At the age when most babies are beginning to use their first words, my little brother remained non-verbal. My parents went to a doctor regarding this. The doctor said, “Wait, see what happens.” My parents waited. Time passed and the doctor confirmed that he was experiencing a significant speech delay.
More time passed. At a certain point…around the age my brother was a toddler…my parents believed that he was beginning to use words, but that he was struggling to enunciate them correctly. And a specialist confirmed this. He was speaking, finally, but he had a severe impediment.
So for the first five or six years of my brothers life, he found words to be an enormous challenge. My parents and I, we could understand much of what he was saying…we slowly learned to decode his sounds and gestures…but to anyone not with him on a daily basis, he was unintelligible.
Even for us, it was difficult. He would talk, talk some more. We would get bits and pieces, understand one word in five, then have to guess as to the overall meaning of his statements. His writing was even more delayed than his speech, so we had trouble finding ways around his difficulty with words. We just listened and struggled through the decoding process.
This made him angry. If repeated attempts to communicate failed, he would despair, begin to scream and cry. Understandably, he would get so frustrated. He would say something…repeat it…then repeat it louder…then pull his hair, cry.
He saw a speech therapist to help him with the muscular component of speech. He had to learn to make the right shapes with his mouth, to match up the words in his mind with the physical mechanics of speaking.
And it worked. By the time he was five or six, he was speaking more clearly, to the point that anyone could understand him. He still had an impediment, an “accent” my mom called it. That persisted for years, a certain muffled quality to his words…but even that faded away eventually.
I’m only a few years older than he is, but my memories of that time period are sharp, painful.
I remember one day, when he was around 4 years old, he was frantic to communicate something. He spoke a few words, repeated them, then cried. And it seemed like he was wanting something, a specific action or object. He was visibly agitated.
Mom said, “Honey, can you point to it? I don’t know what you want. Help me understand.”
He repeated the sentence, slowly, loudly; his face red with frustration. Then he repeated the sentence many times in a row, over and over, until my mom began to cry. She said, “I don’t understand, honey. Can you point to what you want?”
He gave up; rolled around on the floor, screamed.
Once he could speak, his teachers integrated him into the regular classes at school. He had a variety of learning disabilities, though, so his work load had to be tailored to his skill level.
His primary difficulty was dyslexia. It was severe and he would later say that words were not just reversed on the page, they appeared to move. They couldn’t settle, fix in his mind. For him, words were shifting, ephemeral things.
Dyslexia also made him angry. He would look at a word, try to pin it down with his eyes, but he just couldn’t capture it, not easily. Reading was a constant struggle.
To manage this, my parents sent him to an after school learning center that specialized in dyslexia. There, he was able to get one-on-one attention from a mentor, who spent an hour each session working with him on reading exercises. I don’t know what this entailed, specifically. But a few times a week, 6 to 7pm, my brother would go to this center, work on his reading skills.
So, there was a mentor…there were reading exercises…but what I mostly remember is that these remedial efforts were largely predicated on a token system. The mentor would work with my brother on a variety of exercises, and if my brother performed well, he would be given a small gift.
The tokens were these little plastic bears. They were small, maybe an inch high; most of them blue or yellow or red.
Each each session, he would leave the center with a pocket-full of these bears. I’d see him walk in the front door…dump the bears on the kitchen counter…plop down in front of the television. My mom would scoop the bears up, count them, say “Wow, seven! Good job tonight honey!” He wouldn’t say anything in response. He would just cross his arms, watch television.
My parents were encouraged to implement the same token system at home. When he began at the center, they were given a box filled to the top with little multi-colored bears.
If my brother attempted to read a book, he was given a bear. If he saw a word on the television screen and read it out loud, he was given a bear. Good reports from school, completing homework, reading billboards: more bears.
Over the three years that he attended the learning center, my brother accumulated hundreds and hundreds of the plastic bears. They became a ubiquitous presence in our lives. They permeated every nook and cranny of the house…you’d see them anywhere you looked; on counter tops, in drawers, scattered on the carpet. Exclamations of “Ouch!” usually meant a bear and bare foot had collided.
They liked to find their way into pockets, which meant that a batch of them would inevitably make it into each load of laundry. Clothes would be washed…put in the dryer…and that’s when the rattling would begin. Someone would ask, “What’s that rattling sound?” And mom would say, “Bears in the dryer. Again.”
Years after he had left the center, we would lift couch cushions…look under beds…and find them.
My brother was indifferent to the plastic bears. He didn’t dislike them, but he didn’t like them either. He was never motivated to earn more, to collect more. And after a certain point, there were so many available to him…so many crammed into drawers and pockets and piled about the house…that they lost whatever novelty value they might have initially held. The little plastic bears were everywhere, and therefore pointless. (If a token system functions like a currency, the same basic rules will apply. In this case, inflation kicked in.)
Three years at the center, and the impact was negligible. His reading skills stayed at the same level, his grades did not improve.
His mood was the only thing to change over the years. His anger steadily increased.
I don’t know why I’m sharing this memory. I don’t know if there is a lesson or point. I just know, today, when I read about programs and centers offering hope for special needs…when I read about systems and cures and experts…I don’t always have a very good feeling.
I have a suspicion that help…the kind that is actually helpful…can only happen with an understanding of individuals; it can only happen when a mind reaches out to another mind. And too often, programs and systems rest on broad rules and generalizations. They are made for people in the abstract, but never a specific person.
So, no story with a moral. No answers. Just memories. And the images they create in my mind:
Centers and programs lumbering along, turning into machines.
Machines forever busy digging vast holes, creating spaces to bury their waste…their candy and coins and plastic bears.
Machines lost in landfills of futile tokens.