fingerpaint in preschool, about how he fidgets and gets distracted, how he can't carry on a real conversation. 

Year after year, one teacher after another assured me he was fine, progressing, participating, intelligent, a pleasure to have in class and well-liked by his peers... all the things you want to hear from teachers.

I was starting to feel like a paranoid, crazy mother,  I decided to try to quiet the voice inside that was telling me something was different about Ben because, after all, teachers were trained to spot problems, not me. They’ve seen every issue there is including, of course, the one that was always lurking in the back of my mind and the word every mother these days fears.... autism.

Teachers know it when they see it and they didn’t see it in Ben.  I should have been relieved.

I managed to push it out my my mind for most of first grade. His teacher that year had no complaints about him, he was thriving academically. He seemed to have friends.

Second grade was a different story, I received an email on the second day of school from his teacher informing me that Ben seemed to have trouble sitting still, tapped his fingers and his pencil constantly and was distracted. I immediately lashed out. The second day of school? Really? How could she even know him yet? Why couldn’t she let him stand and work like his first grade teacher had? Or gently remind him not to tap his pencil?

The emails came fast and furious the whole first half of the year… poor organization, his desk is a mess, can’t find his supplies, didn’t finish his classwork, didn’t follow directions, illegible handwriting, had to miss playtime to redo the assignment... every time the teacher’s name appeared in my Yahoo inbox, I internally cringed as i clicked on it.

I feared she was a Ritalin-happy teacher who couldn’t handle little boys and that Ben was just one in a long string of students she wanted to quickly and cleanly slap an ADHD label on. And THAT, for sure, I was having none of.

When I went in for the conference, I was prepared for a fight.  Instead, I found myself sitting in a child-sized chair at 8:30 in the morning, across from the teacher who very calmly told me Ben was one of the smartest children in her class and one of her best readers. She continued, “He has an astounding vocabulary”...  “an amazing mind for mathematics!” The glowing compliments just kept coming. I was confused... why was I here again? What about the 27 emails complaining about how distracted and unorganized he was all the time?

“He’s easily distracted and I think he would really benefit from a checklist to remind him to stay on task.” she informed me.

I breathed a sigh of relief and thought, “Wait, that’s it?” Of course, I agreed to the checklist.

But deep down, I knew that wasn’t it.

Second grade was also the year I discovered Ben didn’t understand friendships. He would call other children friends and then I would witness them making fun of him directly to his face. Ben would be completely oblivious. Few things are more heartbreaking to witness. We had one of these “friends” over for a playdate once and the mean things I overheard him say to my son brought tears to my eyes. It became clear to me that there was some kind of social disconnect going on.

He may have been excelling academically, but socially he was floundering...  

My mind stops wandering and I redirect my attention to Jonathan's speech session. The teacher has been doing an artfully choreographed tap dance for the last several weeks hinting that maybe he’s more than just a late talker.  I’ve had enough of the dance.

“Be honest with me…” I hesitate for a moment before I continue. “What’s going on here? What else should I be worried about?” I brace myself for her response.

“Well....” I can tell she is mentally sifting through what she is and is not allowed to say to me. Stupid lawsuit-fearing world we live in. I wish she could just level with me and be done with it.

“There are a few red flags for some things... we’d have to bring in a psychologist to make any kind of diagnosis though.” she replies.  

This is when I decide to tell her. 

I take a deep breath before I begin. I've become used to people telling me my worries are unfounded, but somehow I can tell THIS is someone who might actually hear what I'm saying and give me the answer I have needed to hear, but simultaneously don't want to hear.

“You should know, he’s a lot like my oldest son.” Then, I tell her about Ben. I tell her everything. The fans, the lights, the screaming fits, the obsessions, the friends. She listens, REALLY listens, and offers the occasional careful comment. She also suggests I schedule a consultation with our pediatrician.

It’s surreal to find yourself in the pediatrician’s office without a child in tow. But that’s exactly where I was one evening two weeks later. Since we had switched to this doctor a couple years prior, I had been vaguely hinting at my concern (so Ben wouldn’t catch on) at the well-child appointments. He had encouraged me to schedule a time to come in on my own a few months prior, so my visit came as no surprise.

As he flipped through Ben’s records, I scanned his office. My gaze fell upon family photos lined up on the windowsill. There were pictures of his granddaughters. Smiling, beautiful babies who probably talked right on schedule and didn't freak out in restaurants.

My eyes continued around the room which was so very different from the sterile-feeling, spartan exam rooms where I had sat with my children so many times. It was homey and comfortable. Mounds of papers covered every inch of desk space and on one wall, a shelf was full of thick, important-looking medical books, more family photos, and various knickknacks, probably gifts from patients over the years. I found myself wondering what things he had discussed here with other worried parents today. Did my silly thoughts about my 8-year-old’s social skills seem trivial in comparison?

One look at the sincere concern in his eyes told me they didn’t. 

I fiddled anxiously with my keys and my cell phone, unsure of where to start exactly.
He leaned back in his chair, pen in hand and encouraged me to start from the beginning. So, in the span of about a half hour, I covered almost eight years of worries as he listened intently and took notes.  He asked lots of questions. I cried as I struggled to answer some of them.

“What part makes you tearful?” he asked. I suddenly felt like he was more therapist than pediatrician. “Are you worried about what the tests might show us about Ben?” he continued.

“No. It’s not that.”

I took a deep breath. “I really don’t care what label they put on him. It’s not going to change who he is. And we LOVE the way he learns. He’s so curious and smart and so fun. Every one of his phases is an adventure for all of us because we learn along with him. I just... “

The tears started again.  “I want him to have friends. I want people to understand him and right now, there aren’t many other kids that do.”

The doctor shared his thoughts about everything I had told him and then scribbled down a name and number to call to set up testing for my son. A huge weight instantly lifted. I was actually relieved that he didn’t say it was NOTHING.

FINALLY. 

FINALLY someone had actually heard me.

There isn't an end to this story yet. The testing isn’t until next month and I don’t even really know what to expect as far as what we are dealing with because there are actually lots of possibilities, including, of course, the “A” word.

All I know is, because of genetics, it’s pretty safe to say that whatever is going on with Ben is probably at least part of what is going on with his little brother.  Basically, this means my oldest and youngest sons may very well a lot have more in common than just their poker straight blonde hair and impish grins.

I may not know the outcome, but I do know it will be a happy one no matter what. They are still my babies. They may use their brains in a different way than other children, but it doesn’t change the fact that they are smart and sweet and adorable to a fault.  

And, the world better look out. 

Why?

Because as far as I know, every person who has ever changed this world for the better is someone who was able to see it a little differently than most.