The Start of 3rd Grade

MJ was entering 3rd grade and would have a new teacher, so the first week of school I emailed his teacher asking if I could meet with her to discuss his Asperger's and kind of give her a "guideline" to working with him. She emailed back and set up a meeting on the Friday of the first week of school.

Before this day the school had a "Back to School" night where you can go and meet the teacher and they usually give you handouts and explain class policy and curriculum. It was here that I found out some interesting things she demanded of her students.

Now during the summer MJ had been assigned to practice these timed math tests called 36's. This is where they have 36 math problems that they must complete before a minute and 30 seconds. When we worked with him during the summer, he never finished any of them. I tried them and finished OK, but my husband, the computer programmer barely did. I figured it was no big deal that MJ wasn't finishing them, that is was just to get them to go faster, but when I went to the Back to School night, I found out that she required these to be done in a pass or fail.

Now, when I heard this, I immediately raised my hand and told his teacher that I didn't agree with it and why must they be timed---if they knew the math, wasn't that good enough? I told her how we had timed myself and my husband, and if he, a computer programmer, could BARELY finish them, then how did she expect an 8 year old boy to? She proceeded to tell me how it wasn't that bad and that they work on them for a long time and eventually everyone passes them off. I held off and told her I would discuss more of this with her when we met on the following Friday.

Friday came and I was ready. I got on the internet and printed out a copy of the Oasis Guide for Teachers for teaching kids with Asperger's. It is a great resource and great to give to teachers. you can find it here. I went through it and highlighted the things that more pertained to MJ, and I wrote little add ons and suggestions, as well as writing a list of things very particular to him and how she could handle it.

I thought I had a pretty good resource and guideline/outline sheet for her and it would help her and MJ alot. When I met with her I proceeded to tell her how he was pretty much an average kid, but there were a lot of differences that might cause him problems.

I explained about how he had to be cued for almost everything. I explained how he had problems with transitions. I explained how you had to be extremely literal. I asked her if she had noticed the way he walked or the little jerks and hops he did. She said she had picked up on that from day 1. I explained to her what they meant and how to read MJ in a sort. We discussed his terrible handwriting and spurts and repetitions in his speech. (She would ask a last opinion from the speech therapist that worked with him the previous years if she wanted to continue that.) And then, I began to explain his processing delay and asked her how was he to do these 36's?

She said she would work with him a lot and take him aside, and even have him pass them off orally. But here I am thinking what difference is that going to make because his processing is delayed from brain to mouth or brain to writing. It's not like it's going to be faster orally. I didn't say anything toward that, but I figured I would wait and see, and hopefully something would be worked out.

Mostly the meeting went well, and she seemed very helpful and accepting of MJ's differences, and I was glad she was so open as far as communicating with us.

Things seemed alright, at least the first couple of weeks, but then they began to change and we would soon see an up and down rollercoaster of events to follow.

Once we had thought he had "grown out of" this Asperger's stuff, and maybe he had adjusted or matured, but we would soon learn we were mistaken.

Processing Delay

One of the most difficult thing I seem to face with both my son and my husband is the amount of time it takes them to answer a question. Now, I don't know if this is truly an Asperger's thing or not, but they both have this sort of delay before they can formulate their words to answer a question.

I'm sorry, I must be the most impatient person in the world, but it drives me crazy when I really want to know something and they can't spit the answer out as fast as I want it.

With MJ, it may be something involved with his auditory processing that they tested out, but I'm not sure. Whenever he is asked a question, he may immediately know the answer and react even to raise his hand, but when he is called on to answer nothing comes out. It's as if he knows it but it takes a little longer for his brain to organize the information into words.

We have had a difficult time watching teachers call on him only to assume he didn't really know the answer and then go onto the next student. It is frustrating to see people ask him things and then just assume he is dumb when he doesn't answer right off.

Part of the problem is the way his mind works---it can't be interrupted. Like if you ask him something (and then it takes a bit before he can get it out) but then since you aren't getting an answer you start to say something else, or ask him again, or reword the question, then it messes him all up and he has to start processing all over again. So for super impatient me, I have to seriously hold myself down and bite my lip from trying to coax an answer out of him.

My husband, who clearly understands all this somehow, keeps telling me to be quiet and be more patient and wait for the answer. Now, really, I'm not all that impatient, it's just hard when something bad happened or something is wrong and I can't get the answer out of him. Like if he's upset he can't tell me why quick enough, or if something important just happened he can't produce the information fast enough. I just go crazy!

Besides my insanity, there really has been difficulties that this delay was causing, and some really big ones were about to come. MJ was entering 3rd grade now with a brand new teacher, and we were soon to find out that some teachers only care about how fast you can get things done.

Nods, Hops, and Jerks

Have you ever seen the show on ABC called Boston Legal? It's a rather interesting show about a group of lawyers that all have different personalities and quirks. One in particular is a lawyer who has Asperger's named Jerry. Now, he doesn't have it in real life, but he plays the role pretty well I think. I'm sure it's a bit exaggerated, but it all plays out to see how someone can truly be successful in life even if it means making certain adjustments.

Why I bring this up, is if you have ever watched the show, the character Jerry has all these little quirks about him. One thing in particular is that he always has his hands plastered to his legs, even when he walks. Now, I've never seen anyone with Asperger's do that, but it's the other things that opened my eyes a bit when I started noticing things MJ was doing.

On the show, Jerry makes little sounds or grunts in reaction to things, and often he'll do a little head jerk or a full out hop to show his approval for something. Now, I've always watched this show and just thought he was cute and funny, and I loved to see how the world could get used to a guy that didn't play by the same social rules as everyone else.

Anyway, I started noticing little things that MJ was doing throughout the day that was a little "different". MJ has a lot of problems as far as communication. It takes him a little bit longer to process things, or get his thoughts in order before he answers a question. Also, sometimes it all comes out in jumbled spurts because he has so much he wants to say but his mind can't organize it in time with his mouth. I started seeing when I'd ask MJ a question and he was going to respond approvingly, that before he could make the words work, he would do this little nod or jerk of his head. Often too, he would almost do this little hop in his chair.

He would do this all the time, little hops, nods, and jerks I call them. I found that I could communicate a lot faster with MJ by reading his body language through these nods, hops, and jerks, than to wait for an actual verbal answer.

Interestingly enough, when we met with the teacher starting his 3rd grade year at the end of the first week, she had already picked up on him doing this, although I had to explain to her what it meant.

I don't know if all Aspies have these little things they do. I know they are not a "tic" as some kids can get, because it is not something uncontrollable or like an eye twitch or something else that is habit forming. It is like this is a part of MJ.

I know some Aspies display different physical actions a little differently than an average kid would do. MJ tends to wave his arms around a little too much when listening to music or watching something intense. As always, I talked about how MJ walks around on the tips of his toes. And doesn't walk smoothly, it's always kind of with a spring in his step.

My husband has always done this sort of stress relieving thing I'm guessing where he's spasticly exploding his fingers out of a balled up position and I know that is not normal, but I still love him.

There are all kinds of little things here and there, and it has never really been a big deal. Only recently have people started to come up and ask me "oh, does he do that because of his Asperger's?" And that is always a weird question for a person to ask someone. But I suppose as he's growing older, his differences are becoming more pronounced.

The Need for Sensory Overload (or underload)

I've talked before about Sensory Integration Disorder and how before we had the diagnosis for Asperger's, that this is what they thought MJ had.

I find this as a large part of Asperger's. There is this need for some sort of over stimulus in sensory, or maybe there is the need to not have it at all. What I mean in this is that maybe a person might need to be moving all the time or touching and feeling, but then another person with Asperger's might be someone who hates touching or spinning or jumping.

With MJ, he always seemed to be spinning. Jumping, dancing and spinning, he had to be moving all the time. He didn't like to sit still. Along with his spinning and toe walking, it didn't surprise me when one day he came to me and asked if he could take ballet classes. He already didn't like any sports, and so I thought this would be something fun as an extracurricular activity that he could do.

Not just the spinning and moving, but another thing we always noticed with MJ was his lack of personal space. He was always overly groping people I thought. Now, I don't mean this in an ugly way, but he just would be a little too grabby or huggy snuggly up with people. Surprised? Most people who think Asperger's think anti social and don't like to be touched, but really it still breaks down to the not understanding social rules or norms so to say. MJ would sit too close to people, hang on them, snuggle up to them, and always talk to them right up to their face.

This has caused a lot of problems when it came to school or church. He didn't understand or maybe he didn't realize how close he was getting to people. Once at school another boy punched him in the stomach for getting in his space. It's nice for a boy to be loving and snuggly, but it's not great in any given situation. You probably shouldn't be snuggling on up with your new church teacher or whoever strange person you come across.

Now, as far as underload, or the need to not touch or feel---this comes across all sorts of ways. The whole walking on toes things was pinpointed to the sensory need to not have his heels touch the ground. Or what about the way clothes scratch and poke? As an NT, I don't seem to have that much problem wearing something a little scratchy or whatever, but give a stiff shirt to an Aspie and they will just about freak out. I find this more with my husband who thinks he is going to die sitting through a church meeting in a button up shirt.

Or, what about the need to not have people touch you? I am very lucky that my husband is not an Aspie that hates to touch or be touched as far as in a relationship, but at the same time he says that he can't stand to be sitting in a group in a small setting where his knee might possibly touch someone elses. It about kills him trying to focus on not moving his legs or feet in the chance he might touch another person.

We work with MJ as far as his sensory issues by letting him be in dance and spinning away, and then trying to teach him about personal space and when it's OK to hug someone or not. Everyday is a teaching day as far as "what should you do in this situation".

Loudness and Social Behavioral Differences

Funny to put a picture of a clown on this blog post, being that most often Asperger's might affect a person into being more quiet, more hidden, or reserved than another, but sometimes an Aspie might appear totally opposite. It's rather someone with Asperger's just doesn't fit into the normal socially accepted patterns or rules during every day happenings.

With MJ, it was often that he was robotic in the way he reacted socially. Yes, he would talk to people, or respond, or give hugs when instructed or what not, but we noticed that it was different than that of the other kids.

I think I first started to really notice it when he was in Kindergarten. I watched when all the kids would leave for the day that they would all high five the teacher or hug her and say bye, but MJ was like a drone. He would walk like in a trance right through the door and the teacher would be putting her hand out or waiting for a hug and he wouldn't even realize it. I would tell him, "hey, your teacher is saying bye, or say bye, MJ," and then he might make a movement to respond, but it was very unnatural.

I noticed again when at a house of another boy his same age watching the way this boy and his mom talked with each other. It was a shocking experience to see such a difference in the way they communicated and how reserved MJ was and how little I could get from him. MJ's communcation came out in spurts and jumbles and it was tough to follow a conversation with him. He would often start a subject then change subjects so fast that I usually had no idea what he was talking about and it was very hard to follow. Plus, he was too quiet or mumbled a lot, and it was difficult to understand.

When talking back and forth with another person, I would usually have to verbally instruct MJ to repond or that he needed to go say goodbye or hello or thank you to this person. He would always do things, but it was only by instruction. He didn't seem to know how to respond back and forth as if he didn't understand the social norms.

Then again, and why I have put the picture of the clown up there, often times MJ would be totally opposite. He is the loud one, a little too loud in social groups sometimes. Like during a game or movie, he'll be the one laughing with this bellowing loud laugh, or if someone is telling a joke he is laughing a little too loud, a little too long, or often it is as if at the wrong moment.

I actually get a kick out of it. I think it makes him one of those funny good going guys that his friends will remember always had a good laugh at things, or they could always remember him laughing. Then again, it does kind of disrupt things sometimes and cause problems especially when it is at the wrong moments.

My husband does often the same thing as far as the loud laughing. Well, maybe it's just that he will start hysterically laughing at any random commercial. I guess I have never really been around people that just laugh out loud to commercials, but he sure does. It makes me smile though.

Anyway, we have been working with MJ as to when or what he is supposed to do or say when in different situations. I guess it also takes into affect the problems he has misunderstanding sarcasm or phrases people say that have different meaning. I'm always sure to teach him what things mean when it is something new, and I'm trying to help him be polite and socially knowledgeable, and hopefully be able to respond and react as any other person later in life.

I must add that just because he is being instructed to say hello, goodbye, hug, talk, show thanks, etc, does not mean that he doesn't appreciate these things himself or not want to. It is just that he doesn't realize the appropriate times or when to do them.

Being Literal--Say What You Really Mean

From the time MJ was little, he was always so literal about everything. I'd say, "Put on your shoes." And he'd say, "They're not shoes, Mommy, they're sandals." Or I'd say, "Get your coat on." And he'd say, "It's not a coat, it's a jacket."

Sometimes it would drive me crazy because I would shout at him, "You know what I mean, just do it!" But really, as it came to be, he didn't know what I meant, and as the years went by and I learned more about Asperger's, I realized that he didn't understand all sorts of things unless I spoke in exact literal terms.

As a person with Asperger's, they don't understand the hidden meaning behind things said, or they don't understand sarcasm or even funny phrases than seem understandable to others.

For instance, I once told MJ that his aunt "lost her voice" and he was horrified. I had to explain what I meant. Another time someone said "that girl was smokin' hot" and I had to explain that she wasn't on fire, but that they thought she was cute.

As far as understanding the hidden meaning, this is the toughest one. When in first grade, I met with the teacher for the first parent/teacher conference and she showed me how MJ was failing excellerated reading because he hadn't taken any tests. She said every time they finished a book they were supposed to take a test on the computer, but MJ wasn't doing this, he was just reading another book one right after another. She said when she asked him why he hadn't taken any tests that he said he was just excited to read the next book. And so he continued to not take tests.

This is when I really was awakened to how much I needed to be super exact with MJ. He didn't understand the teacher's "why haven't you taken any tests?" question to mean anything but "why", when the real meaning the teacher meant for him was "you need to take a test now, and after every book you finish reading".

I had to explain to the teacher that she had to tell him exactly what she wanted from him and not ask questions to mean something he needs to do.

It's like with most kids you could say something like "gee, I wish somebody would help me clean up" or "maybe if you wanted to be nice you would play with your sister" and they would understand to help you clean up or play with their sister, but for an Asperger kid, they don't see any hidden meaning, they just hear you talking to yourself or making a comment that doesn't really affect them personally.

We learned that if we wanted something done that we had to directly and specifically tell MJ what it was that we wanted. Never ask rhetorical questions, and never assume that he knows what is expected of him unless you have directly explained it to him. Telling an Aspie child something like "Now, remember we are in the library now, or remember we are at church now" will do nothing for them to understand the real meaning of "You need to be quiet now." You must just say what you really mean.

And really, wouldn't life be a lot easier if we all just said what we really meant without this beating around the bush thing? Let's just get to the point!

The Need to be Cued

2nd Grade went by without hardly any struggles (probably because of the great works of his teacher who knew him well by now) except for a couple major things---not remembering things and having accidents at school.

Now, what do I mean by this? Well, one big part of MJ's Asperger's is the inability to do things on his own unless he has been cued. This affected almost everything in his life from getting dressed, eating, doing homework, remembering to take his work home, right down to the very basic in knowing when to go the bathroom.

We had a lot of problems in 1st grade where I would pick him up from school and he would be wet. I would worry first most that his classmates had noticed and that he would be made fun of, but luckily he always seemed to have accidents at the very end of the day when he was leaving the last class or getting coats and things ready to go. I felt bad that I'm sure the computer lab teacher was always having a wet chair to clean up, and well, it just wasn't good all around.

In first grade, I had met with the teacher and explained that she must tell MJ to go to the bathroom at least one time after lunch. I remember she was defensive at first like I was accusing her of not allowing MJ to go, but I had to explain the whole thing with him and how she couldn't "ask" him to go, or "give him the opportunity" to go, but she must literally say "go now". Don't give him an option. He must go. I figured as long as he always went the bathroom one time at school, he would be fine until time to come home.

MJ has always been potty trained, it is just that he gets so involved in things or superfocused that he won't even realize the need to go the bathroom until it's at the point of no return. He doesn't even think of going until it's too late. And usually, in a school setting, the bathroom isn't just in the next room like at home---it's down the hall and too far in an extreme emergency to make it.

So this is what it came to. It worked well for the rest of 1st grade. 2nd grade came and I think his teacher stopped telling him to go, and he had a few accidents, not terrible, but it was still a problem. We needed to figure out a way he could cue himself.

And this cuing thing applied to everything. In Kindergarten I used to put a large piece of duck tape across his shirt to remind him to turn assignments in. Yes, it must have looked pretty funny, but it was the only thing that worked. I told him he could take the tape off when he turned his work in. I remember his teacher saying she noticed it and wondering if he had a button missing on his shirt or something, but then it was too high, and it always disappeared later.

In first grade I'd wrap tape around his finger (even the tape on the shirt thing wasn't working anymore, and maybe it would bug him when he wrote) that he couldn't remove until he took a reading test.

Whatever we could do to have something, anything cue him to remind him to do something. It was hard. We knew he was almost exactly like his dad with the whole needing to be cued thing, but the difference was that his dad could have a PDA, emails, and a nagging wife calling him or reminding him when he needed to do things. With MJ we hadn't found a success yet, and the school's didn't allow electronic devices to remind him of stuff (well we hadn't pushed it yet) and so we just tried little things here and there.

With my husband, who had still not accepted the idea that he had Asperger's, it was a never ending battle. Thank goodness he had all these technical devices to help, and his job had him by project and deadlines, or I don't know where we'd be. Let me tell you his days off were incredibly difficult. Nothing was getting accomplished and we were trying everything. Calenders, to do lists, phone calls......it is a difficult task.

We just wished for MJ's sake that we could find a way to teach him how to take care of things himself. We needed for him to learn to be self manageable. So the battle went on, with new inventions day to day, some working, and some not. We realized the best things were more of a reward system, although the annoyance system didn't hurt too bad either.

Cured? Matured? Maybe Adjusted?

We celebrated the birth of our fourth child and slowly got back into routine and life with 4 kids. Slowly we could refocus and try to see what was going on with MJ's schooling.

We met with his teacher and she seemed to tell us everything was great. We saw some of his work and his grades, and it looked as if there was some huge improvement. One thing in particular was his handwriting. Before he had shown terrible terrible shaky handwriting, and yet all of his work we were looking at now was super improved.

MJ's teacher said she had seen such a maturing in him over the last several months and that he wasn't having the problems that he had had before. She said he was fitting in well with the other kids, and he wasn't appearing so awkward as last year. His speech was improved and he was really shining as a 2nd grader.

OK, so it was weird. I'm not saying we were upset or disappointed that he was doing well, but it was just so weird that only months before he had been the "what can we do for/how to fix/how to manage" child, to now the "nothing is wrong at all/superstar student/well adjusted" child.

I mean, maybe he was cured? Maybe it was just a maturing thing, like some kids can grow out of their asthma, maybe you can grow out of Asperger's? I still saw him walk around on tippy toes, and I still saw his awkwardness and his speech was still in spurts, but it's not like any of that bothered me. He still had his meltdowns, and he still seemed to fit all those autistic things (don't worry, I'll post more characteristics posts later), but we were used to it, we understood and accepted him. Maybe his class and teacher just learned to take it as a part of him. Maybe they learned what worked and what didn't. I don't know for sure.

So, maybe this was wrong at the time, but I gave up the idea to worry about any I.E.P. and any monthly meetings with the teacher, and I even discontinued the therapy sessions with the childrens hospital that MJ was going to.

Maybe this wasn't any big deal. Maybe he just needed a little growing up to get a handle on things. Well, the year went well for MJ, but we were soon to see things differently as he entered 3rd grade.

Speech Therapy and Inability to Summarize

So, MJ was in speech 2 days a week. I'm not sure really what it could do for him because it seemed to me that it was more of a part of his brain functioning and processing delay that caused him to speak in chunks or spurts or to repeat the same phrases over and over. But I figured what would it hurt, so I let him go to speech and read things to the speech teacher.

He would get little reports home from the speech teacher saying how he was improving with his reading with "smooth talking" as she called it, while I was thinking she needed to work with him more on spontaneous things rather than reading because that's when he seemed to have more problems.

But anyway, this is when I found out something quite incredible.

For years I had known that MJ had this super memory and was really smart. I remember he would always be reading some 500 page book when I'd take him to the store or wherever, and I would cringe when people asked to tell them about his book because I know he would tell them word for word the entire book chapter by chapter! Well, not quite, but he would start telling them detail per detail about almost everything and it would take a good half hour minimum for him to answer. I know they were probably looking for "it's a book about this boy and a dragon" when he is going to tell the entire storyline to them. I guess I find it quite funny now.

But anyway, MJ would bring these speech homework sheets home where he was supposed to read this page long story and then in his own words tell me back the story using "smooth talking".

Now these were maybe 5-6 paragraph short little stories, and I'll emphasize that he was supposed to summarize in his own words, because it just amazed me what he would do.

There would be a story about Bob and his grandpa and how they went fishing and the boat wouldn't start and how they were scared and blah blah blah.......etc.......until they figured out what to do and got home. Anyway, Micah would read it just once for the first time, then I would take the paper away and wait for him to retell me the story in his own words.

The only thing was he couldn't do it. Now, I don't mean he couldn't, but he could not summarize in his own words, and it was somewhat amazing.

Here I was holding this paper and MJ would retell me the story almost word for word EXACT to what I was holding in my hand. Like he was doing the speaking part and even saying "said Grampa" and something something something, "Bob cried". It was as if he had the paper and was just reading me the whole story all over again, but this was from reading it once and it was memorized or something. It was incredible!

So, I began taking notice that really this was a part of MJ that if you asked him what he did today, you wouldn't just get the "we went on a field trip and I played outside", but instead you would get a layout of everything he did from the time he hung up his back pack to come home from school.

Maybe it was our fault for not explaining exactly what we were expecting, but that's a part of this whole Asperger's thing. It's like you asked me the question, now why don't you want to hear me answer? (Don't worry, I'll get into this a little later.)

Speech went on and I suppose maybe MJ got a little better at his talking, but I'm not really sure. I didn't know if it was something that could be fixed like that of a lisp or a natural stutter.