Showing posts with label processing delay. Show all posts
Showing posts with label processing delay. Show all posts

Monday, March 12, 2012

Is Asperger's Hereditary? Another Son with Asperger's?


This blog has always had the little bit at the top that says, "Our experiences with 2 Aspies, maybe 3....", as our son MJ has Asperger's, my husband, and then we have always suspected our youngest daughter Rose to have it also.  Well, today, we might be adding another number to that tally.  We think our second son, Thomas, probably has Asperger's as well.

I suppose this is not just an all of the sudden realization that Thomas could have Asperger's.  All the signs have been there, yet we have chose to ignore them.  In some ways, his symptoms have been so extreme that they are almost shouting at us----"Hello!!!!  This is Asperger's!!!"  But why haven't we paid attention?

Back when our oldest son, MJ, was being diagnosed, the team of doctors mentioned to us that we should keep our eye on his younger brother, as he seemed to show some similarities, but I thought they were talking more about how he was really smart and reading at a young age like his older brother did.  

Thomas is our second son who is now 9 years old.  He's had his little eccentricities, but not in the same way as his older brother.  While he is very literal like his brother, I thought it was just from copying what his brother said.  He seems to have a lot of opposition when it comes to changing events or when something doesn't go the  way he planned, but I have always taken his whining and complaining as just that---stubbornness.  

Then there is the huge sensory issue.  Thomas cannot handle extreme sounds like high pitched noises, children screaming, a lot of commotion in a room, or he has always held his ears in pain whenever I vacuum.  As far as textures go, he freaks out by the feel of half of his clothes always complaining that they are not soft enough or scratchy.  No matter how hard I try to find the softest textures of PJ's, at night I always find him practically naked under the one and only fleece blanket that he will accept as he won't let any other blanket touch him.  He sleeps on top of his bedspread. 

As far as social things go, I've never really noticed that Thomas has problems talking to other kids or if he misunderstands social cues.  But then again, he is 9 years old and has never had a play date.  While he believes that "everyone" is his friend, I have never had another kid come over and ask to play or a parent ask to set up a play date.   He isn't invited to birthday parties.  Hmmm....

He has an extreme problem of not being able to look people in the eye.  I think it drives his piano teacher insane that he will never look at her when she is talking to him.  Actually he is usually looking anywhere but at the person talking to him.  He'll play the piano while intensely focusing on an object across the room.  How he does that and still plays so well is amazing to me at times, but it also seems not so good when at piano lessons as it seems he is not paying attention.  Well, that and how he seems to have this a little too long delay in his responses or you have to direct him to answer the teacher when she asks him a question or says "hi, how are you?" 

OK, so hello again!!!!  Look at all these things.....aren't they all just screaming "Asperger's!!!!"??? 
Well, no, we still just shrug it off.  
Actually, we were more concerned with a different problem affecting Thomas.  A few years ago we started to notice all these noises and facial tics with Thomas.  It began with sniffing, then gulping, swallowing, making clicky throat noises, then scrunching up his face and nose, making fish faces and blinking his eyes.  This seemed more out of whack for us ( I suppose we were used to all the other Asperger like traits) so we began taking him to doctors to figure things out.  There, it came to be that Thomas had Tourette Syndrome.  Tourette's is a condition where people tic and they can't control it.  Well, they may be able to suppress it, but it usually ends up exploding out after a while.  Now, many think it is the "swearing" disorder, but that is actually a form of Tourette's that is not always involved.  

So there----Thomas just has Tourette's.  Or so we thought.....

As we took him to different doctors, the thoughts of ADHD or hyperactivity disorders came around.  Well, yes, Thomas was the most hyper of all my children, and I swear I could not get him to focus on anything for longer than a minute!  It drove me absolutely insane!!!  He was always distracted by anything and everything!  While they evaluated him for that, they didn't seem to think he could be able to play the piano as well as he could if he had ADD or ADHD.  That, and our evaluations didn't match up with one overprotective teacher who scored him at all zero's.  We did learn that with Tourette's there is a lot of hyperactivity, so we just left it at that.

OK, back to the point of this post---the possibility of Asperger's.  Is it hereditary?  I believe it is, along with many other doctors.  But how much is hereditary and how much is just learned behavior?  I mean, younger brother has older brother and dad to look up to and they both have Asperger's.  How do I know what is him and what is just copied?  

Well, if all these characteristics weren't enough, a big one we have never connected is Thomas's massive obsessions.  I just thought he was an interesting kid who only wanted to play the piano for hours as a 4 year old.  Or, sure, my kid has obsessed about maps and atlases since he was 3 years old and spends hours just looking at maps, following roads, or making up games with atlases.  Sure, he likes to take the phone book into the car with us so he can go through every street and every map.  So.  Or, little teeny notebooks and papers.  He has to have every single thing or book that is mini.  It doesn't matter if it is some mini sized book about dirt.  It's mini, it's called "pocket" whatever, and he has to have it.  

I recently looked up an article that listed the characteristics of Asperger's in kids at http://autism.lovetoknow.com/Aspergers_Checklist, and although he doesn't seem to show the social clueless signs of Asperger's (well, maybe, I suppose he does think everyone is his best friend, but then nobody plays with him), all the other signs are there staring at me in the face.  That, and I was interested to see one of the symptoms they listed was "may have facial tics".  Hmmm...  

So now what?  Where do we go from here?  Do I need to have him evaluated?  Will doctors think I am crazy?  Do we just leave it be?  Well, this can be dilemma for another post.  But until then, I think I just might change my little description up there to "maybe 3.....maybe 4....."

Monday, October 17, 2011

Preschool Evaluation for Asperger's?


As we have talked about before, our little Rose was having some problems.  She was 3 1/2 years old now and while she had always been a little more solemn, shy, and reserved, now she was having huge issues with separation anxiety as well as any forms of socialization.  

From the beginning, my husband with Asperger's has said "she's got it".  Like it's some 6th sense or something that he just knows she's an Aspie as well.  I don't know if I believe that is possible, but it is true that we see many similar traits and behaviors similar to that in our oldest son with Asperger's.  

It is interesting that before 3 1/2, she talked, she played, although never to others she didn't know.  She talked and played with us.  The only time others would hear her talk was when she would sing song to herself somewhere.  Rose tends to just ramble on and on to herself at play, but it isn't talking, it's singing.  She's always been singing what she wants to say.  Everything is a song.  At least she was talking even if it was in song.

Yes, she didn't really ever respond to others.  She wouldn't look at other people or hardly ever smile, but she knew how.  When she did show emotion it was very copied.  She would smile if we smiled or show a surprised face if we did or looked mad if we did.  We weren't too worried, we just continued to observe.

However, when summer came and all of the sudden she shut down, we began to worry.  For 3 months she would not go to anyone else.  While she used to go to a church class, now she was terrified of the people and environments that she had always known.  She screamed in terror, she cried at any little thing that frustrated  her.  She stopped talking.  She wouldn't go to family members.  Something wasn't right.  

We tried many things but finally decided to see if she needed some sort of an early intervention program.  We agreed to having her evaluated through the school district at a local preschool program.  They were to evaluate her in 2 ways; 1st in communication (which I don't think she had a problem with speech or vocabulary---she could talk, she just wouldn't talk or initiate her own thoughts and words), and 2nd in socialization skills (This is where I thought she had most issues as she would only play with kids over a year younger than her if any at all.)

The preschool wanted to evaluate her over a 30 day period.  So we took her to preschool 2 days a week for a little over a month.  Right away we were amazed as she began opening up to us again.  She was talking again and finally after a summer long of not going to church class, she could go on her own again.  She began  feeling more comfortable around neighbors she knew and grandparents without the screaming fits.  It was wonderful, however, we still noticed the same issues in socialization.  

When we would pick her up from school she was always playing alone lining up all the play food in the kitchen.  All that time I never once saw her interact with another child or playing with another child.  While when she first began preschool the teachers would ask her something like, "what would you like to do?" and she would respond only with "yes", now she was actually talking to her teachers.  

By the time evaluation time came to a close, I know that the teachers and staff probably thought we were crazy because she seemed perfectly normal to them.  I felt stupid, yet we still knew there was something different about her.  

The team sat down with us and went over there findings.  First the speech therapist told us that her vocabulary was very high and had no communication problems with speech.  We again stated that we knew she didn't have speech and language problems, it wasn't that she couldn't talk, but that she wouldn't talk.

Then, when they explained her socialization, they said they didn't see any problems because she played and took part in the different activities.  I asked about how I only saw her playing alone, and they said that was normal because she always played with the play food in the kitchen everyday and there were mostly boys in the class who wouldn't be interested in playing over there.  My husband told me, "Don't you think that is not normal for a child to play with the exact same thing every day the same way and never with another child?"  But the school didn't seem to think so.  

They didn't mark the box for greeting, saying hello, or saying goodbye.  I tried to point this out to them that it made sense to me because with Asperger's my husband and my son don't do that, unless we specifically instruct them to.  They responded and said, "No, she would say goodbye if we asked her to.  So, she can do that."  And then they checked off the box.  So funny to us, because we are both thinking, this is the point.  It's not that she can't talk, or do things with others, or say hello, or goodbye, or smile, or look at you, it's just that she doesn't do them on her own.  She has to be instructed.  That is what is different.  But they didn't see it that way.

One last thing, they commented on how "thoughtful" she was because they would ask her a question and they said she would take a while before she answered because to them she was "going over all the possibilities in her head and making sure she said the right answers."  My husband laughed at this talking to me later because he recognized that right away as the processing delay that comes with him and our son with Asperger's.  I suppose it is sort of being "thoughtful" but not in the same meaning as these teachers defined.

So, in the end, they said she did not qualify for anything.  Not that we thought she needed all sorts of special help or anything, but it's just so interesting that their ways of evaluating kids seem to miss all the signs of Asperger's Syndrome.  I figure that is why a child can go undiagnosed for so long.  This same preschool had evaluated our oldest son at age 4 and told us there was nothing wrong with him because he was so smart and his vocabulary was sky high.  

I don't think people understand what Asperger's is.  It seems they are more concerned with not being able to talk or communicate by words and vocabulary more than the problem of not knowing how to communicate. Everything must be instructed.  Sure, Rose will talk and respond more when prompted, but it is always through promptings.  She will go by another child if instructed, she'll hand a toy to another if asked, she'll copy what a teacher is doing, but she doesn't have that social interaction that a typical almost 4 year old would have.  

I am grateful to the preschool and we plan to have her continue in their program so that hopefully she can gain more experience with a group interaction, but I honestly don't see it changing all these traits of Asperger's.  Who knows.  She may or may not have it.  It doesn't change how we feel about her.  It wouldn't change how we act with her.  We know what works, and when we have to give her extra help, or how to quickly calm her down before she has these little meltdowns over the smallest of frustrations.  It kind of just makes my husband and I laugh and wonder how it is that any young kid is ever diagnosed with high functioning autism.  We'll continue to watch her grow and develop.  But my husband believes that someday there will be an "I told you so".

Saturday, April 30, 2011

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tuesday, January 18, 2011

5 Hours of Homework!? Searching for a Better Plan for Help with Aspergers

Things had been working out pretty well for MJ. His 504 Plan seemed to be working and he had a PDA that he remembered most of the time, and mostly he was excelling in school. On occasion there would be a few missed things that he forgot to finish or take to school because he hadn't programmed them into his PDA, but over all it seemed like he was getting all his work taken care of and he was getting good grades.

MJ has actually become a pretty responsible kid. I believe a lot of it has to do with routine and expectations. He has a set of "jobs" that he is responsible for everyday before he is allowed to play on the computer. His "jobs" consist of:

1-clean room
2-do homework
3-unload the dishwasher
4-practice guitar

Nothing too major I believe. He is very good about getting them all done each day and then having time to spare. However, on a recent Monday everything was different.

Usually it takes him a half hour to do his homework which is normally just some spelling practice and occasionally a math worksheet he didn't finish in school. But on this particular day, for some reason he had a lot more homework than usual.

I set him off to do his homework, and a couple hours later I was surprised that he was still working on it. Had he been playing around? Distracted? Reading?
No.
He was actually working straight for 2 hours. So I asked him what he was doing, and he began telling me all the things he had for homework that night. He said not only did he have his regular spelling work, but he also had to do math homework out of his book, and then he had to finish 5 different reading/language segments out of his book which involved 5 different pages of essay questions, and then he had to finish some packet and also write what he called a "myth story".

Woh. How could he have so much work all of the sudden?

Now, knowing MJ, I figure he must have not finished these assignments in class because it is often that he doesn't finish, but usually he brings things home on and off and gets them done throughout the school year. Usually it is just a page or two in different subjects, but nothing like this. Something must be up, but what?

MJ tells me it is the end of the quarter this week and he has to finish all of his assignments by tomorrow. Still, this seemed like quite a lot, and as he continued doing his homework for the next 3 hours, I felt terrible as he struggled to finish while tears rolled down his face.

MJ has a very good teacher and she is very considerate and helpful and works with him very well, so I decided to send her an email about my concerns. She quickly emailed me back and gave me a call.

What came out was that they had this sort of deal. She was very accommodating and followed his 504 Plan well. She allowed him extra time to finish his assignments whether that mean in class, or to be taken home to finish later. While most kids turned in their work that day, she would tell MJ that he could finish it later and just turn it in whenever he was done.

That was the problem. A non-literal, direct bit of communication that doesn't seem like much, but to MJ it meant he didn't need to finish that work that same day, just whenever and then turn it in when he was done.

Now sooo sad that my kids are such procrastinators (well at least he did get around to it finally), but MJ would have never thought to bring home his assignments each night to finish because she had told him it didn't matter when just as long as he turned it in as he finished before the quarter ended. Poor MJ can't process this too well and unless a person tells him he needs to do this "NOW" or a more specific time frame, then he will more than likely not do it until it is actually due.

His teacher felt really bad that he had been doing nothing but homework for 5 hours, and I felt bad too, but he did need to get it done (although his teacher said he still had until the end of the week), but something was not working here.

Dang that PDA---MJ had run out the battery and it had erased all his programs and so he hadn't been using it for the last many weeks. Was this the problem too?

There is so much that can be overcome with Asperger's with technology, but what happens when technology dies, or runs out of batteries? MJ does so well with routines in fulfilling his responsibilities, but we need to possibly incorporate future and daily planning into his routine as well. He can't always assume there is going to be a deadline for all his work in life, and if there is not, is he going to be able to do his work without his boss or teacher saying "you must do this NOW" to direct him? I do not know. It is frustrating how literal an Aspie must be, and I wonder if he will grow and mature to figure things out more in life.

I look at my husband and see so many times still that he does not get things or understand what people have meant to say. His work is all deadlines, thank goodness, he uses his phone as a constant beeper/alarm to remind him when he needs to do things, but it is still not full proof. It is often he gets behind or misses programming something in there. Maybe it will be a struggle for MJ as the years go on. We need to figure out a better plan.

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 worry.....how 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 specialists....in the end it came down to Asperger's. I had never even heard of Asperger's before then.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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, December 29, 2009

Changing Schools for the Better?

The beginning of MJ's 4th grade year and his brother's 2nd grade year, we made a drastic decision to switch schools. We had struggled for the past 3 years at another school trying to figure out things with MJ, and finally we had gotten them to set up a 504 Accommodation Plan for Asperger's. This was the last month before school ended for summer break and so we were looking ahead feeling pretty confident things were finally going to be OK.
But then we made a last minute decision and things all changed.

MJ and Thomas were both in a full time gifted program located at another school within the city but further away than their home school. While it had been great for Thomas so far, MJ had struggled for the last 3 years trying to find his place as a gifted student with Asperger's. It had not gone easy. It took us a year to find the diagnosis, but then another 2 years to get the school to accept it and willing to make any accommodations.

MJ was so smart, yet he had certain setbacks such as processing delay, sensory issues, problems with speech and stuttering, misunderstanding of nonliteral communication, bad organization, forgetfulness, and invasion of others personal space. Not to mention his awkwardness, strange gait, and the need to be constantly cued. But yet, because he was so incredibly smart, these things often could be hidden, until 3rd grade where problems were arising.

Long ago I had gone to the school and asked them how they could accommodate MJ. According to the doctors and testing, they told us MJ was in the genius range as far as knowledge, IQ, and academics, yet because of his Asperger's his processing was way below average and so it was as if MJ was this super smart kid who couldn't get his ideas out or communicate them fast enough to show others. That didn't seem fair to me, so I asked the school district what could be done to balance this out so he could show his full potential. They told me, "it doesn't matter what diagnosis he has, as long as he is not failing academically, then we will not make any kind of accommodations." I remember being very very frustrated. What an injustice to a gifted child.

Anyway, we fought long and hard trying to figure out how a child with Asperger's fits into a gifted program. Finally at the end of 3rd grade we were getting some results and a 504 Plan was set up. It may have made 4th grade to be a great year for him academically, but another problem was on our mind---his need for socialization.

MJ had struggled with this for years. Although he did have some friends, most of them were in the grade level above his, and many of them were not close friends. He would go tag along with some of the other kids at recess or try to involve himself with the other kids, but none of them were really close friends, and I think they just humored him or let him play along to be nice at times. The problem with the gifted program is that he was stuck with the same 12 kids for all 6 years of Elementary School. This is great if you've got good friends, but if you can't find your place, then it leaves you stuck and alone. MJ often came home very sad and depressed being that he had no friends to play with at school.

Maybe it was part of having Asperger's that he had trouble making friends or knowing how to act socially, but maybe he could do better if there were more possibilities of friends in greater numbers. So although we knew MJ needed the challenge of a gifted program, we made our decision to change him back to our home school hoping for a new chance to make friends. We had our fingers crossed and hoped for the best. The home school had the largest 4th grade class of 4 classrooms with over 100 4th graders. Going from 12 4th graders to 100 is a big difference. Could he find friends here?

We met with the Principal the Friday before school started and introduced our boys. I alerted him of MJ's Asperger's and his established 504 Accommodation Plan. We discussed what accommodations needed to be met, yet also his giftedness and my concerns for how he needed to be challenged. The Principal seemed great and addressed my concerns. He said he would take all things into consideration to find the best match for a teacher for MJ.

And so we sent our boys off on the 1st day of school and hoped for the best. Would he make a friend? Would the teacher be OK? Would this school make a difference?

Wednesday, August 19, 2009

Asperger's in the Office

Here we are. See my cute husband? It's been an interesting road with him and Asperger's. Many days I'm grateful to it for allowing me to have a better understanding of him and my son. Many days also I am frustrated and annoyed by it.

I don't use it as an excuse and I don't think he does either, but there does come with it many challenges. One in particular we have come across recently is with him and his job.

He has a good job. He does computer stuff. He is a GIS analyst/web developer for an engineer firm. He's pretty smart. He does a good job. He is lucky and unlucky at the same time. His job requires a lot of deadlines which can be stressful, but for an Aspie who can get distracted or want to do something too perfect, it allows him to manage his time by force almost and get things accomplished on task.

We are grateful for his job and that he has been able to get out there and have a working relationship with others despite his social awkwardness at times.

Recently we have found it has it's setbacks.

These past few months he has had a chance to where he could possibly move into his own office at his job. Nothing big and fancy, but it would be a step up and I think he deserves it. Now, he hasn't been with the company too long, but they did make him a team leader and some of the other team leaders have their own office. I think it would be great for him to have his own office to help fend off all those distractions that he gets all day. He could shut the door and get more work done. It would be great!

So we all kept our hopes up and waited for the big bosses to make the decision. His direct boss thought he should have it, but it had to go through the main boss. In the end this is what happened:

His direct boss called him into his office and told him the bad news. He would not be getting an office yet because he just didn't seem like management yet. He didn't portray himself well enough and look like a leader. He didn't look people in the eye enough. He didn't talk enough in meetings or sound sure enough of himself. He wasn't outgoing enough or hadn't spoken up enough to the other leaders so that he could look like he was in a leadership position. He was doing a good job, and he was great and people liked him, but because of all these reasons explained, an office was yet for him.

When he told me all this it seemed like someone saying, "Nope, you don't get an office because basically you have Asperger's!"

I mean, really, everything that was being described about him was that which directly related to him having Asperger's! Now, of course he has never been officially diagnosed, although a group of doctors gave him an unofficial diagnosis themselves off the record, and he has never brought the subject up at work as to not be treated weirdly. But now, being that it has directly affected him at work, we wonder should he bring it up? And if so, should he really go out there and get an official diagnosis?

I don't know if I'm all for the go out and get a doctor to put in writing that he has Asperger's. What would the point be? He doesn't need to be medicated and he doesn't need counseling or what not. We don't have the time and money to be going out to doctors for something we already know is probably the truth.

And, what good would telling his work? I know he is happy to know he is an Aspie at times because it helps explain things in his own life and helps him realize there isn't something wrong with him but just he thinks and processes things differently.

So, for now, we laugh and he goes to work and "acts like he is important". Now don't get me wrong. He is important, and he is a leader, and he is smart, but he must physically and mentally force himself to act more outgoing. It doesn't come natural to him, and he doesn't feel it is something he even understands sometime, but he goes and tries his hardest. Look at those people a little more in the eye. Speak up more. Process more quickly and talk faster even though mentally I know that is frustrating because he hates to open his mouth until he has everything formulated perfectly in his head how he will speak it. Use more confidence in your voice. Look like a leader!

We will see what happens, but for now, I guess life isn't always fair for an Aspie, or at least maybe he can learn to be more like the norm of the world even though it might not be natural. Around our house we tell each other, "just fake it!"




Thursday, July 23, 2009

Completing the 504 Plan


So, we met with the Social Worker, the Principal, and MJ's teacher on a Friday to write up a list of goals on the 504 plan. If you aren't familiar with what this is, it is basically a binding contract between the student, parents, and teachers as to what goals are to be met and how each person is going to contribute to making these goals happen. On one side is the goal, and on the other side is what each member of the team will do to aide in this goal.

As we sat together, it was interesting as I realized me as the parent probably knew the most about what was to take place and what should be established. I was impressed that the social worker and the principal had been researching into Asperger's and they had several articles they had pulled up on the internet, and the Principal referred to a book about Asperger's. So it was good to know they were actually interested and wanted to to their best.

Anyway, here is what was established:

They set up 3 main goals.

1-Organization (to help him get more organized, i.e. having teacher sign planner and review that he has actually gotten his stuff in his backpack to go home for homework)

2-Maintaining Personal Space (help him when cued to back up or give people more space)

3-Placement of Written Work on Page (using graph paper, limit written work, more oral type assignments)

So this was it for them, and being a good advocate for my child, I did not sign it, but told them I would take it home to review.

During the meeting the teacher kept saying there was a lot of things that she already incorporated with MJ in the classroom, but I felt that it would be best to have a legally binding document to keep her doing these things, so after a bit of extra researching and studying up on 504 Plans for Asperger's, I added 3 more goals and brought it back to the school. I added:

1-Executive Functioning (saying the teacher must monitor in class work, use direct and literal instructions, and give preferential seating close to the teacher)

2-Speed in Completing Assignments (allowing extra time for any tests or timed tests as needed)

3-Communication (cueing MJ to slow down or talk louder or softer depending on the given situation)

So, in the end, we had 6 goals for MJ and we all signed it and I was pretty happy with it being that they accepted everything I requested.

I was excited to see how this would make things more smoother for MJ and us. Hopefully now he wouldn't be coming home everyday with homework assignments, but not the homework. And hopefully he wouldn't be failing assingments because of these timed tests that were too fast for his processing delay. Hopefully he would be understanding more instructions that were literally directed to him and he was going to have a happier year.

Of course the only problem was that this was the middle of May, and school was basically over for the year, so we would only hope that starting out next fall that things would go smoothly. MJ was going to have the same teacher next fall for 4th grade (he's in a full time gifted program that joins every 2 grades together), and hopefully this year would be better.

Monday, April 27, 2009

Gifted with Asperger's


Often people have asked us why we don't have MJ in a special school or a separate class. (Of course then there are still a lot of people that don't see anything different with him.) I've gotten some comments even on this blog about how he should be put in a special class where he can have more individualized help.

So----why isn't he?

First off, if you've read our past posts and beginnings, you can know that MJ was originally placed in a full time gifted program. This was something he was placed in because he scored 99% on the tests and ranked within the top 14 kids in the school district.

As we were directed to doctors and counselors to seek out what was wrong, they did a massive amount of testing. At first what came back was how incredibly smart MJ was. The school's special ed teacher explained how he could not even show us the results of some of the tests because MJ scored so high above them that there wasn't even a place on the graph to list him. When we had him tested at the children's hospital for special heath care needs, they told us his IQ was in the "genius" range.

We always knew MJ was pretty smart, but from what these people were telling us, he was super smart. So we know already that he did not fit into a regular classroom. We allowed him to be in this gifted program to fit to his academic needs.

Now, when the school came to us and explained that something was wrong and we needed to get help or figure it out, we were in the gifted program already. He wasn't having problems academically, but the problems were because of shakiness, awkwardness, communication, handwriting, etc.

We are still in the program and MJ has little if any problems with academics. He scores above 99% of the nation through different tests. He reads 200 words per minute. He is very very smart, and so when people comment that he should be removed from the gifted program because he is not up to par, well, it upsets me a little.

I know Asperger's is a little different. It is still a disability. (Now I don't mean this in any way negative because I feel it isn't so much a disability but a different perception on life and thinking and Aspie's are in sort of a culture of themselves.) They allow kids in wheelchairs or deaf or blind to be in a gifted classroom with some sort of accommodations, so I say, what is the big deal to allow a child with Asperger's some sort of accommodations?

He deserves to be in the gifted program just as much as any of his other classmates. So, he has some issues with organization, with speech, with awkwardness, with interpreting non literal things, and then he has a bit of a processing delay, but why should any of these things force him to be put in a special ed classroom?

MJ doesn't seem to fit anywhere. He doesn't qualify for special ed because he is so far advanced that they won't put him there. I don't think it would be a right place for him anyway. We don't want to put him in a regular class because he would be bored. But then in a gifted class he is still having problems not because he isn't smart enough, but because of the speed in which they demand.

The timed tests, the pressure for neat handwriting and fast writing, and the importance of organization are killing MJ. It is not that he can't do any of these things. He just has a bit of a delay in processing, and then he has some fine motor coordination problems that make his handwriting to be extremely unreadable and slow. He can be organized, but he can't remember things very well without being constantly cued.

So---what do we do about it? It is the constant struggle even to know what to do that is frustrating. We turned to the school district right after his diagnosis to see what to do. They told us they didn't care what kind of diagnosis we had, but they would not accommodate any child unless they were failing academically.

So here we were. We had a super smart kid who could do OK in the classroom because even though he was slow, or weird, or had communication issues, or couldn't write very well, he would still be able to score high on tests. But what about letting him live up to his true potential? The specialists told us he scored so super high on all the cognitive and thinking and academic testing, but that his processing level was way below even average. So then what do we do?

The older he gets, the more pressure is put upon him to be faster, quicker, neater, remember things for yourself, understand, etc....

This is why we have been trying to figure things out pertaining to his Asperger's. We do not know what is right or wrong or quite where he fits in. We do not judge any of the teachers or think they are wrong. We just look for an answer and hope there can be a way made for MJ to get the best education he can without so much anguish. So please don't judge us for bad choices or comments we make with this blog. Maybe years from now we'll look back and say it was bad, or it was good, but this is just a journal and a learning experience to us all. Maybe somewhere we could have helped someone else who was struggling with the same issues.

We also maintain a blog relating to being a parent of a gifted child that you can read at www.parentingthegiftedchild.blogspot.com if you are interested in any of those adventures.