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".

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.

The School Decides on a 504 Accommodation Plan

So, observation after observation went on, and tests, and questionnaires one after another were sent home to us. I felt like it was a little redundant, being that MJ had already been diagnosed by trained professionals and doctors, and yet the school seemed to want to come to their own decision, but I filled them out and sent them back in.

After 2-3 weeks the social worker got back to me and told me MJ didn't really have too many problems with social issues and that he had a lot of friends. This I'm not so sure if I agree totally with because I see MJ as one who thinks he is playing along or kids are playing with him and yet he's not really involved or doesn't realize that the other kids aren't paying attention to him, but oh well, it wasn't a huge deal yet. I was more concerned with the miscommunications and problems that were happening within the academic school setting. She said she had reviewed the tests and previous testing and did see a need that MJ needed some accommodations.

Yay! Finally! I was thinking, yay, he would finally have an I.E.P. But I was wrong. The social worker said she would rather not do an I.E.P. because then he would "have to be labeled as autistic" and they didn't want to "do that to him" (like in a negative tone, like it was leprosy or something). Now, I was thinking. Isn't that what he had? Yes. He has Asperger's. Isn't that a kind of high functioning autism? Or did they not think that and they would think that was wrong? They said it wouldn't be a good idea to put that label on him now, but we might choose to do so when he entered Junior High depending on how things go. OK, so I still don't understand why this would be wrong or not. It's not like we're lying or something, but I guess they felt he shouldn't be put into that category for some reason. I don't think it's like he's going to have a sign around his neck that says "I have autism!", but then again, I guess I am just confused.

Anyway, she tells me they can set up something called a 504 Plan (which I already knew all about and was glad to get it after so long of nothing) that was a way of making up binding accommodations for those with disabilities that don't qualify for special ed services or an I.E.P (Individualized Education Plan).

I was excited to finally have something. She said we would meet later that week with her, the teacher, and the principal to make a list of goals, and objectives to meet those goals.

So this was good! Maybe this would be a start! I spent the week researching and reading up on every legal right that a kid with Asperger's should be allowed in a school setting, and I prepared myself for what I should request when we would meet.

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.

Gifted with Asperger's

Often people have asked us why we don't have MJ in a special school or a separate class. (Of course then there are still a lot of people that don't see anything different with him.) I've gotten some comments even on this blog about how he should be put in a special class where he can have more individualized help.

So----why isn't he?

First off, if you've read our past posts and beginnings, you can know that MJ was originally placed in a full time gifted program. This was something he was placed in because he scored 99% on the tests and ranked within the top 14 kids in the school district.

As we were directed to doctors and counselors to seek out what was wrong, they did a massive amount of testing. At first what came back was how incredibly smart MJ was. The school's special ed teacher explained how he could not even show us the results of some of the tests because MJ scored so high above them that there wasn't even a place on the graph to list him. When we had him tested at the children's hospital for special heath care needs, they told us his IQ was in the "genius" range.

We always knew MJ was pretty smart, but from what these people were telling us, he was super smart. So we know already that he did not fit into a regular classroom. We allowed him to be in this gifted program to fit to his academic needs.

Now, when the school came to us and explained that something was wrong and we needed to get help or figure it out, we were in the gifted program already. He wasn't having problems academically, but the problems were because of shakiness, awkwardness, communication, handwriting, etc.

We are still in the program and MJ has little if any problems with academics. He scores above 99% of the nation through different tests. He reads 200 words per minute. He is very very smart, and so when people comment that he should be removed from the gifted program because he is not up to par, well, it upsets me a little.

I know Asperger's is a little different. It is still a disability. (Now I don't mean this in any way negative because I feel it isn't so much a disability but a different perception on life and thinking and Aspie's are in sort of a culture of themselves.) They allow kids in wheelchairs or deaf or blind to be in a gifted classroom with some sort of accommodations, so I say, what is the big deal to allow a child with Asperger's some sort of accommodations?

He deserves to be in the gifted program just as much as any of his other classmates. So, he has some issues with organization, with speech, with awkwardness, with interpreting non literal things, and then he has a bit of a processing delay, but why should any of these things force him to be put in a special ed classroom?

MJ doesn't seem to fit anywhere. He doesn't qualify for special ed because he is so far advanced that they won't put him there. I don't think it would be a right place for him anyway. We don't want to put him in a regular class because he would be bored. But then in a gifted class he is still having problems not because he isn't smart enough, but because of the speed in which they demand.

The timed tests, the pressure for neat handwriting and fast writing, and the importance of organization are killing MJ. It is not that he can't do any of these things. He just has a bit of a delay in processing, and then he has some fine motor coordination problems that make his handwriting to be extremely unreadable and slow. He can be organized, but he can't remember things very well without being constantly cued.

So---what do we do about it? It is the constant struggle even to know what to do that is frustrating. We turned to the school district right after his diagnosis to see what to do. They told us they didn't care what kind of diagnosis we had, but they would not accommodate any child unless they were failing academically.

So here we were. We had a super smart kid who could do OK in the classroom because even though he was slow, or weird, or had communication issues, or couldn't write very well, he would still be able to score high on tests. But what about letting him live up to his true potential? The specialists told us he scored so super high on all the cognitive and thinking and academic testing, but that his processing level was way below even average. So then what do we do?

The older he gets, the more pressure is put upon him to be faster, quicker, neater, remember things for yourself, understand, etc....

This is why we have been trying to figure things out pertaining to his Asperger's. We do not know what is right or wrong or quite where he fits in. We do not judge any of the teachers or think they are wrong. We just look for an answer and hope there can be a way made for MJ to get the best education he can without so much anguish. So please don't judge us for bad choices or comments we make with this blog. Maybe years from now we'll look back and say it was bad, or it was good, but this is just a journal and a learning experience to us all. Maybe somewhere we could have helped someone else who was struggling with the same issues.

We also maintain a blog relating to being a parent of a gifted child that you can read at www.parentingthegiftedchild.blogspot.com if you are interested in any of those adventures.

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.
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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.

Super Focused---Good or Bad?

One thing that I find really frustrating, is how hard it is to get MJ's attention. A lot of people could think it is an ADD thing that a child won't pay attention and is focused on something else, but it is a little different with Asperger's.

I've had a hard time when I'm talking to him or teachers are talking to him and he is so focused on some picture on the wall, or some glue stuck to a desk that he isn't paying attention. He hardly looks at us when we're talking to him (but that is a story for another post), although I am often surprised when I think he's not paying any attention or listening, but he can recall everything I've told him.

With Asperger's you have a sort of great ability to be super focused on something. It can be great that you can accomplish a lot because you don't lose focus, but at the same time, it can be bad if you are focused in on the wrong thing.

Like, great, you are focused on doing your work, and that's wonderful, but what if you need to focus on something else now?

Or, what if you need to be doing something else, but you are too busy focusing in on some weird design or sound, or something else, that you can't do your work?

It can go both ways. With MJ, one of the comments that had come from the teachers was that he was supposed to be doing his work, yet she could see him staring at the wall for a half hour looking at who knows what and then get nothing accomplished.

One of the tests they did was on MJ's auditory processing. They told us that he had some sort of a right ear advantage that interfered with the way his brain processed things. Basically this meant that he must be cued in before being told anything important.

OK, so I already knew this---I had been dealing with getting him cued in for years, but it was nice to be able to tell the teachers that this was a real medical thing and they needed to touch his desk or make sure that he is focused on them ready to take in the information.

So, hyper focus, good or bad? It can be good as long as directed in the right place and if we can cue him in at the first place.

Tests, tests, and More Tests

For the next little while MJ began taking all these tests. The Special Ed teacher at school was testing him on all his cognitive abilities as well as motor skills assessments and other stuff I'm not really sure of. We also met with a team of pediatric psychologists, psychiatrists, and pediatricians who tested MJ in a number of other things.

Of course, then there was all these tests for us. Well, not exactly tests, but we had to fill out pages and pages of evaluations, questions and answers to what MJ's personality was like, how he reacted to certain situations and a whole lot more.

And, in the meantime, I was researching everything I could on Asperger's. I found out that PDD means Pervasive Developmental Disorder and that Asperger's isn't separate from PDD, but it is a type of PDD which is a form of autism--high functioning that is.

One thing worried me a lot though. Yes, there were all these tests MJ was taking, but a large amount of what they were going to use to diagnose him with was these questionaires we were filling out. What if we didn't answer them the right way? What if in a sense, WE were the ones who were going to make whatever diagnosis be what it is by the way WE answered?

I asked this a lot to the doctors. They didn't make me feel much better, but they said that really if anyone knew our child best, it was us, and so yes, in a way we are diagnosing our own kids, but it is balanced with the doctors findings also.

So.....we continued to talk and fill out forms while they tested MJ's abilities and even auditory processing, and we waited to see what they would say.

Meeting With the Neurologist

We met with a pediatric neurologist a little after MJ turned 7 years old. We sat there while he analyzed different things and examined MJ and waited to see what he'd say. After the hour long examination/meeting/whatever it was, we got sort of an instruction list of what needed to be done.

According to these neurologists, they thought MJ had a PDD (Pervasive Developmental Disorder) or possibly Asperger's Syndrome both of which I had no idea what they were. They wanted us to meet with a team of psychologists and psychiatrists to evaluate MJ.


BUT, they also wanted to do an MRI to eliminate any other possiblilities,

AND they also suggested having MJ relooked at for physical therapy and possible leg braces to correct his gait.

So, we scheduled an MRI for later that month, and also scheduled an appointment with the department for Children with Special Healthcare Needs to have him evaluated for whatever those things were.

The MRI came out clear, not showing any abnormalities, but the other appointment wasn't for a couple months. So in the meantime, I began researching anything and everything I could find about PDD or Asperger's Syndrome to see why they might think our son had it.