Friday, February 22, 2013

12 steps to surviving the IEP with your sanity intact

Alex's IEP meeting is in about a month. That means I'm paying more attention to the posts bloggers are writing concerning their feelings/fears/experiences with the IEP meetings. I see a lot of anxiety. and it seems the anxiety is not always from their own experiences since a lot of them have younger children just starting out, but from others (like me) speaking about their horrific experiences. Sharing the negative is necessary. We need to know we are not alone, you need to know that the negative is there and be prepared to fight. You need to know that there is a very real possibility that things are going to go badly and that when they do go badly, you don't just take it, you use what's yours to use to fix it, to get your child the services that they are entitled to under IDEA and to know how to go about it. but that's not a guarantee it will go badly. It could go smoothly and you leave there feeling like you own the world. You need to know that it's not all negative. These meetings are hard, no doubt about that, but there are ways to make it easier. It's not always us vs them, we are a team and we have to work together to act like a team.

1. Trust your team. at least, until you are shown that they cannot be trusted. Even then, it's rarely the entire team that can't be trusted. There is most always someone there you can look to for help. The teacher and paras spend 8 hours/day with your child, 5 days/week. They start looking at your child as one of theirs. The therapists don't always change every year. Some of them develop a long term relationship with your child. Some of them care. Some of them see more than just and IEP when they look at your child. Find out which ones.

2. Talk to them beforehand. Tell them what you want and ask what they think. This isn't really working for me this year because they seem to be playing their cards close to their chest but I'm trying anyway. I have told them what I want with minimal response, I'll see how that goes at the meeting. Spend as much time as you can at school to see what he can do and what he can't. Sometimes... I know. Alex won't let me in his school either. But, if you can, it would be a valuable experience.

3. Know your rights, know your child's rights. You have them.
A quick summary of IDEA.
Part B of IDEA.

4. Know the information you already have going in. If you are updating an IEP, know what's already there. Study it like you are studying for the most important test of your life. If you do not have a current IEP and are just starting out, The Special Education Advisor is a wonderful place to get all of the information you need. They answer the question "What is an IEP?", they offer an IEP Success Kit, and they have a facebook page where you can ask questions about just about anything school related.

5. Make notes before you go in. If you have questions, if you have concerns, if there are goals you want to work on, write them down before you go in because once the meeting starts, you won't remember a thing.

6. Have a list of strengths ready. Preparing for an IEP, you spend so much time focusing on what weaknesses need to be addressed, you come up blank when they ask you for strengths because you didn't study for that question! Then you get tripped up and the rest of what you studied is gone. Take a picture of your child with you to help you focus on who you are working for.

7. Relax. Spoil the heck out of yourself. The day and night before the IEP meeting, do whatever you do to relax. Take a long bath, paint your nails, watch a movie, have a glass of wine. Walk, work out, whatever, do something with your excess energy so you can be calm. Do what you can to get a full night's sleep. Oh! Hey, check this out- NightFood.

8. Don't dress to impress. Don't go in feeling like you are playing dress-up or going clubbing. Dress for confidence in your competence. Wear what makes you feel sure of yourself. If it's jeans, a hoody and a pair of awesome boots, go for it. If you are more a dress and drool worthy heels type of gal, that's cool too. But dress for yourself, not the image you think they want to see.

9. Eat before you go. I know your stomach is all tied up in knots or you have bullfrogs jumping around but for the love of Pete, EAT! Trust me, no matter how yucky you feel, your stomach will start growling in the middle of the meeting- distracting. and embarrassing. Plus skipping meals is a very bad idea. And, yes, this one is a whole lot of the pot calling the kettle black because... who has time for food!? There's no time for breakfast or lunch, I'll just eat at supper and it'll be fine. "Skipping meals leads to poor cognitive functioning, including loss of memory, concentration, the ability to learn, hand-eye coordination and catching mistakes.” Yeah, you need all the cognitive functioning you have today. At least grab a muffin to go with your coffee on the way out the door.

10. Take someone with you. Yes, I know. million other parents running around and not one of them can go with me, either. BUT, there are other people. The social worker at Alex's school said she can go with me this year. I came clean on my ADHD, she understands my trouble and explained how she could help me in the meeting. I feel so much better about this just knowing someone will be there for me, someone I trust. If no one else, take an advocate. or a neighbor. or just grab some stranger off the street (with their permission, of course. you don't want that mess) but don't go alone. You would feel a lot better if you at least looked like you had someone in your corner.

11. Ask questions. Make sure you understand what's being said and why. If the person you brought with you doesn't know what's going on, make sure to explain so that when you leave, they know exactly what happened. If they know more than you do, ask them to explain to you. I say this because in slowing it down to explain, you are more able to take it in and process it. It's the difference in standing in the middle of the highway with cars zipping by and standing in the middle of the highway directing traffic. Take notes while you are there. Once you leave, there's a good chance you won't remember a thing.

12. Do. not. ever. sign the IEP on the spot. I've heard that preached and heard that preached and waved it off with a "pfft, girl, you crazy." but it's serious, man. It doesn't matter if you agree to it or not. I learned this lesson last year when the meeting sounded great and they were all professional and I got the one thing I asked for and I was stuck on feeling like a dumbass over AFO's because I listened to the doctor instead of a physical therapist and my phone kept ringing and the clock kept ticking.... because it wasn't until later I found out most of his goals were "missing". Take it home, read it over when you can concentrate, sign it if you want to or make notes on what you want to change and take it back. You have time.

For those of you who have been around for a while, what would you add to the list?
Those of you new to this, what would you like to know?


  1. can you record it to go over later?

    1. That depends on where you are. In Missouri, yes. But that feels, to me, like a breach of trust.

  2. I am going to print and post this on my desk to make sure I remember what parents needs to know before entering these meetings. It is not easy being on both sides of the table but I hope I can do justice to the kids from both sides. Well said!

  3. My experience with IEP meetings from his first school was pure hell.....I wish I had known all of you then :) New school (cyber school) now, that went smoothly. They seemed to care more for a child they had never met, than the school who KNEW him cared..... Still I get nervous when I think about the meetings as I am socially awkward and always afraid to come off sounding uneducated. No matter how much I prep I still feel I am a blundering idiot, lol....anyway great post, and I think great advice for other parents :)

    1. Yes! I know exactly what you mean about the awkwardness. Thank you, Courtney.

  4. Great advice! I wish I had been more prepared for IEP's when my son was little. To be honest, for most of the years kindergarten thru at least 3rd grade I didn't really know what I was doing or what an IEP was! I just appreciated that the school felt something needed to be done for my son who hadn't been diagnosed with Aspergers or ADD yet. I guess being clueless "saved" me on feeling stressed out about it. Not recommended! In all the years of IEP's I took someone with me just twice. The rest I was by myself. The biggest thing that helped me all those years was always having at least one person at the schools every year that I developed a relationship with that I liked and who liked me. They would go out of their way to help me get what I wanted for my son or guided me in the right direction. Somebody as clueless as I was needed that.

  5. I have actually taught some of those points with some of my patients' families. My biggest one is to know the rights of the child. Another additional piece of advice that I have given (and used myself) is to write down what weaknesses you want to see an improvement on, what strengths your child has, and what goals YOU want and a reasonable time frame for them to be completed on. Being a nursing student, I organize mine similar to a "care map" with problem, intervention, goal time, and times for evaluation. This helps keep you organized and feeling prepared. Often, when the parent has a plan, the team will meet it or at least work towards it. In my experience, both personal and professional, the parent is the best authority!

  6. When I have an IEP I bring the big guns. I have an advocate, I record the sessions, I have reports from independents, I being work we do at home with the teaching methods I use vs the public school system.
    They can only work with the kid that shows up at school. With 30+ other kids in class my smart, yet, very sensory kid is already at 50% when he gets to school, then add those kids and the teacher and the NOISY visuals of the classroom and blammo - 100% off the wall bonkers.
    This is who they see, this is who they work with, this is who the goals in the IEP deal with, NOT the kids I see at home.
    The teacher has 30+ kids in the class - you're telling me that she pays attention to my kid 7 hours a day? No way.
    The supports like Language arts, speech, OT and APE see him less than that.
    I doubt he'd need all those supports if the class sizes were smaller or the material more engaging - but she's got standards to teach to.
    So when I go to the IEP (which is usually 3, 2 hour meetings,for me)- I'm packing (not literally of course - I'm a pacifist hippie).
    As a mom of an autistic child with sensory processing disorder, apraxia and some sort of something that appears to be undiagnosed palsey - I have to know all of the same language the SLP, OT, PT, and the educational standards for the grade. This is why I bring an advocate, after about an hour I'm tired of talking, listening and start getting angry and emotional, she takes over for me.
    I need it.
    So if you can't handle your IEPs, like me, and it frustrates the crap out of you, you might need an advocate. They can be extremely helpful.

    1. Sorry for the typo - bring not being on the work from home.

    2. Thank you, Allison. I forget sometimes that mine is different because he's never been in a class with 30+ kids. Alex goes to a special school and has about 8 kids in his class and several adults helping them, even in the regular elementary he was always in a special class. When I look at is as being my Goofy one who is in a regular kindergarten class, I totally see what you are saying.

    3. It's very hard when they are "in the middle". They can't go in the smaller classes because they aren't "severe" enough. They don't fit in general ed either because they "have behaviors" is a challenge. When we had a SCIA (aid), the other kids bullied him too much so he wanted her to go away. He's so aware but can't control makes it so tough. We do go to therapy with children with many levels of Autism, and I know where you are coming from. I think you are so wonderful, brave and I'm really enjoying your blog!

  7. Thank you. We have done IEPs for some years now always good to review prep steps and improve on them. Thanks for sharing!