Meanwhile, Progress.

You are about to witness in this short missive the boundless joy coupled with the urge to punch yourself in the head that a parent of a kid with special needs experiences from time to time.
Meanwhile Progress Featured

You are about to witness in this short missive the boundless joy coupled with the urge to punch yourself in the head that a parent of a kid with special needs experiences from time to time.

I need to share a “Julia win” with you that came to light just yesterday. I’m a little embarrassed to say that its realization happened only when I came up for air after dealing with my own agenda of perceived battles.

Julia walked into the house yesterday after Jocelyn picked her up from school. It had been a hot afternoon after the morning thunderstorms; and having a tendency to heat up on the playground, she came in with a special treat under her arm – Jocelyn’s bottle of mineral water.

Julia matter-of-factly carried it around like a little trophy, carefully uncapping it, taking a sip and meticulously replacing the cap. It was an intentional process that she did with a near reverence that struck me almost as ritual; but even in that observation, I wasn’t grasping what was really going on.

It was at dinner that the pieces finally fell into place. She brought the bottle to the table and set it deliberately next to her customary cup of water spiked with a little apple juice. After she finished the juice, she went right back to the mineral water.

She uncapped it, took a sip, and screwed the cap back on.

She uncapped it. And she screwed the cap back on.

Seemingly routine, right? Nope – not for this kid. The realization of it made my temples pulse a little bit. She was doing a new thing right in the middle of my inattention of it.

This clueless dad, whose mind had just been awash in a thousand cares of the day, just sat and watched in dumbfounded awe. My daughter was doing what people do. And it was glorious.

I thought about the moments where I would hold her hands in mine as we snuggled and notice the distressing lack of muscle tone. “They’re mush,” I would think. “There’s no strength in these little fingers. It’s going to be years – if ever – before she’ll be able to write.”

I thought about the recent meeting with her school Occupational Therapist when we talked through the progress of her goals to get ready to get ready to write. It’s taken a little assertiveness to keep those goals on her IEP (i.e. Individualized Education Plan), and her OT works valiantly through Julia’s balking and frustration to maintain some kind of forward progress. When we ask how things are going, she smiles in her professional way and says “It’s going.”

I even remembered my moments of anxiety and anguish as I watched her take a stab at the little plastic puzzle that topped her favorite drink. I may never know if it was her frustration or mine that would nudge me to pour it into a covered tumbler with her favorite squiggly straw.

It’s a big job – for both of us. The complexity of getting all of those digits strengthened and working together in concert is nothing short of miraculous – even as my own fingers are typing away at a blinding 40-50 words per minute.

But the bigger miracle might be my just sitting there once in a while and letting her figure it out.

I still marvel over how these revelations unfold.

I wonder sometimes if we as parents work so closely that it’s tough to recognize and celebrate the incremental progress that stubbornly reveals itself when we actually slow down and take notice.

For myself, I am far too often focused on juggling long term financial planning, getting our schedules coordinated with work and personal commitments, getting in an occasional date night and fitting in a photo gig – all the while keeping an eye on Julia to make sure she isn’t chewing on her hair.

One thing at a time is our best strategy, but I’d be lying if I didn’t say it can get overwhelming sometimes. We have to pick our battles. We’ve chosen her speech delay as the primary focus for our limited resources; but looking more globally at all of the other delays in just about every other domain can leave me in an exhausted stasis.

And in the meantime, Julia just keeps… progressing.

At her pace.

In her time.

As her desire is shaped and motivated.

And in that sublime moment at the dinner table, I heard a little voice from that space of Love that I far too often ignore:

“Keep at it, dad. But at the same time – relax. She and I have got this.”

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