Let’s give him something to talk about

     I have had to force myself to limit the Pokemon conversation that is a constant in our lives these days. I let C tell me about two Pokemon, or talk for five minutes, or ask three questions. But when we’re done, he inevitably asks, “What should we talk about now, Mom?”

     I admit to being at a complete and utter loss at how to answer this question, and it leaves me pondering just what it is I discuss with other people all day and how those conversational topics are set. Having to “pick” a topic of conversation reminds me of an awkward first date, because you know if it’s that hard to find something to talk about, the relationship will never work. Since this question mostly comes up in the car after all other topics are exhausted, I generally say something about just enjoying the ride and looking out the window. This seems like a cop-out to me, but I’m baffled as to what to say. I’m so used to conversation just flowing that being forced to think about how it does so renders me mostly mute.

     I’ve tried the conversation starters, and they work for a moment or two. Once C even surprised Husband and me by suggesting we share one thing we liked about our day over dinner. God love this child – he is trying as hard as is humanly possible. It’s not that C is trying to hide anything or doesn’t want to talk, but when I ask him what he did in Spanish class today, the answer is brief and full of the basics. He doesn’t talk about the other kids unless something major has happened, and he often misses the daily dramas that occur within the classroom around him. I pull as much information out of him as I can, but once those conversations die out, C somehow works Pokemon (or Mario, or plumbing, or trains, or whatever is his current fascination) back into the discussion, and I tend to fantasize about escaping to Hawaii.

     I’ve realized that despite being extremely verbal and talkative, C has very little “functional language.” A speech therapist told us this once, and I admit to not completely understanding her message. “C has much to talk about, but much of it has nothing to do with people, emotions, social interaction, or function.” Frankly, I think we were so happy he was talking at all after years of silence (verbal anyway…the days of screeching “Pterodactyl Boy” aren’t erased from my memory), we perhaps missed the fact that his language was missing some key components.

     Yet now, when I talk with some of the neighborhood kids, I realize how effortless conversation actually is for typical kids, and I revel in those moments of crystal clear communication. I’m amazed not only at what they observe (“Dog isn’t as excited to see me this time as he was last time, Mrs. P,” says the three-year old neighbor boy, while I stand there, mouth gaping open at his awareness and ability to share that information with me). Then C will say something to another parent about knowing what Wi-Fi system they have and whether their parental controls are set on the Wii and both of us have to chuckle.

     Fortunately, C is extremely charming. Dimpled and smiling, he loves to talk. He’s friendly, engaging, and often quite funny. He does have friends – actually, if he knows your name, he considers you a friend – although close friends are few and far between. At this age, where kids are starting to have relationships based on more than one shared interest, C is left standing conspicuously - and often painfully - alone. I hang on to the fact that his so lovable; adults love him, and my hope is that when his current peers become adults, they will love him too.

It’s done

     After a mere two weeks and one day, we pulled C from his school. We had been contemplating it since he started at this school last year, but we were pleasantly surprised when he had a pretty good year in third grade. We knew things would change as he went along, and we expected that around sixth grade, his school situation would likely have to change. Sadly, we only made it to fourth.

     Even more sad is that we are pulling him mostly because of what goes on during a mere 35 minutes of his day. 35 minutes in which the public school system (yes the “system” -  I don’t for one minute think this problem is unique to C’s school) has completely and utterly failed this child.

     It all started with lunch. I walked in only to see him sitting all alone at a table for 20 while every other table was completely full. C’s sometimes utter aloneness in a sea of children is often too much for me to bear. Part of his IEP includes having an adult help facilitate conversations between C and other children during situations like these. He wasn’t alone because he wanted to be; he was alone because it didn’t occur to him to ask someone to join him. Then to hear C chastised by an adult for not inviting someone to sit with him, well, that was about the end of the rope for me. I figured if the people working with him don’t get it by now, perhaps they never will, and I’m not about to wait around to find out. 

     Then it got worse. Far worse. He went out for recess, and with 130 kids on the playground and two aides, what I didn’t expect to happen this soon almost did. I saw it all from afar as I sat in the parking lot watching, tears streaming down my face. I watched C crying and arguing because he got called “out” of a kickball game I don’t think he was even being included in to begin with. Before I knew it, he was surrounded by several very large kids who were yelling at him and threatening him. He was, in my opinion, within seconds of getting punched in the face by a kid so big I thought he was an adult. Thankfully the situation defused itself, but not before it all happened a second time.

     There was no adult within 100 yards of C, and certainly no one was watching him. I know this because I was watching them not watching him. Oh, I understand there are a lot of kids to watch out there, but he is one that they are supposed to be keeping a special eye on simply because he is so incredibly vulnerable, and his social skills – in an unfacilitated situation such as this one - are so undeveloped. 

     The near violence at recess was the push off the edge that convinced me his experience at this school was over. Upon later discussion with C, it became clear he didn’t even realize how dangerous the situation was – which shows me he’s even more vulnerable than I thought.

     So he’s set to start a new school on Tuesday, one where we don’t expect perfection, but one that seems to not only celebrate kids in all their forms, but also seems to teach the kids to celebrate other kids in all their forms. It is with heavy heart that we leave a teacher we loved and the traditional public school system – which we have believed in so strongly for so long. It makes me sad that the public school system in general seems to have such a difficult time helping the very children who perhaps need it the most.

To all the girls he’s loved before…

     C loves the ladies. And they love him back. From his early days of charming grandmotherly types at the post office and calling every woman he saw a “pretty lady,” it’s always been about the girls. There’s a few he’s left behind; most notably the “it” girl of elementary school, if there is such a thing. He adored her from afar, and from not so afar, as he asked her every day the first few months of school if he could sit with her at lunch. Given that she said “no, thank you” every single time (at least she was polite, I suppose), I’m hoping he finally realized that some things just aren’t worth it. Silly girl – she doesn’t know what she missed.

     Yet there’s one girl C has left behind that tugs at my heartstrings. A non-verbal, special needs girl who was in his class last year. C worshipped her. Every day he would rush to school so he could play with her in the sand while waiting for the morning bell to ring. Hours upon hours added up of their sitting in the sand together at recess and before school. She never spoke save a few words in sign language, but I believe her love of him was as deep as his for her. They hugged each other dearly every morning when they first arrived.

     This year, however, she’s not in C’s class, and one member of his team suggested that it was good for him as he needed to move on from her. “He needs to grow beyond her instead of ‘hiding’ with her,” the team member said, and I knew she was right. But I also know why C loved her so; she was safe. Aside from being completely sweet and lovable herself, she never turned him down when he wanted to play with her, never said an unkind word, and always welcomed him with open arms. Who wouldn’t love that?

     C cried when he found out she wouldn’t be in his class this year as his little heart broke into a thousand pieces. He got over it as he settled into his new class and started making friends. Yet every morning when we walk onto the playground before school, she turns his way, her little face lighting up in the tiniest of ways. And unless I point her out, C just doesn’t see her anymore. He has moved on, which makes me both happy and sad at the same time.

So far, so good

     Big transitions have never really seemed to be a problem for C. We’ve moved more times than I can count with his gleeful participation and joy in settling in somewhere new. He happily troops along on road trips and thinks sleeping in a hotel is an adventure, even if it is just a dumpy old place along the road between the old house and the new. If we switch his toothbrush on that trip, however, it’s a problem worthy of major meltdown proportions.

     This school year involved a big transition which everyone was nervous about. C’s move from the lower elementary school to the upper seemed like an insurmountable leap for which he wasn’t ready. Let’s face it, he’s about a foot shorter than everyone else and still watches Thomas movies, while his peers are talking about the latest Batman, Spiderman, or some other scary (to C) man out there fighting even scarier men. On the scale of emotional maturity and sophistication, C is most definitely at the bottom of the pack.

     It was with great trepidation we all approached this change, and for the first time ever, we saw tangible evidence of how challenging this transition was going to be. Before bed meltdowns that began the day school started, coupled with big, fat, alligator tears on the way to school each day told me C was as nervous as anyone. The biggest clue to his state of mind has been his complete lack of desire to arrive at school early enough to have playground time before the morning bell rings. That’s my barometer of his emotional state of mind.

     The flip side is C’s complete and utter joy in describing his day when I pick him up after school. He is filled with stories about games he played and who he sat next to at lunch. He’s keeping a running tab of which kids have which game systems, and his interest in potential playdates seems to be intimately tied to said list.

     So despite the reluctance in going each morning, which seems to be lessening as the days pass, I have to believe C is adjusting well. It’s been tough on him for sure, but I think this transition has been just that: a transition. In and of itself. All by itself. Nothing more.

     Now all we have to do is keep the same toothbrush the whole year.

And so it begins

     On this morning of the first day of school, I find myself more anxious than usual about the new year. After one year of difficulties with boys, I thought it might be a fluke. After two years, I know it’s a pattern. So what will 3rd grade bring, and is there any way C can attend an all girls school?

     The elusive path to friendship with a peer boy eludes C. I worry that all the boys in his class will be gargantuan-sized athletic boys who understand the subtle ways to tease someone else and get away with it. I have visions of C sitting alone at the lunch table, trying not to cry into his rice milk. Will yet another year pass with the only party invitation being from the boy whose Mother makes him invite the whole class?    

     We’ve done everything we can to pave the way to a successful year. We explored the idea of holding him back to be with a “nicer” group of boys, but decided against it. I met with C’s new principal multiple times to ensure his placement with the teacher who would be the best match for him. I took C in to meet with said best-match-teacher (heretoforeveraftermore dubbed “Mrs. D”) last week, and, as per usual, he is smitten (so am I). It helps that Mrs. D resembles “Peach,” C’s favorite Mario character, and has dog pictures scattered around her room. 

     There is hope. C’s desk is next to a girl from his class last year who was delightfully kind to him. I’ve volunteered to be class Mom in the hopes that I can arrange some playdates with other kids. The new special education teacher seems to be a definite bright spot.

     I don’t want much. Just. One. Friend. Surely that’s not too much to ask.

A light at the end of the tunnel

     In the midst of preparing for C’s upcoming IEP meeting, I’ve quite suddenly realized that the end may be in sight. Since his first IEPs, which were all about his challenges, to his later ones, which seem to be mostly about his strengths, I’ve hoped for C’s graduation from special education. When we first started down this IEP/IFSP road at 9 months, we anticipated C would enter kindergarten without his IEP tagging along. That was back in the day when we hadn’t really quite figured out he had a real diagnosis other than prematurity. Yet kindergarten came and went, with many struggles along the way to indicate the necessity of future special education interventions. 

     Now I’m having conversations with his team about ways we can keep his IEP for the next couple of years while we wait to see what happens in C’s progression. We’re talking as if it’s a given that he will be IEP-less by 5th or 6th grade. It’s the first time we’ve had a potentially realistic end to his involvement with special education. Frankly, I’m not sure how I feel about that. On one hand, it’s an indicator for how well C is doing. The child is astounding. It’s a time for kudos for all of us on C’s team, past and present, who have helped him become the amazing little dude he is.

     At the same time, I know hyperlexia generally includes some academic downfall at some point during the school years, and while we’re seeing bits and pieces of that in terms of reading comprehension, I’m not sure how big or how bad it will get. My sense is that he will struggle as schoolwork becomes more complicated and they move on to more subjective work. As evidenced by the writing section on his most recent standardized testing, where they were asked to write about why the early people didn’t know much about what was in the sky (which was the subject of the previous questions on the test), C summed it all up in just two, brief sentences at the very top of the entire blank page. “The early people didn’t know much. They didn’t have books then.”

     As is usual in C fashion, he hit the nail on the head. it’s hard to argue with his logic. Unfortunately, it was the right nail, wrong head – for standardized testing, at least. We’ve been down this road before with C’s grouping of an apple and a banana together not because they are fruit, but rather because “red and yellow make orange.” Now who can argue with that?

     So as we come to this “Y” in the road, I’m cautiously encouraged. And I’m hoping that someone out there in C’s future academic experience will look at him as a delicious challenge of interesting proportions – someone who can appreciate and capitalize on the inherent truth that red and yellow do in fact make orange.

The A-word

     I’ve always been an open book when it comes to C, and I generally share his diagnosis with just about anyone. C himself doesn’t know, although he’s seen the A-word on books I have sitting around the house, heard me say it to people, and probably actually does know it means something for him. Frankly, I’m surprised he hasn’t asked me what autism is, given his curiosity about every other word in the English language. Yet we haven’t started the discussion with him because we don’t feel he’s ready to hear how different he is when all he’s interested in at the moment is being the same as everyone else. 

     As C and his peers are all becoming more aware of all things, I now find myself closing up in order to protect him. A reporter is coming to see him at school in the morning to talk about a charity project C is working on, and I had to call the reporter back after our initial conversation to tell him to please not use the A-word in his article. Despite C’s autism being the subject of several newspaper articles a couple of years ago and C’s loving that his picture was on the front page, now his classmates can actually read and I’m quite sure they’ll read this article. The last thing I want them to do is have a name for him that is not his own.

Taking the C out of C

     In our yearly struggle for the appropriate educational placement for C (which is part of why he went to two preschools in two different states, two kindergartens in the same town followed by a move to another state for 1st, and now 2nd, grades), I often fight the impulse to just yank him right back out of line and take him back home in the mornings. Most of the time I want to avoid for him the meanness from some of the other kids, but sometimes it has everything to do with his education.

     I have to say, we’ve been mostly pleased with his education so far. Yet I can’t help but wonder sometimes if we’re educating the very essence of C right out of him. As he struggles to carry and borrow in his math homework, I realize he’s taking far longer to do the same problem on paper that he used to be able to do in his head in mere seconds. I have no problem with him doing the math in his head – however it is that he does it –  but will he be able to do it when it’s 10,322 minus 9,999 instead of 56 minus 48? Are we wrong to try and teach him the “right” way in the hopes of well-serving him down his educational road?

     As I continue to evaluate how he’s doing on a yearly, monthly, and even daily basis, I hope I’ll recognize the signs if and when it becomes clear he needs something beyond what traditional public education offers. There’s no doubt he’s a square peg; what’s not clear to me yet is if all the holes in school are perfectly round or if there’s a few that might accommodate his somewhat different shape.

It is what it is

     Occasionally, I have moments where I wonder if C has outgrown his diagnosis. Some days, he does so well, and I wonder if we saw the same doctor now that we did when he was 3, she’d still give him the same diagnosis. Yet there’s really no other diagnosis that fits; we’ve always said he has “C syndrome” because his medical issues combined with his developmental ones just don’t fit into a tidy little package with a word attached to it. 

     Usually, when I have those days of wondering where he fits on the diagnosis wheel of fortune, there is some cruel reminder of the reality of the situation. He is the only child not included in a game at the park, he can’t eat his ketchup because it’s a slightly different shade of red than the previous bottle, or he has a complete and terrible meltdown because I got him a new toothbrush. A slap in the face, really, is what it is for me. “Yup,” the universe says, “this child will struggle with some things his whole life. Deal with it.” And I do, and he does, and we all move on.

     Yet tonight I had one of those reminders that really made me smile. It wasn’t a “typical” day by any stretch; there was the distress this morning over the potential of being even a second late to school this morning, combined with the total heartbreak this afternoon due to his placing last of all the 2nd grade boys in a fitness challenge at school. We talked long and hard about how everyone is good at something different, and how he’s good at many things, and how he’s only competing with himself on the fitness challenge. I reminded him he was born early and born small, and that he still had some catching up to do, and that probably “N” would always be taller than he would, and how that’s okay.

     So I didn’t have far to fall today. I wasn’t getting all giddy about C “graduating” from special education or anything like that. Perhaps that’s why tonight’s reminder was such a gentle, actually sweet one. I walked into his room to change his sheets, and saw on the floor, lined up in perfect rows and perfect lines, all of his stuffed animals in complete and perfect alphabetical order.

A handsome sparkler

     C is hyperlexic, which translates to an early interest in letters, numbers and logos, followed by very early reading. He could read almost before he could talk. His first day of preschool, at just shy of 3 years old, he walked into the room, looked up at the EXIT sign, and said, “E, X, I, T, exit!” His teacher asked me if I’d heard of hyperlexia, which I never had. I’m pretty sure we thought all three year olds knew how to read and spell the word “exit.” I took him home, wrote all the words he could say (there weren’t many at that time) on his magic doodle board, and he read them. We were astounded, and quite frankly delighted. He also figured out, at about 4, how to calculate someone’s age in money (I’m a quarter, a dime, and 4 pennies). And I still remember him wandering around the playroom pointing out every Fisher Price toy we had. He fits the hyperlexia diagnosis probably better than any other diagnosis he has.

     Generally, hyperlexic kids even out with their peers and then tend to fall behind in later years, when comprehension becomes problematic. At the moment, C is excelling in all things academic. C can decode just about any word, but he doesn’t necessarily know what they mean. Even when he understands what they mean, he doesn’t always really  get the meaning in context. We’ve had a few people who think he’s gifted academically, but I’ve never been completely convinced that it’s not just the hyperlexia. Time will tell.

     In the meantime, schoolwork has become somewhat more challenging, which has presented areas of concern, such as his recent answer to the question, “When was a time when you were pleased with yourself?” The question was in response to reading a story about a girl who is proud she won a spelling bee. His answer, “I’m pleased that my Aunt J and Uncle T are coming soon,” made clear his fundamental misunderstanding of the context of the word in the story.

     Yet there are entertaining moments as well. Never has this been so clear as today’s schoolwork that came home, requesting the kids use specific words in a sentence of their own creation. C’s responses had us all howling with laughter and glee.

          HARDLY – I work and play hardly. 

          HANDSOME – I am handsome looking, because I look good.

          SPARKLING – I am sparkling because I am cute all over.

     For this moment at least, I put away any nagging concern in the back of my head about academics in his future. If he can retain this kind of charm and self-confidence, I’ll consider his schooling a complete success.