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!