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".

Asperger's Syndrome; Hard on a Marriage

Over 12 years ago I met my husband and we were engaged only after 2 short months. We were married 4 months after that. Too short? I wonder sometimes.

I didn't know he had Asperger's Syndrome. Heck, he didn't know he had it. He thought he was just kind of weird. I didn't seem to notice or care maybe. Or maybe we made a good match since he seemed so forgetful and stress free, while I was always so needing to organize, stress, and control everything. Hmmmm...

I don't know which has been more difficult---the time we were married before we knew about his Asperger's, or the time since we realized and accepted it.

Before, we were always arguing. Well, I guess I was always yelling at him not understanding how he could forget to do things so often or not see the need to help me out here or there. Or how could he spend all his time playing video games and lose so much track of time, or why he got so upset with me if I changed something in the schedule. Why did little things upset him so much, yet big things seemed not a big deal? Amongst my yelling, he would always see the need to be better and promise me he'd change, yet it would all be forgotten by the next week.

What a pain I am. Really, I must be the most nagging, mean, and awful wife. Why do I expect so much? Why can't I just accept him and not want to change him? Why am I so pushy? Why did I have to push him so hard to get through college, and get a job and all that? I'm just a mean nagging wife who acts like his mother. That isn't what a wife should do.

I suppose after we figured out he had Asperger's it changed things a bit. I could understand now that he wasn't trying to be lazy or ignorant or mean. He really didn't see the need for doing things, and he couldn't understand his emotions when things didn't go as planned or he didn't understand how I was feeling and what I expected of him. He was trying to not get overfocused on unimportant things, but it was difficult. I knew he loved me and wanted to do good, it just didn't come out the right way.

So, yes, we still had our fights, yet I couldn't get as mad because he wasn't doing things or not doing things to upset me. I still got angry, yes, but what could I do? All I could do was say that I know he didn't mean this or that or that I knew he couldn't handle this or that, but I was still frustrated.

As I wrote in the previous post, I started taking care of more and more hoping it would make things better. Yet, I soon became very overwhelmed and feeling like this was not an equal partnership. I'm sure many little girls dream about when they get older and get married and how they will be taken care of and live happily ever after. Well, my picture of being taken care of was not working out. Why did I have to do everything, plan everything, figure out everything, fix everything......etc...etc? I just didn't want to do it anymore.

I was tired of being stressed because of all the times he was supposed to be somewhere but had forgotten or lost track of time. I was tired of being his constant reminder or sort of beeper to tell him when to come home from work and when to go to the dentist or when to pick up the kids from an activity. I was tired of getting to work late all the time because he hadn't gotten home on time to watch the kids. It was all wearing me down.

Well, he went on a business trip and for a week things were different. Not different for what regular things we had planned, but for this week I was all alone. I didn't have his help or an extra driver for the kids' activities, and I didn't have a helper to get the kids to bed or clean up or make dinner, but yet somehow everything went so much smoother.

How could this be? I had to do everything on my own. But then I realized it---it was because I was in control. I didn't have to worry about him remembering to leave work on time or getting a kid to dance class on time or exploding the kitchen while making dinner. (OK, I'm exaggerating there.)

And all of the sudden I was confused. I was confused with my emotions and feelings of independance. I felt as though I wasn't missing him. I was almost relieved he wasn't there. And what a horrible horrible feeling that was! What was wrong with me? Why would I think such awful things? I knew I loved him, but how could I feel this way?

So, yes, when he came back from his trip I told him some of these thoughts that had come to my mind. I told him I was tired of always having to be the one to call people or figure out what to do when things broke or blew up. I told him I was tired of always stressing out whether he will be home on time or get to an appointment on time. I just didn't want to do it anymore. I'm sure I talked for a long time and probably said pretty awful things, and to my dear Aspie husband, he took everything word for word and very literal. And for me, a non-Aspie, I'm sure most of my words that didn't mean to be literal were all taken like knives to his chest.

What an awful wife I was! And yes, my dear husband was deeply hurt and terrified that our marriage was over. He couldn't understand I would say things I didn't mean.

So, over the next few days all disaster broke lose for he felt the world was over and yet I was just getting over another "fight". Yet, we didn't see eye to eye. He wanted to change. He wanted to be more independent. It was just hard for him. He always had a plan and intended to be places on time, or remember to do things, yet there was always something else to draw his attention elsewhere or it was too difficult to talk to people or talk on the phone. And, yes, I understood these were all things difficult for someone with Asperger's, but it just upset me so. I didn't want to always take care of everything. And, I didn't accept that I needed to. I was willing to help, but I didn't want him to have to depend on me so much. He admitted it as well. And why not? He said I was always telling him when and what. Well, then that was my fault. I was more than a nagging wife. I had taken away his independance. How could he be able to do things on his own if I was always jumping in front and taking care of everything?

So, we talked and talked and talked....and figured a lot of things out. He was very successful at work. He got things done. People depended on him. He met deadlines. He was on the ball! He could do things. So what happened at home? I guess it was a lot me and my over controlling self, but he knew there were steps he could take to help out more or be more on time.

So, as any married couple, we talked and sorted things out, and even talked to a counselor to get our feelings out. It didn't last more than a few days. We value marriage and the committment it is. We love each other and our children. We want to do what is right.

Who is to say that any marriage can be difficult no matter what is mixed into the batter? So he has Asperger's Syndrome. So. I'm sure I have a bit of OCD. So. Maybe that makes us work.

There have been so many "specialists" or "experts" who have written articles about how marriage can't work with Asperger's Syndrome. Well, I think that is wrong. People have all sorts of differences, Asperger's may be one of them, but who is to say it is any harder than another couple that have their own issues? I won't accept it. Although I know we will continue to have our arguments and misunderstandings no matter now hard we try to understand one another, I know we will also continue to work our hardest to keep our marriage strong and love each other. You have to want it. We won't give up or give in to the statistics. And we will work to teach our son with Asperger's to also value marriage and relationships as we have full hopes for him falling in love one day and getting married as well.

For those of you out there working with your own marriages with Asperger's in the mix---hang in there. Sometimes it may feel like there is no hope, but I believe you can get through it if you want it badly enough. Work together. Fight to understand. Strive to accept your differences that cannot be changed, but try to work on those differences that can be adjusted.

To me dear Aspie husband, I know it isn't often you read my blogs, but I do love you and I'm sorry for the bazillion times I say the wrong thing and do the wrong thing. Just as you're trying to understand the weirdness of my neorotypical brain, I'm trying my best to understand yours. Together we can figure things out.

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.

Facing a New Challenge: Skipping Grades with Aspergers

Well, we heard back from the Principal and the decision was granted---MJ was to be allowed to skip the 5th grade all together and enter 6th grade this coming fall.

Although it made sense academically to skip MJ, it was a bit of a social no-no. Really it isn't that great to skip regular kids into a higher grade at times, let alone skip a child with Asperger's Syndrome, someone who was already a social misfit?! How could we?

It took a long time for us to come up with this possibility. MJ was very very smart. The schools and doctors had tested him and shown us even more than we thought at how smart he was. Yet, here was this kid with poor social and processing skills, and who was awkward, clumsy, had poor handwriting, and slow speech, and he didn't always show his smartness right off. It really wasn't fair to the poor kid that he had all this intelligence inside him but could never get it all out in time to prove it.

Over the years as we figured out his Aspergers, we found ways to work with the school to accommodate him so that he was able to show his talents. With his 504 Plan, teachers gave him less written assignments, more oral, allowed him extra time to write, gave him social cues, and little things here and there to help him adjust. It was working quite well mostly, but he was still way above the other kids academically.

We had hoped he would figure things out socially, yet he was not. And with Aspergers, would he ever really fit in the social circle? We hated to see him so miserable and bored both socially and academically. So, we had to choose at least one to be happy in. With Aspergers, who knows if we can help with the friendships and social acceptance, but at least we could help him enjoy school more and feel challenged. They had tried in 4th grade to allow him to go back and forth between grades, but it had been a big mess. Schedules never quite worked out and MJ was always left an emotional mess. We knew he needed to be challenged, but he also needed stability in a set schedule and one main teacher. We agreed to the skip.

But now the worry.....how really would this work? The workload was surely to be more advanced, and would a new 6th grade teacher be willing to accommodate a child that not only had skipped a grade, but had the issues of Asperger's on top of it? And plus there was to be a new principal this year. What if she didn't agree with all these accommodations for MJ?

All summer we worried and waited until it was close enough to school starting that we could set up a meeting with MJ's 6th grade teacher.

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.

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.

Spazzing Out in Public, The Need to Teach What is Socially Acceptable

Most of the time you would think there is nothing different about MJ and that he is just a typical 9 year old boy. But then other times, it becomes terribly obvious that something is, how should I say, a little off.

I don't know what it is, but it seems like being out in public places or at social gatherings just sets him off. It's like he's a wind up toy and someone just let him go wild. He starts spinning and dancing and waving and running in circles. We'll be talking to others as he paces around in circles around us. He'll start talking really fast or popping up in the middle of your conversation with spurts of "that's weird!" or "that's crazy!" and it starts to get a little on everyone's nerves.

Now, I love MJ and he is a great kid, Asperger's and all, but why is it that when he gets around others he goes so wild? Maybe we have just gotten used to his fast pacing and figiting and loud comments at home and haven't cared to stop him. It's not as if he is being bad or anything. We call it being a "spazz".

So, do we try to correct his over loudness, his spinning and pacing around you in circles as you or he talks? Should we tell him he needs to settle down when talking to other people and not talk so fast and long about one particular subject matter following them around until they are ready to go insane?

OK, so I'm exaggerating a bit, but we really want the best for him and so feel it is in our duty to try to teach him what is socially acceptable in the world.

I've sat him down numerous times as well as made comments to my husband about how you need to give and take in a conversation. I try to tell them you can't pace around everywhere when someone is talking to you. First off it is rude, and secondly it will drive them crazy or make them dizzy! I try to tell them that they need to get a feel for the conversation and give the other person a chance to talk or even change the subject after a while. Talk about different things. Don't follow a person around talking endlessly when they are working. It is hard though. MJ doesn't understand why all of this matters. My husband, the older, more experienced Aspie, tends to accept these social rules (outside of our house) and mellow out a bit more in social settings although he still doesn't understand why it makes any difference.

That is the funny thing with Asperger's. There are so many social rules and norms that have to be taught when they may never be understood. You just need to do this, I tell them. And they always question me why. Just because. I guess there really isn't a good reason. Really, why can't people just be themselves in the world today? Someday maybe they can, but for now to succeed in the world and be accepted by peers, they need to fake it.

Asperger's in the Office

Here we are. See my cute husband? It's been an interesting road with him and Asperger's. Many days I'm grateful to it for allowing me to have a better understanding of him and my son. Many days also I am frustrated and annoyed by it.

I don't use it as an excuse and I don't think he does either, but there does come with it many challenges. One in particular we have come across recently is with him and his job.

He has a good job. He does computer stuff. He is a GIS analyst/web developer for an engineer firm. He's pretty smart. He does a good job. He is lucky and unlucky at the same time. His job requires a lot of deadlines which can be stressful, but for an Aspie who can get distracted or want to do something too perfect, it allows him to manage his time by force almost and get things accomplished on task.

We are grateful for his job and that he has been able to get out there and have a working relationship with others despite his social awkwardness at times.

Recently we have found it has it's setbacks.

These past few months he has had a chance to where he could possibly move into his own office at his job. Nothing big and fancy, but it would be a step up and I think he deserves it. Now, he hasn't been with the company too long, but they did make him a team leader and some of the other team leaders have their own office. I think it would be great for him to have his own office to help fend off all those distractions that he gets all day. He could shut the door and get more work done. It would be great!

So we all kept our hopes up and waited for the big bosses to make the decision. His direct boss thought he should have it, but it had to go through the main boss. In the end this is what happened:

His direct boss called him into his office and told him the bad news. He would not be getting an office yet because he just didn't seem like management yet. He didn't portray himself well enough and look like a leader. He didn't look people in the eye enough. He didn't talk enough in meetings or sound sure enough of himself. He wasn't outgoing enough or hadn't spoken up enough to the other leaders so that he could look like he was in a leadership position. He was doing a good job, and he was great and people liked him, but because of all these reasons explained, an office was yet for him.

When he told me all this it seemed like someone saying, "Nope, you don't get an office because basically you have Asperger's!"

I mean, really, everything that was being described about him was that which directly related to him having Asperger's! Now, of course he has never been officially diagnosed, although a group of doctors gave him an unofficial diagnosis themselves off the record, and he has never brought the subject up at work as to not be treated weirdly. But now, being that it has directly affected him at work, we wonder should he bring it up? And if so, should he really go out there and get an official diagnosis?

I don't know if I'm all for the go out and get a doctor to put in writing that he has Asperger's. What would the point be? He doesn't need to be medicated and he doesn't need counseling or what not. We don't have the time and money to be going out to doctors for something we already know is probably the truth.

And, what good would telling his work? I know he is happy to know he is an Aspie at times because it helps explain things in his own life and helps him realize there isn't something wrong with him but just he thinks and processes things differently.

So, for now, we laugh and he goes to work and "acts like he is important". Now don't get me wrong. He is important, and he is a leader, and he is smart, but he must physically and mentally force himself to act more outgoing. It doesn't come natural to him, and he doesn't feel it is something he even understands sometime, but he goes and tries his hardest. Look at those people a little more in the eye. Speak up more. Process more quickly and talk faster even though mentally I know that is frustrating because he hates to open his mouth until he has everything formulated perfectly in his head how he will speak it. Use more confidence in your voice. Look like a leader!

We will see what happens, but for now, I guess life isn't always fair for an Aspie, or at least maybe he can learn to be more like the norm of the world even though it might not be natural. Around our house we tell each other, "just fake it!"

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.

Bluntness-----Keeping Comments to Yourself

Now, MJ is a great kid, and we've never really had any problems with him being tactless or blunt about appearances or if somebody acted differently. In fact, after watching parts of Phantom of the Opera, he still did not see anything wrong with the Phantom when he removed his mask. What an example to us all!

BUT--there comes something with Asperger's that doesn't stop him from telling people things they already know, or questioning them too much.

For example, MJ will be in a class or group and the teacher will want to review something they already learned. Rather than just sit through it, MJ is shouting out comments and raising his hand declaring that they already learned this and so they don't need to teach it again.

Another time might be if a teacher is doing something on the board and makes a mistake or is explaining something that isn't as "scientifically correct" as MJ thinks it is, then he is up correcting the teacher and directing her of what she should be doing or saying.

OK, so he isn't telling people they are fat or ugly, but this other way of bluntness or correcting others seems to get him into trouble just as badly.

I've sat down with MJ and tried to explain that sometimes you just need to keep your comments to yourself. I wasn't getting through to him, and so it was interestingly enough that my husband, Aspie himself, could sit down and explain how he learned.

He said when he was growing up in school he used to sit and comment and correct his teachers all the time and they would get upset with him. He said he didn't understand why they would be mad when he was just "helping them do it the right way" or know what they already had taught, but he learned people didn't like to be corrected if they were not in a position to be. Like if you are the student, or child, then you are in a place to be guided, but if you are the teacher, then it is your place how you are going to teach the class or what or how many times to review.

Of course, as an adult, I know my husband still has issues of this bluntness. As an adult, with other adults, these comments often come out as sounding like negative criticism when maybe they are just random thoughts. He'll often go to another coworker who has a different responsiblity or job and comment on how he would do something a different way when it really isn't his place. He's had a difficult time with this, as I try to explain to him when his coworkers get upset, that they don't want someone else coming in telling them how to do their job. He says, "but I know how to do it better" or faster, or whatever. But it doesn't matter. It is their job to do and they don't care.

I guess maybe it's the world that is wrong and the Aspie that is right. When you think about it, an Aspie personality is just trying to alert the world of all the possible information that they might be missing. Why should it be a bad thing to know a better way or easier or different ways of doing something? Why should it be bad to correct someone if they have made a mistake? I suppose it is all just part of some sort of social worldly rules that try to get us all to have more tact and not step on other people's toes.

So what really is better? Be honest, or just let people do their own thing? I suppose it is part of a not being too honest thing, and is it really going to be that big of a deal if you tell them or not? And sometimes, even if you can do a job better than someone else, stick to your job and let them do it themselves unless you are asked to help or they blow something up.

Nods, Hops, and Jerks

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

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

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

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

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

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

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

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

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

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

Loudness and Social Behavioral Differences

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

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

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

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

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

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

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

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

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

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

Being Literal--Say What You Really Mean

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

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

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

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

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

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

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

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

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

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

Speech Therapy and Inability to Summarize

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

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

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

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

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

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

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

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

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

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

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

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