I’ve known it was coming for awhile now.The dreaded IEP meeting.
If you aren’t familiar with the abbreviation that strikes fear in the hearts of moms like me everywhere, it stands for Individualized Education Program. It’s the game plan for educating a child who doesn’t fit the norm.
Nathan will age out of Early Intervention next week when he turns three and will simultaneously age in to the public preschool program for kids with developmental delays. We spent the past two months going to various meetings and assessments (and completing some questionnaires at home) to determine whether he qualified.
I wanted him to do well on his assessments. I wanted him to prove that he is capable of so much more than what the world assumes he can do. But on the other hand, I know he’s delayed, and I didn’t want him to do so well that he wouldn’t qualify.
It’s a tough position to be in.
I went to most (all?) of Sarah Kate’s IEP meetings alone, and since she was transitioned out of an IEP to a 504 plan, I’ve gone to those meetings alone, as well. Her delays were obvious, so I mostly knew what to expect each time. Knowing what to expect didn’t make it easy – it’s tough to see your child’s weaknesses quantified in black and white – but it did remove some of the fear.
Not so with Nathan.
While Sarah Kate’s motor delays at age three were significant, her social skills, speech and cognition were advanced, and her adaptive skills were delayed in ways that were heavily dependent on (or at least related to) her poor balance that caused her motor delays. By contrast, Nathan doesn’t have One Big Problem; his whole being is just…different.
With Sarah Kate, there was a certain sense of feeling like it was just a matter of time and hard work before she’d begin to catch up. With Nathan, I have to admit to being more of a defeatist, because every area of development is affected in some way. But oddly, those delays don’t smack me across the face every day like Sarah Kate’s One Big Problem did. Maybe that’s because I’m not around as many kids his age as I was when Sarah Kate was little, I’m not sure.
The thing is, I just didn’t want to see those numbers laid out in front of me.
It was a little stupid to go ahead with the IEP meeting on Thursday morning at 9:30. Nathan was sick, I was tired, and Mr. Andi had to get up and drive 175 miles home from a conference that morning in order to make it on time. But I’d dreaded this meeting for months and I wanted to get it over with, so we pressed on.
Although Sarah Kate wasn’t in the preschool program in this school system, the preschool is located at her former elementary school and I sorta-kinda knew the preschool teacher, Mrs. L, from the carline. She first explained the minimum eligibility qualifications (a delay two standard deviations from the mean in one area or 1.5 standard deviations from the mean in two or more areas), which was probably good information for Mr. Andi but was old news to me. Now that we were there, I just wanted to cut to the chase.
He qualified, which we already knew.
How? In communication, adaptive skills, and cognition. No real surprises, I don’t guess. We know his speech – especially his articulation – isn’t good. His adaptive skills I’ll take some of the blame for, as I neglect working on things like eating, dressing, etc., because I’m lazy, hate messes, and am sorta-kinda obsessed with the speech. Cognition? Well, that one was tricky, because I really didn’t know what to expect.
On the one hand, I know he’s no dummy. He’s clever. And sneaky. And he somehow learned all of the letters of the alphabet without us teaching them to him (I credit the LeapFrog Leaptop and Sesame Street). In fact, when reviewing the draft of the IEP, the two changes we made were to replace two of the listed goals on letters, because he’s already doing those things.
But he does have Down syndrome.
So of course we should expect him to have a cognitive delay. But there’s a nagging little voice in my head that keeps saying…
…BUT he has mosaic Down syndrome, which means that on average, that extra chromosome doesn’t have as strong of an impact.
…BUT what if the genes that combined to make Sarah Kate score as “gifted” are strong enough to balance out the negative impact of that extra chromosome, making him cognitively “average”?
…AND how accurate can a cognitive test be, anyway, for a kid with communication difficulties?
I wish I could tell you that there’s some greater life lesson to be learned from the IEP meeting, or that I could at least walk you through what to expect, how to prepare, and the like. But the truth is that our experience was uneventful and not unpleasant.
For what it’s worth it’s very challenging to measure cognition at age 3, especially when there’s a speech delay. Here’s a link to a report evaluating a range of different tests used on preschoolers to kids in elementary school. Depending how you feel about inclusion, because many districts use these scores to decided placements, it can be worth really forcing them to be clear about the kinds of tests they’re using and pushing them if there’s evidence that the evaluations aren’t acccuate.
http://www.pewtrusts.org/uploadedFiles/wwwpewtrustsorg/Reports/Pre-k_education/atkins-burnett%20final%20apper%207-3-07.pdf
Thanks, Pam! I am aware that it’s tough to measure cognition (which is only one aspect of intelligence, anyway). For now, I’m okay with the testing, because it’s necessary for him to receive services. When he reaches kindergarten, I may be singing a different tune.
Hi, don’t think I have ever commented before, but I have been reading for awhile. Thanks for sharing about you and your wonderful family. I have a little guy, Luke, a little younger than Nathan. He has DS and will be three in June, so we are starting the same process. It scares me, a lot. I realize he is behind, in everything. I have two older sons and know what he should be doing. But, I also see how smart he is, how he can find a way to get what he wants. How he figures out to communicate what he needs without verbalizing it. I know a team that tests him a couple hours will never see that part of him. And I am so on the fence about where to put him next, PPCD? regular preschool, combine both? Did you have the same struggle with that part of the decisions? or are you confident in what they offer him?
Hi, Cheryl! Thanks for commenting!
As far as how confident I am with what they offer…I’m not and won’t be until I see it in action. Not because I doubt their commitment or ability, but because it’s an imperfect system all the way around. But what I AM confident in is that they will do their best by him, which is more than some parents may be able to say. I have the benefit of having had my first child in that same school (albeit different circumstances) and have a lot of respect for the staff there.
Nathan has been attending a private program two days/week for four hours a day since last June – all typically developing children – and registration for next year was a couple of weeks ago. The public school was more than willing to work with us so that he could do both – and to let me know that in time to register him for next year, even though the IEP meeting wasn’t until last week. I’d say that’s a pretty good start.
that does sound like a good balance. I was aiming for that too. I asked my community about the PPCD, and got a lot of positive feedback. When I called the district and mentioned the split week though, they were very resistant and not sure it was allowed. I teach preschool and wanted to take him the days I’m there (different class of course).
We’ll see what happens, I guess.
Ah, a side note. I met Tim Harris this weekend at a DS conference here in Houston. Just thought you may appreciate that as much as I did. He was an awesome, inspiring speaker!
maybe because rachel has just regular old T21, i wasn’t as surprised by what they labeled her skills as or maybe i just don’t care anymore. i know that standard test do not accurately reflect what she understands or how she understands. i know that these tests are just a way for them to measure her and get her into a tidy box… because that is what school systems do. so, we went through them. they told me their “findings” and i promptly forgot it. i want her to learn, be pushed and be happy in school. what they think about her is the least of my worries as long as they are doing their best job teaching her. don’t let these things get to you. be happy he is starting this new part of his life. he is going to BLOSSOM like you never thought possible.
Well said, Maggie!
IEP’s are rough, even when they go well. Dev is 16, so we’ve been to a few… We have also lived in 4 different states, so we also know the programs are very different, and can be wildly different from school to school.
When Dev was little… preschool… we were in Florida. The only preschool program the public school offered was fully contained (no “typical” kids). Dev is our 2nd child, so we had been in a private preschool setting for her older sister that we loved… We signed Dev up! The only stated requirement was that she was potty-trained for the 3yr class and it was on a “we will see” basis. That summer we work hard to make sure she was potty-trained 🙂
We still feel it was one of the best decisions we have ever made. Yes, we had to pay but we had done that for her sister. She had a wonderful experience attending for year 3, 4 and early 5. The program was only 1/2 days 2 days a week for year 3, 3 days a week for 4’s and 5 days for the 5’s. We did speech with the public program (insurance was not so flexible…) but it was not too hard to fit in, as I was not working out side the home. She learned far more in preschool than she did in Kinder.
We have known some families that were able to enroll in both types of programs. 2 days in a private, 3 days in a public or visa-versa… I think you have some creative talent in getting your kids what you think they need 🙂
IEP’s and testing is hard, and does not ever show your child’s value or ability. Try to keep in mind, poor testing can lead to more/better services. If your child succeeds in the program they will take the program away, make your child fail, then you have to try to get the services back… Hopefully you can work WITH your IEP team, (always bring a goodie to share).
Good luck
That’s the catch-22 of the tests! Doing well = denied services, but doing poorly = doing poorly. 🙁
As I mentioned in my reply to Cheryl’s comment, the public preschool program is working with us so that Nathan will attend there two days/week and will remain at his current private preschool two days/week (we will increase it to three days/week in the fall). The preschool teacher was very happy to hear we wanted to keep in both programs, because she felt they would complement each other – he’ll get the extra help he needs in the public class but he’ll be pushed to keep up with his typical peers in the private program.
With Sarah Kate, we opted for private preschool only, for the reasons you mentioned. We were in a different school system then, but they worked with us by providing private PT and sent someone to observe her monthly in her private classroom. Our feeling back then was that she was going to have to learn to navigate the “real world” with mostly typical people, so she needed to get used to it from an early age. We feel the same way about Nathan, but we also recognize that his weaknesses must be treated differently, so we felt a two-pronged approach would be best. Our district does have an integrated program for kids with and without disabilities, but he does not currently qualify for it. It is my hope that eventually he will.
And of course we will have to institute Potty Boot Camp between now and the fall when he moves up to the 3yo class!
I’m so thankful you write about all these things, because I don’t feel so alone. My son is 3 1/2 and has been receiving speech therapy at school for a short time. At the recommendation of his PKU doctor we also had more comprehensive developmental testing done, for which we received results last week. He presented with a delay in fine motor skills, so now he has 2 developmental delays. This along with sensory issues has also prompted a recommendation for him to be tested for an Autism Spectrum Disorder. I totally identify with a statement you made in this post, that it is one thing to know these things from your own observation, but it is another thing to see it on paper. To the world around us, it is all about labels. Labels are applied to people like price stickers at a supermarket. But to us it’s not about the outside value at all; I am trying to look at it as the means to an end, as some have commented. I dread the thought of my boy actually receiving an ASD diagnosis and having this label follow him around the rest of his life. But if that’s what it takes for him to get him the best help he can possibly get, then we will just have to live with it and work hard to soften that label. As much as I educate myself about all these things, I have to educate so many in our little community so that people will understand things are not always as they seem. Everyone already has their own opinions of this label, and my intent is to teach them a new meaning and open their eyes to the reality that this is a broad spectrum and individuals have so many differences. Did I mention I hate labels already?
I love this statement from your comment: “Labels are applied to people like price stickers at a supermarket.” It’s so true, and to our detriment. Just like those labels in the supermarket, the labels on people imply value and worth, and in our increasingly utilitarian society, people are too often disregarded (or much worse!) if they aren’t perceived as contributing enough.
I’m glad that the post touched you – that’s the point of a warts-and-all blog, to build community so we all know that we’re in this together. We are not alone. 🙂
Lovely to catch up with your blog via Ellen’s link up. I hope Nathan settles well into pre school x bron
Andi, I always enjoy reading your writing, even when the subject matter isn’t full of “sunshine and roses”, like some blogs. I appreciate your honesty, and although I can’t possibly understand what you’re experiencing, I know many do…and are encouraged by your sharing. So, feeling at a loss for great words of wisdom or consolation, all I know to do is offer sincere {{{HUGS}}}.
Oh, and I LOVE the photo at the top of this page!!