A Mom’s Advice on IEPs.

Having gone through the IEP process again this week, I’m sharing some thoughts. I’m no veteran, by any means. I know everyone’s experience is different, but here’s some mom advice based on my experience.

As parents, we may hear, for the first time, during the course of an IEP, the results of various tests (assessments) our child has undergone for the school district.  If the test results are not explained in layman’s terms, we can get lost.  It is up to us to ask for clarification.  The experts can be intimidating.  Don’t be afraid to tell them to make it clear what those results mean and how they will be used.  Let them know if you disagree with something that is said.

The test results can be disheartening.  They can be harsh to digest, especially in front of a bunch of strangers who are detached.  Be prepared for that.  Don’t let emotions get the best of you.

Parents know their child in ways that expert testers, teachers, and therapists do not.  We are experts in ways the school could never be.  The experts’ scores are mere snapshots of our 24/7.  How we achieve what is best for our child is based on our backgrounds, our emotional state at the time, and our confidence levels.  Don’t let your confidence waiver.

Don’t bring cookies or offerings to the “team”.  This is not a tea party.  Don’t think of making friends.  This is advocacy, plain and simple.  Bring your papers, your evidence to back what you believe your child’s functioning levels are and evidence of what he/she needs.

Coming from my background in litigation, everything is adversarial and anything can become adversarial.  In my limited trekking around the blogosphere, I’ve seen polite parents who hesitate to disagree and get taken advantage of,  and aggressive parents who don body armor and call out school administrators to the parking lot for the slightest perceived affront, earning themselves discontent where there would otherwise be none.

I don’t think there is a middle ground though – instead the best strategy is to listen to everyone, ask questions and take time to reflect on what was said and written.  Sometimes, you just have to have patience to get to a place where a good IEP happens.  It takes time.

I know the concept of the “IEP team” is one that works together to achieve the child’s best interest.  That concept is an ideal, a theory. I do not believe it is a reality at the beginning of any IEP journey.

Instead, especially early on, I see the “team” as three, separate “sub” teams.  One is the “family” team, the parents and the child.  The second is the “expert” team – the psychologists, therapists, and teachers, who test the child to determine appropriate services.  The third is the “school district administration” team that has a funding budget to, in theory, achieve FAPE for each child.

For all the sub- teams, there are three integral components to achieving an IEP that creates FAPE.  Honesty, respect and trust.  None is a given.  Everyone must earn respect and trust through honesty, before FAPE can become a reality.

Tests (assessments) are strange.  All the experts use them and they are written and designed by other supposed “experts”.  But some tests don’t necessarily fit or add anything to determining a child’s needs.   Don’t assume tests are accurate or always help just because they are “tests”.

For example, here are a couple of questions from the assessment given to me for my 6 year old high-functioning autistic son, just a couple weeks ago:

Can your child fix a bowl of dry cereal?  This includes getting the bowl, cereal, and milk and pouring both cereal and milk into the bowl.

My kid HATES cereal and I don’t eat it or keep it in the house.  So whether he could fix a bowl of cereal is irrelevant to our lives.

When your child is hungry or thirsty and sees a bottle or bared breast, does he move toward it?

Okay, why is he fixing cereal and going for the boobie in the same test?  If he is moving toward either a bottle or a bared breast, I gotta call ABA, because he’s six years old, people!!!

I kid you not – these two questions were on the same test.  Yes I know they are geared toward multiple age groups, but really?  Maybe I should’ve combined them.  He grabs the nearest breast – squirts milk into a container, and pours it into the bowl with the cereal.  Then he eats it.  Double points?

My answer choices were Yes/No but that’s not how I responded.  There were a few scribbles in the margin, legal objections, question marks and a lot of N/A (not applicable).  Luckily, the psychologist who asked me to fill out the test agreed there were problems and threw the test out, electing to spend 40 minutes discussing my son’s strengths and weaknesses as an interview on the phone with me, and separately, with our ABA case supervisor.

I was honest.  I didn’t try to “assume” any answers from his early childhood.  She was honest in saying that the test didn’t always fit and she respected my feelings.  That made me trust her.

School Districts have limits to their budgets.  They must serve X amount of special needs students.  The best case scenario is that the cost of a child’s needs does not exceed the money the school has estimated and set aside per child to “equal” a FAPE.  If, however, a child’s needs exceed the school district budget, the district can: (A) be honest and try to work out a plan, or (B) lie and tell the parents the child’s needs are not as great as they are or can be met without appropriate tools or services.  If something about the offer does not ring true, your instincts are probably right.  It may be a misunderstanding, or lies may be coming your way.

Initially, in any school setting, parents should have a healthy lack of trust.  Ask yourself questions:

  • Who determined what your child needs and how strictly did the testers follow the test parameters?
  • Do the test results shock you or approximate what you believed all along?
  • Are you evaluating the test results with your heart or your head?  Do the tests show your child to exceed levels you believe he/she is currently capable of as you have witnessed?
  • Does the offer address what you think your child needs?
  • Are the goals addressed, before the offer of FAPE, adequate or do they seem to complex, convoluted or backward for your child?
  • If the test results show a higher or lower level of functioning than you believe your child has, ask for a second test to be conducted by another source.  This simply may be a way to cut funding.
Don’t sign anything in that IEP meeting.  Take it home.  Review each proposed goal one by one.  Review the offer.  Understand the offer.  Talk the offer over with people who already provide services, with a medical doctor you trust, with someone outside the school system.
 

I am learning to respect those for whom I have held mistrust for in the past.  As I review their assessments, goals, and intent, I’m seeing more focus on my son as an individual and less as a number.  We are not at “trust” yet but the honesty has increased and so has the respect.  Maybe, we’re on the right road.

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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24 Responses to A Mom’s Advice on IEPs.

  1. This is great advice! You made me laugh with the cereal/breast feeding jape. I still feel like the pain in the a** parent sometimes, but my therapist reminded me that the other word for that is advocate. As for the tests, SensiGirl scored a 13 out of 100 on a nonverbal intelligence test, I just laughed. Everyone who knows her well knows how smart she is. The only use for that test is to identify children to invite into the district’s gifted school. From what I hear from other parents, the gifted school is not the way to go in this school district anyway. It didn’t change a thing for me or WunderTeacher. We KNOW what she can do and it’s not written into that test. There is so much our kids can do that isn’t written into any of the tests, I freely use N/A and add additional comments to the assessments they give me. Thanks for writing this.

    • solodialogue says:

      You are not alone in feeling like a pain in the a** parent! I think that is the best starting point though until everyone settles in to know the people you are working with and evaluate them
      (!) with our own “testing” of sorts! Haha!

      I’m glad you knew how to discard test results in favor of your own knowledge where they are so far off from your own experience. What we believe is based on what we observe every day -not a snapshot framed by a stranger. 🙂

    • blogginglily says:

      jape is a word that doesn’t get enough play.

  2. Flannery says:

    Nice post! I couldn’t agree more with all of it, but especially the part about signing nothing in the meeting. I’ve been pressured at every single IEP to just go ahead and sign, and I refuse each time, saying I want to review it with my husband, or give it more thought. Then they pressure me to get it back, signed, within 3 days. Something about their application of pressure makes me more resistant.

    And yes, the big thing to remember is that these people are not your friends. You can be friendly, but make no mistake, you are in the business of securing supports for your child, and they are in the business of offering the least amount possible, because they have to stretch it among so many students.

    Yeah, I really hate these meetings.

    • solodialogue says:

      They do like to pressure for the signed copy. And yes, funding is limited so always be aware and make sure your child has all he/she needs to get an appropriate education. What is appropriate will be those tools and services needed to reach goals you set in the IEP document.

      IEPs are not fun but your child will reap the benefits of your efforts! Thanks Flan.

  3. Lizbeth says:

    Well done. What is often left out too, is that with budget cuts parents and administrators are not on the same side as you might initially think. I went in thinking everyone around the table was going to advocate for getting services and in reality the school is trying to cut services due to funding. They have to figure out who gets what based on available dollars and oftentimes they simply will try not to provide unless you push. Now I know I’ve terribly oversimplified things here, I know that. It’s just something to keep in your back pocket.

    • solodialogue says:

      Thanks Lizbeth. Very important to keep in mind that division is made by the fact we do this for all the best interests of our kids and many on the other side do too but in the end – its the mighty dollar that has to be stretched by a bean counter who is desensitized to the children. And that will nearly always be adversarial. Thanks for the emphasis!

  4. I am glad to hear your take on this. I think we deal with the school in similar ways. I think there are some amazing people working with my son, but when we sit down in a room for formal planning, I am very aware that I am only concerned about my son and they do not have that luxury. they have to balance my son’s needs with all the other kids in the room and the budget constraints and union rules, etc. So, no matter how much I may like and admire these people I come prepared for battle. I am blunt, straight forward and pushy. I don’t know if that’s the best way but he is getting what he needs.
    Although in terms of testing we actually have the opposite issue from many parents. We have trouble getting the testing to show his areas of need and I am often fighting to get that reported on paper even though when things go wrong it’s clear as day to everyone there are needs. Interactive, one on one testing with an adult is a little slice of heaven for my son, so he does very well on those things. It’s why his autism was missed the first 2 times I had early intervention out to evaluate him. We had to find the right kind of tests this year, ones that measured ability to recognize facial expressions, emotions displayed by others, social cues. His scores on those had him in 1 year old range emotionally and I was thrilled to finally have some documentation to back it all up and have people stop expecting him to be able to do that stuff just because he can make his own cereal and do analogy problems.

    • solodialogue says:

      You do come from a unique perspective with Charlie. You have to advocate in a slightly different way but still knowing that tests will not necessarily show the things you know and see with him on a daily basis. It’s good that you found the right tests to evaluate his needs and that you have made that clear through the process. Being blunt is important to cut to the chase and proceed when you are confident. And for each of us it will be different but I hope people can pick something they need here to use in their meeting. Thanks for your perspective.

  5. Allie says:

    ooooo….This is good stuff. They sure do pressure you to sign stuff in those meetings. I was so confused by how quickly they did that part and really had no idea what I was signing and if it was something I should or shouldn’t be singing. Looking back, I should have asked more about everything but I guess I was afraid of looking dumb. The process is horribly confusing! Thankfully, we got lucky and they retested Cam (as you already know). Whew. In the meantime, I need to better educate myself on my rights and not be afraid to speak up.

    I love how you slid the word boobies in. Between that and Lizbeth’s post today, we’ve about got it covered. Now we just need someone to mention butts.

    • solodialogue says:

      I have intermittently lost my signal here over the weekend. Don’t know why! Anyway, what I wanted to say Allie, is that I am very glad that Cam was retested and that things are going the right way for you. I wanted to make sure you knew about the IEP Meme that we all contributed to a while back that you can find here http://wp.me/p1hjQz-16u

      Don’t worry about educating yourself on your rights – just look for what Cam needs and when you know what he should have – the speaking up and the rights will follow! 🙂

  6. Erin says:

    This is great advice. It always seems like we, as parents, have to give up our status as polite and cheerful in order to get what we need for our kids. I’m having just this problem right now – I trusted the provider too much, and now I have to swing the other way, and just be the no-nonsense $itch with the group of them. No more chitchat, just official business. I can’t afford to worry anymore about any of them feeling kindly towards me- it somehow seems more important at this point that they respect me and how hard I will fight for my children. No more meek, polite social graces once you’re an autism mama. Like you said, everything is adversarial -there is no middle ground. It’s exhausting. Really great advice.

    • solodialogue says:

      It’s unfortunate that polite is mistaken for weak in this circumstance. More often than not, though, it is. But it’s always been strange for me that when we moms advocate for our kids it comes off as being a “b”, where men come off as “strong” for the most part… hmmm. And thanks! And I do recommend the IEP Meme also – http://wp.me/p1hjQz-16u which links you to many other views and information!

  7. Thanks for your timely post and great advice. Will keep it in mind as we head into our first IEP. Boobies on a Friday post – way to kick off the weekend! ;P

  8. I also really appreciate this post. We are still pretty new to this whole process what with Joel only just completing Pre-K. I was very apprehensive when we sat down for our first IEP meeting to discuss the diagnosis issue (We had a dual diagnosis, one through the public school and another from a neuropsychologist, both of which occurred simultaneously.) So far, our interactions with his school team have been very effective and we are pleased with the progress he has made, but I am always weary that things can change with little or no warning. I will definitely take your advice to heart.

  9. Lisa says:

    The advice you’ve given is great. I wish I had read something like this before our first IEP meeting ages ago. While it is your experience, you raise many valid points!!

    For me, the biggest thing is to speak up, and to not let them and their “officialness” take over. Like you say, we know our kids in ways they never will…we need to advocate. If something doesn’t feel right…speak up. I struggle with this, because I have always been taught to respect authority figures…and then my therapist reminded me that I’m the authority figure on my kids…and that was a huge turning point.

  10. eof737 says:

    Great tips Karen… It’s important to be advocates for our kids even if others resent our involvement. Keep it up! 🙂

  11. Ronald Clay says:

    I would like to say that, coming from the husband of a Special Education teacher, my wife loves the kids she is with. She is with K-3 children and spends much more time at school than any of the General Education teachers at the school, most of that time preparing IEP for the 30 students she has. One problem she has is getting parents to show up for IEP meetings or even to get hold of them to set up the meeting. She has problems getting parents to return the necessary forms for testing of the children. I can understand that parents need to stand up for their children, I have three boys who are diagnosed with ADD and ADHD. Each reacts differently in situations and we have had one on one’s with all teachers of all of our boys. We stand up and we show up, for all meetings. I do agree with the advice, but please, don’t categorize all teachers the same. I have seen my wife in tears because she has to send a child to a learning center because she cannot provide the proper services just in her classroom. As I stated before, she loves her students and they look forward to coming to class with her. Know that teachers are advocates for your students as well, and sometimes that means that you, as a parent, need to hear things you are not prepared for.

    • withsilverbells says:

      I have a comment in the same vein – I am a graduate student in speech-language pathology, and I have completed a public school internship and am currently interning in Early Intervention (ages 3 – 5). I know I haven’t seen it all and I believe you about your experiences, but for my part the professionals I have worked with are very invested in the children they work with. They research, discuss, and worry about their needs. While I was in schools, I learned about why the “least restrictive environment” necessary for the child to be successful is thought to be the most beneficial, even though it may be more general ed and less exceptional ed. In Early Intervention, I have seen parents who don’t want to hear that there is a disability as their child grows away from them, and parents who are near tears with relief that their child qualifies for services that will help them to get off to a good start. The assessment team that I work with respects the parent as a member of the team, and the parent’s report of abilities and concerns or lack thereof is used with the other assessment tools to create a more comprehensive picture of the child’s abilities. Our special ed teacher tells the parent what you said here, that the assessments may show us a snapshot from an hour and a half that day but the parent may have seen that they are able to do certain things, and that is taken into account. We also use teacher reports if there is a daycare or preschool.

      I agree that not every assessment is right for every child, and selecting appropriate materials is part of what members of the team in question are trained to do. Many assessments have different domains, and frequently the items in each domain start with very early milestones and move along according to typical chronological development. It sounds like the assessment you described was highlighting different types of skills with those questions. Our psychologist administers a similar instrument with the directions to say yes if you child does this or did it when it was developmentally appropriate. It sounds like maybe the person you were working with should have spent more time discussing the assessment, what it measures and how, with you beforehand.

      I am sure that administrators worry about money and resources, but what I have seen is professionals who listen to the parent, and take the test scores as one component of a dynamic assessment. If they don’t think the child needed services, they tell the family that during the IEP meeting. If they do think the child needed services, then that is what they say. This is based partially on information from the parent. They absolutely do not recommend services for children who do not in their professional judgement (and taking into account parent report and assessment) appear to need them. No state would do that, for ethical and financial reasons. Additionally if a child qualifies for services, for ethical and professional reasons they would not deny it to them. Where I am in TN the criteria for qualification using a norm-referenced assessment is 1.5 standard deviations below the mean, even though 1 standard deviation below the mean is considered to be delayed and below the broad range of average given the child’s age. It is confusing that there could technically be a delay or disability that is not low enough for the state to grant services for it, but it is different from state to state.

      All that to say… I hope that your experiences improve. I think that most of the time the people on the IEP team are or want to be on the same page as you. If someone is a first timer, I think that allowing someone to go over your rights, as they will offer to do at every meeting, is a good idea, but also realize that these people want you to understand what is going on so that you can make informed, appropriate decisions. Ask a million questions! Don’t hesitate to ask. Sometimes a parent will ask something and I can tell the feeling in the room is, “My goodness I’m glad he asked that, that could have been a bad misunderstanding!” Everybody at the table wants to be understood. Again, I know that not every situation or team or member is “ideal,” but at least my anecdotal experience is that nice and polite parents motivate people to give the best that they can, but regardless it’s not about how the parent acts; it’s about meeting the needs of the child. Even if the parent was hostile and especially if the parent was kind and engaged, afterward the professionals talk about the meeting, the parents’ response, and how they think/hope their recommendations will be exactly what the child needs to be successful personally, socially and academically.

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