April 28, 2010. I’ve spent the better part of this week drafting yet another Due Process Hearing Request regarding Peter’s education, or lack thereof. Boy, is this a system stacked against parents and capable of great manipulation on the part of educators and district administrators. Despite our experiences with the public school system, I still cling to the perhaps naive believe that most folks are honest and capable of acting in another’s best interest. Pat and I try hard to raise our children to embrace this fundamental hope and I don’t want to prove myself a hypocrite. So for today, I’ll spare the rant that’s itching to bust onto the page. Instead, I’ll think about Peter, what it is we’re fighting for, and what we hope to gain. If I were writing a list of the skills I think our son needs to have by the time he’s say, 25, it might look something like this: 1) daytime and nighttime continence; 2) reading skills necessary for at least semi- independent life – reading road signs, food labels, bus route maps, etc.; 3) tying his own shoes; 4) the ability to say no when someone asks him to do something he knows is wrong; 5) independent hygiene and grooming; 6) telling time, being able to estimate the passage of time, and understanding basic concepts of time such as last week, next year, or the day after tomorrow; 7) eating and swallowing without being supervised; 8) knowing when to put on or take off a jacket; 9) accepting basic responsibility for his actions; 9) resisting inappropriate sexual and/or perseverative impulses; 10) engaging in reciprocal conversation; 10) the willingness and ability to use props, such as a planner and lists, to help with his memory deficits; 11) improved ability to discern nonverbal cues; and 12) basic problem solving skills (such as what to do if by mistake he steps onto the wrong bus). This is a partial list, of course, and includes only the bare bones. And there’s a vast different between what I want for Peter and what minimal skills I think he must obtain in order to have any chance at any semblance of an independent life. What I want for Peter is to have a fulfilling, purposeful life, where his path is chosen not as an immutable outgrowth of his disabilities but rather from the natural blossoming of his talents and desires. But if we can’t secure for him what he needs, using the vehicle of our public educational system to get there, then how can we ever hope to give him the opportunity to achieve any of his dreams? That’s what we have to focus on now and that’s the major disconnect with the school. They aren’t focused on those things at all. There are no private special education schools in our area and even if there were, we couldn’t afford them, at least not anymore. We have foolishly dwindled our savings away on lawyers, interventions, medical experts, physical moves, and private therapies. The good news is there’s nothing left to blow; the bad news is that we have no choice but to continue down this unpalatable path with the school district, which means another hearing request. But I still have to hope for the best. I still have to hope that folks at our school eventually will come to recognize Peter’s needs for what they are. That would be very welcome news. Hopefully we can convince the school, and if not, then the Hearing Officer, that Peter’s educational needs are fundamental, much more fundamental than learning about angles, compound spelling words, and the life cycle of frogs, and that his hope for success in the future absolutely depends on what he’s taught today. It’s funny how Pat and I often debate about “want” versus “need”, about “can’t” versus “won’t”, when it comes to our son and his abilities and behaviors. But now the debate’s expanded into a new arena: the school thinks we’re obsessed with what we “want” for Peter, which to them is beyond the scope of their obligation. But that’s where they’re mistaken. This dispute has nothing to do with want and everything to do with need. We don’t just want Peter to be able to stay dry, orient himself to time, or have the judgment one day to resist a buddy’s request to help him rob a convenience store, we need him to be able to do these things. His very life depends on it. And for that we’ll keep fighting, and if necessary, enduring the criticisms and even outright accusations regarding our parenting style and advocacy. The school staff are responsible for Peter one year at a time, a new group of students always at the door ready to push the old ones through. But we’re responsible for his life. We brought him from Russia, gave him our hearts and our home, and promised both our children that we would do our best by them and for them. There is no “getting through the year” for us. It’s a little like buying life insurance, something else we can no longer afford: the school is hedging its bets and buying cheap term coverage. But we’ve no choice; when it comes to our children, and this is especially true with Peter, an whole life policy is the only way to go.