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

Here's a picture of our little family all wind blown at the park. We look all perfect and happy, don't we? I'd like to think of us that way. I think we function alright even with the quirks and drama that Asperger's can bring sometimes. We've figured out how to make things work or how to be more understanding when they don't. I've seen how my husband has been able to make a life and be successful with Asperger's, and so I've gained hope that my son can do just as well.

However, recently, we've had some struggles.
Our relationship has always had it's challenges. It seems like the first years of our marriage were full of so many fights about how I couldn't understand why he couldn't remember anything or see the need to do this or clean this, or I would get so frustrated when he would get so upset over little social things that I didn't think were such a big deal.

When we figured out that he probably had Asperger's (according to the professional opinion of the team of doctors who were diagnosing my son), it seemed to open up a whole new light and understanding to our relationship. While I would still become frustrated, I knew many of these characteristics or things that were upsetting me were not actually being done to be mean, or hurt, or the result of a husband who didn't care. He did care, and he did want to do better, but there always came so many obstacles.

He wanted to remember to take out the garbage or do the dishes or pay the bills, but he always forgot, or rather he would get distracted and absorbed into some other activity that he lost all track of time. He wanted to take care of things on his own, but he didn't know how to begin if the job seemed too large. He wanted to be able to deal with social situations, but often gave up because he didn't know how to react, respond, or he didn't understand what others were thinking.

So, maybe it was may fault. Maybe it's because I'm such a control freak. Maybe it's a good thing that an OCD control freak got married to an Aspie. Maybe that makes us a perfect match. But for an instant this past month, I wanted to throw in the towel. I mean, to me it seemed like our whole married life I was this big nag. All I did was constantly remind my husband that he needed to do this and that and how and when and why. I pushed him through college, I helped him find a job. I took over the finances when he kept forgetting to pay the bills. I gave up on him not helping around the house because of his lack of knowledge and sense of not knowing where or how to begin a job. I stopped giving him any sort of responsibilities involving the kids because I was tired of them being late or missing events. I stopped working during the week and moved my shifts to the weekends only so that I didn't have to worry about homework not getting done when left to my husband.

OK, so this sounds terrible doesn't it? He does do a lot. He has his good job that he does well at and he is smart and funny and honest and caring. Yet, I was just so tired and overwhelmed. I think I just didn't want to deal with it anymore. Why did I have to do everything? When was it going to be my turn to be taken care of? This is how I felt. I just didn't want to do it anymore.

I started to think about our son and how I always had such hope for him to be on his own, but now all of the sudden I was seeing a different picture. Instead of seeing a future where MJ was going to make it on his own, I was seeing a future where he couldn't possibly do it on his own without the major help of another. Would he be able to get out there and do things on his own without me there to constantly cue him or remind him or tell him how to do everything? As I sat here and looked at my spouse, I was beginning to get very worried.

It must be my fault. I've enabled him in sort of a way. Maybe if I just stopped doing everything then he would have to take care of it on his own. But did I dare? I was afraid the bills wouldn't get paid, kids wouldn't get their assignments done and the house would go to pot. How could I? I guess I didn't really want to give up all control, but I just wanted the feeling that I could if I wanted to. And maybe I just wanted a little bit of help. Some relaxation time. Something.

And maybe I wanted the feeling of knowing my husband could choose to do things on his own without my suggestion. Wouldn't that be nice?

Or look at me? I've sort of developed into a rambling fool! It's probably again my own fault, but I have developed this awful problem where I can't stop talking. With Asperger's, there is a sort of processing delay where the person must stop and process everything before they speak. I often am very impatient and can't handle the long pause after I ask a question or talk, so I will just keep on talking.

I wanted to be loved or surprised or not have to specifically tell my husband of what to do for me on my birthday or a holiday, or how to show me he loved me. It didn't seem so special when I'd been the one to suggest an activity or action.

All these things overwhelmed me and I felt so frustrated and alone. I didn't know what to do, and I didn't like the way I was feeling.

Frustrating as it was, I confronted my husband one night, and as many things I said came out too literal, my poor husband was terribly devastated.

(Sorry to leave you hanging here, but I'll continue in another post. Don't worry, everything gets worked out somewhat.)

Should You Tell Your Child They Have Asperger's?

The years are going by. MJ just had his 11th birthday.
11.
Next fall he will be starting Junior High School.
He's not a little kid anymore.

So, when should we really sit down and have the "You Have Asperger's" talk? Or should we?

OK, now as MJ was first diagnosed with Asperger's when he was 7 years old, he knew something was up. I'm not sure he knew or understood what that something was, but he knew. We've never necessarily hidden anything from him, although I have often chose to talk with teachers and doctors without him in the room as to not make him feel awkward. But, as he has gotten older, I slowly started making him aware that he was a little bit "different".

It seems weird that I am saying this, but thank goodness my husband has Asperger's so that I can somehow connect someone else to him and he can see that it's not some death sentence or anything. About the time MJ was 9 years old I started telling him how his brain was "wired differently than other people". He knows the word Asperger's Syndrome, but the way I explain it to him is that his brain works a little differently and he processes things a bit differently, and there is nothing wrong with it, why his dad has the same thing and thinks the same way and he does OK.

So, this has worked for a while, as we often sit down at the table and have our "Social Teaching Sessions" where I help explain to both my husband and my son what happened during a social event that we just attended that they didn't quite get, or it's where I might explain to them why they were not accepted appropriately or they didn't respond the "socially acceptable" way.

Now, really, I love my boys and I honestly cherish many of their Asperger traits, so I will tell them a lot of the social rules are just plain dumb, but it's the way most people do things and it's just something they have to learn, but I never tell them they are bad or wrong exactly, I just try to show them other ways to behave or respond in certain situations and I try to explain what they can do in circumstances where they are probably not going to understand or figure things out. I'll explain more in detail about some of our "tricks" to overcoming social misunderstandings in another post.

However, things have been getting difficult lately. I don't think MJ quite understands what Asperger's is exactly and I don't think he realizes that it is a part of him that isn't going to go away and that he needs to accept it and figure out how he's going to deal with it in life.

But how do you do this? I mean, how do you sit down your kid and tell them there is something "wrong" with them without telling them that there is something wrong. Does that make sense even? I don't think Asperger's is something wrong, and I honestly don't consider it a disability. I have always said it is just a different way of life, but as my husband, an Aspie himself, tells me that it is a disability, yet it is something that can be overcome. He has struggled as a boy growing up always knowing that he was "weird" or something was wrong or different with him. Why didn't kids like him? What was it that he couldn't figure out? He thinks of his Asperger's as a true disability, but it's not something that is going to stop him from succeeding in life. He finds ways everyday to overcome or challenge his Asperger traits. It's like trying to live normal.

Well, I told my husband that I couldn't do it. I'm the one who has been talking this all up for years trying to gently tell my son that he has Asperger's but it's no big deal because Daddy does too, and they are both just different, but I don't think he is getting it all the way. He knows he has different struggles that other kids don't, but then much of the time I think he may even think it is just funny the mistakes he makes. Who knows, but I told my husband that he needed to be the one to talk to him. It wouldn't be right coming from me. If anyone was going to sit down and truly tell another person that they have this syndrome, or this disability, wouldn't it be best coming from someone else who has lived with it all their life and really understands what it means and how it affects their life?

So, as I'm typing up this blog, my dear Aspie husband is downstairs having a heart to heart with my sweet, talented 11 year old son who also has Asperger's. Yet, this may be the first time he really hears everything it entails.

Super Smart with Asperger's

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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.

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!

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.

The Diagnosis: Asperger's Syndrome

We finally met with the team of doctors and psychologist and this is what came out:

"Mild Asperger Syndrome with associated anxiety"

and also,

"Speech Delay with Autistic Spectrum Characteristics of Asperger's Syndrome"

as well as

"Difficulty with motor movement and hand-eye coordination in terms of handwriting"

These were what were listed on the last pages of many reports after pages and pages of comments and recommendations.

I wasn't entirely surprised. From everything that I had been reading, it fit MJ. It fit my husband. They looked at his younger brother Thomas, who had some of the same traits as MJ. They were not sure now, but they sensed he would have some of the same genetically inherited traits as his brother and dad. That would be something yet to decide.

They told me that I didn't need a long instruction manual. I had been the one who already knew how to deal with MJ and understood his mind.

I already knew if we were going to do something different on any given day that I had to inform MJ ahead of time and prepare him for the change.

I already knew I couldn't tell him a list of instructions, but had to tell him to do something one thing at a time.

I already knew what he did and didn't like. I already knew just because he wasn't looking at you when you talked to him that it didn't mean he wasn't listening.

I already knew he could get lost in a trance at anything distracting.

I already knew he had an excellent memory for facts and could retell anything word for word, but at the same time he couldn't remember to get dressed, eat, do homework, or bring things home without constant cuing.

I was used to his clumsiness and awkwardness and emotions and toe walking.

I knew how he talked and I could make sense of his spurts of language.

It was just now that I needed to take this information back to his school and see what we could do to help THEM understand him the way I did.

Sensory Integration Disorder--what is it?

Of course, even before seeing the therapists, I was on the internet all the time typing in key words trying to find out what was wrong with MJ. I would type in "walk on toes" and "sensitive to textures" or "afraid of heights" and out of everything, this is what I was coming up with--something called Sensory Integration Disorder.

So kids with this have some sort of extra need for like an over stimulus amount of sensory, like they may spin a lot or need to be moving all the time.

OR,

They may have this extra sensitive thing going on that everything is TOO much for them, like they can't handle the way things feel or taste. Well, not taste, but the way the food feels in their mouth. Or they are overly afraid of jumping or climbing or touching things.

Or it can be a mix of the two--an over sensory need AND an over sensitive thing.

This is what made sense with MJ. He could eat foods mashed up--like he would still eat baby food veggies, but if it was the chunks and real, he couldn't handle the texture. He freaked out if anything got on his hands or made him dirty. He couldn't handle tags on clothing, or if his pants or socks weren't perfectly stretched out touching his skin. And then of course he was 3 years old and he had never even been down a slide or swung on a swing really because it frightened him so terribly much.

But really---was this thing even REAL? Or did someone just make it up? It all sounded crazy.