Tag Archive: 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.

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**Disclaimer**  I didn’t sleep much last night so I expect major leeway in what actually gets put into this post.

**side note**  Other than minimal brain function, that has absolutely nothing to do with what I have to say.

Dimple

I had an email from Chi’s teacher Wednesday morning, early. (I don’t usually check my email before I take the kids to school because that can take more time than I have to give and we might end up being late. You know how it is.) I checked my email for reasons unknown and came across one from Mrs. Eff requesting an emergency conference and an immediate call back, which I did. We scheduled the conference for later in the day and I did a short scramble to find childcare for Pieces.

I get to the school and the conference isn’t just with Miz Eff, but also, with the PrinciPAL, Ms. A and a woman I know but have no clue what her job title is. We’ll call her EOG Admin (EOGA for short), as that seemed to be her duties in this meeting. (Ms. A is the 504 coordinator). There were some concerns that there was no way to meet all of Chi’s requirements for testing as laid out in his 504. I had talked a little about some of this with Miz Eff in March but I thought things were settled.

Here’s the score:

Chi’s 504 has some pretty specific requirements for him while taking the EOG. Things to help him cope better with a process that is likely to be very difficult for him to adjust to because it changes everything he knows to expect in school for three days only, but three crucial days. These things are (and I’m gonna use bullet points, YAY!) (in no particular order):

  • He is able to write in his test book. Meaning that he doesn’t have to fill in little circles. For a kid who hates writing and coloring, that would be tedious at best. Also, he couldn’t stay in the lines to save his own life. And that’s a fact.
  • He is to be in a group of kids of no more than 10 and no fewer than three (including himself). He does not do well at all when he is the center of any kind of attention. He does not perform. He will shut down. That is a fact. Also, if there are too many kids things get too busy and too distracting. Not good. Additionally, Chi is noisy. He is almost constantly making noise. When he is in a good mood and doing his work, they are little and quiet: hums and chirps and little squeaks, but when he is shutting down and having a bad day, they escalate in decibel level and intensity/frequency, etc. This is not a quiet kid. If he were to be too much of a distraction for the class, a mistest could be called and the whole class would have to be retested. Yeah. So not good. (oh, by the way? These noises are not something he does consciously. Yes, sometimes they are, but for the most part he has no control over them. For the record? Bringing them to his attention to makes matters worse.)
  • He is to get as many breaks as he needs, whenever he needs. Chi is remarkable at focus. When he is enjoying himself. When he is uninterested he can take a task that should take 5 minutes and stretch into hours and hours of flopping and moaning or just diving into his inner world. Plus, he has movement needs.
  • He is to wear his headphones. He has noise canceling headphones. They eliminate white noise, and most extraneous ambient and distracting noises and allow him to hear the teacher or those talking directly to him. It is like a miracle drug for his ability to cope.
  • He is to be allowed as much extra time to complete the tests as he needs. Because his focus can wander and he can have shutdowns and he may need breaks as often as every 15 or 20 minutes, he will need extra time to complete his exams.

Well, I found out in March that there was no group that met all of his requirements, which meant that he would be alone with two teachers (the proctor and the administrator)(talk about center of attention, sheesh). There was one, however, that met most if Chi could have the test read to him (just the Math portions, not the Reading portions). Since the kids have been practicing taking the EOG in class and those practice exams have been read to them problem by problem, Miz Eff thought this might be a good fit for him. After some discussion, I agreed.

Yesterday they tell me that the group that meets all the other requirements has only one other kid in it. This is a problem if that kid is sick because that would leave Chi all alone, which is why the 504 stipulates no fewer than three kids. I was told that, really, Chi could write in the test book and wear his headphones in any group, so those aren’t deal breakers, but there was no one group that fit all of the other stipulations. So we set about deciding what was most important.

There was a group that fit everything, but the breaks were scheduled every 20 minutes. Miz Eff worried that with Chi being such a proficient reader such a rigid schedule would interfere with any groove he may get into with reading and answering the subsequent questions. So I pointed out the most important parts: he will need breaks and he cannot be alone. I, then, pointed out that while I found Miz Eff’s concerns valid, that Chi does really well with a rigid schedule and that the best solution would be to tell him what that schedule was going to be and let him know what time the timer started and what time it was set to go off. I think he would do fine with that. If every thing else was met in that scenario, then things should be set to run a smooth as possible for him.

PrinciPAL was worried that if Chi was sick that he would have to make up that testing day in a one on two scenario and I assured her that, if that were to be the case, then we could deal with that when it happened. It would be hard, but I think with the right prep, he would be semi-okay. Miz Eff then asked if she could be the one to administer any make up testing and was assured that, indeed, she could. That’ll make a big difference if that is a necessary thing.

EOGA was concerned that Chi was going to be uncomfortable with his testing administrator and has been pairing him for the last couple of weeks with a woman, Ms. Title 1 to be exact, who sees Chi at no other point. Thus eliminating any stress of feeling like he’s being judged by any of his academic authority figures, but still putting him with someone familiar.

So now, I come to it. I sat in this conference room, with these Education Professionals and boggled at how thoughtful and caring they were about this one student. These women have fought for Chi along side me. There has been no fighting, no head butting, nothing but cooperation and compassion. They truly care. They see the exceptional kid before them and not his issues. They want to help him.

Things have been far from perfect this year for Pynni and Chi has had his struggles, too, but in the end these people are trying, and in the case of Miz Eff going so far beyond that it takes my breath away. I sat in this room with these people, strangers really, who were fighting for Chi, and found myself, not questioning whether or not I should homeschool, but lamenting that they wouldn’t be in my children’s lives anymore. Homeschooling still solves so many problems that we will face in the future.

But I can’t say that I’m unhappy with the adults they’ve had in their lives thus far. I can say that I’m grateful. I can say that I appreciate what they’ve done; what they do.

When I left, they, each one, told me how amazed they were with my quick response and willingness to come in to meet with them so last minute. That still, flabbergasts me. Who wouldn’t, I think, this is for my son, how could I not?

Oh yes. The system has failed. What are the statistics for illiteracy in middle school students? I don’t know but I found this when I googled “illiteracy statistics us”. What it says is that 42 million Americans cannot read at all and another 50 million read no better than a 4th or 5th grader and those numbers grow by 2.25 million every year as kids leave the school systems to become part of adult society. Those numbers are scary and I actually have a passion for teaching literacy, but that isn’t the point of this post.

My point is this:

My daughter is not one of those people nor will she be. We work with her on reading and writing and math after school every day. EVERY DAY. I was told in February that she was not going to pass Kindergarten when I knew for a fact she was at or beyond grade level in every subject. Still, I took the IRT’s advice and the PrinciPAL’s suggestions and began doing even more work with her. Then, her teacher came back to the school from her maternity leave (all is well with her baby, yay!) and was appalled at how her class had been handled in her absence.

She set about reassessing all of the kids and found that, at least in Pynni’s case, she had been miss-assessed (is that a term?) and was actually above grade level in reading and writing and at grade level in math. She told me that Pynni would most certainly move on to first grade, and might not have to go to summer school. (I’m still reeling from this. Summer school for rising first graders? Really? That just seems like overkill.) “MIGHT not?” I asked. Ms. S said that the administration felt that she would need the extra tutoring that summer school would provide even though Ms. S was not recommending it.

On Thursday, I found out that Pynni is being recommended for a P.E.P. (personalized education plan) which would be GREAT except that it is reserved for academically troubled students. Ms. S stated that she was against such a thing and that in the end it isn’t bad, but the administration is determined that Pynni is this horribly slow student whose parents are checked out and is in need of all kinds of interventions to keep her from falling behind.

I cannot express in words that don’t make me sound awful and uneducated how angry all of this makes me. I appreciate that they are trying to catch the “at risk” students before they are sent forward through the system without all the necessary tools, but Pynni isn’t one of them.

Conversely, Chi isn’t necessarily “at risk” but he needs all the help he can get. He needs academic and sensory interventions. He most likely needs an aide specifically for him in the classroom and that will increasingly be the case the further through school he gets as he accumulates subjects and teachers. But can I get many of these things without jumping through hoop after hoop after hoop? No.

Then the school tries to “help” Chi prepare for this test they’ve been hanging over his head since the beginning of the year by putting him in this before school “camp” twice a week. It turns out that it was a camp not geared toward kids with Chi’s particular needs or even with needs similar to his. It wasn’t a camp taught by a teacher with any experience either with Chi or with any other Aspies or simply Autistic kids. Said teacher was not briefed on how to handle Chi. Thanks in part to this camp, Chi almost completely regressed into the state he began the year in.

This is not the kind of “help” Chi needs. (Mrs. Eff agreed and we are pulling him out of that camp.)

Chi is smart. Ridiculously so. He astounds me with what he understands and what he knows. The kicker? He doesn’t like to write. Period. He will avoid it at all costs making it hard to judge how much he understands about what he’s reading or measure his writing ability when it comes to grammar or expository writing. He doesn’t like to answer questions. He doesn’t like to be the focus of attention. He would prefer it if you didn’t look at him directly (I mean he does YOU that favor, after all).

It takes a special person to see beyond his issues into the wonderful kid underneath. It takes a special person to recognize the wonder that is Chi’s intellect within all that refusal to write and cooperate and compromise.With this we have been blessed beyond belief, though. Chi’s teacher is truly a miracle in his life. She truly cares about him. She gets him. She is able to see issues and work to help him overcome them without diminishing him. She appreciates that his brain functions differently than most people. She sees that he has understanding beyond what he is physically able to show her.  (I know I gush about her, but even with all of that, you really have no idea just how great she is and how much I appreciate her)

The problem is that we can’t pocket her and cart her around from grade to grade and class to class for the rest of Chi’s schooling and even she is worried about his ability to succeed in the future grades. Not because he isn’t smart enough or because he’s behind, but because not everyone can work with him and see all of his facets through the coating of his Aspergers PDD-NOS and SPD. He’s a kid who could use the extra help.

Is there a way I can transfer the help for Pynni to Chi?

So I think the system is broken. Ninety-two million is a lot of people who leave school either unable to read or are barely functionally literate. Neither of my kids will fall into that category and I will not be allowing them to fall behind in other subjects either, and so I’m wondering, “How often is this extra help misplaced? How many kids, like Pynni, receive extra help they don’t need? And how many who do need the help slip through the system’s safeguards?”

Plenty apparently.

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.

Metaphorically Speaking

We get into the car to take Pieces to school and then me to the chiropractor this morning and after about five minutes we are all sweating like it’s a sauna. Hubs adjusts the temperature controls but it’s still HOT in the car. I glance behind me at the temperature controls for the rear seating, which is located between the front seats but faces the back seats. The knob is turned all the way to the highest heat setting. I adjust and Hubs comments that Chi ALWAYS turns the dial to the highest heat if he’s cold or the highest cold if he’s hot with no in between.

I point out that is actually a really good metaphor for Chi. He lives his life turned all the way up. He is either into something or doing something 200% or not at all. He is either all the way on or shut all the way off. There are no grey areas with him. It is the way he operates and it is the way he sees the world.

Somehow, even before he spoke English marginally well, I knew that Chi did not see the grey’s in life. To him, it is black or white. All of our house rules and all of my explanations for why something is a certain way have always had to be black and white. Grey’s just confuse him. He doesn’t do exceptions to the rules at all.

Huh, I may have just explained, at least one reason, why Chi hates writing/spelling/grammar so much. All those exceptions. “I before E except after C” Yeah, he’d just rather do math homework.

I’ve spent a lot of time since we began this journey with Chi and the public school system thinking about pulling him out and homeschooling. I spend a lot of time everyday making sure Chi is ready for school, prepared for whatever the day may bring, armed with whatever tools I can give him to cope, and then repairing any damage being at school each day causes.

We have days that are what I imagine days for parents of neuro-typical kids are like. That means, to me anyway, that there aren’t the usual struggles associated with regular daily occurrences like brushing teeth, or walking out the front door, or maybe riding in the car to school. Maybe, when Chi comes home, his pupils aren’t dilated until there is almost no blue visible. Maybe he has a snack and heads outside to blow off some of that pent up energy (which takes a surprisingly short amount of time since a small part of his issue is his stamina level, or lack thereof, even though I make sure he gets lots of outside time away from his beloved video games) without me having to get mean about it. Maybe sitting down to do homework or simply being told to tie his shoes won’t result in limp-noodle Chi.

Awesome kiddos

Mostly, though, I have to go through the motions to make him do the things he would rather skip and get right on with the game playing.  Is body-brushing necessary? Does he need some time spent under his weighted blanket? Do we have enough strong flavored gum or sour-something-or-other to get him through homework? Is the trampoline cleaned off so he can jump to wake himself up or get the need to move constantly out of his system? Do I need to enforce the silence-in-the-house rule to eliminate one of his biggest triggers for overstimulation and meltdown?

All of these things are tiring. And I’m exhausted. I can barely keep my eyes open some days and my temper under control others. It can be so hard to see these issues as part of a larger problem that we are constantly working on, and not just Chi being difficult.

**note** I realize that Asperger’s is not a problem to be dealt with, nor is his SPD and the trial that encompasses. Still, when dealing with a lot of these things, they feel like problems. They make life more complicated. Harder. As if childhood is not filled to the freaking BRIM of pitfalls and potholes without extra obstacles to dodge. Or scale. As the case may be.**

They can be emotionally and somehow physically wearing, but they’ve become second nature by now. (Except, you know, when I fail to explain to Chi that the Zoo in Ashboro isn’t like the Zoo in Louisville before I send him off with friends and he proceeds to completely shutdown and require carrying through the Zoo. At 60 lbs? That’s not a comfortable proposition. Sorry, Taz’s Mom and Dad!) So I feel like (now especially, that we aren’t having a period of regression) I’ve fought the hardest fights at school (so far) and we’ve gotten the principal on our side which helps get the right sorts of teacher (Thank God for Ms. Eff. **gotta think of something GREAT to get her for a thank you gift at the end of the year**) for Chi and the help and environment he needs for certain special circumstances; that I’ve laid the paving stones to make passage through the future less treacherous.So with all of that, and even with the nightmare that was Second Grade (I imagine a deep booming voice saying that like “Pigs in Space” on the Muppet Show for some reason), I had not truly considered homeschooling again.

Now there’s my sweet Pynni. She loves the kids and even loves the various substitutes, but she cries (CRIES!!!!) over her homework. She cries over having to write a story. CRIES!!!! When she writes stories on her own without it being homework, but for whatever reason, the mere fact of it being for school pushes her over the edge. She is in Kindergarten FOR CRYING OUT LOUD! And already she wilts when it’s time for homework. She doesn’t throw fits or shutdown or anything even in the near vicinity of her older brother, but two months ago, three months ago, she lit up about homework. She would ask for MORE homework.

I cannot have her doubting herself. We are working, and working hard, to bring her self-esteem back up. We are working extra hard on the things the school says she is struggling with (which I STILL don’t see evidence of). We work all evening outside of dinnertime on homework.

It’s funny, really, that with all the setbacks, and struggles with Chi; it’s Pynni that has me researching homeschooling.

I am still not saying that I am doing it for sure because Hubs isn’t entirely sold on the idea, yet. I, on the other hand, have picked the curricula I’m going to use and I’ve started planning the order in which to start and how we are going to move forward. I’m a lot excited and a little nervous, but I see the way we work together doing homework. I know that we could have a blast and they could know how smart they really are.