Preschool Evaluation for Asperger's?

As we have talked about before, our little Rose was having some problems.  She was 3 1/2 years old now and while she had always been a little more solemn, shy, and reserved, now she was having huge issues with separation anxiety as well as any forms of socialization.  

From the beginning, my husband with Asperger's has said "she's got it".  Like it's some 6th sense or something that he just knows she's an Aspie as well.  I don't know if I believe that is possible, but it is true that we see many similar traits and behaviors similar to that in our oldest son with Asperger's.  

It is interesting that before 3 1/2, she talked, she played, although never to others she didn't know.  She talked and played with us.  The only time others would hear her talk was when she would sing song to herself somewhere.  Rose tends to just ramble on and on to herself at play, but it isn't talking, it's singing.  She's always been singing what she wants to say.  Everything is a song.  At least she was talking even if it was in song.

Yes, she didn't really ever respond to others.  She wouldn't look at other people or hardly ever smile, but she knew how.  When she did show emotion it was very copied.  She would smile if we smiled or show a surprised face if we did or looked mad if we did.  We weren't too worried, we just continued to observe.

However, when summer came and all of the sudden she shut down, we began to worry.  For 3 months she would not go to anyone else.  While she used to go to a church class, now she was terrified of the people and environments that she had always known.  She screamed in terror, she cried at any little thing that frustrated  her.  She stopped talking.  She wouldn't go to family members.  Something wasn't right.  

We tried many things but finally decided to see if she needed some sort of an early intervention program.  We agreed to having her evaluated through the school district at a local preschool program.  They were to evaluate her in 2 ways; 1st in communication (which I don't think she had a problem with speech or vocabulary---she could talk, she just wouldn't talk or initiate her own thoughts and words), and 2nd in socialization skills (This is where I thought she had most issues as she would only play with kids over a year younger than her if any at all.)

The preschool wanted to evaluate her over a 30 day period.  So we took her to preschool 2 days a week for a little over a month.  Right away we were amazed as she began opening up to us again.  She was talking again and finally after a summer long of not going to church class, she could go on her own again.  She began  feeling more comfortable around neighbors she knew and grandparents without the screaming fits.  It was wonderful, however, we still noticed the same issues in socialization.  

When we would pick her up from school she was always playing alone lining up all the play food in the kitchen.  All that time I never once saw her interact with another child or playing with another child.  While when she first began preschool the teachers would ask her something like, "what would you like to do?" and she would respond only with "yes", now she was actually talking to her teachers.  

By the time evaluation time came to a close, I know that the teachers and staff probably thought we were crazy because she seemed perfectly normal to them.  I felt stupid, yet we still knew there was something different about her.  

The team sat down with us and went over there findings.  First the speech therapist told us that her vocabulary was very high and had no communication problems with speech.  We again stated that we knew she didn't have speech and language problems, it wasn't that she couldn't talk, but that she wouldn't talk.

Then, when they explained her socialization, they said they didn't see any problems because she played and took part in the different activities.  I asked about how I only saw her playing alone, and they said that was normal because she always played with the play food in the kitchen everyday and there were mostly boys in the class who wouldn't be interested in playing over there.  My husband told me, "Don't you think that is not normal for a child to play with the exact same thing every day the same way and never with another child?"  But the school didn't seem to think so.  

They didn't mark the box for greeting, saying hello, or saying goodbye.  I tried to point this out to them that it made sense to me because with Asperger's my husband and my son don't do that, unless we specifically instruct them to.  They responded and said, "No, she would say goodbye if we asked her to.  So, she can do that."  And then they checked off the box.  So funny to us, because we are both thinking, this is the point.  It's not that she can't talk, or do things with others, or say hello, or goodbye, or smile, or look at you, it's just that she doesn't do them on her own.  She has to be instructed.  That is what is different.  But they didn't see it that way.

One last thing, they commented on how "thoughtful" she was because they would ask her a question and they said she would take a while before she answered because to them she was "going over all the possibilities in her head and making sure she said the right answers."  My husband laughed at this talking to me later because he recognized that right away as the processing delay that comes with him and our son with Asperger's.  I suppose it is sort of being "thoughtful" but not in the same meaning as these teachers defined.

So, in the end, they said she did not qualify for anything.  Not that we thought she needed all sorts of special help or anything, but it's just so interesting that their ways of evaluating kids seem to miss all the signs of Asperger's Syndrome.  I figure that is why a child can go undiagnosed for so long.  This same preschool had evaluated our oldest son at age 4 and told us there was nothing wrong with him because he was so smart and his vocabulary was sky high.  

I don't think people understand what Asperger's is.  It seems they are more concerned with not being able to talk or communicate by words and vocabulary more than the problem of not knowing how to communicate. Everything must be instructed.  Sure, Rose will talk and respond more when prompted, but it is always through promptings.  She will go by another child if instructed, she'll hand a toy to another if asked, she'll copy what a teacher is doing, but she doesn't have that social interaction that a typical almost 4 year old would have.  

I am grateful to the preschool and we plan to have her continue in their program so that hopefully she can gain more experience with a group interaction, but I honestly don't see it changing all these traits of Asperger's.  Who knows.  She may or may not have it.  It doesn't change how we feel about her.  It wouldn't change how we act with her.  We know what works, and when we have to give her extra help, or how to quickly calm her down before she has these little meltdowns over the smallest of frustrations.  It kind of just makes my husband and I laugh and wonder how it is that any young kid is ever diagnosed with high functioning autism.  We'll continue to watch her grow and develop.  But my husband believes that someday there will be an "I told you so".

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.

Introducing Asperger's to the 6th Grade Teacher

MJ has skipped a whole grade and was starting 6th grade this year. Skipping grades with Asperger's? It might be extra challenging.

Usually the way things went, we were to supposed to set up or review his 504 Accomodation Plan through the principal, and it is signed by parents, teachers, and student involved. His plan was set to be renewed last May, but the principal was leaving the school and decided it was best to wait to renew it in the fall with the new principal and new teacher. So that is what we were waiting to do.

This time, however, I decided to do things differently this year. In the past we had always met with MJ's new teachers to discuss his Asperger's, but usually it was after the first week of school. It had seemed OK, but things were different this year. Rather than make an appointment to discuss things with the new principal, I decided to go to where things really mattered first. I decided to set up a meeting with MJ's new teacher first, and also, to meet with her before school even started. She was the one who was going to be directly involved with my son, and so I felt it best I talked things over with her first. When we initially set up MJ's 504 Plan, I felt embarrassed, if not guilty, the way it was all set up by the Principal and school counselor. It is all school protocol, but I felt like the teacher was just brought in and told what she was going to do without having much input on the situation. So, I figured I'd at least give the new teacher a heads up on this new student. Plus, it would be nice to see what she thought of everything before approaching the principal for renewal. So, I set up an appointment for a week before school started to meet with MJ's new teacher.

Now, maybe I was going overboard, but I typed up a list of 12 things entitling it "Differences With Asperger's Syndrome Specific to MJ". I mean, I wasn't going to leave any questions unanswered, and I figured it would be a sort of guideline/help for the teacher if any problems arose. I hope it wasn't too much, but here is what I listed:

1-Lack of Eye Contact
2-Difficulty in Remembering Basic Tasks
3-Difficulty in Cognitive Listening
4-Misunderstanding of Social Norms
5-Lack of Emotional Response
6-Inability to Understand Non-Literal Communication
7-Processing Delay
8-Difficulty in handwriting and understanding Spacial Relationships
9-Misunderstanding of Personal Space
10-Problems with Gross Motor Skills
11-Difficulties with Transitions or Change in Routine
12-Difficulty with Communication

Now, along with this list, next to each characteristic I explained what I meant and some of the solutions that we have created for better self management. I explained which characteristics had specific accommodations already set up in his 504 Plan, and also gave a few suggestions of what worked well with MJ.

MJ's 504 Plan had 6 key points:

1-Preferential Seating closest to the teacher
2-Allow extra time on written assignments, or limit the amount
3-Cuing MJ when invading personal space
4-Allowing the use of graph paper for written assignments
5-Cuing MJ when not talking appropriately (slow down, softer, louder)
6-Helping MJ with communicating assignments and getting all needed materials home

Pretty much we weren't going to be changing anything with the 504 Plan Renewal. We were going to one small idea to the last point, but I'll share that idea in my next post.

So, I feel bad. Poor teacher who I basically just bombarded with all this information before school started. Here I am trying to explain to her that our son is "basically normal and like any other kid" but at the same time I am shoving all this bizarre information to her obviously showing that he is not just normal. Maybe I did too much, but I just didn't want to leave any rock unturned and I just decided to give out ALL information instead of just some.

She seemed very nice and accommodating. She seemed to have a good attitude, and she even suggested that we don't even bother setting up an appointment with the Principal until maybe October because she knew the principal was busy and she didn't think there would be any problems.

So, with that, the meeting was over, and we waited to see how this new year would turn out for our MJ.

Super Smart with Asperger's

OK, so much of this is a recap, but if you haven't been following this blog, it needed a little reviewing:

For years we have known that MJ was gifted. It is what we first noticed before anything else. Poor kid suffered bored through Kindergarten then tested into a gifted split program where we put him into another school. We worked through 1st, 2nd, and 3rd grade trying to figure out a place for him.

He was always so super smart, but then all these little things were holding him back. With his Asperger's he has trouble processing things quickly, his handwriting is terrible, and his gross motor skills leave him clumsy and awkward. His organization skills are awful, his short term memory for remembering things to bring home or assignments was not good. His speech was delayed and he mostly stuttered or got stuck on phrases when trying to explain things.

When he was in first grade and the teachers came to us telling us they thought something was wrong, we took him straight up to the children's hospital to have him checked out. MRI's, neurologists, pediatric specialists....in the end it came down to Asperger's. I had never even heard of Asperger's before then.

We were sent to specialists for Asperger's and psychologists to evaluate MJ. Also, the school was testing MJ on his intelligence and motor skills at the same time.

Through all this, back in first grade, along with the diagnosis of Asperger's, these teachers and doctors were telling us another thing---MJ was brilliant. They told me his IQ was "in the genius range", and that he was testing off the charts, but then the problem all came down to processing. There was this huge gap between his intelligence and what he could process. It seemed very unfair. He was super smart, but he couldn't let others see it because it was too difficult to write, or he was too slow or awkward to communicate.

Back then I called the school district and talked to the school asking what we could do to help him. Couldn't we accommodate him in some way so that he could be able to communicate this knowledge and intelligence to others?

I was outraged when the school district told me that it didn't matter what medical diagnosis he had, that as long as he wasn't failing academically, that there was no need to accommodate him in any way.

So, fine. Let MJ be super smart, but let him never be able to show it because the school system doesn't care unless your child is failing.

This seemed like a huge injustice to me. But, life went on and I guess we were lucky that he was still making it in this gifted program. His teacher for the first 2 years knew how to work with MJ and actually by the end of 2nd grade, he was improving some on his handwriting and not stuttering as much. Good for him.

3rd grade proved more difficult. He was demanded much more written work and timed tests which were just too much for a child with a processing delay and physical difficulty in handwriting. I remember trying to work with his teacher and talking to the gifted coordinator trying to find a place for him. It was hard to make a place in a gifted program for a kid with Asperger's. I was getting extremely frustrated, but I had been researching, and talking to MJ's doctors, and they were concerned why MJ wasn't getting any accommodations.

We finally found out the school had a social worker who we had work alongside us in finally setting up a 504 Accommodation Plan for MJ at the end of 3rd grade. Maybe now he wouldn't get so left behind.

We switched schools for the start of 4th grade for social reasons really, but then things continued to not work out. This time it was more academic problems. It was like we couldn't win. He was either bored academically, or miserable socially. Or sometimes both.

Back at the beginning of 4th grade, we met with the teachers, school psychologist, and principal of the new school to discuss MJ and what we could do as far as his Asperger's and how the school material wasn't challenging enough for MJ. (We were back at the regular neighborhood school and right away MJ was far advanced in all the subjects and was questioning why he wasn't learning anything new.) We didn't know what to do and asked about grade promotion.

The school started a series of testing that lasted 3 weeks. MJ didn't mind. He actually likes taking tests. But anyway, at the end of all this, the psychologist told us that MJ was like a kid in 300,000. She said much of what we had heard before, in that his intelligence was that in the "very superior" range, and that he was testing far above his peers, but that his processing was that average to kids his age. (Well, this was good at least---his processing had finally caught up to his peers. But it wasn't right compared to how far ahead he was intellectually.)

But this time it was different. THIS school actually cared about MJ's potential, and they wanted to be able to match his education with his intelligence and not let anything hold him back. So, for the first time, they were going to work with him. They were going to allow him to do extra things, and take certain subjects in the grade level higher to match what he knew.

It was a little weird though. Because they were telling us basically that MJ was brilliant, but they didn't want to skip him any grades, because if they did then they would have to skip him again in 3 months, and again and again....

Now, I'm thinking, what? First off, I would not skip my child again and again and again. And how can they know this or say this? They said he had the ability to "master anything presented him in a short period of time" and so he would just keep going on and on. They decided rather to accommodate him by the split grade thing and giving him time to do more research into things he was interested in , and giving him his own laptop to make up power point projects to present his class.

Well, all was well for a while, but....we were getting into some problems. You take a kid with Asperger's who is very into routine and schedule, and who can't handle transitions, and then you try to have them go back and forth between grades and see what happens when the times don't always match up for math, or he misses part of his regular grades class, or recess time. MJ was coming home with major meltdowns on a weekly basis.

And, although he had this laptop to use, really he was never remembering he could do that, and he was just given busy work a lot of the time to fill in the time he was normally bored.

Socially at first he was doing well at the new school. We thought he had a few friends, but by the end of 4th grade, he was back to being friendless and bored with school. He told us that besides math (in which he took in 5th grade), he didn't learn anything he didn't already know except for stuff about soil.

And now, we also found out the principal was being transferred to another school, and we were worried. What would happen to MJ?

Would the new principal agree with the way things had been done this last year? Would she allow a 504 plan for MJ? Would she decide he should not do split grades and have him repeat 5th grade math all together?

We didn't know what to do. We hated how the school day caused emotional drama for MJ. It wasn't always smooth, and he was freaking out because of the non-routine. They had told us when he got into 6th grade that they wanted him to walk down the street to the junior high school for more advanced subjects. We didn't want that. That didn't seem safe. How would that work out? We didn't want MJ to have to repeat the same subjects next year either. So what could we do?

This is why when we decided to meet with the Principal and school psychologist, we wanted to discuss the 504 Plan to make sure it would be in place for next year, but also we had a separate agenda. We wanted to suggest MJ be skipped into the 6th grade for next year.

Yes, I know what you are thinking. You're thinking, "Are you crazy?! Skip a child with Asperger's a grade where he is going to have one big emotional meltdown and all kinds of trouble?" And yes, maybe we are crazy, but we were finding out more and more that there wasn't a place socially for MJ. We had been going back and forth for so long. We started out trying to help him fit in socially, but then that didn't work, so we moved him schools to focus on academics, but then he failed miserably socially, so we moved him back, and now he was hating life academically. It was like we couldn't win no matter what. And by the end of this year, we were beginning to see that maybe MJ was never going to fit in socially no matter where he was placed. So, should we hold him back for fear of social downfall, when really he wouldn't fit in no matter what grade? Plus, do we torment him by making him repeat subjects he already has mastered, or do we torment him by having his school day all crazy and never exactly set because the separate grades do things at different times?

Really, what could we do? The only resource I've had is that of my husband, a grown up adult with Asperger's, also very gifted, who has lived through school life and is able to give his opinions.

For my husband, school was miserable, and he never really fit in socially. He hated elementary school and was always bored. He says not until junior high did he begin to enjoy school because he was more challenged and the subjects were split into levels more where he could be challenged. He said he always wished he could have been more challenged and skipped grades just to get out and done with school. The uneven school day is a nightmare for Aspies. MJ needed to be challenged and allowed to not have to repeat math and other subjects, but at the same time, it was too hard to have him not have one set teacher and a set schedule.

So, here we were meeting with the school psychologist and Principal who were actually both very surprised this was on our agenda. The psychologist thought it would not be good to skip MJ. She said she could see all kinds of "red flags" socially and emotionally, but at the same time, she said he was not the normal kid. With Asperger's it put a whole mix in the puzzle because who was to say he would ever really get things socially? We were kind of frustrated because she was the one who basically had told us before that MJ should be in college almost, but now she was like how could we even think about promoting him?

My husband did all the talking and described what he felt and shared his experiences. Now, he and MJ are like peas in a pod. They think the same, they act the same, they understand one another. Hopefully, somehow he knew what would be best. MJ was all up for the idea of skipping the 5th grade. He already had mastered math, and reading he is a whiz. Grammar he already knows. Science he is smart in. The only thing really would be history, that maybe we could work on over the summer.

But still, really? Was this a right thing to do? I kept asking my husband if this was OK. He kept saying again and again that it was the only way. MJ needed stability, but he also needed to be challenged.

So, after some consideration, the Principal was to be the deciding judge in the matter. It was the last week of school, and we waited in agony for what the decision would be. I don't know what I feared more, the answer to be yes, or the answer to be no.

Oh, by the way, if any of you are interested, I maintain another blog where I've kept a record of life parenting a gifted child at www.parentingthegiftedchild.blogspot.com. This blog I try to keep focused on our life with Asperger's, but the other blog I focus on our life decisions, trials and errors in raising a couple of smart kids. They seem to intermix a lot though. It seems as if they go hand in hand.

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?

His Obsession? Knowledge!

From all the things I've read and heard, Aspie's are supposed to have some sort of obsession with something. There is usually some subject, toy, game, or sport that people with Asperger's are obsessed with. This is the thing that they will talk endlessly about not seeming to notice when the other person is bored or has lost interest.

With my boys it is interesting. While Thomas seems to have had an obsession with piano, maps and atlases, my husband--computers, but I never really figured out what obsession MJ had. It seemed like his obsessions would change week to week.

Like one week all he wants to talk endlessly about is science experiments, but then the next couple of weeks it's medieval times, weapons, castles, knights, and more. Then another week it is rocks and minerals. Later on it is storms and weather. Or this last week it has been every single detail about fencing. Seriously, he will spend a week telling me every single detail about the "topic of the week" as I call it, and he will follow me around going on and on and on. What are the rules? What are the positions? What are the points? What do they wear? He will let me know everything and by the time he is done I feel like some sort of expert in the subject matter that week.

I've found it very interesting that he has never really had one great obsession like all these books or doctors describe. Why is that?

Well, the answer finally came this past week. We were in a meeting with the school principal and the school's psychologist, and I was mentioning this to her. It seems as MJ has been very bored all this year and keeps asking me when he is going to learn anything new. I've been concerned because he has been coming to me telling me he didn't understand why everything was so simple. He felt like he should be learning harder things. I was describing how MJ is constantly seeking out more information and trying to get his hands on every ounce of new material he can. He's focused on the history channel, the discovery channel, or he's reading everything he can about his "subject of the week". She turned and looked at us and said, "No, I think his obsession is knowledge. It seems like he obsessed with learning as much as he can as fast as he can."

How interesting is that? Seriously, I was shocked that I didn't realize this before because it was so obvious. Obvious, but strange to me that someone could have such a broad obsession. Where that leads us, I don't know quite yet, but MJ is destined for something truly great.

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.

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.