Taking Root, Taking Wing

Talk about a lesson in trusting yourself. In the five weeks since Nikolas took his last dose of seizure medication, we have witnessed the following:

He’s begun showing a voracious interest in food again after two years of not eating; he wants everything from our plates and wants to feed himself. He’s not actually biting and chewing yet but he is making tremendous progress with pureed and thickened foods. And he’s tolerating all kinds of new textures such as meat (!!), breads and bagels, tortilla chips, slightly chunky mashed potatoes, mashed broccoli, cookies…all kinds of things he never showed any interest in before.

He no longer wants to sit in his Kimba chair to get a full tube feeding by pump unless he is either in the kitchen while I am making dinner —and getting to share it with me while I cook —or sitting at the dinner table with us. Breakfast and lunch are now broken up into two rather large bolus feeds as Nik sits in his little Elmo easy chair. He even follows directions to pick up Elmo and “bring it over here” (usually near the sofa so I can sit and feed him) then makes a big production out of sitting down and patting his tummy to indicate he’s hungry. Yeah, he’s turning into a first rate ham.

He comes to the gate to tell me he is hungry by signing eat; if I ask him does he want apple or cracker (pretzels) he will indicate his preference by signing the right one, followed by please. He now signs please anytime he wants something. Then, I ask him to show me what he wants. In the last five weeks, Nik has learned the signs for book, ball, and watch. Well, technically, he’s learned the sign for time —as in Signing Time —but he likes to chew on my sport watch so I’ve taught him how to ask for it with nice words. I still have to prompt him some on that specific one but he’s really catching on fast.

He can also sign all done, open, shoes, and diaper now. And, very often, he will sign “ball, please” or “book please” completely unprompted when he wants a toy. This week, Nik actually stood in front of the armoire, patting his chest for please and said “gah, gah.” You’d better believe he got that book right away!

He’s begun putting on his own shirt, helping to pull up his pants —and zipping them!—and he can pull up his socks, put on his orthotics, and shoes; I help him with most of those things but he does a pretty good job without me, too. He can brush his hair, feed himself with a fork and spoon, and consistently asks for more when he wants it.

My child —the one who is visually impaired, didn’t walk until 15 months ago, and has cerebral palsy —has nearly mastered climbing the stairs —all by himself while holding a toy in one hand — opening regular door knobs, flipping light switches, and can get the lid back on his bottle and screw it shut 7 out of 10 times. He’s figured out how to climb slanted rock walls, small ladders, slide down slides in every possible position, and is learning to not only steer his little bike by its handle bars but is beginning to figure out the concept of pedaling —again, with minimal assistance from us. His motor planning abilities continue to amaze us as does his keen awareness of nearly everything going on around him.

We used to have to encourage him to stand up to walk to the car because he was always so focused on the ground right in front of his feet. Now we have to cajole him to continue walking because he is so busy picking flowers, picking up leaves, chasing squirrels, ringing the doorbell, running to the end of the driveway. It’s pretty cool; annoying sometimes but cool none the less.

Did I mention the daily kisses and giggle-fests with both Mommy and Daddy? The way he takes my hand to walk to the car and signs please to tell me he wants me to come to the park with him and his Daddy? Or the way he rides his bike from the family room to the front door because he heard us say the word park? Or the way he warbles in his beautiful little vibrato to ask me to sing opera for him? And when Miss Rachel is singing on Signing Time, he now grabs my arm and makes me stay to sing along. His current favorite is the “ABC” song (aka “A is for Alex…”). He always sings that when he is happy, happy, happy. And when I sing the last part that goes “X is for x-ray and Y is for yesterday; Z is for zipper and now we are doooone! Hooray!” He collapses in a fit of the giggles and claps wildly for more.

And when he’s sitting alone in his chair and watching Signing Time without me (a rare occurrence I can tell you), I peek around the corner from the kitchen to watch as he flexes his fingers and waves his hands along with Miss Rachel. I don’t know what he’s signing but he’s definitely trying to sign more words.

Tonight, as we were killing time waiting for Daddy to hurry home so we could put Nik to bed, I discovered that Nik recognizes NINE letters of the alphabet —A, B, E, M, N, X, Y, and Z. He can correctly identify them by pointing! We haven’t even begun to work on letter recognition so I know it’s all from the videos and singing. Well, and the fact that my kid is a freaking genius! I was blown away!

So when some doctor tells you “Your child won’t…” or “Don’t get your hopes up,” don’t you dare sell your child out and buy into that crap defeatist attitude. Sometimes all it takes is a belief that it can happen, the determination to create the possibilities —the right environment, the right people— and the ability to love your child more than you fear their labels and limitations.

“There are two lasting bequests we can give our children:

One is roots, the other is wings.”

~ Hodding Carter

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