Tomorrow is the first day of school. It is a day I have dreaded with all my heart all summer long. There are two reasons for this: Pynni starts Kindergarten and the last few months of second grade were hell on Earth for me and Chi (feels like mostly me, but probably mostly for Chi). My dread of Pynni going off to five full days of school is fodder for a whole other series of posts and this one is about Chi.
To recap previous experiences, starting in March of last school year (read:2010) Chi had regressed to pre-diagnoses Chi and beyond. He was almost totally nonfunctional. We had issues with everything, not the least of which was school, but he was also not functioning to any acceptable level at home so you know it was bad because home is the safe place; home is constant and predictable. We started going back to his very expensive behavioral psychiatrist specialist person and being very broke and not seeing any changes and feeling like I’m wasting my time and money and fuel. By the end of the school year Chi was relegated to the “kid who does nothing” in class and put on the computers during school hours to keep him calm. Then he was persecuted by the permanent substitute for having these issues at all and school was a living, breathing hell beast that he had to visit every day. Well, we made it through the school year by the skin of our teeth and barely held on to any sanity at home. We dropped the psychiatrist because 4 months of weekly visits had netted no results, and looked to new other therapies.
During the summer several things occurred:
My brother’s two kids come to visit their Daddy for the summer and I keep them during the day when he is at work. This makes for a very chaotic and unstructured summer because, well, five kids is a lot, yo. I was worried that the chaos would make Chi worse, but DJ is a life saver. Maybe, literally. He is Chi’s age (five weeks older exactly) but he is a whole other kind of creature. His life has not been easy and he has had to be the adult for a long time now. Instead of making him mouthy and difficult, he is responsible, receptive, respectful, all the r words. He also sees Chi as just himself and not some weirdo. He sees that Chi needs things from him and more than willingly provides that. It kills me that he lives so far away. (In fact, Chi tells everyone who asks if he is ready for school to start, “I miss DJ and my sister starts school, too.”). He was precisely what Chi needed.
We stopped seeing Chi’s OT. She said that she thought all his issues were anxiety related and not sensory. I respectfully disagree with this. I think the sensory and aspie things increase anxiety, but whatever, I’m only the mom. I decided that she could not do any more for us and we are moving to another OT. We are on a waiting list and I do not know when we will start. It will be expensive at first because they do intensive therapy: therapy every day for two or three weeks, but after that, for the older kids, therapy will scale back to once a week then every other week and can be as far apart as once every three or four months or so. I’m excited about what this place will do for Chi. They approach SPD from a whole other direction.
I had an Epiphany. Watching Caleb with Chi and realizing that I was fighting all my instinctive reactions to Chi’s meltdowns struck a chord. Chi was diagnosed in December 2008 and January 2009. Up to that point I had suspected that he had Asperger’s but felt that a diagnoses would just label him and cripple him. I had no idea there was anything like Sensory Processing Disorder, although I knew that he had severe sensory issues and we dealt with them in ways that made sense to me (I apparently have SPD as well) and worked for him. He was also a master of coping; not necessarily in ways that were functional i.e., shutting down and holing up inside his head. When he was labeled “troublemaker” in Kindergarten and his teacher said, “Oh he’s just a boy,” it made me angry because he’s not a troublemaker. He’s a rule follower and he is unlike any kid I have been around. In first grade, I had my first parent teacher conference with Mr. S and he told me that Chi refused to answer any questions (not news to me) and that he had been put in a remedial reading group all by himself because he didn’t know his ABC’s when he read everything I allowed him to read at home. Mr. S said that after the first one on one session with Chi he realized that Chi read better than the third graders and realized that Chi was unlike any kid he’d ever taught. This sounded exactly right and together we decided that it would be in Chi’s best interest to get him tested for various developmental disorders.
After his diagnoses, I started treating him differently than I ever had. I changed my expectations and lowered them so that he could meet them easily. I felt like I had done him some grave disservice by treating him like a regular kid and expecting more out of him than he would ever be capable of. I, of course, did not see it that way at all at the time. I let him chirp and stim and did not expect him to work to not have meltdowns. There were a myriad of ways that I changed how I dealt with him. Some of them are good and knowing where he is starting from helps me to understand why, still at the age of almost 9, he will fall completely apart and rage and flail at me. I am strict and I am consistent. I do what I say and when and there are predictable consequences for all actions. I took some of that away from him. I also lowered my expectations and he began living down to them. My giant epiphany is a little complicated but it goes like this. I will expect him to act as I always have. He will not throw fits. I now understand that he can not stop himself when he gets that over-wrought, but I do expect him to use the tools we’ve given him to calm himself as he senses himself getting over stimulated. I expect him to let me help him until such time as he can make these calls on his own. I expect him to do the work at school that is required of him. I expect him to follow the rules. Breaking them will lead to consequences. It has worked so far this summer and he has greatly improved from the end of the school year. Meeting my expectations will not be easy, but he will have the tools to succeed at whatever he chooses to do with his life. I will not allow myself to expect less of him because it may be harder for him to meet lofty expectations, but I will not expect things of him that are impossible.
I am mostly talking about the things you expect of neurotypical kids. He is very high functioning even for an Aspie and he can do all that I put before him if I have faith that he can and am there to support his attempts.