Cured? Matured? Maybe Adjusted?

We celebrated the birth of our fourth child and slowly got back into routine and life with 4 kids. Slowly we could refocus and try to see what was going on with MJ's schooling.

We met with his teacher and she seemed to tell us everything was great. We saw some of his work and his grades, and it looked as if there was some huge improvement. One thing in particular was his handwriting. Before he had shown terrible terrible shaky handwriting, and yet all of his work we were looking at now was super improved.

MJ's teacher said she had seen such a maturing in him over the last several months and that he wasn't having the problems that he had had before. She said he was fitting in well with the other kids, and he wasn't appearing so awkward as last year. His speech was improved and he was really shining as a 2nd grader.

OK, so it was weird. I'm not saying we were upset or disappointed that he was doing well, but it was just so weird that only months before he had been the "what can we do for/how to fix/how to manage" child, to now the "nothing is wrong at all/superstar student/well adjusted" child.

I mean, maybe he was cured? Maybe it was just a maturing thing, like some kids can grow out of their asthma, maybe you can grow out of Asperger's? I still saw him walk around on tippy toes, and I still saw his awkwardness and his speech was still in spurts, but it's not like any of that bothered me. He still had his meltdowns, and he still seemed to fit all those autistic things (don't worry, I'll post more characteristics posts later), but we were used to it, we understood and accepted him. Maybe his class and teacher just learned to take it as a part of him. Maybe they learned what worked and what didn't. I don't know for sure.

So, maybe this was wrong at the time, but I gave up the idea to worry about any I.E.P. and any monthly meetings with the teacher, and I even discontinued the therapy sessions with the childrens hospital that MJ was going to.

Maybe this wasn't any big deal. Maybe he just needed a little growing up to get a handle on things. Well, the year went well for MJ, but we were soon to see things differently as he entered 3rd grade.

Speech Therapy and Inability to Summarize

So, MJ was in speech 2 days a week. I'm not sure really what it could do for him because it seemed to me that it was more of a part of his brain functioning and processing delay that caused him to speak in chunks or spurts or to repeat the same phrases over and over. But I figured what would it hurt, so I let him go to speech and read things to the speech teacher.

He would get little reports home from the speech teacher saying how he was improving with his reading with "smooth talking" as she called it, while I was thinking she needed to work with him more on spontaneous things rather than reading because that's when he seemed to have more problems.

But anyway, this is when I found out something quite incredible.

For years I had known that MJ had this super memory and was really smart. I remember he would always be reading some 500 page book when I'd take him to the store or wherever, and I would cringe when people asked to tell them about his book because I know he would tell them word for word the entire book chapter by chapter! Well, not quite, but he would start telling them detail per detail about almost everything and it would take a good half hour minimum for him to answer. I know they were probably looking for "it's a book about this boy and a dragon" when he is going to tell the entire storyline to them. I guess I find it quite funny now.

But anyway, MJ would bring these speech homework sheets home where he was supposed to read this page long story and then in his own words tell me back the story using "smooth talking".

Now these were maybe 5-6 paragraph short little stories, and I'll emphasize that he was supposed to summarize in his own words, because it just amazed me what he would do.

There would be a story about Bob and his grandpa and how they went fishing and the boat wouldn't start and how they were scared and blah blah blah.......etc.......until they figured out what to do and got home. Anyway, Micah would read it just once for the first time, then I would take the paper away and wait for him to retell me the story in his own words.

The only thing was he couldn't do it. Now, I don't mean he couldn't, but he could not summarize in his own words, and it was somewhat amazing.

Here I was holding this paper and MJ would retell me the story almost word for word EXACT to what I was holding in my hand. Like he was doing the speaking part and even saying "said Grampa" and something something something, "Bob cried". It was as if he had the paper and was just reading me the whole story all over again, but this was from reading it once and it was memorized or something. It was incredible!

So, I began taking notice that really this was a part of MJ that if you asked him what he did today, you wouldn't just get the "we went on a field trip and I played outside", but instead you would get a layout of everything he did from the time he hung up his back pack to come home from school.

Maybe it was our fault for not explaining exactly what we were expecting, but that's a part of this whole Asperger's thing. It's like you asked me the question, now why don't you want to hear me answer? (Don't worry, I'll get into this a little later.)

Speech went on and I suppose maybe MJ got a little better at his talking, but I'm not really sure. I didn't know if it was something that could be fixed like that of a lisp or a natural stutter.

Starting 2nd Grade---Promises Not Kept

So, over the summer we met with the team of doctors and kind of put the appointments on hold. From what his teacher had told us, it looked like the next year of school was going to work out. Supposedly he was going to have an IEP set up in the fall and we were going to be meeting with the teacher the 1st week of every month.

Well, he started school, and he was in 2nd grade, but he had the same teacher because his class was a combined gifted 1st/2nd grade classroom. The first month went by and I didn't hear anything from the teacher about meeting or setting up something. I was patient. I figured I'd let school get going first.

Then another month was slowly creeping by, and by now I figured no meetings or appointments were going to be made. Maybe they weren't needed? From last year's "special ed" meeting, they had put MJ into speech, and a speech pathologist was working with him on a weekly basis, but besides that, there were no other accommodations made.

OK, maybe he didn't need any. Maybe everything was working out. Maybe I was still in denial. Maybe I thought MJ didn't have any problems anymore. Maybe he had grown out of it?
I suppose I should have been the one that requested a meeting, or said, "hey, didn't you say you were going to do this or that, or what about that word processor thing?" But at this time in my life I was 9 months pregnant and expecting our 4th child. I didn't have the energy, so I just waited to see if I would hear anything.

Super Focused---Good or Bad?

One thing that I find really frustrating, is how hard it is to get MJ's attention. A lot of people could think it is an ADD thing that a child won't pay attention and is focused on something else, but it is a little different with Asperger's.

I've had a hard time when I'm talking to him or teachers are talking to him and he is so focused on some picture on the wall, or some glue stuck to a desk that he isn't paying attention. He hardly looks at us when we're talking to him (but that is a story for another post), although I am often surprised when I think he's not paying any attention or listening, but he can recall everything I've told him.

With Asperger's you have a sort of great ability to be super focused on something. It can be great that you can accomplish a lot because you don't lose focus, but at the same time, it can be bad if you are focused in on the wrong thing.

Like, great, you are focused on doing your work, and that's wonderful, but what if you need to focus on something else now?

Or, what if you need to be doing something else, but you are too busy focusing in on some weird design or sound, or something else, that you can't do your work?

It can go both ways. With MJ, one of the comments that had come from the teachers was that he was supposed to be doing his work, yet she could see him staring at the wall for a half hour looking at who knows what and then get nothing accomplished.

One of the tests they did was on MJ's auditory processing. They told us that he had some sort of a right ear advantage that interfered with the way his brain processed things. Basically this meant that he must be cued in before being told anything important.

OK, so I already knew this---I had been dealing with getting him cued in for years, but it was nice to be able to tell the teachers that this was a real medical thing and they needed to touch his desk or make sure that he is focused on them ready to take in the information.

So, hyper focus, good or bad? It can be good as long as directed in the right place and if we can cue him in at the first place.

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.

Meeting With the Neurologist

We met with a pediatric neurologist a little after MJ turned 7 years old. We sat there while he analyzed different things and examined MJ and waited to see what he'd say. After the hour long examination/meeting/whatever it was, we got sort of an instruction list of what needed to be done.

According to these neurologists, they thought MJ had a PDD (Pervasive Developmental Disorder) or possibly Asperger's Syndrome both of which I had no idea what they were. They wanted us to meet with a team of psychologists and psychiatrists to evaluate MJ.


BUT, they also wanted to do an MRI to eliminate any other possiblilities,

AND they also suggested having MJ relooked at for physical therapy and possible leg braces to correct his gait.

So, we scheduled an MRI for later that month, and also scheduled an appointment with the department for Children with Special Healthcare Needs to have him evaluated for whatever those things were.

The MRI came out clear, not showing any abnormalities, but the other appointment wasn't for a couple months. So in the meantime, I began researching anything and everything I could find about PDD or Asperger's Syndrome to see why they might think our son had it.

The Meeting for Special Ed

So, here we were, MJ was in this new school in an advanced class of 1st and 2nd graders and yet we got the letter home asking us to come to a meeting to discuss special ed services. I remember looking at the letter and thinking, "What is this? He's in the gifted class? What do they mean for special ed?"

We went to the school and met with his teacher, the speech pathologist, and the special ed teacher. And then it was like this out of body experience or dream or something where they began telling us that "something is wrong with your child" and they didn't know what but we had better go get it checked out.

Yeah, they knew he was smart, but his teacher was telling me that he was having a terrible time with speaking and writing, and it wasn't just something that she thought was normal. She said when she watched him write it was as if he physically could not do it like it was all shaky and forced. And then she was saying how awkward and clumsy he was when he walked. Also, she was saying that his stuttering was so bad that the other kids in the class weren't making any sense of what he would say because all his ideas were so stuck.

The special ed teacher and his teacher began throwing out things they thought was wrong like a previous brain injury and all this other major things and we were sitting there in almost a shock thinking WHAT?!

Mainly they were wanting to set up something for speech for MJ, and then they also wanted to have an occupational therapist check him out, and the special ed teacher wanted to do all these tests, but they were saying, why just put him in speech, when they thought there was an underlying reason behind the problems.

We left with his teacher telling us we should take him up to the children's hospital and figure things out for ourselves.

So, with that---that is what we did. We first called our pediatrician who referred us to a pediatric neurologist and we made our appointments wondering what would they would say.

Gifted?

So, by now, I figured MJ had all these little quirky things about him--the toe walking, the pickiness, the timidness, the stuttering, but it wasn't that big of a deal. Actually, what we were noticing now was how smart he was. I remember he was barely 4 years old and he was reading.

When he entered Kindergarten at age 5, he was bored to tears. He was reading chapter books but couldn't stand school where all they did was color, sing and learn about the ABC's. The teacher had him reading these "BOB books" which were like "see kit run, Max can jump, Pat is glad" and he was hating it so badly. He was so bored with these books. He was reading Harry Potter at home. Instead of just reading the BOB books, I would quiz him on pointing out the verbs, adjectives, nouns, and punctuation, just to get him something else to learn.

He was also bored in math, which in Kindergarten was counting to 100, while he was adding and subtracting double digit numbers and multiplying a little. Just things he liked to do. I remember him telling me one day what a solid, liquid, and gas were. And it wasn't basic. I can't remember exactly what he said to do him justice, but it was about the molecules and how they were condensed or something. Myself, I would just say hard, like a drink, and ??

I didn't know what to do. He would get up in the morning and say he didn't want to go to school because he hated it so much. It was so hard to see him so sad. I tried to talk to the teacher to see if he could do anything more advanced and she said her hands were tied because she had such a large range of abilities in her class and she couldn't go ahead if she still had kids that would say the #3, but hold up 2 fingers.

But, come February, we got a letter in the mail inviting MJ to be tested for a separate full time gifted program to start in 1st grade. We went ahead and let him test, and when the scores came back at 99%, he was invited into the program, and we accepted.

So, yeah, maybe we had this quirky kid, but he was pretty smart, and starting at 6 years old he was put into a new school in a class with 1st and 2nd graders. So maybe he didn't have problems, maybe he was just gifted? Little did we know that in just a few months we'd receive a letter home from the school asking for an evaluation for special ed services.

We have another view of all this and share our experience with the challenges of raising a gifted child at www.parentingthegiftedchild.blogspot.com

Stuttering

So, besides the whole toe walking thing and afraid of playground equipment and somewhat oversensitivety to textures, there wasn't anything too different that I noticed with MJ. The only other thing was that he stuttered.

We began to really notice this when he began preschool at age 4. The teachers gave us some informative papers on stuttering and said they mentioned him to the speech pathologist.

It wasn't that he was a traditional stutterer. He didn't repeat syllables or get stuck on a word or sound. Instead he would repeat phrases over and over like he couldn't get the whole sentence out. Like he might say:

"Today, today I, today I went, today I went to the store."

We weren't too worried, and the preschool teachers didn't seem too worried either. They said that it was common for preschoolers to start stuttering because they are taking in so much information and learning so fast that there is just so much in their heads and it gets jumbled when it tries to come out by speaking.

So, I didn't worry, and we continued to work with MJ at home as far as stretching his heel chords, and we already knew what foods we could get him to eat.

Toe Walking

Well, at first we thought the whole walking on toes thing was because just a few months prior, MJ had stepped off of the bed funny and broken his leg. Maybe while his leg was in a cast, he was stepping on his tip toe with the other foot to even things out, and then he just got used to doing it. Well, maybe. We know he did not start out walking on his toes when he first learned to walk.

We went to see a physical therapist and occupational therapist. The physical therapist tried to work with MJ on his balance and coordination and tried to get him to walk heel toe instead of toe only.

This didn't do much good. It was only by constant reminders that he would put his feet down, or if he knew you were watching his every move. It didn't matter much to me that he walked a little funny. So what. My only concern was that it would cause him problems later in life with extra pressure on his knees or calves, or maybe the tendons in his ankles would grow short. We took the PT's exercises home and eventually quit therapy when it was getting too expensive and our insurance changed.

We went to see an orthopedic specialist because the pediatrician kept telling us eventually we'd have to do surgery on MJ's heel chords to make them longer, and we thought we'd get a 2nd opinion.

The orthopedic specialist suggested an idea to cast both of his legs in a 90 degree angle to force the feet to be flat for a short time to give his ankles more flex. We thought this was less invasive, so we went ahead.

Here we were over the summer with MJ's 2 legs in walking casts. Let me tell you, that was a fun time! The furniture still shows wear and tear from this time.

Then when it was done, the casts off, and did it change anything?

Yes, his heels showed more flex and things measured better, but did it stop him from walking on his toes? Nope. It continued on.

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.

When Do You Notice Something is Odd About Your Child?

Everything is normal, everything is fine, you think. This is your first child. Checkups at the doctor are fine. Maybe he doesn't start to crawl until almost 9 months, and maybe it is funny that he does a 3 legged crawl while dragging the left leg. And then maybe he doesn't walk until almost 16 months, but so what. And then maybe he doesn't talk until 21 months old, but no big deal, because it goes from first words to full sentences in less than a month. This really isn't anything. There are slight struggles with eating, and he seems to have a problem with certain things touching him, but I guess that's just him.

One day he is 3 years old and you sign him up for gymnastics. As he runs around with the other kids the other parents and teachers begin to shout out "Hey! Look at that kid! Look how he runs around on the tips of his toes! Wow! He must have super strong calves!" And then as all the other kids are climbing up and over things, your son won't even climb a ladder because he is terrified.

So all of the sudden, something is different. When did he start walking on his toes, and have I never noticed it before? This wasn't just sometimes. This was all the time and always. He hardly ever was flat footed. He stood on his toes, he walked on his toes. Hmmmm.......

We took him to the pediatrician who threw out wild ideas like Spinal bifada and MDS. She had him tested, but he was fine, so she referred us to a physical and occupational therapist.

At this point he was 3, and he was diagnosed with something called Sensory Integration Disorder.

Beginning of our Blog

When does it start? Do you notice if you've never known anything different? Our first child was diagnosed with Asperger's Syndrome at the age of 7. But how did we get to that point? What were the signs and what did we miss?

This blog is to be a help to other parents who might have the worry something is "different" with their child, or maybe to those whose kids who have already been diagnosed.

This was our first child. What did we know if anything was right or wrong or weird or not?

This is our story of our son MJ and how we came to terms with his Asperger's and the long years of trying to figure it out. This is also to be our continued journal of what the future may bring.