The Puzzle

puzzle

“It’s like fitting together the pieces of a puzzle,” the psychologist tells me and I swear, his eyes light up. Not that I can blame him for his excitement. My son, “A,” is an extraordinarily interesting subject and I’m not just saying that because I’m obviously biased. I’m saying it, because he really is.

“A” was brilliant from an early age. At two years old he asked me out of the blue as we were browsing in a book store, “Did you know that 2 + 3 = 5?” Not long after that I found him sitting on the floor of his bedroom crying. When I asked what was wrong, he wailed, “I can’t read!” His solution? He memorized the books that I read to him, so he could “read” them himself. At four years old he came home from camp one afternoon and announced, “The square root of forty-nine is seven.” And then proceeded to rattle off several other square root problems. Apparently his counselors thought it was fun to teach him square roots, because he already knew basic math in and out. “I feel like I’m talking to a twenty-seven year old,” one counselor told me. “I have to remind myself that he’s four.”

He could recite every single state in the union and the day it earned its statehood by the time he was six. Every state. My sister had given him a book, “Fifty States of America” and he memorized it. When we visited Plymouth Rock, “A” overheard a couple say that the first state was Connecticut. He corrected them, piping up in his little voice, “Actually it was Delaware. It entered the union on December 7, 1787. Connecticut was January 9, 1788.” (And yes, I had to Google that, because I couldn’t remember the dates. He’s way smarter than I am.)

The presidents were no different. “A” memorized every president, thanks to a set of flash cards I bought him, and could tell you the date of his birth and death, as well as the order of presidency. Forwards and backwards. He can start with Washington and go forward or Obama and go back. Either way, he never misses one. We were at a party and someone was wondering when Gerald Ford died. “A” had the answer ready. I Googled it on my phone and he was right, of course.

So, now you know – “A” really is an extraordinary child. But – and there’s always a but, isn’t there – he has a hard time functioning in school. He aces every single test. He’s hasn’t gotten a word wrong on a spelling test since first grade – he’s in fourth now. He doesn’t study and brings home high nineties. But, he doesn’t pay attention either. He daydreams, because he knows everything and he’s bored. Or at least that’s his take on it. When I asked him why he doesn’t pay attention, he answered, “I’m bored out of my mind.”

The psychologist found that he has “an extremely high fund of knowledge,” which he explained probably means that he already knows a lot of what’s being taught. He also said that “A” informed him that he daydreams when he’s bored, but he “doesn’t do it as much anymore.” One time “A” told me that he really is listening to his teacher; he just doesn’t always look at her.

“A’s” teacher, a lovely woman who is rightfully concerned about him, filled out all the little circles on a behavioral scale that I had passed along to her as part of the psycho-educational evaluation “A” was undergoing. According to her answers, “A” has a 91% likelihood of having Attention Deficit Disorder (ADD) or Attention Deficit Hyperactivity Disorder (ADHD). According to my answers on the parent scale, “A” has very little likelihood of having ADD or ADHD, but may have an anxiety disorder of some sort. I see him work with incredible focus when a subject interests him. When I picked him up one day from his after school science program, the teacher called him a “genius.” I asked her if he had trouble paying attention. She immediately answered, “No.”

At science camp pick-up when he was seven years old the program leader told me that he worked on his robot the entire session, even when the kids around him (much older kids) were getting wild, jumping around and throwing things. He just sat at the table and meticulously put together his robotic arm. At home he can easily entertain himself, reading books, drawing detailed, correctly scaled maps of the United States and using train tracks to construct a replica of area highways. He has built volcanos and Frankenstein hands. He read a book I bought him on experiments cover to cover and eagerly carried out many of them. I just don’t see the attention issues that his teacher does. And yes, I know that neither ADD nor ADHD preclude paying attention to enjoyable things, but this is different.

So, when the psychologist’s first suggestion was a trial of stimulant medication to test if he has ADD or ADHD (if it helps him pay attention in school, he has it – if it does nothing, he doesn’t), my immediate reaction was to politely decline. “Did you find any evidence of an attention disorder in your evaluation?” I asked.

“Well, no – not really. But, it might be the fact that it’s quiet. There are no other distractions.” I told him about the after school classes and camp – both places with all different age kids and plenty of distractions and he agreed that being able to pay attention in a situation like that is telling.

“Look,” I said. “I don’t want to be rude, but I don’t want to medicate my child just because he’s bored. He’s doing fine academically. I really hesitate to fix something that’s not broken. If he was suffering academically, that would be a different story. I’d be perfectly willing to try medication. But, he’s not.”

His teacher reported that he “moves slowly throughout the day and needs many reminders to stay on task.” I just don’t think that medicating him for that is a good idea – as difficult and frustrating as I’m sure that is. I move slowly and would forget every single thing I had to do if it wasn’t for my iPhone calendar. Perhaps it’s hereditary.

“Will it fix his social issues?” I asked. The one area “A’s” teacher and I rated “A” similarly was the social skills scale. We both reported problems there. And of course, that’s the most heartbreaking finding and the one that can’t be fixed by all the meds in the world. Even though “A” has two good friends and seems perfectly fine with that, he has at times been bullied (thankfully the situation was remedied) and has had social difficulties. Enough that he’s in the social skills group at school. And that little nugget of information is what brought the psychologist to perhaps finding that one piece of the puzzle that’s been missing for most of “A’s” life – or at least since early toddlerhood.

After I mentioned that “A” has an encyclopedic knowledge of many topics, the psychologist asked, “Does he learn everything there is to learn about a subject and then move on to the next thing?”

When I answered, “Yes, but he retains the knowledge,” he inquired, “You know what that’s a sign of?”

“Asperger’s?” I asked, knowing the answer.

“Yes, it’s a very common sign of it – an intense interest in a subject and the desire to learn everything about it.  Then again, it could just be his scientist’s mind – but, there are enough other signs that it should be investigated further.”

I wasn’t really surprised – not at all in fact. But, I still felt the heat creep up my cheeks and my stomach knot up. I know that it’s entirely possible to live a normal, rewarding life with Asperger’s, even an extraordinary life. It’s been contemplated that Bill Gates may have Asperger’s; Albert Einstein and Abraham Lincoln too. Surely many people with Asperger’s (which as of recently is no longer an official diagnosis – it’s now considered an “Autism Spectrum Disorder” or ASD) accomplish amazing things. It’s just hard to think about my brilliant, kind boy possibly facing a lifetime of social challenges.

The first time I brought “A” to be evaluated for Asperger’s was almost a year ago. His gym teacher informed me that she had first-hand experience with someone close to her who has Asperger’s and she saw a lot of those traits in “A.” I really appreciated her input, because she saw him in a more social setting than academic teachers. Plus, I had my suspicions already. But, within a few minutes of speaking with “A,” the psychologist ruled out Asperger’s. “He makes eye contact. He has a conversation. There’s no way this child has Asperger’s.” This new psychologist said that plenty of kids with Asperger’s make eye contact. There are varying degrees. But, at the time I breathed a sigh of relief and packed that theory away. I still didn’t have answers for why things are harder for “A” than other kids, though.

“A” has always had sensory issues – at his kindergarten graduation he alternately covered his ears and covered his eyes. It was heartbreaking to watch. At his fourth grade concert, he spent most of the time trying to push up the sleeves of his button down shirt, because he was warm. When he was a baby, he hated if his feet touched sand or even grass. He’d scream bloody murder if I tried to put footed pajamas on him. Lotion on dry skin was an impossibility. Occupational therapy helped, but didn’t cure everything – like his food aversions. No fruits, except for applesauce. No vegetables, except for corn (which he informed me is really a grain). Frosting on a cupcake? No way. Mashed potatoes? Not even a fork-full.

“A” wouldn’t give anyone hugs except close family and if someone he wasn’t very familiar with picked him up, he screamed. At the toddler gym he attended the owner – a large, muscled man – picked “A” up and after that ”A” cried every single time we went to his class, he was so traumatized. We ended up dropping out. “A” even mastered the “foot five” a few years ago, a trick my friend taught him, because he didn’t want to give high fives.

When I think about all of this, I realize that a diagnosis of Asperger’s wouldn’t be the end of the world, because maybe it would let us get him the help he needs and perhaps help his teachers to understand him better. He’s the proverbial square peg that they are trying to fit into a round hole. It’s just not going to work and medicating him to smooth down his edges so he’ll fit in seems to me the worst possible idea.

I guess only time – and some more testing – will tell. So far, all we know is that his IQ is in the superior range (and in some areas the very superior range). On one part of the IQ test he did much worse than the others, which may indicate a visual tracking problem – which could certainly affect his ability to keep up and pay attention in school. But, in another area that generally suffers in ADD and ADHD he scored in the 99% percentile. So, clearly there’s something else going on. And, I will get to the bottom of it.

Whether he’s just a quirky future scientist (he wants to be a meteorologist) or on the autism spectrum really doesn’t matter – all that matters is that somehow we (“A’s” educators and my husband and I) come up with a plan that will maintain his thirst for knowledge while helping him fit in better in the classroom setting. Because if his curious spirit is beaten down by an educational system that wants him to learn like everyone else before he gets to accomplish great things, it will be a loss for everyone.

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6 thoughts on “The Puzzle

  1. Kathy Barstow says:

    Stephanie –

    Thank you for sharing this. and for what my opinion is worth, keep on sticking to your guns and making sensible choices and decisions for your beautiful son. After all, you know him better than anyone and have his best interests at heart. He is lucky that you are his mother.

    Kathy

    Sent from my iPhone

    >

  2. Teena p says:

    Your son sounds like a beautiful, smart boy and I’m sure with a mom like you and your husband as well who take such an interest in him and his learning he will be fine. He is very lucky to have you. You will make a big difference in his life.

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