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".

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!

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.

Finally Friends?

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.

Friendless with Asperger's?

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.

His Obsession? Knowledge!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Problems of Labeling, Segregating, and Isolation

I've recently been in a lot of social situations with families or groups where there has been a kid with autism. Well, first off, I'm always surprised at how quickly everyone has been throwing out the "autism card" as I sometimes call it. It's like we just can't go to a social event and enjoy each others company without a parent or friend or neighbor coming right out and informing everyone there that this child has autism and so he/she must be excused for anything that may possibly happen that may be taken negatively.

And on another part, I have seen so often lately this kind of segregating or separating the "poor little autistic kid" away from the other kids as if he/she needs their own personal class, time, play area, etc.

Now most of all this is really non of my business, but it seems to me in the long run that these kids are being separated, segregated, and even isolated because of an autistic label.

I bet half of the people in any of these social situations wouldn't have thought twice about this kid having anything wrong with them unless the adults weren't out there shouting to the world about their kids' autism.

And it seems lately as if they are even giving the kid a reason to act up because the adults are right there announcing that they can't help themselves to behave.

Plus, why do they have to be separated from the other children? What is up with all this?

True, with MJ, I go right into any new school experience or teaching environment and set up an appointment to discuss his Asperger's. But I'm not doing it to excuse his actions or to get him separated from the rest of his class. I do it so the teacher can have a better understanding of certain reactions or habits, and so that they can be aware of any problems or misunderstandings that may happen. I mean, they are going to be directly working with him day in and day out, and it is important to go over certain things.

But, to everyone and anyone? I don't understand these people who go out there announcing to the world that "My child has autism!!!!" Not that we are in any way ashamed of the autistic label or Asperger's or anything, but I don't think it's fair to the kid to go out and shout his/her label to every man on earth.

Yes, if it is pertinent to a situation or environment then it is fine, but I don't think I need to go to MJ's school and tell each and every one of his peers and their parents that he has Asperger's and sorry for any misfortune that they may come across. It just seems too much.

MJ isn't dumb, and I know he doesn't want to be thought of as "the Aspie boy". My husband, although accepting of his Asperger's now, he isn't ashamed by it, but he doesn't broadcast it to everyone. He doesn't want to be treated differently and he doesn't want to be treated with "kid gloves" that sometimes happens to all these kids.

I've seen kids out there that may have Asperger's or parts of Autism that their family, friends, and neighbors seem to put on baby gloves and talk to them like babies, and expect only the absolute least of them and basically just let them get away with anything and excuse it to their label. I know some things can't be controlled, but I'm sure some of these kids take advantage of their extra leverage in freedom. And because of this label I've seen community classes and other groups allow these kids to have their own class or craft time or whatever because they need to be isolated to best help the child.

How does that help the child? All MJ wants is to be accepted and fit in a group of friends. Why would any kid really want to be separated and kept alone? I suppose I'm an advocate of the whole mainstreaming program in schools to allow kids to be with kids instead of themselves. Sure, it's good to be with other kids with disabilities, but they should be able to be with regular kids too, just the same way regular kids should see that everyone has their differences and be with kids with disabilities. There is a lot to be gained and shared by everyone.

OK, so I'm sorry if I've touched any nerves here. Everyone has their own points of views and this is just what it seems to me. Not everyone is parading their child out there with a sign around their neck saying "I have Autism", and I'm definitely not saying there is anything wrong with being autistic or an Aspie. I think there are so many wonderful qualities that come with my husband and sons for having those traits of autism and Asperger's. I just wonder sometimes if people are jumping on the bandwagon too soon to make their child stand out in a bad way.

I hope MJ grows and develops and becomes a successful adult. I hope that he makes it in life and figures out what works for him as far as his Asperger's. I know him knowing he has it and others knowing he has it can be helpful in many good ways as long as it is directed in a positive nature. I don't see having Asperger's as a disability. I see it more as having a different view on life and thinking. It isn't something to use as an excuse, but rather something to use as a better understanding of a person and to more easily accept them. I just hope MJ gets treated fairly in life and not with pity.

Surgery? Toe Walking Continues.....

MJ has been walking on the tips of toes since he was almost 3 years old. We had been in physical therapy when he was 3 but it got expensive and it wasn't doing too much. His new pediatrician said wait and do nothing, then just do surgery when they are about 6 or 7. That seemed odd that there could be no preventatives, so we went to see an Orthopedic Specialist when he was 5.

This doctor recommended putting him in casts for the summer. He bent his feet in 90 degree angles then casted them to stretch them out.

Did this work? No, it maybe kept his tendons from getting any shorter, but it did not make any difference to the way he walked. He was right back up on his toes soon afterward if not almost immediately.

So, we've kind of been back and forth about his whole toe walking thing. Why torment a kid all his life with "PUT YOUR FEET DOWN!"? I got tired of it, and it made MJ have ill feelings toward many of our friends and family.

I asked doctors and specialists every chance I got and no one gave me a real need to take action. I figured maybe some day he would learn to walk down, or if he didn't then oh well, it was his own weird thing. I had seen a lot of other kids with autism do the same thing. He was my kid and I loved him.

Recently a little girl in our neighborhood, 5 years old, was going to have surgery. When I asked her parents what for I was surprised that it was because of toe walking. I had never really noticed this little girl, but her parents said she had been walking on her toes for so long that they wanted to take action.

They took her up to the childrens specialty hospital here and saw an Orthopedic Specialist (well, I believe it was one of their nurse practitioners) that told her if she didn't do surgery on her daughter that she would have back problems and other drastic problems as she got older. Now I have always wondered this possibility, but no doctor has ever confirmed these worries. They told me they were going to do this heel chord surgery where she would have her tendons cut then be casted for 4 weeks, then get them off. It was supposed to fix the problem.

Well, I still think, yeah, what's going to change such an awful habit? So what if you get your heel chords cut, what's going to stop the kid if he's always done it? But anyway, I was interested, and so we made an appointment to go see these specialists at the childrens hospital to see what they thought.

First things first, no one has really believed me on the intensity of MJ's toe walking. Whenever I have asked doctors to look, MJ is aware and he forces himself down on his feet to defeat the whole purpose. I sit there and look like some crazy parent who is trying to make up things wrong with my kid.

Well, this time I was lucky I guess and they actually saw his real toe walking patterns and they examined him and offered surgery right off. I'm not going to throw my kid into any surgery, so I asked many many questions.

They told me there wasn't really any problems with a kid who toe walks, that it's not going to cause them joint or bone issues or hurt their back, etc. (Now how come they told the opposite to the other girl's parents?) And interestingly enough, they said a kid with Asperger's will probably NEVER outgrow toe walking because an Aspie kid just doesn't really care. While other kids will be teased and pointed at, they will learn to walk down because of peer pressure. An Aspie kid is usually oblivious to the teasing, or just doesn't care enough to make the change.

They said MJ wasn't so bad, but they could do the surgery or not. This really wasn't too helpful. I wanted someone to tell me "this needs to be done" or "no, don't do it" and this surgeon was telling me neither. She sat there and sad it wasn't urgent and so we could think about it for years to come, but she saw the need enough that she could do it if we wanted to. SO weird! Isn't that why I go to these specialists so they can help me know what to do? How am I supposed to make that kind of a decision? I was concerned with doing surgery, but then at the same time concerned what would happen not doing it. The doctor said he wouldn't have any problems with toe walking but as his heel chords become tighter it may "hinder" him as he gets older and not allow him to put his feet down at all. Hmmm.....??? She said if he needs to be down playing sports, etc, that he may have problems.

Now, of course MJ hates all sports, but he does love to dance. He takes ballet and tap. The whole reason he takes tap is so I could get him to put those heels down! I haven't seen a big issue with him not being able to put his feet down when he dances, but there are a lot of times when he probably does look a little more awkward while dancing because of it. I want him to be able to dance if he wants, but is this whole toe walking thing going to mess that up?

I waited, and told the doctor I would think about it and she pretty much gave me the impression of whatever it didn't matter either way to her. I decided to go home and see what happened with the neighbor girl. Doesn't that sound bad? Like she's the guinea pig or something? I didn't mean that badly, just we thought we could see her experience.

Well, the little girl did surgery just fine and had 2 pretty pink casts on for a month. They were walking casts so they didn't slow her down any. We waited for the time to take them off. The week after she got them off we saw her at church and she was walking very oddly. One foot was twisted sideways and dragging while the other one pointed up in a strange way. I felt kind of bad for her and realized I didn't think about asking the doctor about what happens after surgery and recovery time.

I watched her for the next couple of weeks and she was getting better but still a little awkward. True, she wasn't walking on her toes anymore, but could she even get up on her toes? I asked her mom this later wanting to know if she could get up if she wanted to. I was concerned because it would be great to have MJ walk flat, but at the same time, if ballet is important to him, he needs to be able to get up on his toes too.

The mom told me she had tried to show her how she could get up on her toes but that she was clinging to the counter and bending her knees out to do it. Hmmm. This didn't sound good.

I'm sure this was all good for the little girl, and actually now 2 months later I see her walking great, but I worry about the whole after surgery thing. I guess the surgery cuts the tendon and so all muscles around it must be built up again and it will probably take a while before they are strong enough to support being on your toes. This is OK, but how do I schedule this in on a dancer?

We could do the surgery then hope he recovers and builds muscle during the summer in time for next fall's dance classes? Or do it in the middle of the year and throw him off? Or......

OK, you're thinking, this is dumb and it's just dance and your son is more important, but who's to say what will happen? I mean, what if he can never get back on his toes after surgery? He doesn't like any other extra curricular activities. He'll have his only thing taken away.

We decided we'll give it one more year. This year he has been waiting since he started ballet do try out for the fancy downtown city's Nutcracker. He will audition in a couple of weeks. Let him do that, have some fun if he makes it, then maybe this next summer we can do surgery. We'd rather not do any surgery, so we are implementing a plan of ankle stretching.

Every day we make him go for a walk around the neighborhood and he must have his heels down the whole way. At school we've told the teachers and principal to cue him when they see him up and to have him agree before walking laps that he must keep his feet down before walking.

We want to see if we can prevent surgery and not have to go through all these worries of when, how, what if???? Plus, poor MJ has enough issues as an Aspie let alone to be in 2 awkward casts for a while to add to it.

Of course we still love our son no matter what, and wonder what's to fix it in the end if he does do surgery. I'm not going to go on a path of doing surgery every 3 years like the doctor told me some kids do who have cerebral palsy or MS that shorten their tendons. Hmmmm.....we've got to break this habit. We hope we can. This year will be the test.

Asperger's in the Office

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

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

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

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

Recently we have found it has it's setbacks.

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

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

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

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

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

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

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

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

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

"Do It 'Cause They Told Me To?" or "Do It 'Cause No One Told Me Not To"

So, I know kids with Asperger's are often picked on or made fun of, but I always have to wake myself up a little more when problems arise at school.

A big problem for MJ is that kids will tell him to do things at school, which aren't the smartest, and he'll just do them without thinking twice.

One day I got a note home from his teacher explaining that MJ had gotten into a lot of trouble during lunchtime. Apparently, MJ had been chosen to help with the lunch staff, and he was supposed to be wiping off tables with a rag along with another student. The other student comes up to MJ and says, "Squeeze the rag over my head and get me wet." And so MJ does it, and then the kitchen staff sees him and he gets into a lot of trouble.

I ask MJ about this, and he seems confused that he would get in trouble since the other kid told him to do it. I asked my husband this also, and was enlightened that he wouldn't think either, he would just do as instructed. (Well, not now, but when he was in school.)

I added this to another problem that we've discovered. Although they take everything literal and don't understand the underlying meaning if not spoken to directly, it seems they also don't understand when someone says to do something directly, that it shouldn't always be taken literally and followed. (How confusing, right? I mean, I'm not an Aspie, and it seems confusing to me!)

So how do I explain to them what to do? Obviously they have learned through experience. My husband is not going to drip a rag on someone's head now, although he says he would have acted the same way years ago. My husband learned after much error that you shouldn't always do what your peers tell you to do.

I explain to MJ that just because someone tells you to do something, that you don't always have to do it. Especially if it is not an adult and if it is not a good thing. Now I, myself sit here and think, well, gee, of course we shouldn't be dripping rags on people's heads, but MJ doesn't understand all these social rules and reason. I mean, why not? Why should it matter?

As my husband explains to me that the way they think it is different. Like why not say this or that or act in this certain way? I am always reminded by it when MJ comes out with a striped shirt and camo pants that are way off together and I try to explain to him why he can't wear that. Aspies don't see reason for social norms or rules. It seems dumb to them almost.

When I've gone to people's homes or different places I have an awful time with MJ going through their houses or a business in different rooms uninvited or areas where he shouldn't be, and he doesn't understand why that is bad. When we are at a doctor's office, my own husband is opening every cupboard and going through every drawer like it is just natural and fine to do whatever out of curiosity's sake. Drives me nuts!!!

I've had to sit down with MJ and tell him that he needs to think of the world as a "Don't Touch, Do Not Enter unless told to do so or invited" place. He doesn't understand why it should matter, (back to the whole not understanding ways of the world and nonspoken social rules) but I just tell him he needs to do this. Don't go in people's bedrooms when we go over to see someone and we're sitting in the living room. Don't go behind the storage area of stores. Just don't. Don't touch anything unless you are told you can do so!

This is frustrating, but the other is more worrisome. The whole "Do it 'cause they told me to" thing bothers me. I guess I need to sit here and think of every little scenario and tell MJ that this or that is bad and to never do it if someone tells him to, but I can't think of everything! I suppose my greatest responsibility will come to talk about drugs, sex, violence, stealing, etc, but all these little things we'll just have to learn as we go.

This is the difference in an Aspie that I see almost the greatest. I think it is just common sense that you should do this or that, or not stick your nose into other people's places or business, or not do stupid things if someone suggests it. To an Aspie, they don't see why a lot of things would be stupid, or not, or wrong, or weird, or socially wrong. It's just another day and another experience. Most of us can just learn the social know-how as we grow and mature, but an Aspie never quite picks up on it without a little bit extra of instruction, or learning by mistake, or as my husband tells me, there are hundreds of things he doesn't even realize that he shouldn't be doing according to the "social norm".

Again I always fall back to what is the reasoning for this "social norm" anyway? I mean, so what if we wear mismatching clothes or say what's on our mind or do stupid things sometimes? It does add some variety and spice in life. But yes, I guess it isn't always taken with such appreciation.

Do We Have Another Aspie?

This is my second son, Thomas. Such a cutie with such a personality, but as the years have gone by we wonder again, does he have Asperger's too? Does he show some of the same signs and traits?

Back when we were testing MJ, the doctors and psychologists hinted that we would probably have more than one kid genetically linked to their dad with the Asperger's traits. They spent some time with him and made a few comments, but he was only 4 then and I don't think they were ready to make any real professional opinions yet.

Much different from MJ's personality, but Thomas has such strong emotions and sensitivities. He absolutely can't stand any loud noises. He shrieks if I turn on the vacuum cleaner. He can't stand most of his clothes, socks, or shoes. He says they don't feel good. He says he doesn't like the way most things taste, feel, sound, or look. He can't handle bright lights or sun.

Sometimes I think he's going to drive me insane with his oversensitivities! I remember MJ being really sensitive by his clothes and textures of food and such when he was very young, but I grew used to it. With Thomas, I think I am just annoyed that he won't wear what I give him and he can't seem to find anything else that "feels good".

He's very smart like his brother, although he doesn't get into such intense thinking as MJ does. He did learn to read at 4 and skipped Kindergarten and is in the same gifted program as his brother. While MJ was obsessed with reading, Thomas developed an obsession of the piano. He taught himself to play and would play the piano for hours and hours on end. He wanted to look up and find new sheet music on the internet. He wanted to play through book after book.

There's that whole processing delay thing that I think goes along with Asperger's. As my husband says, it's just a matter of having to take the time to organize your thoughts before you can speak them because you want to make sure you say it the way you want it perfectly. Thomas seems to take a little to long to answer questions and respond, just the same way MJ and my husband do.

Transitions are crazy! He is always bawling that he didn't have enough time to do this or that or play or finish whatever.

Who is to know? I'm not out there looking to pinpoint traits or trying to prove he is an Aspie too, but it's good to keep an open mind if he does. He has always been so literal along with his brother about everything having to be called the exact thing that it is.

I worry sometimes that since he is going through the same teachers in the same program that these teachers might refrain from making any comments being that they don't want to have to deal with another Aspie kid or another set of instructions or accommodations.

We want the best for all our kids. I guess all we can do is just watch and observe and try to get the best for each of our kids no matter what their quirks, strengths, or weaknesses.

Saved by the Social Worker

We went to contact the school's psychologist as requested by MJ's team of doctors, but were surprised that the school didn't have one. I told the secretary that they wanted all these observations to be done on MJ and some evaluations and further testing, and she referred us to the school's social worker.

Now, I'm not sure what a school social worker is over or what their job entails, but ASAP this gal called me and started to review things about MJ.

It turns out that she has been in the school since MJ has been going there for the last 2 1/2 years, but has never once been notified of anything having to do with MJ. This very much surprised me. Well, it surprised me that I didn't even know the school had someone who was over students in this kind of manner.

We had initially dealt with the special ed teacher, the speech pathologist, the principal, and the teachers, but why would no one have suggested bringing the social worker in? After talking to her for a while, it sounded like she was the one who dealt with kids who didn't quite fit in at the school or had different problems relating anywhere from autism to ADHD.

Now, how come she wasn't notified?!!!

Well, anyway, this gal was the first person I have talked to within the school district that actually seemed to want to help and get things accomplished. Yes, MJ's teacher in 1st and 2nd grade was great and worked with him well, and yes, the special ed teacher was nice, and yes, the speech pathologist before was nice, but no one seemed to think we needed something more to help MJ. No one seemed to know what to do or what should be allowed. This gal was educated and this gal was going to get things going. We were not going to allow MJ to fall through the cracks.

So at this point I was pretty optimistic and had high hopes of achieving something new. She told me she would do a series more of testing and evaluations/observations, and then she would get back to me and we would see what accommodations could be made for MJ.

Hooray!!! Was this finally it? Had we finally gotten some results in this 2 1/2 year struggle to get help for MJ? We waited in anticipation.

The School Says "Zilch"?

Since we seemed to be having continued problems during his 3rd grade year, we decide to contact the group of psychologists and doctors that had initially helped with MJ's diagnosis to see if they could help us get an I.E.P. established.

When calling them, they were surprised that MJ was out of speech now and that no I.E.P. (Individualized Education Plan) had been set up.

I explained to them that the 2nd grade teacher had been great and knew exactly how to work with MJ since she had him the year before, but now things were a little more difficult this year.

MJ was totally unorganized, his speech was still terrible with talking too fast, too loudly or softly at the wrong times, he was still not understanding social cues and nonliteral commands, not getting work done, and he was getting in trouble a lot for things he didn't connect with or understand.

I felt like something had to be done, but I didn't know how to approach the school myself, so this is why I called them.

After talking to them for awhile, they asked for a variety of observations to be done on MJ at school and for some other various testing. They said the main problem I might have is that the school didn't seem to believe that MJ had Asperger's. They said after they diagnosed him almost 2 years ago, that they sent all these evaluations to the school to have the teachers rate MJ, and that they had all come back as "zilch" as they said it. They said that MJ's teacher's didn't see any problems with him whatsoever.

This made me a little confused, maybe a little upset, a little questioning....I mean, the school is who came to us in the first place saying something is wrong with your son---go figure it out. They are the ones that suggested such things as "Previous Brain Injury" or other awful things that could be wrong. They are the ones that told us that he was having problems and something wasn't right. So now we came back with a diagnosis and all of the sudden they were saying that everything was fine and that he didn't have any problems whatsoever? I didn't understand. Why would they do that?

So although these doctors, psychologists and specialists were putting on record and diagnosing MJ with Asperger's, it didn't do well enough to get the school to want to do something. As I had trouble earlier and told by the district that "it didn't matter what diagnosis he had, that there was no accomodations allowed unless he was failing academically". This did not seem fair to me.

MJ's doctors asked me to contact the school and ask the school psychiatrist to do some of these observations and bring back up the results of some of his previous testings. Then, maybe with some of these results they could help me know how to direct the school for help with an I.E.P. for MJ.