Sunday, October 31, 2010


I have always loved Halloween.  Back when I taught ESL at Penn and at Drexel, I used to buy a bunch of pumpkins every year and teach my students how to carve them.  And I love to have trick-or-treaters come to my door so that I can give them candy.  (OK, mostly, I love this.  The ones who don't dress up but still expect candy in return for their surly, "Trick or treat" -- if they even open their mouths -- really bother me.  I tell them, "No costume, no candy," so they better hurry up and think of something.  After they get over their shock at being denied, the quick-witted ones say, "I'm a teenager."  That gets them a candy bar in the pillowcase.  The slow-witted ones walk off.  And yes, this embarrasses my daughter.)

None of which is the point.  This year, I just don't feel up to it.  My husband is outside with the candy bucket.  (Around here, most people sit in their driveways.  I don't know why.)  And my daughter is going around a friend's neighborhood with the friend's mom.  Of course, my son is playing video games.  He doesn't eat candy -- never has -- and trick-or-treating doesn't interest him -- and never has.  (We used to make him go, but not anymore.)  I just feel blah.

Now, part of this, I know, is because Matthew isn't here.  I just keep thinking about how sad that is.  (Sad isn't the right word, but I'm too blah to find a better one.)  Part of it is because my friend is stressed to the max over her son's schooling situation.  The conditions' having been lifted off their IEPs doesn't mean that all accommodations are yet in place, and until they are, homework is going to continue to be the nightmare that it's been for weeks.  And part of it is because I'm afraid that when the Superintendent talked with the Executive Director of Special Education and Student Services -- as indicated in his follow-up (mostly) form letter -- everything we said was again spun to make it seem that we are unreasonable.  Or lying.  Or disingenuous.  I'm not saying that this is what happened; I'm saying that it's happened in the past, and it wouldn't surprise me at all if it had happened again.  And I find myself discouraged.

I've related this quote recently:  "The devil once offered to sell at auction all his tools save one -- discouragement.  'For,' said he, 'if I have that, I can get along very well without the others.'" (Helen C. White)  I also recently said:  "After 10 years of my son's being in the school system, I can see why the devil would have said that."  After the hope that I had felt a few weeks ago, this hits hard.

Maybe what I should have done was to buy Halloween outfits for Otis and Milo -- maybe devil horns and cape or angel halo and wings?  That might have perked me up.

Thursday, October 28, 2010

She blinded me with silence.

You know that "hurry up and wait" routine people in the military talk about? Special Education could give lessons to the military. We've had 10 years of hurry/wait, flurry/wait, scurry/wait. Every action comes with a timeline.

Unless they don't. Take, for example, my requests that are ignored. I wait a proper amount of time, even send a follow-up, and nothing. Leave me hanging. Leave me unsettled. Leave something unresolved.  Continue the years of bullying and intimidation with silence.

This is happening again right now. You may remember that I met with the Supervisor of STEM on September 28th.  I sent a follow-up question the next day and received an answer on October 7th.  I then sent this email to the Supervisor of STEM, also on October 7th:
Thank you for getting back to me with the answer to my follow-up question.  As I understand it from our meeting plus the response below, children with IEPs in the STEM program may have appropriate accommodations and no modifications, and the appropriateness of accommodations is determined by each individual IEP team.

As I mentioned during our meeting, my research is showing that placing any conditions on the implementation of an IEP for a student in such a program is a denial of FAPE and therefore a violation of IDEA.  I respectfully request that you check into this and provide me with the regulations that show that it isn't so that I can put this to rest.

Again, thank you for both the meeting and the follow-up answer.
Nothing.   No acknowledgment.  No response.

Now, it's true that my friend had an appointment with the Supervisor -- and, surprisingly (not!), the Executive Director of Special Education and Student Services was there when she got there -- a week after I sent the above, and that's when she was told that the conditions would come off all the IEPs of children in STEM.  But I have never been notified by anyone, in any department, of such a decision.  It has been 21 days since I sent the message, 14 days since my friend was told the conditions would come off, and not one word have I heard.

I so badly want to send a follow-up requesting an answer.  I don't think I will as it could only be snarky.  Or perhaps just a final thank you:  "I wanted to take a minute to say, 'Thank you.'  While I have received no official notification of this, I learned through [my friend] that all conditions will come off STEM IEPs.  I appreciate your taking the time to meet with me, and  I'm glad we could work to resolve the situation."

But geez, her responding would have been the right thing, the professional thing, to do, don't you think?

Tuesday, October 19, 2010

Bullies R Us?

One of the things that came of last week's meeting with the Superintendent of Schools was his interest in our children and bullying.   He asked my friend and me whether our children had been bullied.  While I suspect that my son may have been bullied at some time, back then he was pretty much oblivious and likely wouldn't have recognized bullying or been much fazed by it.  My friend's son is pretty well protected by the number of adults around him.

However, as the coordinator for the Autism Spectrum Support Group of Southern Maryland, I told him that I know that other children with ASDs have been bullied.  He asked for their stories, so I put out a request to the Support Group.  I don't know if anyone will respond, but I hope people take advantage of this opportunity of the Superintendent's interest.

The above got me thinking.  While my son doesn't appear to have been the victim of peer bullying, I know for sure that I (on my son's behalf) have been bullied by school teams during our 10 years in the school system.  Does that count?  Does the Superintendent want to know that I have been put off, put down, insulted, ignored, guilt-tripped, intimidated, and threatened by his staff and administration?

Sunday, October 17, 2010

We told him...

Just this past week, my friend and I had a meeting with the Superintendent of Schools.  (He had asked for the meeting; he said that he wanted to hear our stories.)  So we made the appointment and we fretted over what to say and how to say it.  And each time we got a new piece of information on the STEM practice of conditioning our children's IEPs or had another straw drop on the camel's back at school, the focus of our talk shifted.  In the end, we just told him our stories.

We told him...

That we were grateful for the meeting and appreciated his time.  I was reminded of one of my favorite quotes:  "The devil once offered to sell at auction all his tools save one -- discouragement.  'For,' said he, 'if I have that, I can get along very well without the others.'" (Helen C. White)  After 10 years of my son's being in the school system, I can see why the devil would have said that.  The Superintendent's having asked for this meeting gave me hope.

We told him...

That General Education and the Special Education staff are lovely, sincere, dedicated, patient, and kind.  The Special Education staff can be great at what they do, especially remediating academics.  (That doesn't happen to be what our kids need, but they're good at it.)  The two Autism Specialists are wonderful; they "get" our children, and we're very grateful that they're here.  Over the years, much has been tried, much has been done, but even acknowledging that, we can't deny or ignore that there are problems.

We told him...

That we came to him with really strong fears.  We didn't want others to misinterpret why we were there.  We didn't want others to be offended or to become defensive -- we knew this was going to get around, if it hadn't already.  And we told him how very afraid we were that there might be repercussions, whether towards ourselves (even though we came with no hidden agenda), towards our children (any of them, including our other two children in the elementary STEM program), or towards children with IEPs who apply to STEM (who need this program for a variety of reasons).

We told him...

That we didn't need to get bogged down in the history, but there were a couple of critical pieces that he needed to know.  When we had spoken at the Board of Education meeting in support of the Vision and Goals (here) in September, we needed that vision so that we could meet both sets of needs or our children.  Where our children are now (in STEM) and why we feel we've had to choose between getting their special needs met and getting their academic needs met has its roots in their ES years.

My friend's son had been in general education, monitored and helped through each day, but not explicitly taught executive functioning and social skills.  A few times in 5th grade, he had some math enrichment, and late in 5th grade, he started a new social skills program that seems to work for him.  My son had been in general education in 1st and 5th grades and in the school system's Autism Program 2nd - 4th grades.  The Autism Program is different now from what it had been then; however, neither it nor general ed. had been a match.

There are lots of details we could have given the Superintendent, but the point is that our children languished -- a strong word that I used intentionally -- they languished academically with an imperfect understanding of how to address their needs as people with Asperger's.  The Superintendent's Vision, the Student Handbook, etc., say that we'll chart a course to excellence to fulfill the promise in every child.  They don't say that we'll be satisfied with mediocrity as we meet the minimum in every child.

Again and again in elementary school, I had made direct requests for academic rigor for my son, yielding little from the Gifted Department and nothing from Special Education.  In fact, Special Education finally said (more than 3 years ago) that it was not their obligation to provide gifted curriculum for students, but they would work with it if it were otherwise gotten.  (In point of fact we are the ones who have "accepted excuses.")  That's why I've tried to inform the Board of Education about the need for enrichment for all children at the elementary school level.  I couldn't have it for my child because it didn't exist for all children.  I firmly believe that if we had had appropriate programming for our children in ES, they wouldn't need so much to be successful in the middle school STEM program.

In short, nobody knew the learner or the learning, and nobody expected much.  What we were seeing was the by-product of their boredom compounded by their lack of social skills.

We told him...

That we had heard about the STEM program and the many positives:  it's an awesome, well thought-out, well structured, in-depth exploration of the Science/Math curriculum; students are with their academic peers; it's "school made interesting" from our children's perspectives, with engaging curriculum, field trips, technology, and fun and interesting applications.  And in 6th grade, students start out with social roles in labs explained and assigned -- not insignificant for our children!  In short, it's a program that covers the children in it.

When this opportunity presented itself, we had a lot to think about.  In my case, we had dismissed it because of the application questions, which do not speak to my child's strengths.  (I'm fairly sure I looked at them the first time and snickered.)  However, our doctor at CNMC had encouraged us to reconsider because, she said, "This is where kids with Asperger's shine."  My son hadn't been making it in general education without a lot of supports, but many of those supports were for environmental conditions.  This program had the rigor and the academic peers, and he bought into it.  He had never been tried in a placement that was this close to a match.

We also had to consider, if not in STEM, where?  His home middle school had an Autism Program, but our experience with the elementary Autism Program had been poor -- though we have since heard the middle school Autism Program might now be better.  Additionally, regular middle school had no more rigor than any other middle school -- Honors Reading and Honors Math aren't enough -- and Special Education had already said they wouldn't get it for him.

My friend also had a lot to think about, wading through the application questions and considering her son's needs for more monitoring than there is in general education in middle school -- they had been considering the middle school Autism Program.  However, he would have the same grade-level work except for Honors Math, and he would continue to be bored.  Then, when they were investigating STEM for their younger son last year, he said, "THAT's it; that is where I belong."  They had to take that seriously, leaving them with the choice between the Autism Program for more monitoring by educators already trained in the needs of students with autism and STEM for the interest and the rigor.  My friend raised all of her concerns with the autism team, and she, just like I had been, was assured that they could and would support her child.

And so our children applied and were accepted.

We told him...

That the STEM Program is fabulous.  The STEM teachers inspire our children, present information in engaging ways, deserve all the accolades they've received.  What we then talked about doesn't diminish that; we just had to talk about the holes.

I was told at the end of 5th grade at my son's transition meeting, without prior warning, that we needed to modify a few of his IEP accommodations to incorporate the idea "except as would compromise the rigor of STEM" -- saying that he could have the accommodation as long as it didn't affect the rigor of the assignment.  I thought it odd and concerning, but we knew Special Education wouldn't supply rigor, and middle school had only Honors Reading and Honors Math.  What else could we do?

Having to alter my son's IEP was bad enough, but when, two days prior to the start of STEM6, we were told "no accommodations in STEM," we were stuck.  Of course, we wondered about the legality of such a statement; of course, we felt frustrated with the restriction on the implementation of my son's IEP.  My son was ready to come to STEM, he wanted to be there, and we had no place else to send him.  We had already tried addressing his special education needs in the general education environment with limited success; we had already tried getting appropriate rigor with limited success.
His home school had nothing different to offer -- just more of the same.  And my son had already proved that when not engaged, unwanted behaviors appeared or increased.  Those behaviors (not the cause of the behaviors) became the focus of his special education interventions.

I didn't understand it because the STEM page on clearly stated that "appropriate accommodations and modifications will be made to address an IEP carrier enrolled in the STEM Academy."  (And that statement didn't get changed until sometime within the past week.  It now reads:  "Are special education students eligible to apply to the STEM program?  Yes, all students are eligible to apply to the STEM Academy."  [Now try to convince me that reality hasn't changed the standard.])  All special educators that I talked to about this indicated that they didn't understand, either, and shrugged their shoulders.  Even the Executive Director of Special Education, when directly presented with this information in the Spring of 6th grade, did nothing.  My son was told that he couldn't "wear his glasses" for Periods 1 - 3 every day.

My friend had known in advance (because of my son's situation), but she still didn't understand it.  At her son's transition meeting, she was presented with the same, to "make it more appropriate for middle school."  She was told they had to add, "This will not compromise the STEM curriculum," and were also told, "This is what we have to do."  My friend questioned it -- that her son could have full accommodations in Social Studies and Reading but maybe not in Math and Science.  The response was that he would still have his testing accommodations.  Her son was being told that he could "wear his glasses" for Periods 1 - 3 sometimes, but not all the time; maybe he would have to take them off and maybe he would be allowed to put them back on.  They didn't know when that would be and who got to decide.

Our children's IEPs now carry conditioning statements (my son's going on 3 years).

We had to choose, and we chose STEM.

We told him...

That our children do get some Special Education services, and over the years, my son has gotten more within the STEM classroom.  For both children, staff get training, and they can get help from the Autism Specialists, though the specialists must be invited/requested to be involved, and they have certain constraints on their involvement:  they can only suggest/recommend a course of action, not mandate.  [A few of the other services we had wanted to mention got cut as we got a little off track from time to time.]  For sure, we weren't saying that the teams aren't trying; but they're scrambling after the fact.  We're working on it.

We told him...

That our sons' grades look great by class.  However, if you look through individual assignments, you'll see quite a spread of scores.  Why are some so high?  In part because of innate abilities, in part because of the huge stress we go through at home to make sure that the work is done, done well, done on time.  And though other STEM students may come to class saying that they couldn't get it done (and therefore get an extension), our children aren't allowed extended due dates because they would compromise the rigor of STEM.  We know that our children may take longer to do the work; "one hour per subject and stop" doesn't apply.  We make sure it's done every night, no matter what it does to our families.

Why are some grades much lower?  While some might say that a 70 or 75% is fine, as did the Supervisor of STEM a few weeks ago, we don't, not if the ability levels are higher.  Ability vs. performance is a critical distinction.  If with direct teaching of executive functioning and social skills, we can uncover the ability that's being masked by the deficits, then we know that the performance is not at the ability level.  We also noted that 1) If these are PRODUCT grades, they're weighted at 70%!  And 2) All STEM students signed a contract promising to maintain a B average.  How can 70s or 75s be good?

Though we hadn't planned to say it, we also pointed out that our children have been tasked with self-learning skills and concepts (e.g., evaluating internet resources, certain Science Fair steps, writing a bibliography in mandated formatting), and a number of these are being graded as product, not process assignments.  I'm fairly sure I mentioned that my son had 94 summer assignments to complete.

Our emphasis to the Superintendent was that there's more to the success of our children than their academic success.  The Executive Director of Special Education and Student Services has presented at CACSE meetings that our students need to be taught the soft job skills to be employable.
We'd like to see the school system jump on the bandwagon of prepping for college and career readiness by explicitly teaching executive functioning and social skills.  Most of what our children need is good for all children, making them have a smoother transition into post-public school life in college or careers.  With the explicit teaching of such skills, we can fulfill the promise inside each child.

We told him...

That there is no appropriate place for our children that addresses both sides of them.

Our children need both rigor and the ability for a highly trained special education team to have access to the STEM curriculum in advance so that they can proactively prepare the supports that are needed.  They need executive functioning and social skills training within the STEM framework; these are their life skills without which they won't succeed in college, careers, or relationships.

They need appropriate rigor without conditions placed on their IEPs.  Since we spoke at the BoE meeting last month, we've worked to address the fact that these conditions are in fact illegal.  Even if you ignore the many times that we tried to get answers prior to last month, it still took our beating at the doors to get a response:  The day before our meeting with the Superintendent, the Executive Director of Special Education and Student Services said that the conditions were not acceptable, and she stated that all such conditions on all the STEM students with IEPs will come off their IEPs and that they will never be put on another child's IEP again.  (No timeframe or logistics were given.)  This is great, but it's on paper, and the practice has to change, too.  They are also still saying that there will be no modifications to the programs.

We also noted that the Office for Civil Rights specifically states that such conditions are also illegal in AP classes; we respectfully requested of the Superintendent that conditions be removed from the IEPs of students in AP classes, too, and if they are on the IEPs of students in the Academy of Finance or the Global and International Studies Program, then from those IEPs, as well.

As I told the Superintendent, my plan has been to get my son through the "horrors" of middle school by attending the STEM program, which is the best match of anything he's tried to date.  If he wasn't accepted into the high school STEM program, or if he didn't want to be in it anymore, the back-up plan has been AP classes.  (They are still not a program, but they are rigorous, and there are many choices).  However, if the same condition exists in AP classes, there's no hope for my son.

We told him...

That now we have new problems:

• The Executive Director of Special Education and Student Services and the Supervisor of STEM are saying that STEM is an optional program and that it's not advanced, and it's not part of FAPE.  We have to argue.  It's one of the Pathways of our school system.  It is advanced.  And the "Dear Colleague" letter from OCR says this:
"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."
• They are saying that if STEM disappeared tomorrow, there would be a program for our children.  We have to argue.  Special Education has an Autism Program but won't get our children the rigor.  (They will work with it if it's otherwise gotten; we've seen how well that hasn't worked out.)  General education doesn't have the rigor across the board, nor does it have another rigorous program (in elementary and middle schools; high schools have the Academy of Finance and the GIS Program (still without modifications and just not interesting to our children).)

• They are saying that they need to look at adjusting the application requirements to include a certain level of organizational skills and ability to work independently.  We have to argue.  This is discrimination.  The "Dear Colleague" letter is clear on this, too:
"[Schools] may not impose or apply eligibility criteria that screen out or tend to screen out an individual with a disability or any class of individuals with disabilities from fully and equally enjoying any service, program, or activity, unless such criteria can be shown to be necessary for the provision of the service, program, or activity being offered"
Note from my previous meeting with these two people a few weeks ago that they stated insistently that students with disabilities are encouraged to participate in the STEM Program, yet now they were talking of excluding a set of the very children who need this type of program.  Should this happen, then there's really no place at all for our children

We told him...

That the current STEM program is a planned, coordinated, beautifully patterned quilt that provides full coverage for those who fit beneath it.  Our sons don't fit; parts of them are left hanging out in the cold, and we at home are left scrambling to find other ways to keep them warm.  A 2e program is a quilt, a planned, coordinated, beautifully patterned quilt that provides full coverage for all who are under it.

Our children at minimum need a quilt extension that gives them full coverage, making STEM work.  Offering lots of gifted programs in general education is another way.  Of course, a full 2e program would fit the bill!

He told us...

That our children would remain in STEM.

That he wants the STEM program to be rigorous but accessible.

That we had given him a lot to follow up on.

He showed us...

That he cares.

Friday, October 15, 2010

A day to remember all babies who left this earth too soon.

In 1988, President Reagan, backed by Congress, proclaimed October as Pregnancy and Infant Loss Awareness month.

On November 28, 2009,
John Matthew Ennis was born.
On November 29, 2009, Matthew left us.

Matthew didn't leave us unchanged.
Our lives will forever be better for his having lived.
Our hearts will always be full with love for him.

Tuesday, October 12, 2010


My husband's comment on his own Facebook status update about our having Forced Family Fun Night tonight:
So we're playing charades; [wife] is acting out walking the dogs and being pulled in opposite directions, trying to untangle leashes, etc. -- all very typical and familiar to everyone in the family.  [Son] (13) blurts out his guess:  "An abstract representation of America's dependence on foreign oil."  WHERE DOES HE GET THIS FROM? Never mind, I already know.
 So do I, honey, so do I...

Sunday, October 3, 2010

It exists, just not here.

One of the things that was said -- this time by me :) -- at last Tuesday's meeting was that there is no other place in our school system for my son.  I've said it before in this blog, I've said it in other venues, and it's my "parental input" comment on his IEP -- that this is the least inappropriate placement of what's available in our school system.

My son's IEP chair has responded that they believe that this is the right placement for him.  And then at other times, she has made comments like, "That's STEM.  I don't know about that."  Does anyone else see the disconnect between those statements?

On Tuesday, I said it again:  There is no other place for him.  A response came not from the Director of Special Education but from the Supervisor of STEM:  If the STEM program disappeared tomorrow, the school system would have a program for your son.  I beg to differ.  The school system had no program for my son before he entered the STEM program, and the STEM program meets only part of his needs.  If the STEM program disappeared tomorrow, in existence at this time is the Autism program, and the Autism program meets only part of his needs.  Special Education won't get him gifted curriculum, only work with it if he gets it, but the only gifted programming in our middle schools is Honors Reading and Honors Math, and those aren't programs -- they're classes.  There is no other placement that is a program, that groups him with his academic peers, that provides-across-the-board opportunities for rigor, that he buys into.

I've never been able to get the Department of Special Education and the Department of Gifted Instruction to work together.  (I first visited the Supervisor of the latter department in the summer between 1st and 2nd grades; my son is now in 8th grade.)   Representatives of both departments have been at the IEP table with little that was useful coming from it.  Even recently, when the (Executive) Director of Special Education donned the hat of overseeing Student Services, no connections were made between Gifted and Special Education.

Our school system is in a unique position:  The Executive Director of Special Eduction also wears the hat of Executive Director of  Student Services, which is tasked with providing "a developmental program for all students to maximize their personal and social skills as well as identify career goals" and with consulting "with school personnel in planning, implementing, and evaluating school programs to meet educational, behavioral, or emotional need of students."  What better time than now for the partnering of Special Education and Gifted?  They need to get into the same sandbox; then they need to work hard and be nice about it.

Our school system has the opportunity to become a leader in meeting the needs of the twice exceptional.  When parents are forced to say, "They have 2e programming in other school systems -- why not ours?" let's make our school system be that other one.  Now is the time to make 2e programming happen.

Friday, October 1, 2010

Generally the Truth

Remember I said that last Tuesday, a high-up in my school system said that it was disingenuous of me to say that my son hadn't grown in the four years that she had known him, and that when she first started in our school system, he was by himself with only adults around him, and now he's successful in the STEM program, and that it was through the work of his Special Education teams, she said, that he had grown to where he is now?

I've spent a good deal of time thinking about that meeting and about this little exchange -- not really an exchange since all I said was that I hadn't said that, but you know what I mean -- a lot more time than it really deserves.  One of the things that I try to do is to allow myself the knee-jerk emotional response that is human nature (but try hard not to act on that knee-jerk emotional response) and then peel back the layers of emotions.  What's left is generally the truth.

I've already talked about my son's early placement.  Apparently that wasn't the only thing that was bothering me, and I've finally put my finger on what the rest of it is:  "Through the work of his Special Education teams."  The people on my son's Special Education teams have been, in general, kind and caring -- rarely truly educated about Asperger's and how it affects students in general and my son in particular, and maybe not brave enough to tackle the barriers that prevented him from receiving both Special Education interventions as well as appropriate input -- but kind and caring.

That's all well and good, but what's bothering me is that if good has come to my son through the work of his team, I've had to fight to get him that team and those services.  Time after time, his services have been cut out, whittled down, watered down, variations of what's available.  I've made requests for what I believe he needs, been denied, followed through, gotten bits and pieces, gotten lip service, gotten the run-around.  I've had to go through his documents with a fine-tooth comb to make sure that what was discussed was included, and recently, to make sure that items weren't cut without my knowledge or consent.  And the relatively new "online IEP" limits my child even more as it waters down the "individualized" component of it by providing drop-down menus without providing "other" categories.  ("We're sorry.  We can't do that; the computer won't let us word it that way."  Find a way.)

I asked for the kind of program that he needs at the end of Kindergarten.  I asked for what he needs at county-level IEP meetings in 2nd and 4th grades.  Eventually I was told that the Special Education Department didn't have to get him the curriculum that matched his abilities, but if it were otherwise gotten, they'd work with it.  I got it for him.  And I was told that he could have no modifications or accommodations in the STEM program.  I had to learn which accommodations were considered, after the fact, to be acceptable.  And just this week, administration said that students with IEPs that met the basic criteria for acceptance into the STEM program could have appropriate accommodations but no modifications.  I'm waiting on the definition of "appropriate."  Now the fight is for explicit, planned teaching of his life skills:  social and executive functioning skills.