Against the Grain to North Carolina

April 22, 2014

Years ago, when Robert was 4 or 5 years old, he gave us, his parents and his grandmother, very hard time on a way to White Mountains in New Hampshire. He was kicking, screaming, and moving back and forth in his car seat trying to get out. Despite all these behaviors, Robert’s grandmother stated that we should stop and eat in the first restaurant we find. I was petrified. How could we go into any public place with this untamed tiny creature with loud, piercing voice and explosive energy in his little feet? The only thing to do was to go back. Go back. Go home. Hide. I protested. Well, mildly protested. And since everybody was hungry, including Robert, we went to Applebee’s anyway. To my surprise and relief, Robert behaved much better than he did in the car. Maybe he still whined, but I am not sure even of that. He certainly did not kick and he did not try to run away. He ate his food and let us eat ours. Even more, after the stop in the restaurant, he became calmer so the remaining part of the trip was much nicer. That lesson was not lost on me.
From that time on, I often went against that first impulse to return to safe cave and abandon all thoughts of venturing out.

In one of the old posts, https://krymarh.wordpress.com/2012/07/11/all-the-bubbles-in-the-world/, I wrote about going back to the store almost immediately after Robert had a major tantrum there (1997). Of course, my husband and I planned carefully a few subsequent trips to the stores. But after a few days, we were rewarded by years of pleasant shopping experiences with Robert.
In 2004, I was advised by the clinical supervisor (BCBA as she would be called today.) to consider residential placement, as a better way to address Robert’s behavior. Moreover, I was asked to consent to the next level of restrain which I understood as a sort of solitary confinement in a very small room. I have not consented. Instead, I began looking for less restrictive program. Not without a fear. I was scared of Robert leaving a place where he stayed for more than 8 years, where everybody seemed to know him. where I knew everybody. Where I knew what to expect. But then, the path that school had for Robert became narrower and narrower. I had to find a different road.
I did. Robert joined the Collaborative program that offered more possibilities, although some were thorny and in the end led to a dead end. Still, at home Robert’s behavior improved a lot. In the beginning it also improved at school. Moreover, Robert gained many skills in a very short time. The second year, however, was a different story. But that second year was completely different program. Different place, different students, different teacher’s aides, different way of presenting instruction. Only the teacher was the same. Without the supportive guidance of the previous, very experienced staff, Robert lost his compass. Robert left this school with a terrible profile written with cowardly menace. For instance, during the whole school year, Robert had three tantrums, but the profile stated that he had three tantrums EVERY WEEK. The image of Robert created by this profile is still alive and affecting Robert’s future. Based on this profile, I was, yet again, pushed toward placing Robert in the most restrictive programs. I rejected those advises. Instead, Robert ended in my town’s high school in self-contained classroom. He had three relatively good years there. In the school year 2009/2010, with the arrival of a new teacher and a new sped director the chasm opened yet again, and Robert seemed to regress with the speed of light.
It has to be said that going against the grain is not full proof and not easy. Those are not happily ever after stories. There are constant struggles. There are doubts.
But, at least in Robert’s case, those hard decisions made against almost everybody who could claim some knowledge of Robert, were necessary to foster Robert’s growth.
That is why we drove to Durham, NC, that Saturday, on April 12, just after Robert’s major meltdown. We took this trip despite the fact that Robert’s behavior deteriorated the previous week. Without consistent daily schedules (he is still without a day program), without responsibilities to fulfill, without events to predict for the next day, without meeting other people, Robert is regressing.
I expected such development and tried to prevent it, but on Thursday, April 10. as I reported in https://krymarh.wordpress.com/2014/04/11/journal-page-10/ Robert became very anxious asking for his father every minute. On Friday he was just very tense and on Saturday, Robert had a meltdown. As he does every Saturday, Robert attended 4 hours long program and at least for an hour and a half, he was making noises and slapping his own face. It resembled the nightmarish events from his last year at local high school (2009/2010). I was heart-broken. In a short time, everything he worked so hard on for years, evaporated. And again, my first reaction was to cancel the trip and return home. Go back. Go back. Go home. Hide.
I knew that Robert was responding with constantly growing anxiety to the reduced predictability of his new situation. I couldn’t help him. I was unable to find him a day program, and I wasn’t able to replace all the missing elements of his school life with new arrangements. Robert looked as if he were drifting into chaos without flashlight or compass. The trip to Durham, at first glance, appeared to be the continuation of that chaos. But that chaos was a part of a travel routines: driving, staying in hotels, visiting places, meeting people.
That is why, on that Saturday, April 12, we did not bring Robert home but instead we took Interstate 95. South.

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