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.

Breaking up is hard to do

     When I was in college, I pledged a sorority. I didn’t really want to, but my parents encouraged me with stories of how much their lives were enriched by Greek clubs while they were in college. The short version is that the hazing, something I have never really fully put behind me, changed my college experience entirely. The final straw for me, however, was talking to a pledge sister about the hazing, hoping we could change the experience for the next year’s pledges. “I can’t wait until next year,” she said, “when I can pass all of that hazing on and do it to the next group to come through.” That was it for me; I quit.

     The difference between C’s experience and mine is that my experience was voluntary on my part. C has had no such choice in how kids treat him. Yet recently, I discovered how quickly the tides can turn. C has “infiltrated,” for lack of a better word, a group of two boys and become the third in that group. I have watched this friendship develop with a certain amount of trepidation because of the tightness of the original two combined with an autism diagnosis for one of the boys. I suspect it was just as hard for “Andrew” to make friends as it has been for C, and I was concerned that in this situation, three might be more than a crowd.

     When C came home from school today saying that Andrew told C and ”Billy” that he wanted to “break up” with them, I was immediately on alert. C talked about how he, Billy, and Andrew were playing a game, and Billy started to tease Andrew a little bit. C apparently joined in the teasing against Andrew, and from his description of the event to me, I’d say it was with a certain amount of joy.

     Whether C relished the new-found feeling of being tight enough with someone that the two of them could be against a third, or if he’s just so happy to have a friend that he will follow whatever comes along I’m not sure. What amazes me, however, is how quickly this can happen. In a span of days, C went from being the odd one out to the one excluding another. I was nothing short of stunned, having never seen this type of behavior from C before.

     I suppose it feels so unusual for C to be on the giving instead of the receiving end that consideration of another’s feelings just flew out the window. It’s all harmless playground drama for most kids, but it’s exactly the kind of thing that has hurt C so much in the past. The irony of the fact that Andrew also has a special needs diagnosis is not lost on me. I’m hopeful C will quickly realize that being on either end of the teasing specturm is sad and make nice with Andrew once again. And in a world where three is almost always a crowd, two boys with autism and a third – who is also not your average joe kid – might make for more than one friendship group can survive.

The Developmental Roller Coaster

     Years ago I stopped consulting the developmental charts. For a long time, it worried us terribly that C didn’t catch up. Given his prematurity, we operated under the premise that he would catch up by age two. Two, and then three, came and went with no catch up in sight. Eventually, I’d see the little poster in the doctor’s office with the milestones and when they should be met, and I’d chuckle and know we needed a completely new developmental chart for C. It would probably look something like this:

Walking:  Oh, sometime around 20 months. But there should be no toddling around. Don’t wait for that first, tentative step followed by lots of bumps and bruises as the skill is perfected. One day, he’ll just stand up and walk, and that will be that.

Talking:  Well, in theory that should happen shortly after walking. The all-knowing developmental therapist feels sure that C can only “work” on one thing at a time, and right now that’s walking. Surely he’ll do it right after he learns to walk. Or perhaps a couple of years later.

Nodding head “yes” and shaking head “no:”  Don’t know about that one. C’s still trying to figure out how to do that. The developmental charts put that skill at around 19 months. Apparently it’s in fact sometime around 8 years old.

Reading: Oh, that’s easy. He will learn that all by himself before age 3. It won’t be obvious, because he doesn’t really talk, but before long it will become clear he can read every word he can say, and then some.

Running:  It won’t be pretty, and actually will be fairly entertaining to watch from behind, but he’ll be able to do that fairly soon after learning to walk. It may never be a normal gait, but it will get him where he needs to go.

Sequence counting:  He’ll amaze people in lines by counting by 12s and 13s long before he should be able to. He’ll also be able to say the alphabet backward faster than should be normal.

Walking down stairs properly instead of using a “step-together-step-together pattern:”  I dunno, maybe never?

     So thanks anyway, What to Expect  books and posters at the doctor’s office, but I think I’ll stick with the “C Developmental Milestone Chart.” On that chart, everything C does happens Right. On. Time.

Telling it like it is

To Whom It May Concern:

     It appears that my son C has had his share of developmental evaluations over the years. From one therapist to another we have made the rounds, completed by Preschool Language Scales, CELFs, EVTs, Language Acquisition Challenge Test, SPELT scores, Expressive One-Word Picture Vocabulary Test, DIAL-3 Language screening, Peabody Picture Vocabulary Test, Peabody Developmental Motor Skills, Bayley Scales of Infant Development, Bruininks-Oseretsky Test of Motor Proficiency, Sensory Profile, Beery Test, B.O. Motor Test, and the Vineland Scales. These objectively scored tests don’t really tell me much about my child, so what follows is my evaluation after nearly 8 years of intense study.  

     C has more enthusiasm than just about anyone I know. His teacher’s husband (otherwise known as “Mystery Man”) brings popsicles into class every week or two, and C can hardly contain his excitement. On the Scale of Enthusiasm Development, C is a 10 out of 10.

     C has the best dimples. Inherited from Daddy, C got lucky and has them on both cheeks. For the Cuteness Rating, C’s scores are in the highly developed range.

     C spreads his joy wherever we go. Whether he’s charming little old ladies at the grocery store or chatting up the bank teller, his Flirt Factor is well above average.

     C does not have a mean spirited thought in his head. I watch other kids fake whispering to each other to exclude him, and am happy he would never even think to do that. On the Kindness Growth Test, C’s scores are perfect.

     C is funny. He says and does funny things all the time. He often doesn’t realize he’s being funny until we start laughing, and then he heartily joins in, of course repeating (a zillion times) whatever behavior or comment brought on the reaction in the first place. On the Humor Placement Chart, C gets an A.

     C’s fixations and obsessions tend to pass just about the time we’re about to go crazy hearing about them. Some, like trains, seem to be permanent, but fortunately the plumbing interest (as in, investigating the pipes in any and all bathrooms in our path) passed relatively quickly. On the Doesn’t Drive Mommy TOO Nuts Scale, C places fairly well.

     C can do some amazing things. He can count by 13s for just about forever, and he can read nearly anything you put in front of him. C can nearly whoop me at Scrabble, and I’m pretty good. And don’t even try to play concentration with him. On the Pretty Cool Tricks to Bring Out at a Cocktail Party, C ranks near the top of the charts.

     In conclusion, C is a delightful child. Please put this evaluation in front of all the others you have, as it is by far the most important and telling about C.

     Sincerely,

     C’s Mommy and biggest fan.

Thanks to Mama Mara  for inadvertently suggesting this post!

Let’s get physical

     I am reviewing ”THE BOOK.” Parents of special needs kids know what I’m talking about. We all have some version of it. C’s is a huge binder that includes his medical history, therapy (occupational, physical, speech, and feeding) evals, specialists’ reports, lab results, and the like. I take the book to every doctor’s appointment and all our IEP meetings.

     The book doesn’t get much traffic anymore, I’m happy to say, but mostly because we’re fairly comfortable with the status quo at the moment. We’ve done the bloodwork with the geneticist, the poop studies with the DAN doctor, and all the allergy testing we can find. We’re comfortable with the supplements he’s taking, and curing his allergies would require a move to the polar ice cap. He’s doing well, his health is holding steady, and he’s happy. We’ll leave things as they are for now.

     Mostly these days I get the book off the shelf simply to add a progress report or an updated therapist evaluation. It’s like reading a somewhat disturbing report card about your kid that has nothing to do with who he really is or even how he’s really doing. C is one of those kids that presents in real life far differently than he appears on paper, and most people who read his history before actually meeting him are completely surprised by the child they actually meet.

     So when I look back at an old physical therapy evaluation from when he was just shy of four years old, I am taken aback when I read the scores. “Percentile rank, less than 1%,” “age equivalent in months, 1 month,” and “rating, very poor.” This is what my child was? This is what my child is?  How is he even walking around with a report like that just a few short years ago? C has learned to swing this year, and he’s proud of that, but he still comes home crying that he can’t run as fast as the other, bigger boys in his class. C thinks his shoes are the problem, and I’m looking at it from the other side being truly happy he runs less and less like Forrest Gump with each passing day.

All by myself

     C’s teacher has daily brief writing assignments when the kids first arrive. The writings are my favorite thing they do in class, because they bring out the truth so well, and I feel as though I’m getting a special peek inside C’s head. I keep more of those than anything else that comes home. This is one of my favorites:

Living alone would be…boring because I like my parents. I would be so sad. I also wouldn’t be happy.

A little Thanksgiving miracle

     I write a lot about C’s eating challenges, and it’s partly because it is one of the biggest struggles we face, but it’s also the most unusual to people who know nothing about it. It’s the kind of thing you never think about unless it’s a problem. And if it’s a problem, then it’s usually an overwhelming problem. People don’t understand why we can’t take C to a restaurant, and I usually let them think it’s his dietary restrictions that keep us away. But that we could work around. It’s the more incomprehensible issues that make restaurants problematic. For a child who can tell the difference between brands of peanut butter, won’t eat a raspberry if it’s unusually large, and eats mostly only single ingredient foods, restaurants are pretty much inaccessible. C will eat one particular brand of deli meat chicken, but putting it on bread for a sandwich makes it an entirely new food, one that requires much effort to add it to the list of things C will eat. And putting it together with avocado or tomatoes, some of his new “preferred” foods, is even more forbidden.

     You can therefore imagine my surprise when he requested a burrito for dinner tonight. Husband and I throw all kinds of things on tortillas, so it’s familiar to C, but his actually eating a burrito is something I didn’t expect for years to come. He won’t eat salsa (too many ingredients and a combination texture that is distasteful to him), and mixing beans and rice would certainly be taboo. Hesitantly, I asked him what he’d like on his burrito, expecting him to give me a single ingredient. “Guacamole (his word for avocado), tomatoes, rice, beans, salt and pepper.”  

     Hiding my surprise, I quickly whipped up a little burrito, with his supervision, and took it to the table. He remained standing, which is his latest comfort spot when faced with a new food. I always envision his body activating the fight or flight response and him sprinting off somewhere safe, but I promised him he would be okay, and down he sat. Teaching him how to hold a burrito is another exercise completely, so instead I held it with him and off he went. It fell apart on the plate, something I had to warn him about in advance (messed up food is generally unacceptable), but he kept at it anyway until the entire thing was gone.

     These are the things we celebrate around here. I doubt that C’s eating something new will ever be something we take for granted, although it is becoming slightly less dumbfounding when it happens as of late. Yet it is always cause for patting ourselves (and C) on the back. All those years of working patiently in feeding therapy might have paid off after all. He’s come a long way from barely being able to tolerate a new food even being on the table, to moving it closer to him, to it being on his plate, to touching it, to kissing it, to licking it, to finally taking that first bite. A process that has finally come down to this. A burrito. But not just a burrito; a cacophony of tastes, textures, colors, smells, and sights that has been thrown together and all mixed up. Just the way life is supposed to be.

Checkin’ out

     I seem to be going through a phase I think many of us parents go through at some point in our kids’ young lives. There’s a point early on, where you know there is a limited amount of time as their young brains develop and patterns are formed. You run from therapy appointment to therapy appointment, and sometimes your child’s whole life seems to be full of therapy appointments. My son, for one, has always loved and continues to enjoy therapies. He works better with adults than kids, and he loves nothing more than someone completely focused on HIM. At some point, however, I began to wonder if he has reached the point where therapies no longer do much for him. In part because he is who he is, and another part because the other kids are who they are.

     I listened to a little boy tell C this morning that he was annoying, and later realized C would probably never say that to another child. He might if the child was in his face, but I still don’t think he’d say it in that way – he would say it in his own defense instead of as an offensive move against the other kid. If he’s mean to someone, it seems to be out of ignorance or true misunderstanding. He doesn’t ever seem to be mean simply for the sake of being mean. I don’t take any credit for this as I know it has far more to do with his diagnosis than any great parenting on my part. I just don’t think he ever looks at someone and calculates how to hurt their feelings.

     So as I’m pondering the wisdom of signing the form that came home requesting his presence in a friendship group at school (which was discussed at his IEP meeting), I find myself wondering if it will do any good. He’s quirky, he’s sometimes awkward, and he can certainly irritate other kids, but I’m not sure more therapy or a social group is going to change any of that. C is who he is, and I think he’s the most delightful child in the world. I wonder if he’s been coached enough, scripted enough, prodded enough, and prompted enough to just let him be.

Little Lawyer

     C has incredible debate and discussion skills that fluctuate between charming and irritating. He has the ability to drone on, asking question after question, that renders the person to whom the questions are directed completely foggy. “Yes.” “No.” “I don’t know,” I’ll say, and realize after 30 minutes of questions that I’ve zoned off into la-la land and I’ve completely tuned him out. Too much of our interaction is simply meaningless drivel because he’s assaulting me with lists of questions and I’ve ended up in this place where I’m a zombie and it doesn’t really matter what I say as long as I say something. This is hard for me to admit, as it brings to mind a parenting style I don’t wish to emulate.

           Granted, he is a curious child, but I see through this barrage of questions, and see his need to constantly connect with the people around him. He’s simply trying to engage, in whatever way possible, with the person on his radar screen. His way of engagement is battering one with questions, often ones asked a zillion times before, but perhaps in a slightly different way. While this curiosity is a positive trait in a child with an autism spectrum disorder, I see it for more than simple curiosity – it’s perseverative. Yet I think to myself it will make him a dynamite litigator someday.

     This rapid-fire questioning is coupled with a truly frustrating habit, which includes his coming up with another idea for anything I ask him to do. “C, please pick up those building blocks and put them away,” I’ll say. His response? “But I have another idea, Mommy.” This is followed by some other suggestion about building with those blocks, Mommy putting away those blocks, or throwing those blocks out the window. “But I have another idea” has become my least favorite sentence in his vocabulary. It doesn’t matter if the task is something he wants to complete or not, boring or fun, interesting or mundane. He always has another suggestion. And looking on the bright side, I tell myself it’s good he’s asserting his independence. 

     We waited many years for C to talk. I wouldn’t take back his words for anything, and I know how lucky we are to hear his voice. Yet in the same nanosecond of thought about how lucky we are to hear his voice, I admit to the occasional fantasy of joining a silent convent simply for a little peace and quiet.