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My name is Emily. I'm a mom, and an Aspie. I have two Aspie sons. One is 20. One is 19. I am a retired lawyer who had to hire a lawyer to sue my school district because of what happened with my son. Right off the bat I want to say that I would never have done that by myself. I think you need to have a professional. If you're living in a school district that doesn't want to work with you, if you find yourself at a meeting and you're confused, bring in a professional.
(Note: This is an excerpt from our book "Navigating The System: Big Mistakes & New Perspectives". It is also the sole experience of Emily, who is a retired lawyer. Please consult with a lawyer, as this is only what worked in her case. Laws change and are different in different locations.)
We've had a very long 20 years for my son Michael, also for my son Adam, who was the sibling who had to deal with this. So, Michael was originally a very happy, brilliant child, and I thought he was perfect, like we all think our kids are perfect. Then we learned there's no such thing as perfect. We're all perfectly imperfect. One of the first things we noticed with Michael was he had some sensory issues. Then we noticed learning disabilities, including dysgraphia, which is difficulty with the process of writing. He was diagnosed with Aspergers at the age of 9.
At that time, we were in a school district that they said, "All our kids are special, but we're going to send your child to another school." I said, "What are you talking about?", and they said, "Well, you know, all our kids are special, so we're going to send him to a special school for his needs". It occurred to me that what they were really saying was, "We don't want kids with learning disabilities in our school."
We actually decided to move, because that was the only way to handle that situation, because they would have sent him elsewhere. We would have had to sue the district, and we didn't want to do that because we felt like, "OK, we're going to move. This will be better."
So, we ended up in a new school district with appropriate services in hand. My son had his IEP and all the accommodations and all the services that we thought he needed, that I had fought for in my prior school district. It had not been an easy road to get those services. One of the accommodations on his IEP was Assistive Technology, which meant the right to use a laptop instead of using a pencil to write, and in those days, they didn't give out Chromebooks or laptops or iPads unless it was an accommodation on your IEP. This was 2008.
So, on the first day of school, my son goes into his fourth grade classroom, and the teacher says to him, "I need you to write a paragraph." And Michael says, "I can't. I have dysgraphia." (I was so proud that my son could advocate). And the teacher said, "You have to write anyway." And Michael said, "But I can't write. I have dysgraphia." And she wouldn't let him use his laptop. He explained that it's on his IEP, and he has all these services and accommodations, and he's allowed to use his laptop.
And she said, "You know what? You go take a walk." And he said, "What do you mean?" And she said, "Well, if you're not going to write, you're being lazy." And my son got very frustrated. At that time, he was very behavioral, so he threw his pencil on the floor. He did not throw it at the teacher, as she later claimed he did. He did not try to hurt the teacher, as she later claimed he did. He just, in total frustration, threw the pencil on the floor.
She didn't know my son, and she didn't know me, and she knew nothing about him and she just made this assumption that he did not want to write. She did not understand that he could not write. She obviously didn't know the law, either.
It's against the law where I live to deny a child an IEP service or an accommodation. So, what happened was they brought him to an illegal timeout room. There are legal timeout rooms in New York and in many states across the country, but there are also illegal timeout rooms. The idea is that they're supposed to de-escalate and to calm down in a safe environment.
What they did to my son was they stuck him in a little, tiny instrument closet, literally the size of my child and he was in there for two hours. This is an illegal time out room. He was told he couldn't come out until he did the assignment, which means he had to write. Of course, my son could not write because he has dysgraphia, so they would not let him out of the room. This went on for two hours.
Now, I knew nothing of this. At the end of the day I got a phone call, and it was the principal saying, we're suspending your son. This is the first day of fourth grade in a brand new school district that was known for how wonderful the special education was. Wonderful, right? So, I get a call. I go into panic mode. I'm in Defense Mode at this point. Because what I hear is, "Your son is not compliant. He threw a pencil at the teacher". And I said, "Wait a minute. My son, that doesn't sound like him at all. My son has never thrown anything at anybody." And all of a sudden, I get a week-long suspension for my son, which throws my family into chaos.
Both my sons went into Defense Mode but I did not understand what was going on. Remember, I did not know anything about the timeout room. I just knew about the suspension. I realized I had to have some help to fight the suspension, so I started calling advocates, and I started asking questions the same way people do right now on Asperger Experts. They say, "This just happened to my son. What do I do?"
I learned that there was a system and a process that had to be followed that I did not understand. I had to meet with the principal. I had to have a hearing. I had to do all of these legal things. Here's what I did:
I did a crash course in learning the IDEA law, which is the state and federal law that governs special education in the United States. I wanted to know every little thing there is to know about it. Because I knew that we were going into an environment that he wanted to be in, and I knew that I was going to support my son. But I also knew that it was going to be stressful for him on a daily basis to go into a classroom where teachers weren't going to do what they were supposed to do and I wanted to have the exact words to say to those teachers when they didn't do their job correctly.
The IDEA is the Individuals with Disabilities Education Act. It is different than the Americans with Disabilities Act. That's the ADA. They both can provide accommodations for students with disabilities but there's a big difference between the IDEA and the ADA. The IDEA is for any student that needs special education or individualized education services. You get an IEP through the IDEA and with an IEP (an Individualized Education Plan), you get a customized program for your child to meet his or her special education needs. It's unique to your child. Under an IEP your child can receive accommodations such as extra time on a test, modifications such as shortening assignments and services such as Occupational Therapy (OT), Reading Services, Assistive Technology (use of a laptop) or Speech.
A 504 Accommodation Plan is good. It can provide your child with accommodations, but what it can't do is provide modifications or certain special education services and it cannot protect your child legally. It doesn't give you the right, for example, to sue the district for a "Free And Appropriate Education". That's what a FAPE is. And that is how I was able to have my son moved into an appropriate therapeutic school to receive his appropriate special education services. Also, a 504 doesn't give you the right to have legal hearings, and it doesn't give you the right to have evaluations or written progress reports or meetings every single year to discuss your child’s special education services. With a 504, your school district can say, "You can have these accommodations on your 504, but we'll meet in three years from now." And they don't give you the same protections that you have on an IEP.
An IEP is also a legal document. It's a contract between you and the school that they're going to provide the special education services that are determined to be necessary for your child so that they can have an appropriate education.
Again, I want to emphasize that if your child is in a situation where things are going wrong at school, and you're getting notes from the teacher about behavior or compliance, or there is a suspension from the school, or your child comes home in a crisis and you don't know what to do, what you really need to do at that point in time is gather the documentation that you have so that you can speak to a professional and take the next steps to protect your child.
Many of our kids by the time they reach school age, have some sort of diagnosis, or they've been evaluated for Autism or learning disabilities. So the first thing to do if you are seeing things go wrong at school is to gather your paperwork together and talk to an advocate or an attorney.
Because every school district in the country is different. Every state in the country applies the law slightly differently. And, there is a federal level IDEA, and there's a state level IDEA. The federal level is very broad. And then the states kind of narrow it down. So, your specific laws where you live are different than my laws in New York. You have to know your own state law. Your attorney will know it, and your advocate will know it. And by knowing the laws and how they apply to your child you can get your child the special education services and accommodations and modifications that your child needs to succeed. There are very few schools that will do all of this automatically. So it is important to understand the system and learn how to navigate it.
Throughout this journey, I came across many questions, so I thought I would answer them here for you. It's important that you consult with a qualified lawyer because, again, this is just what worked for me in the state of New York in 2008. With that being said, here's the answers to common questions I came across:
In order to start the process for special education, you must first get an initial evaluation. So, if your child is having difficulty at school or if you suspect a learning disability, or you think your child needs support academically, physically or emotionally, there are certain evaluations you must request. This request should be in writing to the Special Education Department of your School District. I cannot emphasize enough how important it is to make all requests to your school district in writing so that you can later document all of these important conversations.
Specifically, what I would write to make the initial request is, "I suspect my child has a disability and I would like the school district to consider classification for my child under the IDEA and I would like you to do the following evaluations." I would then provide a list of evaluations that you think that your child needs.
In my son Michael’s case, I wanted them to do a psychological evaluation. I also wanted them to do an educational evaluation, and a psychological evaluation, sometimes combined and called psycho-educational evaluations. That involves specific psychological and educational tests like the Woodcock-Johnson or the WAIS, or the WJ III which can determine whether your child has Learning Disabilities. That's the alphabet soup again!
Also, in Michael’s case, I already knew he had Autism and Anxiety, but I also wanted them to do an evaluation for Occupational Therapy (OT) for his sensory issues and an Assistive Technology (AT) evaluation for his Dysgraphia (his difficulty with writing). For my younger son, Adam, he only needed and educational and a psycho-educational evaluation to determine if he had a Learning Disability. Then there's other evaluations you can request like Speech or Reading language evaluation as well, and also there are evaluations they can give if there's any issues with spelling or reading or if you suspect Dyslexia or other psychological issues such as anxiety.
There's no limitation on when to request the initial evaluations and if you do not know what to request, you can explain in your letter, the issues your child is having at school so they will know what to evaluate for. Also, you can request the initial evaluation at any time from preschool to 12th grade, and there are no limitations to how many evaluations you can request. They could be three. They could be fifteen. It doesn't matter. The important thing is to request the appropriate evaluations for the disabilities that your child has so that you can get the services, modifications and accommodations that your child needs. And you do this all in an email or a letter so that you can document the need for classification by the school district for special education services.
It is important to know that when I requested all of these initial evaluations and I put the request in writing, that actually triggers a timeline which is different in every state in which the school must evaluate your child. For you it could be 30 days, 60 days, 90 days. But the written request triggers a timeline for when the school must act, and they have to then evaluate your child. These evaluations will determine what special education your child is eligible for. But the good part is that the process is now started and the school will evaluate your child and it's all free. You don't pay for this.
The next step is having a meeting to go over the evaluations and to determine whether your child is a “student with a disability”. This is a legal term and has specific criteria which your child needs to meet. If your child is determined to be a “student with a disability”, the next question to be answered at the meeting is whether your child qualifies for a classification under the IDEA to receive special education services or any accommodations. There are multiple classifications including Autism, Learning Disability or Other Health Impaired (OHI).
The classification determines what types of services and supports your child will need. And the classification determines whether the IDEA or the ADA applies to your child. The differences in the law, as previously discussed can make a huge difference in the services offered to your child. If your child needs special education, then you want the IDEA to apply to your child. This classification process should be very simple because it is based on the evaluations that have already been completed, however, often this is not the case. If the school district says yes, your child should be classified under the IDEA, then together you will proceed to write an Individualized Education Plan (IEP) which is the legal documentation that details the special education services your child will receive.
However, if the school district says, "No, your child doesn't qualify for an IEP", sometimes they'll want to give you a 504 Accommodation Plan (504) instead because that doesn't cost them anything. It's very cheap to do a 504 because it only provides accommodations for your child and it does not require specialized individual instruction (or special education). So sometimes at the IEP meeting the school district will say, "Well, we'll give him extra time on a 504 Accommodation plan and let's see what happens." But if you have a child that needs more than just accommodations, and needs help with reading, writing, assistive technology, speech, behavioral issues, sensory issues, counseling, occupational therapy or physical therapy, your best bet is to classify your child as a student with a disability and to write an IEP to meet the individual needs of your child.
Fortunately, since I had read the IDEA law, when this happened to me and the school district wanted to provide a 504 accommodation plan instead of an IEP for Michael, I knew that I have a right to say, "No, I don't think that's enough. I disagree with your evaluations. And what I would like to do is do an IEE." These are my favorite “alphabet soup” letters!
So, just to review, in order to get an Individualized Education Plan (IEP) written for your child so that your child gets the appropriate services or modifications or accommodations that he or she needs, you first need to have your child evaluated by the school district, and then have a meeting (called the IEP meeting or in NY the Committee on Special Education or CSE meeting) with the school district. At this meeting they will determine if your child is a “student with a disability” and if he or she qualifies under the law (the IDEA) for these services, modifications or accommodations. The initial evaluations and all subsequent evaluations are free.
And when you have an evaluation by your school district, it is important to know and expect that there's a possibility that the school district will not simply give you the IEP or the services or accommodations for the things that you know your child's having trouble with for example, Speech or Occupational Therapy (OT) or help with reading or a laptop for writing or OT for a child with sensory issues or Assistive Technology (AT) for a child with Dysgraphia. And at the IEP meeting, they often say, "Oh your child's on grade level" or "Your kid's fine" and then they say that your child does not need an IEP or special education services. And you say, "Yeah, but my son is not reading so I disagree with the Committee on Special Education". In situations like those, you need to know to ask for other alphabet letters, like IEE, which is Independent Educational Evaluation.
The IEE is the most important weapon we have as parents to really have an appropriate evaluation done for our kids. An IEE is an Independent Educational Evaluation. And, as part of that evaluation, you can request a neuro-psychological evaluation which is a comprehensive psychological and educational evaluation that's done by a neuro-psychologist.
Why does that matter? Because a neuro-psychologist is a person who has degrees of degrees of degrees. Usually, they're a PhD and or they're a PsyD or they can be both a PhD and a PsyD and they have been trained to do these specialized evaluations. They are someone that really knows what they're talking about, and when they do their evaluation, it's not a few hours with a psychologist. It is days and weeks, over two or three weeks, where they'll meet with your child for a few hours each time. And it's OK to pull your child out of school to do this. The school understands your child is going through this. It's OK to miss instructional time for this.
An IEE neuro-psychological evaluation is also a good evaluation to do for your child because when you have this testing done, the neuro-psychologist will pick up everything. They'll pick up ADHD. They'll pick up learning disabilities. They'll pick up Autism and they will pick up all the issues I mentioned previously such as Dysgraphia, Dyslexia, Speech Issues or Reading Issues, and Sensory Issues. So the alphabet soup letters like IEE, and AT, OT, PT or SPD evaluation are the good letters of the alphabet that you want to learn about so that at your IEP meeting you can find answers to your questions such as “Why can’t my child complete his homework?” or “Does my child have sensory issues?” and Does my child have learning disabilities? When the IEE evaluation report comes back to the school you will have all the answers. The best part is it's free to do a neuro-psychological evaluation as part of your IEE.
Now, here's the catch: You have to know if you want to do this neuro-psychological evaluation. The school can say, "We're not going to do a neuro-psychological evaluation as part of an IEE because we don't want to pay for it and we will just do another psycho-educational evaluation." In my case, , since I read the law, I knew to turn around and say to my school, "Well, that's fine, but then you're going to have to take me to a due process hearing. And you're going to have to show how your psycho-educational evaluation of my child is accurate and addresses all the issues my son is having at school." No school district wants to do that. A), it costs a lot of money. B), they still have to do a neuro-psychological evaluation to prove that they are right and you are wrong. So, they usually cave. 9 times out of 10, they will cave and they will agree to pay for the IEE.
After that they will basically give you a list of neuropsychologists. Now, you can, if you want to, at any time in the process, do the IEE privately. But unfortunately, in New York, these evaluations can cost $6,000, $7,000. So, it's almost always better to let the school do the IEE evaluations or contract with a neuropsychologist to do the evaluation unless they are not going to use a genuine neuropsychologist. And, at any time after the initial evaluation process when you first get your IEP, if you don't think that they're doing a good job in the evaluations, you can always go ask for the IEE to get the exact information about your child that you need to get appropriate special education services.
Most likely, by the time you do an IEE, you're going to have a stack of papers from all the prior evaluations your child has completed. I highly recommend you create binders and labels for each evaluation and nice, organized folders because for the IEE and definitely by the time your child gets to the age of 20 and your kid is in college, and you still need accommodations for college, you can bring that nice binder that you have created along the way and the evaluator or the college will easily be able to review the prior evaluations and give you everything your child needs under a 504 plan. So that's a good way to prepare for the long journey ahead.
Another thing I have learned and that I often tell people is that there are certain things that the school accommodates, but only if you know to ask for them, because services and specialized instruction costs a lot of money, and the school doesn't want to pay a lot of money. An IEE is just one example of this. Unless you explicitly say, for example, "Hey, what about an IEE neuropsychological evaluation or what about home hospital (also known as “home instruction”)?" Often the school they won't mention that it is available all. But a mom was recently telling me, "As soon as I said those magic words, (“IEE”) they were like, oh, yeah. Here's the form to fill out for the evaluation. You fill it out. You give it back to us. We'll start the process."
Some of the best words you can ever say at an IEP meeting are "I'm going to consult with my advocate on that." And all of a sudden, it gets very quiet and they say, "Maybe we should be talking to this parent because this is an educated parent. They know their rights." The best thing you can do to go into any meeting, whether it's a 504 meeting or an IEP meeting, is know your rights, and if you need help to do that, bring an advocate or an attorney.
Another important part of the legal process is to know what to say if there's a problem at a meeting. For example, if a meeting's going south and it's not going well because everyone is arguing things can escalate quickly. Sometimes you find that the school district or the teachers are yelling and then you're yelling too! In that case, you can just stop the meeting and say, “You know what? I'd like to take a break because I don't think this is very productive”. We have had meetings that have lasted 3 hours. So periodically, I have asked to take breaks and this helps everyone to reset and calm down if we are arguing.
Also, in many states like New York, you are allowed to record your meeting so you can use the recordings later if there is a disagreement as to what was agreed to at the prior meeting. And again I want to emphasize that you can always bring another person to your meeting including a lawyer or an advocate as long as you provide written notice to your school district that you will be bringing this person to the meeting.
Additionally, it is very helpful to read your state law on Special Education prior to attending an IEP meeting. There are many online resources. To look at your state law just Google "special education law" and then your state, (New York state or whatever). And the IDEA law for your state will pop up. And then you can actually see what the law is in your state. If you don't understand it, the other website you want to have up at the same time to understand what your law says, is Understood.org. Because Understood.org was created by advocates. This is a wonderful resource because it explains everything about your state law in English, so it's not legalese, which is really hard to understand.
Another great website is WrightsLaw.com. Peter Wright is a wonderful man, and has basically taken everything there is to know, anything you ever wanted to know about the IDEA and special education law, and put it into a website. It's indexed and alphabetized, and you can even search within the site to come up with all the articles, definitions, explanations.
It would take hours and hours to read all of the IDEA but if you want to understand it, you can go on WrightsLaw.com and read the sections that apply to your child’s needs because everything about the IDEA, services, accommodations and modifications is covered on this website.
If I have a specific question about the specific part of the law and I'm not understanding it, I always have multiple sites up to help me. I have WrightsLaw.com up, Understood.org up, and then I have my state law up simultaneously on my computer, so that I can figure out what the answers are. Of course, if you hire an advocate or an attorney, this is their job. They will know about these resources and they will understand your state law. They will go to your meetings, help you get the right evaluations, help you write your IEP or 504 and will go over your IEPs and 504s with you and make the appropriate goals for your child. The job of the lawyer or advocate is to discuss things with you and your school district so that your child gets what they need. That's what they're paid to do.
A lawyer is really the person you want if you're in my shoes. Your kid's getting suspended. Your kid's being locked in an illegal time out room such as in an instrument closet. Your kid's being hit or physically abused in any way. Your kid's being emotionally abused. In these types of situations, you definitely need a lawyer.
But if you have a teacher who's not following the IEP, or you have an issue in a particular area such as your kid's having trouble writing or your kid's having trouble reading, or your child has a behavioral or sensory problem that is not being addressed, then an advocate can help you talk to the teacher or have an IEP meeting to make sure that your child has the right goals or the right accommodations or the right modifications or services for your child.
Also, as I mentioned above, whether you're at a 504 meeting, an IEP meeting, or any meeting with your school, you have to go through the meeting calmly and it helps to prepare in advance. My husband's an IT guy, so for each meeting we attended, he did a PowerPoint so that we had documents in front of us, and we could have conversation, and it wasn't a screaming fest.
Meetings are very stressful and once everyone starts escalating, everyone's in Defense Mode. Nobody's paying attention, and you stop listening to each other, you don't get anywhere. So, I think that's really important, no matter what type of meeting it is, whether it is just to try to understand what's going on with the teacher, or if it's a full-blown IEP or Committee on Special Education (CSE) meeting.
For example, I've had these CSE meetings where there's 35 people around the conference table, and everyone's yelling at each other because we're all New Yorkers, and we're all talking so fast that nobody's listening. I'm usually the person that says, Let's take it down a notch. Let's just listen to each other, one person at a time."
Also, always remember that as you navigate the legal system to get your child the appropriate services, modifications, and accommodations that they need, at the end of the day, you know your child best. You know in your heart if something's not going well. Because if your child comes home and they're happy, they're going to be in a good mood. They're going to smile. They're going to tell you about their day. If your child's coming home in Defense Mode, something's not right. If your child's coming home and shutting down and running into their room, something's not right. All the tools that are taught by Asperger Experts are so important for understanding your child. Once you combine that with a discussion with the school of the services, modifications and accommodations that could help your child succeed in their education, then you have everything in place.
To help your child succeed, you have to have a child that is out of Defense Mode and is ready, willing, and able to accept the responsibility of going to school. But you also have to make sure that the teachers are doing their job, and that the appropriate accommodations, modifications, and services are written into the IEP and the proper goals are written on your IEP and that all of this is actually being followed. I see this as part of my job as a parent. There is nobody else who will make sure that the teachers are providing the appropriate special education and that they are also meeting the goals that you set for your child.
So, you want to make sure that everything is in place, set up properly and actually being followed.
It would be just so nice if you could write an IEP and send your kid into school and everything went great. But I don't know anyone that's ever had that experience, unfortunately. Generally, something goes wrong. And honestly, I don't blame the teachers. My parents were teachers. I have a lot of friends that are teachers. In many states, regular education teachers do not learn much about the IDEA or what an IEP or a 504 Accommodation Plan is until they begin teaching in school, and that's when they're given a very basic training. Some states don't require any special education training at all for a regular education teacher. But even in states like New York, where they have to go through years of training and get a Master’s Degree to be a Regular Education teacher with a knowledge of special education, often, they don't really understand the IDEA.
I also see it as part of my job as a good parent, to do the research, to speak to my advocate, and to educate the teachers. So, I'm always handing them resources. I'm telling them about Asperger Experts, and handing them links to WrightsLaw.com, Understood.org and other website resources and books to help them to understand my son’s special needs. I'm always saying to the IEP team "Did you read this Asperger Experts book? Because that's really good." And it helps the teachers. It helps the teachers to help your child. So, I think that understanding the IDEA is so important so that I can share this with the people who will teach and support my child.
Remember: you have options, too. You can go through the process to get special education services for your child and then decide your child doesn't need it anymore. That's OK, too.
The lawyer in me wants everyone to know this: Don't ever, ever have a conversation with a teacher or at an IEP meeting, or any meeting that you don't document in writing. Because later, you're going to need that documentation! I think that documentation is the single most important thing you can do on your child’s journey at school to protect your child.
Document as you go from the moment you see that things are not going well or from the moment that you decide that you want to have an evaluation for special education services. And request the responses from the school district in writing (or confirm all telephone conversations by writing an email to document the conversation). You always want to know what's going on and have a record of every conversation.
And then, always remember that if you need help, hire a professional, especially if you already know you have a hostile school district, or if you wind up in a hostile environment after you have that IEP in place or after the IEE and after those evaluations are done. Do not go into IEP meetings by yourself unless you are prepared. Because even though technically you're supposed to be an equal member at the table for an IEP meeting or any meeting with a school district, the school district does not ever treat you like you're equal.
That is the process in a nutshell of how I helped my sons. I was their advocate throughout high school and I am still their advocates now, while they are in college, but I needed professional help to get my son Michael the special education services that he needed to succeed. So never be afraid to ask for professional help! Your child has rights and your child is going to be ok once you have professionals involved who know how to help your child.
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