The IEP Meme

My wonderful bloggy buddy Karen over at Solodialogue put up a post earlier this week asking a few of us autism moms what sorts of accomodations and services our kids receive.  Her idea is that if several of us share what we get, what we don’t get, what works, and what doesn’t, it might be helpful to her, and perhaps others who may read it.  Because I adore Karen, I readily agreed to post my own experiences about all of this stuff.  But, for the record, I think it is completely ridiculous that Karen asked me because Karen has inspired and helped me SO MUCH when it comes to this whole IEP mess, I feel I cannot offer her anything worthwhile in comparison.  However, she asked, and she shall receive.

Before I get into anything here, though, let me preface this by giving you some background, so you’ll know where I’m coming from.

Ryan got diagnosed late, at age 6.  He slipped through A LOT of cracks, and I didn’t even begin dealing with the school district/child study team/IEP bullshit until halfway through his Kindergarten year.  So at this point in time, I have roughly two years of experience at this whole IEP thing.  And honestly, I don’t even count his Kindergarten year as relevant experience because I was so confused and upset I just showed up for the meetings and signed where they told me to.  We’re two years in, and I still feel like a complete novice at this whole thing.

Also.  I am not a tough mom.  I am not tenacious, I am not fierce, and most of the time I feel like I am the LAST person in the world who should be advocating for my son.  I have brains but no balls.  I hate confrontation.  I do my research, and I put up a lot of posturing at these meetings by lugging Ryan’s Never Ending File Of Epic Proportions with me and placing my 147-page copy of our state’s special education code on the table in plain sight, but I don’t really fight.  My adversaries know I’m not dumb, but I think they’ve also figured out that I’m not real demanding, and being aggressive is far outside of my nature.

Finally, I like Ryan’s teacher.  I really do.  It took me well over a year, but I have come to the realization that she has a really good grip on my son and his issues.  Given my circumstances, I feel I just have to trust her.  I can’t be at school all the time checking up on things.  I just can’t be.  So the following list of accomodations/services may not be 100% complete or accurate because his teacher has been known to go above and beyond his IEP and try different things if she feels they may be helpful.  I’m grateful for this because I am not satisfied with Ryan’s IEP.  But to be perfectly honest, I doubt if I’ll ever be satisfied.

It’s important to note that Ryan is in a self-contained special ed classroom most of the day with one teacher and two classroom aides.  It is not an autism-specific class, but he’s not the only autie (diagnosed or otherwise) in the class.

OK.  Here it is.

TOOLS AND DEVICES:

• Disc-O-Seat     This is a soft round rubber disc that is placed on the seat of Ryan’s chair for him to sit on.  It is supposed to help him stay calm.  According to his teacher, he hates it and refuses to use it.  I’m guessing it’s either a distraction or provides some sort of negative sensory input.  I hadn’t realized it until I was looking over Ryan’s current IEP in preparation for this post, but it’s not even written in there anymore.  My feeling about this is whatever.  If Ryan doesn’t care, then neither do I.  Back in Kindergarten we tried giving him one of those inflatable exercise balls to sit on so he could bounce while he did his work.  He had it less than a week and poked a hole in it with a pencil, so that was the end of that.  Ryan likes bean bag chairs, and he has one in his classroom that he uses often, but I don’t have that written into his IEP.
• Gum     Like many of our kids, Ryan is a sensory avoider in some ways and a sensory seeker in others.  He craves oral stimulation and is CONSTANTLY putting things in his mouth.  It doesn’t matter what.  Rubber bands, paperclips, Lego pieces, you name it.  One time I caught him with a thumb tack in his mouth, and one time (that I know of) he swallowed a plastic button.  If he doesn’t have an object to put in his mouth, he’ll chew on his fingernails.  Or his shirt.  He’s had edible reinforcers written into his IEP from the get-go, at the suggestion of his teachers.  Gum satisfies his need for oral sensory input so he can focus on other things, like math, and not punching other kids.  At some point it was suggested to me that we might try chew toys for him.  Anyone who owns a German shepherd knows what I’m talking about here, except these chew toys are smaller and fit on the eraser end of a pencil.  (I do not own a single pencil that still has its eraser, by the way.)   Because writing is such a struggle for Ryan, I ruled this out because it would affect the balance of the pencil and I didn’t want to make writing any harder for him than it already is.
• Headphones     This was pretty much a total bust.  We initially wrote noise-blocking headphones into his IEP because fire drills back in Kindergarten would cause him to completely melt down and he would be incapable of doing anything the entire rest of the day.  But Ryan has an ear thing.   He doesn’t like anything touching his ears.  Remember how your mom used to scrub behind your ears when you were a kid?  FORGETABOUTIT!!  Fortunately, Ryan handles fire drills a lot better now, although they still cause him a lot of anxiety.
• Daily Behavior Chart     Ryan’s teacher has a big chart hanging in the classroom with each child’s name and three cards underneath (green, yellow, and red).  Green means good behavior, yellow means meh, and red means this day totally tanked.  The idea behind this is to teach the children self-regulation.  This is actually written into Ryan’s IEP, although every kid in the class is subjected to this system.  I get a daily log sent home with whatever color Ryan ended the day on.  And that’s pretty much all I know about his day.  I question the effectiveness of this system because there have been plenty of times when Ryan has descended all the way down to red and basically said screw it and didn’t even try to earn his way back to green.  Also, in his mind, red = bad, and this child has enough self-esteem issues already, we really don’t need to be adding to them in my opinion.

SERVICES

• Occupational Therapy     Ryan receives small-group OT (with one or two other students from his class) for 40 minutes every other week.  I had to request an OT evaluation to get this started.  If I hadn’t requested it, he wouldn’t be getting it.  His occupational therapist also does a lesson for the entire class roughly once every other week.
• Speech Therapy     Yeah.  We just did a speech evaluation on Ryan two months ago.  Again, at my request.  Ryan scored in the low-average range.  Just high enough not to qualify for services, so he’s not getting individual speech.  The speech therapist does come into his class roughly every other week to do a general language or social skills lesson for the entire group.
• Counseling     Ryan meets with the school counselor for 40 minutes every other week.  I have this written into his IEP.  I have no idea what they do or what they talk about because I have never once gotten any feedback from the counselor.
• Social Skills     Our case manager from the child study team goes into the classroom periodically and also pulls the kids out in small groups periodically to work on social skills.  While the terms of service are not specifically spelled out, I have specific social skills goals written into Ryan’s IEP, so I guess this is their way of trying to help him meet those goals.  Also, the school counselor just started an optional social skills group that meets for 40 minutes, once per week, for six weeks.  Again, this is not specifically written into his IEP, but it was offered to us, so I signed him up.
• One-to-One Aide     This is a work in progress, and I will have to get back to you on this one.  Ryan currently does not have a dedicated one-to-one.  However, at the start of the 3rd marking period (February 1st), Ryan is going to begin mainstreaming in a general ed classroom for reading.  One of his current special ed classroom aides will accompany him to the general ed classroom every day for his reading lesson.  This is written into his IEP.  He will not go to the general ed class alone.  Also, his special ed teacher has absolute discretion over this and can 86 it any day she feels Ryan is out of sorts and can’t handle it.
• Behavior Intervention Plan     Ryan’s current behavior intervention plan isn’t fit for me to wipe my nose on, and I’m being polite here.  It addresses maintaining focus and staying on task.  It doesn’t say a word about curbing aggression and keeping him from klocking other kids.  It’s worthless outside of his classroom.  He needs a behavior intervention plan that addresses his MOST PROBLEMATIC behaviors and that can be applied throughout the entire school.  Ryan’s teacher knows his triggers and knows how to prevent a violent outburst.  These problems never happen in her class, they happen in special area classes and in the lunch room.  My requests to revise his behavior intervention plan have been blown off.  Twice.
• Extra Time and Frequent Breaks     These are both written into Ryan’s IEP.  He’s allowed extra time to complete tasks when needed, and his teacher is really good at accomodating him this way.  He is also allowed breaks, and Ryan is at the point now where he can advocate for himself pretty well in this regard and tell his teacher when he needs one.  Often she will use breaks as a reward.  (Finish your worksheet, then you can go sit in the bean bag chair with a book for five minutes.)  One time, Ryan was freaking out over something and told his teacher he was going to go lock himself in the bathroom.  So she told him he could go into the bathroom (there is no lock on the door) for five minutes, but when she knocked on the door after five minutes he had to come out.  She actually left him in there for about eight minutes because he still wasn’t completely calmed down after five, and when she knocked he came out and was OK.  Frequent breaks may sound like something inconsequential, but imagine how the above scenario would have played out in a general ed classroom with a general ed teacher if it weren’t written into the IEP.
• And A Bunch Of Other Stuff     Which is basically just a list, without any specifics attached, such as small group/individualized instruction, multisensory instruction, rephrase and repeat directions, visual cues, encouragement and praise, teacher and peer modeling, sensory program, positioning program, pencil grips, seat in area of least distraction, blah blah blah.

WHAT RYAN IS NOT GETTING

• ABA     I am on a quest to get this child ABA.  I do not understand why I cannot get evidence-based behavior therapy that is considered Best Practice for kids on the spectrum, but the school has steadfastly refused to provide this for us.  Actually, scratch that.  I DO understand why I can’t get it.  It’s expensive.

So there you have it.  Boy, THIS was a fun post to write.  But if it helps anyone, then I’m glad to do it.

The only thing I would like to add is this: If you can manage it, get your child whatever therapy or help he needs IN ADDITION to what the school provides.  The school is only obligated to address the issues that negatively impact your child’s education.  They are NOT obligated to address anything that is not considered educationally relevant.  The evaluations the school performs are most likely NOT giving you the complete picture.  Running to appointments with private therapists is time consuming and can be extremely costly, depending on which state you live in and what your insurance covers, but if you can manage it, then do it.  And if you can’t (like me), then try not to beat yourself up about it too much.  You’re doing the best you can with what you have.

UPDATE:     To read about Rhonda’s IEP experiences with her 17-year-old son Tommy, click here.

To read about Kelly’s IEP experiences with her young son Ted, click here.

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