1990 - Battles for Jared; Linda makes the diagnosis for NIH; Jared walks, her reward; Noah blossoms; Contemplating a third child
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Linda was tireless though it surely exhausted her. Against great social and political inertia, she never gave up, browbeating and constantly challenging-pressuring resistant school authorities. She refused to have him warehoused into a custodial setting, and persevered getting Jared “mainstreamed”, having him within the “normal” public school system but with his own special needs accommodated program, socializing him with his normative peers. Years later, schoolmates would come up to Jared in the grocery store and smilingly recall the school days they had together.
As for the cause and a treatment for his condition, she labored just as ceaselessly to find out what was not right, and what they might do. Contacting support groups, alternative practitioners from macrobiotic gurus (one who blamed Jared’s condition on them smoking pot before she conceived!) to Hemi-Synch brain wave coordination with music headphones from the Monroe Institute, to craniosacral massage/manipulation.
The worst was “Doman-Delacato”, an intensive multiple-times daily movement routine to “pattern” the affected child, to overcome “non-circuits”. It was so consuming that their research found little success and a trail of broken marriages, as blame and “never give ups” in a marriage with a disabled child exceeded human and relationship tolerances.
Pressuring NIH, yes, she also did that! Indeed, through her investigations she made the diagnosis: Angleman Syndrome, formerly “The Happy Puppet Syndrome”. NIH did not at first believe her, but checked it out, and had a Grand Rounds acknowledging her and the condition, and educating their own august experts. Not that it made a huge practical difference, but it did encourage Linda that there was much they could do to have their angel-child fully experience and appreciate life, and with them.
Linda shepherded their first son, too. She enrolled him in a posh but rigorous Montessori middle school where he began to fail all grades. Was it the attention given Jared? A reflection of the low-intensity but chronic and increasing stress in his parents’ relationship? Nah, as legit and likely present as those may have been, it was much simpler: he couldn’t see! Once he got glasses, he did fine.
His passion and goal? At that time: to become “a lacrosse god!”. He loved the game, until one scrimmage a boy twice his height and weight somehow misplaced in the same competition class, crashed into Noah and the reality of hurling one’s body around became more dubious to him. From then on, it seemed he favored his brains and “good looks”. In fact, he concocted a scheme whereby he would be a computer scientist and have a dozen children working in a salt mine to support him!
They labored on a school science project. Demonstrating the aerodynamics of a model rocket, they constructed a small box wind tunnel, using sage smudge sticks and a fan to illustrate the jet-stream and turbulence. Unfortunately, it caught fire or at least generated so much smoke in class they had to spray water on it to avoid a general fire alarm. But he won a prize, likely for boldness if not execution!
Only a “gleam in their eye” at that time, nonetheless, Linda’s yearning manifested, and they conceived their only girl child late that year.