What’s it going to take?

     I was hit with a ton of bricks today, and it didn’t feel good. All the time spent making sure C was in the “right” school, all the effort spent researching to find the best, safest place; it was all for naught. Each place turns out basically the same, and I finally realized today that the common denominator is C. We can search for a nice school with nice kids. We can pay a zillion dollars in private school tuition to make sure he is taken care of and well-supervised. We can even find a Christian school where you expect everyone to be kind.

     Check, check, and check.

     Still, the result is the same, and ouch, does it hurt. It doesn’t matter how nice the kids are, how much money we pay, or how Christian the school is. C likes the kids - every single one of them. He considers them all friends, even ones who aren’t outwardly very nice to him. Yet it all comes down to one simple fact:  The kids just don’t like C. 

     This became painfully obvious today - I’m still crying, hours later - when I went in for lunch. I’ve been avoiding hanging out at school, and now I realize I just didn’t want to admit to myself that all of our effort meant nothing in the reality of the problem. C and I sat at the “special” table reserved for kids who have visitors. Last time I went in, C asked each and every boy in his class if they wanted to sit with him at the special table. I listened as each and every boy said no. This is a privilege, mind you, and every other time I see a parent in there, there are several other kids at the special table with the special kid and his or her parent. Yet they all said no. Today C didn’t even bother asking.

     While we sat there, C dropped something and asked a boy at the class table to pick it up since it was near him. The boy kicked it as far under the table as he could and C had to get down on the floor and under the table to get it. The boy laughed and pointed at him, and then the other boys joined in. It wasn’t overt and obvious or even particularly loud, and thankfully C didn’t even notice. Then C walked over to the class table to ask another boy a question. This was a boy whose house C went to this weekend – Mom arranged, of course. Clearly the boy was uncomfortable talking to C, and when C came back, he mentioned that as he left the boy’s house on Sunday, he whispered in C’s ear, “Don’t tell anyone at school that you came over this weekend.” C only mentioned this because he had just been talking to him. He often drops bomshells like this days later, not realizing they are bombshells at all. C clearly did not connect the comment to anything having to do with himself. “Maybe the other kids think his house isn’t nice? But that’s not true, because it is,” he said, clearly perplexed. When he told me, I fought back tears. Just get through lunch, I told myself, you can cry in the car.

     It was all summed up for me. How much longer can parents arrange playdates? When is C going to really figure out that these boys don’t like him? And given he probably has figured it out on some level, how must it feel to go to school five days a week with a bunch of kids who don’t want to be around you? While I sat and watched every boy in C’s class (except his one real friend, who was not there today) snicker and giggle and whisper about him after both of these minor incidents, I realized I’d been hiding from the truth.    

     I’d like to go to school and talk to these boys, because of all the schools C has been in, this is the one where I thought he stood the best chance of finding his place – these are good kids in a good school. I’m not sure what I’d say to them, really, because I wouldn’t want to make it worse. I can’t make them like him. But one thing I’d like to tell them is that while they may not like him, C sure likes each and every one of them. A whole lot.    

     This is when I remember what the developmental pediatrician who diagnosed C told us: “If you can get him emotionally intact through middle school,” she said, “he’ll find his niche and he’ll be fine.” And I wonder to myself, just how can we do that? Where is the place that will have kids who will both protect and nurture him? Where, where will he fit in? What to do with a child who is so social, so desirous of being around other kids, but who is clearly not liked by those same kids? Public school, charter school, private school, Christian school – it’s all the same, and none of it is right. 

      I don’t know what the answer is, and that is why I’m really crying this afternoon. I don’t really understand exactly why the kids don’t like C. I don’t really know where the place is that would be safe and good for him, or if it even exists. All I know is that I fear C’s wonderful little world will come crashing down someday when he puts all of the painful pieces of this puzzle together. And then it will be more than he can possibly bear.

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Happy sad

    C started at his new school late last week. Between three days off for a snowstorm, a half day for teacher workday tomorrow, and a holiday on Monday, it feels like he’s hardly begun. There are many differences in his new school: the kids all seem genuinely kind, they pray in class (“I prayed that God could take a day off work and come down and visit us in school,” he told me), and lunch is a calm, relatively quiet experience. Still, he’s asked me to come every day and sit with him at lunch. Eating in a new place is like eating each food as a completely new food, so he always struggles when starting a new school.

   I went to lunch again today knowing it will likely be a few more weeks before he’s ready to cut the cord. C anxiously sat down to eat his rice and beans out of a thermos (also new). He didn’t want to eat, and I had to push him a little bit to get him started. After a few minutes, I got up and went to speak with his teacher in order to give him some independence. I came back and sat down, at which point C reached across the table, patted me on the shoulder, and said quietly, “Mom, you can go now.”

     I so often cry when C does things, and I often cry in both happiness and sadness at the same time. It’s a strange thing, really; it perplexes me a great deal to feel such opposite emotions simultaneously. I walked out of the school, my eyes filling with tears at the great leap in his comfort level as well as at the fact that he needs less from me every day. This, I suppose, is what all parents feel as their kids grow up – I doubt many other parents feel both joy and sadness when their kid finally pushes them out the door of school in 4th grade, but it’s all relative. It’s happy-sad, but ultimately more happy than sad.

Perspective is everything

     It’s been several years now, but I still vividly remember the last interaction I had with C’s principal at his Montessori Kindergarten. “It doesn’t matter where you go,” he said to me. “He won’t qualify for an IEP anywhere. He’s too smart.”

     That conversation took place the last day C attended his school, a mere three months into the year. I still fantasize about sending this principal the very full IEP C has had since then, coupled with his report cards (all of which show him at or above grade level in every subject). Being smart – or being on grade level – doesn’t automatically disqualify a child from having an IEP. How is it that I, the parent, knew it, but every single professional at that school didn’t? 

     As recently as last spring, I began to think about the day C would no longer need an IEP. Could he finally graduate from special education? I know he’ll always be his quirky self, but is it possible he will some day no longer need services? Then C started at his new school, in his small classroom, with his very observant teacher and a special education teacher who really gets it. And for the first time in years, we had an IEP meeting that was hard for me to sit through.

     It wasn’t all about how great C is doing. This school wants to increase C’s services, and increase them dramatically. While there were the usual wonderful comments about how bright and delightful C is, it was paired with comments that cut to the bone.

     “C is being unfair at recess. He’s cheating at tag, and the kids don’t like it.”

     “C got S in trouble when he told the teacher S had hit him when he hadn’t.”

     “We can’t let him get away with things anymore just because he’s cute.”    

     Ouch, ouch, and more ouch. It was a sleepless night for me. I was frustrated and angry, despite knowing what they said was absolutely true. I knew I was being completely defensive - I knew it, because none of this was a surprise to me. C does cheat because he hates to lose. He doesn’t seem to notice how much it irritates other kids when he does that. And S has said mean things to him since day one at his new school, and he’s a little obsessed with S now. Saying he’d been hit was probably C’s way of lashing out at S. And darn it all if C’s dimples can disarm me to the point of distraction when I am trying to redirect, give consequences, or otherwise discipline bad behavior. Let’s face it, the kid is beyond cute by any standards, and it has probably gotten him out of various situations over the years.

     But what was beneath it all was what disturbed me the most. Yes, C is doing well, he’s delightful, and he’s made astounding progress. That is always clear. What I realized, however, is that his particular struggles haven’t really disappeared as much as I thought they had. C’s challenges are simply more noticeable now because he’s in a smaller class. It’s probably not that C has been so steadily improving that his old school wanted to cut his services - it’s more likely that they just didn’t notice how much he needed them.

So far, so good.

     The new school, that is. We like. It seems we have found a place, and a teacher, who fit C. He’s had great teachers all along, and they’ve all adored him (and he them), but this one goes above and beyond special. I don’t know what it is, exactly – but she seems to have found a way to encourage C’s quirkiness while at the same time pushing his boundaries. From appreciating his “stream of facts” book report to offering him the chance to count the money at the school economics fair, this teacher has got him pegged.

     The class size alone (18 as opposed to 33 in his old school) makes much of what is in C’s IEP almost unnecessary, as his teacher is more able to address some of the issues he faces in the classroom. Her gentle approach to reading and her willingness to forge him ahead in math make him feel both relaxed and challenged at the same time.

      At least that’s what I think he feels. Perhaps I’m projecting, but the seeming absolute lack of stress about school are my clues.

     No more stomachaches, no more clinging to my leg in the morning, no more fear about walking into the building. There are still challenges: C still isn’t really bonding with anyone and has managed to find one kid who seems to go out of his way to bother him. After all, autism still lives here. But C is safe, he is nurtured, and he is appreciated, and with those things, much is possible.

Lessons learned

      I never knew looking for a new school for C would be such an adventure. We saw it all. Having realized that the giant public school model is no longer a fit for C, off we went to explore some pretty interesting places about as far from the neighborhood school as one could get.

     First it was the excellent charter school in a yuck part of town in an even more yuck facility. We almost left before we walked in the door. But the class C would have been in had ten kids from 4th-6th grade, and is taught by a teacher with a special education background. Very cool for the 4th grader who has some awesome math skills. The place would have been a no-brainer if it weren’t for, well, just about everything else. No specials to speak of, and the playground was beyond dismal.

     Lesson learned: first impressions sometimes are everything.

     Then came the interesting private Christian school that I have wanted to visit for two years. With less than twenty kids in the whole school, I figured C would get all kinds of individual attention. But looking at it online and visiting are two different things: it is run by a large-hearted, barefooted, grubby guy who looks and speaks like he did a few too many hits of acid in the 60s. The old house-made-church-made-school was piled with I’m not sure what, and the layer of filth worthy of a few bottles of clorox did not please my allergy-sensitive nose. It was an interesting place with interesting kids, but it wasn’t the place for my interesting kid.

     Lesson learned: apparently there is such a thing as bohemian Christianity - two words I never expected to see that close together.

     We then visited the more traditional Christian private school, with properly coiffed little ones behaving perfectly and scoring well on their achievement tests. Everything was fine until I dared mention “Asperger’s,” which sent the principal into a tizzy of, “Well, we’ll have to test him thoroughly with our resource teacher to see if he can handle the rigor before we could even consider admitting a child like him…” back-pedaling. I’m pretty sure he equates special education with stupidity, and I was non-plussed, given that C could probably out-math any kid in that school. No amount of my bringing up C’s AIMS scores, grades, or abilities got the principal back onto the “We have a wonderful school here” track. And when the principal himself pointed out how small C is right in front of him, well, that was the end of that.

     Lesson learned: good Christians do not necessarily good people make.

     Finally, there came the school we almost skipped visiting because it’s further away than we’d like. But the principal answered the questions I wanted to ask - in the way that I wanted him to answer them – before I asked them. “We have the classroom teachers go out with the kids at recess because they know our kids far better than an aide would, and they’ll know right away if there are problems,” he said just before I asked about recess. “Ms. J is a nurturing, kind teacher who has a very gentle spirit with the kids,” he said about the 4th grade teacher right before I was planning to ask about her. 

     It was a done deal before we walked out the door: this was the school. We still visited four more schools after this one, but none measured up. I find myself wondering why we didn’t switch years ago, and when I read the Principal’s welcome letter to parents, it only served to reinforce our decision. At C’s new school, “children don’t have to fit the system…[teachers] appreciate individual strengths and reinforce them with frequent praise…[children are] given the opportunities to express ideas in different ways.”

     Lesson learned: Find the place that encourages C to be the kid he is, without trying to make him be like all the other kids.

     Done.

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.

The ties that bind

     C has gone through developmental stages at various times, none of which seemed to quite match the evil developmental charts posted in the pediatrician’s office. Separation anxiety reared it’s ugly head at the start of 1st grade. In preschool, it was, “See ya’ Mom!” Or at least that’s what I imagined him saying if he could talk. At the time I thought perhaps he had skipped that developmental step altogether, and I patted myself on the back while I walked out of the building, teary eyed from my own separation anxiety.

     When the anxiety hit in first grade, it hit hard. I remember one particularly dark day when a teacher had to pry C off me, screaming and thrashing as the other kids looked on. C of course was fine five minutes later, although I spent the remainder of my day in that same teary eyed state. I’m sure the teacher was used to it, but I felt bad for her too.

     The anxiety has mellowed, although there’s always a few weeks at the beginning of the year where the tears flow in the car on the way to school, and I find myself using every trick in my book to distract C and stave off a complete meltdown. Now, however, one month in, he goes to school with a somewhat steely resignation that I know is replaced by happiness the minute he gets in the door.

     C still, however, wants me to walk him onto the playground and stay until his class lines up and goes inside. Thankfully, there’s at least one other parent in the third grade whose child is the same way, and we commiserate on the way to the parking lot about whether or not we’ll be walking our kids to their college classes in the future. We hope not.

     I’m sure teachers everywhere would like us to just drop our kids off and get the heck out of the picture. Things would probably be a lot simpler for them, which is always a good thing. If I had a typical kid, I might do that, but I figure there’s a time and place for coddling C a little bit, and if my being there in the morning lessens his anxiety, then I’ll do it. Frankly, I’m in no rush for it, but I’m hoping the developmental stage of C’s wanting me to drop him off at least a block from school – so as not to be embarrassed by my geeky Mom demeanor – will happen at some point. Hopefully that will happen before college.

A word on IEPs

     It is that dastardly time of year that so many of us dread. No, not Halloween, but IEP time. The “Individualized Education Plan,” code for “special education action plan,” is enough to bring trembling to any parent’s steady hands. It has all kinds of categories, goals, percentages, test scores, etc. It’s a picture on paper of what your child supposedly is. And people spend hours and hours writing them. I know our special education teacher did; she is enthusiastic and capable, and really wants to do a good job. I love that about her.

     But it’s not important. It doesn’t matter what is written in the IEP. Well, it does when there is a problem. When something is not happening, you need to have the IEP so you can say, “Look, here is what’s supposed to be happening and it is NOT.” It is important when you find yourself in a disaster situation with a school that does not get or does not know how to deal with your child. But even then I do not find an IEP all that helpful. We have been in that disaster situation (I keep calling it the “Great Montessori Experiment,” although “great” means “NOT great, but really, really terrible”), and the IEP did nothing for us. It does not matter what is written in that document if the people on the team are not capable of carrying out those goals. Ultimately we questioned if, IEP or no IEP, we really wanted those people being responsible for our child. The answer was no, which is how we ended up here, at our new school home.

     So here we are, in our second year in this new school, and we had our yearly IEP meeting this morning. A group of people, including the principal, sitting around talking about C for an hour. It is a great thing, really; ideas flying around, suggestions made, handwriting studied. And somehow, I walked out of there and found myself the newest Cub Scout Den Leader, but I’m still not sure exactly how that happened. These are highly skilled people.

     What I have found, over the years, is that it is about the people around the table, not the document on the table. It is about a group of people who are not only excited about my child, but take ownership of what he does in school. It is about caring how he does, wanting to do right by him, and cutting or adding services based on what he needs, not on what the budget needs. Perhaps I am seeing things through rose-colored glasses, but I always walk into the room at this new school feeling like these people are on C’s side. Not my side, not their side, but C’s side. And that’s where we all should be.

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.

Heartbreak

     As any parent with a special needs child will tell you, there are moments of extreme heartbreak. The moment when the specialist renders a diagnosis, or when you realize your child will struggle with something his whole life that other kids get in ten minutes, or when a school lets your child down. Yet often these moments come when you least expect them, and they are so swift and painful they take your breath away. Sometimes you don’t fully process them until later and you find yourself crying in the middle of the grocery store, reaching for your sunglasses and hoping you don’t see anyone you know.

     When I watched C wander around the playground this morning before school, aimlessly looking for a familiar face, something started to well up inside me. The time was only a brief five or ten minutes, but it felt like a lifetime. It’s not for lack of wanting to connect with someone; this child is about as social as they come. So I watched, while he walked around, anxiously looking for a friend to share his time. All the playground noise of the zillion kids running around faded from my ears as my chest swelled with a sob. There’s something so awful about watching your own child, whom you love so dearly and so completely, struggle with something so basic, so fundamental to his very existence.

     The moment became far bigger than it was, simply because it represents C’s challenges in the most profound way. He no longer approaches anyone and everyone with abandon, so he’s learned a lesson or two along the way. This is good and bad for the same reason: he’s more aware. Aware of some of the rules, yet aware he still doesn’t know exactly how the rules work. It’s a core issue of C’s version of autism.  

     The moment continued for me, while I later went about my day, sneaking up on me at inopportune times. Tears continued to drop here and there as I remembered his forlorn look as he milled about. Surely parents of “typical” children experience this at times, but I comforted myself by remembering that with the heartbreak comes moments (and there are more of these, truthfully) of extraordinary joy. Perhaps parents of special needs children experience the heartbreak and joy in more extreme ways, simply because there is nothing we can take for granted.