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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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. 😉

Why I Wish There Were 500 Days of Summer

I’d like to say that I have no idea why I’m awake this early, because it is not a humane hour at which to be awake when one doesn’t go to sleep until 2:45 a.m.  But, I know exactly why.  And, it’s only going to get worse.

Summer vacation is about to be over.  I am trying my damnedest not to freak the hell out, but I can feel it bubbling right there under the surface of my very thin veneer of calm.

In rereading my posts of late, I realized that few of them are really about Helene or autism.  Why?  Because, we’ve been on summer vacation.  Because, despite all the articles and evidence and research and results that say that a child on the spectrum thrives in a predictable, structured environment, my little half-pint loves lazy, free-form days.  She gleefully moves about the house on zero schedule, randomly flitting from a television show to the trampoline to the sandbox to singing to playing with her new doll house.  She tells me when she’s hungry, and I feed her.  Sometimes lunch is at 11:30 a.m. and sometimes at 2:30 p.m.  The only time she gets grumpy or pissy is when I’m not paying enough attention to her (with “enough” being decided purely by her mood and whims), or when I announce we’re leaving the house (more on that part in a minute).  Yesterday, without a word, she went into the bathroom and used the potty.  ON. HER. OWN.  She even wiped (with about half a roll of toilet paper) and flushed.

Sure, the beginnings and endings of our days have routine.  We do the same things every morning:  use the potty, brush teeth, have breakfast.  We were pretty good about getting dressed, too, but I admit that we spend a lot of days in our pajamas.  Both of us.  This should be one of the benefits of working at home and it being summer, right?  (Right.  It’s a rhetorical question with only one correct answer.)  And, every night, we start getting ready for bed at 8:45 p.m. with the same flow of events.  But, between waking and bedtime, it’s a free-for-all, and Helene is totally down with that – as am I.

Admittedly, Helene’s willingness to be schedule-free at home has not translated into a willingness to venture outside the house.  Many times, getting Helene out of the house is a project, because she is convinced that we are taking her to school no matter where we say we’re going.  There are certain places we offer that we know she won’t fight – her aunt’s house, her grandparents’ house, Target (??!), the magical place that has frenchfrieschickensapplesmilk.  Other times, though, getting her out of the house requires some serious physical and emotional strength.

Sigh.

In a few short weeks, school starts again, and with that comes the end of the break in Helene’s anxiety and mine.  School ended on July 20.  Every morning since, Helene starts her day by shuffling blurry-eyed to the bathroom, telling me, “Mama, no school, no friend.”  If I don’t assure her right away that – no – we aren’t going to school to see “friends,” she will launch into a meltdown of gargantuan proportions.

I cannot begin to explain how much I dread this.  And, I hoped with all my heart that Helene would be through the Regional Center process and have seen the developmental pediatrician BEFORE school started, but it hasn’t worked out that way.  Her development-pedi appointment isn’t until the end of September, and we just learned that Regional Center accepted Helene and assigned her a case manager.  So, the morning is coming where I have to answer the “no-school-no-friend” statement with an artificially positive, upbeat and comical, “Yes! School and friends! How fun!” while bracing myself for the anxiety that will overtake her (and then me).  I have no better approach to this than I did the day school ended.

My anxiety about this is hard to control, because I am conflicted.  On the one hand, I do believe that Helene benefits from school.  Part of her resistance to school and schedule is because she’s a bossy five-year-old who likes to do things her way, and life just isn’t going to work like that forever.  I know she needs to learn about expectations and limits, and in the moments I allow myself to be objective and honest, I can admit that I am not the best person to teach her those skills.  I cave to her too easily because I don’t have the mental or physical fortitude to resist her for more than an hour or two at a time.  (Of course, I also don’t have four aides here with me at home … just sayin’.)  I also know she’s learning essential skills through OT, PT and socialization with peers.  I love Helene’s occupational and physical therapists — they are really bright, engaged young women, and their attitudes about and approaches to Helene make clear that they have a genuine desire to see her succeed.  And, although Helene’s teacher and I butt heads from time to time, she is very well-qualified for her job and has the absolute best of intentions.  So, there is nothing about the school environment I can point to as harming Helene outside of her clear anxiety about it.

On the other hand, Helene clearly HATES school.  What we discovered over the summer – quite by accident — is that what she may dislike most about school is the other kids, because it wasn’t until this summer that Helene added the “no friend” to her “no school” statement.  I arranged a play-date for Helene with a girlfriend from high school who also has a special needs child a little older than Helene.  When I was getting Helene ready to go, she kept at me with the “no school! no school” chant, and I said, “No.  No school.  We are going to the park to meet a friend.”  You would’ve thought I whipped her with a switch but for the scream that she unleashed from her toes.  “NO FRIEND!  NO FRIEND!”  I had some kind of out-of-body experience that let me get Helene out of the house, into the car and to the park.  She ended up having a great time as soon as she was visibly convinced that we were NOT going to school.  In the process, I discovered that Helene is less than thrilled by her classmates (a/k/a “friends”). What to do about that?  I cannot control who is in Helene’s classroom.  Helene also needs to develop social skills with peers (although she does pretty well with most people who are at least a few years older than she).

Also, Helene’s verbal skills seem to have exploded this summer.  We get “yes” and “okay” now in response to questions, instead of just “no” or “nope.”  She rarely pulls me to what she wants anymore; instead, she tells me or uses a combination of words and gestures.  She is frequently using verbs now.  She’s starting to get a handle on pronouns.  She’s even started putting (appropriate) words to some of her feelings, especially mad and sad.  A couple of days ago, she had a four or five-sentence conversation with the Hubs.  It was astounding.

So, here I am at this crossroads again, the person charged with making decisions about what is in my child’s best interests.  And, yet again, I feel completely ill-equipped for the task.  I don’t know.  I know what’s easier.  I know what’s less stressful.  But, I know that sometimes what’s best for you is what is hardest to do.

Where an I going with this?  Maybe I want advice.  Maybe I just need to write this down and get it out of my system.  Maybe I just want someone sending positive thoughts and energy for me and for Helene out into the Universe.  And, at least there’s this: my anxiety about Helene going back to school allows me not to think too much about the fact that Nate starts high school on Wednesday.  Yep.  One in kindergarten and one in high school.  Because that’s the way I roll.

The Story of the Mean and Other Nightmares

This post has been percolating for a couple of weeks, but the underlying ideas are some I struggled with most of my life.  I started talking about some of this recently with my therapist.   Then, Amy over at Lucy’s Football wrote an AWE. SOME. blog post about Mean Girls, which I very much related to and on which I wrote a too-long comment to say how awesome she is.  (You can go read it now.  Her blog; not my comment.  I’ll be here when you get back.  Really, it’s okay.  In fact, it may make my post even better, which I will totally thank Amy for later.  I promise.)  Right after that, I read a post by Jim over at Just a ‘Lil Blog about signs.  (His post actually has nothing to do with Mean Girls at all.  In fact, quite the opposite, it has to do with his pretty neat daughter, Emma.  I will also be here after you read it.  Go on.  Or, you know.  Maybe wait, ’cause it’s kind of a feel-good post, and we all know how I have a tendency to make people cry around here.)  Not one to pass up a sign, I decided it was time to make this post a reality.

Any-who … You probably want to make some coffee and get a snack before you read much further, ’cause this one makes my other “long” blog posts look like tweets.  Fair warning.  Also, this post is not about grammar or autism.  FYI.

I had an inkling kids could be mean.  When I was in second grade, there was a boy in my class named Vincent.  He had a bowl-cut if ever there was one, and I vividly remember that on picture day, his mom sent him to school in an ill-fitting suit, complete with a red bow-tie.  I felt bad for him — not because he looked “uncool” (my favorite outfit was a Pepto-Bismol pink suit with an accordion-pleat skirt, okay?) but because he looked miserably uncomfortable.  He looked the way I felt when my mother made me wear the thickest denim jeans known to mankind on a 100° F / 85% humidity day for a 2-hour car ride to New York City to visit my aunt.  (Seriously, who does that?)  My heart ached for him, and looking at him made me a little sweaty. Vincent also had horrible eczema.  It affected his hands the most.  So, when it came time to do one of the million things you do in second grade while standing in a circle, no one wanted to hold Vincent’s hand except our teacher.  I finally had enough.  Maybe it was because my mom has psoriasis, so I knew I couldn’t “catch” Vincent’s eczema, but I volunteered.  If you asked me then why I did it, I would have said it was because it made me uncomfortable to watch 21 kids staring at the ground and fidgeting in an awkward silence, silently praying that Ms. Krawczyk pick someone else to hold Vincent’s hand.  Still, even at 7 years old, the look of relief on Vincent’s face was not lost on me.  So, it just went unspoken that for the rest of the year, I would hold his hand during circle stuff.  His hands were rough, like sandpaper, but that was not remotely unpleasant and – in fact – a welcome relief from the disgustingly moist, clammy, vaguely food-crusted palms of half the other kids in my class.  My first lesson in the Mean came and went just like that.

It took a while for the rest of the lessons to come.  I loved school and being around the people at school until the eighth grade.  In third grade, my teacher, Mrs. Barax, brought me back a dreidel from her trip to Israel.  She gave me my own copy of Charlotte’s Web, which I still have, with her inscription to me.  She came over to my house for dinner. I thought that was so cool.  (Although it wasn’t until years later that I realized the purpose of her visit was to tell my newly divorced mother to get her shit together and start paying attention to me.)  I won third place in a dance contest, busting a move to Donna Summer’s MacArthur Park.  I was a bad ass.  

When I was in fourth grade, my class was a fourth/fifth grade mix, and Mrs. Yee asked me to tutor some of the students in the class in reading and writing.  I got to sit up at the front of the classroom when I did this.  SUPER cool!  

I was president of the Student Council in 6th grade, and that was all the cool, because I won the election in a veritable landslide.  (Mostly because I ran unopposed, but whatever.)  I got to help serve lunch in the school cafeteria one day a week, and I thought that made me spectacular.  I usually was picked pretty quick for kickball or dodgeball pick-up games, and I never thought twice about it, because kickball and dodgeball were wicked fun, and who wouldn’t want to play?  I went to school dressed like a kickball game might breakout flash-mob style, and it never crossed my mind that that was weird or different.  (There is nothing wrong with wearing sneakers and a skirt.  Lots of women riding BART sport that look.  I was forging that trend, ahead of the curve was I.)

I spent one afternoon a week with my home-room teacher, going to her husband’s law office or just hanging out with her, and it never occurred to me that made me a “geek” or a “teacher’s pet.”  (Well, actually, it never occurred to me that you wouldn’t want to be the teacher’s pet, because that came with some awesome perks, like escapist trips from the classroom to run notes to the office.)  When my 6th grade math teacher Mr. Burscio had a stroke, a friend and I went to the hospital to see him and sneaked in his favorite candy, because we genuinely liked him, and it scared the crap out us of that he might not come back to school.  I played first-chair violin in the local honor orchestra, which I told anyone who would listen.  No one EVER made fun of me for any of this.  Ever.

But, then eighth grade happened, and I learned damn quick about all the Mean, which caught me utterly by surprise.  Eighth grade started with a double-whammy.  Not only did we move, so that I had to change schools, but I skipped 7th grade, meaning I went from sixth grade to eighth grade.  No passing Go.  No collecting $200.  Now, you’d think that moving was a blessing, because no one would know I skipped a grade at the new school, so I’d be saved that.  But, a lot of shit happens in the puberty department between 12 and 13 – shit that was clearly not happening to me – and word got out.  So, here I am, new girl in a new school – no friends and at the MOST socially awkward point ever.  Eventually, I met a girl who lived near my house, and I instantly liked her because she was really damn funny.  The problem, I would realize later, is that she was friends with the “popular” girls.  They wore the right clothes.  They did their hair just so.  They lived in the right houses in the right neighborhoods.  The liked the right boys.  And, the harder I tried to fit in with this crowd, the faster I failed.  They had Reeboks; I had Pro-Wings from Kmart.  They had Bongo jeans; I had Wranglers from the discount bin at some random Western-wear store.  They had telephones in their rooms with their own phone numbers; I had to ask permission to make calls from the kitchen counter.  They always had money and a ride to go to the movies or the mall; I got an allowance that I had to shovel stalls full of horse crap to earn (and I mean that LITERALLY) and that I used to buy myself school lunch or to take the bus wherever I needed to go.

The first of the Mean – funny enough (not ha-ha funny but uncomfortably surprising-yet-not-laughable funny) – didn’t come from the girls, though.  The first of the Mean came from one of their mothers (who we will call Mean Mom).  I tried out for and made the cheerleading squad.  My motive for doing this was not the obvious, because I didn’t associate the cheerleading squad with popularity.  I didn’t even quite have a handle on the concept of “popular” just yet – it was developing only slightly faster than my boobs.  Instead, I was motivated by two equally important but different things:  (1) I loved dancing, moving, choreographing and performing, and (2) I could wear my uniform to school, which meant that for two blissful days each week, there would be no corduroy pants or quilted vests made by Grandma.  (I may not have liked those clothes, G.G., but I appreciated them.)  Lucky for me, I was good enough to make the squad.

That’s when I met Mean Mom.  She was our “coach.”  When we had our first squad meeting, we voted for squad captain.  We wrote down the name of who we wanted to elect on a piece of paper, folded it and put it in a hat.  I voted for myself, because I wanted to be captain.  I’m good at organizing stuff, and I’m a bit of a control freak.  When Mean Mom counted the votes, she huffed, “Well.  Someone voted for herself, I see.  How conceited.”  Wha?  Thankfully, she didn’t have the nerve to look me in the face, because I was red like a lobster and hot like the sun.  I had no idea I wasn’t supposed to vote for myself.  I also had no idea what “conceited” meant, but I knew from the disdain oozing from her voice like sludge from a sewer pipe that it wasn’t good.  When I got home and looked up the word (after several attempts at figuring out the correct spelling), I was beside myself.  Then, I was on a mission to make this woman like me.

Mean Mom and I apparently were not on the same page.  A couple of weeks later, I asked her as we left the gymnasium whether our uniforms had to be washed in the washing machine or taken to the dry-cleaner.  As the doer of my laundry by edict of Evil Stepfather (see below), I was super proud of myself that I thought of this before I washed the uniform and ruined it.  Mean Mom never answered me.  Instead, she said, “You haven’t washed that uniform yet?!?  You’re disgusting.”  The way she said the word “disgusting” made me want to take three scalding-hot showers in a row.  If there had been a bridge anywhere within walking distance, I would’ve thrown myself off of it.  Instead, we lived in the flattest place on Earth (except for the ginormous hill I had to scale to get the horse stables to shovel shit), and I had to settle for slinking away home.  I washed my uniform in the washing machine, opening the lid every five minutes to make sure it hadn’t fallen to shreds or some other awful fate bequeathed upon it by water and soap.  When it survived the first cycle, I washed it again, just in case.  I had a nightmarish vision of Mean Mom teaching the girls a cheer in my absence.  It involved nine girls clapping, rhythmically chanting,  S-T-I-N-K, then turning somewhat simultaneous cartwheels, landing on one knee, pointing to me and yelling, That spells STINK!

Mean Moms lead to Mean Girls.  I’m convinced that Mean is learned.  So, it wasn’t all that surprising to me when Offspring of Mean Mom was also a Mean Girl.  Misery loves company, and Offspring Mean Girl was friends with Meanest Mean Girl.

I don’t remember the intricacies of the Mean except that it made me hate going to school.  It made me tell stupid, untrue stories about myself in attempt to make people like me but which only gave them more ammunition.  It made me lip-synch Madonna’s Crazy for You in the school talent show to get the attention of a boy I liked.  It made me let my aunt perm my hair.  (Sorry, Aunt M, I know you tried, and that was very cool.)  It made the Meanest Mean Girl say super-hurtful things about me when I wasn’t around, which were all repeated to me by a shared “friend.”  But, the harder I tried to change anyone’s mind, the more it was like grasping a fist-full of sand — it kept slipping through my fingers.  Eighth grade culminated in Fighter Mean Girl cornering me in the quad one day, challenging me to a fight.  Like with punches and kicking of asses and other stuff that is no fun.  At all.  Lucky for me, I had just watched a documentary on what to do if cornered by a mountain lion (because who doesn’t?!?) and went into survival mode by trying to make myself seem bigger and more scary than her.  I started ranting like a lunatic, and it must’ve worked, because Fighter Mean Girl left without actually hitting me.  Plus, there was no audience for this call out, which probably took all the fun out of it for her.  So, yay?

Blissfully, the Mean Girls were mostly seventh graders.  So, I left for high school, and they didn’t.  Freshman year started out better.  I met a boy.  (As with many of the chapters in my life that would later start with that sentence, it didn’t end well.)  Boy seemed nice.  I let him hold my hand at school.  I let him kiss me after we went out for ice cream.  He wrote me cute notes and left them in my locker.  I introduced him to a friend, who was in eighth grade.  He had sex with her.  Then he moved away to Costa Rica in a middle-of-the-night kind of thing.  It was all too much for me.  I had a vague idea what sex was from what I could make out from the static-y, blurred and flickering television signal for whatever cable porn channel wasn’t scrambled quite well enough.  I wasn’t so eager to be a part of that, especially because the other resource I was given on this topic had really freaky pictures and words like ovulation, menses, semen, fertilization and vas deferens.  So, here I am, barely 13 and wondering, is that what girls were supposed to do?  Is that what boys wanted?  I had no idea who to ask or even how to ask.

Instead, I started to just shut down.  By the end of my Freshman year and the Carmel choir trip, I was beyond miserable.  Still, I tried out for the cheerleading squad again, hoping that if I belonged to something it would make high school a little easier.  My clothing woes would be solved a few days a week.  I would always have something to do on Friday nights during football and basketball season.  When I made it, seeing my name on that list was like someone throwing me a life preserver after treading water for a year.

And then there she was.  Mean Mom.  Again.  You see, Mean Mom’s kid made the cheerleading squad too as an incoming freshman.  We had some kind of meeting or practice – I don’t remember all the details.  But, as the group dispersed, I noticed Mean Mom left her car keys behind.  I picked them up and went looking for her.  Everywhere.  When I finally found her, she rolled up on me like an enraged Medusa, her blond hair flying and her crazy, blood-red, fake fingernails itching to rip open my flesh.  She screamed at me, “DO YOU THINK YOU’RE FUNNY?  DO YOU?! YOU LITTLE SHIT! YOU THOUGHT IT WAS FUNNY TO HIDE FROM ME?!?!?!?”  She ripped the keys from my outstretched hand as I stood with my mouth agape.  I sat down and cried as she stormed away.  Then I walked to the bus stop and debated whether and what to tell my mom.  I was sure that Mean Mom was going to call my mom and “tell” on me, and I was actually afraid my mother wouldn’t believe me that I’d not done anything wrong.  The only witnesses to this little episode were Mean Mom and me.  I was 13.  Who believes a teenager?

I left shortly after that for what would be my last full summer in Connecticut with my family there.  I carefully planned this trip to make sure I got back to California in time for summer practice.  Instead, when I got off the plane, my mother announced that she left Evil Stepfather while I was gone and moved us into an apartment in another city.  As the realization that I would be changing schools yet again sank in, I felt a sense of betrayal so tangible that it cut me down to my quick.  Not about the leaving – which was an about-damn-time kind of thing.  But, was moving to an apartment in the same city out of the question?  Really?  Moving us 3,000 miles away from the family when you and Dad got divorced wasn’t enough?

So, sophomore year began in a yet another new school, where I knew no one.  Luckily, a girl my age lived in the apartment next to us.  She was very nice to me, and she took me to a party with her, where I met some other people.  She let me sit next to her at lunch.  And then I met the girl who would become my partner in crime for a while.  But, there was no escaping the Mean Girls.  The Mean Girls voted, and I was unlikeable.  Near the end of the summer between junior and senior year, I got into trouble for something that cannot be discussed in a public forum until my children are MUCH, MUCH older, which got me grounded forever and ever. (Or three weeks.  Same difference.)  My sophomore-year friend — my Ace-Deuce, the Guess jeans to my Benetton sweater, the Rubik’s Cube to my Nintendo 64 — started carrying secret notes between me and the boy I was sort-of dating at the time.  Then he broke up with me and started dating her.   (Anyone sensing the pattern here, yet?)

Then I met THE boy.  I cloaked myself in the emotional armor of a boyfriend.  Honestly, he was more like my Friendboy; we hung out before the phrase “friends with benefits” even existed, but that captures it.  I thought I could be my dorky self around him.  We had microwave cake cookoffs.  He introduced me to music that actually sounded like music.  He let me sit with him under the “Mod Tree” at school even though my bright green and gold cheerleading uniform stuck out like the sorest of thumbs amid the see of black t-shirts and eyeliner.  He was the reason I had something to do most Friday and Saturday nights when there wasn’t a game.  I didn’t spend my time around him living in fear of saying something stupid.  I felt like I mattered.  His parents let me eat dinner at their house almost every night, and his mom sometimes helped me with my homework.  It sounds nice, and in many ways it was.  But, it is quite dangerous to invest that much of yourself — of your happiness and self-worth — in another person when you’re only 16, particularly when that other person is only 16, too.  It makes you do stupid things, like go to the college he wants you to go to instead of the one you want to go to.  Or believe him when he says you aren’t good enough for him when, in fact, you are way too good for him.

So, Mean Girls, here’s what I wish I could have said to you back then, when you were busy judging me from the comfort of your sheltered lives but I was scared shitless of you:

My parents divorced when I was 8.  My dad was a physically and emotionally abusive alcoholic and my mother has bipolar disorder marked by mild agoraphobia.  My Evil Stepfather was completely incapable of any kind of rational conversation about emotional issues.  (See next paragraph.)  This meant I never had an adult at home I could look to for advice about friendships or boyfriends.  So, Mean Girls, I had to find my way, and I made a lot of mistakes. Boys were especially complicated for me.  I didn’t want a bad reputation, I wasn’t trying to embarrass you or myself, I just didn’t know what the fuck I was doing.  I did want girlfriends more than a boyfriend, but I didn’t know how to have both at the same time, and I had no one to ask for guidance.  You weren’t offering any.

My mom remarried very quickly after my parents divorced, and she married an asshole.  He treated me, my sister and his own two children like his personal servants.  He made himself feel like a better person by embarrassing us.  He made fun of my brother, who is gay, to his face.  His own son.  He got into a fist fight with my biological father in the middle of an airport, right in front of my sister and me.  (Where is the TSA when you need it, huh?)  When I was 15, he threw a handful of tampons at me while a male friend and I studied, because he thought it would be funny.  He used the N-word like his life depended on it, no matter who was listening, including a friend who had just returned from a mission in Africa.  He was a cop, and he never went off-duty.  I stopped asking friends over to the house, because he’d invariably criticize their driving or parking skills.  He allowed us kids to take 3-minute showers every other day.  (There was a timer and a schedule in the only bathroom.)  He never laid a hand on me, but I listened to him beat (and I do mean “beat”) my younger step-brother with a belt for getting a bad grade in school or not changing his underwear.  I watched him once beat our dog with a shovel for digging holes in the backyard.  (You know, for being a dog? Who, by the way, was the same dog who hid under my mother’s bed for two days after once accidentally biting her when trying to take a piece of chicken out of her hand.)  In fact, the man was such a tyrant, that when he once caught me cutting school and kicking it at home with my boyfriend, I tried to commit suicide rather than face his wrath.  I was so afraid of him, that even though I admitted during a “family session,” in the safety of my therapist’s office, that I hated him, I took it back amid a torrent of tears on the ride home in the car in the vain hope it would bring some peace.  So, Mean Girls, while you were busy determining the social hierarchy, I was in a psychologist’s office just trying to get through another day.

My mother was a freak about money, and she often refused to pay for even basic things, like school lunch and clothes.  So, Mean Girl who left a nasty note for me in our shared P.E. locker about borrowing your tennis shoes — I’m sorry.  I did borrow your shoes without asking, because I was desperately trying not to fail P.E. for repeated dress-code violations.  I was too embarrassed to tell you this, and I made only $3.25 per hour at my job, so it took me about a month to earn enough money to buy my own pair of tennis shoes.  And Mean Girls who made fun of the way I dressed, yes I actually did dress that way on purpose, because it’s all I had to wear.  I remember visiting the home of the CEO of the Mean Girls one day.  She had a closet stuffed with new clothing, much of it still bearing department store tags, and she complained of having nothing to wear.  It invoked a feeling in me that I later learned was called “stabby.”   CEO Mean Girl worked at a popular clothing store.  After one of the other Mean Girls (who were not inoculated against viral attacks by each other by virtue of exposure) had been in to try on clothes, CEO Mean Girl gleefully announced to the rest of the horde that Mean Girl was “fat” because she was a size 8.  This, of course, wasn’t bitterness at all about the fact that “fat” Mean Girl was elected Homecoming Queen.  You know what really gets me, though?  CEO Mean Girl went on to become a child psychologist.  At my kid’s school.  Please file under WTF.

Having copious amounts of time to fill growing up, I read more books than Picasso had paint.  It gave me a vocabulary of considerable breadth and depth.  So, Mean Girls who made fun of they way I talk, I wasn’t trying to talk down to you, or embarrass you or make you feel inferior to me with my “five-dollar” words.  I actually went into every conversation with you assuming you were intelligent enough to understand the words coming out of my mouth or that you’d care enough about yourself to look them up if you didn’t.  I mean this sincerely and without an ounce of facetiousness.  If there was anything I understood less than your disdain for me, it was repulsion by intellect.

In fairness, I know I was a Mean Girl myself sometimes.  To all of the girls (or boys) in middle school, high school or college to whom I was mean, I am truly and deeply sorry.  I needed to grow up and become an adult to realize that friendship is never forced.  It is an organically occurring relationship based on common interests, mutual respect and fondness that isn’t dictated by where you sit in the quad.  My greatest sadness when I look back on my high school years is how much time I wasted on people who weren’t worthy of it, who didn’t want it, and who didn’t care.  You have no idea how many times – even now – I kick myself for rejecting anyone who reached out and offered me what I wanted most – a friend.  The irony of my behavior is not lost on me.  It’s no excuse, but please know this:  I behaved badly toward you because I didn’t like myself very much.  (I know that sounds kind of it’s-not-you-it’s-me-ish, but I swear it’s true.)

If anything has really brought this home for me, it is having children of my own.  I watch my son, and I realize how much emotionally smarter he is than I was.  Nate just is who he is, and his friends are as varied as you can imagine.  But, the best moment came last year.  For many years, Nate was friends with another boy, T.  T was a little awkward and a lot hyper.  Some of Nate’s other friends didn’t like T and, eventually, my son caved under the pressure of trying to mediate the relationships.  Nate told T he didn’t want to be friends with him anymore.  T was devastated.  About four months later, without talking about it with me or anyone else (that I know of),  Nate called T and apologized.  Nate told T why he had dissed him and that he regretted caving to the “peer pressure.”  T accepted the apology, Nate finds a way to hang out with T separate from his other friends and basically told the other friends to mind their own business about it.  I was so proud of him, I thought I would burst.  And, I was proud of myself, because he didn’t learn the Mean from me.

To my children, I say this:

  • You are beautiful. Don’t hide it under makeup or clothes that you wear for others.  The kind of people interested in you because of how you look instead of who you are are soul-sucking.  They will not be there when you need something or someone, so don’t invite them into your life by your appearance.  By the same token, if it makes you happy to grow your hair into dreadlocks, pierce your eyebrow, wear electric blue eyeshadow or wear a studded collar, I’m going to let you.  I’m not going to lie to you – that doesn’t thrill me.  But if you are strong enough to be your own person in that way, I’m not going to trample on that.
  • You are smart.  Don’t ever hide that, especially for the sake of trying not to hurt someone else’s “feelings.”  If people can’t handle your brains or are intimidated by them, fuck them.  (And I give you express permission to say “fuck them” in this context, but only in this context.  At least until you’re 18 or I’m out of earshot. Got it?)
  • You are worthy of love.  Repeat after me.  You. Are. Worthy. Of. Love.  There will be Mean Girls (or Mean Boys), and I cannot stop that.  But, if they vote you an outcast, please consider yourself lucky.  Do not consider yourself unloved or unloveable.  You are loved more than you could know, and there are kindred spirits out there with whom you can find friendship.  But most of all, please love yourself.  When you cannot do that, you make bad choices that you will regret later in life.  You let others’ hearts and minds dictate your life’s path instead of listening to your own heart and mind.  You know you better than anyone.  Be the CEO, CFO and President of your life.  Papa and I will always be your Board of Directors.
  • I will rip the face off anyone who hurts you.  Okay, not really.  But, I will want to.  So, please, please, please know that you can come talk to me about anything.  I will be there for you.  (Cue cheesy Friends intro.) I can’t be your friend just yet, but I am your protector, your guide, your teacher, your counselor, your safe haven, your nurturer.  I will do whatever I can to salve the hurt of your wounds.  I will go to bat for you, and I will swing for the fences.  Later in our lives, when I’m ridiculously old, and if I’ve done my job well, we will be friends.
  • The Mean comes from fear.  Some people are afraid to be alone.  Some are afraid to be different.  Some are afraid to be found out for who they really are because it doesn’t meet the expectations or demands of others.  These fears come out as the Mean.  Remember that before you lash out at the Mean Girl or Mean Boy who gets under your skin.  Lashing out only makes you another Mean Girl or Mean Boy, no matter how justified you feel or others might think you are.  Live your life, and pity the Mean.  But, don’t feed it.
  • The Mean forget; the victims don’t.  I am 40 years old, and I have no problem recalling the Mean I experienced almost 30 years ago.  In excruciating detail.  But, my guess is that if you could ask any of the Mean Girls involved, they may not even remember me let alone the events I’m describing.  Remember that your words and actions are powerful.  They can hurt worse than fists.  Speak, write, post, tweet, You Tube, text and email with care.  Treat others as you wish to be treated.  A moment of funny for you may be a lifetime of hurt for someone else.

If you remember these things, the Mean cannot hurt you and you cannot hurt with the Mean.

What If I Can’t? and Other Questions about #Autism and #Parenting that Wake Me at 4am

Yesterday, my husband and I managed to get Helene to school.  The process started at 7:30 am and didn’t end until about 9:45 am.  We went through various phases of resistance that culminated in Helene crying from the house, to the backseat of the car and all the way to school, “Mama, please!  I want home! I don’t like school!  Please, Mama, please!”  She had it on repeat with the volume on 10 for the whole 2 mile drive to school.  We hit every stoplight.  And, yes, there was a lawnmower running nearby just to make sure we got the cherry on top of the cupcake of our morning.

We got her into the office for the tardy sign-in routine.  Helene continued her protestations and tears.  We we told we weren’t allowed to walk Helene to class, so an aide came to get her.  Helene’s pleading to leave only escalated when the aide appeared, but somehow I didn’t burst into tears until after I was outside, and Helene couldn’t see me anymore.  I’m sure it took a good ten minutes to get Helene from the office to the classroom.

For the past few weeks, we’ve been going through some enormous changes, and I really do not know what to make of them.  As I wrote before, Helene’s teacher was out for a while, which caused a lot of classroom and staff changes.  Helene did not handle that well at all.  To be clear, I was not and am not faulting Helene’s teacher for the absence.  Obviously, that was beyond her control.  But it nonetheless impacted Helene; she suddenly became super-resistant to going to school, her sensitivity to noise spiked, and she started to vocalize more her protestations (“I don’t like ____ being one of her new, favorite expressions).  She also started demonstrating an unwillingness to leave the house — period.

So, the past two weeks, we kept Helene home from school more often than not.  We forced her to leave the house only for something “fun.”  We emailed her teacher and the principal, asking for advice.  Instead, we got a lecture about Helene’s attendance.  Well, you think?  That’s pretty much what we’re asking.  So, we met with Helene’s social worker.  She is a  lovely, intelligent woman whom I adore if only because she doesn’t talk to my husband and me like we are idiots.  She provided some great guidance, but she also reminded us that getting Helene’s IEP changed in any meaningful way before school finishes in June will be impossible.  Then, we visited Helene’s pediatrician.  I love her, too.  We got her by accident when Nate’s pediatrician retired.  She’s about my age, has two kids of her own and doesn’t bullshit me.  She listens, she responds, she follows up.  She referred us to a developmental pediatrician, but who knows when that appointment will be.  In the meantime,  I am researching websites and making phone calls, looking for information or guidance.  I’ve talked to a lot of voice mailboxes, but not a single, live human.

We held out hope that once Helene’s regular teacher returned to class and things got back to the typical routine, so would Helene.  Helene is not settling back in at all.  Her agitation about school starts at about 7:30 p.m. — the night before.  Last night, Helene was so upset about the prospect of school the next day, she climbed into my lap at 8:30 p.m. and didn’t leave it until she fell asleep.  This morning, she crawled into bed with me and said, “Good morning, Mama.  No school today.”  Sigh.  Happy Friday.

While Helene was home from school more than not, we noticed not only the concerning changes in her behavior but some really positive changes, too.  She uses more verbs:  “I hear an airplane!” or “Mama stirring it.”  She actually has conversations with us throughout the day.  Granted, these are two or three sentence conversations, but just getting from question-echolalia to question-answer is huge.  She’s stopped needing a nap in the afternoon, because we haven’t woken her in the morning for school before she’s naturally ready to rise.  That means she’s going to bed and falling asleep at a reasonable hour more often than not.  She sits on the potty at least once a day — and goes — without a huge meltdown or argument. She opened the lid on a bottle of water by herself for the first time.  She is starting to get the gist of pronouns, especially “me.”

I think about all this, how much Helene is obviously distressed about going to school, and I wonder why we make her.  Is her anxiety, which becomes my anxiety, worth whatever benefits she gets from school?  There are definitely benefits.  She can manipulate a pencil well enough to write her own name.  She will touch wet paint and not only tolerate it but enjoy it.  She recognizes the entire alphabet and numbers up to about 25.  She’s (sort of) learned to take turns.  She eats foods at school that I would never get her to eat at home.  (Although, the day she walked up to me and smashed my cheeks in her tiny hands, saying “Chew!” over and over again was a bit disconcerting.)  She has her schedule at school memorized and will gladly recite it to you.  Helene’s speech and occupational therapists appear quite smitten with Helene and to enjoy working with her.  Her teacher is very well-educated and experienced; I felt her only shortcoming was that she doesn’t have children of her own to enable a certain degree of empathy I wish she had.

But that was before the email.  About a half hour after school let out yesterday, Helene’s teacher finally responded to our request for help.  There are some suggestions in the email about talking to Helene in an “upbeat voice” and telling her to “take a breath” when she’s upset.  We were chastised again for Helene’s spotty attendance and told that was the reason for her regression.  Then she wrote this:  “By modeling calm demeanor, rather than mirroring her emotional state, we are nearly always able to redirect her.”

If you heard a huge, thunderous bang yesterday afternoon about 2:12 p.m., that was my head exploding.

For the love of Pete, Helene is my daughter.  I have a natural, reflexive instinct to take away what pains her.  If she is in distress, how can I not be?  I understand Helene will be less successful at calming herself during a fit of panic if I feed it.  The majority of the time, I think my husband and I do a very good job of keeping our cool around Helene, because we understand that helps.  But, I am human, and I am going to feel like a giant pile of shit when I haven’t had enough sleep, I’ve spent the past hour listening to my daughter beg me — using her limited vocabulary and a lot of tears — not only to let her stay home but to take her pretty much anywhere else on Earth she can think of, and I have to face the rest of the day knowing that this whole process will start again tonight.

Even then, though, I’m not nearly as offended by the subtext of Helene’s teacher’s email that we are causing Helene’s anxiety as I am about the implicit expectation that I can just turn on a dime and stop caring about how anxious Helene is.  Apparently, there is no need to be exhausted, anxious, sad, frustrated, confused and concerned about why — seemingly all of a sudden — Helene melts down about going to school.  I just need to tell her in an upbeat voice what I want her to do, then ignore the kicking, screaming, running-and-hiding, crying, begging, pleading, tearful meltdown that follows.  It worked so well for Helene’s teacher today that Helene threw up not once but twice in class.  This is something she’s never done at home unless sick with the flu.

What if I can’t?

What if alternative behavioral interventions don’t work?  What if they work only when the person employing them is emotionally disconnected from the person to whom they are applied?  Maybe it is physically or emotionally impossible for me to do this.  My instinct is to hold Helene; to rock her, to soothe her with words – and she lets me.  How do I “ignore” Helene’s “non-preferred behavior” of expressing a desire to avoid school when the whole object is to get her ready for school, out the door and onto campus?  There is a certain measure of this that seems downright idiotic to me, because how the holy hell do you do both at the same time?

What if I shouldn’t?

What if becoming a cold, sterile clinician toward my daughter instead of the loving, comforting, understanding parent I’ve been is not what’s best or what’s “right” for her?  My mommy-intuition buzzer is going off like a fire alarm, and it’s telling me that something in the classroom environment is not right.  After the monumental struggle of yesterday, I was dreading transitioning Helene from school to her social skills class.  But, when I picked her up (and we evaded the lawnmower out front and the leaf blower across the street — WTF???), she said, “Go see, Dr. __, ___, __?,” naming off the teacher, aide and student in social skills to whom she seems most to relate.  We got to campus, parked, and Helene walked with me from the car to the classroom – a considerable distance – without complaint or even encouragement.  When the aide opened the door, Helene walked right in without even saying goodbye or looking back.  I walked to the car wondering, Why so different?  The only explanation I can make sense of is that there is something in one classroom she really doesn’t like and nothing in the other classroom that bothers her that way.

What if it backfires?

After reading Helene’s teacher’s email again last night, when I was in a better frame of mind to process it, it occurred to me that the applied behavioral intervention techniques Helene’s teacher uses might be backfiring on her.  Apparently, the practice involves telling Helene, “I don’t like it when you ___” [insert whatever Helene is doing that is not “preferred”].  If, after a couple of attempts to redirect her the teacher is unsuccessful, Helene is deprived of attention.  Repetition is apparently a key to getting the student to replicate preferred behaviors.  Well, it’s working — Helene learned to imitate this perfectly.  When she doesn’t like something, she tells us.  If she doesn’t get what she wants after several attempts at expressing her displeasure, she tries to evade us (e.g., deprive us of her attention) by tuning out completely or running upstairs and hiding under her brother’s bed or in ours.  If this is the result her teacher is shooting for, she hit the target.  Somehow, though, I doubt it.

What the Hell Am I Doing?

What I’m left with – yet again – is more questions than answers.  I don’t know what the right thing is here.  Do I push Helene to continue at this school, under this IEP?  The message I took away from the teacher’s email was that either we do that or she and I are no longer partners but enemies.  How’s that gonna work?  So, do I look into other schooling options?  I don’t even know if there are other options short of homeschooling her.  And, is that what’s best for her?  Sure, no one will love her more or try harder than I will (or her dad would), but I’m not a special education teacher.  There are somethings I won’t push because I am her mom, because I do love her and, therefore, having feelings about the cause a conflict between what’s best for Helene and what’s manageable for me, and because I have her 24 hours a day, seven days a week (about which I am not complaining but which does affect how much energy, patience and time I can give her).

In the law, the only sure answer is “it depends.”  I know that same philosophy applies here — what would a reasonable person do under the totality of same circumstances?  But, that lack of certainty never bothered me in my office, because I knew where to go to find the answers.  I could find a needle in the haystack of never-ending judicial opinions, statutes, regulations, practice guides and treatises.  Now, though, I am experiencing the desperation and frustration that comes from uncertainty and a lack of boundaries.  Damn lemons.

So, I would love for adults on the spectrum or the moms, dads, caregivers or relatives of someone on the spectrum who traveled these roads before I to share what has worked for you.  Please don’t tell me I am an awful mom, or that I don’t understand my daughter or autism.  First, I beat myself up enough, okay?  Second, I swear to you I am trying.  Help me; don’t judge me.  And please accept my advance gratitude for whatever advice or experiences you are willing to share.