Things You Should Know and Do Before Your Student’s IEP Meeting

I first published this back in 2013 (under a different title), but I think it’s worth a re-run (with some updates). While the advice here applies to any IEP, it’s probably most effective for IEP meetings that follow an initial IEP.  

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Recently, my husband and I went through a long IEP (that’s “individualized education plan”) process for our daughter. You’d think that, having done this a few times now, we would know what we were doing when it came to the IEP, right? Well, for reasons like stress, fear, worry, ignorance (but not the willful kind) and avoidance, it took us a (long) while before the light bulb in the attic finally flipped on. It also took the advice of some wonderful, giving souls who walked in our shoes once, too. And, I promised each one of those wonderful souls we would pay their good deeds forward. So, here it is: Things You Should Know (and DO) Before Your Student’s IEP Meeting.

Educate Yourself

Parents and caregivers find the IEP process daunting for many reasons, but two big ones stand out for me. The first is that the IEP process is psuedo-legal. Many legal rules prescribe what can and cannot be done to create, implement and change a student’s IEP, and it’s essential that you learn and follow these rules. Make sure the school district provides you with the required IEP procedural safeguards for parents, then read it! But, don’t rely solely on district resources. Consult other reliable, parent or student-focused resources as well. I recommend the series of IEP advocacy books written by Pam and Peter Wright. A student has certain rights, parents/caregivers have certain rights and school districts have certain rights. Every IEP team member also has obligations. Make it your business to know what those are.

Second, the IEP process involves making decisions about a student’s educational needs. If your student is newly diagnosed with a condition necessitating special education or learning accommodations, you may still be orienting yourself emotionally and intellectually. When IEP team members start talking about “generalizing” skills to the “mainstream” curriculum, using “reinforcers” to motivate performance, the “common core standards,” or providing a “slant board” for writing to assess “visual acuity,” this new, important-sounding vocabulary may reinforce feelings of inadequacy AND give the speakers an aura of trustworthy expertise. Don’t let this one-two punch take you down for the count or lull you into a false sense of reliance. There are many, many reliable resources out there — resources that don’t require a degree in cognitive psychology to read — that can help you become conversant in the vocabulary of special education and be an effective advocate for your child.  Also, don’t be afraid to ask questions of other IEP team members. Sometimes, the use of jargon is a habit and done not to confuse or mislead you but with the presumption everyone knows what the speaker means.

Get your ducks in a row!

Plan Ahead

Ideally, a student’s IEP should be the product of a collaborative effort by the IEP team members. Team work means collaboration; collaboration means supporting one another and seeking everyone’s contribution.  Too often though, a school team member hands the parent/caregiver team members the proposed IEP – already drafted and right before (or even at) the meeting. That doesn’t launch the IEP meeting on a collaborative note. I’m sure there are times when this is done deliberately; my experience, though, is that a lack of resources (read: only 24 hours in a day and too many IEP meeting clustered together) is the predominant cause of late-delivered IEP drafts.

To avoid feeling sandbagged, be proactive and plan ahead. During the benchmark periods in your student’s IEP year, make sure to follow up with his/her teacher to request data and assessment for that period.  This will do two things:  it helps you ensure satisfactory progress toward the goal (or identifies a need for adjustments to a goal), and it prevents you from having to interpret trends in an entire year’s worth of data when it comes time for the next IEP cycle.  Also, tell your student’s classroom teacher that you want to help draft the proposed IEP, and set a meeting date to do that a couple of weeks before the IEP meeting. Come to this collaboration meeting prepared with a list of the things you think your student is doing well and things you’d like to see him/her work on based on your observations, input from your student’s outside medical/therapeutic team, and the data you’ve collected from school over the year.

When you roll up your sleeves to get to work, don’t forget to open your mind to the real chance that you and your student’s school team members have divergent experiences with your student.  You and school staff members each see your student in different environments for a good deal of time most days, so it is expected that your student may respond differently in each environment given variances in stimuli and expectations. For example, Helene is far more likely to share a coveted object willingly when she is anywhere but home; at home, sharing is NOT caring according to her.  So, if I come to the IEP drafting table, seeking a goal to improve social communication around sharing, the school team members are likely to assert that such a goal isn’t necessary, and it’s likely their data will support that.  Conversely, Helene frequently engages me, her father and her brother in decent communication exchanges, asking to play a game, asking for help with something, or maybe even telling about her day.  However, this rarely happens at school.  The school team members always push for a communication goal for Helene, and to understand why, it is critical that we listen to and hear their input regarding observations of Helene during the school day.

Get the WHOLE PIE!

Oooooh. Whole IEP. I thought you said whole PIE. My bad.

Care About the WHOLE IEP, Not Just the Services Part

For the first two years Helene was in special education, my husband and I worried only about the part of her IEP that listed where she would be placed and what type of services or accommodations she would receive (e.g., self-contained classroom, speech therapy, occupational therapy, etc.) – the FAPE part. (That’s free, appropriate public education. Welcome to the land of alphabet soup …)

The “Present Levels of Educational Performance” (or some such variation) and actual goals/objectives section of the IEP barely registered with us. We figured that as long as Helene had the services she needed, we’d leave the implementation to the professionals, who probably knew better than we how to actually execute the plan. This year, though, we knew our meeting wasn’t going to be about Helene’s services, because those weren’t going to change.

When we finally really read the goals in her IEP, imagine our horror as we realized we had it all WRONG. The entire IEP is important, but arguably the most critical piece is the assessment of your student’s present levels of academic and functional performance (PLOP), because that assessment determines the goals, and the goals (and, more specifically, the benchmarks for progress toward goals) determine the services.

With that wake-up call and the profoundly important support of my fellow IEP-meeting warriors, here’s my best advice for tackling the PLOP and goals portion of the IEP:

  • Read and scrutinize the Present Levels of Educational / Functional Performance (PLOP) section. Identify each skill described (good or bad) in the PLOP, and write it on a separate line of notebook paper or type it into a line on a spreadsheet. (When we did Helene’s list, we typed progress in green and not-so-much progress or regressions in red to help visualize where we were.) Analyze the list to determine whether it paints an accurate picture of where you believe your student’s educational performance is. (Trust me, you are absolutely qualified to do this.) If something is missing, add it. If you disagree with parts, highlight those for discussion. If your student is old enough and capable / interested, get his/her feedback, too, and incorporate it. Again, the PLOP is the most critical part of the IEP. If the entire IEP team is not in agreement on the PLOP, DO NOT move forward. Keep working until the whole team green-lights this section.

To help us, I created this worksheet using guidance from various sources, to help tackle the massive project that is reviewing and revising a draft IEP:  IEP Workbook (Excel document).

  • Read the Goals and Cross-Check against PLOP, SMART, Strangers and Dead Men.
    • PLOP – Review the list of abilities and limitations the team agreed on in the PLOP. Then draft or double-check that there is a goal in your student’s IEP to address each area of need. If the abilities your student demonstrates are improving but still not at grade level, ensure there is a new goal that challenges your student to reach a little higher. If your student is missing an important functional skill, ensure there is a goal to address it. There must be a goal to address EVERY area of need. For some students, that may mean 2 goals. For others, that means 32 goals. There is NO rule regarding how many goals an IEP requires except that the goals must address every area of need. Do not allow school staff to convince you that more goals mean more work.  First, that’s not really even a relevant consideration.  But, more importantly, it is very often the case that your student will work on multiple goals simultaneously and that data collection for those goals can, therefore, also be simultaneous.  In other words, not really more work at all.
    • SMART, Strangers and Dead Men. First, goals should be SMART. Yes, they should be smart (as in a good idea), but what I really am describing here is a short-hand reference to the standards against which goals should be measured:  specific, measurable, action-oriented, realistic and time-limited. A sound goal meets each of these criteria. The chart below explains what each of the SMART criteria means, and you can use to analyze proposed IEP goals (or the goals you offer to the IEP team as alternative goals). 

SMART Goal Worksheet

    • The chart above also explains the Stranger Test, the Dead Man’s Test, the Relation Back Test and the Educational Progress Tests. Any of these will help you determine whether a proposed goal is written clearly enough for ANYONE to follow it. (Except the dead guy. If the dead guy can meet the goal, the goal isn’t really a goal at all.) Don’t underestimate the importance of writing goals so that anyone can pick up the IEP at any time and execute it. Turnover for para-professional staff in special education classrooms is high, and unexpected events happen. Last year, Helene’s classroom teacher was in a terrible auto accident that kept her out for a month. Be sure that the substitute (or substitutes) can read and immediately understand how to implement your student’s IEP. A month is a very long time when your student’s been around for only 48 of them. (For a great primer on how to write meaningful, clear, SMART IEP goals, I recommend Barbara D. Bateman and Cynthia M. Herr’s book, Writing Measurable IEP Goals and Objectives.)
  • Determine Services based on the Goals. Once the team agrees on the goals, the services and accommodations nearly select themselves. Still, there may be accommodations or interventions your student needs beyond what is specifically identified in a goal. When looking at the goals, ask yourself what accommodation would make it more likely your student will accomplish this goal. For us, this was one of the more difficult aspects of the IEP, because we didn’t really know what was available. Call on every resource you have: your pediatrician, your outside therapists, your Regional Center case manager, other parents, social service agencies in your area, the Internet (cautiously), the bookstore or library. Think about the types of assistance you provide to your student at home and how that might also work in the classroom environment. I found two books especially helpful: School Success for Kids with Autism by Dr. Andrew L. Egel, Dr. Katherine C. Holman and Dr. Christine H. Barthold and Understanding Motor Skills in Children with Dyspraxia, ADHD, Autism & Other Learning Disabilities by Lisa A. Kurtz. (P.S. If you’re in the bookstore, check the children’s book section for books such as these. Last place I would’ve looked …)

Confidence is holding up an imaginary wall with your shoulder while wearing pantyhose.

Don’t Be Afraid

Unfortunately, the IEP process is designed more to be antagonistic than to be collaborative. But, it is truly meant to be a project for the entire IEP team. YOU can help make that happen.

  1. Make nice. Make a point to learn something about your student’s teacher or other IEP team members, and let your actions show him/her you remember it. Did he mention a summer trip to India? Pick up a paperback travel guide and give it as a “just because” gift. Did she mention orange as her favorite color? Have your student make a special project and frame it in orange-painted popsicle sticks. You get the idea. Send a message that says, I value you as a person and teammate. Preferably, do this before the IEP meeting so that the “just because” part is genuine and not an obvious bribe.  😉
  2. Communicate early and often.
    • Get to know school; let school get to know you. Nothing is harder than getting through an IEP meeting with a room full of strangers who have a LOT of opinions about YOUR student. IEP meetings are often ripe for emotional anxiety, adoption of defensive postures and passive-aggressive behaviors. Don’t let this happen. Collect email addresses, telephone numbers and office hours information for all the members of your student’s IEP team – then USE THEM. If your student has a communication folder (s/he should!), read the notes that come home and RESPOND to them, even if it’s just to say “thank you.” Reach out to team members for advice outside the IEP context. For a while, Helene was “chipmunking” her food in her cheeks – for HOURS. I wrote her OT a note asking for her thoughts on how we might help Helene through this, because I was constantly terrified she would choke on whatever was in her mouth. The OT was thrilled that I sought out her help, she was quick to respond to me, and she had some great advice. In the process, I sent her the important  message: I value the experience you bring to this team.  
    • Help school get to know your student.  One piece of fantastic advice sent my way by an experienced special needs mom was to create a resume for Helene.  This fabulous template was designed by my awesome friend over at She’s Always Write:  SNS Resume (Word doc).
  3. Assert yourself, but stay reasonable. Collaboration means there are not “sides” in an IEP meeting. As soon as you start to view the IEP meeting as a win/lose or us-versus-them proposition, it doesn’t matter how you score the meeting results – your student loses. Without collaboration, your student doesn’t benefit from the group’s collective wisdom on how to create the best environment for access to educational and functional skills. My husband and I went into Helene’s last IEP meeting in agreement that we would demand and get a one-to-one aide for her, because we believed she needed one. Ultimately, though, we left without the 1:1 aide.  Although we made a case for why we believed the aide was necessary, after two hours of discussion, the school team members’ observations convinced us that an aide might actually make Helene’s situation worse. If we hadn’t been willing to listen, we may have pushed hard for something and “won” it only to gain something that really wouldn’t benefit Helene in the long run.
  4. Don’t judge based on a first (or even second) encounter.
    • You may not realize how often a teacher encounters a parent/caregiver who is very angry about and embarrassed by his/her student’s need for accommodation. I hear often from teachers that they would give ANYTHING for parents as involved as we are in Helene’s education … or event parents that would just return forms and voicemails.  So, if a teacher seems callous or cavalier in her initial approach to you, that likely does not come from resentment toward your child or special education in general but from old war wounds inflicted by prior bad experiences with parents.
    • Similarly, remember that teachers are people with all the frailties and quirks being human gives us.  While some teachers are really open and relaxed around kids, they may not feel that so much around adults. Give him/her the benefit of the doubt until you get to know one another. Also, pick your spots. Don’t spring involved questions or start what should be a confidential conversation with your student’s teacher while she’s trying to corral the kids onto busses and can’t give you her undivided or personal attention. And don’t sandbag – as soon as you feel like something merits discussion, discuss it. Don’t hold on to “little” things until you have so many you just unload. Give team members a chance to address your concerns before you assign fault. By the same token, be prepared to swallow just a little pride when it comes to your student. Nobody is perfect. (Except my kid. She’s totally perfect. *ahem*)
  5. Bring a comfort object and a support person. You thought comfort objects were only for our kiddos? Nope. When I go to my daughter’s IEP meetings, I bring coffee in a mug my older son made for me many years ago. It helps me visualize how the IEP meeting would go if we held it around my dining room table instead of around a U-shaped table outfitted with chairs about 10 sizes too small for grown people. That mindset helps me feel less like arguing and a lot more like listening — after all, that’s what I do at my dining room table over coffee. You may also bring anyone you’d like to an IEP meeting to act as a support person or an advocate for you. I highly recommend this. Even if your IEP meetings go smoothly, a trusted friend can take detailed notes for you during the meeting so you can give the team members your full attention. And, even if your student can’t really participate, bring him/her to the meeting. At one recent meeting, I brought Helene due to lack of child care, but having her in the room kept us on our best behavior, because her presence constantly reminded us we had the same ultimate goal: her success!
  6. Listen to your instincts. There are a lot of experts in the room during an IEP meeting, and that includes YOU. YOU are an expert about your child. So, if you’ve tried everything you can to set the tone for a successful, collaborative meeting but the process breaks down (or never really gets off the ground), call a time-out. Take a 15-minute break or a 15-day break. You DO NOT HAVE TO SIGN an IEP with which you do not agree, and you can leave the meeting at any time. It took FOUR separate meetings before Helene’s IEP team finally reached consensus on her goals, and there was definitely some butthurt along the way. In the end, though, I believe Helene’s classroom teacher, her speech therapist, her occupational therapist, and the principal shared our feeling of an enormous sense of accomplishment. We all feel invested in her success now, and we will all feel a lot less defensive if her next round of assessments don’t show as much progress as we’d like. It’s called buy-in, and its value cannot be underestimated. If you can’t get buy-in from where things sit at the moment, take a break, come back with a fresh perspective and try again.

I’m sure there are other things I’m not mentioning that I should. So, here’s a list of other blogs you might want to visit for more on the IEP process:

IEP Season, at Anybody Want a Peanut?

Ways to make your next IEP awesome!, at Mostly True Stuff (when you need a little comic relief from IEP season … and you will)

Are you new to autism? and My child needs an IEP, at Yeah. Good Times.

Pretty much anything ever written over at snagglebox.

IEP without Tears, at Pancakes Gone Awry

One Inch Closer, at Both Hands and a Flashlight

The M-word, at Autism and Oughtisms (the m-word being “mainstreaming”)

Dear School District: My Son is Not Just Another Brick in the Wall, at The Connor Chronicles

Flashback Friday, at This Side of Typical (lots and lots of fun new vocabulary!)

What are IEPs made of?, at Maternal Instincts

Above all, keep your head up. Just as every student is unique, so too are IEP meetings. Take every story of failure or success with a grain of salt. You will learn to cull from them the cautious optimism that will get you through each IEP season. And, if all else fails, I have a great recipe for Chocolate Whiskey Cake with Salted Caramel Buttercream.

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Why Thinking People Want to Talk About Services in the Wake of Tragedy

TRIGGER WARNINGS:  discussion of murder, abuse, PTSD, mental illness, suicide

COMMENT POLICY:  I will monitor comments on this post aggressively and will not publish any comment that attacks ANYONE, that contains unsupported statements represented as fact, engages in wild speculation, or is in any way abusive.  Thoughtful, polite, reasoned dissent is welcome and encouraged.

As some of you may know, this blog mostly is about my experiences as the parent of an autistic child.  Sometimes, I talk about autism in the broader context, but I make no claim to being an advocate for the autistic community.  I advocate for my daughter (and woe is the person who pisses me off when it comes to her), but my primary goals in writing this blog are to connect with the autism community and to find the support and education I need to be the best mom I can.  I try to pay forward what I learn by sharing my experiences in the hope that others benefit from that.  I believe that, to be the mom I hope to be, I must learn from other parents and from autistic persons.  I believe that with my whole heart.  I believe that I have to accept that I am sometimes (although unintentionally) ableist in my view of the world, so that I keep my mind open to ways in which I can change my behavior to effect change and role model change for others.  I want my blog to be a welcoming space for people who want to have a candid, intellectually honest, productive discussion about … stuff.  But, “welcoming” doesn’t always mean “comfortable.”  I do not accept the premise that autism is all rainbows and joy and special talents.  Life isn’t all those things.  So, there are times – like today – when what I want to write about is a time when autism hurts.

For me, being the parent of an autistic child is challenging on many levels, but it is not what I would describe as extreme.  In most respects, I find it quite rewarding.  Still, meeting Helene’s needs requires a lot of compromises our family had not considered making before she picked us as her world tour guides. Sometimes, the choices are insignificant in the larger scheme of things – McDonald’s and frozen pizza instead of kale and quinoa.  Sometimes, though, the choices are very, very big and very, very difficult.  For example, Helene needs about fifteen hours a week in therapy in addition to time spent at school.  To meet this need, my husband and I had to reexamine decisions we made about where and whether we worked, where we lived, and how we would balance caregiving responsibilities.  You know – all the stuff we very carefully planned before deciding to have another child.  We had to examine these life-altering questions not in succession with temporal buffers on either side but ALL AT ONCE.  We had to examine these questions within the confines of very limited choices.  That is stressful.  It is overwhelming.  It was the subject of much disagreement.  It was frustrated by our own learning curves.  It had cascading consequences on personal, professional, financial and social levels.  The difficulty was not because we railed against autism, refused to “accept” it or to “accept” our daughter.  She’s our daughter.  And, these difficulties emphatically were not something for which we blamed Helene (or anyone) – there was no blameworthy event (despite the never-ending “findings” published all over the Internet that attempt to place blame on someone for autism).  That, however, does not make the difficulties any less real, any more avoidable, any less stressful or painful.  It also is not possible to ameliorate (or effective to deny) the causal link between Helene’s autism and the way our lives changed after her diagnosis.  That is a fact, and that evolution continues as we all age and our collective needs and capabilities change.

Also a fact:  It was time and a little luck through which we found a balance.  For now.  But, I send my gratitude out into the universe everyday, because neurology seems to me a fickle, fickle thing. One day, it fires the neurons that lead to an explosion of expressive language and the next day it fires the neurons that lead to excruciating sensory pain.  In Helene’s case, what it has not lead to is physical aggression toward others.  It may not ever.  Is it because she is not neurologically wired that way?  Is it because of how we nurture her?  Is it because she has enough language and expressive communication that we almost always understand her and can meet her needs? Is it a combination of those?  I cannot say.  I know with certainty only that our family dynamic is not nearly as complex as it might be if Helene was harming herself or anyone in our home.  And, yet, I struggled to maintain my own emotional balance until we got our supports in place (and even thereafter) to help Helene on her journey.

When I say “supports,” I’m using this phrase loosely.  We are fortunate to live in a state that compels health insurance providers to cover ABA therapy so that we do not have to pay entirely out of pocket.  Of course, this doesn’t guarantee that Helene receives quality ABA therapy – believe me.  But, it’s a start.  And, we are fortunate that both my husband and I have law degrees, know where and how to find and interpret important laws to ensure Helene’s education and health care, and make us unafraid and well equipped to challenge schools and insurance companies that do not do what they’re supposed to do.  We are fortunate to have the love and support of a few close friends and family members who help us with respite, finances, and through moral support without judgment.  We are fortunate that Helene’s flavor of autism is such that we, as a family, have found ways to develop and express a strong emotional bond with each other.

But, I know quite a few parents who have a very, very different experience with their children – who do not get to balance out difficult behaviors with adorable ones, to “fix” an escalation of harmful behaviors with a cuddle or to benefit from available therapies – because their children have a severe form of autism marked by communication through physical aggression.  I know parents who live with children whose only expressive communication is to scream for hours on end; to bite, scratch, hit and kick objects and people; to pick themselves bloody and raw; to consistently lose control of their bowels; to perseverate on or continually attempt to touch a parent’s, sibling’s or stranger’s private parts.  So many of these parents lack access to resources such as 1:1 aides, respite care providers, therapists or even decent IEPs or school placements for their children. So many of these parents struggle with sleep deprivation, acute stress, acute anxiety, depression, and isolation.  So many of these parents cannot hug their children, hold their hands, comb their hair or sing them songs because sensory sensitivities make that painful for the child.  So many of these parents never hear, see or feel the words “I love you” coming from their child.

It’s an uncomfortable truth that some autism advocates do not like to discuss – the connections between aggressive / violent behavior, parental stress, frustrated or preempted emotional bonding and autism.  In fact, some advocates’ distaste for the topic is so strong and so severe, they shame parents who try to raise the issue into silence.

Which brings me to Kelli Stapleton.  In full disclosure:  I know Kelli.  I can’t say we were more than Facebook friends, but we connected through a parent-support community, and I was familiar with Kelli’s work to find services for her family and, particularly, her autistic teenaged daughter, Isabelle.  I followed Kelli with interest, because I don’t meet many parents of female autistics, and I appreciated having insight into Kelli’s experiences with Isabelle.  Kelli was in some ways addressing years still in my future.  I’m a planner-aheader.  That’s a thing.

One year ago, almost to the day, Kelli shocked many – perhaps most of all those of us who looked up to her as a tireless advocate for her daughter under some very difficult circumstances – when she tried to kill herself and Isabelle by carbon monoxide poisoning.  Isabelle fell into a coma but recovered.  Kelli suffered less serious injuries and was arrested almost immediately.  Kelli’s husband and Isabelle’s father, Matt, filed for divorce and has custody of Isabelle and the family’s two other young children.

This week, Kelli Stapleton plead guilty to a charge of first-degree child abuse.  Kelli has not yet been sentenced, but the Michigan sentencing guidelines indicate that Kelli serve anywhere between a year and the rest of her life (with the possibility of parole) in jail as the result of her guilty plea.  There are a complex set of factors the judge must consider when determining the appropriate sentence.  The judge will hear arguments from both the District Attorney and Kelli’s defense counsel, as well as consider a probation department report, to determine the sentence.  Kelli remains in jail pending sentencing.

The District Attorney originally charged Kelli with attempted first-degree murder to which Kelli entered a plea of not guilty by reason of insanity.  A psychiatrist (who spent 20 hours observing and evaluating Kelli) was prepared to testify that Kelli suffers from post-traumatic stress disorder, mood disorder and the effects of traumatic brain injury and that Kelli was legally insane at the time she committed these acts (although she was found competent to stand trial).  Kelli’s traumatic brain injury was the result of one or more assaults on Kelli by Isabelle, whose autism features aggression.  Isabelle sometimes directed her aggression at Kelli and was increasingly directing it at her younger sister.

These are the facts, as they have been reported through news outlets, and which I know from reliable sources to be accurate.  Some news outlets do not stray far from these facts.  Others report the facts in a way that emphasizes Kelli’s depression and Isabelle’s aggression, which many people interpret as making Kelli appear sympathetic.  I can’t and won’t say that is an unreasonable interpretation.  Some people interpret the expression or appearance of sympathy for Kelli as excusing or minimizing Kelli’s acts as an understandable, forgivable or condonable response to Isabelle’s behavior (or to Isabelle, in general).  I disagree with this interpretation, because I do not think my ability to look at Kelli’s situation and acknowledge or feel saddened by her desperation and irrationality in any way ratifies Kelli’s conduct as acceptable, and it does not prevent me from feeling angry at Kelli or from feeling concern, fear and heartbreak for Isabelle.  I don’t ascribe such critical thinking to the media.  I interpret the media’s emphasis as calculated only to seize upon details that generate the most controversy, the most discussion, the most interest and, thus, sell the most papers.

Whatever the media motivation, however, scattered throughout social media (which sometimes masquerades as “journalism” or “research”) is an enormous range of opinion about the blameworthiness of Kelli’s act.  Not surprisingly, a lot of the writing expresses very emotional reaction to what Kelli did.  The stronger the emotional reaction, the stronger the comments that follow – especially from those whose own emotional reaction is different.  For an example of what I’m talking about, take a look here and here.  If you are a brave soul and can suffer silently through false analogies, histrionics, and circular logic, go read the comments under The Thinking Person’s Guide to Autism’s recent post about Kelli’s plea.  I’m not linking to it, because while there is a lot of editorializing going on over there, there is not much that might be described as thoughtful.

I have strong, complex and somewhat conflicting feelings about what Kelli did.  My feelings are grounded in my experiences as the mother of an autistic daughter and a neurotypical son, as a person who struggles with depression and anxiety, as a former lawyer, as the child of a bipolar parent, as the child of an abusive parent, as a wife, as a sibling and as someone who knows Kelli (even if tangentially).  It is not possible for me to separate myself from my experiences, so they necessarily inform my feelings.  I understand, though, that this makes my feelings about Kelli’s actions unique to me.  True, some may have similar feelings.  That alignment, however, shouldn’t be mistaken for agreement.  That one person feels as I do is not the product of a meeting of minds but a simple coincidence and possibly shared experiences.  Conversely, some – perhaps many – will have a very different perception.  That shouldn’t be mistaken for disagreement.  That a person does not feel as I do proves only a difference in perception of – not quality or quantity of – experience.

This is one of the many ways in which feelings differ from opinions or conclusions drawn from evidence or facts.  Feelings are not “right” or “wrong.”  They just are.  Feelings may be stronger or weaker but not qualitatively different from a standpoint of accuracy.  Consequently, feelings can’t be negotiated or debated in a meaningful way (not that we’ll ever stop trying). You are not me; I am not you, and only we know for sure what really lives in our respective hearts.

You may believe in your heart that what Kelli did is forgivable or that she deserves some leniency.  You may believe in your heart that she can never, ever be forgiven.  Both positions are “right” inasmuch as they represent the genuine emotions of the persons expressing them.  Discussing our feelings about what Kelli did might us feel better about ourselves.  It might even be therapeutic to listeners/readers.  But, that conversation is limited in the scope of its effect:  you vent, I vent, but we don’t change anyone’s mind, because that’s not where our feelings are.  Changing minds is a critical first step to changing behavior.

So, what I want to talk about today isn’t anyone’s feelings about what Kelli did or even what the consequences for her actions should be.  I have to believe that we (as a society) feel that no parent should see murder (or suicide) as a reasonable, rational resolution of a difficult – even nightmarish – situation.  The experiences that brought us to that place will vary widely, but the experiences all lead to the same destination:  How do we keep this from happening ever again?

Of course, this is where the conversation tends to shatter into vehement disagreement.  I’ve read blog posts and articles and participated in online discussions (if being chastised, berated and yelled at can be considered a dialogue) where the opinion expressed is that discussing anything other than the complete and unqualified condemnation of a parent who tries to murder an autistic child is a form of ableism, because discussing anything else (including why the horrible tragedy highlights the continued need for better supports) “justifies” the parent’s conduct and devalues or dehumanizes the autistic person.

One thing I read over and over again is that the media’s reporting on a parent’s murder of a disabled child is biased in favor of the parent, because it is socially acceptable to view the disabled person as less than human and, therefore, less than deserving of life.  Indisputably, there are people who hold a negative view of disabled persons, particularly autistics.  How else can one explain something like this or this?   Statistically, this bears itself out.  Developmentally disabled persons are 4 to 10 times more likely to be crime victims than are non-disabled persons.  (Sobsey, D., D. Wells, R. Lucardie, and S. Mansell. 1995. Violence and Disability: An Annotated Bibliography. Baltimore, MD. Brookes Publishing.)  This is a horrific statistic.  The treatment of disabled persons as less than human, as less deserving of a life free of cruelty, shame, judgment or bullying, or as less worthy of love, kindness and friendship is intolerable.  Any action that changes the idea that mistreatment of another human being “okay” is a worthwhile endeavor.  So, I understand the appeal of the idea that narrowing the dialogue following the abuse or murder of an autistic person to condemning the behavior of the abuser/murder will get across a broader message that we, as a society, do not accept it, condone it, forgive it or excuse it.

But, the most ardent proponents of this position are swayed by the false charms of its symmetry.  Narrowing the conversation might challenge societal perception of the moral or ethical culpability of the parent (although no one seems to be able to point to any empirical evidence of this), but that does not reach the ultimate goal, which is to change the public’s perception of the value of the life of a disabled person.  Condemnation is reactive, not proactive.  Condemning the parent is too little too late and focuses only on a result not a cause.  Communicating a message that life is valued is done through actions that proactively preserve that life.

More than 50% of all cases of abuse of disabled persons are perpetrated by family members or peers with disabilities. Disability professionals (i.e., paid or unpaid caregivers, doctors, and nurses) are generally believed responsible for the other half. (Sobsey, D. and T. Doe. 1991. “Patterns of sexual abuse and assault.” Journal of Sexuality and Disability, 9(3): 243259.)  In other words, disabled persons face the greatest risk of abuse not at the hands of broader society but at the hands of the people with whom they spend the most time and have the closest relationships.

According to a report by the World Health Organization on prevention of child abuse and neglect:

A number of personality and behavioral characteristics have been linked, in many studies, to child abuse and neglect. Parents more likely to abuse their children physically tend to have low self-esteem, poor control of their impulses, mental health problems, and to display antisocial behavior [Citation omitted].  … Many of these characteristics compromise parenting and are associated with disrupted social relationships, an inability to cope with stress and difficulty in reaching social support systems [Citation omitted].  Abusive parents may also be uninformed and have unrealistic expectations about child development [Citations omitted].

The Journal of American Academy of Pediatrics notes:

Several studies reported increased psychological distress, including depression, anxiety, and components of stress, such as decreased family cohesion and increased somatic complaints and burnout, among parents of children with autism and challenging behaviors.”   – Pediatrics Vol. 119 No. Supplement 1 February 1, 2007. pp. S114 -S121. Journal of American Academy of Pediatrics

In this article from Disability Scoop:

Overall, researchers found that families dealing with aggressive behavior struggled with social isolation, concerns about the safety of people and property, lack of respite care and limited professional supports as well as the added expense of repairs and home modifications. What’s more, the families were concerned about being able to find alternate housing for their child with autism as they aged, according to the study published online this month in the journal Focus on Autism and Other Developmental Disabilities.

Though the study was small, researchers behind the report emphasized that little has been done to understand the daily experiences of families coping with autism and aggression. Their findings suggest that there’s far too little support for individuals with aggressive tendencies and those affected by them.

Parents described an “unbearable” level of exhaustion, with at least one mother comparing her situation to being in “jail for life.”

While generally speaking families were happy with the care their child received for core symptoms of autism, most said professionals offered only limited knowledge and assistance for dealing with aggression either through medication or behavior supports. One family was actually kicked out of a home-based program for individuals with autism because of the boy’s aggression, with officials concluding that the environment was not “safe or productive.”

Let’s rephrase this:

Parents with low self-esteem, poor impulse control and mental health problems experience compromised parenting, disrupted social relationships and an inability to cope with stress or reach social support systems and, as a consequence, are more likely to physically abuse their children.  Parents of children with autism and challenging behaviors are increasingly likely to experience the factors that elevate the chances of child abuse.

If, after a parent attempts to murder or murders her autistic child, the only conversation is about condemning or vilifying the parent, how will that conversation impact the population most likely to physically abuse autistic persons?  The population already suffers from low self-esteem, poor impulse control and mental health issues, so how does shaming someone who might see herself in Kelli Stapleton, improve the at-risk parent’s self-esteem, impulse control, mental health, disrupted social relationships, ability to cope with stress or access social support systems?  The answer is:  it does not.  Rather than mitigating any of the factors that increase the likelihood of abuse, it exacerbates them.

As a general rule, parents who feel good about themselves, who have sound support systems, and who are not experiencing constant, prolonged stress refrain from abusing their children not our of fear of society’s judgment or criminal punishment but because they would perceive the abuse as repugnant to their feelings of affection and responsibility toward their children.  When a parent reaches the point at which those feelings of affection and responsibility morph into the twisted idea that ending a child’s life seems like a plausible or – heaven forbid – loving option, the parent is unquestionably emotionally – and perhaps spiritually – broken.  Condemning a broken person does not stop the broken person from an irrational act nor does it stop another from breaking any more than telling a depressed person to “snap out of it and smile” or a paralyzed person to “just get up and walk” changes their mental or physical states.

What shaming does do is create fear, and fear is certainly a powerful deterrent.  But, what the parent experiencing suicidal or homicidal ideation fears isn’t the punishment that follows her acts, especially if she reasons she won’t be around for punishment or that the punishment will be “worth it” if she’s “saving” her child from pain.  What she fears is admitting that she’s broken; admitting that she thinks murder is a plausible solution to pain.  Why is she afraid?  Because somewhere in her rational mind she realizes the import of what she’s going to do.  Because she’s seen the zero-compassion-policy movie, and the ending is more frightening to her than the one she’s considering.  Because there are parents who are so unbelievably challenged, frightened, isolated, conflicted, depressed and irrational that jail and death are convincingly better options than living.

The way we convince society that the lives of autistic persons are worth living is by creating spaces in which autistic persons can experience a quality life.  To do that, we must enable the caregivers of autistic people to create those spaces by developing and maintaining effective and accessible resources, such as education, respite, housing, employment, psychological and behavioral therapies, medical care and legal assistance.  I want to emphasize effective and accessible.  It is not enough to say that a parent in distress can “call 911” or a hotline or to remind a parent in acute crisis that going to jail is “worse” than what she’s experiencing right now.  It is not enough to say that a family has a 1:1 aide, when what that aide if legally allowed to do is very, very little.  Those are not resources, especially when hospitals are denying beds to patients, first-responders are ill-trained and ill-equipped to respond to autistic aggression (and see here and here and here), and emergency services are short-term solutions (at best).

If we want to change the story about autism from one where parents or caregivers abuse or murder autistics in their care, where autistics are arrested, beaten or killed by first responders or where autistics are refused treatment by hospital and doctors, then we have to change the setting in which the story takes place.   

To value an autistic person’s life is to protect it.  To protect that life is to take the steps necessary to prevent that life from being seen as valueless, burdensome or tragic.  By creating spaces in which autistics and caregivers are educated, employed, therapeutically and emotionally supported, we decrease exhaustion, stress, isolation and hopelessness so we effectively mitigate the factors that underlie abuse.  By creating spaces for caregivers and autistic persons that are safe, loving, nurturing and supportive environments, we do indeed change the story’s setting.

To refuse to have the conversation – at any time – about a need for prevention of abuse through services and supports does not protect autistics; it is to be complicit in the continued marginalization and isolation of autistics and those who provide their care.

Dedicated to the entire Stapleton Family, whose suffering need not be in vain and who I hope now find themselves on a path toward healing.

 

 

 

 

 

I Got Yer IEP Right Here: A Survivalist’s Manifesto

Recently, my husband and I went through a long IEP (that’s “individualized education plan”) process for our daughter. You’d think that, having done this a few times now, we would know what we were doing when it came to the IEP, right? Well, for reasons like stress, fear, worry, ignorance (but not the willful kind) and avoidance, it took us a (long) while before the light bulb in the attic finally flipped on. It also took the advice of some wonderful, giving souls who had walked in our shoes once, too. And, I promised each one of those wonderful souls we would pay their good deeds forward. So, here it is: Things You Should Know (and DO) Before Your Student’s IEP Meeting.

Education

Educate Yourself

The IEP process is daunting to parents and caregivers for lots of reasons, but two big ones stand out for me. The first is that the IEP process is psuedo-legal. There are a lot of legal rules for what can and cannot be done to create, implement and change a student’s IEP. It is very important for you to know these rules. Make sure the school district provides you with the required IEP procedural safeguards for parents, then read it! But, don’t rely solely on district resources. Consult other reliable, parent or student-focused resources as well. I recommend the advocacy series of books written by Pam and Peter Wright. A student has certain rights, parents/caregivers have certain rights and school districts have certain rights. Every IEP team member also has obligations. Make it your business to know what those are.

The IEP process is daunting also because it involves making decisions about a student’s educational needs. If your student is newly diagnosed with a condition necessitating special education or learning accommodations, you may still be orienting yourself emotionally and intellectually. When IEP team members start talking about “generalizing” skills to the “mainstream” curriculum, using “reinforcers” to motivate performance, the “common core standards,” or providing a “slant board” for writing to assess “visual acuity,” this new, important-sounding vocabulary may reinforce feelings of inadequacy AND give the speakers an aura of trustworthy expertise. Don’t let this one-two punch take you down for the count or lull you into a false sense of reliance. There are many, many reliable resources out there — resources that don’t require a degree in cognitive psychology to read — that can help you become conversant in the vocabulary of special education and be an effective advocate for your child.

Get your ducks in a row!

Plan Ahead

Ideally, a student’s IEP should be the product of a collaborative effort by the IEP team members. But, too often, a school-side team member hands the parent/caregiver-side team members the proposed IEP – already drafted and right before (or even at) the meeting. That doesn’t launch the IEP meeting on a collaborative note. I can’t say there aren’t circumstances where this is done deliberately. My experience, though, has been that a late-delivered IEP draft is the product of a lack of resources (read: only 24 hours in a day and too many IEP meeting clustered together). So be proactive and plan ahead. Tell your student’s classroom teacher that you want to help draft the proposed IEP, and set a meeting date to do that a couple of weeks before the IEP meeting. Come to this collaboration meeting prepared with a list of the things you think your student is doing well and things you’d like to see him/her work on. Then roll up your sleeves, open your mind and get to work. Be prepared to have divergent experiences when it comes to your student – you and the classroom teacher each see your student in a different environment for a good deal of time most days. This is also a very good opportunity for you to see and ask questions about the data your student’s classroom teacher, paraprofessionals and therapists collect over the year to determine your child’s present levels of performance. The data should objectively support the classroom teacher’s goal assessments, so it’s a good double-check against biases (good or bad / yours or the teacher’s)

Get the WHOLE PIE!

Oooooh. Whole IEP. I thought you said whole PIE. My bad.

Care About the WHOLE IEP, Not Just the Services Part

For the first two years our daughter was in special education, my husband and I worried only about the part of her IEP that listed where she would be placed and what type of services or accommodations she would receive (e.g., self-contained classroom, speech therapy, occupational therapy, etc.) – the FAPE part. (That’s free, appropriate public education. Welcome to the land of alphabet soup …)

The “Present Levels of Educational Performance” (or some such variation) and actual goals/objectives section of the IEP barely registered with us. We figured that as long as our daughter had the services she needed, we’d leave the implementation to the professionals. This year, though, we knew our meeting wasn’t going to be about our daughter’s services, because those weren’t going to change. So, we finally sat down to really read the goals in her IEP. Imagine my horror when we realized we had it all WRONG. FAPE is important, but the most important of part of the IEP is the assessment of your student’s present levels of academic and functional performance, because that assessment determines the goals, and the goals (more specifically, the benchmarks for progress toward goals) determine the services.

With that wake-up call and the profoundly important support of my fellow IEP-meeting survivalists, here’s my best advice for scaling Mount IEP:

  • Read and scrutinize the Present Levels of Educational Performance (PLOEP) section. Identify each skill described (good or bad) in the PLOEP, and write it in a separate line of notebook paper or type it into a line on a spreadsheet. When we did our daughter’s list, we typed progress in green and not-so-much progress or regressions in red. Then, analyze the list to determine whether it paints an accurate picture of where you believe your student’s educational performance is. (Trust me, you are absolutely qualified to do this.) if there are things missing, add them. If you disagree with parts, highlight those for discussion. If your student is old enough and capable / interested, get his/her feedback, too, and incorporate it. The abilities and skills identified in this section of the IEP are the foundation on which the goals are built and the services or accommodations needed to meet those goals determined. It is the first most-important part of the IEP. If the entire IEP team is not in agreement on the PLOEP, you cannot move forward. So, don’t stop until the whole team green-lights this section.
  • Read the Goals and Cross-Check against PLOEP, SMART, Strangers and Dead Men.
    • PLOEP – Review the list of abilities and limitations the team agreed on in the PLOEP. Then draft or double-check that there is a goal in your student’s IEP to address each area of need. If the abilities your student demonstrates are improving but still not at grade level, is there a new goal that challenges your student to reach a little higher? If your student is missing an important functional skill, is there a goal to address it? There must be a goal to address EVERY area of need. For some students, that may mean 2 goals. For others, that means 32 goals. There is NO rule regarding how many goals an IEP requires except that the goals must address every area of need.
    • SMART, Strangers and Dead Men. Okay, not real strangers and dead men. First, goals should be SMART. Yes, they should be smart as in a good idea. But, SMART is an acronym for specific, measurable, action-oriented, realistic and time-limited. A good goal should meet each of these criteria. My husband and I created this chart to assess our daughter’s proposed IEP goals (or the ones we offered to the IEP team as alternative goals). The chart explains what each of the SMART criteria means:

SMART Goal Worksheet

    • The chart also explains the Stranger Test, the Dead Man’s Test the Relation Back Test and the Educational Progress Tests. Any of these will help you determine whether a proposed goal is written clearly enough for ANYONE to follow it. (Except the dead guy. If the dead guy can meet the goal, no bueno.) Don’t underestimate the importance of this. Turnover for paraprofessional staff in special education classrooms is high, and unexpected events happen. Last year, our daughter’s classroom teacher was in a terrible auto accident that kept her out for a month. You want to be sure that the substitute (or substitutes) can read and immediately understand how to implement your student’s IEP. A month is a very long time when your student’s been around for only 48 of them. For a great primer on how to write meaningful, clear, SMART IEP goals, I recommend Barbara D. Bateman and Cynthia M. Herr’s book, Writing Measurable IEP Goals and Objectives.
  • Determine Services based on the Goals. Once the team agrees on the goals, the services and accommodations nearly select themselves. Still, there may be accommodations or interventions your student needs beyond what is specifically identified in a goal. When looking at the goals, ask yourself what accommodation would make it more likely your student will accomplish this goal. For us, this was one of the more difficult aspects of the IEP, because we didn’t really know what was available. Call on every resource you have: your pediatrician, your outside therapists, your Regional Center case manager, other parents, social service agencies in your area, the Internet (cautiously), the bookstore or library. Think about the types of assistance you provide to your student at home and how that might be incorporated into the classroom environment. I found two books especially helpful: School Success for Kids with Autism by Dr. Andrew L. Egel, Dr. Katherine C. Holman and Dr. Christine H. Barthold and Understanding Motor Skills in Children with Dyspraxia, ADHD, Autism & Other Learning Disabilities by Lisa A. Kurtz. (P.S. If you’re in the bookstore, check the children’s book section for books such as these. Last place I would’ve looked … 🙂 )

Confidence is holding up an imaginary wall with your shoulder while wearing pantyhose.

Don’t Be Afraid

It’s an unfortunate reality of the IEP system that it’s designed more to be antagonistic than to be collaborative. But, it is truly meant to be a project for the entire IEP team. YOU can make that happen.

  1. Make nice. Make a point to learn something about your student’s teacher, and let your actions show him/her you remember it. Did he mention a summer trip to India? Pick up a paperback travel guide and give it as a “just because” gift. Did she mention orange as her favorite color? Have your student make a special project and frame it in orange-painted popsicle sticks. You get the idea. Send a message that says, I value you as a person and teammate.
  2. Communicate early and often. Nothing is harder than getting through an IEP meeting with a room full of strangers, because you are forced to talk about emotionally charged issues. Don’t let this happen. Collect email addresses, telephone numbers and office hours information for all the members of your student’s IEP team – then USE THEM. If your student has a communication folder (s/he should!), read the notes that come home and RESPOND to them, even if it’s just to say “thank you.” Ask for advice. For a while, our daughter was “chipmunking” her food in her checks. I wrote her OT a note asking for her thoughts. She was thrilled to respond to me, and she had some great advice. Send a message that says, I value the experience you bring to this team.
  3. Assert yourself, but keep an open mind. Collaboration means there are not “sides” in an IEP meeting. As soon as you start to view the IEP meeting as a win/lose or us-versus-them proposition, it doesn’t matter how you score the meeting results – your student loses.. Without collaboration, your student doesn’t benefit from group’s collective wisdom on how to create the best environment for access to educational and functional skills. My husband and I went into our daughter’s last IEP meeting in agreement that we would demand and get a one-to-one aide for her, because we believed she needed one. We didn’t didn’t get one, though — not because we “lost” the argument — but because after two hours of discussion, we had a much better understanding of why our daughter was experiencing classroom anxiety, and we realized an aide might actually make it worse. If we hadn’t been willing to listen, we may have pushed hard for something believing it to be right for all the wrong reasons.
  4. Don’t judge based on a first (or even second) encounter. You may not realize how often a teacher encounters a parent/caregiver who is very angry and embarrassed by his/her student’s need for accommodation. Remember that a teacher’s seemingly callous or cavalier initial approach to you in fact may be apprehension. Some teachers are really open and relaxed around kids; not so much around adults. Give him/her the benefit of the doubt until you get to know one another. Also, pick your spots. Don’t spring involved questions or start what should be a confidential conversation with your student’s teacher while she’s trying to corral the kids onto busses and can’t give you her undivided or personal attention. And don’t sandbag – as soon as you feel like something merits discussion, discuss it. Don’t hold on to “little” things until you have so many you just unload. Give team members a chance to address your concerns before you assign fault. By the same token, be prepared to swallow just a little pride when it comes to your student. Nobody is perfect. (Except my kid. She’s totally perfect. *ahem*)
  5. Bring a comfort object and a support person. You thought comfort objects were only for our kiddos? Nope. When I go to my daughter’s IEP meetings, I bring coffee in a mug my older son made for me many years ago. It helps me visualize how the IEP meeting would go if we held it around my dining room table instead of around a U-shaped table outfitted with chairs about 10 sizes too small for grown people. That mindset helps me feel less like arguing and a lot more like listening — after all, that’s what I do at my dining room table over coffee. You may also bring anyone you’d like to an IEP meeting to act as a support person or an advocate for you. I highly recommend this. Even if your IEP meetings go smoothly, a trusted friend can take detailed notes for you during the meeting so you can give the team members your full attention. And, even if your student can’t really participate, bring him/her to the meeting. At one recent meeting, I brought my daughter due to lack of child care, but having her in the room really kept us on our best behavior, because her presence was a constant reminder that we were there for the best possible reason and with the same ultimate goal: her success!
  6. Listen to your instincts. There are a lot of experts in the room during an IEP meeting, and that includes YOU. YOU are an expert about your child. So, if you’ve tried everything you can to set the tone for a successful, collaborative meeting but the process breaks down (or never really gets off the ground), call a time-out. Take a 15-minute break or a 15-day break. You never have to sign an IEP with which you do not agree, and you can leave the meeting at any time. It took FOUR separate meetings before our daughter’s IEP team finally reached consensus on her goals, and there was definitely some butthurt along the way. But, at the end, I believe our daughter’s classroom teacher, her speech therapist, her occupational therapist, and the principal shared our feeling of an enormous sense of accomplishment. We all feel invested in her success now, and we will all feel a lot less defensive if her next round of assessments don’t show as much progress as we’d like. It’s called buy-in, and its value cannot be underestimated. If you can’t get buy-in from where things sit at the moment, take a break, come back with a fresh perspective and try again.

I’m sure there are other things I’m not mentioning that I should. So, here’s a list of other blogs you might want to visit for more on the IEP process:

IEP Season, at Anybody Want a Peanut?

Ways to make your next IEP awesome!, at Mostly True Stuff (when you need a little comic relief from IEP season … and you will)

Are you new to autism? and My child needs an IEP, at Yeah. Good Times.

Pretty much anything ever written over at snagglebox.

IEP without Tears, at Pancakes Gone Awry

One Inch Closer, at Both Hands and a Flashlight

Integration – Why is it needed, and why is it so hard?, at Autism from a Father’s Point of View

The M-word, at Autism and Oughtisms (the m-word being “mainstreaming”)

Dear School District: My Son is Not Just Another Brick in the Wall, at The Connor Chronicles

Flashback Friday, at This Side of Typical (lots and lots of fun new vocabulary!)

What are IEPs made of?, at Maternal Instincts

I know there are more, and I will try to add to this list as I locate them. In the meantime, keep your head up. And, remember: just like every student is unique, so too are IEP meetings. Take every story of failure and success with a grain of salt. You will learn to cull from them the cautious optimism that will get you through each IEP season. At least that’s what I keep telling myself. 😉