Watch Out, This Parent is "VERY Assertive!"

Look at my cute little baby boy.  

This is when MJ was just a month old or so.

I don't know how I would have reacted if I knew then how hard life was going to be for my cute little boy as he grew up with Asperger's in the mix.  Sometimes things just aren't very fair.

MJ is 11 years old now and since he skipped a grade, is now entering 7th grade this year.  That means he is in Junior High.  This is a big step for such a child.  A big step indeed, especially if you have Asperger's.

Now, we have fought long and hard to make things work in Elementary School for MJ.  It has taken time and some fighting, but we've mostly come out on top.  The elementary school had a 504 Accommodation Plan that helped him get along well.  They had worked with him to allow him to do advanced work and eventually let him skip a grade even when it "raised all the red flags" as the psychologist at school warned.  MJ had a very successful year in 6th grade both socially and academically with straight A's in every subject.  Although he didn't have close friends, he was accepted amongst his peers and was generally happy to hang out with different groups of kids.  

Well, here we were to start a new school as a 7th grader.  Now, me, wanting to be very proactive, began calling the school and sending emails to the junior high as to get ready and make sure they had all the information they needed and so that MJ would have a chance to meet his teachers before school began.  But, things did not quite work out.  My emails were shut out of their system, and no one was at the school to answer phone calls.

So, I persisted, and finally we went into the school 2 weeks before school started to make sure they knew of MJ's 504 Plan and that everything would go smoothly for the first week of school.  We weren't too worried.  MJ's accommodations are rather small.  Just a few things here and there; using graph paper instead of regular paper, needing to sit closer to the teacher, being allowed extra time on written assignments.  Mostly our major concern was making sure they knew about MJ's PDA that he used at school to cue him and to record any important assignments and information.  The junior high had a very strict rule against having any electronic devices in the school building. 

Last year he had this old PDA, like a palm pilot of olden days that he took to school to cue him when to turn in assignments, when to go to certain classes, when to stay at school, etc, but this year we gave him an old smart phone that was easier to use and organized information better.  Although it was technically a phone, it had no sim card, and so there would be no way of making phone calls or texting.  But still, I didn't want MJ to have any problems, so we met with the school counselor who assured us everything would be fine and that he would personally send an email out to all of  MJ's teachers to let them know about his PDA.  He even had us go find the vice principal to make sure he knew it was OK.  So all was well supposedly.  

Well, the first couple of days seemed fine although MJ came home telling me he had gone to 2 of the wrong classes and sat all the way through them before the teacher let him know he was in the wrong class.  (Really?!  Don't they take roll or something?)  

But then by day 3 something happened.  After school MJ met me at the crosswalk.  He wouldn't talk, he wouldn't look at me, his head was down.  I knew right away something was wrong.  I tried to ask him what was the matter, and he wouldn't respond.  Something bad had happened.  For MJ, normally when something upsets him or something bad happens, he pretty much shuts down.  He won't talk, he won't look at you, he basically looks like you just killed his dog or something.  It is very very bad.  He becomes completely withdrawn and it usually lasts for a while.  

I finally dragged it out of him after much prodding:  He told me he was in his 2nd class of the day and they were announcing something important over the intercom.  Like he has been taught (and how proud I was that he was remembering this), he pulled out his PDA to enter the important information into it.  Well, the teacher saw this, and she began yelling at him that he is not allowed to have it and must go put it in his locker.  When MJ tried to explain the teacher wouldn't listen and continued to demand he put it in his locker.  Not only that, but then she used him as an example in front of the whole class that he was breaking the rules and that no one was allowed to have any electronic device in the classroom.  Then she made him leave the class to go lock it away in his locker.

Well, hence to say I was outraged!  I had spent all this time going to the school and making sure this would not happen!   How could they do that to my son!?  

Well, I left MJ outside the school, but I marched in there and began demanding to speak to the school principal or who ever would help correct this situation.  They again directed me to the school counselor who upon me entering seemed a bit forgetful to talking with me before, but then seemed to remember and asked me, "Oh, weren't you going to shoot and email to all the teachers?"  Aaaahhh!!!  The whole reason I had met with him in the 1st place was because I couldn't get any emails to the teachers because their email system was down.  I reminded him we had discussed this and he had told me he would email the teachers.  To this he says, "Uh, oh....oh. yeah...."  

So anyway, it is only 3 days into school and now I have a 7th grader who is shut down and who has basically been humiliated in front of his class.  The counselor said he would fix it, but it is just so frustrating.  Maybe it's my fault.  I should have not left anything in the hands of another.  I should have persisted more until I knew for sure everything was taken care of. 

It's hard to think anything is funny about this whole situation, but there is one small thing.  When I first met with the counselor 2 weeks before school, he told me he had a file on many of the kids coming from the elementary school that gave the junior high a little bit of instruction about them.  Well, he read me MJ's bit which said something like, "Gifted, skipped 5th grade, has Asperger's, has 504 Plan....." and then something in which said, "Parents are VERY assertive!  Will need to be watched closely!"  Ha ha haaa!  When he told me this I thought it was rather humorous at the time, but at the same time I was glad they knew I was a strong advocate for my child.  Well, they definitely knew it to be true now.  

I didn't leave it up to the counselor though.  Sure, I figured he would email the teachers now, but I went home and typed up my own long informational email to all of MJ's teachers as to leave no questions left unanswered.  

I didn't want to make MJ having Asperger's a big deal at all.  I wanted things to be mellow and let him adjust easily to Junior High, but I guess that wouldn't work.  Something as small as a PDA in the class wound up being a huge deal.  

Hopefully, things would look up in the next few days.

A Peek into the Mind of an Aspie

Sometimes I start to think our son with Asperger's Syndrome isn't any different than anyone else.
Sometimes I start to think he is just like any other kid.
Maybe it's not such a big deal after all.

But then often as it is, I am rudely awakened by some event or experience that makes me see once again how really different he is from what today's world considers "the norm".

Our son MJ, finishing up this year of school as a 6th grader, brought home all his final papers, artwork, folders, and other such things on the last day of school. Amongst these was a school journal in which he wrote in every morning for the year. I thought I might be entertained and was curious as to what he wrote about, so I sat down and opened up this little blue notebook.

At first it seemed very normal as the first page he wrote about his summer vacation and what he did and what he liked best. He wrote about what he was looking forward to this school year and what he expected out of school as a 6th grader. Pretty normal. He wrote decent enough that although his handwriting is still very very messy as it is still difficult for him to write, I could still make sense of it. His ideas and sentences were clear enough.

Then I turned to the next page.

This page was different. It was just ramblings on and on about some computer game I'm guessing and about all the levels and who or what had to be defeated.

OK, that's no big deal, but then I turned the next page and the next and the next and tried to read all his entries. They were all just massive explanations some pages and pages long of either computer functions, computer games, levels, characters to beat, etc. Then for a break the next several pages would be about every single kind of Pokemon character invented and all their powers or skills or whatever and it just went on and on and on.

These entries would have no real beginning or ending exactly. He would just go right into what he was describing, and then I'm assuming journal writing time at school would be over so he would stop, but then the next day he would start right up continuing where he left off the day before.

Out of the whole journal for the entire school year, there were maybe only 10 entries that didn't go on and on about the technicalities of a computer or Pokemon. These other entries were limited to maybe a couple of lines about how he was supposed to write about this topic, so he would for 2 sentences and then go right back to continuation of his explanations of whatever.

Of course there were about 4 entries that stood alone. These were what I call the emotional entries. If something had happened before school that upset MJ, these were the few times that he seemed to write normally to me, although they were very upset entries about how he was in trouble, or how I had yelled at him. (Oh, awful, I know! I about died when I read these entries about how I was a mean mom and had yelled at him or said this or that! Plus his teacher had read them and put little notes on the sides hoping he had a better day! I could have died of embarrassment! )

But really, how interesting this was for me to see a glimpse into the mind of MJ. I mean, yeah, I know he can go on and on about certain topics or be obsessed with Pokemon or some strategic game or whatever, but I didn't realize that these things are going on in his mind so much that it is like this whole computer database that is just spilling out onto paper.

Is it really like that all the time? Are all these thoughts, ideas and information just spinning around in an Aspie's head full time? It's overwhelming for me to think about it. It's interesting that his thoughts and obsessions can cease if there is an emotional event though. I do want to be a better mom though. No more journal entries about mean ornery moms in the morning for next year!

5 Hours of Homework!? Searching for a Better Plan for Help with Aspergers

Things had been working out pretty well for MJ. His 504 Plan seemed to be working and he had a PDA that he remembered most of the time, and mostly he was excelling in school. On occasion there would be a few missed things that he forgot to finish or take to school because he hadn't programmed them into his PDA, but over all it seemed like he was getting all his work taken care of and he was getting good grades.

MJ has actually become a pretty responsible kid. I believe a lot of it has to do with routine and expectations. He has a set of "jobs" that he is responsible for everyday before he is allowed to play on the computer. His "jobs" consist of:

1-clean room
2-do homework
3-unload the dishwasher
4-practice guitar

Nothing too major I believe. He is very good about getting them all done each day and then having time to spare. However, on a recent Monday everything was different.

Usually it takes him a half hour to do his homework which is normally just some spelling practice and occasionally a math worksheet he didn't finish in school. But on this particular day, for some reason he had a lot more homework than usual.

I set him off to do his homework, and a couple hours later I was surprised that he was still working on it. Had he been playing around? Distracted? Reading?
No.
He was actually working straight for 2 hours. So I asked him what he was doing, and he began telling me all the things he had for homework that night. He said not only did he have his regular spelling work, but he also had to do math homework out of his book, and then he had to finish 5 different reading/language segments out of his book which involved 5 different pages of essay questions, and then he had to finish some packet and also write what he called a "myth story".

Woh. How could he have so much work all of the sudden?

Now, knowing MJ, I figure he must have not finished these assignments in class because it is often that he doesn't finish, but usually he brings things home on and off and gets them done throughout the school year. Usually it is just a page or two in different subjects, but nothing like this. Something must be up, but what?

MJ tells me it is the end of the quarter this week and he has to finish all of his assignments by tomorrow. Still, this seemed like quite a lot, and as he continued doing his homework for the next 3 hours, I felt terrible as he struggled to finish while tears rolled down his face.

MJ has a very good teacher and she is very considerate and helpful and works with him very well, so I decided to send her an email about my concerns. She quickly emailed me back and gave me a call.

What came out was that they had this sort of deal. She was very accommodating and followed his 504 Plan well. She allowed him extra time to finish his assignments whether that mean in class, or to be taken home to finish later. While most kids turned in their work that day, she would tell MJ that he could finish it later and just turn it in whenever he was done.

That was the problem. A non-literal, direct bit of communication that doesn't seem like much, but to MJ it meant he didn't need to finish that work that same day, just whenever and then turn it in when he was done.

Now sooo sad that my kids are such procrastinators (well at least he did get around to it finally), but MJ would have never thought to bring home his assignments each night to finish because she had told him it didn't matter when just as long as he turned it in as he finished before the quarter ended. Poor MJ can't process this too well and unless a person tells him he needs to do this "NOW" or a more specific time frame, then he will more than likely not do it until it is actually due.

His teacher felt really bad that he had been doing nothing but homework for 5 hours, and I felt bad too, but he did need to get it done (although his teacher said he still had until the end of the week), but something was not working here.

Dang that PDA---MJ had run out the battery and it had erased all his programs and so he hadn't been using it for the last many weeks. Was this the problem too?

There is so much that can be overcome with Asperger's with technology, but what happens when technology dies, or runs out of batteries? MJ does so well with routines in fulfilling his responsibilities, but we need to possibly incorporate future and daily planning into his routine as well. He can't always assume there is going to be a deadline for all his work in life, and if there is not, is he going to be able to do his work without his boss or teacher saying "you must do this NOW" to direct him? I do not know. It is frustrating how literal an Aspie must be, and I wonder if he will grow and mature to figure things out more in life.

I look at my husband and see so many times still that he does not get things or understand what people have meant to say. His work is all deadlines, thank goodness, he uses his phone as a constant beeper/alarm to remind him when he needs to do things, but it is still not full proof. It is often he gets behind or misses programming something in there. Maybe it will be a struggle for MJ as the years go on. We need to figure out a better plan.

Using a PDA for help with Asperger's

For the past many school years one of MJ's biggest challenges was organization. It wasn't that he was so disorganized, but that he couldn't remember where he put things, or rather the bigger problem was that he could never remember to turn things in or bring homework home.

Part of his 504 Accommodation Plan had listed that he needed to write down all his assignments in a planner and then his teacher needed to review it with him at the end of every day and make sure he was getting everything needed into his backpack.

Now, this really wasn't working. Yeah, maybe the teacher would make sure and check off his planner, but then he would still get home from school day after day not having the book or worksheet that he needed to do. Plus, if he did bring it home and completed his homework, who was to know if he actually remembered to turn it in in the morning? It was so frustrating! I was going back to putting duct tape across his shirt that he couldn't remove until he put the assignment in his back pack or turned in something to his teacher.

Now, I wasn't frustrated at the teacher. I mean, I was asking a lot to have her have to give MJ extra attention to make sure he was taking home and turning in assignments, checking a planner, etc. I was more frustrated because it wasn't going to solve anything for MJ. Was this going to be his whole life? I didn't want him to have to rely on other people to get him to remember stuff for the rest of his life. Plus, it put a lot of burden on a school teacher who already has 25 other kids in a classroom. And, on top of that, what would happen next year when MJ goes to Junior High and has 7 different teachers? Would they all have to have special instruction to help MJ?

We are all about self management and independence, and so we began to think....what could we do? For my husband, also with Asperger's, he had the same problems with remembering things as MJ. I swear he could not remember to do anything if it weren't for his smart phone that he had programmed to beep at him and alert him whenever something needed to be done.

Well, that was it then! OK, so the school systems don't allow cell phones so how would we make this work?

Years ago before all the fancy phones came out, my husband bought a PDA for himself. For those of you who don't know what that is, it is basically a personal hand held little computer that can do anything from have the internet to be an alarm clock, play music, be an organizer, and more. We actually still had it and thought it would be awesome for MJ to use this to cue him during the day.

Now, how about incorporating it into the school? He didn't need it to play songs, have the internet, or play games, and for sure the school was not going to allow that. All we really wanted was it to have a way for MJ to enter in important information like homework assignments, when things are due, but then most important--a way for it to remind him when he needed to do something at school. The problem still would be if he would actually remember to program it or read the to do list.

Well, we decided to set up a sort of alarm system that would beep at him and he would have to take it out, read it and then turn it off. It couldn't be loud, and we didn't want it to distract the class often, so we set up 3 specific times to beep:

--Morning right after school starts--remind him to turn in all assignments

--Right before lunch---remind him to go the bathroom (Yes, I know this seems dumb, but seriously sometimes MJ is so involved that he can't even remember to go the bathroom and that makes for big problems later.)

--And finally, right before the end of school bell rings---remind him to get all assignments into backpack (He enters more specific when he knows what they are.) and then certain days when he has after school activities it will alert him when he is to stay at school instead of walk home.

We had presented the idea already with the Principal and the new 6th grade teacher, and they were OK of the idea so we sent him off to school to see if it would work.

Well, win some and lose some---there were some days when the battery was too low, or other days when he forgot to program something, some days he would forget to take it to school all together and we joked that he needed a PDA to remind him to remember the PDA! Overall though, I think it was helping. Some days it was frustrating that he would lose points on assignments because he had not remembered to bring something home, but it was because we weren't aware of it to program it in the PDA.
Over time I think he began learning when he needed to enter in new assignments or daily reminders based on what he needed to have done every week.

So, maybe this was going to work. No, a PDA is not fool proof, but it's something that can help gain independence for someone with Asperger's. It's maybe sad to think that he may have to rely on some computer to tell him when to take a shower, go to school, do an assignment, go here or there, but is it any different from anybody else that has a to do list, a personal planner, or something else to remind them?

I guess with Asperger's the difference is that a regular person would see the need for the basic stuff---like the need to take a shower, to go the bathroom, to eat, to clean up, when a person with Asperger's may not always realize the need until it is pretty far messy, stinky, or now they will have to rush to the bathroom. Not everyone is like this with Asperger's. I'm pretty sure my husband is a pretty clean person and takes daily showers and eats, and goes to work and yeah, he will clean up about the time he can't see the floor anymore or do some laundry when he doesn't have any more clean underwear! I figure he is very scheduled with most of his things though. There has to be a time for everything.

Special Ed?

So, it was the end of the year for 4th grade and all of the sudden we found out the principal who had been so wonderful and accommodating with MJ was going to be transferred to another school. This had us extremely nervous.

How would we know what the new principal would be like next year? How did we know she would allow MJ's 504 Plan to continue or accept it?

We were very worried, so we decided to set up a meeting with the current Principal and the school psychologist BEFORE school ended to update the 504 Plan, plus maybe talk about how it had not worked very well over the past year because the teachers were not following it consistently.

It took us much calling and emailing to set up the appointment, but when we did we were actually surprised what was suggested.

Now, as you have read in previous posts, MJ had several things listed in his plan which were supposed to help him throughout the day. The problems we were having was mostly that the teachers were forgetting to follow through with these helps.

One of our biggest problems still was how MJ would get home and not have the work he needed to do. Or he would be getting in trouble for not remembering things or finishing assignments. According to the 504 Plan, the teacher was supposed to be helping to cue MJ and to be checking off his day planner at the end of the day to make sure he had all the assignments going home placed in his backpack. This was not happening.

Now, good grief I know the teachers have a lot to deal with already, and I'm not blaming anyone. And really, what good was it doing having the teacher always having to cue MJ or remind him or whatever. Yes, it would help, but was it going to help him in the long run? No. We really needed something so that he could learn on his own and something that could help him in the future so he didn't have to depend on other people.

I've been trying to get MJ to be more independent. I've been teaching him how to cook, do laundry, dishes, and jobs on his own. Why not keep going? So anyway, we thought maybe we could discuss allowing him to use his own personal PDA that would cue him when he needed to be somewhere, do something, or most of all---what work he needed to bring home and get done.

There were some other things we wanted to discuss too. He was meeting once a week with the psychologist to talk and play games with 2 other boys. I'm not sure what the purpose of this was. I think the other boys had some sort of anger management thing and maybe he was assigned this time because of the whole biting incident.

I was disappointed though. I figured maybe this could be a chance for him to learn more social skills as far as being taught or going through social stories to learn more how to appropriately respond and act amongst "normal" people.

At the meeting we touched on the idea of a PDA, and then when I began talking about my hopes toward social teaching, the psychologist suggested a different possibility. She suggested Special Ed.

OK, so I don't have anything against special education classes. If fact I think they are most wonderful for the right students, but I did not think it was the right place for MJ.

MJ had his issues, but he didn't really need a special ed class to get him through school. He was extremely gifted. At the beginning of the year they had done a series of tests and told us that he was extremely intelligent and in the "superior range". Now, not to say that anyone in special ed can't have a high IQ, but I just didn't see what purpose it would be to place him in a special ed class.

Just because he needed some social teaching and guidance, he isn't allowed that unless he is put in Special Ed?

I guess I didn't understand. Really we were meeting for yet another reason, which we will explain in our next post.

Forgetting to Follow the 504 Plan

The new school had a copy of the 504 Accommodation Plan set up for MJ, and we had met with the school Principal, psychologist, and his teacher, so we figured all would be well. However, we soon began to see holes developing in this plan and things were not working out as hoped.

Not that the teachers were doing anything wrong. They were just often forgetting the things about MJ, and how certain things should be handled. I know it is difficult to be a teacher enough as it is with having close to 30 students in a classroom. It is hard to remember everything with that many students, but I thought that was the point of having a 504 Accommodation Plan so that it was something in hard copy that could be looked at to help remind them.

MJ had a wonderful teacher, and we were lucky to have her. She had previous experience with other students with Asperger's, and so we knew she would work well with him. The problem we were having is that MJ was coming home again without assignments, or he was not even doing some assignments because she was not being literal enough. He was having meltdowns in class because he wasn't being told to go to other classes on time. He wasn't communicating with the teacher and so was missing out on various things. He wasn't finishing tests because he wasn't being given enough time to write.

Now, as a refresher, I'll explain some of MJ's difficulties;

With MJ's Asperger's, it affects the way he is able to process information. While he is super smart, he is unable to process the information quickly enough to put it out in words or on paper. This has caused him to fall behind in timed tests or not be able to finish things at the same speed as other students. His motor skills are not very smooth and so he appears awkward and clumsy. His handwriting is very forced, slow and sloppy. He doesn't see spacial relations very well and so any information on paper that he writes appears jumbled and smooshed together. He doesn't understand personal space and so often gets too close to others. He doesn't understand a lot of social cues or rules. He only understands direct, literal communication and instructions. He becomes too focused on most tasks and so cannot remember smaller tasks. He must be constantly cued to remember when or what needs to be done or what to bring home.

So, because of all of these things, his Accommodation Plan was set up to help him to succeed despite these challenges. MJ was super intelligent, but in order for him to live up to his full potential and succeed in school, he needed these few directions:

His Plan listed 6 accommodations:

1-To be allowed extra time to complete written work, or cut written work in half, or perform assignments/tests orally if needed.

2-To be cued when invading others' personal space.

3-With the teacher's help to go through his planner at the end of the day and make sure all needed materials for homework are getting in his backpack to go home.

4-Seating closest to the teacher and importance of teacher in using only direct and literal instructions.

5-Allowing him to use graph paper to help better organize work on the written page, especially in math.

6-Having the teacher cue him when talking inappropriately loud or soft, or too fast.

So, anyway, yes, it was a lot to take in, but not that difficult to accommodate. Well, at least I didn't think it was a big deal. Then again, we've been doing this for years.

MJ was coming home from school and he didn't have homework again. He brought home a midterm with all A's, yet a C in English because he wasn't finishing written essay questions on tests in time. He wasn't completing tests or doing certain assignments in school because he was not being told he "had to do them", but only being asked, "why are you not doing this?"

Nothing huge. I just had to email the teacher several times, and at one parent teacher conference I had to remind her that he can't ask a kid with Asperger's why they haven't done something to mean that they are supposed to do it. They will not understand. I was surprised when meeting MJ's math teacher (They had recently placed him with a higher grade math teacher.) that she had not even been told about his Asperger's or shared his 504 plan.

I guess it was just a little frustrating to have to keep reminding them of what was supposed to be taking place. Yes, they were always very very nice and accommodating, so I guess I should be very grateful, but I just thought the whole purpose of this 504 Plan was so things could go a bit smoother. This was life I guess. Always a challenge. I'm sure it will continue to be a challenge. We just keep taking each day a step at a time.

Biting?!

4th grade seemed to be going well with MJ. I had met with the teacher the first week and shown her his previous 504 accommodation plan from the previous school. She informed me that she had a student with Asperger's before, so she was somewhat familiar with it.

I was a little concerned that the principal didn't seem to think it was necessary to update the 504 plan or have the new school team sign it, but he assured me that they would follow it just the same. So I let it be.

Things seemed pretty good. I didn't hear of any problems. Then it came time for parent teacher conferences.

As I was finishing up with my younger son's 2nd grade teacher, I noticed the principal waiting for me. He seemed to want to go with me to meet with MJ's teacher. Gee, I thought that was pretty nice that he seemed all concerned MJ was fitting in, but yet did I know what was really going on.....

We had met earlier in the week with the principal, teacher, and school psychologist setting up a plan for MJ which I will get into more at a later post, so I did think maybe the principal was just coming with me to PT conferences to show his involvement and support. We also had the school psychologist join us, so I thought we were pretty popular, but really I soon found out that there had been an "incident".

The teacher went over MJ's grades and progress and all that, but then she asked him if he had told me what happened yesterday. I can't explain the expression MJ was making, and he was silent, so I was a little confused as to what happened. I was hoping it was a good thing? Apparently it was not.

Yesterday, as the psychologist explained, things got "escalated". Escalated? What exactly did that mean anyhow? She said MJ was playing with another boy and then she used that word again, and I'm thinking huh? But then she says MJ bit the other boy. Bit him on the upper shoulder?

I'm sitting there in disbelief because MJ has never ever ever bit another kid. Never. Not even his brother at home. How could this be? And, how does a kid bite another kid on the upper arm/shoulder area? What would possess someone to do that?

MJ was very upset. He wasn't saying a word, but tears were streaming down his face. I was super upset---not exactly upset only at MJ's actions, but at the whole embarrassing and horrifying situation in itself. Here I was in front of the teacher, the principal, and the school psychologist, and they are probably waiting for me to do some disciplinary action of some sort, but it is all shoved on me at once.

I am trying to tell them that this has NEVER happened ever and at the same time I am asking MJ why he would do this and telling him that this is totally unacceptable, and I'm thinking biting is a pretty big terrible thing, and wondering what comes next, suspension?

Then I am surprised at what happens next. The teacher and school psychologist begin showing me MJ's marks in citizenship and behavior. On his report MJ has all H's meaning honors, but then he has one S (for satisfactory) but with a circle around it and a star they have drawn next to it. They tell me he has done well, but as far as behavior is concerned he only has an S, but it is because they understand he has Asperger's and that it is OK. In a sense they were telling me that it was OK for MJ to misbehave and that it was OK because Asperger's was his excuse.

OK, now, I agree there are some issues sometimes with MJ and his Asperger's, but I do not accept it an excuse to bad behavior. I have taught and raised this kid to behave well and to make good decisions, and I do not allow him to get away with misbehaving, excusing it to Asperger's. I mean, yes, a lot of the time there have been incidents where he has gotten in trouble at home or at school because of things related to him having Asperger's like a misunderstanding, or not getting the social rules or the problems with change or transitions, or whatever, but it has never been outright fighting, hitting, or biting. I did not accept this excuse, while the school seemed to excuse it off.

I asked them what should I do, if I should contact the other child's mom to apologize, or what proper procedures did we need to take care of, and they told me it was all fine. I could sense that possibly they were telling the other kid's mom "sorry, but the child which bit your son has autism, and it's being handled."

OK, so I don't really know all that was said and what they told the other parent, but I just had so many emotions going on right then that it was overwhelming. No, I don't approve in MJ's behavior at all, and I sure lectured him for a very long time as well as his dad that we are to NEVER EVER EVER EVER bite anyone EVER (unless it is strictly absolutely necessary in self defense or something), and then I made him write an apology letter to the other boy.

I guess I'm somewhat surprised mostly that this would happen, but as I started to notice later, MJ did seem to bottle up his emotions a little too much, and then he would get upset and just act without thinking. I saw this with his brother sometimes. Or, I guess I've seen it more as emotional meltdowns where he is crying about change or something that didn't go as planned, but I had just never seen the anger part.

Still, I don't want Asperger's to become this sort of excuse for him. I don't want the school to be excusing any bad behaviors or actions because of it. It is not an excuse. It may be difficult at times, but there is no reason why MJ can't choose to act more appropriately and follow the rules just like any other kid. I hope that there are not exceptions being made to things at school for MJ. Yes, I am all for accommodations, but not exceptions to the rules---if this all makes sense?

I guess I am glad that MJ did not get into more serious trouble at school, because he really is a good kid, but at the same time, I am troubled by the lack of discipline. I mean, really, if some kid bit my kid, I would be pretty upset and hope that the other kid was getting in some kind of trouble be it missed recess or whatever.

Of course, there goes the other fear that I gained this day---now, who was going to be MJ's friend? Or rather, who's mom is going to let their child be friends with the kid who bites? Yikes. How would things become now?

Changing Schools for the Better?

The beginning of MJ's 4th grade year and his brother's 2nd grade year, we made a drastic decision to switch schools. We had struggled for the past 3 years at another school trying to figure out things with MJ, and finally we had gotten them to set up a 504 Accommodation Plan for Asperger's. This was the last month before school ended for summer break and so we were looking ahead feeling pretty confident things were finally going to be OK.
But then we made a last minute decision and things all changed.

MJ and Thomas were both in a full time gifted program located at another school within the city but further away than their home school. While it had been great for Thomas so far, MJ had struggled for the last 3 years trying to find his place as a gifted student with Asperger's. It had not gone easy. It took us a year to find the diagnosis, but then another 2 years to get the school to accept it and willing to make any accommodations.

MJ was so smart, yet he had certain setbacks such as processing delay, sensory issues, problems with speech and stuttering, misunderstanding of nonliteral communication, bad organization, forgetfulness, and invasion of others personal space. Not to mention his awkwardness, strange gait, and the need to be constantly cued. But yet, because he was so incredibly smart, these things often could be hidden, until 3rd grade where problems were arising.

Long ago I had gone to the school and asked them how they could accommodate MJ. According to the doctors and testing, they told us MJ was in the genius range as far as knowledge, IQ, and academics, yet because of his Asperger's his processing was way below average and so it was as if MJ was this super smart kid who couldn't get his ideas out or communicate them fast enough to show others. That didn't seem fair to me, so I asked the school district what could be done to balance this out so he could show his full potential. They told me, "it doesn't matter what diagnosis he has, as long as he is not failing academically, then we will not make any kind of accommodations." I remember being very very frustrated. What an injustice to a gifted child.

Anyway, we fought long and hard trying to figure out how a child with Asperger's fits into a gifted program. Finally at the end of 3rd grade we were getting some results and a 504 Plan was set up. It may have made 4th grade to be a great year for him academically, but another problem was on our mind---his need for socialization.

MJ had struggled with this for years. Although he did have some friends, most of them were in the grade level above his, and many of them were not close friends. He would go tag along with some of the other kids at recess or try to involve himself with the other kids, but none of them were really close friends, and I think they just humored him or let him play along to be nice at times. The problem with the gifted program is that he was stuck with the same 12 kids for all 6 years of Elementary School. This is great if you've got good friends, but if you can't find your place, then it leaves you stuck and alone. MJ often came home very sad and depressed being that he had no friends to play with at school.

Maybe it was part of having Asperger's that he had trouble making friends or knowing how to act socially, but maybe he could do better if there were more possibilities of friends in greater numbers. So although we knew MJ needed the challenge of a gifted program, we made our decision to change him back to our home school hoping for a new chance to make friends. We had our fingers crossed and hoped for the best. The home school had the largest 4th grade class of 4 classrooms with over 100 4th graders. Going from 12 4th graders to 100 is a big difference. Could he find friends here?

We met with the Principal the Friday before school started and introduced our boys. I alerted him of MJ's Asperger's and his established 504 Accommodation Plan. We discussed what accommodations needed to be met, yet also his giftedness and my concerns for how he needed to be challenged. The Principal seemed great and addressed my concerns. He said he would take all things into consideration to find the best match for a teacher for MJ.

And so we sent our boys off on the 1st day of school and hoped for the best. Would he make a friend? Would the teacher be OK? Would this school make a difference?

Completing the 504 Plan

So, we met with the Social Worker, the Principal, and MJ's teacher on a Friday to write up a list of goals on the 504 plan. If you aren't familiar with what this is, it is basically a binding contract between the student, parents, and teachers as to what goals are to be met and how each person is going to contribute to making these goals happen. On one side is the goal, and on the other side is what each member of the team will do to aide in this goal.

As we sat together, it was interesting as I realized me as the parent probably knew the most about what was to take place and what should be established. I was impressed that the social worker and the principal had been researching into Asperger's and they had several articles they had pulled up on the internet, and the Principal referred to a book about Asperger's. So it was good to know they were actually interested and wanted to to their best.

Anyway, here is what was established:

They set up 3 main goals.

1-Organization (to help him get more organized, i.e. having teacher sign planner and review that he has actually gotten his stuff in his backpack to go home for homework)

2-Maintaining Personal Space (help him when cued to back up or give people more space)

3-Placement of Written Work on Page (using graph paper, limit written work, more oral type assignments)

So this was it for them, and being a good advocate for my child, I did not sign it, but told them I would take it home to review.

During the meeting the teacher kept saying there was a lot of things that she already incorporated with MJ in the classroom, but I felt that it would be best to have a legally binding document to keep her doing these things, so after a bit of extra researching and studying up on 504 Plans for Asperger's, I added 3 more goals and brought it back to the school. I added:

1-Executive Functioning (saying the teacher must monitor in class work, use direct and literal instructions, and give preferential seating close to the teacher)

2-Speed in Completing Assignments (allowing extra time for any tests or timed tests as needed)

3-Communication (cueing MJ to slow down or talk louder or softer depending on the given situation)

So, in the end, we had 6 goals for MJ and we all signed it and I was pretty happy with it being that they accepted everything I requested.

I was excited to see how this would make things more smoother for MJ and us. Hopefully now he wouldn't be coming home everyday with homework assignments, but not the homework. And hopefully he wouldn't be failing assingments because of these timed tests that were too fast for his processing delay. Hopefully he would be understanding more instructions that were literally directed to him and he was going to have a happier year.

Of course the only problem was that this was the middle of May, and school was basically over for the year, so we would only hope that starting out next fall that things would go smoothly. MJ was going to have the same teacher next fall for 4th grade (he's in a full time gifted program that joins every 2 grades together), and hopefully this year would be better.

Saved by the Social Worker

We went to contact the school's psychologist as requested by MJ's team of doctors, but were surprised that the school didn't have one. I told the secretary that they wanted all these observations to be done on MJ and some evaluations and further testing, and she referred us to the school's social worker.

Now, I'm not sure what a school social worker is over or what their job entails, but ASAP this gal called me and started to review things about MJ.

It turns out that she has been in the school since MJ has been going there for the last 2 1/2 years, but has never once been notified of anything having to do with MJ. This very much surprised me. Well, it surprised me that I didn't even know the school had someone who was over students in this kind of manner.

We had initially dealt with the special ed teacher, the speech pathologist, the principal, and the teachers, but why would no one have suggested bringing the social worker in? After talking to her for a while, it sounded like she was the one who dealt with kids who didn't quite fit in at the school or had different problems relating anywhere from autism to ADHD.

Now, how come she wasn't notified?!!!

Well, anyway, this gal was the first person I have talked to within the school district that actually seemed to want to help and get things accomplished. Yes, MJ's teacher in 1st and 2nd grade was great and worked with him well, and yes, the special ed teacher was nice, and yes, the speech pathologist before was nice, but no one seemed to think we needed something more to help MJ. No one seemed to know what to do or what should be allowed. This gal was educated and this gal was going to get things going. We were not going to allow MJ to fall through the cracks.

So at this point I was pretty optimistic and had high hopes of achieving something new. She told me she would do a series more of testing and evaluations/observations, and then she would get back to me and we would see what accommodations could be made for MJ.

Hooray!!! Was this finally it? Had we finally gotten some results in this 2 1/2 year struggle to get help for MJ? We waited in anticipation.

The School Says "Zilch"?

Since we seemed to be having continued problems during his 3rd grade year, we decide to contact the group of psychologists and doctors that had initially helped with MJ's diagnosis to see if they could help us get an I.E.P. established.

When calling them, they were surprised that MJ was out of speech now and that no I.E.P. (Individualized Education Plan) had been set up.

I explained to them that the 2nd grade teacher had been great and knew exactly how to work with MJ since she had him the year before, but now things were a little more difficult this year.

MJ was totally unorganized, his speech was still terrible with talking too fast, too loudly or softly at the wrong times, he was still not understanding social cues and nonliteral commands, not getting work done, and he was getting in trouble a lot for things he didn't connect with or understand.

I felt like something had to be done, but I didn't know how to approach the school myself, so this is why I called them.

After talking to them for awhile, they asked for a variety of observations to be done on MJ at school and for some other various testing. They said the main problem I might have is that the school didn't seem to believe that MJ had Asperger's. They said after they diagnosed him almost 2 years ago, that they sent all these evaluations to the school to have the teachers rate MJ, and that they had all come back as "zilch" as they said it. They said that MJ's teacher's didn't see any problems with him whatsoever.

This made me a little confused, maybe a little upset, a little questioning....I mean, the school is who came to us in the first place saying something is wrong with your son---go figure it out. They are the ones that suggested such things as "Previous Brain Injury" or other awful things that could be wrong. They are the ones that told us that he was having problems and something wasn't right. So now we came back with a diagnosis and all of the sudden they were saying that everything was fine and that he didn't have any problems whatsoever? I didn't understand. Why would they do that?

So although these doctors, psychologists and specialists were putting on record and diagnosing MJ with Asperger's, it didn't do well enough to get the school to want to do something. As I had trouble earlier and told by the district that "it didn't matter what diagnosis he had, that there was no accomodations allowed unless he was failing academically". This did not seem fair to me.

MJ's doctors asked me to contact the school and ask the school psychiatrist to do some of these observations and bring back up the results of some of his previous testings. Then, maybe with some of these results they could help me know how to direct the school for help with an I.E.P. for MJ.

Problems from not Establishing an I.E.P

OK, now before you read this, I am not "bashing" MJ's teacher in any way. We are just trying to figure things out. We thought we needed an I.E.P., but then the school made it seem like things would work out. We've only looked to the school for direction and where to place MJ. We know teachers have enough responsibilities and kids to deal with and they can't focus on just one kid, but we are just trying to see what we can do or what accomodations need to be met.
*****

I thought we had been pretty lucky. We had gotten through 2nd grade without a struggle, and although we were seeing added characteristics of his Asperger's during the summer, we still thought maybe things were going to work out for MJ. We were on the ball and met with the teacher the first week of 3rd grade. We gave her an outline and a list of detailed information about MJ, and we thought things would go well, but soon things went elsewise.

#1-The first month of school I noticed right away that MJ was coming home with tons of homework. I felt bad for the poor kid. He would be doing homework from 4 pm till bedtime. I didn't understand. His teacher said at the beginning that homework shouldn't take longer than 45 minutes, but with all the stuff he had it wasn't possible.

I let it go for a while hoping things would mellow out, but they didn't. I finally emailed the teacher asking what was going on. She emailed back to say that MJ was supposed to be doing these things in class and only taking home what wasn't finished, but I guess somehow he wasn't even getting started on these huge booklets of work.

Well, then what was he doing? I know he has the distraction issue where he could see something on the window and stare at it for an hour, but wouldn't the teacher notice? She promised to keep a better eye on him and for us to let her know if anything got ugly again as far as homework.

#2-Homework wasn't bad for a while, but what MJ was having problems with were these timed math tests called 36's. (36 math problems that must be done in 90 seconds.) We found out about them over the summer and remember I directly asked the teacher how these were going to be worked out because of MJ's processing delay. She said she would try doing some orally, but really it doesn't matter orally or written, there is still the delay. I did not and still do not agree with timed math tests for grade. Sure, I think it's OK to have limits like you can't take forever but making math problems a pass or fail if not finished just seems unfair to me. If they know the facts, they know them. Why must they be timed?

Anyway, he was not doing that well on these. He knew them all and we worked with him daily shouting out multiplication and division problems but there is always the delay. He knew them all, and he wasn't stalling, it's just part of MJ. It takes his brain an extra second to process and verbalize or write. No big deal, but for a timed test it meant a big difference. Pass of fail! I kept telling him it didn't matter if he couldn't pass these off because I knew he knew them all and the tests were just stupid. (Yeah, I know, I probably shouldn't have been giving him a bad attitude, but I couldn't help it. They were unfair for a kid with his disabilities.) I told him I was proud of him no matter what.

He seemed to accept this until he started coming home telling me that the teacher was making him stay in from recess everyday until he passed off every 36 test. So, that meant he was being punished everyday to stay inside and do test after test after test until he could pass them. At this point he had stayed in the whole week so far.

#3-Now, the meltdown---one day in particular I picked up MJ from school and he was in tears. He was super upset because he had gotten in trouble repeatedly enough times that he was in big trouble with the school disciplinary rules. (They do so many warnings, and then you have to face consequences.)

I asked him what happened and he said first his teacher marked him down for not doing his work but he said he was trying but another group was working right next to him and he couldn't concentrate on what he was doing with them talking. (Now it is seriously impossible for MJ to work with a lot of distractions.)

Next he said he got in trouble because the class was talking. (OK, so group punishment, I can handle that.)

But then 2 strikes means you must stay in from recess. So OK, that's fine, but when it was time for recess his teacher came up to him and said "I hope you know that THIS IS RECESS TIME." So MJ, being that he takes everything literal and he must be constantly reminded and cued to remember things, looks at his teacher and takes her sentence as, hey--I need to go to recess now. So he does. And as soon as he does, his teacher tells him that he did not fullfill his punishment and stay in from recess, so he is in trouble a 3rd time.

OK, so it really wasn't a super big deal, but MJ was really upset. I mean, sure he was distracted, but couldn't he move to another place to work? And then if he is being punished, then can't you just remind him "Hey, remember you got marked down twice, so you need to stay in from recess" rather than making some hidden statement about it being recess time now (when you're really meaning, this is recess time now, NOT for you because you're in trouble) and then punishing him yet again for not fullfilling the punishment?

We already outlined all these things at the beginning of the year about
#1-processing delay
#2-distractions
#3-constant reminders
#4-the need to be cued
and many many more, but why was he getting in trouble again and again?

I felt so bad for him because he was just crying and crying trying to tell me how he didn't mean to do wrong and he didn't mean to be bad, he just forgot he was supposed to stay in and his teacher didn't remind him and why would she tell him it was recess time now?

So, goes to say, what I thought was going to a smooth year was just getting ugly, and apparently I was dumb to think he didn't need an I.E.P.

I did email her right away and I was actually very nice stating things like, "what can we do to help solve these problems together" and then restating some of the instructions and characteristics of Asperger's for her info. But when she did not email back, I took this as a negative, and a need for me to look for help in other places.

I immediately began contacting the school department head and calling MJ's team of doctors to see how we could go about establishing an I.E.P.

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.

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.

Starting 2nd Grade---Promises Not Kept

So, over the summer we met with the team of doctors and kind of put the appointments on hold. From what his teacher had told us, it looked like the next year of school was going to work out. Supposedly he was going to have an IEP set up in the fall and we were going to be meeting with the teacher the 1st week of every month.

Well, he started school, and he was in 2nd grade, but he had the same teacher because his class was a combined gifted 1st/2nd grade classroom. The first month went by and I didn't hear anything from the teacher about meeting or setting up something. I was patient. I figured I'd let school get going first.

Then another month was slowly creeping by, and by now I figured no meetings or appointments were going to be made. Maybe they weren't needed? From last year's "special ed" meeting, they had put MJ into speech, and a speech pathologist was working with him on a weekly basis, but besides that, there were no other accommodations made.

OK, maybe he didn't need any. Maybe everything was working out. Maybe I was still in denial. Maybe I thought MJ didn't have any problems anymore. Maybe he had grown out of it?
I suppose I should have been the one that requested a meeting, or said, "hey, didn't you say you were going to do this or that, or what about that word processor thing?" But at this time in my life I was 9 months pregnant and expecting our 4th child. I didn't have the energy, so I just waited to see if I would hear anything.

The Plans

When we met with MJ's teacher at the end of the year parent/teacher conference , she had all these plans for what she was going to do next fall. (MJ was in a full time gifted program where he had the same teacher for 1st and 2nd grade, so she would be his teacher again next fall.)

She said over the summer she was going to figure out this sort of word processor thing to see if MJ could use it to help get some of his assignments completed faster. She said she would set up an IEP in the fall and she would set aside one day the first week of the month to meet with us to discuss any concerns or answer any questions.

So, it sounded good. It sounded like he had a rough year trying to figure out what was going on, but now we knew, and next year would be good. We would be meeting more with the psychologists and pediatricians over the summer and be receiving more insights to help MJ.

And going into 2nd grade, was it good? Were all these things followed through? Were there any accomodations made? Was MJ improving?

Well, yes and no. It was interesting to see how things changed in 2nd grade.

The Ugliness and Misunderstandings

So, shocked and surprised MJ's teachers didn't respond as I thought they would, I went and talked to the Special Ed teacher. I told him how I thought it was dumb that the district didn't care about accommodating a child with high functioning autism unless he was failing. So what if academically he is doing "alright". "Alright" is fine, but from all the tests they had done with MJ, they had come to the results that his intelligence was within what they called "genius range", and so I thought--let this kid live to show his full potential!

MJ was in a gifted program, but I know he would soon fall behind. He could not communicate smoothly or fast enough. His handwriting was terrible and so slow that he could not finish assignments on time or finish in class. He needed to be "cued in" before explaining any important information or else it would not register with him later.

I remember earlier, as they were coming to a possible conclusion of Asperger's Syndrome, that when I told this to the teacher, she immediately disagreed. But it's OK. There are actually a lot of variations of Asperger's Syndrome. It doesn't always mean you are antisocial or only smart focusing on one subject. It can have all sorts of characteristics.

But now, here we were, and this was the diagnosis, and why did she want me to figure this out, when she wasn't going to accept it in the end?

I talked to the Special Ed teacher about the lack of response from MJ's teacher, and he suggested making some sort of a notebook to pass to and from school as a communicater between the teacher and me. I thought this was weird somewhat, but I left and figured something might get passed along to the teacher.

And yes, I received phone calls and a letter--all which made me feel dumb and embarrassed, but MJ's teacher said she didn't read the paperwork and emails and reports as being a final diagnosis. She thought they were still trying to figure things out, so that is why she didn't respond much. (Of course, having a form of autism will be a lifetime of figuring out things, and this is only the beginning, but it is enough to want to start something in the school system as far as restructuring some things.)

I felt bad I had created this sort of ugliness and tension between us, but I was angry that after sending in pages of medical paperwork and writing a super long email, she had come back with so little. She apologized up and down, and being that it was nearing the end of the school year, she made plans on what she would do for MJ starting next fall.

Informing the School

So, we took all this paperwork and went to MJ's school. We gave it all to the teacher, and we emailed the speech therapist and talked to the special ed teacher. And then we waited for a response.

And then, to our surprise, we didn't get one. Well, we got a short email back saying something like "thanks for the email and let us know of anything if it pertains to the school setting".

And I was angry and frustrated. Here we had all these teachers and people telling us that we needed to go get MJ checked out, and then we did, and we got an answer, but then it was like nobody cared. I was like, "Hey! YOU are the ones that told us to see what was wrong, but in the end you don't even want to hear it?"

So, being upset and angry, I surpassed his school and went right to the school district. I called up and talked to the district coordinator of children with special needs. And then I was more shocked.

I explained to her how MJ had been diagnosed and I was wondering how his school plan was going to change to help him. Yes, he was smart, but he was having difficulties with writing and speaking as part as his Asperger's and it was taking bad effect at school toward his performance. I wanted to know what I was supposed to be having take place. Like, isn't he supposed to have an I.E.P (specialized individual education plan) and isn't he supposed to have some sort of accomodations if needed now that he has been through all this medical testing and they have officiated an answer?

The district coordinator basically told me that it didn't matter what medical diagnosis anyone had, but that they would not do anything as long as a student was not failing. So, since MJ wasn't failing, then why should he need any changes in the classroom?

I was extremely upset by this woman. Basically, I can have a super smart child who will never be able to show his full potential because the school district won't allow him to produce his work by any other means (word processor, computer, typing, giving extra time, testing orally, etc...) except for the normal rules for any normal student.

No, I didn't want MJ to get special treatment, and I didn't agree that he should not practice his handwriting and go to only typing things, but I did think that some things needed to change or be allowed so he could perform better at school.

To me, it was like having a Stephen Hawking but not allowing him to be in a regular classroom or to use a computer to speak. Yeah, I'm sure he could just go on doing so-so work and not finishing assignments because of his processing delay and coordination issues with handwriting, and not being able to answer questions in class because of his language issues, but if he was really so smart, then why couldn't they let him be able to show it?

OK, so I was somewhat jumping the gun, being that I had not had a real 2 way discussion with the teachers at his school yet, but I was just surprised by their lack or reaction and then the district rules seemed so dumb to me.

So, I went back to the school and went straight to the Special Ed teacher who had been best to help before.