Is Asperger's Hereditary? Another Son with Asperger's?

This blog has always had the little bit at the top that says, "Our experiences with 2 Aspies, maybe 3....", as our son MJ has Asperger's, my husband, and then we have always suspected our youngest daughter Rose to have it also.  Well, today, we might be adding another number to that tally.  We think our second son, Thomas, probably has Asperger's as well.

I suppose this is not just an all of the sudden realization that Thomas could have Asperger's.  All the signs have been there, yet we have chose to ignore them.  In some ways, his symptoms have been so extreme that they are almost shouting at us----"Hello!!!!  This is Asperger's!!!"  But why haven't we paid attention?

Back when our oldest son, MJ, was being diagnosed, the team of doctors mentioned to us that we should keep our eye on his younger brother, as he seemed to show some similarities, but I thought they were talking more about how he was really smart and reading at a young age like his older brother did.  

Thomas is our second son who is now 9 years old.  He's had his little eccentricities, but not in the same way as his older brother.  While he is very literal like his brother, I thought it was just from copying what his brother said.  He seems to have a lot of opposition when it comes to changing events or when something doesn't go the  way he planned, but I have always taken his whining and complaining as just that---stubbornness.  

Then there is the huge sensory issue.  Thomas cannot handle extreme sounds like high pitched noises, children screaming, a lot of commotion in a room, or he has always held his ears in pain whenever I vacuum.  As far as textures go, he freaks out by the feel of half of his clothes always complaining that they are not soft enough or scratchy.  No matter how hard I try to find the softest textures of PJ's, at night I always find him practically naked under the one and only fleece blanket that he will accept as he won't let any other blanket touch him.  He sleeps on top of his bedspread. 

As far as social things go, I've never really noticed that Thomas has problems talking to other kids or if he misunderstands social cues.  But then again, he is 9 years old and has never had a play date.  While he believes that "everyone" is his friend, I have never had another kid come over and ask to play or a parent ask to set up a play date.   He isn't invited to birthday parties.  Hmmm....

He has an extreme problem of not being able to look people in the eye.  I think it drives his piano teacher insane that he will never look at her when she is talking to him.  Actually he is usually looking anywhere but at the person talking to him.  He'll play the piano while intensely focusing on an object across the room.  How he does that and still plays so well is amazing to me at times, but it also seems not so good when at piano lessons as it seems he is not paying attention.  Well, that and how he seems to have this a little too long delay in his responses or you have to direct him to answer the teacher when she asks him a question or says "hi, how are you?" 

OK, so hello again!!!!  Look at all these things.....aren't they all just screaming "Asperger's!!!!"??? 

Well, no, we still just shrug it off.  

Actually, we were more concerned with a different problem affecting Thomas.  A few years ago we started to notice all these noises and facial tics with Thomas.  It began with sniffing, then gulping, swallowing, making clicky throat noises, then scrunching up his face and nose, making fish faces and blinking his eyes.  This seemed more out of whack for us ( I suppose we were used to all the other Asperger like traits) so we began taking him to doctors to figure things out.  There, it came to be that Thomas had Tourette Syndrome.  Tourette's is a condition where people tic and they can't control it.  Well, they may be able to suppress it, but it usually ends up exploding out after a while.  Now, many think it is the "swearing" disorder, but that is actually a form of Tourette's that is not always involved.  

So there----Thomas just has Tourette's.  Or so we thought.....

As we took him to different doctors, the thoughts of ADHD or hyperactivity disorders came around.  Well, yes, Thomas was the most hyper of all my children, and I swear I could not get him to focus on anything for longer than a minute!  It drove me absolutely insane!!!  He was always distracted by anything and everything!  While they evaluated him for that, they didn't seem to think he could be able to play the piano as well as he could if he had ADD or ADHD.  That, and our evaluations didn't match up with one overprotective teacher who scored him at all zero's.  We did learn that with Tourette's there is a lot of hyperactivity, so we just left it at that.

OK, back to the point of this post---the possibility of Asperger's.  Is it hereditary?  I believe it is, along with many other doctors.  But how much is hereditary and how much is just learned behavior?  I mean, younger brother has older brother and dad to look up to and they both have Asperger's.  How do I know what is him and what is just copied?  

Well, if all these characteristics weren't enough, a big one we have never connected is Thomas's massive obsessions.  I just thought he was an interesting kid who only wanted to play the piano for hours as a 4 year old.  Or, sure, my kid has obsessed about maps and atlases since he was 3 years old and spends hours just looking at maps, following roads, or making up games with atlases.  Sure, he likes to take the phone book into the car with us so he can go through every street and every map.  So.  Or, little teeny notebooks and papers.  He has to have every single thing or book that is mini.  It doesn't matter if it is some mini sized book about dirt.  It's mini, it's called "pocket" whatever, and he has to have it.  

I recently looked up an article that listed the characteristics of Asperger's in kids at http://autism.lovetoknow.com/Aspergers_Checklist, and although he doesn't seem to show the social clueless signs of Asperger's (well, maybe, I suppose he does think everyone is his best friend, but then nobody plays with him), all the other signs are there staring at me in the face.  That, and I was interested to see one of the symptoms they listed was "may have facial tics".  Hmmm...  

So now what?  Where do we go from here?  Do I need to have him evaluated?  Will doctors think I am crazy?  Do we just leave it be?  Well, this can be dilemma for another post.  But until then, I think I just might change my little description up there to "maybe 3.....maybe 4....."

Asperger's Syndrome and Too Much Commotion

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.  

Preschool Evaluation for Asperger's?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Watch Out, This Parent is "VERY Assertive!"

Look at my cute little baby boy.  

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Extreme Separation Anxiety with Asperger's?

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.

A Peek into the Mind of an Aspie

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

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

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

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

Then I turned to the next page.

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

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

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

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

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

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

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

Asperger's Syndrome; Hard on a Marriage

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Too Dependent with Asperger's? Have I Taken Care of Too Much?

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.)

How to Tell Your Kid About Their Asperger's

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.

Why Should It Matter? Telling A Boy About His Asperger's

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.

Should You Tell Your Child They Have Asperger's?

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Using a PDA for help with Asperger's

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Another Aspie? Patterns and Early Signs of Aspergers

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.

Introducing Asperger's to the 6th Grade Teacher

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

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

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

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

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

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

MJ's 504 Plan had 6 key points:

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

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

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

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

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