The Light at the End of the Tunnel is Not an Oncoming Train!

I haven't posted in a while because I thought this blog had, more or less, run its course. My son was accepted at a school that instead of forcing paper and policies down our throats, was interested in working with him on the ground level. Before school began, the Assistant Principal showed him around and told him how to get through the halls, which stairs to take, etc. His Guidance Counselor emailed teachers to let them know he had an IEP and Behavior Plan in place, but that the parents were more than happy to work things out without it. The first day of school he made two new friends and became reacquainted with an old friend (By the way, this was HUGE). Several days into the first week, he started having anxiety attacks because he could not organize his locker and make it to class on time when he did go to his locker. I called the guidance counselor to let her know, and THAT afternoon, she had talked with Connor and his teachers and come up with a plan. We didn't need to call a new IEP meeting. All it took was one very amicable phone call and Connor got out of the car this morning without a meltdown. This was a beautiful thing! This is how parent-school interactions should be!

Now, I still read and hear stories how schools are failing other students diagnosed with Autism. Schools are still ignoring behavioral needs, especially when the children are so intellectually inclined, or do not communicate effectively. I've seen teachers leave autistic kids in the special ed rooms doing who knows what while they discuss their personal lives. They are doing these kids a dis-service. These kids are so capable and they understand so much more than we give them credit for, because we are so focused on the meltdowns or teaching them to use their words, or helping siblings understand and teaching them to not be embarrassed of their brother or sister.

Schools are still writing bad IEP's because they do not want to pay for services, or take the time to actually customize a child's IEP. They don't offer you the Behavioral Intervention Plan because it might make more work for them. ALL children are entitled to a "free and appropriate education," not just the ones who fit into the school's pretty little box. I tell my "normal" kids to be leaders not followers, so they don't fit the mold either. I'm proud of that. ALL of my kids are "weird." I wouldn't have it any other way!

My point is, the schools are generally not looking out for our kids, they are looking out for their institution. IEP's force them to look out for that one student. Don't trust what they tell you is true if your gut tells you it is not. I've had district-level educators flat-out lie to my face in the IEP meetings. You have to get pushy and fight, and become that parent you always whispered about and stayed ten feet away from because you just aren't sure when they are going to snap. You have to rally and research and find those organizations that WILL help you. I've said it many times, and I will say it many more: Get an advocate! They are out there. Many are free, some are not. Read your parent' handbooks that the school gives you and the IDEA procedural safeguards and use that information that the schools give you to teach them to take care of your child. Cry. Scream. Mutter bad words under your breath so the kids don't hear you. Then do more research. Call advocacy groups or Autism Societies or local hospitals--Somebody will know someone else that will eventually be able to hook you up with help. I never thought I needed an advocate until last year. After seeing how they help, I wish I'd had one since Day One.

So, stop reading my rant already and start making calls. Fire up your computer or tablet or smartphone and look up autism or disability advocates. Tell your school in writing you want a behavioral intervention plan. Your child IS more than a test score. Fight now so your kids don't have to! Fight so that your child can have a school like my son now has, that is willing to work WITH parents and not against us. Good luck! I believe in you!

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.

"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/

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.

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.

An Open Letter to Our School

Dear Teachers, Principal, Assistant Principal, Superintendent, and Students:

I just wanted to take a moment to thank you for the learning experiences you have provided my son.

You may not be aware of this, but my son has Asperger's Disorder. "What is that?" You ask.

Well, it is the reason he won't look at you when you speak to him or say "hi" to you when you say "hi" in the hallway, even though he desperately wants to be your friend.

It is the reason he walks around on the playground looking at rocks instead of playing, because he does not know how to join in.

It is the reason he blurts out answers in the middle of class, despite the teacher never having called on him.

It is the reason that he holds his ears and cries during pep rallies and assemblies, because he doesn't just hear the noise. He hears every noise.

It is the reason that in the lunchroom he makes inappropriate noises or speaks too loudly.

It is the reason when he gets anxious, he sings or hums during class or makes extra trips to the restroom to get away and calm himself.

It is the reason he tells on his friends for not following instructions during group projects. He is not being a snitch. He just has a strong sense of right and wrong.

It is the reason his desk has papers sticking out in all directions and he cannot find anything.

It is the reason that, as one P.E. teacher told him, "he runs like a six-year-old."

It is the reason he comes home from school and bursts out crying because his "friends" called him "gay" or "arrogant" or "stupid."

It is the reason he says he wants to "not be in this world anymore" when a teacher he respects says he is "weird."

Now that you understand my son a little better, please accept my gratitude for his exceptional education.

A sincere thank you to his 2nd grade teacher for allowing him to be "quirky" because that was his personality. He still talks about you.

Thank you to his 3rd grade teacher for helping him with his organizational and study skills.

Thank you to his 4th grade teacher for deciding that he was a behavior problem and driving him to the point of trying to hurt himself at nine-years-old and resulting in a trip to the hospital. It's okay because she had had an autistic child before, so she knew what she was doing.

Thank you to his 5th grade teacher for showing him kindness and lenience and patience.

Thank you to the students who tease him and call him names and goad him. I am sure that was a fun time!

Thank you to the Music and PE teachers for their aforementioned motivational efforts.

Thank you to the School Psychologist for, as she put it, "not knowing how to handle him since he presented as Gifted and Autistic." That made things so much easier on him.

Thank you to the Guidance Counselor that instructed him in a group project which led to his suspension for two days.

A special thank you to the principal, that in her infinite wisdom and dedication to all of her students, refused to permit the IEP accommodations to which he was entitled and for suspending him for an action that did not occur, which she would have realized if she was true to her calling as an educator.

Thank you to the school district as well for their support of the principal and otherwise general apathy.

All of my son's experiences with you have taught him perseverance and that fairness and kindness are not found in everyone; that all teachers are not intent on his full education, although they are happy to take credit for his test scores. You have taught him how to be strong in the face of adversity. So for that, I thank you. He has received quite an education.

Sincerely,

Mom