Tuesday, December 27, 2011

Neurofeedback-Part One

The results of the qEEG were exactly what we suspected. Perrin has clinical ADHD which showed on the tests as a large red "hot" spot in his frontal lobe. There was also activity in the left brain, which is where speech/language is located, and in the area that controls movement (his tics and hyperactivity). Based on these results, Ann knew exactly where to place the electrodes during his sessions to target those specific areas with the main objective being to improve attention, focus, impulse control, speech, and even reading comprehension.
Perrin has had 6 neurofeedback sessions now. It is going really well so far, and he actually enjoys going. When he comes in, he's hooked up to a few electrodes, they pop in Scooby Doo, and he watches for 20 minutes. At first I thought he'd become frustrated when the screen faded out, but he's been really cool about it. Sheena, the administrator, explained to him that when his brain is running at the proper speed, he'll see the movie, and when his brain slows down or speeds up a little, it fades. She did a very good job explaining what to expect and how it works to him in a way that he understood. He asked her that first day if it was going to take away his tics, and she was very honest in saying that it might, but that what they were going to help with was his focus, but that it also may help with his tics a little bit. Our hope is that it will help enough with the attention and impulsivity that we can either lower his dosage of stimulants or take him off entirely, which in turn will decrease his tics.
We were told that we'd likely not see any significant changes until around the 15-20th sessions, so we're just biding our time until then. In the meantime, he's enjoying watching his videos and letting his brain do its thing.

Monday, December 19, 2011

When the schools fail

After four years of constant battles for supports, gruelling two hour IEP meetings, and weekly notes about negative behaviors, we have finally made the decision to withdraw Perrin from the public school and try homeschooling. I have grown more and more convinced that our public school is neither equipped nor has the desire to adequately support a child with Tourette's. I have held their hands step by step through all of this, going so far as calling and arranging a representative from the local TSA chapter to come in and do an inservice for the staff. I have scheduled meetings to discuss efficient disciplinary tactics that work, only to have them forgotten in the moment and replaced by public shaming into obedience. I have spent over a thousand dollars hiring an educational advocate to attend meetings where nothing is resolved, and we are repeatedly told we know nothing and have no say in our son's education.
It all started in kindergarten when, due to Perrin's intense sensory defensiveness and attention issues, the school felt he wouldn't function well in a general ed classroom filled with 25 other hyper five year olds. Since our district does not have any middle ground between gen ed and full-time special ed for a child with a disability that is not autism, we had to pressure the district into allowing us to  place Perrin in a PACE classroom, where he was in a small class with 5 other students with developmental disabilities. It was not the proper placement for him, as he does not have a cognitive disability and was intellectually capable of following standard curriculum, but we had no other option. We were told we could either put him in there or throw him into gen ed and "hope for the best." That year, his teacher was fresh out of college, and I do not believe she was prepared to educate a child with Perrin's disability. She tried her best, but halfway through the year, he was being locked in closets, restrained by 3 staff members at a time, and barely making it through the day. He left kindergarten not even knowing the alphabet. They kept him in PACE the next year, with the same teacher. He loved her, and she was perky and bubbly with an enthusiastic attitude. He was also on a hardcore antipsychotic at age 5, and medicated into compliance. They were now afraid to challenge him and push him beyond his comfort zone, so he was not taught to read. By the time we were blindsided at his IEP meeting in January with their assessment that he was ready for "mainstreaming," he still barely knew the alphabet, knew only about 20 sight words, and could only count to 20. This is far below grade level, yet they were certain they could accomodate him without him being excluded.
The student services coordinator at his homeschool sat in this meeting and told me that Perrin's OT and ST would be "push in," meaning the therapists would work with him in the classroom. I was also told that the special ed teacher would be "push in" as well. They wanted to have him in the new school after spring break.  All of the promises fell through, and all of his services were to be "pull out." His new "mainstream" education would be less inclusive than the PACE program had become by the time we did the move. I regret this decision to this day. He was not ready to leave, and since he is still a full grade level behind his peers, he is not included in any of their curriculum. He spends less than four hours a week in gen ed, and he is isolated by the gap in learning. He becomes so overwhelmed by the social chaos of recess that he gets into fights when the other kids chase him, and we have yet to get even a cursory story of any of these incidents other than the method of punishment Perrin is to receive that day.
All of this boils down to environment and resources. The general ed environment is loud, bright,chaotic, and not suitable for a child who feels everything so much more intensely than other kids. Despite even the very best efforts of a very overworked special ed teacher, he has little hope of catching up to his peers in such a competitive, test-based school. He's an easy target for bullies and already feels the isolation and disappointment from his team. It is time to shake things up. It's time for someone to take over who understands what goes on his mind and body. Someone who can provide the compassion and teaching style that he can handle in an environment where he feels safe and secure. So, until my best friend builds that commune we've been dreaming of since high school, I'll be teaching Perrin at home. Wish me luck. It will be quite an adventure for us both.