special needs

by lani

ashal emmanuel is every bit of two years and one month old.

dirty face working, pudgy feet padding, bony hands becoming more deft by the day, he toddles through life pushing his toy drill around in a doll stroller, climbing onto the kitchen table, and releasing his inner rhythm on everything that can possibly be turned into a drum. his chores include cleaning up books and toys, helping unload the dishwasher, bringing shoes to everyone before we go out, and carrying dirty diapers to the diaper pail. while his spoken vocabulary is limited, he signs prodigiously, demonstrating an uncannily sophisticated grasp of concepts such as “stuck,” “pain/hurt,” and indicating his need for self-regulation.

twice a week, on tuesday and wednesday, i dress him up in play clothes and shuttle him to therapyworks nw, a physical/occupational/speech therapy center about 15 minutes from our home. his hands ball up and his little wrists twist as he signs “play” … and i tell him yes, ash, we’re going to play. when we arrive we greet molly and the therapy puppy, barlow, and ash has to stay on the blue floor until the therapist calls him back, and only then can he step onto the orange floor. he’s 2 now, so he understands exactly what he’s supposed to do.

on tuesdays we play with julie. julie is embodied gentleness, with a kind face and eyes sparkling with humor. she is soft-spoken and almost girlish, with a tender wisdom and playful firmness. after taking our shoes off, we play with swings, hammocks, tunnels, trampolines, cars, and the ball pit. sometimes we draw. sometimes we play in water. we do a lot of drumming. as for ash’s parents, julie has taught us about sensory brushing, joint compressions, therapeutic listening, heavy work, and educated our use of weighted blankets, pressure vests, and other sensory/motor objects. this is occupational therapy.

on wednesdays we play with camille. camille’s affect reminds me of professor trelawney from harry potter, but the similarity ends quickly as she displays her creative, deeply rooted, intelligent approach to our sessions. she is decisive and bright eyed, no-nonsense and warm, singing and signing her way through sessions while ash watches and participates with wide eyes. we play with puzzles, small wind-up toys, early board games, and a wealth of fascinating little objects that encourage mouth awareness and spoken communication. this is speech therapy.

how can i describe ash’s improvement since starting these therapies a few months ago? his fine motor skills have improved and his spoken vocabulary is broader and better articulated, but the biggest improvement is in those things that are hard to story and quantify … fewer outbursts of frustration, less anxiety, a sense of stability. he’s just a happier kid now.

we go back and forth on using the phrase “special needs.” it’s a phrase with so much baggage that it almost feels heavy to write.

special needs.

it is severe disability, the pain of parents, “short bus” jokes, the dilemma of labeling children, the tortuous journey of diagnosis, crushing insecurity for labeled children who understand, different classes, constant struggle, the humility of confusion, tears of futility, stares and snap judgments from strangers, the necessary paraphernalia of disability, going to music therapy instead of music lessons, play therapy instead of playing, speech therapy instead of speaking … it’s the difference between being different and being different.

is this our life?

yes and no. because for kids on the border, the line between “normal needs” and “special needs” is not a line. it is a landscape. trails of need and meadows of ability and cliffs of emotional outburst dot the terrain of our days. how can i possibly reduce that to a label? perhaps a better label would be that we are mountain climbers, with a challenging mountain to climb – but it’s not mount everest.

analogies aside, what does this mean? ashal is an intelligent, sparkling, mostly normal toddler. ashal is also a substance affected, attachment trauma-ed child who doesn’t sleep, has significant delays, and struggles through life.

it’s paradoxical, but aren’t all toddlers little paradoxes? though perhaps ours is a bit more than usual.

another huge element in our special needs landscape is the factor of ash’s adoption. rather than using my own words to explore this, here is a quote from an international adoptee friend of ours, from a message sent right after i posted about ashal’s evaluation in october:

When I came over from [omitted], it took me two years to sleep a full night. I was nine months when I came over. I know ash’s adoption wasn’t international. But I do know all adoptions are pretty stressful for the adoptive parents for sure and most specifically for the adopted child.

Like ash, I had many terrors. Even though my language development was advanced, other areas were chronic concerns for my parents. I also came with some health issues: [omitted]. After those things were diagnosed and taken care of, years of chronic illness followed until I was 10. I also had some dissociative mental health issues, including depression and anxiety, that are pretty specific to interracial adoptees. Even though I could speak, it didn’t mean I did…often. From your descriptions of ash, though, you could have been describing me, or any of my adopted friends.

Adopting a child is hard work, the kind of guess work that goes into it much of the time is nothing like what happens with most biological parents and children.

twice a week, on tuesday and wednesday, we are a special needs family, because ash has a special need for specific therapies.

the rest of the week? we navigate the terrain of the border between the lands of special and normal: cliffs and meadows and thunderstorms and scenic views with our little boy who, labels aside, is undoubtedly special.