Semantics therapy

     I worked on a research paper with my favorite professor in college. Part of our hypothesis was that behavior doesn’t change language. After showing that no matter how integrated Spanish-speaking people became in American culture, their ties to their native language did not change, I became a believer in the idea that language changes behavior as opposed to the other way around. While I wouldn’t go as far as saying the book The Secret is truth and gospel, I do believe there is much power in the thoughts and words we chose to believe and use.

     That probably explains my attempts to constantly see the upside for everything going on in our lives. Husband getting downsized last spring? The initial freak-out was replaced by the thought that it was an opportunity for him to find the perfect job, since the other one was clearly not. C getting picked on at school? He will grow up to be a much more sensitive person. My own health going off the deep end? It’s an opportunity to really change the course of how I will feel in 20 years and take stock in both my physical and emotional well-being.

     However, to be totally honest, there are huge gaps of simple, utter frustration and stress. While I think we’ve certainly accepted what is with C and actually take quite a bit of joy in the things his diagnosis brings both him and us, it does take its toll. Some days, within 15 minutes of his being home from school I’m ready to jump out the proverbial window, despite living in a one-story house. I wonder if I have the patience or stamina to give this child what he needs, because I often think what he needs is so much bigger than what I can give him. And sometimes that frankly just sucks. Raising a child with a diagnosis is hard, and it’s a lot of work. It takes its toll on me as a parent, and no matter how much I love C just the way he is, I can’t stop the gray hair from coming, my heart from being weary, and my head from sometimes craving an escape to somewhere, anywhere, but here.

Survivor, my style

     When I was in high school, I felt constantly on the outs. If we had been in the game of Survivor, I surely would’ve been voted off the island. Truly, my whole life I’ve never really felt as though I fit in anywhere, which astounds my mother, the goddess of all things social. My different-ness then came not from a diagnosis like C’s, but rather from not being a party girl coupled with wanting to move on to bigger and better things from the what-was-then-but is-not-now cow-town in which I grew up.

     My different-ness now, however, is one in which I revel. I love being Mom to a special needs kid – I feel as though I’m part of a wonderful club of awesome (if slightly zombie-like) parents. Since I have been writing this blog (almost two years now), friends both new and old have come out of the woodwork sharing stories of their own children with challenges and gifts all their own.

     As I look through the faces of friends on Facebook, I think back to those high school days and know that none of us ever thought we would be those catatonic parents trying to help their very special kids gain a foothold in this complicated world. I don’t even remember there being very special kids in high school, although I’m sure they were around. Yet now they seem to be everywhere, touching friends’ lives in profound ways most people can’t even imagine.

     So instead of voting people off the island, I think I’d invite everyone to join me on it. Let’s create a special place where all of our amazing kids can grow and develop at their own pace, run free without aid, and where they always, always, fit in.

It’s always the Mother’s fault

     I’m pretty sure all the things I swore as a child that I would never say to my own children have come out of my mouth in the last four hours. From, “Because I said so,” to “Mommy and Daddy make the rules, not you,” I have broken all those childhood promises to myself in a very short amount of time. Geologically speaking, anyway, because the last four hours felt like an eon or twelve.

     Yet like all good dysfunctions, I’m pretty sure I can blame this one on my mother. The price we pay, and it is the absolutely only price we pay, for having C spend a night at Ga and Pa’s house, is a complete hellion when we get home – to the point where Husband laughingly asked me to call Ga this evening and ask why she took all of C’s good behavior.

     It never fails; we pick up C from “Grandma camp,” as we call it, and get the report that it was all sweetness and light. After all, it always is when C is with someone other than us, which leaves us no conclusion to which we can arrive except that we are exceptionally bad parents. Well, that’s the conclusion at which I arrive; Husband is far smarter than I. He knows, and fully believes, that a) C saves his worst behavior for the ones he loves the most; or b) that C works really hard to hold it together at school, for example, and then has to unload when he comes home, or c) C dumps on us because he subconsciously he knows he can and that we will still love him after it’s over.

     It’s not as if he gets away with anything at Ga and Pa’s house – far from it. The kicker is that he doesn’t really even try to get away with anything at their house. Or school, for that matter. The Dr. Phil in me says that we are doing something wrong at home that sends C the message that it is okay to test each and every boundary as many times as possible in a single hour. But I think I’ll go with Husband on this one and choose option ”a.”

I’m just one of those mothers

     I have a confession to make: I was ambivalent at best about becoming a mother. Husband and I never really planned to have children, nor did we plan not to have children. There was no conscious decision made in either direction. I was certainly excited when I found out I was pregnant, although more than anything else, I was absolutely terrified. Of what, exactly, I’m not sure.

     I was not one of those women who enjoyed being pregnant. I was surrounded by those women, and marveled at their eagerness in experiencing all things pregnancy. But they may as well have been from another planet for all I could relate to them. I’m just not cut of that cloth. Even more so, I wasn’t one of those women who wanted with all their being, knew from the moment they could think for themselves, that they wanted to be mothers. I almost felt guilty that I was going to become a mother while I watched dear friends, who so desperately wanted to become mothers, try everything possible to get pregnant but couldn’t.

     Yet for all my feelings of ambivalence, I became one of those mothers who simply cannot separate themselves from their child. I’ve struggled with it since day one. Not because I simply revel in all things parenting – I didn’t coo at every spit up or eagerly journal and videotape every single thing C has done. But when I look at C, and marvel at how he’s of me (and sometimes almost can’t comprehend how he could be), I am struck by how very un-separate from me he seems to be. Some would say it’s my heart living outside my body, but it only feels like that a little bit. When I really try to get my thoughts around it, I can’t exactly.

      It takes me back to the very beginning of my blog (see here), nearly two years ago now. While I do believe that God gives us what we need, I’m still on the watch for the greater meaning of why this child has me and I him. Perhaps it is as simple, and as complex, as C is what I need and I am what C needs, no further explanation necessary.

Yes, Virginia, there IS a Santa Claus

     I live for Christmas. I love all of it - the music, the decorations, the weather (I miss snow with every fiber of my being), and seeing family. I think I’m like the Whos down in Who-Ville who would enjoy celebrating Christmas even if there wasn’t a single gift to open. This year, after an admittedly tough spring and summer, I look forward to spending Christmas with those I love even more than usual.

     C is definitely infected with the same Christmas bug. He gleefully sings Christmas carols and plans out gifts he wants to give people (I came home the other night to the treat of three treasures from his room wrapped up for me). C absolutely understands that giving is as every bit as good as receiving, and he cheerfully donates toys he no longer uses and wonders who will get them.

     It was only a couple of years ago that C began to understand presents, stockings, and Santa Claus. He fully believes in Santa, which I suspect will come to an untimely and painful end when some other kid fills C in far before he’s ready to hear it. Yet I’m ready for that, armed with my talk about the spirit of Santa Claus and having faith in things you just can’t see. After all, at 40 years old, I’m still a believer myself.

    This year, there’s going to be something very special under the Christmas tree just for C, and most definitely from Santa. Imagine my surprise yesterday when Husband discovered an envelope on the front walkway with a simple handwritten note inside. “Dear Darcy and Husband,” it said, “it looks like I’m going to be pretty busy this year, so please use this card and make sure to get ‘you know who’ something special. With love, Santa Claus.” Enclosed? A Target gift card for $150. No joke, and absolutely NO idea who left it.     

     So Merry Christmas C, and much love and thanks to C’s unknown secret Santa. You’ve kept the spirit of Christmas alive, and someday, when C begins to question Santa’s very existence, I can’t wait to share with him this story.

Tank-full

My tank is full. I’m thankful. Full of thanks, for so many things.

At the beginning of the school year, I asked the powers that be for C to find one friend. Thank you.

My greatest wish for C has always been, and will continue to be, that he is both healthy and happy. Thank you.

C is blessed with many, many adults surrounding him who completely adore him. Thank you.

Between the two of us, Husband and I are sometimes able to be a step or two ahead of whatever C has in store. Thank you.

Every night before I go to sleep I ask the powers that be for the patience and strength to get through the next day. Thank you.

The people on C’s team at school are simply amazing. Thank you.

I have found strengths that I didn’t know I had. I used to think if I could get through the trauma surrounding C’s birth, I could probably do anything. Now I know I can. Thank you.

I have a child who is so enthusiastic, so happy, and so charming, that people just fall in love with him wherever he goes. Thank you.

I have an incredible support system: from Husband, who tells me all the time what a great Mommy I am; to parents who tell me the same; to a respite provider that loves C as much as I do; to a brother and SIL who happily chat on the phone with C for an hour so I can make dinner; to friends flung far and wide both in real life and here in the internet world. Thank you.

And thank you all for sharing this journey with me.

Hold my hand

     I have long felt the frustration of knowing I need to teach C how to make it in this world while at the same time wanting to preserve and protect his unique personality. I’d like to think those two things don’t have to be mutually exclusive, but sometimes, unfortunately, they just are. Caught between wanting to help him not stand out in what is considered a bad way and wishing kids would just mind their own business has left me frustrated and angry with the way of the world.

     A member of C’s team pulled me aside last week and said he’d been holding hands with his friend “T,” the boy I consider his first real friend. A truer Mutt and Jeff there never has been; T outweighs C by probably 50 pounds and is as tall as C is short. They are quite the pair, drawn together by their mutual love for Mario and T’s uncanny ability to just be C’s friend. 

     So why shouldn’t C hold T’s hand? Who cares, really? Apparently, the other kids do. I’m not sure if it was directed at the boys or if C just overheard someone talking, but he now knows what he calls “the ’G’ word.” He knows “gay” is considered bad despite not really knowing what it means.

     I’m in a conundrum here, for many reasons. The first of which is that both Husband and I are fully supportive of gay rights, gay marriage, adoption by gay couples, you name it. That being said, we know it is not yet developmentally appropriate for C to know about sex and its relationship to the “G word.” So explaining what “gay” really means is something I don’t feel he’s ready for just yet. Quite frankly, if we even mentioned that men sometimes marry men, I’m pretty sure he’d ask T to marry him across his crowded classroom, and then there would be an entirely worse set of problems.

     Which brings me to my second conundrum. I am so tired of feeling as though we need to change C’s behavior and actions to match what other kids deem appropriate. His holding T’s hand is as innocent as it is sweet. Telling him holding hands with another boy is inappropriate makes me want to rebel against all that is deemed “normal” and “typical.” Yet at the same time, if we don’t help him with this, it will be just one more thing that makes him stand out from the crowd.

     I want C to stand out from the crowd – he always will no matter what he does, both in marvelous ways and in ways others find unsettling. The last thing I want to do is turn C into a generic clone, although I realize this will never be the case. And while there are some things I refuse to try to change about C, this is probably a situation where I should just go with the crowd. However, I’m hoping that down the road, we can go back to C and tell him that in fact some boys DO hold other boys’ hands, and that it is perfectly okay. But in the meantime, we’ll just have to go with that rule.

     I don’t like this new rule; I think it goes against not only my personal beliefs about people being allowed to love whomever they love, but it also takes away some of C’s innocence all for the sake of not standing out for something other kids say is wrong. So while Husband was back in C’s room tonight telling him that in 3rd grade, boys just don’t hold other boys’ hands, I was left feeling as though we have somehow sold out just a little bit.

C-isms Part XVIII

“Mom, I bet you’ll like this catalog because you’re a fashion lady.”

“I’m homesick. What does that mean?”

“Mommy, this Galaga game has guys (spaceships) shooting other guys (other spaceships). Is that appropriate?”

“Mommy, you look divine. What does that mean?”

“We had a bus evacuation drill today. It was an A-. I wanted a slide out of the back of the bus instead of a jump down. But otherwise it was good.”

“It’s really easy to talk to birds. You just have to speak their language. Like, ‘Tweet, tweet, tweet, tweet.’”

Just say no

          C has a version of something called Dermatillomania (also known as compulsive skin picking or CSP). It’s an impulse control disorder like the more well known trichotillomania (hair pulling), and is a cousin of OCD. What it means for C, which is slightly different from the traditional presentation of the disorder (of course it is; C always does things in his own way), is that he picks scabs over and over and over and over and over. After a particularly mosquito-y summer visit to Tennessee, we found ourselves wrapping his legs in medical tape so that he couldn’t get to the band-aids, pull them off, and pick. The kid goes through more band-aids than I can count, and we should own stock in bandage companies.

     C has yet to create a wound from nothing, but he has opened up old scars. There’s a leftover tiny cut on the top of his head from an oops with the hair clippers, and he’s now going on one and a half years (yes, years) of re-opening this wound. It has changed the pattern of his hair growth and I fear it will get to the point where he will be the only eight year old in the world with a bald spot. C spent half of last year wearing a hat all day, every day – we had to get special permission for him to wear it to school – to help. We’ve tried everything; we’ve yelled, we’ve begged, we’ve bribed, we’ve taken things away, we’ve given him fidgets for his hands, and of course none of it works for the long term. I suppose we thought he would grow out of it, and that we were doing all we could to help him do so. I remind myself that it’s not as if C can control it, but it still infuriates me like nothing else he’s ever done. I know that’s where I’m failing him the most as I’m sure he’s even more upset about this than I am, and probably far more confused about it than I am. This requires sensitivity on my part, not frustration.

     Save therapy, which to this point has seemed an unlikely path for this particular child, there’s only one other thing we haven’t tried. The one thing a doc who saw him two years ago for five minutes wanted us to try. A prescription for Zoloft, Xanax, and whatever other mood-altering drug you can name. “It will clear this right up,” he said as he tried to shove me out the door with script in hand. “It will probably solve those feeding issues he has too.” This was no expert; it was a hometown family doc who seemed to want to solve everything with a bottle of pills. If he hadn’t thrown in that last completely ignorant blip about C’s feeding issues, I might have fallen for it, so desperate was I.

     I don’t mean to go all Tom Cruise on this issue, but I’m pretty much against meds for my kid. I believe there are cases where drugs are absolutely necessary, but I don’t yet believe this is one of those situations. The research doesn’t show an enormous amount of success treating this issue with drugs. Couple that with the fact that I think C is precariously perched on the top of a fence - on which one side lies health and the other a downward spiral of medical issues - and body chemistry altering meds are not an experiment I find worth the risk.

     But where I wasn’t ready before, I’m ready now. I’m waving the white flag; I realize I’m in over my head and I surrender. So now begins the search for a psychologist or a psychiatrist who is able to do cognitive behavioral therapy (apparently the type of therapy that sometimes works with this disorder) on a kid who isn’t particularly enlightened about his own triggers nor the emotions that go with them. A search for someone whose first instinct isn’t to write a script, and a search for someone who has dealt with this before. A search for someone who won’t be fooled by C’s seeming grasp of language and its components. A search for a knight in shining armor, an angel who needs her wings, a healer who will be able to read this kid in a way no one ever has before. I hope this person is out there, waiting for us.

I mark the years in tennis balls

     I remember the first developmental pediatrician we ever saw; she was the one who gave C three diagnoses to add to the zillion that came before: high functioning autism, hyperlexia, and developmental coordination disorder. “Get him into team sports,” she said. “He needs the socialization. Soccer, maybe.” This was after I said I was thinking about karate, which I’d always heard is good for kids with autism.

     We tried both soccer and karate, with varying degrees of success ranging from marginal to disastrous. Soccer was a special needs league. It was like a field of kittens with puppy buddies trying to help the kittens play on a team. It was all sweet and good, but it was useless for learning much of anything. In the team picture, which I look back at with a mix of bitter and sweet, not a single kid was looking at the camera. I took that as a true reflection of the delightful insanity that was that soccer season.

     Karate, however, was a nightmare. Movements and sequences that were way too hard were combined with 25 kids in a loud gym and an instructor so strict and uncommunicative that C had no idea why he ended up in time out halfway through the first session. We made it through exactly three classes before we forfeited the ridiculous amount of money we paid for that semester and never looked back.

     Team sports have now given way to individual ones, and tennis and golf seem to be of interest. Now, in our third fall in one place, C is taking tennis lessons for the third year. He has always had but one goal: to hit a ball over the fence. He couldn’t even come close the first year, and last year wasn’t much better. It wasn’t until tonight, in his second lesson of his third year, that he proudly and solidly sailed a ball right over the fence and into the likely rattlesnake and scorpion infested bushes. 

     I suppose that tennis ball is a metaphor for C’s amazing growth and progress in the last few years. If I were the type of Mom who revels in these things, I’d see all kinds of not so hidden parallels between all these years of effort and the ultimate achievement of such a lofty goal. I’d get teary eyed with the thought of how hard C had to work to get this far. Instead, I gladly ventured into those bushes to retrieve said tennis ball, all the while sneakily wiping non-tears from my eyes.