Those annual IEP (Individualized Education Plans) meetings all parents of children with “special needs” attend are something I used to dread. Meant to ensure our children are given the supports and accommodations they need, I went to our first meeting with eager anticipation. This was where, I thought, we would be able to work with a team of people all of whom had the same goal for our child – getting and giving her the best supports and accommodations available so that she could flourish.
What quickly became apparent however was that this was when her team would write a series of bullet points describing all that was wrong with her. All the ways in which she fell short, all the ways she demonstrated how incapable she was, were described in detail, documented and added to her growing file. This was the time, once a year, when I would sit and listen to that itemization, fighting back my tears. The few things said during that first IEP meeting that were supposedly positive regarding spoken language, were written as a criticism, “…uses gestures to whine or protest. She is described as shouting or vocalizing to gain attention.” I would leave these meetings feeling hopeless and filled with the sort of despair I described in yesterday’s post, Dare to Hope.
Today, almost ten years after that first IEP was written, Emma writes by pointing to letters on a letter board and more recently with both her RPM teacher and me, she is typing on a bluetooth keyboard attached to an iPad. No one touches her as she writes. Emma has written before about the words that come out of her mouth. I will quote her, since the way she describes what happens to her when she speaks is far more descriptive and eloquent than anything I might write. Emma wrote yesterday in her IEP meeting, “I try to talk, but the words just come out wrong.” A few months ago she wrote how she wished people would, “listen to my writing voice, but they listen to my talking voice instead.”
As always, I asked Emma if I could write this post about her first IEP, as an example of the assumptions made and how far off we were in our thinking as well as a document for those of you who are at the beginning of all of this. Emma generously agreed that this was a good idea and wrote, “know that just because a kid doesn’t talk or talks like me, doesn’t mean the words that come out are the same words that are in their mind.” Regarding her so-called “behaviors” which Emma describes as a body/mind disconnection, she wrote,”I hope to better control my misbehaving body, but sometimes it won’t obey.”
A few weeks ago I asked Emma if she could remember when she was very young. She wrote, “Yes, my body could not behave because I was not able to cope… too many competing sensations. I couldn’t make sense of everything that did not connect me with my irritable body.” Now keeping her words in mind, read these words taken from her IEP, dated 2005 (Emma was three years old):
Emma avoids “looking others in the eye, does not answer when people talk to her, does not get along with other children, seems unresponsive to affection and shows little affection towards people, withdrawn…”
“The skills that she does not show evidence of include: does not yet engage in make believe play, does not yet match objects, complete interlocking puzzles, repeat digit sequences, identify body parts or show understanding of number concepts. She does not yet point to body parts, clothing items, prepositional commands, or know size. She does not participate in story telling or give her full name or use pronouns… and shows limited interest in other children.”
The report goes on to say:
“She does not vocalize when another person calls her name. She produces a variety of consonant sounds.”
When I read Emma’s words and the way she describes some of what was going on for her and compare her words to the words written on her IEP, it is impossible not to see the massive disconnect between what was actually going on and what all of us assumed was going on. It is from those assumptions that her goals were then created. Goals such as: “Emma will increase communicative intent via word and/or gesture to consistently request object article/toy/food (8/10) trials.” “Emma will maintain eye contact and prompt (8/10) trials.” “Emma will use at least 10 objects functionally, 4/5x” “Emma will imitate 1-2 word utterances during play, 4/5x” the list goes on, but the goals are all either regarding compliance and/or acting according to non autistic standards of behavior using spoken language.
In contrast, yesterday we went to Emma’s IEP meeting with Emma, who contributed her own thoughts and opinions about the goals that were set by writing on the keyboard I held for her. At one point she wrote, “it’s very good having time to go over goals.” And when asked about the efficacy of being asked to use a mood chart, she wrote, “Sometimes I feel many things at once. Would the mood chart work for you?”
Can I just say how proud I am that my daughter asked this question? And by the way – No, Emma, being asked to chart my moods or anticipate what my mood might be would not work for me. I think it would actually really piss me off if I was asked, while feeling both upset, sad, frustrated, maybe a little frightened and annoyed to use one word to describe what I was feeling and then was asked, “What’s wrong?” when I could not rely on spoken language to adequately express myself and no one could support me in the way I needed, so that I could write either.
What was wonderful about yesterday’s IEP meeting was that her staff is dedicated and completely committed to listening to Emma and learning from her what it is that she needs and wants. Everyone was kind, thoughtful and patient and in the end we have an IEP that reflects our goals for Emma, but more importantly it is a reflection of her goals for herself.
Emma ~ 2004, the year before that first IEP
Emma's Hope Book 
That is awesome that she is able to participate now. I always look forward to what she has to say. It has helped me to better understand our child. Thank you for sharing. Please extend my thanks to your daughter also.
I will Margarette. So glad things you read here have been helpful!
I think it’s such a good thing you brought Emma to the IEP meeting and I’m very happy that she has an active role in formulating the goals, and the fact that the staff listened.
The way I found out I had an IEP was when I was looking through my parents’ attic one day, it was put in a box that was labeled “[to be] shredded”. When I asked my mom about it, she was quick to reassure me that I was normal and that the school did that to lots of kids to get money, which confuses me. An IEP requires a diagnosis of some sort, doesn’t it?
I remember Speech Class (as I called it), which I was taken out of the classroom to go to a trailer with only a handful of other kids. We mostly played games like Guess Who and Hangman. I had no idea that it was part of an IEP. Most of my goals were speech/language-based, with an emphasis on articulation. There were a couple of social-emotional goals too, something about being age-appropriate for all settings which seems impossible even for typical people.
Finding these papers brought up a lot of confusion and questions in me. These days, I am mostly verbal though I lose words in times of high stress or emotion. And even though I can speak, I still have pronunciation difficulties that I feel frustration and shame over. Words can be hard, it’s like a barrier. I much prefer to type.
That does sound really confusing and a bit upsetting too, I imagine.
I believe any IEP is written only after a diagnosis of some kind has been made, though not necessarily applicable to only autism. I believe there are many children with IEPs who have other diagnoses aside from autism.
Yep, every child who is diagnosed with a delay and/or disability and gets any sort of special services (speech, ot, pt, etc) has an IEP. Definitely not an autism only thing.
I know but I wish I knew what the diagnosis is so my mind can be at rest. 😦
I have reason to believe I’m on the spectrum due to a number of additional things like stimming and sensory issues but I’m not sure if that was overlooked or not.
Mich – do you have the entire IEP? It usually says something like “_____ has been diagnosed on the Autism Spectrum” within the IEP. If it doesn’t, are you able to ask one of your parents?
It’s an annual review from 1996, it says I have a speech/language development characterized by deficiencies in articulation, but nothing about ASD. I’ll have to ask my parents if they remember anything about the process.
Sounds like it is “just” as speech and language IEP. Any IEP would have a diagnosis in it. (And I say “just” not in the sense that it is not a big deal, but that is sounds like it is not anything else…but I don’t have it in front of me.) Is it possible that you were not diagnosed autistic back then? Maybe only the speech issues were picked up on, and the other characteristics were not? Just a thought.
Emma, I am SO proud of you being able to get through to the people that run the IEP and make them actually listen to YOU! And what’s more you get through to me, and I have tears running down my face right now so that I can hardly speak, and barely type. So isn’t that a switch?
All my love,
Granma
Emma will have a nice conversation with you, when we see you in another few months, just as she now is with her brother!!
XX
Dear Ariane,
I have been a long time reader of your blog, and this was the happiest post to me (not the first half!). You gave me a new goal which is to have my daughter attend the IEP meeting. Congratulations! Oh, and we are going to see Soma this summer!
Dear Emma,
You are a gifted thinker. Please continue to write. You are changing the world.
Asako
Oh Asako!! How wonderful. I am so pleased. You have to promise that you will keep me updated on how your visit with Soma goes.
Another tragic element to the way IEP meetings/reports are devised: the way things stand today, the “worse off” your child appears in the IEP report, the more services you are likely to receive from the education system and the government. If you want your autistic child to attend a private school because the special ed public school you’ve been assigned is horrible, you have to sue the state to cover the cost of “outside” tuition and services. That means you have to prove 1) that the public school placement you received was inadequate to address your child’s specific needs, and therefore violates your child’s right to “an equal and appropriate education” and then; 2) you must prove that the new school/services you are suing for provide a superior education.
The full burden of proof is on the parents. Therefore, it is actually in the parents interest (or it seems to be–unless you approach the problem from an entirely different perspective), that you child appears as “needy” as possible in order to acquire the maximum services. “Needy” of course, plays right into the deficit/disability model. Sadly, parents will rarely complain about IEP descriptions of their children in terms of “what they lack” because the alleged “lack”=more services and hence, the (perceived) possibility of a better education.
This situation is even more pronounced for parents of autistic children who are non-speaking or cannot express their thoughts accurately or reliably through spoken words. It wasn’t until we fully understood that: 1) Emma was highly intelligent, understood everything she heard and observed, and was capable of expressing her thoughts clearly and powerfully through writing and; 2) discovered and were trained in a method (such as RPM) that enabled Emma to express her thoughts–that we were able to lobby for her needs with some degree of effectiveness and therefore, get the kind of IEP Emma really deserves–one that proudly asserts her intelligence and capabilities and demands an education program that is truly “equal and appropriate.
Unfortunately, the burden of proof was still on us as Emma’s parents (and also Emma) to prove something she should never have to prove and should always be assumed: her intelligence and capability. Fortunately, we found a school where the principal and vice principal as well as many of her teachers and therapists fully believe in Emma and truly support her.
This is such an important piece of all of this, and incredibly, I I left it out. There is a “need” to state the “needs” of a child so they can qualify for the necessary supports. In Emma’s case the necessary supports that would prove to be helpful to her were not readily available, instead she was given all kinds of therapies that did little if anything, but as long as they didn’t actively harm her, we felt some degree of relief. THAT should not be how this works, but sadly, for many it is exactly how it works…
I was thinking exactly what Richard wrote…in order to get necessary services, your child needs to look more needy than s/he may be. I have a personal rule for myself: there are two days a year that I switch my thinking 180 degrees….the day we write the PLOP (how your child is currently functioning) on his IEP, and the day we write the functioning level on his paperwork to re-qualify him for county services. Those are the two days that I sit down and compare my son to other children his age and list all the ways he is “behind” them…all the skills he does not have but should…all the ways he is “failing”. It sucks. And it is hard. But I do it because it needs to be done so that he can get the services that he needs to keep making the wonderful gains that he is making.
As a side note, I always ask for a draft of his IEP before the meeting. I read through the PLOP at home (you know, where I can have a stiff drink if necessary), and then at the meeting I say that we all know how Nathan is doing, so we do not need to read through it. I know IEPs are depressing by nature, but I try to keep the focus on what he is doing well with, and how we can build on those skills. His school is actually pretty good about keeping these meetings from being too “gloom and doom”.
Finally a brilliant idea. Emma is perfectly capable of teaching the professionals a thing or two. She knows what she needs and is setting a great example. It gives so much hope to those who are starting this journey. Thank you both for leading the way.
I shuddered while reading that list of goals. Ack. Heaven forbid someone is using an object in a non functional way! And what is with the obsession over pointing to body parts?!
I have a mood flip chart that I keep on my desk and find helpful. I’m pretty alexithymic so flipping through the moods and choosing one can help me narrow down the dominant emotion (there are like 60 options) and is a good way to periodically check in with myself. It’s also fair warning to my husband. When he sees the frazzled card, he knows to just quietly go away. 🙂
It was pretty awful reading it. But I have to say the phrases that made me so angry all over again were the things that were said in such a nasty way, with so much judgment, not even veiled judgment, just obvious disapproval and anger… “uses gestures to whine or protest. She is described as shouting or vocalizing to gain attention.” Seriously? She was THREE! And doesn’t everyone shout because they aren’t feeling HEARD? Isn’t that kind of the point?? ARGGGG
RE: using an object in a non-functioning way
At my son’s evaluation at 3yrs old he pretended to fly a puzzle piece before putting it into its correct spot. He was “marked down” for not using it in an appropriate way (’cause, ya know, puzzle pieces don’t fly, silly). Later he was marked down for lack of imagination and rigidness for not wanting to use a plastic cucumber as a phone receiver when prompted to! Somebody please explain this one to me!
Aw… thanks Sherry. It helps that we’re following others who are ahead of us and extending their hands to help!
This is the first year I have an IEP. The only things it consists of are accomodations: adjusted passing times, being allowed to type my essays, and not having to run in gym being the main ones. My goals are all physical, in a manner I doubt is directly related to being autistic. I simply work on my muscle strength so I can get up and down stairs easier, and that’s only there so I have a goal. The first thing we talked about was that I needed no academic help. And my teachers get it!
What you write is a sad truth. Please know there are IEPs being written that are much better, with the positives highlighted, parental desires for their children taken into account and kindness and caring evident. Unfortunately, as Richard said, it is the list of needs that get the services in the current system, but that can happen with objective not judgmental statements. . I am so impressed that Emma went to her meeting and advocated for herself. Congratulations, Emma, you have so much to teach others ! Your perseverance is paying off. Keep up the good work, it is important for those who follow your lead. .
It’s great to see the shift in the attitude at the IEP meeting you were at with Emma, no doubt due to Emma’s input, go Emma 🙂
I’m wondering what Emma would have wanted for her education environment to be like at the age of the first IEP? I’m curious what her thoughts are on why the therapies were of no use…it seems she’s learned quite a bit over the years, was that mostly outside of school? FC seems to be the perfect fit for Emma, but if it wasn’t a good fit for another child, what is the best way to set goals for teaching kids with autism in school? Does she think there is merit to some of the therapies out there?
I will ask her! But just for the record, Emma is typing using RPM, which is not the same as FC in that there is no physical contact at all. The two are similar in that they are both based in a presumption of competence. You can read more if you’re interested here – https://emmashopebook.com/2014/04/24/fc-and-rpm/
Thank you, that’s my mistake…I do know she does it on her own, she’s amazing 🙂
Reblogged this on Spectrum Perspectives and commented:
A wonderful, sad, hopeful piece about expectations, judgments, and overcoming it all. The comments should be read as well, as they are also thought-provoking.
My son is currently on his 3rd year with an IEP and I do feel it has made a world of difference for him at school but that said I have never felt it was enough. Too many of the teachers and administrators in my opinion and experience still seem to be winging it, they have no real clue how to help children like my son, often all he truly wants is for his feelings and his point of view to be validated. His ETR team has met twice in the past month and half with no agreement between his team and us as to where we go from here. He is transitioning into middle school next year and they would prefer to send him with a 504 plan. While I do feel that my son has made great strides in the past three years I don’t believe this is the year to change what has worked for him, especially since transitions of any kind are a very big trigger for him. I can see the points they are making in regards to a 504 plan but the proposition if being without an IEP is terrifying to me. As good as I feel my son’s staff may be, we are going off into uncharted territory in a ship helmed by people none of us have a relationship with and we are putting our lives so to speak in their hands and are at their mercy.
Reblogged this on SENBlogger.
Nice post! I have attended IEP meetings as a foster parent a number of times. My wife and I have been asked to go (but haven’t been able to) as a ‘neutral’ voice in the meetings. Everyone is is always on a protectionist agenda in these meetings. I think a great strategy is to find out what everybody else (teachers, EAs) needs to do the best for your child. Once you have ascertained what everybody else needs in the care of your child…you can begin to get the best for your child….or so I like to think…
Today was our first IEP meeting ever, after fighting for ten months to try to get an IEP for my 12 year old son who is diagnosed with ASD (HF). It has been a TOUGH Year for him, and fighting the school has made it just that much harder–overwhelmingly so.
After 5 meetings where they insisted that despite his noted and clear diagnosis, he did not qualify for ANY accommodations, I hired an advocate, and suddenly they WERE doing the evals I asked them to do. Once they evaluated him they agreed with his private psychological eval and today as a 5 hour long battle of goals, measurements, challenges and definitions (the legal definition of “bullying” is so stringent that one child repeatedly assaulting my child does not qualify to be considered “bullying.”). We left there exhausted, but for the first time, with an IEP.
Just in time for the last week of school. Gooooooo figure.
I love hearing Emma’s thoughts. Tell her they make me smile and they help me to understand my son. And thank you for sharing this, especially today. I needed to read this!
Emma is so beautiful, on the inside and out.