"...the gaps between Jack and his peers will widen in the coming years, and the difference between his strengths and weaknesses will continue to grow..." ~ An excerpt from a recent developmental evaluation
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5:00 PM. Jack is still napping. It's one of the two days a week he goes to full-day Pre-K, with therapy not interrupting his school day midway through his day. As with all of his full-days, he got off the bus, had a few Cheezits (the ones with letters, of course), and a refreshing glup of milk. When I mentioned "nap time", he let out an angry squeal or a few grunts of protest, followed perhaps by an "All done nappy!" or two. Eventually, after a clean diaper, a story, and a song, he's drifted off - his body no longer able to fight the wave of exhaustion that overcomes him at this point each day.
Two hours later, he's still sleeping, as always. He needs to wake; the prolonged sleep only makes going to bed more difficult. He also needs ample time to eat his dinner. Typically, I would rub his back until he (angrily) wakes, at which point I would change his diaper and take him downstairs, crossing my fingers that he won't be so upset as to trigger a meltdown.
Tonight, however, I hesitate. Something urges me to simply lift my sleeping babe out of his crib and carry him to the rocking chair. He barely moves, but nuzzles his face into my chest as I settle with him in the chair. For a mama who never gets to snuggle with a child who seems to need to resist affection, this is an indulgent treat. My little one - unaware that I have broken that barrier he, or his neurology, constructs - is, for the moment, securely resting in my arms.
As I rock him gently, my hand moves up to his face, just as it did so often when he was an infant. I trace the outline of his lips, his nose, and his ears, all features that belong to either Brian or myself and are duplicated in our boy in miniature. I run my fingers through his hair, which - like mine - maintains a baby-fine texture and is a unique mixture of brunette, blond, and red hair all rolled into one. Like mine, his hair can take on the shade of any of the three, depending on the light.
I breathe deeply and try to remember that deliciously sweet newborn smell that I couldn't get enough of in his infancy. It has been replaced by the smell of the wind, the outdoors, and a day's worth of childhood folly. In many ways, he rests in my arms in the form of a sleeping 4-year old little boy. As my husband reminds me often, he's not a baby anymore, and yet he is. Watching his slumber, one might never know of the challenges he faces seeing him like this.
Despite his chronological age, he still seems almost frozen in time. I look down and see his lips involuntarily move in a suckling motion, a vestige from his infant reflexes. His body is still very small for a 4-year old, as his feeding challenges have made it difficult for him to put on and maintain a healthy weight and height. When he wakes, he will still act - developmentally - like a 24-month old. He will speak like a very young 2-year old. While he will be able to identify all of his letters, numbers, and colors, his reasoning ability will be a the level of a young toddler, as will his social skills, which stay at an infant level.
This might have been a reason for me to scream to the heavens, cursing autism for the challenges brought upon my boy, but I won't. Not today. Because in my arms is a sleeping babe - seemingly suspended in babyhood - for me to love all over and enjoy.
You see, despite the growth in his body, autism and his other disabilities have preserved his babyhood for just a little while longer. While I could be angry that he struggles to speak, I simply cannot at this moment. Autism isn't a developmental stop; it's a developmental delay, but one that has granted me a bit more time cherishing the little joys of babyhood, like that little suckling motion. The babbling that he still engages in from time-to-time. The tininess of his voice that makes him sound much younger than his peers, but that I simply adore.
The way that - in these stolen moments - his little head fits perfectly in the crook of my neck.
In this moment, I don't worry about the milestones missed, the standardized scores or standard deviations behind peers, and the unmet goals. Instead, I enjoy this moment - this fleeting, stolen moment - and feel briefly thankful that I am blessed to get to enjoy his babyhood just a little while longer.