June 11, 2010. Week One of our Due Process Hearing is complete with no end in sight. This morning I call the Center for Spectrum Services to investigate possible appropriate programs for Peter. The name of the school is self-explanatory, so suffice it to say it’s the only game in town that has a self-contained program for high-functioning autistics. Within a 90-mile radius of where we live, however, there are no special education schools that accept private pay students; all students must be referred through their local school district. This puts us in a definite pinch. If the school agreed to refer Peter, and if the autism school had an opening and agreed to accept him, its possible that he could attend and actually receive some neurocognitive rehabilitation for his deteriorating brain. I shouldn’t and won’t talk about the details of the hearing right now, but I will share something interesting I learned on the phone. The woman from the autism school tells me there are kids in the high-functioning program with average and above average IQs, some are working above or at grade level, at least in certain subjects, and that their social skills run the gambit. Peter would have higher functioning peers there, which certainly is preferable though not a necessity given the scarcity of options. But when I ask whether any of the children have toileting issues, the woman emphatically replies no. When I relay the fact that Peter is incontinent, she explains that he absolutely would have to be placed in a lower functioning classroom with staff trained and certified to address fundamental life skills. Despite the fact that Peter cannot be enrolled in a program for high-functioning autistic children because he’s not toilet trained, his school nonetheless continues to insist he’s perfectly suited for and is thriving in the inclusion classroom that consists of 16 regular education students and 6 special education students. Never mind that the teacher cannot be present in the bathroom to ascertain whether he toilets (as opposed to stares at the ceiling), cleans himself, or washes his hands. Never mind that she or anyone else in the school cannot physically check to see whether he’s wet. How can he be high-functioning enough for a regular public school classroom but not a self-contained program for autistic children? I feel like I’m in warp world, trapped in one of Peter’s confused mindsets where nothing that’s heard, seen, or experienced makes a lick of sense. The saddest part about the way I’ve been feeling lately is that its exactly the way Peter feels every day, this particular day being no exception. Lindy comes upstairs this afternoon after her session with Peter to report that she found him in the bathroom pouring water and liquid soap on the cat’s back. He perseverates over liquid soap bottles to such an extent that I’ve removed them from our bathrooms, though I obviously forgot to check the basement. At dinner I try to coax Peter into biting his room-temperature strawberries with his front teeth instead of his back molars so that he doesn’t spread strawberry juice all over his face, nose, and chin. On the cusp of success, I suppress a smile as I watch him bite into a strawberry in a normal fashion, for the first time, to my knowledge, in his life. But then he yelps, squints his eyes, and covers his mouth with both hands. “It hurts!” he cries. “Why you make me do that, Mom?” He can’t bear the sensation so I praise him for trying and quickly try to distract him. The last but not least noteworthy event in Peter’s confused day has to do with Sophie complaining about the sudden disappearance of her Lego creation, which she thought she left on her bed. Several weeks ago Peter had some Legos taken away for bad behavior. When Sophie asks about her missing Legos, he immediately launches into a diatribe about how I took them away because of his behavior. The long past memory assaults his presently firing synapses with the unrelenting ferocity of a B-52 bomber jet. Rocking and covering both ears with his hands, he begins his increasingly familiar high-pitched humming and then switches to mumbling about Legos and washing machines and hating Sophie. At one point Pat and I thought we calmed him down enough to understand that he wasn’t in trouble, that he misheard what Sophie said, and that he was confusing what happened weeks ago with his sister’s question tonight. “My head gets confused, Mom,” he says, as I walk him gently upstairs. When we reach his room, Sophie pops out to say that the missing Legos have been found and all is well. Simply hearing the word Lego sends Peter into a tailspin again and the entire ordeal begins anew. Last weekend we learned our son’s IQ dropped 10 points in the last 2 years and his previously unorganized thought processes have transformed into profoundly unorganized thought processes. At this rate he’ll be a babbling, terrified idiot in diapers by the time he’s 12. We brought him from Russia to give him a better life and a more hopeful future. There was a time, after we discovered at least some of his disabilities, when Pat and I consoled ourselves with the knowledge that he still would benefit from our love and the resources available in our country. But sometimes I think we were just fooling ourselves, looking for a silver lining that existed only in our dreams. It seems we hauled this poor boy half way around the world to dangle relief and rehabilitation in front of him like a colorful lollipop held just beyond reach. He’s been victimized by institutions in this country to the same extent, and arguably more, than he ever was in Russia. The only difference is that here, in Red Hook, New York, USA, there are beautiful flowers and well-tended playgrounds adorning the institution known as our local public school, and the bureaucrats that are exercising their unilateral will over our son’s future don’t get drunk every night on Vodka to escape their unfulfilled existences. They drive Volvos and coach Little League on the weekends.