June 7, 2010. Pat and I let the children sleep late because we didn’t get home from our neuropsychological testing weekend until 10:30 last night. Bad weather and beach traffic conspired to rob us of a swift return. We hiccupped along the highway in stops and starts, the windshield wipers frenzied with effort, as the kids watched movies on the portable DVD. Lindy made the trip with us. The inevitable lulls in conversation left more than enough time for Pat and I to immerse ourselves in unspoken hysteria. Two years and one month ago, Peter’s IQ was in the low average range. After a long day of testing, Dr. Federici informs us our son has lost significant cognitive ground since he saw him last in 2008. About ten points in fact. His IQ is now considered borderline, he is having visual and auditory delusions/hallucinations, which we unfortunately suspected, and our son has made no academic gains whatsoever in two years. Our boy, to use Dr. Federici’s words, is stagnating academically and deteriorating neurologically. His brain is not being exercised and its dying, slowly but surely. That is the bad news, and its devastating and hard to hear. But with the help of Lithium and our imperfect but devoted efforts at home, Dr. Federici also saw, for the first time, the sweet, loving, and compassionate child I’m honored to call my son. That in itself is a major miracle, and one I mustn’t overlook in the midst of our grave worries. Peter was nothing short of feral, a regular jungle boy in madras shorts and fisherman sandals, when we first drove out of sheer desperation the six-hours to see Dr. Federici in May 2006. He believes we’re nearing the finish line, if not quite over it, in terms of solid and secure attachment. Given the extent of Peter’s deficits, and all we’ve suffered and endured, my eyes filled with tears to hear this glorious pronouncement, even in the midst of Dr. Federici’s accounting of our son’s cognitive decay. Our Due Process Hearing against the school district starts Wednesday. I don’t hold out much hope that the school will suddenly see the light and acknowledge it can’t meet our son’s needs, that having him sit through the day and do as he’s told, without an ounce of understanding about what he’s doing or why, is literally causing deterioration. But strange as it sounds, I think I’m reaching some kind of peace about our situation. Peter will not be going back to that school. He can’t afford to lose any more IQ points and we can’t afford to have CPS come knocking every time we get in their faces about the inadequacies and misplaced emphasis of their efforts. Dr. Federici says the crime in all of this is that our son is educable, that he can learn and he can make progress. But the few hours a week Lindy works with Peter, one on one, using verbal behavior and other neurocognitive rehabilitation techniques, isn’t nearly enough to maintain his functional skills. He needs Lindy-like interventions around the clock, all day long, but there’s no way we can meet those needs privately. Lindy is too busy, she teaches severely autistic children all day long, and we are plumb out of funds. But we’ll find a way. We’ll either prevail at hearing or I’ll do it myself. If we can take a feral child and transform him into the sweet, loving person he is today, especially when someone is with him, one on one, to help modulate his mood and impulses, we can improve his brain function. None of this is rocket science. Peter is brain damaged. He’s operating academically and socially approximately 3 years behind his peers. So that’s where we start. We find out what in fact he does know, what he’s able to generalize across different settings and without being prompted, and we build from there. And when it gets too tough, when I think I can’t do it anymore, I have to remind myself how far we’ve come. I’ll remember back to Saturday night, when we sat in The Tombs, eating dinner with my nephew Jay, who is now a rising senior at Georgetown. A young man whose brilliance of mind and heart shines uncontrovertibly bright, he was sandwiched between Peter and Sophie, happily indulging his little cousins as they clamored for every ounce of his attention. Peter now belongs, and he knows it. We’ve given him that. He has a family who loves him, who’s more or less hearty and jovial enough at least to try and laugh when he exasperates them, which is by all accounts often enough. He’s no longer alone, that tiny boy in Russia fighting for his own survival, chubby little toddler hands, thanks to FAS, tied behind his back. He’s part of us and he’ll never have to fight to survive again. It’s our job now, and though it’s the toughest work I’ve ever done, I’ll never abandon him.