Transitions

I realize I've been telling this story of how we found out about Asperger's, but I haven't really described all the things about MJ that pointed the doctors to this diagnosis. I've talked about his communication issues and his toe walking, but I've only slightly mentioned some of the other things. I guess I didn't mention the other things because these were all just characteristics of MJ. I figured every kid was different, and these were just the things that made him unique. Little did I know that these particular things put him in a group on the autistic spectrum. One at a time I'll explain some of these things.

The first thing I'll describe is transitions.

MJ could not handle any change from routine or schedule.

Sundays the kids go to church class, then to a group room with all the kids for singing time and a group lesson or game. One Sunday in particular they skipped class and had the kids all go straight to the group room to practice singing songs and MJ totally shut down. He sat there and looked like somebody had died--tears streaming down his face. Normally an enthusiastic singer, this time he wouldn't respond to anything or anyone. And why? Just because they skipped class. Another time they just changed the chair arrangement to a circle instead of rows, and he wouldn't talk, wouldn't sing, and refused to do anything. Just because of circle chairs!

At school, there is in day and then outside day for recess every other day during the winter. One day when I picked MJ up from school he was so emotionally upset rambling about how the kids wanted to have in day instead of out day and now the whole week was going to be off and how horrible that was and the world was going to end.

When I pick MJ up from school, I MUST drive STRAIGHT home. Any detours, or errands, or different routes are just too much. He will freak out. Even if we're going to go somewhere fun, it doesn't matter. He can't handle it. Like I know he loves going to the library, but if I get him from school and say we're going there BEFORE home, then he won't do it. I always joke that one day I'll pick him up and say we're going to Disneyland and he won't want to go.

Now, all these things aren't terribly hard to deal with. The teachers at church learned that they need to tell us ahead of time when they are going to rearrange the chairs or skip class. And I knew I had to tell MJ the daily schedule in detail especially if it entailed anything different. Yes, sometimes I needed to take a detour after school or change things around, and I still did them. MJ would have his little freak out, but I could deal with it. I didn't think it was that big a deal, but this was just one of the things I learned MJ freaked out a little more than your average kid.

The Plans

When we met with MJ's teacher at the end of the year parent/teacher conference , she had all these plans for what she was going to do next fall. (MJ was in a full time gifted program where he had the same teacher for 1st and 2nd grade, so she would be his teacher again next fall.)

She said over the summer she was going to figure out this sort of word processor thing to see if MJ could use it to help get some of his assignments completed faster. She said she would set up an IEP in the fall and she would set aside one day the first week of the month to meet with us to discuss any concerns or answer any questions.

So, it sounded good. It sounded like he had a rough year trying to figure out what was going on, but now we knew, and next year would be good. We would be meeting more with the psychologists and pediatricians over the summer and be receiving more insights to help MJ.

And going into 2nd grade, was it good? Were all these things followed through? Were there any accomodations made? Was MJ improving?

Well, yes and no. It was interesting to see how things changed in 2nd grade.

The Ugliness and Misunderstandings

So, shocked and surprised MJ's teachers didn't respond as I thought they would, I went and talked to the Special Ed teacher. I told him how I thought it was dumb that the district didn't care about accommodating a child with high functioning autism unless he was failing. So what if academically he is doing "alright". "Alright" is fine, but from all the tests they had done with MJ, they had come to the results that his intelligence was within what they called "genius range", and so I thought--let this kid live to show his full potential!

MJ was in a gifted program, but I know he would soon fall behind. He could not communicate smoothly or fast enough. His handwriting was terrible and so slow that he could not finish assignments on time or finish in class. He needed to be "cued in" before explaining any important information or else it would not register with him later.

I remember earlier, as they were coming to a possible conclusion of Asperger's Syndrome, that when I told this to the teacher, she immediately disagreed. But it's OK. There are actually a lot of variations of Asperger's Syndrome. It doesn't always mean you are antisocial or only smart focusing on one subject. It can have all sorts of characteristics.

But now, here we were, and this was the diagnosis, and why did she want me to figure this out, when she wasn't going to accept it in the end?

I talked to the Special Ed teacher about the lack of response from MJ's teacher, and he suggested making some sort of a notebook to pass to and from school as a communicater between the teacher and me. I thought this was weird somewhat, but I left and figured something might get passed along to the teacher.

And yes, I received phone calls and a letter--all which made me feel dumb and embarrassed, but MJ's teacher said she didn't read the paperwork and emails and reports as being a final diagnosis. She thought they were still trying to figure things out, so that is why she didn't respond much. (Of course, having a form of autism will be a lifetime of figuring out things, and this is only the beginning, but it is enough to want to start something in the school system as far as restructuring some things.)

I felt bad I had created this sort of ugliness and tension between us, but I was angry that after sending in pages of medical paperwork and writing a super long email, she had come back with so little. She apologized up and down, and being that it was nearing the end of the school year, she made plans on what she would do for MJ starting next fall.

Informing the School

So, we took all this paperwork and went to MJ's school. We gave it all to the teacher, and we emailed the speech therapist and talked to the special ed teacher. And then we waited for a response.

And then, to our surprise, we didn't get one. Well, we got a short email back saying something like "thanks for the email and let us know of anything if it pertains to the school setting".

And I was angry and frustrated. Here we had all these teachers and people telling us that we needed to go get MJ checked out, and then we did, and we got an answer, but then it was like nobody cared. I was like, "Hey! YOU are the ones that told us to see what was wrong, but in the end you don't even want to hear it?"

So, being upset and angry, I surpassed his school and went right to the school district. I called up and talked to the district coordinator of children with special needs. And then I was more shocked.

I explained to her how MJ had been diagnosed and I was wondering how his school plan was going to change to help him. Yes, he was smart, but he was having difficulties with writing and speaking as part as his Asperger's and it was taking bad effect at school toward his performance. I wanted to know what I was supposed to be having take place. Like, isn't he supposed to have an I.E.P (specialized individual education plan) and isn't he supposed to have some sort of accomodations if needed now that he has been through all this medical testing and they have officiated an answer?

The district coordinator basically told me that it didn't matter what medical diagnosis anyone had, but that they would not do anything as long as a student was not failing. So, since MJ wasn't failing, then why should he need any changes in the classroom?

I was extremely upset by this woman. Basically, I can have a super smart child who will never be able to show his full potential because the school district won't allow him to produce his work by any other means (word processor, computer, typing, giving extra time, testing orally, etc...) except for the normal rules for any normal student.

No, I didn't want MJ to get special treatment, and I didn't agree that he should not practice his handwriting and go to only typing things, but I did think that some things needed to change or be allowed so he could perform better at school.

To me, it was like having a Stephen Hawking but not allowing him to be in a regular classroom or to use a computer to speak. Yeah, I'm sure he could just go on doing so-so work and not finishing assignments because of his processing delay and coordination issues with handwriting, and not being able to answer questions in class because of his language issues, but if he was really so smart, then why couldn't they let him be able to show it?

OK, so I was somewhat jumping the gun, being that I had not had a real 2 way discussion with the teachers at his school yet, but I was just surprised by their lack or reaction and then the district rules seemed so dumb to me.

So, I went back to the school and went straight to the Special Ed teacher who had been best to help before.

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.

The Autistic Spectrum

Do you know there is this whole "spectrum" thing when it comes to Autism? Yeah, I've always thought autism is where the kid doesn't talk hardly at all and sits in a corner and doesn't react to any human contact or something, but actually there are all sorts of degrees of autism that we learned while we were being evaluated. It is this sort of swinging pendulum that you can fall anywhere in a certain range and still be considered "being within the spectrum" of autism.

We went through a lot of specific tests and questions that were rating MJ on this kind of thing. And this is where things became very interesting.

Sure, I figured it was normal all the things MJ did. Well, maybe not normal, but I just figured he was an extra sensitive kid, or just extra observive or picky or emotional. Then when they started rating our responses, I began seeing that other kids really weren't so freaked out by transitions or by certain changes in routine or schedule. Other kids weren't lost in a trance looking at a glob of glue on the desk for an hour, and other kids weren't so obsessed with lining up things in rows and such.

I guess maybe I had realized something different recently---Well, MJ was our first child, and I just figured this was fine the way he talked or acted or whatever, but over the last years since school started for him, I began to take notice that he didn't respond the same way as the other kids did.

Like even in Kindergarten, all the other kids were talking one on one with others, and when they left to go home they all hugged the teacher or high fived and said goodbye as they left the door, whereas MJ was like a robot and would only react socially if I specifically instructed him to do something.

He had friends in K and 1st grade, and when I saw them communicating with their parents or siblings or other friends, it was a dramatic difference in how little I was getting from MJ. Not bad, not really less, but just different. It was as if MJ's ideas and thoughts came out in jumbled bursts as if you were watching somebody who had been in a war and was having "flashbacks" or snipits of something. It's hard to explain.

BUT anyway---we were answering all these questions and beginning to see that we were measuring on this autistic scale, and it was an eye opener. It was not high on the scale, but it was still there.

Does Dad have Asperger's?

So, while they are doing all these tests and evaluations, the doctors begin asking me about my husband and certain specific things. And, in between all these appointments I've been reading up on this Asperger thing and I've started to notice some interesting things.

Maybe not all these characteristics of Asperger's fit MJ, but as I read more, it was like everything I was reading fit my husband to a T. It was a huge eye opener. All these things, these patterns, these weird social things and the way he was. It was my husband!

The doctors began saying that many of these characteristics of MJ and the way he behaved, thought, and functioned were a direct genetic inheritance probably from his dad. As they said it, "the apple doesn't fall far from the tree".

And all at once I felt bad. I felt bad for all the years of being married and wondering what is wrong with my husband?! I felt bad for being so angry at him all the time, and for the frustration I've had. Why doesn't he see the need for this or that, or why does he have to be cued for everything, and why is he so afraid to talk to people or call people on the phone, or is he so obsessed with the computer? And what is that strange flapping thing he does with his hands sometimes, and how he unconsiously chews at his cheek.....this wasn't just my imagination, and it wasn't just to be excused as part of the "male laziness syndrome" but my husband had a form of autism, and I had no doubt it was true.

So, as we waited for the final decision on MJ, we already began taking in all the advice not only for him, but for my husband as well.

Tests, tests, and More Tests

For the next little while MJ began taking all these tests. The Special Ed teacher at school was testing him on all his cognitive abilities as well as motor skills assessments and other stuff I'm not really sure of. We also met with a team of pediatric psychologists, psychiatrists, and pediatricians who tested MJ in a number of other things.

Of course, then there was all these tests for us. Well, not exactly tests, but we had to fill out pages and pages of evaluations, questions and answers to what MJ's personality was like, how he reacted to certain situations and a whole lot more.

And, in the meantime, I was researching everything I could on Asperger's. I found out that PDD means Pervasive Developmental Disorder and that Asperger's isn't separate from PDD, but it is a type of PDD which is a form of autism--high functioning that is.

One thing worried me a lot though. Yes, there were all these tests MJ was taking, but a large amount of what they were going to use to diagnose him with was these questionaires we were filling out. What if we didn't answer them the right way? What if in a sense, WE were the ones who were going to make whatever diagnosis be what it is by the way WE answered?

I asked this a lot to the doctors. They didn't make me feel much better, but they said that really if anyone knew our child best, it was us, and so yes, in a way we are diagnosing our own kids, but it is balanced with the doctors findings also.

So.....we continued to talk and fill out forms while they tested MJ's abilities and even auditory processing, and we waited to see what they would say.