Tuesday, April 11, 2006

Baby Steps

So much of the time, he seems so normal.

Well, maybe normal isn't really quite the right word. I've never really liked that word, normal, as applied to something so complex as people. Who is really completely "normal" anyway? What exactly is supposed to be the norm?

Let's say then . . . average? No, not quite. Every kid is above average in some things and below average in others. Developmentally appropriate? Bleh. I don't know. Let's just say:

So much of the time, he seems like a regular, healthy kid.

Look at him there, with that tousled red hair, those big brown eyes, that coy, toothy smile. Those fine elven features. That creamy skin. He could be a child model-- and I'm not just saying that because I am his mother-- we hear it from strangers every day-- he could almost be a kid out of a magazine, if it weren't for that little white scar there right between his right eye and the bridge of his nose. (The scar where they took out the tumor growing slowly on the outside of his skull, a "minor" surgery. The scar marking the day when his eating behavior suddenly, drastically changed).

If it weren't for the fact that his arms, when you look at them closely, sticking out of his sleeves, seem terribly thin. Bone-thin.

If it weren't that under his shirt you can see in crisp detail right under the skin his entire ribcage.

See him at the restaurant having dinner out with his family? Sitting so calmly in the highchair. How well-behaved. Almost never screeching like the other kids. He just read a word off the menu! How old is he? He's really not yet two? His parents must be doing a great job! And now he's ordering what he wants from the waitress with a flirtatious grin, and every waitress in the restaurant is pausing on her rounds now to look at him and ooh and ahh over his sweet smile and the color of his hair. He seems like such a happy kid!

But then watch what happens when his food comes. The kitchen accidentally gave him ranch dressing with his nuggets instead of ketchup. He begins to moan softly and rock back and forth. Suddenly he screeches "Hot! Hot!" although his food is mildly warm. He shoves his plate across the table, refusing to look at it, shaking in actual fear. "Mommy have it!" he insists. Then he won't even touch the french fries, his favorite, even when his mother takes them off the plate and cuts them into little pieces. He won't eat a bite of the food he ordered so eagerly, even though he seems very hungry. He won't even touch the cookies his mother packed in the diaper bag, just in case. He goes the whole meal, whining in hunger, without touching a single piece of food.

"Why don't they just MAKE that kid eat something?" the other patrons whisper. "Such a little brat. I bet they let him get away with murder at home."

Look at him running around there in the grass! Tossing a ball to his mother. Smiling winningly and shouting out "I got it! Thank you, Mommy!" clear as a bell when she tosses it back. Already talking so well for his age. Such a regular, healthy kid. ABOVE-average.

Until the ball rolls across the paved path curving up toward their apartment, and you see how he starts to run after it, but stops short in front of the concrete, confused by the sudden change in texture beneath his feet, afraid for a moment to take the next step, though he's crossed that path while holding his mother's hand hundreds and hundreds of times. Afraid to move forward, convinced he will fall.

Until a plane flies too low over head, or a big truck drives past on the street, and he drops everything and snaps to attention, shivering, suddenly anxious, whispering, "Loud."

Until the neighbor kids come out to play too, and you see how he suddenly shies away from them, even though he knows them, even though he likes them, even though a few months ago he chased them happily around the yard. You see him cling to his mother's leg mumbling, "I'm sorry, I'm sorry." Because he's already started to realize he's different from them. That he loves to throw a ball, but hesitates to kick it like the other kids. That he's afraid to climb up the stairs at a playground, even when holding hands.

Then another kid's mom brings out a box of popsicles for everyone. Sweet, colorful, slimy popsicles, dripping bright sticky juice. Another child offers him one and he screeches and RUNS full tilt into his mother's arms.

"Inside, Mommy. Inside, please, now," he says.

Look at his mother, there. Young, thin, smartly dressed. Looking pretty put-together for a stay-at-home mom. "I hear that even though she chose to stay home she has a college degree from a great school, and her apartment is stacked to the ceiling with books," someone says. "She must be smart as a whip. No wonder her son is already counting to ten by himself, and reading." "I hear she cleans her house every day, and cooks with herbs she grows in her own garden, and sometimes even bakes bread for her family from scratch," another voice says. "She's a really dedicated housewife." "I hear she works from home part-time as a writer and a photographer, too," another person says. "She must really have it together."

Now look at her, crying in the bathroom at night, after she finally gets her son, who has been a terrible sleeper since birth, to go to sleep for the evening an hour past his bedtime. Listen to her saying over and over again to her husband, "What kind of a mother can't even get her son to eat or sleep like a normal human being?!?"

(What's normal?)

"Eating and sleeping. The two most basic components of survival. And I can't even get him to do those right. What kind of a mother raises a child who's afraid to play with other kids at the playground? What kind of a mother am I?"

The mother of a child with Sensory Integration Disorder, is what kind.

With occupational therapy, love, and time, we've both been getting better. Slowly. A few steps forward, a few back. And we'll keep working on getting better, getting closer to "normal." One teetering little step at a time.


Rebecca said...

I don't know how you feel because I don't have to deal with any of this, but I just wanted to offer support and lots of luck for the future.

The Adventures Of Dr. Gene and His Mate WonderMum said...

I DO know how it oldest son had this disorder, along with other learning and behavior disorders. Believe me're doing a wonderful job as a mother, this is just the way it goes when your child suffers from something like this. It's a hard way to go, but, if you keep working with he gets older you will find that it's worth it 100% and that later on he will thank you for it just as mine did.

Perstephone said...

I have no idea what you go through on a daily basis, but I just wanted to say that I think you're a great mom. Doesn't the word normal really mess with your head? It sucks. Keep up your strength. Your kid is so lucky to have you!

MrsFortune said...

I wish I could come give you and your son big hugs. Internet hugs will just have to do.

Andrea said...

Don't worry about what other people think. You're doing what's right for Isaac, what's right for your family, and you're making progress, even if it is baby steps at first. You love him wholeheartedly, and you're just the right kind of mom to help him through this to a better semblance of regular, everyday kid. Time and patience, and love, which you seem to have all three in abundance. You're a good mom, despite your doubts, those snickers in restaurants, those fears that it'll never be quite right. At the very least, Isaac will grow up knowing you love him, even if he is unsure about the world around him. He will never doubt you love him and want the best for him. You're a good mother, Jaelithe. Don't doubt that.