Post#15 Learning Disabilities Who? Child and Parents
“Can you remember who you were, before the world told you who you should be?”[i]
Yasik came into Dave and my life at four and a half from an orphanage in Russia. Within an hour of meeting us, he had discarded fear, showing his parents-to-be full on Yasik, happily off to shop with total strangers and charming shopkeepers along the way. Twenty-four hours later, while he was submitting to being stripped of a pink T-shirt, tights and scuffed, too small girl’s shoes in the office of the orphanage, we were being told he liked to play with cars, to draw, learn poems by heart, watch cartoons and he liked to be read to. No mention of a learning disability was on the list.
In fact, the orphanage resume seemed to grow as we watched unrestrained curiosity about how things work. It seemed boundless – from switching on lights to every gadget he came across- the TV, a flashlight, a water pistol, and earphones on the airplane with the added wonder of the music filling his little head.
Being confronted with a new country, a new home and surrounded by new people who were pulling him into their lives, this happy curiosity, accompanied by unrestrained chatter in a kind of Russlish, showed no signs of restraint.
Nor was there any hesitancy displaying natural charm. When Dave delivered a fatherly warning, Yasik came back with, “Be Happy Poppa”. He would remind me to “Kiss Poppa” as we set out on a bike ride.
Do I sound like a proud momma. Wouldn’t you? He was picture-book beautiful, with soft blond hair, a heart-captivating smile and exuberance about every little daily thing.
A friend brought her kid over to play from time to time. This kid, Jake, was a bit older and bigger. When they first spent time together, Yasik did his best to get Jake to notice him but Jake was not impressed with this little kid with a slightly left of center eyeball and little intelligible English. Barely 2 months later, Yasik was no longerinterested in trying to impress. He was confident that he knew how things worked, he was good at ball and bike (though I think he was still supported by training wheels and fearful of having them taken off). He was oblivious – he was just having fun, singing Russian songs while biking, full of happy confidence. When he fell or couldn’t quite handle something he didn’t quit; he tried again until he got it. Or told us that telephone pole was in the way and needed to be moved. He set Jake back on his heels a bit and soon they were partners in fun.
All of this charm, curiosity and confidence was infused with unrestrained imagination. One free weekend we took the ferry over to Lake Cowichan and while we are driving Dave noticed Yasik reaching out the window and grabbing handfuls of air and putting them in his mouth. At first shy to say what he was doing, he told Dave, “I can’t eat the sunshine. I am just pretending”.
This is how we, his parents with love glazed eyes, saw our son. We must have communicated this quite successfully to the social worker. Her post-adoption reports said, Yasik is a bright and good thinker. … His parents describe him as “compassionate, mischievous, direct”. He is curious about the world around him and is capable of being very focused and is very observant…[although] he is bossy and tries to get everything right… He likes to figure out how to do everything himself. He can at times dissolve in frustration when he cannot handle something difficult… At the beginning of a new activity, he stands to the side and observes. Once he decides to commit himself, he does it fully. It seemed to us that the report recognized Yasik at his core.
But somewhere along the way between grade 1 and grade 2 that core was being tampered with, shaving away at this core. Or forcing it down deep in his being to somewhere he became steadily more and more reluctant to bring back out into the sunshine.
This change began with Dave and I, and then settled into a constant with each year Yasik was in school.
I’ve read that behind the success of every disabled child is a passionately committed, intensely engaged, and totally empowered parent.[ii] As I have brought forward in earlier posts, I can’t confidently say we were up to any of those adverbs fronting such fierce adjectives.
We slipped into the parenting roles we understood: providing a routine with regular eating and sleeping hours, school and play: tree forts, soccer, computer games and cartoons. We wasted little time getting on him for letters and numbers and signing him up for piano lessons with short practice sessions at home. We watched videos together on the weekends and read each night, some for school and always as a bedtime routine.
He’d been in kindergarten only a month when we read a book with him called Bump, Bump, Bump; for us, bedtime reading was as much about helping Yasik learn to read as it was about easing him into sleepiness. I don’t remember what this book was about but likely it said very little more than ‘bump, bump, bump’. Our plan was for Yasik to repeat the words after us. He only wiggled and listened but wouldn’t read. Instead, he asked for ‘confety’ (Russlish for candy?). We bargained, “OK, if you read with us”. And just like that we were bargaining, some might say bribing in exchange for reading. And what do you expect? It worked, so far so good.
Parents are not always quick to see that their child’s experience is slipping toward problematic for it happens often gradually and mixed in with all the gloriously normal parts of a day.[iii] In fact, we were seriously surprised at Yasik’s difficulties when he went to school for we saw him as very quick.
It has even been suggested that it is probably the gift [parents give] … not being around enough what with work etc. to interfere more. Besides which, it is hard to gauge what is “normal” and what is less than normal within the confines of home and family life[iv]. Convenient too, considering the demands of our daily life.
We thought we saw improvement in his printing, reading and piano. He even did some practice on his own and he seemed to like getting the music together, showing an interest in hearing and creating his own sounds and putting words into the songs sometimes.
There was a time Yasik and I were reading; at one point while he was reading, he looked up at me and gave me the most brilliantly sweet smile I have ever seen. It made me blink. Something about reading made him happy.
As many reading advice books suggest, children are most likely to be lured into reading when it offers them something they want to know. Yasik’s first ‘real’ reading was with the TV Guide. He was checking times for a movie called After the Silence and there really was one that came out in 1996 about a deaf and illiterate woman. He found the title, sounding it out and showing evident happiness with his success.
We, his parents who engaged with him for all the hours outside the five week-day hours at school, were not seeing any reason to be concerned about his progress in reading for we like most parents had a deep need for our children to be all right. … Sometimes it’s much easier to bury our heads in the sand and deny that there is a problem[v]. I actually wrote at one point that life works better for me if it’s more black and white.
After all, we were doing what decent, loving parents do: provide as best they can for the physical, mental, emotional well-being of their children. The little school down by the community playground said we needed to sign Yasik up for school three weeks after he arrived in Canada as our son. We signed him up and lock stepped with all the neighbourhood parents in walking him to school each morning and picking him up afterward, armed with more homework than most of the kids in his classroom, certainly more than he ever wanted.
The change was gradual but with each passing year we were seeing that curious little charmer become weighted by something he certainly didn’t like or understand. And so the time came when we had to begin to recognize we too didn’t like what was happening nor did we understand it. We were caught between Yasik’s unhappiness and our school system’s expectations for it was “the only answer”[vi], yet we slid into this struggle because ultimately we agreed with the school that it was ‘for the best’ even though both Dave and I had also experienced some level of difficulty navigating grade one. And now I wonder, best for whom, the school system, expectations we place on ourselves, or expectations of those around us?
But yes this is a question I temper with the ‘essential paradoxes’[vii] of life in our times.
From that first attempt to bargain with us for ‘confety’ to more and more frustrating tug-of-war engagements alternating between bribes and threats, we felt we are working in the dark, looking for a break through. Yasik, in turn alternating between snarky and sweet, needed our support, not our push, but we fervently believed he also needed to read. We tried competitions, made up stories, found games on the computer.
One morning I was sitting with Yasik, pushing him to put in his 15 minutes of pre-school practice. He made some mistake playing Sweetly Sings The Donkey, and ended up pounding the keys, yelling “Stupid, Stupid, Stupid”. I wondered if that was the usual route to great music.
In our defense we weren’t all about expectation and push. We tried most of the ways we heard about to help. We considered enrolling him in a Waldorf school about an hour’s drive each morning and each afternoon. Yasik was on board because it offered learning through play. Dave took an intense Orten Gillingham training course to tutor Yasik. Dave spent 4-5 hours the night before each class prepping the lesson with games, exercises, rule-teaching cartoons to offer a lesson as multisensory as possible. Being the only male and the only non-teacher in the group there were times he felt so defeated that he cried all the way home. The silver lining perhaps was that it left him, not with a teaching certificate, but more sensitive to Yasik’s struggle. And most importantly Dave could tell Yasik with sincerity that the problem wasn’t his, but the tutor’s, if Yasik wasn’t getting it.
Dave and I even resorted to prayer, lying in bed asking God to help us get an effective tutor, or maybe at that time any tutor. Pascal’s wager…
Nonetheless, by the time he was in high school, slowly and steadily, we were letting go: cancelled piano, didn’t sign up for soccer, actually switched to golf for the three of us. It worked for a bit. Paintball was a strong draw for a while too. One semester in the self-paced school he went to for grades 8 and 9, he tried to keep his report card from us, a report card that revealed some serious incompletes. We pulled a coming paintball tournament out of our dwindling arsenal of threats. He got right at working on some of the lesson packages. I noted at the time (optimistically?) ‘so with threats and bribes we limp along to maturity’. Elizabeth Guthrie would not agree, saying, Reward effort, not results. Don’t punish poor marks[viii].
As a student with learning challenges struggling against parents who believed nothing, and I mean nothing, was more important than a solid education, fighting about doing homework was a nightly ritual by now.
One night stood out. It started out as just another night with a flare up over getting homework done. Of course, there was more than just the tired, after work, homework conflict at stake. We were in the midst of another threat of flooding. TV weather reports had us uptight about the North Alouette pouring down the road instead of flowing sensibly under the too narrow bridge at 224 St. and 232nd Ave. If Yasik was angry, we were tense too; none of our tempers would have been at Calm on the emotional dial.
My journal entry of the night does not detail the fight we engaged in but does note that Yasik was arguing to go paintballing or skiing and we are countering with a negotiation of homework first. The fight escalated. Yasik, who deeply, though sometimes selectively believed (you might read ‘stubbornly’ here) in justice, wasn’t giving in. He left the house. Did he grab a coat? Did he slam the cheaply made front door? The journal doesn’t say, but it is likely on that cold, wet night threatening a flood, he was jacketless. Going outside into a night that did not warmly embrace his anger probably gave him a slow down as well because, apparently, he went only as far as the front patio. A probation officer once noted that most runaways opt for warm summer nights.
The first time your kid does that, you stop a moment.
Dave clicked in first, pulling a jacket on and going out after him, thinking Yasik was running off somewhere more in line with a great teen drama of fiction than merely hiding out under the eaves. I guess when it is your first move into rebellion you don’t always work out a detailed plan. Yasik let his dad go off on a goose chase, slipping back in the house while Dave was out blindly checking up and down a rainy street boasting one lone streetlight on the corner.
Those of you who have a Bible-infused background may remember the verse in the gospel of Luke (my version) that goes, “Mary kept all these things and pondered them in her heart” referring to the unusual activities of her firstborn, Jesus. This was the piece of the evening I continued to ponder in my heart for a long time after: when Yasik came back into the house it was not with more fighting or cold slamming of doors. Instead Yasik came into our bedroom; I reached out to him and held him. While we stood there, me crying and shaken, Yasik said, “I always wanted to do that.” Whaaat?
Years later, we took Yasik out for dinner to celebrate his 21st birthday, all the while hoping to coax him back toward school. He went direct on us, letting us know what turning 21 meant to him, “Now I don’t have to learn anything anymore.”
To me it felt like defeat; he was not who the world had told him or us who he should be. Did he remember who he was, the learning he did so effortlessly once upon a time? Or for that matter who he could be? Did we remember who we as parents had once been, the pride we had taken in his curiosity, confidence and charm? Or for that matter who we as parents needed to be?
Footnotes
[i] Google: Charles Bukowski Quotes. Charles Bukowski: A Little Book of Essential Quotes on… Can you remember who you were, before the world told you who you should be?
[ii] Shaywitz, Sally, M.D. and Jonathan Shaywitz, M.D. Overcoming Dyslexia, 2nd ed. Alfred A Knopf, 2020, 9
[iii] Fradin, Kelly, MD Advanced Parenting: advice for helping kids through diagnoses, differences, and mental health challenges Hachette Book Group, 2023 13, 14, 15
[iv]Guthrie, Elizabeth M.D. and Kathy Matthews The Trouble with Perfect: how parents can avoid the over-achievement trap and still raise successful children Harmony, 2002, 192
[v] Fradin, Kelly, MD Advanced Parenting: advice for helping kids through diagnoses, differences, and mental health challenges Hachette Book Group, 2023, 13, 14, 15
[vi] Fisher, Naomi A Different Way to Learn: neurodiversity and self-directed education Jessica Kingsley Publishers, 2023, 36
[vii] Nafisi, Azar. Reading Lolita in Tehran: a memoir in reading Random House, 2003, 86
[viii] Guthrie, Elizabeth M.D. and Kathy Matthews The Trouble with Perfect: how parents can avoid the over-achievement trap and still raise successful children Harmony, 2002, 180
