On the Autismfront

by Kristina Chew

category: Education

Published February 27, 2009 @ 01:39AM PT

February is the last month in the ancient Roman calendar, with March the first. March---spring---is when the farmer can return to plow his fields and plan the year's harvest (it's also, fittingly---being the month named after Mars, the god of war---when one begins military campaigns). It's been feeling spring-ish around here this past week, with a lightness in the air and the sun shining on Charlie's and my late afternoon walks. It's a welcome change: While the winter was not freezing freezing cold here in the Garden State, we got our share of snow and the wind always seems to blow down extra frigid on Glenwood Avenue as I run-walk to class.

And then, this year got off to a remarkably difficult start for our family of three, with Jim and I finding some hard hard questions---like the possibility of Charlie needing to be in a residential placement---staring us in the face. Charlie had started to really struggle back in December on our annual Christmas trip to California and this continued after we returned home to New Jersey. Things got rough, difficult, and really pretty bad, and even reached a crisis point.

Everyone---Charlie's teacher most of all, and the aides in the class, and the school district really, and the ABA consultant, and Charlie's neurologist, and Jim and me for sure---and, after a lot of what I'll just call worry, agonizing, and sorrow of the soul-searching kind, changes and a new protocol have been put into place. There's been the inevitable adjustments and bumps---Charlie tends to take to a new program quickly, and then squirm and falter as he gets further into it. Home visits from Charlie's teacher have been highly helpful and we've been feeling that the lines of communication are clear and open, and that honesty and doing the best by Charlie is truly everyone's modus operandi. We've been feeling extra-grateful that, this time, our school district has stepped up to provide Charlie with what he needs at a time of budget crisis and when parents elsewhere in the US, in Michigan, are seeking to file a class action lawsuit against Blue Cross-Blue Shield for ABA therapy for their children. Families in Maryland and Oklahoma are seeking legislation to have insurance companies cover autism treatment.

February's seen some momentous news on the autismfront, from the announcement of manipulated data in Dr. Andrew Wakefield's 1998 study, to the Special Masters' rulings against three families---the Cedillos, the Hazlehursts, and the Snyders---who were seeking compensation from the National Vaccine Injury Compensation Program (NVICP). It's also been quite a momentous month here in our household: On Wednesday, Jim mailed in the corrected manuscript for his book about the New Jersey/New York port. It's about the "Irish waterfront" and Fr. John Corridan, the Jesuit priest who championed the rights of the longshoremen who worked under unfair (understatement) labor conditions in the first part of the 20th century.

And Jim's book is about the 1954 movie On the Waterfront, in which Marlon Brando plays a coulda-been boxer/longshoreman, Terry Malloy, and Karl Malden is Fr. Pete Barry, a character inspired by Fr. John Corridan. For the past ten or so years, Jim's been in libraries and archives and working through boxes and boxes and boxes of xeroxed documents and testimony from the Waterfront Crime Commission and walking on the piers on the west side to piece together the story of the waterfront priest. In the year that Charlie began ABA therapy in our second-story duplex in St. Paul, Jim was on a sabbatical and between opening the door for the therapists and taking care of Charlie, he worked on the beginnings of his book in a small wedge-shaped room.

Taking care of Charlie having been the main focus of our lives for these past years, Jim's book has often had to be put it aside. Even though the book is not about anything I write about here, in many ways it feels that it is very much about this past decade of Jim's and Charlie's and my life together---that the story of the Irish waterfront has been a huge part of our story. Times have been tough, though there's been plenty of good and joy, and love in bucketsfull. There's been many moves in the constant effort to find the right school for Charlie (which we seem to have found, for the time being), and strain and anxiety and long nights and sorrowful days. There's never not been struggle and we have been beset. Life on the autismfront has been the real thing, and Hollywood endings are not expected.

But things have been looking up on the docks around here. I've got my senses attuned for the small signs of spring, for newer colors to spot on the trees and in the grass as Charlie and I take our walks, for a softer feel to the wind blowing on us off the Hudson River. Februa is Latin for "expiation," for purging and purifying and who knows but maybe that has been what was going on this past month. One thing's for sure: Through this past period of adversity, and over a decade plus, we've stayed a tight team of three, more and more aware of how much we're like each other, of what brings us together. We've stuck it out and we're sticking with each other.

Yes, things are looking up.