Wednesday, November 3, 2010

Using a PDA for help with Asperger's

For the past many school years one of MJ's biggest challenges was organization. It wasn't that he was so disorganized, but that he couldn't remember where he put things, or rather the bigger problem was that he could never remember to turn things in or bring homework home.

Part of his 504 Accommodation Plan had listed that he needed to write down all his assignments in a planner and then his teacher needed to review it with him at the end of every day and make sure he was getting everything needed into his backpack.

Now, this really wasn't working. Yeah, maybe the teacher would make sure and check off his planner, but then he would still get home from school day after day not having the book or worksheet that he needed to do. Plus, if he did bring it home and completed his homework, who was to know if he actually remembered to turn it in in the morning? It was so frustrating! I was going back to putting duct tape across his shirt that he couldn't remove until he put the assignment in his back pack or turned in something to his teacher.

Now, I wasn't frustrated at the teacher. I mean, I was asking a lot to have her have to give MJ extra attention to make sure he was taking home and turning in assignments, checking a planner, etc. I was more frustrated because it wasn't going to solve anything for MJ. Was this going to be his whole life? I didn't want him to have to rely on other people to get him to remember stuff for the rest of his life. Plus, it put a lot of burden on a school teacher who already has 25 other kids in a classroom. And, on top of that, what would happen next year when MJ goes to Junior High and has 7 different teachers? Would they all have to have special instruction to help MJ?

We are all about self management and independence, and so we began to think....what could we do? For my husband, also with Asperger's, he had the same problems with remembering things as MJ. I swear he could not remember to do anything if it weren't for his smart phone that he had programmed to beep at him and alert him whenever something needed to be done.

Well, that was it then! OK, so the school systems don't allow cell phones so how would we make this work?

Years ago before all the fancy phones came out, my husband bought a PDA for himself. For those of you who don't know what that is, it is basically a personal hand held little computer that can do anything from have the internet to be an alarm clock, play music, be an organizer, and more. We actually still had it and thought it would be awesome for MJ to use this to cue him during the day.

Now, how about incorporating it into the school? He didn't need it to play songs, have the internet, or play games, and for sure the school was not going to allow that. All we really wanted was it to have a way for MJ to enter in important information like homework assignments, when things are due, but then most important--a way for it to remind him when he needed to do something at school. The problem still would be if he would actually remember to program it or read the to do list.

Well, we decided to set up a sort of alarm system that would beep at him and he would have to take it out, read it and then turn it off. It couldn't be loud, and we didn't want it to distract the class often, so we set up 3 specific times to beep:

--Morning right after school starts--remind him to turn in all assignments

--Right before lunch---remind him to go the bathroom (Yes, I know this seems dumb, but seriously sometimes MJ is so involved that he can't even remember to go the bathroom and that makes for big problems later.)

--And finally, right before the end of school bell rings---remind him to get all assignments into backpack (He enters more specific when he knows what they are.) and then certain days when he has after school activities it will alert him when he is to stay at school instead of walk home.

We had presented the idea already with the Principal and the new 6th grade teacher, and they were OK of the idea so we sent him off to school to see if it would work.

Well, win some and lose some---there were some days when the battery was too low, or other days when he forgot to program something, some days he would forget to take it to school all together and we joked that he needed a PDA to remind him to remember the PDA! Overall though, I think it was helping. Some days it was frustrating that he would lose points on assignments because he had not remembered to bring something home, but it was because we weren't aware of it to program it in the PDA.
Over time I think he began learning when he needed to enter in new assignments or daily reminders based on what he needed to have done every week.

So, maybe this was going to work. No, a PDA is not fool proof, but it's something that can help gain independence for someone with Asperger's. It's maybe sad to think that he may have to rely on some computer to tell him when to take a shower, go to school, do an assignment, go here or there, but is it any different from anybody else that has a to do list, a personal planner, or something else to remind them?

I guess with Asperger's the difference is that a regular person would see the need for the basic stuff---like the need to take a shower, to go the bathroom, to eat, to clean up, when a person with Asperger's may not always realize the need until it is pretty far messy, stinky, or now they will have to rush to the bathroom. Not everyone is like this with Asperger's. I'm pretty sure my husband is a pretty clean person and takes daily showers and eats, and goes to work and yeah, he will clean up about the time he can't see the floor anymore or do some laundry when he doesn't have any more clean underwear! I figure he is very scheduled with most of his things though. There has to be a time for everything.

Sunday, October 24, 2010

Another Aspie? Patterns and Early Signs of Aspergers

This is our youngest daughter, Rose.
She will be 3 years old in a couple of weeks.
She has always been a little more solemn and reserved than the other kids.

When it is your first child, you might not think anything of it, but when you have already had other kids and you have seen the difference in a child with Aspergers and a child without, things will become more apparent.

Now, we don't know for sure that this little cutie has inherited the Asperger gene, but there seem to be so many signs. She seems so similar to her oldest brother with Aspergers and even more strongly in some characteristics.

From very early, even 4 months old we began to see some signs. I remember going into her room and seeing her in her crib with all her dolls and stuffed animals lined up exactly every 3 slats inside her crib. It was weird. It was so meticulous to detail.

As she began crawling we would see new patterns created in her room. All the books and toys would be arranged across the floor in rows and squares and lined up.

Now, we're not saying this is a huge deal. Many kids out there like to stack and line up toys, but it is just something a little almost obsessive about the way an Asperger child will arrange things. They don't just play with the toys, they seem to pose them all and they have to be a certain way or else the child will get really upset. I remember my oldest freaking out because he needed all his action figures posed in an exact way or else he would become so upset. He was only 18 months old but was so upset because I couldn't figure out the exact millimeter of degree that a startrek figure's arm was supposed to be pointing.

Everywhere we go little Rose will line things up. In nursery classes the teachers are astonished and take pictures with their cell phone how bizarre it is. They showed me one day a picture of how she had taken every doll out of the toy sections and lined them up across the entire play area from one wall to another.

I wish I had a picture to show of that, but here are just little instances of her patterns that I have caught:

Above, lining up the snappy dolls....and below what she does with magnets on the fridge:

It is funny because whatever she is doing she has all mapped out in her head and if you were to move one of those magnetic letters she will freak out screaming and crying until it is exactly back to the way it was.

In many ways we have seen the signs similar of her brother. She doesn't respond to others very often. She has always been so solemn around others; hardly smiling, not talking so much, we have to instruct her to say hello or goodbye or things like that. There is little emotion.

She plays so much more alone and by herself. She has everything all worked out in a sort of play or storyline when she plays with her toys.

She walks a bit on her toes like her older brother. We hope that will not continue. It has caused a lot of problems with her brother.

She gets easily upset by change of plans and transitioning from one activity to another.

She gets very upset about different textures or when clothes aren't fitting a certain way.

We just kind of sit back and observe and wait to see what comes of her personality. It's not a big deal to us because she seems so much like her siblings, and she is such a cute girl. It is only when we are out around other kids her age that we see such a dramatic difference. The other kids are so bubbly and talkative and then she is just staring blankly into space while their parents look at me and think something is weird with my child or that she must be so much younger than she really is.

Well, at least we know how to work with Aspergers and how to make sense of their world somewhat. It doesn't scare me or make me feel bad that another family member might have Aspergers. We just take things a day at a time and we know maybe this time we'll have more knowledge to help us have a better understanding.

Thursday, September 30, 2010

Introducing Asperger's to the 6th Grade Teacher

MJ has skipped a whole grade and was starting 6th grade this year. Skipping grades with Asperger's? It might be extra challenging.

Usually the way things went, we were to supposed to set up or review his 504 Accomodation Plan through the principal, and it is signed by parents, teachers, and student involved. His plan was set to be renewed last May, but the principal was leaving the school and decided it was best to wait to renew it in the fall with the new principal and new teacher. So that is what we were waiting to do.

This time, however, I decided to do things differently this year. In the past we had always met with MJ's new teachers to discuss his Asperger's, but usually it was after the first week of school. It had seemed OK, but things were different this year. Rather than make an appointment to discuss things with the new principal, I decided to go to where things really mattered first. I decided to set up a meeting with MJ's new teacher first, and also, to meet with her before school even started. She was the one who was going to be directly involved with my son, and so I felt it best I talked things over with her first. When we initially set up MJ's 504 Plan, I felt embarrassed, if not guilty, the way it was all set up by the Principal and school counselor. It is all school protocol, but I felt like the teacher was just brought in and told what she was going to do without having much input on the situation. So, I figured I'd at least give the new teacher a heads up on this new student. Plus, it would be nice to see what she thought of everything before approaching the principal for renewal. So, I set up an appointment for a week before school started to meet with MJ's new teacher.

Now, maybe I was going overboard, but I typed up a list of 12 things entitling it "Differences With Asperger's Syndrome Specific to MJ". I mean, I wasn't going to leave any questions unanswered, and I figured it would be a sort of guideline/help for the teacher if any problems arose. I hope it wasn't too much, but here is what I listed:

1-Lack of Eye Contact
2-Difficulty in Remembering Basic Tasks
3-Difficulty in Cognitive Listening
4-Misunderstanding of Social Norms
5-Lack of Emotional Response
6-Inability to Understand Non-Literal Communication
7-Processing Delay
8-Difficulty in handwriting and understanding Spacial Relationships
9-Misunderstanding of Personal Space
10-Problems with Gross Motor Skills
11-Difficulties with Transitions or Change in Routine
12-Difficulty with Communication

Now, along with this list, next to each characteristic I explained what I meant and some of the solutions that we have created for better self management. I explained which characteristics had specific accommodations already set up in his 504 Plan, and also gave a few suggestions of what worked well with MJ.

MJ's 504 Plan had 6 key points:

1-Preferential Seating closest to the teacher
2-Allow extra time on written assignments, or limit the amount
3-Cuing MJ when invading personal space
4-Allowing the use of graph paper for written assignments
5-Cuing MJ when not talking appropriately (slow down, softer, louder)
6-Helping MJ with communicating assignments and getting all needed materials home

Pretty much we weren't going to be changing anything with the 504 Plan Renewal. We were going to one small idea to the last point, but I'll share that idea in my next post.

So, I feel bad. Poor teacher who I basically just bombarded with all this information before school started. Here I am trying to explain to her that our son is "basically normal and like any other kid" but at the same time I am shoving all this bizarre information to her obviously showing that he is not just normal. Maybe I did too much, but I just didn't want to leave any rock unturned and I just decided to give out ALL information instead of just some.

She seemed very nice and accommodating. She seemed to have a good attitude, and she even suggested that we don't even bother setting up an appointment with the Principal until maybe October because she knew the principal was busy and she didn't think there would be any problems.

So, with that, the meeting was over, and we waited to see how this new year would turn out for our MJ.

Thursday, September 9, 2010

Facing a New Challenge: Skipping Grades with Aspergers

Well, we heard back from the Principal and the decision was granted---MJ was to be allowed to skip the 5th grade all together and enter 6th grade this coming fall.

Although it made sense academically to skip MJ, it was a bit of a social no-no. Really it isn't that great to skip regular kids into a higher grade at times, let alone skip a child with Asperger's Syndrome, someone who was already a social misfit?! How could we?

It took a long time for us to come up with this possibility. MJ was very very smart. The schools and doctors had tested him and shown us even more than we thought at how smart he was. Yet, here was this kid with poor social and processing skills, and who was awkward, clumsy, had poor handwriting, and slow speech, and he didn't always show his smartness right off. It really wasn't fair to the poor kid that he had all this intelligence inside him but could never get it all out in time to prove it.

Over the years as we figured out his Aspergers, we found ways to work with the school to accommodate him so that he was able to show his talents. With his 504 Plan, teachers gave him less written assignments, more oral, allowed him extra time to write, gave him social cues, and little things here and there to help him adjust. It was working quite well mostly, but he was still way above the other kids academically.

We had hoped he would figure things out socially, yet he was not. And with Aspergers, would he ever really fit in the social circle? We hated to see him so miserable and bored both socially and academically. So, we had to choose at least one to be happy in. With Aspergers, who knows if we can help with the friendships and social acceptance, but at least we could help him enjoy school more and feel challenged. They had tried in 4th grade to allow him to go back and forth between grades, but it had been a big mess. Schedules never quite worked out and MJ was always left an emotional mess. We knew he needed to be challenged, but he also needed stability in a set schedule and one main teacher. We agreed to the skip.

But now the really would this work? The workload was surely to be more advanced, and would a new 6th grade teacher be willing to accommodate a child that not only had skipped a grade, but had the issues of Asperger's on top of it? And plus there was to be a new principal this year. What if she didn't agree with all these accommodations for MJ?

All summer we worried and waited until it was close enough to school starting that we could set up a meeting with MJ's 6th grade teacher.

Thursday, August 12, 2010

Swimming Lessons, Asperger's, and Awkwardness

A kid with Asperger's Syndrome isn't always the most coordinated kid in the world. A lot of the time their movements come out just plain clumsy and awkward. At least this is the experience we have had with our oldest son with AS.

When MJ was younger he was constantly tripping and falling when he ran. He has walked on his toes since I can remember, and it does not help with his coordination much. Yes, we tried physical therapy and casting and constant reminders (which we still do), yet, this boy is set to walk on his toes! So frustrating sometimes!

Anyway, MJ's balance isn't always the best, and his reflexes don't respond as quickly as one would like, and so it kind of put a damper on anything sports related. Maybe that's why he hates sports so much. We tried him in T-Ball, Soccer, and Gymnastics, but he hated them all. He was either too afraid of heights or afraid to jump and climb, or he just couldn't connect with a ball in time to enjoy it.

So what if he doesn't do well in sports we thought. He doesn't have to. Although, one thing we knew he did have to learn was swimming. Yep. Swimming lessons. There was not a choice for this one. While I don't care if I have any Olympic swimmers, I at least want each of my kids to be able to swim well enough for safety purposes.

So, we enrolled MJ in swimming lessons way back when he was around 5 years old.

It did not go well. Well, maybe the 1st year he was OK, just getting used to the water and all, but then when we tried the next few years it was not good.

At 6 and 7 years old, MJ was still in the basic beginner level. At 8 years old they tried to move him up to the next level where he just about drowned and it was so traumatizing for him that he didn't want to take lessons ever again.

At 9 we tried again at a private pool. Still, things were not going too well. OK, I lied, this is when he finally mastered the back float and the back "monkey airplane shoulder" thing. Hey, I suppose he could just float on his back and not drown, but he still couldn't tread water, he couldn't do any kind of front swimming besides doggy paddling. Hmm....

OK, this summer MJ is 10 years old. Now I'm thinking back to when I was 10 and I don't think I could swim any better, but kids now a days are more advanced. At least where we live. Most kids by age 8 already know how to swim and can swim across a pool. (How do they do that?!) I mean people are putting their kids in swimming lessons even before they are out of diapers!

Anyway, back to the point---Micah is 10 years old and needs to learn how to swim, but I've got to put him in "Beginning Level" swimming lessons once again because he cannot tread water and he cannot do any front crawl or swim forward for so many feet (whatever they require).

So, yeah, my poor little 10 year old that has to go be in a class full of 6 and 7 year olds who can swim better than him.......(Thank goodness he is short for his age, and thank goodness for his Asperger's that makes him more unaware of social things to even notice or care that he is older!)

So, how would he do?

I've sat for 2 weeks again watching and hoping while MJ half drowns in the water. Will he ever get it? I know he is trying, but it's like his movements just aren't as flowing as the other kids, and while they are gliding and floating, he is sputtering and sinking. It's been 3 years with him in this same level, and I don't think he is ready to move up.

He came to me a couple of days ago crying that he was just scared and he couldn't do it and he didn't want to continue swimming lessons.

Now, what do I tell the kid? It's not really a choice to learn or not, but what if he just can't get it? I mean, as a swimmer I totally suck. Really. I think I never got it either. I think I got to his level in swimming and never got past it. EVER. Sure, if someone throws me into a pool I can get to the side, but I can't do the freestyle, or backstroke, or dive hardly. I can barely tread water for very long. I suppose he can avoid water his whole life.....but how will that help. He's got enough social problems as it is not needing to add "can't swim" to the list.

I told him to not be scared, that the teachers and life guards are there to help him, and just to try his best. Just try. You can do it. Talk to the teacher, ask for help.

On the last day I finally saw MJ jump in the water and swim the width length of the deep end pool somewhat front crawl swimming to the other side. He didn't stop. He didn't drown, he didn't even doggy paddle. He made it! Hooray! Maybe he was finally getting it!

Well, today was the last day of swimming lessons when they evaluate your child and tell you what level they should do next time. And what did they say?

Yep, still not passed. Poor kid will have to repeat this level yet again next year when he is 11 years old!

But, you know, this is all dumb I think. MJ doesn't care that he is 10 and can't swim while all these other kids can. So what! So what does it matter that a younger kid can swim better. So? He is getting better and things are finally connecting. He just needs practice.

I wish I could have the mind of an Aspie just once. All us "normal" people are always so worried about matching up to everyone else and doing what is considered socially acceptable. Someone with Asperger's doesn't make sense of it or even notice the differences. Sometimes I think we could all be a little better if our minds were wired with a bit of that Asperger wiring.

Well, here's to another many many more years of swimming lessons!

Saturday, July 3, 2010

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 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 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.

Tuesday, June 15, 2010

Special Ed?

So, it was the end of the year for 4th grade and all of the sudden we found out the principal who had been so wonderful and accommodating with MJ was going to be transferred to another school. This had us extremely nervous.

How would we know what the new principal would be like next year? How did we know she would allow MJ's 504 Plan to continue or accept it?

We were very worried, so we decided to set up a meeting with the current Principal and the school psychologist BEFORE school ended to update the 504 Plan, plus maybe talk about how it had not worked very well over the past year because the teachers were not following it consistently.

It took us much calling and emailing to set up the appointment, but when we did we were actually surprised what was suggested.

Now, as you have read in previous posts, MJ had several things listed in his plan which were supposed to help him throughout the day. The problems we were having was mostly that the teachers were forgetting to follow through with these helps.

One of our biggest problems still was how MJ would get home and not have the work he needed to do. Or he would be getting in trouble for not remembering things or finishing assignments. According to the 504 Plan, the teacher was supposed to be helping to cue MJ and to be checking off his day planner at the end of the day to make sure he had all the assignments going home placed in his backpack. This was not happening.

Now, good grief I know the teachers have a lot to deal with already, and I'm not blaming anyone. And really, what good was it doing having the teacher always having to cue MJ or remind him or whatever. Yes, it would help, but was it going to help him in the long run? No. We really needed something so that he could learn on his own and something that could help him in the future so he didn't have to depend on other people.

I've been trying to get MJ to be more independent. I've been teaching him how to cook, do laundry, dishes, and jobs on his own. Why not keep going? So anyway, we thought maybe we could discuss allowing him to use his own personal PDA that would cue him when he needed to be somewhere, do something, or most of all---what work he needed to bring home and get done.

There were some other things we wanted to discuss too. He was meeting once a week with the psychologist to talk and play games with 2 other boys. I'm not sure what the purpose of this was. I think the other boys had some sort of anger management thing and maybe he was assigned this time because of the whole biting incident.

I was disappointed though. I figured maybe this could be a chance for him to learn more social skills as far as being taught or going through social stories to learn more how to appropriately respond and act amongst "normal" people.

At the meeting we touched on the idea of a PDA, and then when I began talking about my hopes toward social teaching, the psychologist suggested a different possibility. She suggested Special Ed.

OK, so I don't have anything against special education classes. If fact I think they are most wonderful for the right students, but I did not think it was the right place for MJ.

MJ had his issues, but he didn't really need a special ed class to get him through school. He was extremely gifted. At the beginning of the year they had done a series of tests and told us that he was extremely intelligent and in the "superior range". Now, not to say that anyone in special ed can't have a high IQ, but I just didn't see what purpose it would be to place him in a special ed class.

Just because he needed some social teaching and guidance, he isn't allowed that unless he is put in Special Ed?

I guess I didn't understand. Really we were meeting for yet another reason, which we will explain in our next post.

Sunday, May 30, 2010

Forgetting to Follow the 504 Plan

The new school had a copy of the 504 Accommodation Plan set up for MJ, and we had met with the school Principal, psychologist, and his teacher, so we figured all would be well. However, we soon began to see holes developing in this plan and things were not working out as hoped.

Not that the teachers were doing anything wrong. They were just often forgetting the things about MJ, and how certain things should be handled. I know it is difficult to be a teacher enough as it is with having close to 30 students in a classroom. It is hard to remember everything with that many students, but I thought that was the point of having a 504 Accommodation Plan so that it was something in hard copy that could be looked at to help remind them.

MJ had a wonderful teacher, and we were lucky to have her. She had previous experience with other students with Asperger's, and so we knew she would work well with him. The problem we were having is that MJ was coming home again without assignments, or he was not even doing some assignments because she was not being literal enough. He was having meltdowns in class because he wasn't being told to go to other classes on time. He wasn't communicating with the teacher and so was missing out on various things. He wasn't finishing tests because he wasn't being given enough time to write.

Now, as a refresher, I'll explain some of MJ's difficulties;

With MJ's Asperger's, it affects the way he is able to process information. While he is super smart, he is unable to process the information quickly enough to put it out in words or on paper. This has caused him to fall behind in timed tests or not be able to finish things at the same speed as other students. His motor skills are not very smooth and so he appears awkward and clumsy. His handwriting is very forced, slow and sloppy. He doesn't see spacial relations very well and so any information on paper that he writes appears jumbled and smooshed together. He doesn't understand personal space and so often gets too close to others. He doesn't understand a lot of social cues or rules. He only understands direct, literal communication and instructions. He becomes too focused on most tasks and so cannot remember smaller tasks. He must be constantly cued to remember when or what needs to be done or what to bring home.

So, because of all of these things, his Accommodation Plan was set up to help him to succeed despite these challenges. MJ was super intelligent, but in order for him to live up to his full potential and succeed in school, he needed these few directions:

His Plan listed 6 accommodations:

1-To be allowed extra time to complete written work, or cut written work in half, or perform assignments/tests orally if needed.

2-To be cued when invading others' personal space.

3-With the teacher's help to go through his planner at the end of the day and make sure all needed materials for homework are getting in his backpack to go home.

4-Seating closest to the teacher and importance of teacher in using only direct and literal instructions.

5-Allowing him to use graph paper to help better organize work on the written page, especially in math.

6-Having the teacher cue him when talking inappropriately loud or soft, or too fast.

So, anyway, yes, it was a lot to take in, but not that difficult to accommodate. Well, at least I didn't think it was a big deal. Then again, we've been doing this for years.

MJ was coming home from school and he didn't have homework again. He brought home a midterm with all A's, yet a C in English because he wasn't finishing written essay questions on tests in time. He wasn't completing tests or doing certain assignments in school because he was not being told he "had to do them", but only being asked, "why are you not doing this?"

Nothing huge. I just had to email the teacher several times, and at one parent teacher conference I had to remind her that he can't ask a kid with Asperger's why they haven't done something to mean that they are supposed to do it. They will not understand. I was surprised when meeting MJ's math teacher (They had recently placed him with a higher grade math teacher.) that she had not even been told about his Asperger's or shared his 504 plan.

I guess it was just a little frustrating to have to keep reminding them of what was supposed to be taking place. Yes, they were always very very nice and accommodating, so I guess I should be very grateful, but I just thought the whole purpose of this 504 Plan was so things could go a bit smoother. This was life I guess. Always a challenge. I'm sure it will continue to be a challenge. We just keep taking each day a step at a time.

Tuesday, April 13, 2010


4th grade seemed to be going well with MJ. I had met with the teacher the first week and shown her his previous 504 accommodation plan from the previous school. She informed me that she had a student with Asperger's before, so she was somewhat familiar with it.

I was a little concerned that the principal didn't seem to think it was necessary to update the 504 plan or have the new school team sign it, but he assured me that they would follow it just the same. So I let it be.

Things seemed pretty good. I didn't hear of any problems. Then it came time for parent teacher conferences.

As I was finishing up with my younger son's 2nd grade teacher, I noticed the principal waiting for me. He seemed to want to go with me to meet with MJ's teacher. Gee, I thought that was pretty nice that he seemed all concerned MJ was fitting in, but yet did I know what was really going on.....

We had met earlier in the week with the principal, teacher, and school psychologist setting up a plan for MJ which I will get into more at a later post, so I did think maybe the principal was just coming with me to PT conferences to show his involvement and support. We also had the school psychologist join us, so I thought we were pretty popular, but really I soon found out that there had been an "incident".

The teacher went over MJ's grades and progress and all that, but then she asked him if he had told me what happened yesterday. I can't explain the expression MJ was making, and he was silent, so I was a little confused as to what happened. I was hoping it was a good thing? Apparently it was not.

Yesterday, as the psychologist explained, things got "escalated". Escalated? What exactly did that mean anyhow? She said MJ was playing with another boy and then she used that word again, and I'm thinking huh? But then she says MJ bit the other boy. Bit him on the upper shoulder?

I'm sitting there in disbelief because MJ has never ever ever bit another kid. Never. Not even his brother at home. How could this be? And, how does a kid bite another kid on the upper arm/shoulder area? What would possess someone to do that?

MJ was very upset. He wasn't saying a word, but tears were streaming down his face. I was super upset---not exactly upset only at MJ's actions, but at the whole embarrassing and horrifying situation in itself. Here I was in front of the teacher, the principal, and the school psychologist, and they are probably waiting for me to do some disciplinary action of some sort, but it is all shoved on me at once.

I am trying to tell them that this has NEVER happened ever and at the same time I am asking MJ why he would do this and telling him that this is totally unacceptable, and I'm thinking biting is a pretty big terrible thing, and wondering what comes next, suspension?

Then I am surprised at what happens next. The teacher and school psychologist begin showing me MJ's marks in citizenship and behavior. On his report MJ has all H's meaning honors, but then he has one S (for satisfactory) but with a circle around it and a star they have drawn next to it. They tell me he has done well, but as far as behavior is concerned he only has an S, but it is because they understand he has Asperger's and that it is OK. In a sense they were telling me that it was OK for MJ to misbehave and that it was OK because Asperger's was his excuse.

OK, now, I agree there are some issues sometimes with MJ and his Asperger's, but I do not accept it an excuse to bad behavior. I have taught and raised this kid to behave well and to make good decisions, and I do not allow him to get away with misbehaving, excusing it to Asperger's. I mean, yes, a lot of the time there have been incidents where he has gotten in trouble at home or at school because of things related to him having Asperger's like a misunderstanding, or not getting the social rules or the problems with change or transitions, or whatever, but it has never been outright fighting, hitting, or biting. I did not accept this excuse, while the school seemed to excuse it off.

I asked them what should I do, if I should contact the other child's mom to apologize, or what proper procedures did we need to take care of, and they told me it was all fine. I could sense that possibly they were telling the other kid's mom "sorry, but the child which bit your son has autism, and it's being handled."

OK, so I don't really know all that was said and what they told the other parent, but I just had so many emotions going on right then that it was overwhelming. No, I don't approve in MJ's behavior at all, and I sure lectured him for a very long time as well as his dad that we are to NEVER EVER EVER EVER bite anyone EVER (unless it is strictly absolutely necessary in self defense or something), and then I made him write an apology letter to the other boy.

I guess I'm somewhat surprised mostly that this would happen, but as I started to notice later, MJ did seem to bottle up his emotions a little too much, and then he would get upset and just act without thinking. I saw this with his brother sometimes. Or, I guess I've seen it more as emotional meltdowns where he is crying about change or something that didn't go as planned, but I had just never seen the anger part.

Still, I don't want Asperger's to become this sort of excuse for him. I don't want the school to be excusing any bad behaviors or actions because of it. It is not an excuse. It may be difficult at times, but there is no reason why MJ can't choose to act more appropriately and follow the rules just like any other kid. I hope that there are not exceptions being made to things at school for MJ. Yes, I am all for accommodations, but not exceptions to the rules---if this all makes sense?

I guess I am glad that MJ did not get into more serious trouble at school, because he really is a good kid, but at the same time, I am troubled by the lack of discipline. I mean, really, if some kid bit my kid, I would be pretty upset and hope that the other kid was getting in some kind of trouble be it missed recess or whatever.

Of course, there goes the other fear that I gained this day---now, who was going to be MJ's friend? Or rather, who's mom is going to let their child be friends with the kid who bites? Yikes. How would things become now?

Thursday, March 25, 2010

Finally Friends?

MJ might seem content always reading his thousand page books or whatnot, but I know he needed some friends. School had been hard the last many years with him coming home looking so sad and defeated, telling me that he just wandered around on the playground all recess but no one would play with him.

Now, I know part of this problem stems right from his Asperger's in that he doesn't want to do what the other kids are doing. He's always telling me that they were playing kickball or this or that, and he doesn't want to do those things. I've tried to explain to him that you can't always do what you want to do, and sometimes you have to join in the other kids with their games, but it does no use. He is pretty set in his decisions of what he likes and dislikes, and he does not want to change.

Anyway, as we switched to the new school we had high hopes that this change might do MJ good. It would give him a fresh new start with now 100's of kids to find friends from. So, did it work?

The first day of school the kids came home. "So, did you make any new friends?" I asked.

"Yeah, I have 2 friends and we play at recess together." MJ tells me. "They like Pokemon and we talked about Pokemon cards and battles."

Oh, the joy that brought to my ears. Yes, I know it sounds sad, but it's taken 4 years to hear that my son has friends. I was surprised though, and a little hesitant to accept it as reality just yet, so I waited and asked him every day that first week of school. Still by the end of the week he was listing the same 2-3 boys names and it seemed like a real deal!

How could it be so easy now? It astonished me that it seemed so natural and easy. What had been the problem before? Or were these really friends or just a new group of kids that he had nominated to follow around? I worried a little being that he used to list all these "friends" at the previous school, but yet I knew they were just humoring him for several years not really including him in their true friends circle. Hopefully this time was different and this would be a new start for MJ. He was a good kid and although he might be a little eccentric, I think he could still be a good friend.