Monday, September 20, 2010

You can have Asperger's, just not in my classroom.

My son was accepted into my school system's Science, Technology, Engineering, and Mathematics (STEM) Academy when he went into 6th grade.  We debated long and hard about even applying to the program because in all his elementary school years, he had never had to work very hard to get good grades, and he wasn't particularly successful in general education environments.  (He had a prejudice against stupidity, and there was an awful lot he considered to be stupid in general ed....)  We were, frankly, terrified about sending him to STEM and terrified to send him anywhere else.  He wanted to go, and he was accepted, so we tried our best to transition him into both middle school and STEM.

I think you could pretty much sum up that first year as the most stressful year we've ever had -- and we've had some doozies!  Most of the stress came because my son wasn't allowed to be disabled in the STEM classroom.  I know, I know, he has Asperger's, a pervasive developmental disorder; there is no part of his life unaffected by it.  Anyway, simply put, there was nowhere else he could go.  He needed the academic rigor available only in the STEM program, he bought into the need to do his work in order to be able to stay there, and he was finally with his academic peers.  But he couldn't have anything special education-related that would "compromise the rigor of STEM."

I've got to tell you that that last statement didn't sit right with me; it was sprung on me at his end-of-5th-grade transition meeting, and I didn't know what to do.  He had to go there.  So I allowed changes to his IEP (notably "except as would compromise the rigor of STEM") that in hindsight, I see I should have fought tooth and nail.  But I was scared, scared to do anything that might cause him to get kicked out of STEM.  More scared when, two days before the start of 6th grade, I learned that he was to have nothing to help him in STEM -- never mind that what he needs help with is social and executive functioning skills.

Every day, my son got home from school at 2:30 p.m.  He got a snack, and he read for 20 - 30 minutes.  While he did that, I unpacked his backpack and got progressively more distressed.  His homework was so unclearWhat, exactly, was he supposed to do?  On which website?  In which book?  How many?  When was it due?  What do you mean, it's in a different class textbook?  We have an extra set of books at home.  But not this one?  That child worked from 3:00 until dinner and from dinner until he finished his homework at 7 or 8 p.m.  Sometimes 9.  And one of us was right there with him, not because he couldn't do the work but because he couldn't stay focused or organized.

And why, when he busted his chops to complete an assignment because he wasn't allowed to have extended due dates so as not to compromise the rigor of STEM was it OK for half his classmates to go in with the assignment incomplete, causing the teacher to push back the due date?  Why?  How our family life suffered as we worked with incomplete information because he had to prove, on a daily basis, that he belonged there.  And I don't even want to talk about what the Science Fair did to us.

So where was Special Education during all of this?  Why was it OK for my son to have these restrictions put on him.  Surely that wasn't legal?!  In early April, after most of the year spent in unabating stress, I sent this message off to a couple of people on his school team:
I think it's interesting that the STEM website states the following: "Are special education students eligible for participation in the STEM program?  Yes, all students are eligible to apply to the STEM Academy. Appropriate accommodations and modifications will be made to address an IEP carrier enrolled in the STEM Academy."  Just an interesting point when compared to the existing attitude.
Well, somehow, some way, my message got forwarded to the Director of Special Education, who sent this to me:  "This was forwarded to me as a concern that you may have. Is there anything we need to discuss?"

Imagine my surprise at that!  So I sent this:
Thank you for your question.  I'll try to explain:

A few days prior to the start of this school year, I was made aware that [my son] was to have *no* accommodations in his STEM classes.  This was news to me, though in hindsight I could see that someone somewhere had broached the subject with his outgoing team at [his elementary school] because I was told at the end of 5th grade that we needed to modify a few of [his] IEP accommodations to incorporate "except as would compromise the rigor of STEM."  (I thought it odd and concerning, but when sprung on me with no prior warning, I determined that we could try.)

As I'm sure you are aware, we've fought long and hard to get [my son] appropriate academic rigor in elementary school.  We couldn't make it happen, in large part because it just doesn't already exist in general education in the elementary grades, and also because we were finally told definitively that "it is not the obligation of the Special Education Department to provide gifted instruction to [my son]; if gifted instruction is otherwise provided, it is [their] obligation to work with it."  (Obviously, I disagree with both these standpoints, as do other school districts, but they are topics for another day.)  The STEM6 program became the last *available* [school system] placement for [my son] that could possibly be appropriate, so we decided to give it a try.

At the start of the school year, as I said, I learned that it was a definite statement -- there were to be no accommodations in STEM.  I wondered about the legality of such a statement and certainly have felt frustrated with the restriction on the implementation of his IEP.  I have also been frustrated on [his] behalf because what he needs in the STEM classroom is help with executive functioning and social skills, *not* with academics.  (Check out his 5th-grade Science MSA results!)  It has appeared all year that the dictate is unbreakable.  [His] Special Education school team has had no success changing it, and I thought that your statement at a recent CACSE meeting that students must be "otherwise capable" to be in the STEM program supported the "no accommodations" rule.

I know that [my son] is the Special Education "test case" in the STEM6 program, but I must say that I don't understand the lack of understanding of, and possible prejudice against, an IEP carrier, especially when the STEM page on [the school system website] clearly states that "appropriate accommodations and modifications will be made to address an IEP carrier enrolled in the STEM Academy."  When I ran across the STEM quote again a couple of weeks ago, I passed it along to [two members of my son's school team] as an "FYI."  I believe that they have [my son's] interests at heart and would be interested in the disparity between the ideal and the real.

So there you have the history of my having sent the original message to [those two members of my son's school team] as a benign "thought you'd like to know" message.  Thanks again for following up.
You'll notice that I didn't ask the Director of Special Education to do anything.  Stupid.  Stupid.  Stupid.  I had her attention.  Of course, if I were the Director of Special Education, I would hope that I would take it upon myself to stop this blatantly illegal denial of a child's FAPE without being asked.  Alas.

Everyone acknowledges that my son has executive functioning issues.  Yet 6th grade came and went, and 7th grade came and went.  And here we are starting the fifth week of 8th grade, and he still can't consistently bring home what he needs or explain the assignments.  Something is always missing.  And though his school team is working on it, what happened to having the IEP ready to implement on Day 1 of school?  Why aren't the supports he needs up and running?  Why can't special ed. get into STEM to see what they need to set up?  Just as someone with certain physical issues needs to have an automatic door opener installed on those big school doors to that he can get into the building and learn, my son needs an "automatic door opener" so that he can independently access that fabulous, rigorous curriculum.

I try really hard not to go down the path of what might have been.  It's painful; I can't change it, and the best I can hope for is to learn from it.  Sometimes, though, I can't help asking myself how much more he could be now if we had appropriately addressed his needs these past several years.  And regretting the answer.
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My friend and I are in similar situations with our sons:  They are both in the middle school STEM Program, hers in 6th grade, mine in 8th, they both have nowhere else to go to get their need for academic rigor met, and they've both had to modify their IEPs in order to stay in the STEM program.  We try to help each other de-stress as best we can, and we're currently trying to advocate for programming for our children and children like them who have both the need for academic rigor as well as the need for special education services -- those who are twice-exceptional (2e).

By ourselves, we've been trying to answer the question about the legality of our children's IEPs having to be changed in order for them to attend the STEM program.  I finally stumbled upon the answer to that, which is, not surprisingly, that no, it's not legal.  Two critical paragraphs from the Office for Civil Rights sum it up:
Participation by a student with a disability in an accelerated class or program generally would be considered part of the regular education or the regular classes referenced in the Section 504 and the IDEA regulations.  Thus, if a qualified student with a disability requires related aids and services to participate in a regular education class or program, then a school cannot deny that student the needed related aids and services in an accelerated class or program.  For example, if a student’s IEP or plan under Section 504 provides for Braille materials in order to participate in the regular education program and she enrolls in an accelerated or advanced history class, then she also must receive Braille materials for that class.  The same would be true for other needed related aids and services such as extended time on tests or the use of a computer to take notes.

Conditioning enrollment in an advanced class or program on the forfeiture of needed special education or related aids and services is also inconsistent with the principle of individualized determinations, which is a key procedural aspect of the IDEA, Section 504 and Title II.  As noted above, under Section 504, the provision of FAPE is based on the student’s individual education needs as determined through specific procedures--generally, an evaluation in accordance with Section 504 requirements.  34 CFR 104.35.  An individualized determination may result in a decision that a qualified student with a disability requires related aids and services for some or all of his regular education classes or his program.  Likewise, the IDEA contains specific procedures for evaluations and for the development of IEPs that require individualized determinations.  See 34 CFR 300.301 through 300.328.  The requirement for individualized determinations is violated when schools ignore the student’s individual needs and automatically deny a qualified student with a disability needed related aids and services in an accelerated class or program.
My friend and I asked for a meeting with the Supervisor of STEM in order to clarify STEM policies regarding having IEP carriers, in general, applying to and enrolled in the program.  As part of the back-and-forths of setting up those meetings -- she won't meet with us together -- she stated:
[W]e do not have “STEM policies regarding having IEP carriers”.  The STEM academies are inclusive rather than exclusive in regards to all students with IEPs,  because each one has an Individual Educational Plan. The STEM teachers make every effort to implement  accommodations for students with IEPs....  I will be glad to meet with you to discuss the STEM instructional curriculum and how it is implemented in the classroom.
What our children face pretty clearly shows that there is a policy.  If that policy is legal, then the STEM website has to clearly warn students and parents that changes will have to be made to the student's IEP.  The decisions to apply to and attend STEM have to be based on accurate information; there is too much at stake.

If, however, the policy is illegal or there is no policy, then the practice of conditioning attendance in the STEM program has to stop, and training has to start.  Special educators trained in Asperger's have to be let into the program immediately so that they can anticipate the needs of the students, make accommodations, train general education staff, and level the playing field for students with AS.

I have to add a caveat here:  My son does get some accommodations in the STEM classroom and throughout his day; however, his IEP is not usually ready to go on the first day of school, and he's tasked with doing the things he has trouble with one way before he's asked to learn how to do them another way later.  In addition, accommodations seem to be in response to a situation rather than to prevent it.  (This year, for example, he seems to have a bit of flexibility with Science due dates.  On one level, that's very comforting.  But what does he need flexibility for?  What support could be in place to prevent the need for that extension?)
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I think of a 2e classroom as a quilt, a planned, coordinated, beautifully patterned quilt that provides full coverage for all who are under it.  The current STEM program is a planned, coordinated, beautifully patterned quilt that provides full coverage for those who fit beneath it.  My son doesn't fit; parts of him are left hanging out in the cold, and we at home are left scrambling to find other ways to keep him warm.

I'm not asking for a 2e classroom.  I want one, but I'm not asking for it at this time.  At this time, I'd like to see a quilt extension that covers my child; it doesn't have to match perfectly, but it mustn't be glaringly obvious that it's a patch job.  I want full coverage.

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