Tuesday, December 29, 2009

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?

Wednesday, November 4, 2009

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.

Thursday, October 29, 2009

Check out my articles on Examiner.com

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

Saturday, October 24, 2009

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.

Sunday, October 11, 2009

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.

Monday, September 14, 2009

Movie Review---the new "Asperger movie" Adam

Have any of you heard of this movie? It was released around August, but it is more one of those "film society" movies, so it isn't in all the theaters. It is about a guy who has Asperger's whose father dies and leaves him to live alone in an apartment. A girl moves in next door and they develop a relationship with all sorts of ups and downs while she is trying to figure him out.

Well, I had looked forward to seeing this movie and taking my cute Aspie husband to see it as well. I had seen several previews and I thought it might be an interesting and funny movie for us both.

First off when getting into the movie I felt kind of bad or even guilty for taking my husband to such a movie because the actor portraying the man with Asperger's was a little bit too "childish" or something. Not exactly, but it's like he talked almost babyish or like someone who you would look at and obviously think had some kind of mental issues. I didn't want my husband to think I thought he was like this guy. Not that there was anything wrong with him, but it just seemed a little too much. It seemed to get better as the movie went on, but it almost upset me to think people might go into this movie and come out thinking Aspies are totally unable to be independent and take care of themselves or fit in.

There were many parts of the movie that hit Asperger's dead on. Things about how an Aspie may not see the need to do something unless specifically asked, or things about how they can talk a little too much without realizing they need to change the subject. My husband and I laughed at these parts and recognized them for what they were.

In all actual, the character reminded me more of my 9 year old Aspie son. I could see him in the character, more unable to know how to do things or adapt to social situations. But as the movie went on I began to understand where they were coming from.

This character seemed to have a very sheltered life until his dad died. He was a kid with Asperger's grown to an adult who probably had his dad handle everything. He had never been out of the city by himself or really done anything by himself. This is where I began to understand the character as a "sheltered" Aspie. Toward the end of the movie it showed more realistically that of my husband who had learned to adapt to the "ways of the world" or had figured out how to "fake" things in a sense to fit in. You could still tell it wasn't easy, but it showed that an Aspie can get a long just fine in life and it doesn't have to be made into such a big deal.

I guess I have mixed feelings on this movie. It kind of made me worry that other people are going to think Asperger's is a major disability, when I don't believe it is. Maybe I'm wrong, but I think of it more as a way of thinking difference almost as if it were a different culture and not so much a disability. In college I got my degree in Interpreting for the Deaf and we never looked at Deaf people as having a disability, but instead having a culture all their own. It's just a different way of life.

My husband liked the movie, however hated the ending. It wasn't exactly a happy ending, and the girl in it didn't understand what the guy meant in the end. And it bugs me that I understood what the guy meant although he couldn't put the right words out, but I know that most audiences are going to take what he said literally and not understand along with the girl and so think that the guy was dumb and could never do right in the world.

OK, so I don't want to spoil this movie for anyone as to why I'm not giving big details, and I suppose you won't know what I'm talking about unless you see it. I'd say see it, and see what you think. There is good and bad. Being surrounded by Asperger's everyday, the movie made sense to me and I read more into it that probably most people will. I just wish the regular movie goer could too or I really feel people will come out of this movie thinking that Aspie's can't have a normal relationship ever and that you shouldn't marry and Aspie.

One part in the move upset me a lot. It was when the dad of the girlfriend was telling her why she shouldn't be with this Aspie guy. He was telling her the guy could never be anything more than that of a child and he could never give her what she needed or be equal, etc. This made me angry in 2 ways. It made me upset to think how other parents might direct their daughters not to date my son later in life, and it made me upset to think my husband might think he's not good enough. I love my husband and never once thought I was married to him to "take care of him" or that he is a child.

I guess one good thing I get from the movie is to know we are doing the right thing to not let our Aspie son lead a sheltered life. We push him out there and get him experiencing all parts of life regardless of his Asperger's. I think I would like to see a movie more about someone with Asperger's who had a little more experience in life, or rather the "continuation" of this movie to see really what this character could do now that he had learned a bit more.

Anyone that's seen this movie, please let me know what you think!

Tuesday, September 1, 2009

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.

Thursday, August 27, 2009

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.

Wednesday, August 19, 2009

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!"

Tuesday, August 11, 2009

"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.

Wednesday, July 29, 2009

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.

Thursday, July 23, 2009

Completing the 504 Plan

So, we met with the Social Worker, the Principal, and MJ's teacher on a Friday to write up a list of goals on the 504 plan. If you aren't familiar with what this is, it is basically a binding contract between the student, parents, and teachers as to what goals are to be met and how each person is going to contribute to making these goals happen. On one side is the goal, and on the other side is what each member of the team will do to aide in this goal.

As we sat together, it was interesting as I realized me as the parent probably knew the most about what was to take place and what should be established. I was impressed that the social worker and the principal had been researching into Asperger's and they had several articles they had pulled up on the internet, and the Principal referred to a book about Asperger's. So it was good to know they were actually interested and wanted to to their best.

Anyway, here is what was established:

They set up 3 main goals.

1-Organization (to help him get more organized, i.e. having teacher sign planner and review that he has actually gotten his stuff in his backpack to go home for homework)

2-Maintaining Personal Space (help him when cued to back up or give people more space)

3-Placement of Written Work on Page (using graph paper, limit written work, more oral type assignments)

So this was it for them, and being a good advocate for my child, I did not sign it, but told them I would take it home to review.

During the meeting the teacher kept saying there was a lot of things that she already incorporated with MJ in the classroom, but I felt that it would be best to have a legally binding document to keep her doing these things, so after a bit of extra researching and studying up on 504 Plans for Asperger's, I added 3 more goals and brought it back to the school. I added:

1-Executive Functioning (saying the teacher must monitor in class work, use direct and literal instructions, and give preferential seating close to the teacher)

2-Speed in Completing Assignments (allowing extra time for any tests or timed tests as needed)

3-Communication (cueing MJ to slow down or talk louder or softer depending on the given situation)

So, in the end, we had 6 goals for MJ and we all signed it and I was pretty happy with it being that they accepted everything I requested.

I was excited to see how this would make things more smoother for MJ and us. Hopefully now he wouldn't be coming home everyday with homework assignments, but not the homework. And hopefully he wouldn't be failing assingments because of these timed tests that were too fast for his processing delay. Hopefully he would be understanding more instructions that were literally directed to him and he was going to have a happier year.

Of course the only problem was that this was the middle of May, and school was basically over for the year, so we would only hope that starting out next fall that things would go smoothly. MJ was going to have the same teacher next fall for 4th grade (he's in a full time gifted program that joins every 2 grades together), and hopefully this year would be better.

Tuesday, July 7, 2009

The School Decides on a 504 Accommodation Plan

So, observation after observation went on, and tests, and questionnaires one after another were sent home to us. I felt like it was a little redundant, being that MJ had already been diagnosed by trained professionals and doctors, and yet the school seemed to want to come to their own decision, but I filled them out and sent them back in.

After 2-3 weeks the social worker got back to me and told me MJ didn't really have too many problems with social issues and that he had a lot of friends. This I'm not so sure if I agree totally with because I see MJ as one who thinks he is playing along or kids are playing with him and yet he's not really involved or doesn't realize that the other kids aren't paying attention to him, but oh well, it wasn't a huge deal yet. I was more concerned with the miscommunications and problems that were happening within the academic school setting. She said she had reviewed the tests and previous testing and did see a need that MJ needed some accommodations.

Yay! Finally! I was thinking, yay, he would finally have an I.E.P. But I was wrong. The social worker said she would rather not do an I.E.P. because then he would "have to be labeled as autistic" and they didn't want to "do that to him" (like in a negative tone, like it was leprosy or something). Now, I was thinking. Isn't that what he had? Yes. He has Asperger's. Isn't that a kind of high functioning autism? Or did they not think that and they would think that was wrong? They said it wouldn't be a good idea to put that label on him now, but we might choose to do so when he entered Junior High depending on how things go. OK, so I still don't understand why this would be wrong or not. It's not like we're lying or something, but I guess they felt he shouldn't be put into that category for some reason. I don't think it's like he's going to have a sign around his neck that says "I have autism!", but then again, I guess I am just confused.

Anyway, she tells me they can set up something called a 504 Plan (which I already knew all about and was glad to get it after so long of nothing) that was a way of making up binding accommodations for those with disabilities that don't qualify for special ed services or an I.E.P (Individualized Education Plan).

I was excited to finally have something. She said we would meet later that week with her, the teacher, and the principal to make a list of goals, and objectives to meet those goals.

So this was good! Maybe this would be a start! I spent the week researching and reading up on every legal right that a kid with Asperger's should be allowed in a school setting, and I prepared myself for what I should request when we would meet.

Sunday, June 14, 2009

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.

Sunday, May 31, 2009

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.

Wednesday, May 13, 2009

Bluntness-----Keeping Comments to Yourself

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

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

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

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

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

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

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

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

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

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

Tuesday, May 5, 2009

Toe Walking Continues.....

Here he is, my little ballet dancer. Yep, a few years ago he went to see the Nutcracker ballet and insisted on taking ballet. Why not? Others joked with us because MJ was always walking on his toes and so ballet dancing would probably be almost natural to him.

I stuck him in tap dance too, hoping that it would get him practice in putting his heels down, but he still has that awful habit of walking on his toes.

What do you do about this? If you've read our first post on toe walking, well, this was really what gave us the first clue that something was different with MJ. We've had so many various opinions and advice given to us on what should be done, but in the end, nothing has really changed.

We've been told he walks on his toes because it's a sensory issue with Sensory Integration Dysfunction.

We've been told it's because his heel cords are too tight and so they stretched and casted him for a summer.

We've been told to just do nothing and then when he was 6 maybe they would do surgery to cut his heel cords.

We once had him in physical therapy which wanted him to be in leg braces called DAFO'S. But that never happened.

All in all, it's not something he can't do---walk with his heels down. I mean he can if we sit here and tell him over and over and over again, but what kind of a crappy life is that?

Poor kid used to have to listen to it all day. It was like Hi, MJ, come play, PUT YOUR FEET DOWN, want some milk? PUT YOUR FEET DOWN! Get in the car, PUT YOUR FEET DOWN! And you would have to chant it all day long. I wouldn't do this. I didn't think it was right to have every word coming out of my mouth to my son as PUT YOUR FEET DOWN!!!

We used to have arguments with family members who couldn't handle this and wanted to spend the whole day pushing him down and yelling at him to put his feet down, but it wasn't worth it.

I mean, yeah, we worry just as much as anyone would that this is going to cause problems and hurt his bones or muscles or joints as he gets older, but what do you do?

I liked the idea to force him to walk normally, but the casting didn't work, and do I really want a kid with Asperger's who already has enough to worry about have to go around with leg braces too?

And even if I thought somehow he could be helped, he now knows when doctors are watching him walk that he walks down when they evaluate him, so then the doctors think I'm just a hyperchondriac over my son's symptoms.

So, what to do what to do? Bad habit? Something neurological? Something physical? What really is it, and will it cause him problems?

I know toe walking is something that has been connected to autism, and so is that just an added thing to his Asperger's? But don't we want to fix that?

Or do we? I mean, really, I don't care how he walks if it doesn't hurt him. I mean, I love MJ and so what if he is weird? He has many quirks, but that doesn't make him a bad person. I get angry at those people who are always trying to "fix" my kids' "issues". If it will cause him problems with his health or mentally, or whatever, then we will find a way to take care of it. As for now, it is the frustration still of wondering what IS right? What should we do if anything. We always ask and always bring it up to countless doctors, and so far they aren't so concerned, so we will let it be at that.

And, yeah, being a toe walker gives him those strong calves that the other little ballerinas seem to have a hard time being up and balancing, but our MJ does a great job!

Monday, April 27, 2009

Gifted with Asperger's

Often people have asked us why we don't have MJ in a special school or a separate class. (Of course then there are still a lot of people that don't see anything different with him.) I've gotten some comments even on this blog about how he should be put in a special class where he can have more individualized help.

So----why isn't he?

First off, if you've read our past posts and beginnings, you can know that MJ was originally placed in a full time gifted program. This was something he was placed in because he scored 99% on the tests and ranked within the top 14 kids in the school district.

As we were directed to doctors and counselors to seek out what was wrong, they did a massive amount of testing. At first what came back was how incredibly smart MJ was. The school's special ed teacher explained how he could not even show us the results of some of the tests because MJ scored so high above them that there wasn't even a place on the graph to list him. When we had him tested at the children's hospital for special heath care needs, they told us his IQ was in the "genius" range.

We always knew MJ was pretty smart, but from what these people were telling us, he was super smart. So we know already that he did not fit into a regular classroom. We allowed him to be in this gifted program to fit to his academic needs.

Now, when the school came to us and explained that something was wrong and we needed to get help or figure it out, we were in the gifted program already. He wasn't having problems academically, but the problems were because of shakiness, awkwardness, communication, handwriting, etc.

We are still in the program and MJ has little if any problems with academics. He scores above 99% of the nation through different tests. He reads 200 words per minute. He is very very smart, and so when people comment that he should be removed from the gifted program because he is not up to par, well, it upsets me a little.

I know Asperger's is a little different. It is still a disability. (Now I don't mean this in any way negative because I feel it isn't so much a disability but a different perception on life and thinking and Aspie's are in sort of a culture of themselves.) They allow kids in wheelchairs or deaf or blind to be in a gifted classroom with some sort of accommodations, so I say, what is the big deal to allow a child with Asperger's some sort of accommodations?

He deserves to be in the gifted program just as much as any of his other classmates. So, he has some issues with organization, with speech, with awkwardness, with interpreting non literal things, and then he has a bit of a processing delay, but why should any of these things force him to be put in a special ed classroom?

MJ doesn't seem to fit anywhere. He doesn't qualify for special ed because he is so far advanced that they won't put him there. I don't think it would be a right place for him anyway. We don't want to put him in a regular class because he would be bored. But then in a gifted class he is still having problems not because he isn't smart enough, but because of the speed in which they demand.

The timed tests, the pressure for neat handwriting and fast writing, and the importance of organization are killing MJ. It is not that he can't do any of these things. He just has a bit of a delay in processing, and then he has some fine motor coordination problems that make his handwriting to be extremely unreadable and slow. He can be organized, but he can't remember things very well without being constantly cued.

So---what do we do about it? It is the constant struggle even to know what to do that is frustrating. We turned to the school district right after his diagnosis to see what to do. They told us they didn't care what kind of diagnosis we had, but they would not accommodate any child unless they were failing academically.

So here we were. We had a super smart kid who could do OK in the classroom because even though he was slow, or weird, or had communication issues, or couldn't write very well, he would still be able to score high on tests. But what about letting him live up to his true potential? The specialists told us he scored so super high on all the cognitive and thinking and academic testing, but that his processing level was way below even average. So then what do we do?

The older he gets, the more pressure is put upon him to be faster, quicker, neater, remember things for yourself, understand, etc....

This is why we have been trying to figure things out pertaining to his Asperger's. We do not know what is right or wrong or quite where he fits in. We do not judge any of the teachers or think they are wrong. We just look for an answer and hope there can be a way made for MJ to get the best education he can without so much anguish. So please don't judge us for bad choices or comments we make with this blog. Maybe years from now we'll look back and say it was bad, or it was good, but this is just a journal and a learning experience to us all. Maybe somewhere we could have helped someone else who was struggling with the same issues.

We also maintain a blog relating to being a parent of a gifted child that you can read at www.parentingthegiftedchild.blogspot.com if you are interested in any of those adventures.

Thursday, April 23, 2009

Problems from not Establishing an I.E.P

OK, now before you read this, I am not "bashing" MJ's teacher in any way. We are just trying to figure things out. We thought we needed an I.E.P., but then the school made it seem like things would work out. We've only looked to the school for direction and where to place MJ. We know teachers have enough responsibilities and kids to deal with and they can't focus on just one kid, but we are just trying to see what we can do or what accomodations need to be met.

I thought we had been pretty lucky. We had gotten through 2nd grade without a struggle, and although we were seeing added characteristics of his Asperger's during the summer, we still thought maybe things were going to work out for MJ. We were on the ball and met with the teacher the first week of 3rd grade. We gave her an outline and a list of detailed information about MJ, and we thought things would go well, but soon things went elsewise.

#1-The first month of school I noticed right away that MJ was coming home with tons of homework. I felt bad for the poor kid. He would be doing homework from 4 pm till bedtime. I didn't understand. His teacher said at the beginning that homework shouldn't take longer than 45 minutes, but with all the stuff he had it wasn't possible.

I let it go for a while hoping things would mellow out, but they didn't. I finally emailed the teacher asking what was going on. She emailed back to say that MJ was supposed to be doing these things in class and only taking home what wasn't finished, but I guess somehow he wasn't even getting started on these huge booklets of work.

Well, then what was he doing? I know he has the distraction issue where he could see something on the window and stare at it for an hour, but wouldn't the teacher notice? She promised to keep a better eye on him and for us to let her know if anything got ugly again as far as homework.

#2-Homework wasn't bad for a while, but what MJ was having problems with were these timed math tests called 36's. (36 math problems that must be done in 90 seconds.) We found out about them over the summer and remember I directly asked the teacher how these were going to be worked out because of MJ's processing delay. She said she would try doing some orally, but really it doesn't matter orally or written, there is still the delay. I did not and still do not agree with timed math tests for grade. Sure, I think it's OK to have limits like you can't take forever but making math problems a pass or fail if not finished just seems unfair to me. If they know the facts, they know them. Why must they be timed?

Anyway, he was not doing that well on these. He knew them all and we worked with him daily shouting out multiplication and division problems but there is always the delay. He knew them all, and he wasn't stalling, it's just part of MJ. It takes his brain an extra second to process and verbalize or write. No big deal, but for a timed test it meant a big difference. Pass of fail! I kept telling him it didn't matter if he couldn't pass these off because I knew he knew them all and the tests were just stupid. (Yeah, I know, I probably shouldn't have been giving him a bad attitude, but I couldn't help it. They were unfair for a kid with his disabilities.) I told him I was proud of him no matter what.

He seemed to accept this until he started coming home telling me that the teacher was making him stay in from recess everyday until he passed off every 36 test. So, that meant he was being punished everyday to stay inside and do test after test after test until he could pass them. At this point he had stayed in the whole week so far.

#3-Now, the meltdown---one day in particular I picked up MJ from school and he was in tears. He was super upset because he had gotten in trouble repeatedly enough times that he was in big trouble with the school disciplinary rules. (They do so many warnings, and then you have to face consequences.)

I asked him what happened and he said first his teacher marked him down for not doing his work but he said he was trying but another group was working right next to him and he couldn't concentrate on what he was doing with them talking. (Now it is seriously impossible for MJ to work with a lot of distractions.)

Next he said he got in trouble because the class was talking. (OK, so group punishment, I can handle that.)

But then 2 strikes means you must stay in from recess. So OK, that's fine, but when it was time for recess his teacher came up to him and said "I hope you know that THIS IS RECESS TIME." So MJ, being that he takes everything literal and he must be constantly reminded and cued to remember things, looks at his teacher and takes her sentence as, hey--I need to go to recess now. So he does. And as soon as he does, his teacher tells him that he did not fullfill his punishment and stay in from recess, so he is in trouble a 3rd time.

OK, so it really wasn't a super big deal, but MJ was really upset. I mean, sure he was distracted, but couldn't he move to another place to work? And then if he is being punished, then can't you just remind him "Hey, remember you got marked down twice, so you need to stay in from recess" rather than making some hidden statement about it being recess time now (when you're really meaning, this is recess time now, NOT for you because you're in trouble) and then punishing him yet again for not fullfilling the punishment?

We already outlined all these things at the beginning of the year about
#1-processing delay
#3-constant reminders
#4-the need to be cued
and many many more, but why was he getting in trouble again and again?

I felt so bad for him because he was just crying and crying trying to tell me how he didn't mean to do wrong and he didn't mean to be bad, he just forgot he was supposed to stay in and his teacher didn't remind him and why would she tell him it was recess time now?

So, goes to say, what I thought was going to a smooth year was just getting ugly, and apparently I was dumb to think he didn't need an I.E.P.

I did email her right away and I was actually very nice stating things like, "what can we do to help solve these problems together" and then restating some of the instructions and characteristics of Asperger's for her info. But when she did not email back, I took this as a negative, and a need for me to look for help in other places.

I immediately began contacting the school department head and calling MJ's team of doctors to see how we could go about establishing an I.E.P.

Monday, April 6, 2009


Distractions.......this is usually a bad thing I suppose.

At certain points, I wish I COULD distract MJ away from being so focused in a book, a show, or some blob of super glue stuck to the desk, but at other times, these same things can act as such distractions to him from doing what he needs to be doing.

Homework has been a huge struggle. Well, it is a struggle when you are in a house with 3 other children.

"Do your homework MJ!"
"Finish your work!"

This is just about impossible for MJ to do if there is any type of distraction.

I used to think he could sit there at the table next to his brother and they could both do their homework, but no. If someone else is sitting near him doing some other kind of work, then he can't but help to get involved in it instead of his own work.

I used to think he could sit quietly ALONE at the table and do his work, but no. There might be something stuck to the table that he becomes fascinated over, and then he has to stare at it and poke at it or whatever.

And just about ANYTHING can distract him! We have slowly found that the best place for MJ to work is up in his room at his desk and alone. Of course, this only works some of the time, and half of the time he has found a book or something else to start looking at instead of his homework, but it is getting better.

As far as school goes, we explained to the teacher that he needed to be cued every now and then to stay on track and that there was problems with over focus on something to not allow him to switch to another.

We hoped this would help and that the teacher would remember, but soon MJ would come home with a really upsetting day.

Wednesday, March 18, 2009

To Tell or Not to Tell?

Through all this, we often come to the question of whether of not we should tell people about MJ's Asperger's. Now I'm not going to be one of those moms that broadcast his autism to anyone we encounter on the streets. (Seriously, I have seen a lot of moms come up to me and just announce "My son has autism. That's why he is this way." or "Please excuse him, he has autism!" when there really was no reason to announce it. I was just a stranger and their kid wasn't doing anything weird or wrong.) But, when do I tell others about MJ, or should I tell them at all?

What really are the benefits of telling other people about MJ's Asperger's, or what are the downfalls from telling? I worry about this alot. It seems to me like it is important to tell adults or teachers who will be working with him. I usually just have a small chat with his church leaders or teachers, or new cub scout leaders before he starts in a new group just so they will have a heads up in case there are any problems. I always meet one on one with school teachers and make it very clear that I keep a close eye on happenings at school. Several of my friends know about MJ, and family know, and they are supportive and mostly accepting.

I just worry sometimes if it will hurt things if word gets spread across town that MJ has Asperger's. I don't want him to turn into some freak child that people whisper about behind their back. Like having Asperger's is like "having cooties". Sometimes I worry about those parents I've told about MJ, and if later in life they are going to discourage their daughters from dating him because they wouldn't want them to marry an Aspie. Is this dumb? Or I worry that all these people won't see him for who he is, but only see the label on him his whole life. I want people to know him and love him for him, and not for some pity thing or be stand-offish because they don't want to be around someone who is different.

Before we knew anything, people didn't pity him or anything. We did get a few comments from family and friends about his awkwardness and things he did, but no one really thought it was anything major. He was just a little odd.

When we found out all these things and about Asperger's, we let a few people in on it, and now it seems like people approach me asking, "oh, this is because of his autism, isn't it?" Or I'll hear comments like "he is such a special child". And no one really wants their child to be referred to as the "special" child, when you know what they are really saying. They don't mean special, but they mean disabled in some way.

It bothers me. When we found out about his Asperger's, I thought it was almost liberating because it could explain things better. It was the answer to all our why questions. But at the same time, the label came with all sorts of looks and judgments from others.

I mean, so what if he has Asperger's. So what. Sure, it helps us to know how we can direct things a little better and how his mind works a little differently, but it isn't a bad thing. I guess I'm mostly just worried about his future. I don't want people to avoid him or girls to not want to date him because he is an Aspie.

OK, so I married an Aspie. So. If I would have known my husband had Asperger's before we got married, would I have still married him? Yes. I guess I am worried for stupid reasons. If a girl really loves my son, then I'm sure having Asperger's is not going to matter. Any girl, and anyone could either accept him or not accept him for any reason. Maybe it is just the worry that people won't even take the chance in the first place to get to know him if they only see him holding the "I have autism" sign in their head.

I think it is just that you want so much for your children. You want them to have a bright future and to be happy, and anything that comes in the way makes you worry.

My husband didn't have the label. Did it help or hurt that he was rather just "odd", or would it have been better to have been "Aspie"? He believes his life would have been better growing up if his parents and teachers would have known the difference. But today? He has accepted his Asperger's, he even proudly tells it to others, although he isn't broadcasting it to just anybody. Maybe that's just it. We'll have to continue to pick and choose who and how we tell.

Anyone out there have any input on this?

Monday, March 9, 2009

Realization of Asperger's---Too Many Years Too Late?

All this time while we have been doing the evaluations and testing for MJ, the doctors and psychologists kept on asking questions about my husband. They kept looking at each other with these knowing glances like they knew a hidden secret or they shared some inside joke. It slowly came out---MJ had all these issues with AS, but they were all directly similar to the way my husband acted and thought. And true, as I read all these pamplets and books about Asperger's, maybe the traits didn't fit MJ so much, but they sure fit my husband. It had to be true---my husband was the one with Asperger's and MJ had somewhat genetically inherited it too.

As the doctors said, "the apple doesn't fall far from the tree". This was their confirmation to me that my husband probably had it too.

Now, I had been telling this to him for some time after the initial testings and diagnosis for MJ, but he still didn't really believe it or accept any of it. I think he felt it was somewhat of a disease or something and he didn't want anything to be wrong with him.

Slowly I got him to read some different articles and I introduced him to some other Asperger blogs to show him how much these other Aspies talked and acted like him, and slowly I think he began to see it.

One day he came across one of the blogs on my blogroll written by an Aspie guy who has a lot of great insight. On it he had a link to an online Asperger/NT kind of rating thing. One of them was http://aq.server8.org and another one was at http://www.rdos.net/eng/Aspie-quiz.php . He went ahead and took a couple of these online quizes and was surprised when he scored right into the Aspie range. Still skeptical, he asked that I take them. When I came out so dramatically opposite to his Aspie scores, I think he finally began to accept he was a part of it.

So, yeah, he has never been officially diagnosed, but the doctors and psychologists treating MJ seem to agree, and all these tests point to it, and most of the things we read seem to match right up, what else could it be?

Actually it has been almost a relief to my husband following his recent acceptance. His whole life growing up he felt stupid or like something was wrong with him. It's different if you know you have Asperger's growing up. Then you know there is a reason for your differences or odd behavior. But if you grow up being odd and weird and don't know there is a reason, then you grow up feeling stupid and wrong just because it is your own fault and you just can't do anything right. This is how my husband felt. His parents ridiculed him daily and always let him feel he wasn't good enough. His siblings laughed and made fun of him behind his back. What a terrible way to grow up. If only they had this realization back then, I think his life would have been happier and he would have felt like a better person.

As far as being married to an Aspie, well, I'll tell you it helped our relationship out in huge amounts. When I was first married, the first years were so hard. I couldn't understand how he couldn't see the need to do all these important things. How could he not notice this or that? How could he not think of anything spontaneous on his own? Why did he absolutely hate surprises? Why couldn't he get anything done? Why couldn't he remember things? Why couldn't he talk to people? Why was he so afraid to call people on the phone or ask people for things? Why did he get so upset about little things that didn't seem to be a big deal for me?

We would have weekly fights over all of this. Why couldn't he change? Why was he so obsessed with the computer and how could he lose track of so much time so easily?! Was our marriage doomed? Was I going to have to be more of a mother that a wife?

When we began learning about Asperger's it all began to make sense. I began learning how to redirect my sentences or be more direct in the way I talked. I learned how he didn't know what I was saying when I made little comments about, gee how I wish this would be done, or I made huge sighing noises or faces. If I wanted his help, I needed to be direct and ask for it. If we were going to do something or go somewhere different, I needed to tell him ahead of time. If I was going to paint something different or rearrange the furniture, I needed to give him a heads up.

I do love my husband, and I do not in any way think there is anything wrong with him. I realize and accept his Aspieness and am thankful for the realization to give us a better understanding of one another. I am greatful for his insight when it comes to communicating with my son.

If anything, there are so many benefits to being an Aspie. I know different Aspies have different traits. I don't know about those that seem to lack human affection or sensitivity. If anything, my boys show so much more sensitivity and care for others. They might not know the best way to communicate and they might seem awkward in any conversation, but they truly love and care for others. They just don't always know how to do it properly. Maybe they don't care how they dress or understand why it matters to match clothes, but they are so smart, and really open my eyes to all their insights. I will never be upset that I married an Aspie, or that any of my children inherit it, but I will cherish them and every part of them that makes them the unique person they are.