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.

Read (or red) any good books lately?

     C has always struggled with generalizing. His earliest feeding therapist said he needs to learn an apple is an apple wherever he goes – at our house, at school, at the park, at Grandma’s. It was a time when it was a challenge to get him to eat anything anywhere other than at home. I realized later the lesson translates to many other areas in his life as well, and we have seen evidence of that many times over.    

     I sometimes have moments where I think I can facilitate some great breakthrough with C in terms of connecting things in his brain for him. I think if I just say it correctly, in a way he understands, he’ll generalize the message and things will click. It usually involves an issue he can’t seem to get around or grasp, and I have this grand idea I’ll help give him an “A-HA” moment. The latest is sort of a hyped up “why” question, and I hope I’ll help him get some clarity about how he knows what he knows.

     So here I am, thinking I have a great lesson, something that will bring his subconscious knowledge to the forefront, combine with his conscious knowledge, and all potential academic issues will disappear. Yes, it’s true, this is the way we parents think sometimes. It’s not really conscious thought, but you learn to recognize that’s where your idle mind has gone. Before long I have him curing cancer and bringing peace to the world, which of course I am quite sure he could do. But I digress.

     Back to first grade. We’re working on spelling words, one of which is “read.” I ask C how he knows whether it’s r-e-a-d in a sentence or r-e-d if he only hears the sentence. I say, “There’s a pretty red flower.” Which word is it, and how does he know which word it is? He knows the answer, but he has no idea why he knows the answer. Or perhaps he simply can’t verbalize it. Regardless, we go round and round for many minutes with him answering that the “ea” is a short “ea,” that “red” is shorter so he knows it is “red,” etc. Next I say, “I read a really good book yesterday.” Similar responses. I finally give up and just explain how I know which word it was only by hearing the sentence and its content. He says “Ohhhh,” and I know I have failed to make the connection for him.

    Likely this will always be an issue for him. And I will likely continue to try to help him through it. While he may someday realize that an apple is the same wherever he goes, he may always struggle with generalization in some shape or form. I guess I need to take a lesson from what I’m trying to teach him and generalize more.

LDS

     On this eve of the Last Day of School, I must give a shout out to some school folk. First, to C’s teacher this year, a woman I have started calling “The Divine Ms. M.” I’m not sure if she’s old enough to know the reference, but it suits her. When she was discussing a sentence with the class and asked them to tell her the action word in the sentence, she was only slightly surprised when C raised his hand and told her not only was there an action word, but there was an adverb in there as well. She covered well, and believed C when he told her adverbs are words that usually end in “ly,” even though she had to take a moment to remember back to her own school years. 

     And then there’s Mrs. H, who set up C’s favorite PE activity, the parachute, only to have the kids interrupting her to ask her all sorts of completely irrelevant questions. It prompted her to tell the kids they couldn’t ask her anything unless it was about the parachute. C bravely kept his hand up, she sighed and called on him, and he said, “There’s a Parachute in Colorado.” And he knows exactly how many miles Parachute is from Grand Junction, too.

     I can’t forget Mrs. R, who delights the kids with the lovely colors she wears, and even further thrills them by having her hair a shade of something between a red and a purple. She stands out in a crowd, and believe me when I say it’s because of who she is, not what she wears or what color her hair is. But C, as we were writing out Christmas cards this year, leaned over and whispered in my ear with glee, “She has purple hair, Mommy!!!!” It’s pretty much the coolest thing ever.

     And Mrs. S, a speech therapist who summed up C’s very self in a single paragraph of his IEP; Mrs. G, who manages to do physical therapy with the kids without them even realizing they are doing work; Mrs. M, who makes the kids love music as much as she does; the aides that wave at him every morning as we drive in….I could go on and on. C is in a place where it seems everyone knows his name; all the aides, the custodian, the other teachers. What more could a parent ask?

     Mrs. M, the beloved principal, is a woman who somehow manages to instill control seemingly effortlessly while engendering great love from the kids. After Science Night, complete with a live alligator, a snake as thick as a tree trunk that all the kids were allowed to touch, and robot cars, I asked C what his favorite part of the evening was. “Seeing Mrs. M,” he said. That about says it all.

     And to all those other wonderful people, at his current school and the many behind us, to all those people who have helped us get him this far, I can only say bless you and thank you. It really does take a village to raise a child, and we have an awesome village.

A Few Moments in Time

     Wake up. Wait for C to wake up before showering because he will scream that he needs a bottom wipe (still working on that….) while right in the middle of shampooing and will have to dash across the house, dripping soap bubbles all along the tile…dog will lick those up but will probably throw them up later, and usually on the carpet which is harder to clean up than the soap bubbles on the tile. Listen to C get up (via baby monitor), turn off his white noise machine and get pull-ups off, undies on. Remind self to do some research on how to night potty train but also remind self there are bigger battles to fight at the moment. Listen to him go into his bathroom and run to his room to attempt to figure out how, when he pees, it gets all over the floor, the back bottom of the toilet, and the wall. Miss out on that one. Must remain one of the great mysteries of the universe.

     Take shower, interrupted by C standing outside shower door, talking, but not talking loud enough so I can hear, and after repeated attempts at understanding what he’s saying, watch him follow dog out into the hall and wonder what he’s going to do to said dog, and hope husband is paying enough attention to save dog should necessity arise.

     Plod into kitchen, ask husband if he gave C reflux medicine (99 times out of 100 the answer is yes, but must ask in case today is that ONE day), start fixing breakfast. Listen to repeated requests for “dip” (favorite breakfast of dipping something, usually gluten free pretzels, into natural peanut butter and organic whole fruit jelly without any apples because C is allergic to apples), and decide to make his day start great and give dip. Listen to newly acquired request to “spread” peanut butter out on the plate “like Daddy does,” and wonder if this is the start of some new sensory based problem rearing its ugly head.

     Start making lunch, which includes tearing up gluten free deli meat chicken (must be chicken because C is allergic to turkey) into perfectly sized small pieces, knowing if it’s not perfect, I will hear about it the whole way home from school and will be reminded of the one day I didn’t do it perfectly for the remainder of the school year. Put assorted other odd finger foods he will eat at school  (which is a shorter list than the foods he will eat at home) into lunch and wonder, if anyone at school wonders why I send the same thing for his lunch every day, and resolve to increase attempts to work on feeding issues in the hopes he will learn an “apple is the same thing at home, school, grandma’s house, the park,” BUT OOPS, he can’t have apples, work on another analogy.

     Finish packing lunch and set out clothes and revel in the fact that after years of work, C is finally able to unbutton own pajamas and can mostly dress himself as long as things are laid out in right direction and he doesn’t have to button, tie, zip, or snap anything. Make mental note to ask school team to work with him on those things in the hopes that someday, between the team at home and the team at school, he will be able to wear something besides elastic-waisted pants. Wonder when elastic pants become sans-a-belt pants and do kids make fun???

     Get water bottle filled and be glad it only took two weeks to figure out the bubbles that come home at the end of the day are NOT in fact from some leftover soap contaminating his water bottle, but rather because he messes with the straw in the bottle, blows water back INTO bottle, making, in effect, spit bubbles. Listen to C remind me again that there’s soap in his bottle (BLAST self for ever suggesting that within his ear shot!), and remind HIM again that the bubbles are from his spitting back into it and please don’t do that.

     Pack up backpack – have him pack himself reminding him of the backpacking rules that come so naturally to most people. Wonder if I ever had to LEARN how to pack a backpack or did I just figure it out inherently??? Teach him (again) to put homework folder in first, followed by lunchbox, sweatshirt and water bottle on the side. 

    Run out door and get into car. Buckle into 5-point carseat and wonder when  C will get enough muscle tone combined with weight where it’s safe to put him in booster seat. Wonder when more kids than just the one boy - who says something EVERY time he’s in our car – will notice that C is still in a “baby” seat. Sing stupid songs, pretend to race, do whatever it takes to get to school happily and distract from inherent distress at going anywhere Mommy is not. Join in lively rendition of favorite song, “She’s a Brick House,” (complete with “womp-bomp-a-loo-wow” sound effects) and renew concerns about the implications of a 7 year old knowing that song. Start singing “She’s a Maniac” (coupled with pretend fast driving) and doctor up the words to talk about Mommy driving like a maniac and wonder when THAT will come back to haunt me and in what way. Ask what special he has today and if he thinks they’ll have rocket math and keep up constant chatter entire way to school while looking in the rear-view mirror watching for tears or signs of distress.

     Get to school, park (because we don’t do the “push-out” lane), and walk onto playground, generally timing it right before bell rings so there won’t be too much time to run around and generate reflux issues before school even starts. Watch C run around for 2 minutes and not connect with anyone and fight urge to snatch him up and run back to car and keep him at home, sheltering him from sure pain of growing up. Watch him keep one anal ear out for horn so he can not only get in line, but cover ears because horn is too loud and resolve to ask if they could substitute something that doesn’t cause all the spectrum kids to go into sensory orbit before they’re even in the building. Know he is so worried about when the horn will blow that even if he had more time, he wouldn’t venture more than 10 feet away from his class gathering spot and feel sad that he’s so worried at an early age. Wish I could worry for him, and realize, oh wait, I already do that, but wish he didn’t do that.

     Wait for bell to ring, receive more kisses and hugs, be thankful that some days he walks off to get in line without even a backward look at me. Be happy that days of crying and begging to go home are mostly over. Wait for class to line up and go inside, standing, waving goodbye, before walking out with handful of other parents who still walk their kids inside the playground. Wonder, as we walk past the teacher/aide who is waiting for us to leave so she can lock the gate, if she thinks we’re nuts or just diligent parents.

Go home, work, clean, write.

Worry that phone will ring and it will be school.

 

Trouble with a capital T

     The first time C ever got in trouble at school was during his last year of preschool. When I went to pick him up, his teacher – a delightful woman with an enchanting voice every preschool teacher should have – was aquiver with excitement. “We’ve been waiting for this!!” she exclaimed. “It’s so typical!” For the uninitiated, “typical” is the word that has replaced “normal” in the world of development and special education. “Typical” is something they strive for, at least in certain areas.

     For Miss P, it was a moment that surpassed nearly all others in C’s achievements during his years with her. For him to get into trouble meant he was comfortable enough to let go, he was relaxed enough in his environment to just be a kid. I have no recollection of what he did to land in hot water, but I do remember how excited we all were.

     Now, when C tells me he was “counted on,” I admit to experiencing a secret thrill. They use the “1-2-3 Magic” method at his current school, and he rarely gets past a 1. In my mind, when he reports being counted, it means he was just being a kid, a regular kid at that, and was probably participating in mischief with another child. All good things for C, in my book.

Cure-all

     As my boy wandered around on the playground this morning, somewhat idly, he had a grin on his face. Anyone looking at him would think he was happy. But I, as a somewhat skilled interpreter of his language, saw a different picture. He watched the boys and some girls playing basketball, probably knowing the game was too fast for him. He said “hi” to a couple of kids in his class, but didn’t connect with anyone in particular. He was grinning in that slightly uncomfortable way one grins when they don’t know what else to do with themselves. He went up and down the slide a few times, enjoying it, but I’m sure knowing it would’ve been far more fun if he could share the experience with someone else. And I just wanted to cry. I still want to cry. I do cry.

     I know some people think I worry too much about this child who appears so happy and well-adjusted. Most of our days at home pass with relative calm; we’ve become so used to the way our family functions that we don’t notice how “different” we are. C doesn’t struggle in an obvious way at school, and to all who see him, he seems like he’s doing really well. He is in fact doing really well, and he likes his school. 

     Yet there’s more to the picture; there were tears last night. Big, fat, alligator tears about a hole in his sock that were probably about more than the hole in his sock. There’s crying every Sunday night about not wanting the weekend to be over, which probably has as much to do with Daddy going back to work as it does with C going back to school. There’s constant distress over why a certain friend, his “best” friend, doesn’t ever invite him over when we’ve had that friend over numerous times. He so desperately wants to have friends, lots of friends. He does have a number of surface friendships, but nothing outside of school would happen if I didn’t initiate it. No one is running home begging to do something with C. He is painfully aware of this fact, and doesn’t understand why.

     I so worry about this sweet, sensitive child who seems to mask his worries and stress. I want his path to be easier, and not because I want to shelter him from learning tough lessons, but because I worry he will be so terribly damaged on his journey. I see tiny, subtle little clues that he is struggling far more than any of us realize, and I wonder what that means for him down the road. 

     I realized this morning, as I did my morning errands and chores after dropping him at school, that I want things to be different for him. I want a cure. But not for him. For the rest of the world.

It’s all about your principals

     C attended two different kindergartens, because the first one we tried was so terrible. There was a little girl in his class who had Wilson’s Syndrome, which is an autism-like genetic illness that has at its base a high copper content in the body. I went in for lunch a number of times and sat with the kindergartners outside. Several of the kids were making fun of this little girl behind her back and saying very sophisticated and horrible things about her. Frankly, I wasn’t exactly sure what I was supposed to do or say given it was a Montessori school whose main tenet seemed to be that adults weren’t supposed to get involved in much of anything.

     I later brought up the incident with the principal, while attempting to explain to him my concern about C’s future and his complete lack of friends in his class. Mr. M’s response was that this little girl often hit other kids and that explained why the kids didn’t like her and therefore made fun of her. It seemed completely okay with him that she was the brunt of vicious comments. This wasn’t my first clue that Mr. M was not the kind of person I held much respect for, but it was one of the most telling. It broke my heart that his answer to the problem was to blame the little girl instead of working with her aide to make sure the incidents lessened as well as perhaps helping the other children understand why she often lashed out.

     The most damning moment for Mr. M, however, was the day after a particularly unpleasant IEP meeting. My emotions were raw as were my eyes from crying, and as I tried to get out of the school after dropping C off with a minimum of interaction with anyone, Mr. M called me into his office. As he was yelling at me, with door open, teachers, parents and students wandering in and out, he made a comment I will never forget. “I don’t care if C has any friends,” he screamed. “That is not my problem!”

     This, from an elementary school principal. I understand it’s not in a principal’s job description to help children have friends, but that comment brought on a light bulb moment for me. We pulled C from that school right in the middle of the year and never looked back.