Bad Behaviors and ABA interventions and coping with sensory intergration difficulties

For over 3 years, I struggled (and still struggle somewhat) with the question of was this part of his disability (not being able physiologically to moderate his own emotions and behaviors, or was it manipulative behaviors?) Even the specialists can't give me a definitive answer and stick to it. One visit, the neurologist would tell me that he was having partial complex kind of spiking activity in the temporal and frontal lobes on his EEG which are the areas ofthe brain that control behavior (frontal lobe ) That part of the brain was also damaged. The very next visit, (a couple of weeks later)he said to me that it was his opinion my son had autism. His thoughts were "it doesn't matter where the behaviors are stemming from, i.e. diet, genetics, C.P., epilepsy or some unknown etiology, the results were the same...autism) The PDD diagnosis had been brought up in the past and it was diagnosed early on but only secondary to C.P. Whatever that meant. But then, I had multiple other specialists tell me he DID NOT have that, it was a direct result of HIE. The neurologist mentioned to me that there is a higher incidence of Autism with children with Epilepsy in addition to a higher incidenceof children with Autism with C.P. I have since been able to substantiate the epilepsy/autism claim. But anyway, I just went wayoff on a major ramble. With David, he doesn't tolerate change well at all. So, whenever thes chool year changes, teachers move, we take a different route home, therapists move on, his transition is strained to put it mildly. When he turned 3, I realized he needed intensive intervention to be able to pull it together to get anything out of his therapies. I amsure his PT/OT/andSLP all had to take a Valium after his sessions. I put him in ABA therapy program. Not as intense as Discrete Trials butthe same idea. 2 hours per week at first. We noticed some response to the therapy but not nearly as much as we would have hoped. At one point, we reached 10 hours (one on one with a behavior therapist)per week which did show the greatest results (but it was too cost prohibitive to continue indefinitely) David really responded very well to Very consistent, very black/white reward systems. He did best working one on one, for a food reward, or the chance to play with his favorite toy for 2 minutes. Requests were broken down in order to be measured into very small increments. When he would have a tantrum,one intervention was to count to 10 out loud. When he could keep it together until I reached 10, then he could come out of the time out chair. I believe he learned by rote memory how to count to 10 that way. Repetition, Repetition and more repetition. the ABA therapists would use alot of "modeling" or "teaching" what an appropriate response would be. If David would turn his back and tantrum becausewe asked him a question, I would get down eye to eye and say something like "this is not how we act. When we are told to put a toy away, this is what we do...then we would model the behavior (and say what it was that we were doing...we are now standing up, we are now going to walk to the bookshelf, etc.." this is what worked best for David. I am really simplifying things here. He was in ABA therapy prior to having been diagnosed wtih Epilepsy, btw. A year into this intensive therapy I pulled him out because he was able to maintain appropriate behaviors in school and other settings. Now, last year he started Kindergarten. The summer before he had a breakthru seizure (lost consciousness and convulsed) while on theTrileptal. Up until that point, we were only treating the EEG, not any visible, known, witnessed or suspected seizures. Anyway,We increased his dose, and started noticeing increased behavioral issues(not sensory, but behavioral) but it was in conjunction with other outside stressors. By the time Kindergarten started, he was not doing well. I was called to the school about 3 times per week. IEP meetings, Staffing meetings, you name it. Because of physiological side effects(g/i disturbances) from the increased Trileptal, I decided to try changing his meds to Keppra. His teachers, aides, the counselors, psychologists, principal CAN"T believe it. He is a completely different child. He had a tendency to drop to the floor, roll around kicking, screaming and flailing without any known or specific triggers, several times a day for up to 30 minutes each time. Very disruptive to an academic setting. There isn't any way we knew for sure or could rule out seizures because he wasn't monitored on an EEG machine at school, but the 2 psychologists after witnessing these outbursts were both in agreement they weren't seizures. Anyway, We are going on 6weeks without any calls from school. So, maybe we have hit the right medicine, the right dose. He may have developed Epilepsy a long time before, but was never diagnosed. Too hard to speculate. About the sensory stuff. The behavioral therapists told me how to ease him into things. First off, never expect to actually sit thru an entire meal at a restaurant, sit thru an entire movie, or complete any task to entirety. My son's expressive language was severly limited, but his receptive is very good. It really helped if I would tell David what to expect from a new situation before we went, explained to him if we were going to go on a different route becauseI had to stop and get gas (whatever it was). If we had to dosomething that I wasn't sure what to expect, his negative reactionswere tremendously exagerrated.If we were in a situatin that was overly stimulating and disturbingto him, I found that it helped to bear hug him very tightly. If possible, I would sit with him with his arms crossed in front of him with my arms holding him and his arms tightly and firmly in place with my legs keeping his legs from kicking so that he couldn't punch me or kick me. I would then very calmly and softly explain to him that he was safe, what was happening etc. I know that my personal trainer thought I was a victim of domestic violence from all of thebruises I had. That extra sensory input seemed to allow him to process a bit more effectively. It calmed him down within minutes most of the time. His OT has him wear a weighted vest in school which seems to help also. Believe it or not, Cranio Sacral therapy seemed to really help with sensory integration. When we are in the pool a great exercise I learned from Aquatic therapy ws to have him float on his back(obviously) and keep his body as straight as he could. I would cradlehis head in my left hand, and with my right arm try to stabilize his body with the least amount of support while maintaining safe practices. The goal was to work up to barely touching him as he floated. But I would also guide him thru the water backwards or Iwould have his body circle around mine. Sorry if it is too hard to visualize. We also got a mini jogging trampoline (big lots for $25)with a handle which helps him with balance and sensory integration.