I am happy to say we have reached what appears to be an amicable solution to our dilemma! (We were not hopeful) I am told that where we live, successful outcomes are an anomaly. Due to the confidentiality agreement, I can not go into details. All I can say is that everything we wanted was addressed successfully...except for a certain person who wants to charge me 35 cents per page of my son's records. It seems a bit high to us, but that is a small skirmish compared to everything else we have been working on.
That is not to say that this has not been a battle. I've had doubts that I could continue, I had lost faith in an otherwise fantastic school system, and I have moved all of my kids out of their current school in order to get them away from an administration that touted a "Zero Tolerance Bullying Policy" while effectively bullying my son and my family in the process. My husband and I have argued about how to proceed, whether we should proceed, and if we could afford to proceed if it became necessary to go to court. We have been fighting meltdowns every morning in getting our son to school and his sisters have been edgy waiting for the next one to erupt. I have run the gamut of emotions dealing with this drama. We have won this battle, but there is still a war going on.
When we told our son that this drama was finished, I could see him relax. He is now willing not only to go to school, but he gets on the bus without argument. At recess he has started playing soccer with some of the other boys who have willingly and patiently taught him. (This is huge! He approached them and asked if he could play!)
I am not stopping this fight, however. Our struggles were much milder than many others I have heard, but that does not make it okay and that does not mean there won't be another gifted Aspie struggling to make it through school. I am going to become an advocate. My advocates have been fantastic. They supported our position and were great cheerleaders. Just knowing we had someone who understood and had been through it and were there for us really made things easier. I want to do that for other families too.
The biggest lessons I have learned from this are to get an advocate before you think you need one, learn everything you can about how the IEP works in your area, and save every last piece of paperwork they give you. Know your rights and do not back down! Your child's future depends on it!
I am ending this blog here because things are slowing down and I have less to say in big blocks. I really thought this fight would last a lot longer, although I am not complaining that it is over. Any further news will be on my Facebook Page: Aspie Families. Feel free to like the page, share it, and join in the discussion. It's still new, but I keep up with it a little better. Feel free to share this blog as well, as I hope it helps others who feel hopeless where their children's education is concerned. There is hope, and success is possible, I promise!
Friday, March 22, 2013
Tuesday, March 12, 2013
The Cultural Evolution of Aspergers
Today I started reading blogs and posts of Autism and Aspergers groups I follow, and a few of them got me to thinking. One said Aspergers is somewhere between Autism and Normal. The other asked, "What do you think of the term 'Aspie' to describe those individuals diagnosed with Asprgers?" Curious, I asked my Aspie why he prefers that term. His response was that Aspergers Syndrome or Autism Spectrum Disorder makes him feel like there is something wrong with him. Aspie is just who he is and makes him feel unique.
Aspie is who he is. So I wonder if this is not a disorder, but more of an evolution of human culture. If there is ever a majority of people on the Spectrum, then how would the rest of us define "normal" or "neuro-typical"? We would be the "weird" ones, the "freaks." So maybe society needs a new perspective.
Is someone "weird" just because they don't understand your language? When I worked at a major theme park in Orlando, Florida, I had the unique experience of working with people from all over the world; and while our languages were structured differently and the purpose of words varied, we still found ways to communicate. Sometimes, my Aspie will say things that are well-meaning, but can hurt his sisters' or peers' feelings. That of course, works both ways because he doesn't always interpret our language appropriately.
And even when we did speak the same language, different words had very different meanings. A fanny pack in the USA is not the same thing as in the UK. Don't test this one. Likewise my Aspie still says "playdate" instead of "hangout." To him, they are virtually the same. However, one will get him dirty looks from his peers.
A well-meaning gesture of "ok" or "peace" or asking for a "party of two" to fill a busy ride could send a very opposite message to people from Brazil or Australians and Europeans. And just like you cannot tell just by looking that someone might be an Aspie, you can't always tell just by a cursory glance which country others are from.
When I was in second-grade a few years ago (yes a few, don't argue!)my teacher gave me the opportunity to help a new student from Japan. Her name was Maki. My first impression was that she smelled different, but that was neither here nor there. Her lunches were different, her utensils were different, her clothes were different, too. It didn't matter. We became friends. I helped her with American customs and words and she taught me Japanese customs and words in return. Of course, I also remember a Michael who got me in trouble for teaching me some American and much less appropriate words. I preferred Maki's cultural education, and even now, I remember the impression she left on me.
People from the Aspie culture tend to use different coping mechanisms than the Neuro-typical culture and because they are different, we deem them as freakish and weird, rather than Aspergian. Often they speak a different dialect of the same language, making us understanding them and them understanding us take a few seconds longer and maybe even a little more effort and patience. They don't seek out attention, but that doesn't mean they won't accept it. They are not usually skilled at making friends, but that doesn't mean they don't want them and won't be good friends in return. Their gestures might seem foreign, but to them their movements are perfectly natural and acceptable. While they may seem very different, they do have a lot to teach us. Don't believe me? Ever heard of Sir Isaac Newton? Thomas Jefferson? Jim Henson? Adam Young of Owl City? Albert Einstein? Beethoven? Jane Austen? I could go on. All of them either had, have, or have been speculated to have had Aspergers.
To think of Aspergers as a disorder seems, to me, to be a misnomer. If we "normal" people were more accepting and willing to learn and embrace, maybe those with Asperger's wouldn't feel like outsiders. And, just maybe, we would see the world a little more clearly, too.
Aspie is who he is. So I wonder if this is not a disorder, but more of an evolution of human culture. If there is ever a majority of people on the Spectrum, then how would the rest of us define "normal" or "neuro-typical"? We would be the "weird" ones, the "freaks." So maybe society needs a new perspective.
Is someone "weird" just because they don't understand your language? When I worked at a major theme park in Orlando, Florida, I had the unique experience of working with people from all over the world; and while our languages were structured differently and the purpose of words varied, we still found ways to communicate. Sometimes, my Aspie will say things that are well-meaning, but can hurt his sisters' or peers' feelings. That of course, works both ways because he doesn't always interpret our language appropriately.
And even when we did speak the same language, different words had very different meanings. A fanny pack in the USA is not the same thing as in the UK. Don't test this one. Likewise my Aspie still says "playdate" instead of "hangout." To him, they are virtually the same. However, one will get him dirty looks from his peers.
A well-meaning gesture of "ok" or "peace" or asking for a "party of two" to fill a busy ride could send a very opposite message to people from Brazil or Australians and Europeans. And just like you cannot tell just by looking that someone might be an Aspie, you can't always tell just by a cursory glance which country others are from.
When I was in second-grade a few years ago (yes a few, don't argue!)my teacher gave me the opportunity to help a new student from Japan. Her name was Maki. My first impression was that she smelled different, but that was neither here nor there. Her lunches were different, her utensils were different, her clothes were different, too. It didn't matter. We became friends. I helped her with American customs and words and she taught me Japanese customs and words in return. Of course, I also remember a Michael who got me in trouble for teaching me some American and much less appropriate words. I preferred Maki's cultural education, and even now, I remember the impression she left on me.
People from the Aspie culture tend to use different coping mechanisms than the Neuro-typical culture and because they are different, we deem them as freakish and weird, rather than Aspergian. Often they speak a different dialect of the same language, making us understanding them and them understanding us take a few seconds longer and maybe even a little more effort and patience. They don't seek out attention, but that doesn't mean they won't accept it. They are not usually skilled at making friends, but that doesn't mean they don't want them and won't be good friends in return. Their gestures might seem foreign, but to them their movements are perfectly natural and acceptable. While they may seem very different, they do have a lot to teach us. Don't believe me? Ever heard of Sir Isaac Newton? Thomas Jefferson? Jim Henson? Adam Young of Owl City? Albert Einstein? Beethoven? Jane Austen? I could go on. All of them either had, have, or have been speculated to have had Aspergers.
To think of Aspergers as a disorder seems, to me, to be a misnomer. If we "normal" people were more accepting and willing to learn and embrace, maybe those with Asperger's wouldn't feel like outsiders. And, just maybe, we would see the world a little more clearly, too.
Thursday, March 7, 2013
Meltdown At School
Today I received an email from Connor's teacher saying that he was having a rough day and did something happen at home?
At home? No, but school has been stressing him out, did she not realize this? No? I could have sworn it had come up at some point in the last two months. Oh, well, Surprise!
So I went to the school and asked to speak to him. I knew he was on the verge of a meltdown. He came to the office with the Special Ed teacher, his eyes wide and vacant. He wouldn't speak. I tried taking him out of the office and finally got him to talk a bit. Then the tears began to roll down his cheeks.
Eventually, I was able to get some information from him, enough that we went back to the office to chat with the Sped teacher. We went to the conference room. Connor paced around the large wooden table, eventually settling into the chair at the head of the table. Finally, a weak smile. We were getting somewhere.
"Connor, what's wrong?" "I don't want to be here."
"Connor, why did you throw your binder across the room?" "I was frustrated."
"Connor, why were you frustrated?" "I don't know."
"Connor, what happened that made you frustrated?" "She's mad at me."
"Who is mad at you?" "My teacher."
"Why is she mad at you?" "I don't know."
"Why do you think she is mad at you?" "She raised her voice."
Digging up this much information took half an hour. Eventually, Connor opened up about his fear of being suspended again, being bored in class, trying to read when the whole class was talking, etc. His sped teacher explained they were working on higher-end activities for him to keep him from being as bored. I asked why this was not done already (Guess what? It's in his IEP that he should be getting it.) and she said because they had not realized Connor was this frustrated about it. So it takes my son throwing things and screaming and crying before we realize he really might need some help? I warned them yesterday that he was struggling to keep his composure, but I guess they thought I was joking. I know, I know, why does anything surprise me with this?
We also discussed Connor's stimming, and the Functional Behavioral Assessment person is assisting them with a more effective goal checklist and reward system. Hopefully that means her assessment will be on target. And, I managed to get her to agree to find a more appropriate way for him to vent frustration before it gets to the level it did today. We will see.
Finally, we convinced him that we had plans in place to help with boredom and frustration. Connor stopped crying and I managed to get a small laugh out of him. (He said he can't go back to class. I told him "can't" is a bad word. He said, "I can not go back to class.) At this point, I knew we had him back. After a little more resistance, we finally got him to return to class (an hour later).
As I was leaving, the principal had the nerve to ask me if he was feeling better. I had my littlest kid with me as she was sick from school today which may have just saved me from telling the principal where she could stick her phony compassion.
When we got home, I received a call from the judge who will be mediating our case. Everything that is discussed in mediation is confidential, so I may not get to share juicy details. Hopefully we can resolve this here, and we do have an advocate going to assist us. Otherwise, it's off to court we go.
Right now, though, I just hope Connor's day got better.
At home? No, but school has been stressing him out, did she not realize this? No? I could have sworn it had come up at some point in the last two months. Oh, well, Surprise!
So I went to the school and asked to speak to him. I knew he was on the verge of a meltdown. He came to the office with the Special Ed teacher, his eyes wide and vacant. He wouldn't speak. I tried taking him out of the office and finally got him to talk a bit. Then the tears began to roll down his cheeks.
Eventually, I was able to get some information from him, enough that we went back to the office to chat with the Sped teacher. We went to the conference room. Connor paced around the large wooden table, eventually settling into the chair at the head of the table. Finally, a weak smile. We were getting somewhere.
"Connor, what's wrong?" "I don't want to be here."
"Connor, why did you throw your binder across the room?" "I was frustrated."
"Connor, why were you frustrated?" "I don't know."
"Connor, what happened that made you frustrated?" "She's mad at me."
"Who is mad at you?" "My teacher."
"Why is she mad at you?" "I don't know."
"Why do you think she is mad at you?" "She raised her voice."
Digging up this much information took half an hour. Eventually, Connor opened up about his fear of being suspended again, being bored in class, trying to read when the whole class was talking, etc. His sped teacher explained they were working on higher-end activities for him to keep him from being as bored. I asked why this was not done already (Guess what? It's in his IEP that he should be getting it.) and she said because they had not realized Connor was this frustrated about it. So it takes my son throwing things and screaming and crying before we realize he really might need some help? I warned them yesterday that he was struggling to keep his composure, but I guess they thought I was joking. I know, I know, why does anything surprise me with this?
We also discussed Connor's stimming, and the Functional Behavioral Assessment person is assisting them with a more effective goal checklist and reward system. Hopefully that means her assessment will be on target. And, I managed to get her to agree to find a more appropriate way for him to vent frustration before it gets to the level it did today. We will see.
Finally, we convinced him that we had plans in place to help with boredom and frustration. Connor stopped crying and I managed to get a small laugh out of him. (He said he can't go back to class. I told him "can't" is a bad word. He said, "I can not go back to class.) At this point, I knew we had him back. After a little more resistance, we finally got him to return to class (an hour later).
As I was leaving, the principal had the nerve to ask me if he was feeling better. I had my littlest kid with me as she was sick from school today which may have just saved me from telling the principal where she could stick her phony compassion.
When we got home, I received a call from the judge who will be mediating our case. Everything that is discussed in mediation is confidential, so I may not get to share juicy details. Hopefully we can resolve this here, and we do have an advocate going to assist us. Otherwise, it's off to court we go.
Right now, though, I just hope Connor's day got better.
Wednesday, March 6, 2013
"I Don't Want To Be Fixed!"
I took my son to the neurologist today. When he wondered why he was there, he asked, "Are they going to fix me? I don't want to be fixed!" He has learned to view his differences as gifts, or if not gifts, then the things that make him special and unique. Personally, I don't think he is broken. I think he is brave and just plain awesome. (And it turns out his brain is fine, too.)
Today was a rough day school-wise, the teachers are frustrated because he won't stop humming and blurting answers, but won't give him more challenging work because he refuses to focus and take notes (He has over 100% average in Social Studies. If it was that easy, I don't think I would take notes either). They keep him in the same PE class as his accuser and tell him, and I quote, "You'll just have to handle it." So from home, I am trying to back up his teachers why he has to take notes, and how he can improve so he will be ready for Middle School, but I cannot get his teachers to back him up. In all fairness, we have had some amazing teachers. I won't even say his current teacher is bad. However, I do think the culture that the school and certain members of the district office have created do not in any way provide appropriate education for ALL students. From what I understand, there are great schools in our district and I know of several phenomenal teachers, but right now, it is very difficult to support anyone at that school. This is SO FRUSTRATING! And what I really don't understand is how the district can blatantly thumb their noses at IDEA (Individuals with Disabilities Education Act) and there are no repercussions from the State or Federal levels. It makes me TWITCH!
Sorry, I really had no intention to start another rant. What I really wanted to do was share my son's blog, an interesting perspective into his world. He wants to be able to advocate for kids like him which is admirable. I am monitoring it with him, but the words are his own. He hates to write but wants to share, so I am supporting it. If you share or comment, please keep it clean and respectful. It's one thing to see it from Mom's point-of-view; quite another to get a glimpse through his window....
My World (and how it drives everyone nuts!!!) http://cehsworld.blogspot.com/
Today was a rough day school-wise, the teachers are frustrated because he won't stop humming and blurting answers, but won't give him more challenging work because he refuses to focus and take notes (He has over 100% average in Social Studies. If it was that easy, I don't think I would take notes either). They keep him in the same PE class as his accuser and tell him, and I quote, "You'll just have to handle it." So from home, I am trying to back up his teachers why he has to take notes, and how he can improve so he will be ready for Middle School, but I cannot get his teachers to back him up. In all fairness, we have had some amazing teachers. I won't even say his current teacher is bad. However, I do think the culture that the school and certain members of the district office have created do not in any way provide appropriate education for ALL students. From what I understand, there are great schools in our district and I know of several phenomenal teachers, but right now, it is very difficult to support anyone at that school. This is SO FRUSTRATING! And what I really don't understand is how the district can blatantly thumb their noses at IDEA (Individuals with Disabilities Education Act) and there are no repercussions from the State or Federal levels. It makes me TWITCH!
Sorry, I really had no intention to start another rant. What I really wanted to do was share my son's blog, an interesting perspective into his world. He wants to be able to advocate for kids like him which is admirable. I am monitoring it with him, but the words are his own. He hates to write but wants to share, so I am supporting it. If you share or comment, please keep it clean and respectful. It's one thing to see it from Mom's point-of-view; quite another to get a glimpse through his window....
My World (and how it drives everyone nuts!!!) http://cehsworld.blogspot.com/
Tuesday, March 5, 2013
The Great SPED Coaster
If this drama were a real roller coaster, I'd have been puking weeks ago. I am so ready to get off this ride. Unfortunately, we are in it until it stops and I think I see the corkscrew coming up.
I hate hanging upside down, but I knew it was coming.: The district has formally disagreed with our administrative request against the principal. The school and district have "thoroughly" investigated and have found no wrongdoing. They have acted accordingly, just as they would for any student who exhibited the same behavior. Puke.
While it is frustrating, as long as they refuse to see my son as "Autistic," and prefer to instead brand him as "Bad," I really expect nothing more from them. I don't expect them to redirect his actions into more appropriate behaviors, nor anticipate praise when he makes a "good choice" on his own accord. Especially since, once again, he has had P.E. with his former classmates (who they HAD to get him away from) because, as his teacher said, it was my son's job to handle whatever happened in P.E., not the teachers' job. Awesome! I'm glad they are teaching my son some responsibility at school! One less thing the teachers have to handle. I know they are overworked, so I am glad they are cutting out the frivolous stuff, like making sure ALL the kids are safe. Puke.
Now the fun going down the hill part. I called the local Autism Society which was able to find me names of advocates. I have two now helping me, one of which is very indignant on our behalf. That's about as far as we have gone so far, but I feel very validated at least. Apparently we are not the only family in the area with similar problems, including buying cars from the same used-car dealer (see previous post). She is also helping us pursue further action which may take years, but I am invested now. I pull my safety harness until it clicks a little tighter.
Ooh! Now a really big drop! Going to release my death-grip on the harness for this one. Got to take my boy to see his new middle school last night. We haven't seen him so giddy--yes, giddy, really--since Christmas. He was so happy! And as much as I hate the idea of having a child old enough for middle school, I was giddy, too! I spoke with the guidance counselor at the school, and she was extremely helpful. She mentioned bringing in an autism specialist to figure out what my boy needs and to even work with his teachers to make sure he is successful in this new school. I teared up. It was embarrassing, but I cry over everything. I didn't district-bash, or principal-bash, but she really seemed to understand. Here's hoping....
So, now the coaster has stalled...all we can do is wait. I am not expecting our request for mediation to be accepted, which means we get to stay on the ride longer. Yay. However, I have more help now and more coming, so I don't know that I am prepared to finish this, but I will finish it, and not the way the school/district is pushing for. We are apparently not the only family on this roller coaster and some have been on it for years. If they can do it, I can. Bring. It. On!
I hate hanging upside down, but I knew it was coming.: The district has formally disagreed with our administrative request against the principal. The school and district have "thoroughly" investigated and have found no wrongdoing. They have acted accordingly, just as they would for any student who exhibited the same behavior. Puke.
While it is frustrating, as long as they refuse to see my son as "Autistic," and prefer to instead brand him as "Bad," I really expect nothing more from them. I don't expect them to redirect his actions into more appropriate behaviors, nor anticipate praise when he makes a "good choice" on his own accord. Especially since, once again, he has had P.E. with his former classmates (who they HAD to get him away from) because, as his teacher said, it was my son's job to handle whatever happened in P.E., not the teachers' job. Awesome! I'm glad they are teaching my son some responsibility at school! One less thing the teachers have to handle. I know they are overworked, so I am glad they are cutting out the frivolous stuff, like making sure ALL the kids are safe. Puke.
Now the fun going down the hill part. I called the local Autism Society which was able to find me names of advocates. I have two now helping me, one of which is very indignant on our behalf. That's about as far as we have gone so far, but I feel very validated at least. Apparently we are not the only family in the area with similar problems, including buying cars from the same used-car dealer (see previous post). She is also helping us pursue further action which may take years, but I am invested now. I pull my safety harness until it clicks a little tighter.
Ooh! Now a really big drop! Going to release my death-grip on the harness for this one. Got to take my boy to see his new middle school last night. We haven't seen him so giddy--yes, giddy, really--since Christmas. He was so happy! And as much as I hate the idea of having a child old enough for middle school, I was giddy, too! I spoke with the guidance counselor at the school, and she was extremely helpful. She mentioned bringing in an autism specialist to figure out what my boy needs and to even work with his teachers to make sure he is successful in this new school. I teared up. It was embarrassing, but I cry over everything. I didn't district-bash, or principal-bash, but she really seemed to understand. Here's hoping....
So, now the coaster has stalled...all we can do is wait. I am not expecting our request for mediation to be accepted, which means we get to stay on the ride longer. Yay. However, I have more help now and more coming, so I don't know that I am prepared to finish this, but I will finish it, and not the way the school/district is pushing for. We are apparently not the only family on this roller coaster and some have been on it for years. If they can do it, I can. Bring. It. On!
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