"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/

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!

IEP Saga Continued

Well, today I turned in the request for Mediation, which is apparently the next step when the IEP meeting fails, as well as paperwork for a Functional Behavior Analysis. In addition, I picked up my son's records that I had requested. At 15 cents per page, I only paid $4.80 and that meant some things had to be missing.

Going through the paperwork, I found all of his academic records. I found his suspension information. What I didn't find-besides my correct maiden name-was anything having to do with his special education needs: no principal's behavior plan which has been implemented, no refute of the suspension that we requested go into the files, no IEP, no testing evaluations which were conducted to determine IEP eligibility, no letter from my son's psychiatrist stating that he has autism. I do, however, have extra copies of his social security card and birth certificate, so it wasn't a total loss.

All correspondences with the principal go unanswered. My son was moved out of his regular classroom to get him away from a classmate, yet they have PE together. He has been left to fend for himself while educators turn a blind eye. To give her credit, my son's new classroom teacher has been super supportive and when I told her of my concerns, she arranged for him to take PE with another class. Still not an ideal situation, but we only have a few months left in this school and I am picking my battles. God knows, I have enough to pick from.

And you know what really makes me twitch? I am not confrontational. I am not anti-school. But situations, especially when our kids are involved turn us into warriors. So here I am: Xena, Warrior Mom. I'm sure the school considers me a different kind of mother, but I've quit worrying about their opinion of me. I'd rather be on their good side, but being nice didn't work. I haven't even gone into these meetings confrontational, believe it or not.

I can't figure out if our school thinks we are stupid or if they truly believe in the way they are doing things. I cannot see any way they are in compliance with IDEA. My mother always said I could argue both sides of any situation, but I've got nothing here. I cannot see any reason not to comply with federal guidelines for an IEP or to punish a child for acting autistically without any form of correction before extreme punishment. While we have a lot of people, including educators on local, state, and federal levels, indignant on our behalf; most have said we won't win a fight with the school system. I'm not worried, and I'm not quitting. No one who ever accomplished change on a massive scale had it easy. I'm not that ambitious; I'm only trying to change one school system, not the world...yet.

Fair, Honest, And Right

I hate that our troubles with the school have deteriorated so far as they have. To be honest, it isn't fair and it's not right.

To be honest, I used to think my son had behavior problems, too. My husband said I didn't discipline him enough, doctors said I didn't understand boys, and psychologists batted around diagnoses from ADHD to Bipolar Disorder. We still cannot find a therapist he meshes with and who treats what he needs them to. I've made apologies for his behavior and felt guilty when he'd have a meltdown in public that caused the condescending stares of passers-by. I've apologized and felt guilty, and tried to compensate for every time I've had to take care of my son instead of giving the girls equal or even adequate attention. My girls have had to be very understanding and helpful, despite being embarrassed when their friends witness their brother's fits or upset when Mommy and Daddy have to take care of their brother once again. When my son was little, before we knew, we would go out to dinner, only to have to walk out when he screamed throughout the restaurant. It hurts to watch him cry because his sisters have friends and he doesn't and that he (or we) cannot always participate in things that would be fun or good for him because they may also be too loud or busy for him to function.

To be fair, we have had great teachers (mostly)--a phenomenal school system--so far as you don't buck the system. Well, I've never been one to follow the crowd, but that does not mean I've gone looking for trouble either. My daughters have fabulous teachers who challenge them academically. The girls talk a lot, but talking is the only thing that has ever got them in trouble. My son as had some exceptional teachers, including his current one, so fortunately, he will leave elementary school with better memories than I send him off with. I am hoping middle school will be better for him. I tell him it will be without knowing if I am lying or not. I have to believe it, because I cannot imagine it getting worse.

To be right, however, is not necessarily to be fair or honest. And being right, means I take care of all of my kids and put them first, as does any mother. It means that I no longer care about the dirty looks or comments behind our backs. It means no apologies. My son has a neurological condition. Would you make apologies if your child had diabetes or a learning disability or glasses? The parent's of children at school with peanut allergies do not make excuses, and in fact entire classrooms monitor what they bring into classrooms to help them. A meltdown may not kill my son, but ignorance and apathy can. He has already been to the hospital once for trying to kill himself (he was 9) because his teacher was always angry with him and kids teased him constantly.

To be right means that if the school refuses to understand autism, then I must fight until they do--not just for my son, but for those that are coming after him. That may sound obnoxious as you read it, but it is the truth. I truly hope that the school is ignorant rather than vengeful. Education in as much about learning as it is about teaching. My goal is not vengeance despite my anger at the entire situation. I want the school and district personnel to understand how to help all of their students, instead of first assuming the worst of them.

For anyone who knows me, I don't like to rock the boat and I second-guess everything. While this mess with the school sucks, I don't second guess fighting this battle or putting it out there. I know if we are going through this, there are others sailing similar seas. Fortunately, I have a great support system backing me up and making sure my son is okay. I know that while this is tough and may not end the way I want it to, it won't be because I haven't made every effort possible and used every resource possible and at the very least, brought awareness.

All Kids With Autism Are Alike

At least, this is what they told us at our last IEP meeting. By "they" I mean the principal, the school psychologist, and the special education rep from the district office they brought in to strong-arm us.

I really, really want to be indignant, because I did well at the last IEP meeting. I caught them off guard and was prepared, and they were agreeing with what we wanted. We weren't asking for anything crazy. We just wanted specific ways they were going to work on our son's social skills. We wanted measurable goals. We wanted Present Levels of Functional Performance to address his Autism. We wanted them to address his communication needs and Autism in some form on his IEP. Our IEP before this meeting was fifteen pages. The "fixed" IEP was fifteen pages. How much do you think they added?

Communication: Denied because school psychologist says my boy can communicate very well. Yes, he knows big words. He speaks like an adult. However, he does not understand nuances of nonverbal communication like sarcasm, body language, facial expressions, etc. Everyone in the IEP meeting explained to us that the IEP question about "Does the student have communication needs?" only referred to children requiring technological devices to assist them. I asked how we were going to address his communication deficit then. Their plan, was to put everything he needs into a Functional Behavior Plan, their ruby slippers for the IEP. The FBP was going to give them the tools to help our son succeed. When they said this, I kept waiting for the orchestral music to begin, but I guess they forgot to add the soundtrack to the little show they were putting on for us.

Specificity: Denied on the grounds that if something doesn't work, then they can't try anything new. Guess what? You can call as many IEP meetings as you want as often as you want. I received a pat on the head. Does this mean I get a cookie? Central Office Guy said that he had seen IEPs that were specific and, well, many areas didn't know how to write an IEP so we should just listen to him. (Smarmy car salesman.) The IEP, he said, using small words for our benefit, was only to set goals for Connor, a roadmap. The FBP, was how they would accomplish it. Since not everyone with an IEP has to have a FBP, it struck us that they are still making our son out to be a behavior problem, rather than Autistic. Hmmm....

Measurability: Apparently the goals are already measurable because when my son does something wrong, they can correct it. Corrective is not instructional and if they are only measuring infractions, then they are not measuring successes. Good, the last thing my kid needs is positive reinforcement; its not like he has any friends at school to give it to him.

Present Levels of Functional Performance: I wanted to laugh and cry at the same time when they denied this one. School Psychologist explained that Present Level of Performance is solely for Academic needs. Reinforcement from Central Office Guy/Smarmy Car Salesman and smirky grin of acknowledgment from the Principal. But, I countered, the advocate endorsed by the state and in my IDEA handbook said that this was required. Another Pat on the head. Well, said Smarmy Central Office Salesman, the advocates are "good people" and he had been through their training and it was lacking. We were, he said, better off doing as he said instead.

Still not giving up, I asked, if we cannot be specific and we cannot put in communication requirements, how then are we addressing his Autism in the IEP? Here's the good part! Smarmy Central Office Carsalesman looked at us like we might also need an IEP. Because Autsim is listed as his disability on page 1 of his IEP, that tells all current and future educators how they should help our son. Apparently, everyone in the district has had extensive Autism training, so they know how to teach to Autistic children. Good thing Autistic kids all have the same meltdown triggers, communication needs, peer relationships, intellectual gifts, etc. Besides, I asked, since the current Autism provisions had been in place for a year already, why had they not already been doing the things they had been trained to do? In fact, why did we have to call yet another meeting to address his Autism, if the label on the IEP was all they needed with which to help him succeed? A lot of non-answers and regurgitation of previous statements followed. I see.

We did not approve nor sign the IEP. None of our concerns were addressed with anything less than disdain, so the Crazy Sped Mom costume is being donned once more. An IEP should be in place to protect children, not to give them unattainable and unmeasurable goals or to have a place to hide a behavioral plan, an agenda by the principal which she refuses to review.

If all Autistic children were alike, then there would not be a need for an Individualized Education Program. Just saying.

Asperger's and the (Not So) Easy IEP

We had an IEP meeting yesterday morning. I was prepared but nervous. They were non compliant on a few key parts and I was going to address them. My big girl pants were on. When the principal brought up her "behavior plan," I was prepared to say, "Thank you for your time," and walk out. I was going to be SO polite about it too!

They played right into my hands. Only his regular teacher brought a notebook, the principal had some post-its, and I had a folder full of every previous IEP, a few friends' IEP's, notes from an advocate, and a momma's sense of justice. They said since I called for a meeting, why didn't I start things?

PERFECT! From page 1, I was going. Not one place on the IEP addressed his Autism and the only person who could take care of that on the IEP was missing from the IEP meeting! Interesting, because they knew why I had called for the meeting.

Communication needs: They had said no, he has none. The advocate told me when I met him, that yes, in fact, he does and this is where we put it, on page four under "Communication Needs." My boy can articulate and use words I have to look up, but he does not understand body language and sarcasm and other nuances of language that become more and more prevalent as one gets older. We received some resistance here. The principal said that "communication needs" meant "assisted technology." I told them that the advocate disagreed, so the principal left the meeting to make a phone call and when she returned she had more post-it notes and said that while they would not address it on page 4, we could put it on page 7. As long as it addresses everything that it would have on page 4, I was okay with that.

I had just gotten started. I was beginning to enjoy this now that I understood what I could ask for. We came to the crux of our complaints. On every individual class, they had typed "Social Skill Instruction" requiring 90% mastery and this would be accomplished through "Teacher Observations." There were no goals listed, no measurable criteria. All it said was he "will use time appropriately" and other equally vague statements. We asked how the observations were measured. We were told when the teacher notices, she corrects the action. That is not measurable nor is it appropriate. That means there is no positive reinforcement, only correction when he does something "wrong." So, we had them break down the goals to be more specific, measurable, and positive.

Blank stares came from across the table.

No one knew how to do that. The computer program was "Easy IEP." What I was asking for would not be easy. How would they do what I was asking? Uneasy glances crossed the table. Not me, I was patiently waiting for an answer. Finally, one of the teachers remembered there was a "customize" button on the program. Apparently, they were going to have to customize, that is tailor, the Individualized Educational Program to my son's needs. Huh? Crazy!?!

Not such an "Easy IEP" now, was it? They were actually going to have to type in words instead of just opening the drop-down box. It was a lot to ask, I am sure. But my son has been bullied and suspended for the behaviors they don't like, so they are going to have to account for things a little bit more. Well, a lot more.

So an hour and a half later, the principal had a table full of post-it notes, the special ed teacher looked challenged, the guidance counselor looked like she would rather be somewhere else, and we never did get to the principal's behavior plan. I had been looking forward to that part! In conclusion, we had to schedule another meeting because they weren't ready with the staff or knowledge to put a proper IEP in place. I am curious to see what happens the next time they get a student like mine, and it WILL happen. Autism diagnoses are on the rise. I hope they prepare. The next momma may not play so nice. Of course, I'm not done yet....

I bet the school can't wait to get rid of me! Alas, I have a kindergartner and a third-grader still there....

Suspended for Being Autistic?

My 11-year-old was suspended a few weeks ago, and I have been afraid to talk about it. Steam and cry and scream and throw things, sure, but talk?

My son has Aspergers. Don't let that scare you. It just means he doesn't understand you either. He is gifted, makes mostly A's, and comes home jumping up and down because, and I quote, "Order of Operations is SO COOL!" I disagree, but that is not the point right now. He loves classical music and takes piano lessons. Recently, my boy made the newspaper for achieving 1st place in a county-wide speech contest representing his elementary school.

Sounds like a deviant already, right?

So his class was assigned a group project in which my son, always the last man out because he's "different" (another bad word around here), ended up going with a group of three girls whom he has had altercations with before. They have teased him, stolen his juice at lunch, etc. Typical bratty 5th grade girls, but to C.E., that is enough to send him into major meltdown mode. He got a talking to from the vice-principal for that. Emotional meltdowns due to bullying mean you are a bad kid.

One of the girls decided to be the boss and told them all how they were going to make a coffee pot together (the group assignment was about cooperation, after all). C.E. was ordered to be the pot, another girl was instructed to execute a back-bend and C.E. was told to pour the coffee onto the "table"? As he tipped, the trajectory of his hand did also, and he ended up inches from just below her waist. He did not touch her. In fact, as soon as he noticed where he had been tipping, he jerked his hand away embarrassed. The girls giggled and taking the social cue from them, he thought all was okay. The teacher saw nothing and the class continued.

The next day went on as normal.

TWO days later, I received a call from the principal that C.E. had made a poor choice and had "pretended to inappropriately touch a girl..." 1. C.E. does not pretend, 2. He has no interest in girls, 3. He gets nervous in groups, 4. The word "pretend" implies intent; there was none, 5. C.E. was never given the chance to explain, 6. The teacher never saw it, 7. C.E. had never been in this type of trouble before. All of these points we pointed out to the principal, but she refused to lift the suspension or consider alternatives.

The suspension was effected on Friday, so we had a tough weekend. We had to explain to C.E. why he was suspended and what it meant, and we had no answers when he asked why he was suspended because he did not do what they said he did. He refused to sleep in his bed because he said he did not deserve a bed, he said he should be in jail if he is so bad, and he shouldn't be in this world anymore.

On Monday afternoon, we were called in to see the principal again who refused to discuss it again. She showed us the behavior plan she was implementing for my son which detailed other "sexually perverse" behaviors such as rocking back and forth in line or waiting against a wall. These are Autistic traits and while I see how they could be taken in the wrong way, not once has a teacher or staff member corrected his troublesome action, despite listing "Social Skill Instruction" 11 times in his IEP! Instead, they place him in an Inclusion classroom so he can be better monitored and tell us if they happen again, he could be charged with sexual battery.

If you knew my kid, this would be laughable except that the accusation is evil and disgusting.

When a classmate told the rest of the class that C.E. was "gay," that child had to sign a paper about why it was bad.

When two 5th grade girls told my Kindergartner about oral sex a few years ago, I was apparently mistaken because the girls I mentioned were good girls and they just wouldn't do that.

Yes my son, who did not do anything, goes straight to suspension?

I am angry and sad. C.E. has enough trouble making friends and now they have labelled him as a pervert because God forbid they should actually address his disability! He tried to participate in a group, a difficult task for him, and he was punished for it. He used to love school, now every morning we battle to get up and go, and I ache because I have to send him to a place where I feel he is mistreated.

So now I've talked about it. I still feel like crying and throwing things. I'm still going to fight because my child is not the only one whose autism is misunderstood and who is punished for a neurological condition he cannot help. I don't know that I will get anywhere; but it won't be because I haven't tried, and certainly won't be because I have given up.

Kids Gone Wild!

Kids today!

This week, two six-year-olds were suspended for using their fingers as guns while playing at recess. That sounds dangerous! I used to do that as a kid. I guess I am lucky I turned out okay. I don't even like guns. How weird! I got my adversaries every time; I was a good shot! I can't believe I'm not running the NRA by now.

A little boy in elementary school was suspended for three days for singing the song, "I'm sexy and I know it" to another little girl. When I was in Kindergarten, I kissed a boy in the cardboard train and all I got was a scolding and my M&M's taken away. I'm sure glad I didn't sing to him or I might have been in bigger trouble.

Another elementary student was suspended for two days for saying his teacher was "cute." Well, that was certainly out of line!

In another case, a seven-year-old kicked a bully in the groin when that bully had tried to choke him. He was suspended for sexual harassment. Good! Glad we have our priorities straight. I'd hate to think those Zero Tolerance Bullying Policies weren't effective.

And another--an Autistic boy was suspended for two days for coming too close to a female classmate. Good thing he didn't actually touch her or he might have been arrested.

When my daughter was in Kindergarten, two fifth-grade girls taught her about oral sex. I called the principal and was told that they were good girls, and that either my daughter or I was mistaken. No double standard there!

As you can see, our elementary school kids are out of control! From pretending, to singing, to being in proximity, to defending themselves, these kids just don't have their heads on straight! Where are their parents?

The list goes on. I could whine all day and not cover every ridiculous incident out there, and the numbers are growing.

Seriously, why are we attributing sexual urges and responses to children who don't even know what the word "sexual" means? How does it make sense to punish these children by kicking them out of school when we should be using these moments as teaching opportunities for the school, students, and parents? Oh my God! Did I just say we should teach kids in schools? I digress....

Don't misunderstand, sexual harassment is nothing to joke about, but neither is falsely accusing a child who has no grounds for defense nor intent to harm. We need to find some common sense--some perspective. Teach our kids what is a good touch and what is a bad touch, what is a good look and what is a bad look, etc. Parents need to stop inventing reasons to damage an innocent child's school record and self-esteem by irresponsibly accusing classmates. And elementary schools, if you are going to suspend students for defending themselves, or for looking at someone the wrong way, or pretending, then come up with a legitimate, effective policy or God forbid, teach them.