25 Things I've Learned About Asperger's and the IEP

What my adventures with our IEP have taught me:

1. The school is NOT always looking out for your child's best interests. That is YOUR job and responsibility.

2. You can NEVER be OVER-prepared for an IEP meeting.

3. You can NEVER do TOO MUCH research. Every little piece of info, no matter how small, can be useful.

4. According to FEDERAL guidelines, the IEP MUST BE MEASURABLE.

5. What DOESN'T go into the IEP is at least as important as what gets put into it. Know what you can request for your child.

6. Asking for ALL records, both cumulative and confidential, does not necessarily get you ALL of your child's records even though you are entitled to them.

7. The word AUTISM does not, in fact, tell all educators how to handle your INDIVIDUAL child.

8. INDIVIDUALIZED Educational Programs are not 'one size fits all.' They might actually have to hit the 'customize' button.

9. RECORD every meeting. At least, take thorough notes.

10. ALWAYS ask WHY? or WHY NOT?

11. Take people with you: advocates, friends, state department of education representatives: build an army. The school will.

12. SOCIAL problems are not the same as BEHAVIORAL problems and CAN be addressed in the IEP.

13. NEVER sign the IEP in the meeting, no matter how much they cajole you to do so. You have 14 calendar days to reread it and think about it before you sign or don't sign.

14. Keep your Procedural Safeguards Book handy and maybe even read it once in a while. It will all seem unnecessary until it isn't.

15. UTILIZE any and all RESOURCES available to you. As soon as you get an IEP for your child, go to an advocate and have them explain every page to you. You will appreciate it.

16. Be nice to your IEP team, even if it makes you twitch.

17. Get EVERYTHING in writing! No exceptions. Email is a great way to maintain correspondence.

18. CREATE a binder that has ALL records pertaining to your child's education and IEP. Become a hoarder with this information. We are on our 4th IEP in a year and I have every one, all of the testing, letter from his psychologist, sample IEP's, notes--I really mean everything.

19. DO NOT let the school talk you out of anything you need for your child, or into anything you don't.

20. Just because the district representative says you have to do everything their way doesn't mean they do not have to still comply with federal requirements.

21. You can call as many IEP meetings as you like, as many times as you like.

22. DON"T SETTLE for less. As long as you have reasonable requests, you have every right to them.

23. YOU are your child's BEST ADVOCATE! The principal may cower under a desk when you walk into the school, but it isn't your job to be their best friend. Your job is to make sure your child is in a safe environment and receiving an appropriate education.

24. If your child has a dual diagnosis, you are likely to have double the battle to meet their needs.

25. No matter how difficult the journey, the cause is worth it.

Note: These are my personal experiences with one school and do not reflect the experiences of everyone in every school. That being said, I also know this is not an isolated incident, either.

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.

How An IEP Meeting Is Like Buying A Used Car

I hate buying cars. I hate IEP meetings. I hate going into something and having no clue what I am supposed to say or do or what is needed or allowed. It makes me twitch.

I've known since he was three that my boy had issues. I've consulted with his teachers and tried to make sure we had a positive relationship with them. We let our son know that his school and parents were a team. This wasn't easy, because we had no diagnosis to back us up, so we were actually excited when we finally got his diagnosis last year. It was a gift of progress wrapped in a bow of relief.

Naively, I thought that our school problems would now be over, because the school would now also know what they were dealing with and could help him. An IEP seemed like salvation, a vehicle for a positive educational experience. Now, we could help him manage school without the trauma and drama which plagued almost every school day. Unfortunately, I approached it all wrong.

I went into our first IEP meeting and wanted to help the teachers, classmates and school handle his outbursts and meltdowns and peer relationships and so on. I also had no idea what was supposed to be in an IEP and trusted that the school, having created countless IEPs before, knew what they were doing and had the students' best interests at heart. This time, it was my student. Naive. It was not my best parenting moment. I'd bought a lemon.

The second IEP, we had a new special ed teacher and his general ed teacher seemed on the ball and worked to get him a few accommodations that had been denied to him before. Thinking this was what he needed, I bought it. It looked pretty, had some nice features, but I failed to look under the hood.

Several classroom meltdowns, bullying, and a suspension later, I went back to the lot and demanded another car, er, IEP.

Third time's the charm, right? This time, I consulted a mechanic--a special education advocate who graciously spent two hours going over the IEP, page by page. We talked about what was on it, what wasn't, and what needed to be. I was not yet an expert, but I definitely went back to the lot armed for battle. I pushed my sleeves up and let them have it. They looked as though they had never seen an IEP before. Or never had a parent push back before.

We didn't leave with an IEP yet, although the school seems to be paying attention now. The IEP needs some new parts. When the school has completed refurbishing it, we will go back into negotiations. The new one had better be shiny and like new and this time, it had better make it off the lot!

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.