Autism Moves Out

The IEP.  It’s a term that will make most people scratch their head.  Is it a rock band?  Another awful group dance like the Macarena?  A new car in the Ford lineup?  No, it’s an “Individual Education Plan” and is the only legally sanctioned torture device designed especially for use on parents.

You never, ever, ever forget your first time.  CJ was getting ready to start kindergarten.  He had been in a PreK class for “varying exceptionalities,” which is a fancy way of saying “really different and we have a bad feeling.”  I, the parent, receive paperwork in the mail.  A meeting has been scheduled on the matter of CJ Williams.  I’m not sure if it’s an invitation or a royal summons.  Still…it’s all about helping CJ find the right combination of people and environment so that he can learn, right?  Maybe it’ll sort of be like being called to the principal’s office, except no one’s done anything wrong…exactly.  We’ll have a nice discussion and sort things out.

So I dutifully took time off of work to show up for the meeting at the school.  I’m welcomed and escorted to a conference room.  Inside, there is a social worker, a guidance counselor, the ESE teacher, a regular teacher, a speech therapist, an occupational therapist, a staffing specialist and several others.  Me and 7 to 10 other people (I can’t remember exactly, sort of like you don’t remember exactly how many cannons are firing at you as you leave your foxhole trench).   They are kind.  They are professional.  They don’t know you.  Some have children.  Some don’t.  They have done this many times before.  They go around the room, and one by one, these nice caring people tell you in no uncertain terms how they have tested your child and compiled a list of everything he “can’t” do.  He can’t do X.  He can’t do Y.  Every “can’t” is the sound of a door slamming shut.  A body blow.  Now I know how the woman being stoned at the gates of village felt (emotionally speaking, of course).

The early meetings are always the biggies, too.  Everything is still completely new.  You walk into a meeting with a rough idea of how your world works and what your hopes for the future of your child are, and you leave with something else.  The amount of mental and emotional processing that goes on in the head of parent after an IEP meeting, if harnessed, could power a city block for a week.  Theoretically, they are throwing you a lifeline, but it feels like a funeral.  After the shock wears off, you cry, you flail, you rage, you curl up, you reject, you bargain, you pray.  What the hell do these people know?  They’re just guessing, every child is different.  Where’s the door?  Where’s the window?  Where’s the way out of this new reality?  How do I even begin to tell anyone this?  How do I go about inflicting this on anyone else who loves CJ?  Who am I kidding?  These people have experience.  They know what they are seeing.  It’s 10 of them and 1 of me.  What do I know?  God, how am I going to make this work?  God, help me.

This is how it goes.

As you get more experienced at this, you begin to build a shell.  You realize that there are easy meetings where there are no conflicts, no new “can’ts,” few people and you are done quickly.  Then there are the hard meetings.  Often, there’s a conflict even before you walk into the room.  You go in wanting something they don’t want to give, or rejecting something they insist is right and necessary.  There are several ways to feel like a jerk here.  You can be a jerk by refusing their wise counsel, experience and advice, or you can be a jerk by demanding something your child needs that might inconvenience the team, make the days awkward, or consume resources they want applied elsewhere.  It took me a while to start believing that my expertise as CJ’s mom, my common sense, powers of observation and time-in-grade in the trenches of daily life were a skill set just as valid as having a Ph.D or 20 years of educator experience.  It took me a while to learn to both respect the team’s skills and my own equally.

Because, see…the first thing no one tells you is that you are actually a member of the team.  (If you are a parent and you’ve read this far, I can’t stress enough…if you take only one thing away from this blog, make it this.)  The other team members can’t just do whatever they want. You have a vote.  You can make requests.  You can veto things.  They can’t just decide to take things away.  While you can’t control the show, you do have leverage, and in a room where it’s a ratio of 8:1 or higher, you need to learn how to use it.

There are what I like to call “Red Siren Words”.  These words are your leverage.  They have power.  They  set off sirens in heads of the professional people in the room during an IEP.  Use them and everyone tends to sit up and get VERY nervous (think “lawsuit” here).  These RSW’s are precise phrases which cue everyone to the codified requirements that schools and teams are required to comply with in the best interests of your child.  Without them, the team is left fairly free to craft a plan to fit their own agenda, be it your child’s best interest, the school budget, or someone’s sabbatical plans.  But use an RSW and instantly everyone in the room understands that a set of expectations has been invoked, that the parent is aware that he or she has the right to expect certain things, and that consequences could result from ignoring this.

Let’s try a few.

“Least restrictive environment.”  This means that the school is required to keep your child with typical kids for as much of the day as possible.  If you are fighting to find a place for all those painfully learned life or social skills to take root and be exercised, rather than have your child restricted to a single room with limited exposure to a neurotypical environment, you might want to trot this phrase out.

“Where’s the data?  Show me the data.”   If you are proposing to make a change in my child’s IEP (usually regarding services they are proposing to stop), I am going to politely demand the data to back up your proposal.   Use this RSW to force the distinction between supported facts about your child vs their educated opinion.

Of course, the down side is that it then becomes adversarial; you against however many other people are in the room.  It’s a lovely feeling.  If you are naturally assertive, you may have to rein yourself in.  If you’re a conflict avoider, you may need to plan to throw up in the bushes outside the school afterwards.  I’ve been lucky.  Most of the time, I’ve worked things out.  But not everyone has been as fortunate as we were.  I know more people who have taken advocates or even attorneys to the meetings with them than people who have not.

All that said, you do have a voice, but you don’t have complete control.  CJ is now 17.  We had our latest meeting last week.  It was one of those meetings where everyone had to come.  We were changing a service…taking away CJ’s occupational therapy.  UGH.  Luckily, I knew most of them and we were all in the know ahead of time.  We all knew each other and knew the drill.  (I did wonder what they would say if I suddenly decided to pitch a fit in the middle of the meeting about taking away CJ’s OT.­­) We go through the meeting and get to the part about removing OT, and they say, “So you agree with this?”  I say, “No.”  Dead silence.  I then say that I don’t agree, but I guess it doesn’t really matter.  I say that I wish that they would continue and it would make a difference, but I don’t really have a choice.  (I did have a choice and could have made a scene, but it wouldn’t make a difference and wouldn’t really fix anything.)

I did remind them of what we are all told.  I reminded them about the “If Onlys.”  If only…if only we had done more therapy…if only we had done different therapy…if only we had tried this diet or that diet…if only, if only, if only.  Whenever you stop a therapy, you re-introduce the “If Onlys.”

But really…If only…If only what??  He would be better?  He would be cured?  They all kind of looked at me and nodded.  I realize almost every time I am in one of these meetings that they forget.  They are these wonderful people doing their jobs and this is our child.  They are telling you all the ways they are “helping.”  But all you can hear is all the things your child can’t do and how your child doesn’t and may never measure up.

When you recover from feeling like you were kicked when you were down, you wonder why they don’t serve drinks at these things.  Really.

I actually said it out loud this time.  They all thought it was a good idea.