Getting your GenEd teachers ready for your autistic kid

School is starting! School is starting! SCHOOL IS STARTING!!!! For us, it starts on Wednesday, I think it's probably already started for a bunch of you. LUCKY.

First, I guess, some background: Child 1 is what they call "fully included," which means he is in a General Education (GenEd) classroom with supports that are specified in his IEP ("supports" include a 1:1 aide, being pulled out for individual instruction, as well as various therapies, etc.). And school districts being what they are (read: tight asses), General Education teachers are rarely given appropriate training on how to have a Special Education kid in their class. Unless they have personal experience or have had a kid in their class before, oftentimes your IEP kid will be the first IEP kid they've ever taught. This has been the case for 3 of the last 5 teachers we've had, and I actually don't know if our teacher this year has any experience. As Child 1 gets older, it's becoming less and less important. Then again we haven't hit middle school yet. *gulp*

I heard from the school last week about who Child 1's teacher is going to be (we got the good one! Then again, we get the teacher I ask for every year, because... do you really want to mess with me if you don't give my kid the best possible option? No, you do not want me to be upset with you about the choices you have made for my child, if they are different from what I have requested. I know, I sound like an obnoxious bitch, but I promise you I only do this for my autistic kid; with the other one we just roll the dice like everybody else). Anyway, as part of my preparation for having a new teacher, I asked around on Facebook if anybody had any suggestions for some articles I could send him. In asking around, I found some great resources (links below) but also the advice (thank you Rhonda) that no one article is going to encompass all the information about my child that his teacher will need to know, and if I really want to help my teacher understand how to work with my child, what I send should be written by me.

This is really good advice, and I completely agree, but the crux of my advice to you, my reader who has a child with autism or an IEP or a 504, is that you are the one in charge here. You can't ever assume that anybody who is employed by your school district will 1. know your child well enough to know what is in their best interest, 2. have the necessary skills and training to carry that out and 3. have the motivation to even make it happen. You have to be on top of the IEP team, making sure it is being carried out correctly, and if there's something wrong, it is you who are responsible for finding that out and starting the process to fix it. I know... that kind of sucks. I mean, I don't know about you guys, but I'm no teacher; I've got no fucking clue how to teach anybody, much less a class full of kids, but I do know my kid; I know how to speak up and I know my rights. I also know that if I don't keep on top of things, my kid could very very easily slip through the cracks and it is my responsibility, as my child's best advocate, to make sure that doesn't happen.

So, if the issue is how to prepare your GenEd teacher for your SPED kid, you need to take that on, yourself. Like I said, never assume that they will know anything; in fact, to be on the safe side, you should assume that they know nothing. I've had teachers stop me in the hallway to ask advice on how to handle their autistic student; it's not their fault, they just don't get the needed training, and they likely never will. But it's not because they don't want to know, so it's your job to provide them with the information they need. Again. That kind of sucks that you have to do it; but that's the reality.

Before school starts every year I like to meet with our new teacher in person to discuss the details of my child, but some people like to write something up and give to them. My friend Michelle, who blogs at She's Always Write, and can be found on Twitter here, sent me the "resume" that she uses for her son, and I thought it was so awesome and well written that I asked her if I could share it here (I've removed the personal information about her son). This was written for her son, who is 3, and I decided not to modify it (even after I told her I would. Sorry Michelle! I got lazy) but it should be pretty easy to make this work for a kid any age, I think.

---

ALL ABOUT ME

Hi! My name is XX and I’m 3. I love to play cars and trains and to ride my bike and run and jump and climb.

I’m excited about school, but my mommy is worried that some things will be hard for me. I can do everything the same as other kids; there are just times when I might need you to teach me a little differently than you’re used to.

WHY I’M A LITTLE BIT DIFFERENT

My doctors told my Mommy that I’m really smart and can figure things out like a bigger kid. But, my brain works a little different so sometimes it might look like I don’t understand something. But if you take a second to help me see it my way, you’ll be surprised how fast I learn!

My Mommy and my doctors use these big words when they talk about me.

• High Functioning Autism
• Sensory Processing Disorder
• Speech & Language Processing Disorder
• Auditory Processing Disorder

AUTISM

• My brain gets stuck on things and I can’t help it. I do best with verbal reminders a few minutes before the class moves onto the next activity, it helps me get unstuck and transition smoothly.
• It is really hard for me to understand what other people are thinking and feeling based on their face or tone of voice. It’s not that I don’t care, it’s that part of my brain doesn’t work the same as yours. I really like making you happy. If you are happy or frustrated with something I did, I won’t know unless you use words to tell me.
• I really like to play with other kids, but it is hard for me to know if they like how I am playing. It helps me a lot if you tell me gently how to play nice and be a good friend.
• I do best with routines. I can handle changes to what I expect (like fire drills) if you talk about it in advance.
• I take your words literally – sarcasm, jokes that are plays on words and metaphors are very confusing.

SENSORY PROCESSING

• My eight senses (did you know there are eight?!) don’t work the same as yours. Some days I am more sensitive to everything, and some days I feel like I can’t get enough of everything.
• Noises that sound normal to you (like a toilet flushing) may be painful for me. If you know there will be a loud noise, it helps if you remind me to cover my ears.
• Being touched (especially on the head) can really overload my senses and make it hard for me to stay calm. Sometimes it’s hard for me to sit close to other people.
• A face can give more sensory information than I can process all at once – I can’t always look at you AND understand what you are saying. Sometimes I need to look down so I can hear you.
• Did you know learning to write is related to your senses? I have to work extra hard to hold a crayon and make it do what I need it to. Sometimes I press too hard, and sometimes I can’t press it hard enough.

LANGUAGE PROCESSING

• It can be hard for me to say something even when I know all the words – sometimes I need you to be a little bit patient while I work on getting my brain to make the muscles in my mouth work right.
• It is very hard for me to answer open-ended questions. I do much better when I can make a choice.
• I often say things backwards (I ate the ice cream because I am cold).

AUDITORY PROCESSING

• My ears work fine, but sometimes the connection between my ears and brain can be slow (like waiting for a web page to load) or kind of staticky (like a radio station that won’t come in right).
• There can be a delay between when my ear hears you talk and my brain understands the words that can make it look like I’m not listening. If you touch me on the arm, I will know you need my attention.
• Sometimes my brain hears a different word than you say. Not very often, but if you notice please tell my Mommy.
• It can be hard for me to understand when you talk fast and give lots of instructions. I do really well if you show me how to do something after you tell me. My eyes understand faster than my ears.

---

Some good links (thanks for my FB friends for sending me to these places; I didn't find them on my own!):

Ten Things Your Student With Autism Wishes You Knew by Ellen Nothbohm

Back to School, a post by Diary of a Mom that has links at the bottom.

Tip Sheets for Teaching Children with Autism Spectrum Disorder by Sue Larkey


Questions? I'm happy to tell you more about what I know. jillsmo at gmail.com

---

About Special Education

I originally wrote this about 2 years ago, within the first week that I started blogging, but nobody read a word I wrote back then, except for my husband, my mother, and 2 friends. How about a little exposure, right??

When Child 1 was in preschool and we were preparing for Kindergarten, I saw a post on a local mailing list written by a mom with a kid in Special Ed (SPED) asking what parents thought about the district's Inclusion Program, and worrying how other parents felt about it, etc. The majority of responses were positive, parents, in general, are able to appreciate the differentness in everybody and had good things to say about their experiences. Some responses were not so positive, though. Parents (nobody had the balls to sign their name, of course) said that SPED kids "stole" resources away from General Ed (GenEd) kids; in today's tough times, with budgets so tight, it "wasn't fair" that their kids were losing teacher time and resources because the district thought it was politically correct to put the SPED kids in the with the rest of them. Seriously. Someone said that.

So, Child 1, and myself, enter public elementary school knowing that people feel this way. (Okay, Child 1 doesn't know and even if he did he probably wouldn't care, it was just me that knew this) and at first I was afraid to even mention that he had a disability, but as the years have gone on I realize that there's a pretty good crew of folks at the school and I haven't much encountered that attitude.  PHEW!

However, here's what I've learned about SPED and GenEd resources at our district that I wish I could have told myself, and those jackass other parents from the mailing list 5 years ago.

- Our district was apparently the birth place of Special Education; there was once a fantastic program, designed by parents, teachers and administrators, that actually fully included SPED kids and provided them the support they needed to get them an education. Awesome!

- SPED is federally funded. Services are paid for by a separate budget within the district, money which comes from the federal government, authorized by the Individuals with Disabilities Education Act of 2004.

- Federal law (IDEA and NCLB) requires that districts adopt a "Response to Intervention" program which tries to identify kids who are struggling and get them extra help before they fall too far behind and instead of a referral to SPED. This is actually a good idea, don't you think? I think so. Not being sarcastic, I think that's really a good idea.

- The Department of Education has allowed school districts to use 15% of IDEA funding for early intervention services in regular education

Over time, though, our district has been moving away from the great inclusion program in favor of the RTI program which attempts to address the needs of all kids. They've been doing this, though, by taking already strapped SPED staff and basically just giving them extra work with extra kids. After all, they can use 15% of their IDEA budget to pay for their RTI, so why not just tack on some extra duties to the Resource staff already there? So what happened is that the Inclusion Coordinator became the Resource Coordinator, and while on paper the district said "you're 85% SPED and 15% GenEd" the reality is that she no longer has 30 or so kids with IEPs on her caseload, she now has every kid at the school on her caseload, about 400. Because every kid at the school is entitled to an "intervention" if they need it, or at least a referral, to the Resource Coordinator. (I'm not sure if that's her actual title, I don't remember)

My kid's disability manifests itself in the classroom by him sitting quietly, softly talking to himself, looking beautiful and doing an excellent job pretending to be paying attention, but not learning a single thing unless there's somebody standing over his shoulder the whole time. He has an aide (Federally funded!!) and there are a host of GenEd kids who are a huge disruption to the classroom. These kids don't have IEPs and I have no idea if they need one or not, but as they act out, the teacher, and my son's aide, are forced to turn their attention to those kids, while mine sits quietly, looking beautiful and not learning. Those GenEd kids, who don't have a 504 or an IEP, get referred to the Resource Coordinator as head of the Intervention team, because they're falling behind. Because the Resource Coordinator is now so strapped for time, I have a great deal of trouble even getting an IEP meeting scheduled. It's not her fault, she's doing the best she can, she just has way too much to do.

So, the bottom line, and I say this to the myself of five years ago, or anybody else who doesn't know any better, or anybody with a child in SPED entering a public school: At our district, it is actually the General Ed kids who steal resources and teacher time away from the Special Ed kids. In today's tough times, when budgets are so tight, it's really not fair that a federally funded program should be drained away by kids who don't qualify for it. Oh, yeah, that's right, I went there.

---

IEP post. Um... snark?

Holy shit I'm doing a meme! First of all, I have to apologize for the people who have actually tagged me in this, because I can't for the life of me remember who you are. I'm really sorry about that, but if you tell me I will definitely edit this post to include a link to you. In the meantime, though, for some reason I was able to remember that this meme was created by Karen at Solodialogue, who definitely didn't tag me, because she's afraid of me for some reason. I think. I don't remember. Anyway, that isn't going to stop me from participating, because that's just the way I roll....

So, here's the deal with this, according to Karen:

Each of us has loads to offer on the battlefield but what tools and services are we really all fighting for? Do we know what is available? By the way, who is paying for those special things?

So, simply put, as I tag you, and hoping that you are willing to share, there are only three things I’m looking for answers to in this meme:

1. A list of tools (special chairs, iPad, visual schedules, gums, chewlery, squishees, headphones, whatever devices help focus and sensory issues);
2. Services (Speech Therapy, Physical Therapy, Occupational Therapy, ABA, TEACCH, Special Ed teaching rooms, aides during class, tutors, etc.) and how many hours per week of each your child receives;
3. Your opinions of the effectiveness of (1) and (2) above.

I know. I know. Every child with a special need is different and requires different accommodations. Beyond that, I think we will find common ground. We may find that despite the emphasis on the differences, the school districts may be offering the same stuff to everyone. Who knows until we share?

The goal is that the next time any of us is faced with an upcoming IEP we can peruse our friends’ lists and see what may be useful to our own child.

Sounds good to me! So... here we go....

1. Nothing. Nada. There are no tools. The closest we get is that he gets to use math manipulatives. This is because we haven't had a good OT in a few years, but at our recent IEP meeting there was somebody there who seemed to actually know what she was doing, and was able to use the term "sensory diet" in a way that didn't include the cafeteria, so I'm hopeful that she may come up with some ideas. On the other hand, he'll just stim on fidgets all day long, anyway, and really what he needs is to get up and run back and forth in the hallway a few times in order to get his focus. I was going to say "get his focus back" but he practically never has focus, anyway; but I digress....

2. Services! I will list them below:

- Specialized academic instruction: 225 minutes/week (Push in and/or pull out academic support)
- Intensive Individual Services: 1200 minutes/week (IA support during academic activities and specials)
- Language and speech: 90 minutes/week (Push in and pull out as needed to total 90 minutes weekly)
- Occupational Therapy: 30 minutes/week (push into classroom or pull out, as needed)
- Adapted Physical Education: 30 minutes/week
- There are about 3 pages dedicated to testing accommodations, but I'll just tell you the good part, because the rest of it isn't important, I think: When unfocused or seems stressed, discontinue testing and work on core curriculum (This is the first time we've had this, I can't WAIT to see how this goes, because he is ALWAYS unfocused! HAHAHAHA!)

3. I think that a few years ago when he had an awesome SLP/OT (ONE person doing all awesome things. We were so lucky) he benefited a lot from the brushing and the swinging that she would do, but that hasn't been happening the past few years and I'm not really sure it would make a difference, anyway. But at our last meeting we did discuss the need for him to get up every 30 minutes or so and just run back and forth to get his physical and mental energy out, which is what they're referring to about the OT, which is push in or pull out "as needed."

As for the rest of it, like I said, he's always unfocused, and without an IA hanging over his shoulder he will never listen to the teacher or get any work done, so unless he's actually getting his "specialized academic instruction" I'm not sure he's actually learning anything, anyway.

We also have a tutor, who is not mentioned in the IEP, and whom I pay for out of pocket. I've been fighting the district to pay for tutoring forfuckingEVER, but they just won't do it. I've talked about it here before. Mostly it's just so that I don't have to do homework with him, because I simply cannot. Our awesome tutor is not only has a K-6 credential, she is an autism specialist and works as a resource teacher in another district. She works for me for shit pay because she's a single parent and needs the extra money. Oh, I'm going to give her a raise, by the way, because she was at our IEP and was AWESOME.

I think I'm getting off track. Another thing I want to mention, just because I think it's so cool, is that it also says this in our IEP: "Send home homework, but family decides what Child 1 will do for homework. If an alternative assignment worked on for homework, the assignment will be turned in with adult signature." So, basically, fuck your test prep! YES!!!!! I only wish I could get the same for Child 2.

Oh, and inspired by Top Ten Most Ridiculous Comments Heard at an IEP Meeting, here's something that was said at our meeting last week. Spoken by our district representative, who is always saying stupid things like "he'll be taking tests his whole life," in a discussion about whether or not teaching an autistic kid (with both significant language processing issues and some kind of math phobia) math word problems was wise or not, she said "word problems are a part of life." Um... hello? Autism? Word problems? Seriously???

Okay! So, I hope I did justice to this meme and that Karen will be proud and not scared of me. I will now also tag some people, and I've chosen the mom bloggers who were the first friends I made when I started blogging and whom I have somewhat fallen out of touch with as the years have gone on.

Also ..... Lynn knows why.....

• Lynn at Autism Army Mom
• Cheryl at Little Bit Quirky
• Dani at I'm Just That Way and That's Just Me
• Jessica at Four Plus an Angel
• Jennie at Anybody Want a Peanut?

---

Take your test prep and shove it

To the Principal and administration of my son's school:

As you know, my autistic son is mainstreamed in 4th grade at your school. While he is quite verbal and sweet-natured, he has a number of issues that affect how he learns within a classroom. In particular, he has difficulty focusing on what the teacher is saying, despite having an aide most of the time.

I understand the necessity of homework in this case; to let him have extra practice on the material he works on during the day. However, it's been rather obvious to me that the quality of his homework has changed significantly since the start of 4th grade. I have noticed a good deal of emphasis being placed on preparing him for "The Test:" four page math quizzes, "Response to Literature" story matrices, a constant flow of fables to "deconstruct," etc.

As my son is autistic, his best method of learning is by rote, and for his "least restrictive environment," he needs repetition for the material to sink in. By making him spend so much time preparing for The Test, you're doing nothing but taking away from the time that could be spend learning his basic academic skills. Please note that I purposely did not write this letter to his teacher, as I fully understand that her hands are tied when it comes to this issue, and have no desire to take her to task over it. Making my son do test prep homework is about our school's AYP, and nothing more.

The point in him even going to school is so that he can learn, not so that he can pass a state test; right now he's in 4th grade and reads at a 1st grade level. He doesn't need to practice for the state 4th grade writing exam, he needs to be able to read and write. He doesn't need to fill in the numbers on a Coordinate Grid, he needs to know how to add and subtract. It doesn't matter how he scores on your test. It doesn't matter about whatever political or economical impact his score or participation may or may not have on your district budget. What matters is that he learns, and by distracting him from his learning with meaningless test prep, you are failing to do your job.

That said, I look forward to squaring off with you over the table at our next IEP meeting in February, because this will be all we talk about.

Sincerely,

jillsmo
Mom to Child 1, in 4th grade

---

"My child needs an IEP."

Disclaimer!!!! I am not a lawyer. This is not legal advice. Please don't use anything I say here as proof of anything whatsoever. This is my opinion, based on my experience. This is not legal advice. Did I mention yet that I am not a lawyer? It's true. I'm not. Also this isn't legal advice. I may link to legal looking things, but don't read anything more into that. Because I'm not a lawyer. And this isn't legal advice.

---

This post is written for parents who have children with an actual, documented diagnosis of a disability that is preventing their children from doing well in school. This is not intended for those kids who are falling a little behind, or who are struggling for other reasons, I'm talking about kids who qualify for an IEP under The Individuals with Disabilities Education Act (IDEA).

Before you go on, read my disclaimer at the top again. Okay! We're good!

I spend a lot of time talking to people who have children with IEPs or children who have a diagnosis of something and need extra help at school because of it. I talk to people online, in real life, on the phone, via email, whatever. There is one commonality in the stories of practically every single person I talk to and I'll be honest, I'm getting really sick of it.

So. Parents. Here's something you should know about your school and your school district: Your child may be entitled to services under IDEA but it is the intention of your district to do their best to make sure you don't find out about that. They don't want you to know your rights because if you did, you would then be empowered and you would use your rights to get services for your child. This costs the district money and they don't have very much of it as it is and they certainly don't want to give what they do have to your kid. So they will lie, and they will avoid you, and they will feed you complete crap so that you walk away disappointed... as long as you walk away.

If your child has a diagnoses, or even if you suspect that he does (I'm not being sexist but I'm going to use the masculine pronoun here because it's easier than saying "he or she" every time) and he is struggling in school as a result, the first person you might want to talk to would be the principal at your school. Except the principal at your school is really just an extension of the district at large and they have (for the most part) been instructed to tell you whatever it takes to get you to stop asking about it.

Here are a few things I've heard parents tell me that they've heard from their principals:

1. We don't give IEPs for (whatever your diagnosis is)
2. You can't get an IEP until your child is X number of years behind academically
3. The district isn't giving out IEPs right now, check again next year
4. We're not giving out IEPs because we've run out of IEP forms
5. I'm sorry, this isn't the kind of school district that teaches children

(I made those last 2 up.) (NOT LEGAL ADVICE.)

All of that is complete horseshit, of course. If your child has a documented disability that impairs his ability to learn in school along with his peers, he qualifies for an IEP. And the principal of your school has absolutely no jurisdiction or authority to determine any of this, despite what they might tell you. There is a special education department located inside the district offices, with a special education director whose job it is specifically to field your questions. That's the person you want to talk to, not your school's principal. Unless your district is so small that your school's principal plays a dual role of both school principal and district SPED director, don't go to your principal for an IEP.

The Individuals with Disabilities Education Act lists 13 categories under which a student can qualify for special education services. You can make pretty much any diagnosis (yes, including ADHD) fit into one of these:

1. Autism
2. Deaf-Blindness
3. Deafness
4. Hearing Impairment
5. Mental Retardation
6. Multiple Disabilities
7. Orthopedic Impairment
8. Other Health Impairment
9. Serious Emotional Disturbance
10. Specific Learning Disability
11. Speech or Language Impairment
12. Traumatic Brain Injury
13. Visual impairment, including Blindness

I'm sick to death of parents being flat out lied to or just given misinformation. There are laws, they are federal law and they are clear. You have the right to have your child evaluated, and if they don't want to, they need to give you a damn good reason that doesn't involve money. There are timelines they are required to follow. They don't get to stall, they don't get to hem and haw, they don't get to cancel meetings and hang up on you and not call you back: they do these things because they don't want to have to spend any money on your child. This is obviously not what is in the best interest of your child. This might piss some people off but it's not your problem that they can't afford it or don't want to spend money on your kid. It's not your problem. IDEA says so.

Parents: know your rights. They are online and they are easy to find. There are people in your district or your state who exist specifically just to help you find out. If you're a good internet researcher, I suggest you start at WrightsLaw. They will have everything you need to know about what to do.

Put all your communication with the school district in writing (emails don't count). Never make a phone call and then take the words you were given as some kind of evidence of anything, because they probably will deny it later. Having things in writing will document your timeline and you will be able to prove, undeniably, that in August 2011 you requested an evaluation. This may be helpful in April 2012 when you're in front of a judge or a mediator still trying to get some help for your kid.

So, if you're in the process, or you're starting the process, or you know somebody who is, don't necessarily believe what you're told because it might not be true. And if you need any help, contact me; I'm a good resource, no matter where you live, and I love sticking it to the lying school districts who lie.

Except I'm not a lawyer. And none of this was legal advice.

---

Edit: Sometimes I see in my site stats that people land on this page because of a google search. PLEASE feel free to contact me if there's anything I can answer for you or help you with!!! jillsmo@gmail.com

Edit2: This is a really good article: Top Ten Most Ridiculous Comments Heard at an IEP Meeting

---

Awesome video of awesomeness

You know, this is supposed to be a satire, but to those of you who have kids who don't have special needs, I'm afraid that this video is scarily accurate. And to those of you who DO have kids with special needs, I hope you find this as hilarious as I do.

---

jillsmo goes to Center Street

So, I'm part of this group of parents who have kids in Special Ed at our district; okay, I guess you can say I lead it, but I didn't create it, it's been around for years, I just took over when somebody moved to another state. Anyway, as coordinator, I get emails and phone calls from people all over the place with a variety of different needs and questions about services at our district.

Last week I got an email from a district employee who had specific concerns that kids with IEPs in the district aren't being serviced properly (I'm going to be intentionally vague here, for reasons that will soon reveal themselves). I told her I would look into it, and I did. I talked to some people, I put out a few emails, I started learning some stuff.

The first thing I learned is that there is, in fact, a problem at our district, and kids are not being serviced properly, among other things. This happens because parents don't always know their rights, and the district is happy to take advantage of that by not informing them.  I've heard a bunch of stories today and I'm pretty pissed off about it, and I know there are probably more stories still to come. It reminds me of me at my first IEP meeting, pregnant with #2, totally clueless about what was going on. I had a nonverbal 3 year old with a formal diagnosis of autism, they were offering me 15 hours/week of a special needs only classroom, speech therapy 30 minutes/week and I thought I did pretty well. What did I know? Nobody told me otherwise.

Well, guess what, district? It's not okay to lie to parents about what their rights are in the hopes that they'll just accept what you say because they don't know any better. I know you've pretty much always been successful with that approach, but it's still not fucking okay, and if I have to personally call every parent of a kid with an IEP and inform them of their rights under IDEA 2004, I will do so. (Okay, honestly, I would probably get somebody to help me with this part. I mean, let's not go crazy).

The one thing I heard from every single person, however, is "I am X and and this is my problem but please don't mention my name because I don't want to jeopardize (either my kid or my job) if the district hears I've been talking to you." Everybody is just scared shitless of what kind of wrath the district will bring on them, just for talking. Well, guess what else, district? I'm not scared of you. My son has autism, and a well documented history of needing 1:1 support, are you going to try to deny him services because of something that I do? Fucking bring it on. I dare you.

I don't know yet what I'm going to do, but I'm going to do something. We'll see what happens....

---