Archive for January, 2009
Rudolph the Red-Nosed Rein-dog, C’s robot project!
We have lah-ah-ah-ah-ahhhhhahah-ts of toys at our house. It’s partly the fault of both sets of grandparents being enamored with their only grandchild. It’s partly the only child thing and the desperate need for a little downtime for Mommy and Daddy every once in awhile. But I admit it, it’s mostly my fault.
Given that early on C never used toys the way they were meant to be used, I tried many things. Even once he started playing with toys a little more, he was rarely on track with the supposed developmental toys. Presidential flashcards at age 4? Yep. The phone book (I know, it’s not a toy, really)at age 6? Yessirree. But playing with the “right” toy at the “right” time in the “right” way? Nope, not so much. Toys were hit and miss. Some stayed in the closet for years past the age they should have, but he still loved them, so stay they did. Others he skipped by with nary a backward glance, and they have long since gone to Goodwill. Some still sit, waiting to be discovered, on his playroom shelves. He has toys for 2 year olds and toys for 10 year olds.
The most meaningful collection for him, however, is his GeoTrax trains. A fabulous toy I’ve written about many times before, and one that remains a constant in his life for many, many years now. A reward for trying a new food (see here), his collection of GeoTrax is massive. He can name each part, when he got it, and what food he ate to get it – and in order, no less. We’ve built monster tracks all over the house and everyone who tries it loves to play with it – adults included. C doesn’t play with it so much now as build it, which would be fine if he would ever willingly take it down…thank goodness for the little playroom tucked in the back of the house that company never seems to see.
I suspect long after he’s done playing with it, his GeoTrax will still be around, again mostly because of me. For me it’s a memory, a journal of his path along this difficult path of eating. Unlike him, I don’t remember the food he ate to get each piece, but I can look at the entire collection and know it is representative of his struggle, our struggle, with something so incredibly difficult.
I work as a program administrator for a small theatre company that does what I’ve come to call “therapeutic theatre.” The players, people I have come to admire greatly, perform improvisational theatre based on audience members’ stories (it’s called “playback theatre”), and they also do workshops in which the audience fully participates. The therapeutic part of their work is that they are doing all these workshops and performances at homeless shelters, juvenile detention facilities, and group homes for developmentally disabled adults. The participants, through improv, explore their feelings, learn empathy, and become empowered in their own lives. It’s amazing work that takes my breath away whenever I see it.
Today I spent my morning participating in one of the workshops with juvenile sex offenders. These aren’t 20 year old men who had sex with their 16 year old girlfriends. These are 14, 15, and 16 year old kids who did something bad enough to land them in a locked-down treatment facility. Scary stuff.
Truthfully, I didn’t want to go today. Sex offenders make me nervous. Young sex offenders, those who have probably perpetrated their crimes on even younger children, really make me nervous. So it was with heavy heart that I attended the workshop today. I suppose in the back of my head, even being the liberal bleeding heart that I am, I was expecting these kids to be monsters, horrible miscreants with big signs on their t-shirts saying, “Stay away from me, I’m scary,” in case there was any doubt. Which I didn’t figure there would be, given the horns I must have thought would be sticking out of their heads.
The truth, however, is that these kids are just that – kids. They’re babies, really, not even old enough to live on their own. And frankly, they seemed like pretty nice kids to me. On the verge of being out of control sometimes, which was apparent both in their words and their actions, but overall most of them seemed like good kids. No horns in sight.
What struck me the most as I made the long drive from the inner city back home to my sheltered life, is that somewhere out there, all these kids have a mother, some of whom are probably just like me. A mother who wants her child to grow up to be happy and healthy. A mother who has high hopes for her son. A mother who probably questions her every move with her child, and perhaps replays events in his life, wondering if she handled them the right way. A mother who probably never anticipated the challenges that parenting have brought her, but is doing her best to work through them.
A mother who just wants to hug and shelter her little boy.
I hate birthday parties. I’ve said this before, and I’ll say it again, I’m sure. I hate them when C doesn’t get invited, and I hate them when he does (a rarity; today was the first this school year). I dread them, know they are going to be terrible, and know that I’ll come home feeling sad, frustrated and angry. The birthday party has, for me, replaced the park in terms of my least favorite thing to do with C. It represents all his challenges rolled into one – large groups of boys running around mostly unfacilitated, unsupervised as long as they aren’t killing each other, and doing unstructured activities. You know, everyday life with a typical boy.
When C was about a year and a half old, and not walking yet, the differences in him were so apparent at the park, each time I took him the pain threatened to burst through. I’d often stand at the playground, tears leaking out, being thankful for sunglasses and that I didn’t know anyone there. Now birthday parties have taken over the bad spot, only it’s a bit worse because I actually do know people there. I expected the worst today, so I was moderately prepared, but it still feels like a ton of bricks crashing down. At least now I’m starting to grow a helmet and don’t expect much.
Yet I always come away with the same frustration. What is it about kids being mean? Why do we accept that being mean and hurtful is just part of growing up? Is it really a necessary developmental stage? I even think it myself, and find myself explaining away a kid’s bad behavior. “Kids are kids,” I hear myself saying, and I try to remember that most of them are good kids. I know even my kid has done things that seem unkind, but when I watch a child consistently exclude C throughout the party, taunting him and teasing him, and calling him “stupid,” I can’t forgive it or get past it. I just don’t get it.
While other kids have an ability to slough things off, I’m not sure C does. He’s not wandering around tonight, crying that someone said he was stupid. Yet I suspect that there’s a chink in his armor, even if he doesn’t recognize it for what it is, and how many of those can he take? How long before all the good things the people who love him say to him are broken down by the bad things he hears elsewhere? And what happens then?
Tonight while C was taking a shower, I decided to try to expand on the things he does for himself while bathing. He’s pretty good at washing his belly, but that’s about it. I told him to wash his arms, legs and bottom crack. “What crack, Mommy? What are you talking about?” I reached behind him and touched the top of his derriere to see if he could feel what I was trying to explain. Silly me, have I not learned anything? This is a kid whose body awareness ranks right up there with, well, I have no idea, but suffice it to say HE has no idea. He still misses ankles and elbows most of the time I ask him to find them, and calves are baby cows, don’tcha know?
So as I watched him trying to look at his bottom, eerily resembling a dog chasing its tail, I had to laugh. Round and round in circles he went in total confusion. “I don’t have a crack, Mommy! People like me don’t have them! Is it from a gun? WHAT ARE YOU TALKING ABOUT, MOMMY?!?!” Nothing I did could convince him. I showed him my own (yup, dropped trou right then and there – I have no modesty left since becoming a mother), and held him up to the mirror backwards to see if he could see it.
Nope, no crack. Nuh-uh. No way, no how.
It was a momentous day for C - a playdate at our house with a boy from his class. His first such playdate, at our house or anywhere, with any boy from his class. I’ve felt as though he’s given up on the boys completely; he doesn’t say hello to any of them in the mornings when he gets to school anymore. He told me recently that he’s started going to the end of the boys’ line instead of the usual alphabetical order because the boys say mean things to him or poke him, so he just keeps getting further and further to the back of the line so they won’t bother him anymore.
So never have I felt such desire for a playdate to go well as I did today, and it reminded me of a first date. Combine that with the C’s announcement, as he climbed into the car with A after school, that he had moved his desk to be near A’s because they’re “best buddies now,” and the pressure was on. I admit to a brief moment of concern over whether it will last and what will happen if it doesn’t. Fortunately, it all went well, and A’s Mom came just in the nick of time when I could tell C was done.
Most telling for me, however, and perhaps the most achingly sweet, was C’s pronouncement this evening at bedtime. “I wish every day could be January 12th,” he said, “because then A could be here all the time.”
I have always said I have a PhD. in the study of C, although I think it’s completely obsolete with each new day. When he was a baby, I would sit up late at night typing in keywords from neurology reports hoping to come across the magical answer to whatever seemed to be ailing him. Once we realized there was more going on than prematurity, I started reading. A lot. I had heard of every single genetic disorder, syndrome and issue, and I could rattle off the symptoms of many. None of them fit my C. Even the high functioning autism diagnosis we finally landed on doesn’t really fit C perfectly, but it fits better than anything else anyone has thrown on the table.
Yet even with all that knowledge, I still feel ill-prepared to shepherd this amazing little creature through life. As soon as I seem to master one challenge, another comes along, and I’m stumped. Be it behavior or gross motor problems or apparent attention deficits, I feel powerless to figure out how to get through it in the most successful way possible. I’m always one step behind him.
Some things I have down pat. But throw in a completely new issue, and I’m back to square one. I’m reading, questioning, discussing, asking advice and analyzing until my brain is full. And feeling frustrated that if and until I figure out how to deal with this problem number 4 zillion and 96, my child has to pay the price for my complete lack of experience. Where is the fairness in that?
I should probably ask myself when I will stop expecting to have all the answers. When will I realize that raising this child is like taking a new test in algebra or physics in a different language every single day? Yet somehow, not realizing I’m doing that every single day is probably the most self-preserving denial there is. I think my brain thinks that every new challenge might be the last one, so when one more come along it’s not nearly as overwhelming as expecting them to come along all the time.
In our yearly struggle for the appropriate educational placement for C (which is part of why he went to two preschools in two different states, two kindergartens in the same town followed by a move to another state for 1st, and now 2nd, grades), I often fight the impulse to just yank him right back out of line and take him back home in the mornings. Most of the time I want to avoid for him the meanness from some of the other kids, but sometimes it has everything to do with his education.
I have to say, we’ve been mostly pleased with his education so far. Yet I can’t help but wonder sometimes if we’re educating the very essence of C right out of him. As he struggles to carry and borrow in his math homework, I realize he’s taking far longer to do the same problem on paper that he used to be able to do in his head in mere seconds. I have no problem with him doing the math in his head – however it is that he does it – but will he be able to do it when it’s 10,322 minus 9,999 instead of 56 minus 48? Are we wrong to try and teach him the “right” way in the hopes of well-serving him down his educational road?
As I continue to evaluate how he’s doing on a yearly, monthly, and even daily basis, I hope I’ll recognize the signs if and when it becomes clear he needs something beyond what traditional public education offers. There’s no doubt he’s a square peg; what’s not clear to me yet is if all the holes in school are perfectly round or if there’s a few that might accommodate his somewhat different shape.