Avi Rubin, My son, My inspiration
By Tamara Rubin
Founder, Lead Safe America Foundation
He has come such a long way in these ten years…
His acute poisoning had been accompanied immediately by extreme and violent symptoms—like a severe flu, but without a fever.
Following his poisoning, he changed—virtually overnight [from the time he entered this world, he had always been so remarkably peaceful and blissfully content that everyone marveled at him—he had acquired the nickname “Buddha Baby”]; suddenly he was transformed into a chronically inconsolable, cranky child—who was sickly for years to come…he seemed to no longer have a normally functioning immune system—his frequent fevers would always spike to 105; he had febrile seizures; he developed severe allergic reactions to food and medicine (including life-threatening hives); he was hospitalized for 5 days for a “mysterious cluster of symptoms” that doctors couldn’t quite diagnose… After having been a great sleeper for his first seven months of life, he now habitually refused to sleep—and when we did get him down he would not sleep well – he had night terrors and woke up frequently, screaming and writhing as if in pain. We would need to restrain him by wrapping him in blankets so he would not harm himself.
As he hit his toddler years, his crankiness developed into aggression without provocation, and a complete lack of impulse control – far beyond what one might expect for the “Terrible Twos.” Three was a particularly bad year—highlights: he threw a solid block of legos at my face, splitting my lip open, and on another occasion threw a garden trowel at his brother’s head – splitting it open (big brother required many staples to put things back together!) and when asked why he had done that, he [rather ominously] explained, “I did not know he had a head”!
We were told by many experts that the extent of the impacts couldn’t be totally known—and some wouldn’t even be seen—until he got older, because the frontal lobe damage caused by lead was hard to predict (and that that is also the very last structure of the brain to develop). When he was six years old – almost seven, Dr. Lidsky did a full neuro-psychological assessment and a Portland clinic did a complete pediatric behavioral assessment to help us understand what we could expect and what might help him succeed. It was then we learned that (as might be predictable with a lead-exposed child) even though he had a 130 I.Q., his visual memory was in the fourth percentile [No, the Dr. hadn’t said, “ninety-‘fourth'”, or “seventy-‘fourth'”—not even “fortieth”—but “fourth” percentile!] We were floored—this completely explained his inability to read (he wasn’t even able to read “Go, Dog Go” [when his older brother had been reading “Harry Potter” at the same age]! Of course he couldn’t read—if his visual memory is so profoundly impaired that in the time it takes to register what letter he is looking at, he has already forgotten the letter that came before it!
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I think the day we got him a kitten was a big turning point; we realized the benefit of positive sensory stimuli [as well as provoking/supporting critical empathetic development], and from then on we did everything we could to reach him in that way. About that time, we also found a used 2-person hot tub on Craig’s List, which served well as a therapy tub—to soothe and calm him and help a bit with his severe plaque psoriasis—and we found a local saltwater pool, and started taking him swimming at every opportunity. We tried to keep him outside in nature—and simultaneously away from screen media—as much as possible (not an easy thing do when a child has OCD and video games are like an opiate that “calms him down”!)
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Next came the challenges with school:
finding a school where the teaching methodologies would focus on his strengths and give him an opportunity to succeed was nearly impossible…finding a school that would not use testing to compare him to/pit him against other children his same age—yet that would address his passionate thirst for knowledge and work around his inability to read…finding a community where the children would not make fun of him for his disabilities [that is an ongoing challenge]!
We found the perfect school when he was 8 [small, mixed-age groups and rotating task, collaborative, engaging, project-oriented curriculum—with a three teachers-to-seventeen-students ratio(!)]—but as we were later to learn, it was fatally underfunded, and after a few months of finally experiencing great relief and a new-found optimism, Avi’s beloved, unique and wonderful new school simply closed down permanently one day with no warning and we were left “school-less” yet again! We were heartbroken and worried.
Then, when we thought we had found another school that would work for him, we discovered that school—and many others we were looking at—all actually had active lead hazards! With all we had been through, we could not expose our baby to even more lead – even if others were (unknowingly) sending their children to these toxic facilities! And throughout all of this, home-schooling (while also trying to work and keep a roof over our heads!)…choosing books to read, workbooks to practice in and educational programs to watch to keep him stimulated and engaged.
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Now, – turning ten – Avi is finally learning to read… while he’s still far from being able to read books, he’s getting excited about recognizing words in street signs and menus and reading words he encounters in his environment! [His brothers (both older and younger) are very helpful with reading game instructions and other things around the house that most boys his age would have no trouble reading.]
Avi loves music, and has an amazing memory for sounds, especially melodies—from pop-tunes, to jazz standards to classical symphonies! [His favorite song is Mark Murphy’s version of Antonio Carlos Jobim’s haunting Brazilian jazz standard, “The Waters of March.”]
We’re thankful for educational programs like “Cosmos” and “Connections”- as he will watch them over and over again until he is intimately familiar with the stories, all the specific details, chronology and advanced concepts presented—so he’s learning about planets and astrophysics, geology, archeology, general history, physics, technological history, and more – even though he cannot read! He says he’d like to be an astronaut when he grows up (but he says he knows that sometimes you can’t be what you want to be, because “not everyone can be an astronaut” – so maybe he’ll be painter (he said tonight) – an artist.)
In the end (and we’re far from “the end”) Avi’s our love-bug and we love him to pieces! We’re so proud of the incredible progress he’s made—and the great little guy he has become, yet we still worry about his future and the challenges he will face. Challenges we have no way to predict.
Most important though, is that we are able to share our personal experience with you as a “cautionary tale”, a way to educate others (while we educate ourselves along the way) – sharing what we learn so hopefully other families don’t have to face the struggles we face everyday.
– Thank you for reading.