I have a confession to make. I’m hoping that by just putting it out there, I can feel absolved. Maybe if I just SAY it, I can stop feeling shiesty and maybe fake. The feelings are large and complicated and I’ve been studiously ignoring them. Well, the time to confront is nigh and what better place to do this than HERE IN FRONT OF THE WHOLE WORLD (potentially).
**Apparently this is going to be very hard for me to say. I have started this post over and over. I have cut and pasted my words from this post into other posts because I find myself rambling on and on about related sub-topics, but not actually confronting the issue at hand.**
I AM ANGRY.
When we had Chi tested, he tested low for Asperger’s. One would think, “Great! He isn’t autistic! PARTAY!” Well. One would think.
Chi tested in the bottom three percent. To simplify what is a more complicated explanation, assume that the test measures from 1 to 100 and if you score 70 or above you have Asperger’s. Chi scored 75. His very nice and very conservative psychologist did not think that was far enough into the spectrum to be diagnosed with Asperger’s. He told me that what Chi has, officially, is PDD-NOS or “pervasive developmental disorder-not otherwise specified”. Kids that exhibit some of the hallmarks of autism, but not all are placed under this umbrella.
It is an umbrella that is not recognized by the school system (in NC, anyway) as an official developmental disorder and the child diagnosed as such is not eligible for an IEP (individual education plan) or a Section 504 (special consideration in the classroom and during testing). Chi most definitely needed one of those two interventions to help him function in the classroom.
During the time that Chi was assessed for Asperger’s, he was also tested for ADHD. To be diagnosed with ADHD, one must meet 6 of 9 criteria in every situation. Chi met 5 of them while at school, but only 2 at home. Dr. G decided that he would diagnose him with ADHD: inattentive type which would allow Chi to get a 504 without any fighting, and if we felt like pushing the issue, an IEP as a long shot. Then. THEN! Dr. G proceeded to treat Chi for ADHD.
During all of that, we had Chi assessed by an OT and discovered (as I had long known) that Chi has pretty bad auditory and visual sensitivities. He also has proprioceptive and vestibular sensitivities, and some tactile issues. He is very sensitive to olfactory stimuli, but it tends toward positive reactions and soothing effects. His OT, in her assessment, pointed out that treatment for SPD can be beneficial for Asperger’s and Inattentive Type ADHD.
We chose to go with the sensory diet instead of drugs because I felt that Chi had been given this ADHD diagnoses to game the system, as it were, and I was most interested in providing Chi with whatever tools and strategies I could to help him cope and function in a world that is not designed to be navigable by non-neurotypical people without changing who he is. I was (and remain) worried that drugs would alter his reality too much. (It must be noted here, that if drugs are required, I will not deny him something that will help)
Of one thing I’m am absolutely certain. Chi has SPD. The sensory diet that we have him on has changed the game. He is better able to cope with things that would otherwise throw him over the edge and lodge him squarely inside his own head. I believe, based on my own research and the outcome of the tests Chi completed with Dr.G, that Chi has Asperger’s. Yes, he is relatively mild when compared to some, but spend a day with this kid and you will be convinced, too. I do not believe that he has ADHD. By the Doc’s own tests and the criteria surrounding such a diagnoses, Chi’s issues vary too wildly from situation to situation.
So. Back to the angry.
A diagnoses of ADHD makes everyone think that Chi should be medicated. And by everyone, I mean SCHOOL OFFICIALS. They can’t require me to medicate him, yet (although that’s probably not too far off. And THAT is a whole other post). But the questions they ask during the 504 meetings make me feel like I am somehow failing Chi and the school by continuing to allow him to exist without some sort of drug intervention.
A diagnoses of Asperger’s would throw all kinds of state programs at Chi. Many of them he wouldn’t need because he is high functioning enough to be able to deal with many things more autistic kids cannot, but an IEP could require for Chi to have a dedicated professional in the classroom specifically to help him and meet his needs. Something that might have helped avoid the catastrophe that was the end of his second grade year and the root of the major issues we’ve had to overcome this year. A parapro would have been the constant Chi needed to deal with the stress and anxiety caused by his teacher leaving for the rest of the year and a new, completely ineffective and clueless substitute, rearranging his schedule and making every single minute of every single day a minefield of unknowns. (wow, more anger for this still under the surface, I guess)
I feel like I cannot seek professional help for dealing with Asperger’s because according to a professional, Chi isn’t Aspie enough. He isn’t really dealing with ADHD, either, and SPD and PDD-NOS aren’t recognized by the state for IEP eligibility. Do I WANT Chi to have to deal with Aspergers? NO. Life would be much simpler if he didn’t, but it seems infinitely more complicated to almost have something that very much effects your day to day, minute to minute. I know I could get him assessed by someone else. I cringe at the thought. They are terribly time consuming. They are expensive. I SHOULDN’T HAVE TO.
For now, Chi is getting what he needs from his 504 and a really remarkable teacher. I am already stressed about the quality of the middle school our node is assigned to. I cringe away, mentally, when I think about everything I will have to do when he changes schools. I worry that not having an IEP will, then, come around to bite me in the ass.
I will be as vigilant as possible against a repeat of the circumstances that caused Chi do digress so horribly last year, but I fear that many more fights and possibly a second opinion are on the horizon.