Category: PDD-NOS


Chi in motion.

Ten years ago, I birthed a baby boy. He was a difficult baby, if exceptionally cute. He seemed very unhappy with his lot. He cried a lot. When he wasn’t crying he was staring out at the world through giant blue eyes that grabbed your attention and held it. At about three weeks old, he started crying every evening for hours on end. Most people told me this was colic or gas, but I didn’t buy that then and I don’t buy it now. I discovered, by sheer force of intuition, that his crying was less severe and lasted for a shorter period of time if I turned out almost all the lights, and made my apartment as silent as possible after the dinner-time feeding. I also learned that keeping his day dim and quiet helped with the nighttime crying jags.

As he got older and he developed far beyond his age, for the most part, (commando crawling by 4.5 months, pulling up by 5 months, cruising by 6 and walking by 9), he got happier. The more he was able to move the more smiles wreathed his face. When he started cruising, he would circle the room over and over and over again. Once he started walking, he always walked on his toes and would run as fast as he could. This began the day after he took his first steps out into the room. When he became more proficient at both walking and running, he would slam into things on purpose and spin and spin and spin without getting dizzy.

As he began his tactile and oral explorations, I noticed that he never touched anything with his hands first. He always touched things with his feet, played with things with his feet. I have record of this phenomenon as early as 10 weeks old.

As he got older, instead of falling less, he fell more. He would fall right out of chair at the dinner table even when sitting directly on his behind. His movement grew more, not less, awkward with time and maturation.

Whenever we would go out, he would fall into screaming fits for no reason that I could see. He wasn’t worried about not getting something he wanted, he just seemed extremely distressed. If the schedule was off by the barest fraction of a minute, he would fall apart. If something was a surprise, if plans changed last minute, if a playground wasn’t exactly as he’d expected, he would melt into a limp little ball of Chi. (This still happens today, by the way.) He isn’t a spoiled brat. He knows that no means no and I don’t do negotiations. Still, these things happen.

**note: If you see one of those parents with the screaming kid who seems much to old to be throwing a temper tantrum, consider for a moment that they may have an autistic child, or simply a child with SPD or ADhD that cannot process the sheer sensory overload that occurs at places like grocery stores and the mall**

Once he started public school things seemed to progress in a backward sort of direction almost immediately. He became uncontrollable and completely over-stimulated at all times. I had not had him assessed before public school, because I had, somehow, always figured out how to best deal with him without professional help, but school introduced a whole lot of outside influences that I had no way to control.

Fast-forward to this year. (You can read about our struggles through public school elsewhere on this blog just look under Educational Experiences in the Categories section. I’ve pretty well documented things since he was in the second grade (when things when from awful to untenable).) We started homeschooling and we’ve had our bumps along the way, but one thing stands out as a bright shiny beacon of AWESOME. Chi is better.

Chi is flourishing. He’s not cured, if there is such a thing, if I would even seek it out if there were, but he loves homeschool. He looks forward to it. He pays attention, in his way, and does the work and cooperates. We’ve been slowly working toward him doing more and more of the work himself without me having to walk him through everything, and he hasn’t balked at being asked to write more and more of the answers himself.

He is calmer. He can still meltdown unexpectedly, but it is very far between right now. We keep a schedule still and we stick to it. He knows what to expect and can even deal with things he’s not that excited about without much issue. The only time in the last few months that we’ve had major issues has been when I’ve taken him to the grocery store (or Target or mall). I’ve learned that avoiding those places unless absolutely necessary when Chi is with me is really the best course of action. It makes everyone’s lives a little bit easier.

I can’t tell you how awesome it feels to know that I made a good decision so far as Chi is concerned. I’m so glad that the investment we’ve put  into homeschool  is paying off in such big dividends. It’s priceless, really.

Sad Panda

I thought that after finding out what was up with Chi (why is he so WEIRD, anyway? Surely, not because I am, heh.) we could move into a more proactive phase of childrearing and put all of the structures and tools in place to stop regression before it started. (Although, now that I look back, I had NO CLUE that regression was going to be part and parcel of raising a child with Asperger’s.) I thought all the therapy, all the money spent, all the nifty tools purchased, all the meetings with teachers and administrators would naturally ease Chi’s way through life and make everything easy, and ooooh, I don’t know, normal.

This has not been the case. No matter how many books I read. No matter how much money we throw at it. No matter how many therapists we see. NO MATTER WHAT. Life with Asperger’s; life with SPD is REACTIVE. We remain on the defense. Our defensive line has to win by playing the game as the offense dictates it to us. Never will we dominate the offense and make them play the game OUR way. And VERY RARELY will we actually put our offense on the field. That’s not the way this thing works.

Chi’s been sliding backward a little in the last couple of weeks, and the regression has been marked in the last few days. This morning, he said not one single word of English. NOT ONE. He moaned, groaned, squeaked and chirrupped his way through the morning giving me a splitting headache, that I cannot get rid of, in the process.

We’ve been lucky this school year that the small backwards steps seem to resolve themselves in a relatively short amount of time and things continue in a more forward sort of direction. I hate to admit that I get so used to things being good, and dare I say, even normal, that when Chi starts shutting down, I flinch away at first. I try to ignore him and then, as if I’ve lost the ability to deal with these things, I completely lose it and yell. (Not screaming, as such, but I snap at him) So, as he has gradually regressed over the last couple of weeks, I’ve been having to have little talks with myself about patience and looking for the root of the problem (there seldom is one glaringly obvious one) and dealing with it in a helpful manner.

This morning, after the not talking and the absolute FAIL that was our morning pep-conversation, I was tracing Pieces’ hand and thinking. Things have changed at school. Chi isn’t dealing.

INFORMATIVE MOMENT: School this year, third grad year, has been almost entirely about taking this End of Grade (EOG) Test that kids now take EVERY YEAR once they reach the third grade. Starting early in March there are EOG camps for special needs kids. Starting early in March, the classes start taking practice tests. The individual subjects themselves are now taught in a way that aligns them more with how things are going to be worded on the EOG; how questions are going to look and therefore how they need to be answered. The content of the classes has changed. The subjects not covered in the EOG’s are being shuffled off to the side in favor of spending even more time learning, talking, working, and practicing for the EOG.

These changes are rocking Chi’s world. He is very rigid. There is no bending when it comes to his schedule or his

BUT I was gonna go to Toshi Station to pick up power converters!!!

expectations. When it is time for Math and he goes into his class and instead of the teacher explaining something new or expanding existing knowledge, the teacher plops a sheet of paper covered with 200 problems on it and says, “Do this as fast as you can…GO!” He doesn’t pick up his pencil thinking that he can be the first to complete this paper. He just stops functioning all together. He may stop hearing. He may stop speaking. He may stop using muscles to hold himself upright. He may start stimming. He may hide under his desk. He may start kicking the legs of his chair REPEATEDLY. He may chirrup or squeak uncontrollably. It can vary depending on several factors. 1) how stimulated is he? 2) is this the first time this has happened today, in this class, this week? 3) does he struggle with this subject under normal circumstances? 4) was he already out of sorts from some other surprise thrown at him?  etc. And Math? Well, Math is his favorite subject. Imagine if it were something he hated.

It burns us, Precious!

Now, I found out that he basically piled himself into a heap at school and chirrupped at Ms. Eff after I dropped him off at the door. He wouldn’t even sit in his chair. Now’s the time for reaction, I guess, since being proactive hasn’t eliminated the regression I had been working toward avoiding all year long.

**sigh**  Reactive sucks, but it’s what I’ve got. Off to contact Ms. Eff for a conference and see what we can come up with.

Catharsis

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.