Executive Cognitive Function
Taking a few minutes to read all my previous blog postings let's me know Connor has come a long way this school year. It has been a tough haul, but we do feel blessed for how well the journey has gone to date. That said, he still has a long way to go.
Except for occasional days (like today!) the apprehension about going to school has been replaced with actually reporting he had a "good" day. We enjoy listening to him talk about fun times with his friends. Again, what a turnaround from this time last semester.
Our focus upon returning to school from the Homebound program has been on getting him comfortable going to school each and every day. We very purposely said it was not on magically returning him to the straight A record he has maintained up until this school year. I'm grateful to report we seem to be reaching the primary goal. And for the things we agreed to not be as worried about (i.e. his grades), well… they're OK, but they sure have a ways to go.
Truthfully, if you took out all the zeroes he has in several classes he would most likely have straight A's again. He is also rapidly loosing self-confidence in math. Taking 9th grade math in 7th grade is tough enough. Missing most of the first semester, having your teacher give up on you once you get back to school, not being very motivated, and having low confidence in your own abilities only makes it 10 times worse. Did I mention this grade actually goes on his high school transcript?
What Connor is really struggling with right now is just keeping it all together and general organization and memory skills. If you remember back in TS is more than just tics, I introduced executive cognitive function as I'm quoting again below.
Executive cognitive function includes the abilities of setting goals, monitoring one’s own progress in achieving those goals, and appreciating when the goals are reached. Children with executive cognitive dysfunction will generally be unable to meet their responsibilities and will appear totally disorganized (or as the author prefers to label it, “terminally disorganized”). Como (16) and Denckla and Reader (17) provide useful discussions of the neuropsychological testing and functioning of children with TS.
Children who have problems in executive function may have problems with the following tasks: recording homework assignments, packing necessary materials to complete homework, turning in completed assignments, initiating tasks in class, maintaining attention to tasks in class, completing tasks in a reasonable amount of time, shifting from task to task, initiating homework at home, maintaining attention to complete homework, breaking long-term assignments into manageable “chunks,” packing completed homework in the schoolbag to return to school, giving parents important notices from the teacher or school, and keeping track of possessions.3 Teachers who are dismayed by the total chaos in the child’s desk or locker may take small comfort in knowing that the child’s bedroom at home is probably even worse. Parents often lament that they can’t even find the child’s bed or desk (or floor) under all of the clutter.
This describes where we are right now with Connor. Of course, to some teachers (hey, remember my wife is a teacher so please know I'm not picking on anyone or expecting anything from them that I wouldn't want some other parent to ask of her) this all sounds like nonsense. In fact, we are still having troubles with a couple of his teachers simply letting us know about their weekly agendas so we can make sure he's making progress and staying on schedule. The level of frustration with these teachers gets dangerously close to boiling my blood sometimes. We'll continue to work with them and remind them that they are legally bound to follow his 504 accommodations.
To help bolster these accommodations and to see if we can further help Connor, we are considering getting him tested by the Pediatric Neuropsychology team at Children's Healthcare of Atlanta. They are doing some interesting work there that includes their Cognitive Remediation Program. We're at the scheduling phases of their 3-step evaluation process.
The only real negative right now is that insurance plans recently changed and they don't cover TS patients seeking neuropsychology testing. Looks like this will be a few thousand dollars out of pocket, but we will spend it if it has a chance to help him. We also clearly nead some more "firepower" to back up our 504 plan. I'll even start to investigate the Individualized Education Program (IEP) route as this seems to yield more compliance from teachers.
We are open to hear other people's opinions about, and experiences with, testing for things like executive cognitive function and neuropsychology in general. We also welcome feedback about migrating from a 504 plan to an IEP.
Again, Connor is doing SO MUCH better than he was just six months ago. We still have a bumpy road ahead, but are always focusing on being grateful and thankful for the blessings we have. We thank everyone for their continued support and are always mindful of all the other children who are facing problems of their own. God bless you all.