May 25, 2007

Acronym Planet

Originally uploaded by Citizen Rob.
Schuyler had her last IEP meeting this week, which was also her final week of school. (We're celebrating later today with some Father/Daughter Age Inappropriate Pirates & Monsters Movie Time. Don't judge me, jealous haters.)

The IEP, or Individualized Education Program, is part of the implementation of the Individuals with Disabilities Education Act (IDEA), which we Shepherds of the Broken use, along with the Americans with Disabilities Act (ADA), to bully the rest of the world into helping our kids get an appropriate education and generally not get swept under the rug. The IEP is the plan by which parents, teachers and therapists decide on the course of a student's school studies.

Here's what the government says about the IEP:

Each public school child who receives special education and related services must have an Individualized Education Program (IEP). Each IEP must be designed for one student and must be a truly individualized document. The IEP creates an opportunity for teachers, parents, school administrators, related services personnel, and students (when appropriate) to work together to improve educational results for children with disabilities. The IEP is the cornerstone of a quality education for each child with a disability.

To create an effective IEP, parents, teachers, other school staff -- and often the student -- must come together to look closely at the student's unique needs. These individuals pool knowledge, experience and commitment to design an educational program that will help the student be involved in, and progress in, the general curriculum. The IEP guides the delivery of special education supports and services for the student with a disability. Without a doubt, writing -- and implementing -- an effective IEP requires teamwork.

What that little block of government-issue cheese doesn't tell you is that for many parents of a broken kid, or perhaps even most parents, the IEP meeting itself is usually a gigantic, frustrating pain in the ass.

We've been lucky since coming to Plano. Our IEP meetings are generally a breeze now, although we certainly paid our dues back in Manor (the district near Austin where she attended school before) and in New Haven. I still remember the meeting where Schuyler's speech therapist in Manor finally admitted that the reason she wasn't recommending sign language was that she didn't know it herself and didn't think she had time to take a class. That was swell.

The Plano public schools' special education programs are among the best in the country, and so for the first time we've been able to relax a little and allow her teachers to take the lead. You have no idea what a relief that is, unless you have a broken child yourself, in which case you know EXACTLY what I'm talking about. IDEA provides for something known in special needs circles as "FAPE", or Free Appropriate Public Education. It's the part of the law that sets the minimum standard for special education in public schools. In some cases it's a life saver; in others, a mockery.

(If you want to put your broken kid in a neurotypical private school, you're on your own. Private schools do not have to accept students with special needs, and many choose not to. The ones that do typically make the parents of the child responsible for the cost of additional resources. On the other hand, your broken child is free to talk about Jesus, so there you go.)

What FAPE doesn't guarantee is the best possible special education. It provides for an "appropriate education", which many courts have defined as "access to an education" or a "basic floor of educational opportunity". Parents who go to court seeking additional services for their kid are told never to use the terms "best" or "maximizing potential" during legal proceedings. Parents have to educate themselves on what their kids need, and they need to find the programs that serve their kids the best. The idea of moving to a whole new city in order to put Schuyler in a particular school district struck some parents as an extreme move on our part, but to other parents of a broken child, it made perfect sense.

Plano was worth it, and continues to be worth it, but the thing is, it's not just because the teachers and specialists are good. Schuyler's team is exactly right for her for one simple reason. With a very few exceptions, they almost never tell us what she CAN'T do. They assume we already know that, and they're right. They set goals for Schuyler, they let us know when she's succeeding and when she's falling short, but they never set boundaries and they never accept limitations for her.

They get her. I suspect they get them all.

At her last meeting, her team pushed hard for a cognitive evaluation, a school-mandated three-year assessment of her abilities that we originally resisted when she was in Manor. I didn't trust her old school team in Manor, not with a test like that. Such a test is very difficult to administer to a non-verbal subject, and very subjective, so it requires an expert test administrator who can make appropriate accommodations for a nonverbal subject. This is the first time we've trusted the school to administer such a test correctly. Even so, I had and continue to have my reservations.

At the end, there's a number, and our fear was that it would be a number that would follow her along forever. Schuyler didn't do poorly on the test, but she had problems. I was happy to see that her team did recognize (in the actual written report itself) that her score probably represented the low end of her actual capabilities. It was nice to have confirmation that I'm not just being Defensive Denial Dad when I mention her aversion to evaluations. They see it, too. Schuyler can be defiant in evaluations, perhaps partly in sport but mostly because she becomes extremely impatient. She likes to give the answer after merely glancing at the possibilities, and the problem only gets worse as the test drags on. It's a problem that they identified at this last meeting, and one that we're going to have to work on.

The possibility was brought up that she might be ADD. Attention Deficit Disorder often accompanies cerebral palsy, which is related in many ways to Schuyler's polymicrogyria. Because of her malformed brain and the fact that no one knows exactly how it functions at the high level that it does, medications that affect brain chemistry are probably out of the question. But ADD was mentioned only as a possibility, and not one that they even feel compelled to test her for yet, so it's probably a little early to freak out. Even so, Julie and I were both surprisingly unmoved when they mentioned it.

With everything that our daughter has been through (and will likely go through in the future) with polymicrogyria, Attention Deficit Disorder isn't very scary. Compared to Schuyler's monster, it's a hamster.


Cuinn said...

When my son was diagnosed with autism at 2 1/2, the school district did an iq test on him. I argued with them, and pointed out the flaws of a (then) non-verbal child taking a test that measured iq based on his responses to questions he couldn't understand. How can a child point out which vehicle flies (from a choice of four) if he's never had a conversation with anyone about what flying is?


Now he's four, and doing amazingly well with his in-home therapy and preschool, and he's talking, and his brilliance (which I knew he had) is obvious to everyone involved in his school and his therapy. His test score (74, I recall, just above mental retardation) gets mentioned in his IEPs, but only when new people are there, and only for his teachers to point out how very wrong that score is. I don't even have to mention it. :)

So don't worry too much about scores. The people who work with her will see her potential, and they will balance out the number on the page.

Anonymous said...

IEP meetings frustrate the everloving hell out of me. Our particular school acts like they don't have a clue as to what might help an 11 yr old with Asperger's Syndrome, in spite of the fact that I know he's not the only Aspie kid there. We began the every-3-year testing when Trev was in kindergarten and I had my reservations as well. He was limited verbally and easily frustrated (typical Aspie kid in that regard) and throughout the testing would meltdown in big ways. I questioned the accuracy of a test that he minimally participated in but ironically it didn't seem to make a difference at all in his education. I thought that perhaps it was because we had a cruddy school but I'm not sure that's all of it now.
At any rate, I share your wariness in dealing with tests, etc and just want to say that regardless of what the results are, Schuyler (like my Trev) will always be capable of more than she's given credit for because the world at large isn't geared to understand them fully. They do the best they can.

Anonymous said...

Hey Rob. I apologize if you've said this before and I didn't follow, but I was wondering if the plan for Schuyler is that she'll continue in her BBoW class each year through school as she get's older, or is the plan for her to go into a neurotypical kids class at some point? Or is there no plan, just playing it by ear based on her development?

Anonymous said...

As a girl with ADD, I can tell you that it's nothing to worry about with Schuyler. It means taking breaks when you study and learning to think around the rest of the world...because they don't get things the way you do. I think Schuyler's got that mastered already. I'm not saying it won't take some work, but come on. Your daughter? She's got mad "out of the box" thinking skills.

Robert Hudson said...

It's been a flexible plan, but it looks like she'll get at least two more years of Box Class before she transitions 100% to mainstream classes. The thing is, this class is a charter class, she was in the very first group of kids, and so as they go along, they adjust the plan accordingly.

They're going to keep expanding the class through the upper age levels, so they'll keep Schuyler and her classmates in the class until they are ready. At this point, it's still such a new educational concept that no one is entirely sure when that will be.

Robert Hudson said...

As a girl with ADD, I can tell you that it's nothing to worry about with Schuyler.

Yeah, we're not overly concerned. Besides, one of her teachers has ADD kids, and her main teacher (and miracle worker) is actually ADD herself.

Kelly said...

On the opposite end of the spectrum, we wanted to have the IQ done to prove that our child needed the services we wanted for her. People would look at her Dx of "intractible epilepsy" and totally misjudge the kind of disability she deals with. "Seizures? Oh that's not so bad!" Yeah, right. Try a rare seizure disorder that takes a normal child and rips every shred of normality from them. Piece by piece.

I knew that the IQ test was our way of saying, "See? See? It's not as benign as you think."

The score came back 40.

Because of that one test, the whole state does backflips for us now. On one hand, it seems wrong to judge so much by a single test (not that we haven't had TONS more---they just only like THAT one), but on the other, it is a simple way to prove what we've been screaming for years. And only since then, have we been able to obtain services to aid in her quality of life.

My child is not a "number," but she IS in need, and I'll take any label they want to stick her with to get what will help her. She doesn't know or care or understand labelling anyway. Their words don't hurt, but their lack of motivation did.

Anonymous said...

I just wrote a whole rant about how much I hate some of my staffing teams (I work in various schools in one district) but then I decided that you don't need to read it because you've already been there. I've wanted to strangle my coworkers so many times for justifying to parents why they are taking the easy way out. Why be a shepard if you don't want to help the flock?

I am so happy that Schuyler's team is on top of it and dedicated to their students. I love reading about them when I have bad days here at work- it makes me want to move down to Plano and work with them instead of some of the lazy jerks I work with.

Annie D said...

Oh, the dreaded IEP. Been to maybe 4 already, for my 4 year old.
(If any of you reading this are in an IEP fight my one bit of advice - bring a tape recorder!!)

I have been told the same thing about the testing- it doesn't truly represent my son because he was non-verbal. (He can say a few words now like Mom, Dad, That, Elliot) I look at it as an innacuracy that isn't relevent to Liam, but as a positive in that it helped him to get into the wonderful preschool program he is flourishing in now.

I have a question too for Rob.. Does Schuyler get occupational or physical therapy for her dysarthria ? Is she still in speech therapy ?

Jodi said...

Ahhh..the dreaded IEP. Ours is next week. My son is 16 and we've turned down an IQ test every time the subject comes up. I know it would never tell us anything we don't already know..and most likely would lower the teacher's expectations of what he is capable of. You are great advocates for Schuyler.

Lynanne said...

My autistic son did poorly on an IQ test when he was 5 or 6 even though the test was administered by highly qualified specialists. At the time, he was minimally verbal. He repeated the test last summer (age 8) and did much better (though he still had problems with the verbal section of the test). So well, in fact, that he was placed in a talented and gifted program. Obviously, IQ scores don’t increase appreciably over time so what we likely saw was increased maturity and ability to adapt to verbal limitations.

It's wonderful that they recognized that Schuyler didn't perform up to her potential. From what I've read, she sounds like a very bright child. What might manifest as ADD could actually be an inability (at this point) to communicate as quickly as her brain is working. Plus, she works twice as hard to answer questions. Whereas a NT person can just blurt out the answer, Schuyler must use do so much more – she uses cognitive and visual skills to find the words on her box of words, motor skills to push the buttons, mental planning to make sure the buttons are pressed in the right order so that the response makes sense and on and on. For a short task, this might not be much of a strain, but IQ assessments take a significant amount of time. That’s a lot to ask of a child her age – it’s no wonder she appeared distracted and impatient.

Anonymous said...

My son is 15 years old and had ADD. He's had an IEP since third grade. I agree with you that it can be a frustrating process and it takes an involved parent to make it work the way it should (or at least close to should). It's just been in the last couple of years that I feel we're all on the same page at these sessions. And - even though he hates it - I think it really helped to include him in the process. They just really started this in Middle school and it's made a big difference in that I am no longer fighting for what I think will help. He's there to tell us if an idea will work or not.

britmummybites said...

Over in the UK we have statements of special educational needs. Which basically tells you what the child's area of concerns are, how to help them and what resources. The school's do IEP's as well but these are more like targets for each term.
Normally a child has an annual review once a year, where they talk about how the child is doing and if any thing needs to be ammended to the statement.
Getting a statement is becoming extremely hard as the UK has become all about "inclusion". Getting the statement written correctly is a pain in the jacksie. As is getting the right school named on there if you want your child to go to special.
So for my eldest who is now 10 getting a statement was easy, however she going to need a secondary school (special) for sept 09 and i'm dreading the battle that i'm going to have.
Really think we may have to move, but am hearing horror stories about other LEA'S.
My LEA has gotten worse since my eldest was statemented and i'm going to have an up hill getting my youngest one statemented.
He is 3 years and 7 months and has only had 12 group sessions of speech therapy. He got referred for speech when he was 2 (minumin age here).
Sorry for rambling.

Anonymous said...

That picture of Schuyler is perfect for this post. "Labels? Acronyms? Feck off, haters. I have not the time, nor the interest in your labels. Bring on the PIRATES!"

Anonymous said...

You are doing a great job, Rob. The IEP is an extremely important facet. Keep on top on things as Schuyler gets to middle and high schools. We found that a lot of the teachers at that level didn't want to be bothered. Six to seven different teachers per semester to try to work with can be challenging. It gets more complicated the more faculty has to be involved.

Robert Hudson said...

Does Schuyler get occupational or physical therapy for her dysarthria ? Is she still in speech therapy ?

She still gets OT and speech therapy, although (and I'm putting it out here a little since people at her school read this blog, but here it goes) we're not terribly happy with the speech therapist, who is negative about Schuyler that feels familiar, and not in a good way. She has been one of the very few exceptions to the overall crazy high quality of Schuyler's team, and even then, she's not bad, she's just not a superhero like most of the others.

The good news is that Schuyler no longer qualifies for physical therapy because her coordination and ambulatory skills improved to the point that they determined that she no longer needed PT. It was a small milestone, since PT was never her most pressing therapy anyway, but it was still a very good day when they kicked her out!

Her OT is shifting to more detailed work with the PE instructor now. I was shocked at how knowledgable he is, but then, my dad was a coach and so I grew up in the 70s with him and all his dumbass friends. I just mistakenly assumed that all coaches were like that, or that things hadn't changed since then.

Robert Hudson said...

By the way, she dug the pirate movie (I showed her how to spell "Argh!" on the BBoW) , and tomorrow we're going to do a photo shoot for the book that, if it lives up to my expectations, is going to blow everyone's minds. I've got something fun in store!

Annie D said...

My son started out here with a speech therapist that I personally really liked (and still do) but she just wasn't the right fit for Liam.. so we asked to switch. now he has a great great speech therapist who has brought Liam from non-verbal to actually saying some recognizable words and many approximations in less time than he saw the other therapist for.
If you're not really happy with her speech therapist.. maybe you could ask for another one ? there is no reason you would need to be mean about it.
Awesome Schuyler is done with PT !! I was hoping my son would be discharged from PT as well but alas, they just upped him from 2x week to 3x week. Well, maybe in a few years. What is important is they get the help, right ?

In my son's school district the Speech therapist does oral motor work for dysarthria.. some places the OT does it, some places ST and OT do this. My son started a new oral motor program for his dysarthria called the Beckman method. Have yall heard this or tried it with Schuyler ?

We have seen a lot of progress since starting this. I asked my son's therapist to teach me how to do the exercises too so we can double his progress (I do it at home with him everyday or try to) it consists of putting your hands (with some flavored gloves) in the child's mouth and doing different movements.. it helps for building up muscle tone for speech, drooling, better eating, etc etc etc.
well anyway, hopefully this will help someone reading this... if not, oh well.. :O)

Annie D said...

I also wanted to say too .. about the possible ADD -- someone brought up a good point that she may just be bored. Ask the teachers if she seems to be more "hyper" or whatever behavior they were seeing as ADD during a certain subject. When I was younger I was actually bored to TEARS in math class.. maybe Schuyler is getting bored as well and may need to be challenged more. Anyway.. I agree meds shouldn't be needed.. It is my belief that many ADD kids are over medicated and what may be needed is alternatives in the school environment such as more frequent shorter outside time, or just looking at the individual and trying to meet their needs rather than just dosing them up on drugs! adjustments to the school environment and alternatives should be tried first, then drugs as the last resort. too often drugs are grabbed at as the quick fix without an effort to help the child in a way that doesn't alter their brain chemistry.. but thats a whole nother thang ! :P

misdee said...

oh i feel like i am at home reading about IEP's. ok, thats sounds mad i know, but have read many of them recently, and am preparing for new ones to start with middle daughter in september. eldest has some learning differculties and sees SENCo daily at school for small group work. so am right at home.

We didnt like physio either. middle daughter is too flexiable and causing injuries, they gave us exercises to do like walking on a low wall to gain balence. yes all well and good, she falls off, wont tell us if it hurts hmmmm.

We have a full week of speech therepy starting tuesday, which i dread, but middle daughter loves, and gives me 30mins to catch up on reading and diary shuffling.

Goodness i am ranting on your blog, how rude of me.

ADd, if you arent concerned thats good. its workable, if you know what i mean. hamster is about right. theres that feeling of 'oh yeah we can handle that, its small'.

Summer said...

As a preschool special education teacher I can tell you that not many of the teachers that I work with are in favor of standardized testing for children with special needs. None of the children that I teach can possibly be measured or quantified on a single test or in a number value. The only reason I do standardized testing rather than basing a child's progress completely off of the data collected from working with the child on goals is that it is required for placement in a school age program where I teach and for compliance with policies like No Child Left Behind. Sometimes we are fighting like crazy to provide the absolute best services we can within the constraints of our districts, our states, our budgets, and our laws. And then, well, some teachers should not be teachers - they should be research subjects for laboratory testing, or the person who sits and counts how many licks it takes to get to the center of a tootsie pop, or the person who cleans the preschool bathroom. :)

Anonymous said...

First, as bad as they are, an IEP can be your only friend at times, good for you for sticking up for your kid when so many parents are passive.

Second, we have a child with a "number" (158) that made his life miserable all through public school. With that number he was expected to achieve, however he couldn't read and his writing was low. Only two teachers throughout his 'career' allowed him verbal testing -where he soared. Now out of school, he is a very successful adult, married and extremely happy...but still not reading.

Another child of ours had her number (172)but also diagnosed with "severe ADD!!!" oh my! We were pressured by many to drug her and to advance her grade level; we did neither. Instead we challenged her by bringing her level work into the age appropriate grade and made sure she had plenty of positive opportunities for stimulation. She is currently in her Senior year at a University, and doing just fine as a young adult. (Now diagnosed as "type A" and "over achiever"...go figure)

My point? Sometime mom and dad know more than the numbers. Go with your gut. If *you* feel it's right to do this or that, drugs -no drugs, speech -no speech, then do go with it. Never allow anyone to pressure you...That's the best tool of the ADA, YOU have the power if you know what your rights are and demand to do what you choose.

God bless that little girl. SHe has stolen my heart.

Shannon said...

Rob, Julie and Schuyler,
I'm so happy for Schuyler and the praise that Plano offers to her (and you, the parents, I imagine) IEP's can be frustrating, yes. Glad you are in a really great School System. And as one of your readers said....bring a recorder. Not only is it hard to digest what all is being said, you have backup when the school system fails to follow through on promises.
Have a great weekend ya'll:)
Shannon in Austin

Anonymous said...

My daughter had an IQ test done, and the tester didn't know sign language so the whole thing was kind of a joke. Her IQ came out as 25 which may or may not be close, who knows? IQ scores don't really tell you how your kid will do in life anyway.
As for the speech therapist not knowing sign language, sounds familiar. We were told by the school board, special needs department that we were limiting our daughter by encouraging her to learn sign language.
It's so nice to hear that your daughter is doing well and she's lucky she has her parents fighting for her.

Anonymous said...

As a parent of a child the system tried to slap that ADD label on, I just want to say, use the utmost caution.

I never allowed them to do that to my son. Instead, I MADE them do their jobs as principals and instructors, and when it finally got to the point where my son was shutting down in the establiment he was in, I moved him into a settling that was better able to keep up with his intelligence. See, that was the problem all along...he's TOO smart! (As the only test I EVER allowed them to do proved.) Thus, at the ever so slow pace the classrooms move these days, he was truely bored.

The move into the new place went fabulous! He could work at his own pace, so he FLEW right along. They were amazed with how fast my son got through the program he was in.

He's now 18 and ready to join the work force, and I am SO proud of him!

Rebecca said...

Hi. I just wanted to say that we too are planning to move out of the district just for our daughter. With one more year of preschool left, my daughter's therapists are already talking about her transfering to a contained school in the district. I don't know that she would be happy in a fully inclusive program, but I atleast want her in a building with nuerotypical children! Glad you guys have a good IEP team!

Lindsay said...

Thanks for being an advocate for your kids. I have seen way too many IEP meetings go 5 minutes, consisting of just signing the paperwork. As a "regular-ed" teacher, it is incredibly hard to make the accomodations needed for all of my kids, but that isn't an excuse not to try. Keep up the accountability- too many of us will lose track, even though we mean well.

Dawn said...

The comment on private schools made me freakin'laugh my ass off! as for ADD didnt you know we ALL have it..LOL;) they never tell you they arent stimulating your kid enough though.. do they? it really can be a "hampster"... I would really go 4 the sign language piece BUT privately taught thru an assoc. of some sort ~ for HER not school (@this time) sounds like an adventure w/new friends around the corner... Glad you are all doing well.

Dawn said...

PS that picture is SOOOO great ~ LOVE IT !!!!!!!!!!!!!!!!!!!!!!!!

Anonymous said...

A lot of my family members are ADD at varying levels. (Hub and I come from big families and ADD & dyslexia run in both families). For most of my neices & nephews, whether to medicate them or not boils down to impulse control. If they can't keep themself from swallowing keys and jumping out of windows, meds can help a lot. But for most ADD stuff, there's a lot you can do with OT and different styles of education.

Boredom is a tough one -- I was always bored to tears by math, because I was so bad at it, and also bored by reading, because I was so good at it.

Billie said...

I lead a double life as a school psychologist, and as a "shepherd of the broken."

In my role as a SP, I have witnessed first hand how much value and emphasis that teachers (in the district where I work) put on that IQ score.

Because of what I have seen, I would be extremely hesitant about allowing anyone to give an IQ test to my girls, particularly to Eden who is hearing impaired, and physically impaired.

Even IF we found someone qualified to do the testing...someone who understood what the numbers really mean, I have no faith in the rest of the school staff to interpret the the results correctly.

I feel like it would be a disservice to Eden.

Anyhoo, I thought your post was really interesting, and I am glad to hear that you are in a place where you are able to be a part of the team, and feel comfortable with the services that are being provided for Schuyler. It sounds like you know just how lucky you are and I'm jealous.

Maybe I should come work in Plano. My job would be more rewarding and I could get better services for my kids. Double win!

Anonymous said...

Thank you so much for sharing this entry. I'm studying right now to be a school psychologist and am no well becoming well versed in the strange language of acronym's I'll be speaking in every day. What I love about this entry is reading a parent's view of the circus that is psychoeducational evaluation.

I can also tell you to take any numbers you're given with a grain of salt. These tests are highly unreliable with nonverbal kids (as you know, of course) and you should never rely on one measure as Truth. I'm only a year into my graduate program and this has already been made obvious to us.

I know this is an old entry, but I've just discovered your blog, and I'm pouring through it with the eyes of someone who a) wants to be a parent in a few years and b) wants to spend their life working with broken kids. I'm finding it incredibly valuable on both fronts. Thank you!