Our Life with Asperger's

Latest Articles in this Channel:

11/20/11--11:33: Super Smart with Asperger's (chan 2207123)




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.







11/20/11--11:33: A Peek into the Mind of an Aspie (chan 2207123)




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

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

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

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

Then I turned to the next page.

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

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

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

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

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

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

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







11/20/11--11:33: Changing Schools for the Better? (chan 2207123)




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

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

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

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

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

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

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

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

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






11/20/11--11:33: Watch Out, This Parent is "VERY Assertive!" (chan 2207123)









Look at my cute little baby boy.  

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




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




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




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




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




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




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




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




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




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

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




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




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




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




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




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




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






11/20/11--11:33: Forgetting to Follow the 504 Plan (chan 2207123)






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.












11/20/11--11:33: Preschool Evaluation for Asperger's? (chan 2207123)









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".






11/20/11--11:33: Biting?! (chan 2207123)






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




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




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




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




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




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




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




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




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




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




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




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




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




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




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




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




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




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






11/20/11--11:33: Why Should It Matter? Telling A Boy About His Asperger's (chan 2207123)




Here's my cute MJ. 11 years old with Asperger's. In my last post I was all concerned about MJ really understanding what Asperger's is all about. I sent my husband, an Aspie himself, to go down and have a heart to heart with my son and let him know what really was up and how it was going to affect him or not as he got older.

OK, now, I received a few comments, and I'm hoping that I didn't come across the wrong way, because I don't think of Asperger's as being something "wrong" with a person. I have always embraced it's characteristics as unique traits rather and not misfortunes or problems.

Now, true, my idea was that my husband was going to go talk to my son and just kind of say something toward, "You know we have Asperger's, right? Well, let me explain a little more in detail about what it is or why we don't get things all the time...." or maybe some kind of conversation about how life might be challenging for us but we can overcome it.....etc....etc...

But did that happen? Well, no. My husband came up and I asked him what happened. He said he made MJ cry. Oh, no. That's not good. But when I asked what he said, it wasn't the ideas that I had imagined. He said he didn't really mention much about Asperger's and he just talked about how school was really hard for him and he didn't have any friends and it was ugly and how MJ would be going to junior high soon and things were probably going to be hard and teachers probably weren't going to care as much....and how MJ was going to probably struggle to make things work for him.

So....hmmmm.....really, did this conversation do any good for MJ? Hmmm.....I think maybe it just freaked him out a bit more.

But then, really, what was I thinking anyway?

We recently decided to establish a support group for people with Asperger's or those who have friends and/or family members with Asperger's (which I'll go into more detail on in another post). At one of our meetings we met a gal who had been diagnosed with AS at age 19. I brought up this discussion with her saying how I had always explained Asperger's to my son as "You know how your brain is wired a little differently, you know you and dad...." and then how I would explain how he didn't quite get something and what or how he should have acted or responded. And this awesome gal said to me something like, "Why? Why do you need to say that in the first place?" Basically she told me that I didn't need to be starting all these conversations trying to explain why he was acting different than someone else or why he didn't figure something out, but all I needed to be doing was just stating the situation that went wrong, telling him it's not appropriate, and then showing him how to correct the situation, or teaching him how to act next time.

This was very eye opening to me. Really, why do I have this need to have to tell my son or husband that "Gee, I know this is because you think differently or this is because you have Asperger's....." I mean, I guess I just felt this need to make sure my son didn't feel bad or I didn't want him to feel like there was something wrong with him that was his fault. But really, the world just wants people to be normal, and if any other kid of mine did something inappropriate, then I would just stop them, correct them, and teach them. Why should it be different with someone with Asperger's? Yes, they may be different as far as processing things differently, and not picking up on things as easily as another who learns things more intuitively, but why should that matter? They can still learn and try.

So, while I was once concerned about this need for my son to be more knowledgeable about his Asperger's and what to expect as he gets older, really, why? All I really should be doing is teaching him, guiding, him, and doing my best as a mother to prepare him for the future, for growing up, and going out into the real world on his own.

I say so much that Asperger's is not a disability but just a different way of life, but I've got to truly understand that myself and show that better by correcting my words and truly accepting my kids and husband, Aspies or not.







11/20/11--11:33: How to Tell Your Kid About Their Asperger's (chan 2207123)




OK, so as you have read in my last few posts, we have kind of been having this struggle trying to talk to our son about Asperger's Syndrome.

Yes, I had all these ideas at first about how his dad should go talk to him because he also has Asperger's and it would make more sense coming from him. But then what I had in mind didn't really manifest as my husband talked about how hard life was going to be and how miserable junior high was going to be, and basically I think he just depressed the boy.

Then of course I learned a little bit to think why does it really matter that we tell him he has Asperger's. Rather, just help him to figure out how to overcome any struggles related to it.

Well, anyway, my emotions continued to be mixed, and I still felt like I was somehow doing some sort of injustice by not fully explaining his condition to him.

We watch the show on NBC called Parenthood. If any of you have not seen this, it's partially about a family who has a son with Asperger's. The show has been interesting. I think they do a pretty decent job in showing the characteristics of Asperger's, but then I often disagree with the way they let the son sort of rule the house on the show. So, mixed feelings there, but on the show, the parents kept the boys Asperger's like a big secret and they didn't want their son to know. One day he overheard and found out he had this thing called Asperger's and wanted to know what it was. Anyway, on the show, the doctor and the parents had this idea of how to explain Asperger's in a more positive way by describing not just the challenges, but what strengths there are associated with Asperger's Syndrome.

Well, I thought this was a great idea, so we all sat down at the table and I started to talk to MJ. I said, "Hey, did you know what you can do that maybe others can't do so well?"

Of course, this is where things turned sour. For every strength that I began to list, my husband (who obviously must still think there are no benefits to having Asperger's) would put out a "but" or "well, not exactly..." or other kind of comment that was tearing my pro list apart.




"Did you know that you and Daddy both have really good memories and can remember tons of details about things?" And then my husband says, "Well, only about stuff that other people don't really care about."

And then I said, "Did you know that you guys are really smart and have this whole database of knowledge and that you can remember all kinds of facts and figures better than most people?"
And then of course my husband chimes in, "but it's usually only about things that no one else is interested in...."

OH! I just wanted to smack him! And yes, I gave him "the look" a couple of times, but of course a man with Asperger's is not going to understand "the look", so that did no good.

But I tried to go on with several pros about having Asperger's as my husband was all negative, but hopefully I got some positives across. Then with the positives, I slowly began describing some of the challenges about having Asperger's.

I talked about how it was a little more difficult to know when other people were finished with a conversation or how to understand what they were feeling. We talked about how they had to work a little harder to look and respond to people, or how they didn't always understand certain jokes or "looks" that people give. We talked about how they didn't always understand the reasons why they had to behave certain ways or not talk about certain things in public, or why their clothes had to match or other things.

Overall, I think it went over very well. I'm sorry that my husband must have had such a difficult childhood to be so negative about any benefits of having Asperger's, but we really want MJ to have a different experience with the whole thing. We don't want him to grow up thinking these things are wrong with him, rather that he has strengths and weaknesses just like anybody else, and everyone has to overcome their weaknesses in different ways.








11/20/11--11:33: His Obsession? Knowledge! (chan 2207123)




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

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

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

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

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

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










11/20/11--11:33: Special Ed? (chan 2207123)




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.







11/20/11--11:33: Should You Tell Your Child They Have Asperger's? (chan 2207123)




The years are going by. MJ just had his 11th birthday.
11.
Next fall he will be starting Junior High School.
He's not a little kid anymore.

So, when should we really sit down and have the "You Have Asperger's" talk? Or should we?

OK, now as MJ was first diagnosed with Asperger's when he was 7 years old, he knew something was up. I'm not sure he knew or understood what that something was, but he knew. We've never necessarily hidden anything from him, although I have often chose to talk with teachers and doctors without him in the room as to not make him feel awkward. But, as he has gotten older, I slowly started making him aware that he was a little bit "different".

It seems weird that I am saying this, but thank goodness my husband has Asperger's so that I can somehow connect someone else to him and he can see that it's not some death sentence or anything. About the time MJ was 9 years old I started telling him how his brain was "wired differently than other people". He knows the word Asperger's Syndrome, but the way I explain it to him is that his brain works a little differently and he processes things a bit differently, and there is nothing wrong with it, why his dad has the same thing and thinks the same way and he does OK.

So, this has worked for a while, as we often sit down at the table and have our "Social Teaching Sessions" where I help explain to both my husband and my son what happened during a social event that we just attended that they didn't quite get, or it's where I might explain to them why they were not accepted appropriately or they didn't respond the "socially acceptable" way.

Now, really, I love my boys and I honestly cherish many of their Asperger traits, so I will tell them a lot of the social rules are just plain dumb, but it's the way most people do things and it's just something they have to learn, but I never tell them they are bad or wrong exactly, I just try to show them other ways to behave or respond in certain situations and I try to explain what they can do in circumstances where they are probably not going to understand or figure things out. I'll explain more in detail about some of our "tricks" to overcoming social misunderstandings in another post.

However, things have been getting difficult lately. I don't think MJ quite understands what Asperger's is exactly and I don't think he realizes that it is a part of him that isn't going to go away and that he needs to accept it and figure out how he's going to deal with it in life.

But how do you do this? I mean, how do you sit down your kid and tell them there is something "wrong" with them without telling them that there is something wrong. Does that make sense even? I don't think Asperger's is something wrong, and I honestly don't consider it a disability. I have always said it is just a different way of life, but as my husband, an Aspie himself, tells me that it is a disability, yet it is something that can be overcome. He has struggled as a boy growing up always knowing that he was "weird" or something was wrong or different with him. Why didn't kids like him? What was it that he couldn't figure out? He thinks of his Asperger's as a true disability, but it's not something that is going to stop him from succeeding in life. He finds ways everyday to overcome or challenge his Asperger traits. It's like trying to live normal.

Well, I told my husband that I couldn't do it. I'm the one who has been talking this all up for years trying to gently tell my son that he has Asperger's but it's no big deal because Daddy does too, and they are both just different, but I don't think he is getting it all the way. He knows he has different struggles that other kids don't, but then much of the time I think he may even think it is just funny the mistakes he makes. Who knows, but I told my husband that he needed to be the one to talk to him. It wouldn't be right coming from me. If anyone was going to sit down and truly tell another person that they have this syndrome, or this disability, wouldn't it be best coming from someone else who has lived with it all their life and really understands what it means and how it affects their life?

So, as I'm typing up this blog, my dear Aspie husband is downstairs having a heart to heart with my sweet, talented 11 year old son who also has Asperger's. Yet, this may be the first time he really hears everything it entails.






11/20/11--11:33: Too Dependent with Asperger's? Have I Taken Care of Too Much? (chan 2207123)




Here's a picture of our little family all wind blown at the park. We look all perfect and happy, don't we? I'd like to think of us that way. I think we function alright even with the quirks and drama that Asperger's can bring sometimes. We've figured out how to make things work or how to be more understanding when they don't. I've seen how my husband has been able to make a life and be successful with Asperger's, and so I've gained hope that my son can do just as well.

However, recently, we've had some struggles.
Our relationship has always had it's challenges. It seems like the first years of our marriage were full of so many fights about how I couldn't understand why he couldn't remember anything or see the need to do this or clean this, or I would get so frustrated when he would get so upset over little social things that I didn't think were such a big deal.

When we figured out that he probably had Asperger's (according to the professional opinion of the team of doctors who were diagnosing my son), it seemed to open up a whole new light and understanding to our relationship. While I would still become frustrated, I knew many of these characteristics or things that were upsetting me were not actually being done to be mean, or hurt, or the result of a husband who didn't care. He did care, and he did want to do better, but there always came so many obstacles.

He wanted to remember to take out the garbage or do the dishes or pay the bills, but he always forgot, or rather he would get distracted and absorbed into some other activity that he lost all track of time. He wanted to take care of things on his own, but he didn't know how to begin if the job seemed too large. He wanted to be able to deal with social situations, but often gave up because he didn't know how to react, respond, or he didn't understand what others were thinking.

So, maybe it was may fault. Maybe it's because I'm such a control freak. Maybe it's a good thing that an OCD control freak got married to an Aspie. Maybe that makes us a perfect match. But for an instant this past month, I wanted to throw in the towel. I mean, to me it seemed like our whole married life I was this big nag. All I did was constantly remind my husband that he needed to do this and that and how and when and why. I pushed him through college, I helped him find a job. I took over the finances when he kept forgetting to pay the bills. I gave up on him not helping around the house because of his lack of knowledge and sense of not knowing where or how to begin a job. I stopped giving him any sort of responsibilities involving the kids because I was tired of them being late or missing events. I stopped working during the week and moved my shifts to the weekends only so that I didn't have to worry about homework not getting done when left to my husband.

OK, so this sounds terrible doesn't it? He does do a lot. He has his good job that he does well at and he is smart and funny and honest and caring. Yet, I was just so tired and overwhelmed. I think I just didn't want to deal with it anymore. Why did I have to do everything? When was it going to be my turn to be taken care of? This is how I felt. I just didn't want to do it anymore.

I started to think about our son and how I always had such hope for him to be on his own, but now all of the sudden I was seeing a different picture. Instead of seeing a future where MJ was going to make it on his own, I was seeing a future where he couldn't possibly do it on his own without the major help of another. Would he be able to get out there and do things on his own without me there to constantly cue him or remind him or tell him how to do everything? As I sat here and looked at my spouse, I was beginning to get very worried.

It must be my fault. I've enabled him in sort of a way. Maybe if I just stopped doing everything then he would have to take care of it on his own. But did I dare? I was afraid the bills wouldn't get paid, kids wouldn't get their assignments done and the house would go to pot. How could I? I guess I didn't really want to give up all control, but I just wanted the feeling that I could if I wanted to. And maybe I just wanted a little bit of help. Some relaxation time. Something.

And maybe I wanted the feeling of knowing my husband could choose to do things on his own without my suggestion. Wouldn't that be nice?

Or look at me? I've sort of developed into a rambling fool! It's probably again my own fault, but I have developed this awful problem where I can't stop talking. With Asperger's, there is a sort of processing delay where the person must stop and process everything before they speak. I often am very impatient and can't handle the long pause after I ask a question or talk, so I will just keep on talking.

I wanted to be loved or surprised or not have to specifically tell my husband of what to do for me on my birthday or a holiday, or how to show me he loved me. It didn't seem so special when I'd been the one to suggest an activity or action.

All these things overwhelmed me and I felt so frustrated and alone. I didn't know what to do, and I didn't like the way I was feeling.

Frustrating as it was, I confronted my husband one night, and as many things I said came out too literal, my poor husband was terribly devastated.

(Sorry to leave you hanging here, but I'll continue in another post. Don't worry, everything gets worked out somewhat.)








11/20/11--11:33: Finally Friends? (chan 2207123)






MJ might seem content always reading his thousand page books or whatnot, but I know he needed some friends. School had been hard the last many years with him coming home looking so sad and defeated, telling me that he just wandered around on the playground all recess but no one would play with him.




Now, I know part of this problem stems right from his Asperger's in that he doesn't want to do what the other kids are doing. He's always telling me that they were playing kickball or this or that, and he doesn't want to do those things. I've tried to explain to him that you can't always do what you want to do, and sometimes you have to join in the other kids with their games, but it does no use. He is pretty set in his decisions of what he likes and dislikes, and he does not want to change.




Anyway, as we switched to the new school we had high hopes that this change might do MJ good. It would give him a fresh new start with now 100's of kids to find friends from. So, did it work?




The first day of school the kids came home. "So, did you make any new friends?" I asked.




"Yeah, I have 2 friends and we play at recess together." MJ tells me. "They like Pokemon and we talked about Pokemon cards and battles."




Oh, the joy that brought to my ears. Yes, I know it sounds sad, but it's taken 4 years to hear that my son has friends. I was surprised though, and a little hesitant to accept it as reality just yet, so I waited and asked him every day that first week of school. Still by the end of the week he was listing the same 2-3 boys names and it seemed like a real deal!




How could it be so easy now? It astonished me that it seemed so natural and easy. What had been the problem before? Or were these really friends or just a new group of kids that he had nominated to follow around? I worried a little being that he used to list all these "friends" at the previous school, but yet I knew they were just humoring him for several years not really including him in their true friends circle. Hopefully this time was different and this would be a new start for MJ. He was a good kid and although he might be a little eccentric, I think he could still be a good friend.






11/20/11--11:33: Friendless with Asperger's? (chan 2207123)







It's been a rough road, and although MJ is a pretty good kid, he hardly has any friends. Sure, he's got so called "friends" who he follows around or tries to include himself in their already established activities. When he goes to school the kids say hi and some may even talk to him. Some of these "friends" are pretty nice and let him tag along after them, but really, he doesn't have any close relationships with anyone. The kids that let him tag along or talk to him are more just humoring him until someone they would rather play with comes along.
Yeah, this sounds harsh. It may sound like I don't have much confidence in my son to have friends, but it is a reality. He just doesn't.

And why is that? What is wrong with him? I mean, really, he's a decent kid. He's pretty nice. He's smart, imaginative, and funny. He's interested in those Pokemon cards and Star Wars and such like the other kids. Yeah, maybe he hates all sports and would rather dance, but not all kids have to be into sports anyway. So what is it? Why don't the other kids want to play with my kid?

Often as I have picked him up from school he comes out with his head down and looking like school just sucked the life out of him. He says he is lonely and bored and he has no one to play with at recess. I ask him why and what are the other kids doing, and he tell me the same response, "I don't want to do what they're doing."

That's it, isn't it? With his Asperger's he is usually only interested in what he wants to be interested in and could care less about other things. If the kids don't want to do what he wants then he doesn't want to play with them. On occasion he actually can find kids that are interested in the same things, but then they don't want to play the exact way he wants and it is over.

I've observed this early on in his life. When he was 2 years old to 3 I tried to play action figures with him. I thought I was a good mom sitting down playing star trek guys or Buzz Lightyear, or whatever the action figure was at the time. The problem arose that he didn't want to play with me. It's not exactly that he didn't want to play with me, but he didn't want me to have any input in the playing. For example, he wanted his action figure to go on some trip and fight the other action figure, then fly through space and land on the moon (and that was fine), but when I thought my action figure could talk or act in response to his guy it wasn't good enough. He would become angry that I wasn't doing exactly what he wanted my guy to be doing. And how did I know what I was supposed to be doing? It was as if there was some script he was following and I was missing my cues and lines. I remember I pretty much gave up playing like that with him long ago. Everything he plays is very imaginative, but it's all scripted and planned out to how exactly he wants it or sees it in his mind unfolding.

So, sure, other kids might want to play with him for a time, but when they can't have much input on anything, they get pretty annoyed, or maybe bored. At home MJ has had it easy with younger siblings to order around telling them exactly what they will do next, but at school kids don't want to be directed as much.

Yeah, maybe he can just play games or that Pokemon card thing he does. This has worked at times. I've organized play dates with other kids to come to our house and for a while they play happily battleship or air hockey, but then he brings out his Pokemon cards. Sure, they may be interested in them, but the way he begins obsessing on every single rule, category and whatever about them, the other child gets really bored and doesn't want to play anymore. If it's not Pokemon cards, then he'll want to start talking about rocks, minerals, bugs, chemicals, etc. and the poor kid who just wants to blow up action figures begins thinking what is wrong with this kid? I've had many a playdate where I am instigating all of the activities following them around just to keep the other kid entertained because they usually end up sitting alone apart from one another playing totally separate things.

So what to do? I want MJ to have friends. I don't want him to be alone. I've talked to my husband about this and he's pretty negative. He says this is just the way it is with Asperger's. It's not that you don't want to have friends, you just don't know how to make friends, what to say, or how to act around them. It's like you are outside this happy bubble of laughing playing kids and you just can't find a way inside no matter what you do it's always wrong.

Well, one thing I could do is enroll MJ in various groups and after school activities that involved other kids. He's in 2 dance classes, cub scouts, and I put him in a summer camp this year. Maybe he wasn't going to have friends exactly, but at least he would be involved with other kids to feel as if he belonged to something.

In the end, we actually took this problem with socialization to a whole new change. After all the work we've done with his school and even finally establishing a 504 Plan, we gave it all up and decided to transfer him out. We made a last minute decision to pull him out of the school he'd been at for the last 3 years and take him back to our neighborhood school. Yes, we had had our problems there, but we had also finally established accommodations for him there. He just had no friends and we needed a change. We hoped for the best and met with the principal to register the day before school started.








11/20/11--11:33: Swimming Lessons, Asperger's, and Awkwardness (chan 2207123)




A kid with Asperger's Syndrome isn't always the most coordinated kid in the world. A lot of the time their movements come out just plain clumsy and awkward. At least this is the experience we have had with our oldest son with AS.

When MJ was younger he was constantly tripping and falling when he ran. He has walked on his toes since I can remember, and it does not help with his coordination much. Yes, we tried physical therapy and casting and constant reminders (which we still do), yet, this boy is set to walk on his toes! So frustrating sometimes!

Anyway, MJ's balance isn't always the best, and his reflexes don't respond as quickly as one would like, and so it kind of put a damper on anything sports related. Maybe that's why he hates sports so much. We tried him in T-Ball, Soccer, and Gymnastics, but he hated them all. He was either too afraid of heights or afraid to jump and climb, or he just couldn't connect with a ball in time to enjoy it.

So what if he doesn't do well in sports we thought. He doesn't have to. Although, one thing we knew he did have to learn was swimming. Yep. Swimming lessons. There was not a choice for this one. While I don't care if I have any Olympic swimmers, I at least want each of my kids to be able to swim well enough for safety purposes.

So, we enrolled MJ in swimming lessons way back when he was around 5 years old.

It did not go well. Well, maybe the 1st year he was OK, just getting used to the water and all, but then when we tried the next few years it was not good.

At 6 and 7 years old, MJ was still in the basic beginner level. At 8 years old they tried to move him up to the next level where he just about drowned and it was so traumatizing for him that he didn't want to take lessons ever again.

At 9 we tried again at a private pool. Still, things were not going too well. OK, I lied, this is when he finally mastered the back float and the back "monkey airplane shoulder" thing. Hey, I suppose he could just float on his back and not drown, but he still couldn't tread water, he couldn't do any kind of front swimming besides doggy paddling. Hmm....

OK, this summer MJ is 10 years old. Now I'm thinking back to when I was 10 and I don't think I could swim any better, but kids now a days are more advanced. At least where we live. Most kids by age 8 already know how to swim and can swim across a pool. (How do they do that?!) I mean people are putting their kids in swimming lessons even before they are out of diapers!

Anyway, back to the point---Micah is 10 years old and needs to learn how to swim, but I've got to put him in "Beginning Level" swimming lessons once again because he cannot tread water and he cannot do any front crawl or swim forward for so many feet (whatever they require).

So, yeah, my poor little 10 year old that has to go be in a class full of 6 and 7 year olds who can swim better than him.......(Thank goodness he is short for his age, and thank goodness for his Asperger's that makes him more unaware of social things to even notice or care that he is older!)

So, how would he do?

I've sat for 2 weeks again watching and hoping while MJ half drowns in the water. Will he ever get it? I know he is trying, but it's like his movements just aren't as flowing as the other kids, and while they are gliding and floating, he is sputtering and sinking. It's been 3 years with him in this same level, and I don't think he is ready to move up.

He came to me a couple of days ago crying that he was just scared and he couldn't do it and he didn't want to continue swimming lessons.

Now, what do I tell the kid? It's not really a choice to learn or not, but what if he just can't get it? I mean, as a swimmer I totally suck. Really. I think I never got it either. I think I got to his level in swimming and never got past it. EVER. Sure, if someone throws me into a pool I can get to the side, but I can't do the freestyle, or backstroke, or dive hardly. I can barely tread water for very long. I suppose he can avoid water his whole life.....but how will that help. He's got enough social problems as it is not needing to add "can't swim" to the list.

I told him to not be scared, that the teachers and life guards are there to help him, and just to try his best. Just try. You can do it. Talk to the teacher, ask for help.

On the last day I finally saw MJ jump in the water and swim the width length of the deep end pool somewhat front crawl swimming to the other side. He didn't stop. He didn't drown, he didn't even doggy paddle. He made it! Hooray! Maybe he was finally getting it!

Well, today was the last day of swimming lessons when they evaluate your child and tell you what level they should do next time. And what did they say?

Yep, still not passed. Poor kid will have to repeat this level yet again next year when he is 11 years old!

But, you know, this is all dumb I think. MJ doesn't care that he is 10 and can't swim while all these other kids can. So what! So what does it matter that a younger kid can swim better. So? He is getting better and things are finally connecting. He just needs practice.

I wish I could have the mind of an Aspie just once. All us "normal" people are always so worried about matching up to everyone else and doing what is considered socially acceptable. Someone with Asperger's doesn't make sense of it or even notice the differences. Sometimes I think we could all be a little better if our minds were wired with a bit of that Asperger wiring.

Well, here's to another many many more years of swimming lessons!







11/20/11--11:33: Another Aspie? Patterns and Early Signs of Aspergers (chan 2207123)




This is our youngest daughter, Rose.
She will be 3 years old in a couple of weeks.
She has always been a little more solemn and reserved than the other kids.

When it is your first child, you might not think anything of it, but when you have already had other kids and you have seen the difference in a child with Aspergers and a child without, things will become more apparent.

Now, we don't know for sure that this little cutie has inherited the Asperger gene, but there seem to be so many signs. She seems so similar to her oldest brother with Aspergers and even more strongly in some characteristics.

From very early, even 4 months old we began to see some signs. I remember going into her room and seeing her in her crib with all her dolls and stuffed animals lined up exactly every 3 slats inside her crib. It was weird. It was so meticulous to detail.

As she began crawling we would see new patterns created in her room. All the books and toys would be arranged across the floor in rows and squares and lined up.

Now, we're not saying this is a huge deal. Many kids out there like to stack and line up toys, but it is just something a little almost obsessive about the way an Asperger child will arrange things. They don't just play with the toys, they seem to pose them all and they have to be a certain way or else the child will get really upset. I remember my oldest freaking out because he needed all his action figures posed in an exact way or else he would become so upset. He was only 18 months old but was so upset because I couldn't figure out the exact millimeter of degree that a startrek figure's arm was supposed to be pointing.

Everywhere we go little Rose will line things up. In nursery classes the teachers are astonished and take pictures with their cell phone how bizarre it is. They showed me one day a picture of how she had taken every doll out of the toy sections and lined them up across the entire play area from one wall to another.

I wish I had a picture to show of that, but here are just little instances of her patterns that I have caught:



Above, lining up the snappy dolls....and below what she does with magnets on the fridge:





It is funny because whatever she is doing she has all mapped out in her head and if you were to move one of those magnetic letters she will freak out screaming and crying until it is exactly back to the way it was.

In many ways we have seen the signs similar of her brother. She doesn't respond to others very often. She has always been so solemn around others; hardly smiling, not talking so much, we have to instruct her to say hello or goodbye or things like that. There is little emotion.

She plays so much more alone and by herself. She has everything all worked out in a sort of play or storyline when she plays with her toys.

She walks a bit on her toes like her older brother. We hope that will not continue. It has caused a lot of problems with her brother.

She gets easily upset by change of plans and transitioning from one activity to another.

She gets very upset about different textures or when clothes aren't fitting a certain way.

We just kind of sit back and observe and wait to see what comes of her personality. It's not a big deal to us because she seems so much like her siblings, and she is such a cute girl. It is only when we are out around other kids her age that we see such a dramatic difference. The other kids are so bubbly and talkative and then she is just staring blankly into space while their parents look at me and think something is weird with my child or that she must be so much younger than she really is.

Well, at least we know how to work with Aspergers and how to make sense of their world somewhat. It doesn't scare me or make me feel bad that another family member might have Aspergers. We just take things a day at a time and we know maybe this time we'll have more knowledge to help us have a better understanding.







11/20/11--11:33: Introducing Asperger's to the 6th Grade Teacher (chan 2207123)







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.








11/20/11--11:33: Using a PDA for help with Asperger's (chan 2207123)







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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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







11/20/11--11:33: Check out my articles on Examiner.com (chan 2207123)




Hi everyone, just wanted to let you know I have been offered a job as the Asperger's and Parenting Examiner for a local online news website. I've added a sidebar that lists the latest articles I've written. I will continue to maintain this blog to share our personal experiences and ideas about Asperger's, but if you're interested in more of the how to, basic info, or possible experiences with Asperger's, then check me out at the Salt Lake City Examiner.com under Family and Parenting. You can see my page here.







11/20/11--11:33: Facing a New Challenge: Skipping Grades with Aspergers (chan 2207123)





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.







11/20/11--11:33: 5 Hours of Homework!? Searching for a Better Plan for Help with Aspergers (chan 2207123)




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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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







11/20/11--11:33: Asperger's Syndrome; Hard on a Marriage (chan 2207123)




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.






11/20/11--11:33: Extreme Separation Anxiety with Asperger's? (chan 2207123)




This is Rose, our cute little "baby precious" as we like to call her.



As we've commented on here before, it seems as if she has many characteristics similar to those of her oldest brother with Asperger's.

She's always been more solemn and reserved as compared to other kids her age.

We've described her eccentric behaviors in lining things up and creating patterns with toys, books, and magnets. We've noticed she doesn't talk much to anyone but us.

Funny as it is, she used to have what we called "the look of death" in which she would give anyone who talked or looked at her. This was from a very young age. So funny as it was, but a little embarrassing when you have a small child who gives strangers this look when they only give her a smile. It made professional portraits impossible as she would give this look to them and never smile. Don't believe me? Well, here's a proof shot from a portrait sitting we were trying to do:

I laugh when I see this picture, but it's true, it was the "look of death".

Anyway, we have continued to just sit back and watch as she has grown older wondering if this is actually our 3rd family member with Asperger's Syndrome.

As she turned 3, she continued to keep to herself and not give much interaction to others. We would sit in the waiting room during her older siblings' dance classes and watch other children her age play and laugh while she would stay right by my side and not say a word. Other parents would ask how old she was and be surprised when she was often older than their children who were so bubbly and social while she would sit quiet and staring for the hour.

It's no big deal. She's just shy? Maybe she'll grow to be more social?

As you can see from the top picture, she can smile and she does interact with us at home, but it's like it's a whole different world to anyone outside of our own family.

I've noticed for the last while that while she does show emotion, it is often mirrored or copied by someone else. She will look at me and copy the expressions on my face. I could be talking about how she is going to have to eat vegetables and go to bed, but if I have an excited happy look on my face, then she will react by using my same expressions. She will mimic her brothers and sister in their emotions as well.

Is this normal? I suppose so.

I know she has all sorts of issues with textures as her brother did. She can't stand wearing all sorts of clothes. She used to freak out if her hands were dirty.

Anyway, no big deal, but recently we are having a huge issue, and it isn't something that was a problem before.

Separation Anxiety.

Now I know that is pretty common for young kids to go through, but usually that is when they are 1-3 years old. Rose is going on 4 and it just started about 2 months ago. She used to go to church class or extended family member's houses or neighbors/friends just fine. But then all of the sudden she won't go to anyone. She won't go to her class. She won't go to neighbors houses. She won't let anyone hold her except for my husband or I.

What is the deal? We can't exactly pinpoint any huge traumatic event, but she is just freaked out. It's not just a little thing. We sit with her in class and then try to leave and it isn't just a little tantrum she throws, but full blown screaming bloody murder like she's going to die or we're never coming back ever.

I don't know what to do. We've tried everything. We've tried explaining what's going to happen and that we're coming back. We've tried everything from punishment to rewards and even bribery to get her to go and stay where and when she's supposed to (church class, babysitter, etc.), but she is just not getting any better. I used to think she was just testing us to see what she could get away with, but after 2 months I can see it is not an act or orneriness, but she is genuinely scared if not terrified that we are not returning.

What can we do? It is really becoming a problem. It has become so bad that she will constantly "check in" all day long at home to make sure we are right there. If she hears a door open or close she will cry out panicked, "Mommy?!!!" If I go around a corner she will do the same. If we go anywhere in public she will cling to our leg at all time as not to lose us. It is just so extreme.

We continue to reassure her that we would never leave her and we will always come back, but it's to no use. Preschool is coming up and we were going to see if she wanted to try a dance class, but I doubt it's going to be happening unless it's the "Dance with Mommy's Leg" dance class.

I wonder if she does have a bit of Asperger's like we suspect, is it something that makes this Separation Anxiety more extreme or what? What should we do? As her social and emotional development continues to be delayed, we wonder if we need to have her evaluated for Preschool.











01/05/12--13:54: Asperger's Syndrome and Too Much Commotion (chan 2207123)









Even though we have 2 people in our family with Asperger's Syndrome (while I will still believe our youngest is going to be #3), they can each still be somewhat different than each other.  Generally, it seems that most people with Asperger's Syndrome tend to shy away from crowds or not like a lot of commotion.  With our family it seem some of both.  




We had a free gift certificate to a children's museum that was about to expire, so on a day off, we took the family up for a visit.  I guess everyone else in the state had the same idea, because the place was packed!  




Our youngest, Rose, who had been doing so much better around other people and learning to talk more in preschool, was at first excited to enter a play area, but as soon as others came in, she was afraid and shrunk away from any play.  




Our son, MJ who is the officially diagnosed Aspie, wasn't bothered at all.  That is one thing different with him.  He seems to run around in any situation not so much worrying about who or what is going on.  He is almost oblivious to it all.  This can be good or bad at times.  I guess it is great that all the people and loudness don't bother him, but rather it is that he doesn't know how to act in the right situations.  He can be loud and obnoxious in a quiet setting and not understand why it matters, or he can be too soft in a loud situation so as no one can hear anything he is saying.  But, at least he was having fun and it didn't bother him that there was a billion other kids running around like mad.




Then of course, there was my husband who seemed to be affected the most.  He doesn't have huge meltdowns or freak out in a loud way, but when something is bothering him, I can see it in his eyes that he is having this internal battle or meltdown in which he needs to get out of the situation ASAP or he is going to lose it.  Well, this is what he was doing.  And, really, I couldn't blame him, as it was really crazy in this place today.   




But anyway, I could see that he needed to get out of there.  It was just too much.  There was too much noise and too many people.  But where could he escape to?  




In the corner of the toddler/baby area was a little "Nursing Mothers Area" where moms could go and nurse their babies in a sort of quieter corner.  I laughed when I look across the large room to see him and our youngest hiding with the nursing moms just reading a book and pointing out pictures together.  




It is interesting.  I know this isn't the first time for them to not be able to handle the craziness of something.  When our 2nd son had a birthday party with over 12 kids in the backyard one year, even that was too much for my husband.  It is often if there is too much going on, too many people, or just too much noise, that afterward he will have to go to a sort of quiet place to get himself back together for an hour or more.  The more the commotion and craziness, the longer he'll need to take to feel better.  You can't even talk to him at times.  He needs to just be by himself and have his own time to do whatever he wants.  I try to be good.  I try to let him have his time and know that when he has settled down that he can be back to his old self again.