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....."

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.

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.

Facing a New Challenge: Skipping Grades with Aspergers

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

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

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

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

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

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

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

Swimming Lessons, Asperger's, and Awkwardness

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

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

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

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

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

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

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

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

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

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

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

So, how would he do?

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

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

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

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

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

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

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

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

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

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

Super Smart with Asperger's

OK, so much of this is a recap, but if you haven't been following this blog, it needed a little reviewing:

For years we have known that MJ was gifted. It is what we first noticed before anything else. Poor kid suffered bored through Kindergarten then tested into a gifted split program where we put him into another school. We worked through 1st, 2nd, and 3rd grade trying to figure out a place for him.

He was always so super smart, but then all these little things were holding him back. With his Asperger's he has trouble processing things quickly, his handwriting is terrible, and his gross motor skills leave him clumsy and awkward. His organization skills are awful, his short term memory for remembering things to bring home or assignments was not good. His speech was delayed and he mostly stuttered or got stuck on phrases when trying to explain things.

When he was in first grade and the teachers came to us telling us they thought something was wrong, we took him straight up to the children's hospital to have him checked out. MRI's, neurologists, pediatric specialists....in the end it came down to Asperger's. I had never even heard of Asperger's before then.

We were sent to specialists for Asperger's and psychologists to evaluate MJ. Also, the school was testing MJ on his intelligence and motor skills at the same time.

Through all this, back in first grade, along with the diagnosis of Asperger's, these teachers and doctors were telling us another thing---MJ was brilliant. They told me his IQ was "in the genius range", and that he was testing off the charts, but then the problem all came down to processing. There was this huge gap between his intelligence and what he could process. It seemed very unfair. He was super smart, but he couldn't let others see it because it was too difficult to write, or he was too slow or awkward to communicate.

Back then I called the school district and talked to the school asking what we could do to help him. Couldn't we accommodate him in some way so that he could be able to communicate this knowledge and intelligence to others?

I was outraged when the school district told me that it didn't matter what medical diagnosis he had, that as long as he wasn't failing academically, that there was no need to accommodate him in any way.

So, fine. Let MJ be super smart, but let him never be able to show it because the school system doesn't care unless your child is failing.

This seemed like a huge injustice to me. But, life went on and I guess we were lucky that he was still making it in this gifted program. His teacher for the first 2 years knew how to work with MJ and actually by the end of 2nd grade, he was improving some on his handwriting and not stuttering as much. Good for him.

3rd grade proved more difficult. He was demanded much more written work and timed tests which were just too much for a child with a processing delay and physical difficulty in handwriting. I remember trying to work with his teacher and talking to the gifted coordinator trying to find a place for him. It was hard to make a place in a gifted program for a kid with Asperger's. I was getting extremely frustrated, but I had been researching, and talking to MJ's doctors, and they were concerned why MJ wasn't getting any accommodations.

We finally found out the school had a social worker who we had work alongside us in finally setting up a 504 Accommodation Plan for MJ at the end of 3rd grade. Maybe now he wouldn't get so left behind.

We switched schools for the start of 4th grade for social reasons really, but then things continued to not work out. This time it was more academic problems. It was like we couldn't win. He was either bored academically, or miserable socially. Or sometimes both.

Back at the beginning of 4th grade, we met with the teachers, school psychologist, and principal of the new school to discuss MJ and what we could do as far as his Asperger's and how the school material wasn't challenging enough for MJ. (We were back at the regular neighborhood school and right away MJ was far advanced in all the subjects and was questioning why he wasn't learning anything new.) We didn't know what to do and asked about grade promotion.

The school started a series of testing that lasted 3 weeks. MJ didn't mind. He actually likes taking tests. But anyway, at the end of all this, the psychologist told us that MJ was like a kid in 300,000. She said much of what we had heard before, in that his intelligence was that in the "very superior" range, and that he was testing far above his peers, but that his processing was that average to kids his age. (Well, this was good at least---his processing had finally caught up to his peers. But it wasn't right compared to how far ahead he was intellectually.)

But this time it was different. THIS school actually cared about MJ's potential, and they wanted to be able to match his education with his intelligence and not let anything hold him back. So, for the first time, they were going to work with him. They were going to allow him to do extra things, and take certain subjects in the grade level higher to match what he knew.

It was a little weird though. Because they were telling us basically that MJ was brilliant, but they didn't want to skip him any grades, because if they did then they would have to skip him again in 3 months, and again and again....

Now, I'm thinking, what? First off, I would not skip my child again and again and again. And how can they know this or say this? They said he had the ability to "master anything presented him in a short period of time" and so he would just keep going on and on. They decided rather to accommodate him by the split grade thing and giving him time to do more research into things he was interested in , and giving him his own laptop to make up power point projects to present his class.

Well, all was well for a while, but....we were getting into some problems. You take a kid with Asperger's who is very into routine and schedule, and who can't handle transitions, and then you try to have them go back and forth between grades and see what happens when the times don't always match up for math, or he misses part of his regular grades class, or recess time. MJ was coming home with major meltdowns on a weekly basis.

And, although he had this laptop to use, really he was never remembering he could do that, and he was just given busy work a lot of the time to fill in the time he was normally bored.

Socially at first he was doing well at the new school. We thought he had a few friends, but by the end of 4th grade, he was back to being friendless and bored with school. He told us that besides math (in which he took in 5th grade), he didn't learn anything he didn't already know except for stuff about soil.

And now, we also found out the principal was being transferred to another school, and we were worried. What would happen to MJ?

Would the new principal agree with the way things had been done this last year? Would she allow a 504 plan for MJ? Would she decide he should not do split grades and have him repeat 5th grade math all together?

We didn't know what to do. We hated how the school day caused emotional drama for MJ. It wasn't always smooth, and he was freaking out because of the non-routine. They had told us when he got into 6th grade that they wanted him to walk down the street to the junior high school for more advanced subjects. We didn't want that. That didn't seem safe. How would that work out? We didn't want MJ to have to repeat the same subjects next year either. So what could we do?

This is why when we decided to meet with the Principal and school psychologist, we wanted to discuss the 504 Plan to make sure it would be in place for next year, but also we had a separate agenda. We wanted to suggest MJ be skipped into the 6th grade for next year.

Yes, I know what you are thinking. You're thinking, "Are you crazy?! Skip a child with Asperger's a grade where he is going to have one big emotional meltdown and all kinds of trouble?" And yes, maybe we are crazy, but we were finding out more and more that there wasn't a place socially for MJ. We had been going back and forth for so long. We started out trying to help him fit in socially, but then that didn't work, so we moved him schools to focus on academics, but then he failed miserably socially, so we moved him back, and now he was hating life academically. It was like we couldn't win no matter what. And by the end of this year, we were beginning to see that maybe MJ was never going to fit in socially no matter where he was placed. So, should we hold him back for fear of social downfall, when really he wouldn't fit in no matter what grade? Plus, do we torment him by making him repeat subjects he already has mastered, or do we torment him by having his school day all crazy and never exactly set because the separate grades do things at different times?

Really, what could we do? The only resource I've had is that of my husband, a grown up adult with Asperger's, also very gifted, who has lived through school life and is able to give his opinions.

For my husband, school was miserable, and he never really fit in socially. He hated elementary school and was always bored. He says not until junior high did he begin to enjoy school because he was more challenged and the subjects were split into levels more where he could be challenged. He said he always wished he could have been more challenged and skipped grades just to get out and done with school. The uneven school day is a nightmare for Aspies. MJ needed to be challenged and allowed to not have to repeat math and other subjects, but at the same time, it was too hard to have him not have one set teacher and a set schedule.

So, here we were meeting with the school psychologist and Principal who were actually both very surprised this was on our agenda. The psychologist thought it would not be good to skip MJ. She said she could see all kinds of "red flags" socially and emotionally, but at the same time, she said he was not the normal kid. With Asperger's it put a whole mix in the puzzle because who was to say he would ever really get things socially? We were kind of frustrated because she was the one who basically had told us before that MJ should be in college almost, but now she was like how could we even think about promoting him?

My husband did all the talking and described what he felt and shared his experiences. Now, he and MJ are like peas in a pod. They think the same, they act the same, they understand one another. Hopefully, somehow he knew what would be best. MJ was all up for the idea of skipping the 5th grade. He already had mastered math, and reading he is a whiz. Grammar he already knows. Science he is smart in. The only thing really would be history, that maybe we could work on over the summer.

But still, really? Was this a right thing to do? I kept asking my husband if this was OK. He kept saying again and again that it was the only way. MJ needed stability, but he also needed to be challenged.

So, after some consideration, the Principal was to be the deciding judge in the matter. It was the last week of school, and we waited in agony for what the decision would be. I don't know what I feared more, the answer to be yes, or the answer to be no.

Oh, by the way, if any of you are interested, I maintain another blog where I've kept a record of life parenting a gifted child at www.parentingthegiftedchild.blogspot.com. This blog I try to keep focused on our life with Asperger's, but the other blog I focus on our life decisions, trials and errors in raising a couple of smart kids. They seem to intermix a lot though. It seems as if they go hand in hand.

Special Ed?

So, it was the end of the year for 4th grade and all of the sudden we found out the principal who had been so wonderful and accommodating with MJ was going to be transferred to another school. This had us extremely nervous.

How would we know what the new principal would be like next year? How did we know she would allow MJ's 504 Plan to continue or accept it?

We were very worried, so we decided to set up a meeting with the current Principal and the school psychologist BEFORE school ended to update the 504 Plan, plus maybe talk about how it had not worked very well over the past year because the teachers were not following it consistently.

It took us much calling and emailing to set up the appointment, but when we did we were actually surprised what was suggested.

Now, as you have read in previous posts, MJ had several things listed in his plan which were supposed to help him throughout the day. The problems we were having was mostly that the teachers were forgetting to follow through with these helps.

One of our biggest problems still was how MJ would get home and not have the work he needed to do. Or he would be getting in trouble for not remembering things or finishing assignments. According to the 504 Plan, the teacher was supposed to be helping to cue MJ and to be checking off his day planner at the end of the day to make sure he had all the assignments going home placed in his backpack. This was not happening.

Now, good grief I know the teachers have a lot to deal with already, and I'm not blaming anyone. And really, what good was it doing having the teacher always having to cue MJ or remind him or whatever. Yes, it would help, but was it going to help him in the long run? No. We really needed something so that he could learn on his own and something that could help him in the future so he didn't have to depend on other people.

I've been trying to get MJ to be more independent. I've been teaching him how to cook, do laundry, dishes, and jobs on his own. Why not keep going? So anyway, we thought maybe we could discuss allowing him to use his own personal PDA that would cue him when he needed to be somewhere, do something, or most of all---what work he needed to bring home and get done.

There were some other things we wanted to discuss too. He was meeting once a week with the psychologist to talk and play games with 2 other boys. I'm not sure what the purpose of this was. I think the other boys had some sort of anger management thing and maybe he was assigned this time because of the whole biting incident.

I was disappointed though. I figured maybe this could be a chance for him to learn more social skills as far as being taught or going through social stories to learn more how to appropriately respond and act amongst "normal" people.

At the meeting we touched on the idea of a PDA, and then when I began talking about my hopes toward social teaching, the psychologist suggested a different possibility. She suggested Special Ed.

OK, so I don't have anything against special education classes. If fact I think they are most wonderful for the right students, but I did not think it was the right place for MJ.

MJ had his issues, but he didn't really need a special ed class to get him through school. He was extremely gifted. At the beginning of the year they had done a series of tests and told us that he was extremely intelligent and in the "superior range". Now, not to say that anyone in special ed can't have a high IQ, but I just didn't see what purpose it would be to place him in a special ed class.

Just because he needed some social teaching and guidance, he isn't allowed that unless he is put in Special Ed?

I guess I didn't understand. Really we were meeting for yet another reason, which we will explain in our next post.

Biting?!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Changing Schools for the Better?

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

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

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

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

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

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

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

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

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

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.

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.

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!"