Friday, December 31, 2010

45th verse, same as the first...

Last year's post rings true today:  Year's End.

However, for those of you who celebrate the holiday,

Sunday, December 26, 2010

Won't change a thing.

Since we learned just a few days ago that Otis has cancer and will be with us for just a little bit longer, I've taken so many photographs of all of us with that dog!  I have plans.  I'm going to:
  • Change my Facebook profile picture.  (Already done.)
  • Make an ornament.  (Already started.)
  • Order a photo afghan.  (Already priced.)
  • Make paw prints/photo frame.  (Clay already shipped.)
  • Change my computer wallpaper.
  • Make keepsakes for my children.
Check with me tomorrow, and I'll have added to the above, I'm sure.

Not one of these things is going to make the passing of my Otis any easier.  Not on any of us.

Wednesday, December 22, 2010

Otis... I know.

This afternoon I found out that Otis has cancer and will be with us for maybe six more weeks.  These things happen, I know.  He's a dog, not a person, I know.  We have been so blessed to have him with us these two years, I know.

Unspeakable sadness, I know.

How I'm going to tell my children, I don't know.

Sunday, December 19, 2010

Squirrel Babies' Siblings

Removal of Conditions

I approved the draft IEP that removes the conditions from my son's IEP.  Sadly, I'm stuck agreeing to a lesser condition, and I don't know how to get around it.  The STEM Program requires students to work in groups quite a lot, so an accommodation could impact my son's teammates.  This wouldn't  be right, and I agree with that.  So now his IEP no longer says that he can have the accommodation as long as it doesn't compromise the rigor of STEM; instead, it says that he can have it as long as it doesn't impact his peers or it isn't the teaching point.
  • [He] should receive chunking of long-term assignments and reminders of upcoming due dates for each segment of the assignment, with extensions of due dates as needed. Extensions for assignments will be provided for all independent instructional and testing assignments and activities that do not impact his peers' ability to complete their assignment or activity in the specified time allotted.
  • Open-ended or extended tasks should be broken down with more specified directions and steps. This will be done for independent instructional assignments and activities that are not part of a group assignment requiring group members to break down the assignment or activity as part of their "group" grade. 
Then as I wrote the above, I realized that I had to rescind the approval.  I wrote the following to the IEP Chairperson and Supervisor of Special Education at my son's school:
I just re-read the rephrasing on the accommodations.  I've got a fundamental problem, and I don't know that it's limited to Special Education.  Here's the thing:  The phrasing on the first accommodation, which is still a condition, by the way, doesn't allow [my son] to have an extension if the group needs the assignment/activity.  However, students in the STEM program who don't have an IEP frequently come to class without their work completed, even when it's group work, thus impacting [my son] and their other teammates.  Now, perhaps those students take a hit on their grades, but I don't know about that, and I've seen repeatedly over the past couple of years that if students can't get it done, they come to class, say they couldn't get it done, and the whole assignment gets a pushed-back due date!  It seems to me that this phrasing makes it forbidden for [my son] but allows others to do so with impunity.  (It's now also a broad condition that impacts [my son] in Social Studies and Language Arts.)

In addition to the above "fairness" issue, I've got a legal question.  While I agree that [my son] needs to do the work in a timely fashion, the phrasing is still a condition, and I'm asking you to verify that it isn't illegal to have such a phrasing on an IEP.  I'm asking the same for the much-watered-down-but-still-a-condition phrasing of the second accommodation.

I'm really sorry that I didn't catch why I was so uncomfortable with these phrasings before I said that they were okay.  When I read them the first time, they made a certain kind of sense, and I also didn't process that these are still conditions.  The phrasings are okay if they're legal, but they make me uneasy.

Therefore, I need something in writing from the Department of Special Education saying that they have been checked out, and by whom, and that they are legal.  Please advise me if stating this request in this manner is or isn't enough to make that happen.

Again, I'm sorry I wasn't able to figure out what was bothering me earlier.

Thank you.
I don't know what will come of it, but I surely want it in writing.  I've been treated to inaction, lies, and threats in the past; I can't afford to let it continue if there's any question about the legality.

And What Happened After That

I had met with the Supervisor of Special Education for my son's school after the initial IEP meeting to remove the conditions.  The Supervisor had ever-so-gently taken me to task for the tone of my daily emails to the school team regarding my son's pack-up for the day (what he brought home, what he didn't bring home, what he wasn't able to explain, what didn't have due dates, what was signed off, what wasn't, etc.).  I truly believe that you catch more flies with honey than vinegar, but eventually, I lost that perspective.  Four years of little progress on the pack-up procedure makes for some mighty stale honey.  (At one point this school year, my Facebook status read, "Don't you just love having to be obnoxious to get your child what he needs at school?  Not.")

I should point out that I didn't ask for the Supervisor of Special Education to become involved in the situation; someone on the school team must have requested her presence.  At no time during the honeyed past of lack of progress has the Supervisor involved herself.  (Nice person, the Supervisor, just not involved until recently.)

As I said, I was taken to task, and I sent an apology to the team:
I need to apologize for the tone of my "Day __ Pack-up" messages.  My intent was to log what did/didn't happen with packing up; I regret that the manner of logging that information may have caused a rift in the team.  While my sense of urgency hasn't declined, I'll try to replenish my stock of patience as we work to address [my son's] needs.
Who knows if that was enough to mend the relationship on their end.  I know that tomorrow will be the 71st day of this school year and we're still "working on" the procedure -- a procedure that, by law, is supposed to be in place by the start of the school year.  So really, who owes whom an apology?

Cool FB App.

My Girl

My daughter competed in a Robotics Competition yesterday as part of her STEM5 program.  It was an incredibly stressful set-up, and there was a hugely disappointing snafu with her team's programs.  She went into overload and "withdrew" from those parts of the day; however, she was able to participate very well during the other sections during the day.  Her team tied for 2nd place for Teamwork.  I hope she learns from the snafu and remembers the positives.

Saturday, December 11, 2010

The Big Day

My mother asked us kids to throw her a 75th birthday party.  Well, there was a lot more to it than that, but that was the result.  When we said we couldn't afford to invite 113 people and it wouldn't be appropriate to hold it in her church hall, she said that we could just surprise her with it all.  Again, there was a lot more to it than that...  Anyway, tomorrow is the big day.

Today we did all the last-minute things that people do before such events:  We made, frosted, and decorated more than 100 cupcakes (duly tested for quality), and we put together two poster boards of photos -- one for a "How Old Was I?" game and the other of random pictures of my mom over the years.  We also put together a couple more games, including a 1935 Trivia Quiz and a "How Well Do You Know Barbara?" Quiz.  While the party is an Open House, we should still be able to go through them with a lot of the guests.

Tomorrow we have to get up early, coordinate showers, etc.,  pack up all the last-minute necessaries, and load up the cars for the hour-long drive to the rec center in my mother's condominium complex.  Then it's the usual:  Unload everything, decorate the hall, lay out the food, set up a gifts table and the guest tables, and maybe set something up to guide guests to the rec center.

I think it'll be a good party.  I'd just like to be able to go to sleep now.

Wednesday, December 8, 2010

Mom of two

I had coffee with Matthew and Luke's mom this morning.  Love her and her boys.  That got me to thinking that I hadn't yet posted this photo:

The monkey is the ornament my daughter and I picked out for Matthew last year.  (I swear it's not as big as it looks!)  We picked the snowmen for Matthew and Luke this year as I wanted something that included their names.   I suppose it's kind of odd to hang ornaments for another person's children on your own tree, but then, they've had such an impact on my life...  So in loving memory of Matthew and in sweet anticipation of Luke, Merry Christmas, Lori's boys.  You are so loved!

Saturday, December 4, 2010


If going back to sleep means I have to continue that dream I was having, I'm staying awake.  I don't care what I have to do tomorrow.

Thursday, December 2, 2010

Squirrel Babies

My daughter and I went to my sister's for Thanksgiving.  I'm so appreciative that my sister and brother-in-law stepped up to the plate after our grandmother died and took on the job of hosting Thanksgiving.  I get to see my family, and my kids get the memories of going to New Jersey for a traditional Thanksgiving with family.  (Except we don't really do the whole football thing.  Wasn't it Erma Bombeck who said, “Thanksgiving dinners ... are consumed in 12 minutes.  Football halftime takes 12 minutes, too. This is not coincidence.”)  And nobody has to gripe about coming to Southern Maryland -- a beautiful place to be, but on a peninsula to nowhere.  (The office mate of a friend of mine asked my friend where I was living soon after I had moved away from Philly.  My friend told her that I was about two hours south of Baltimore.  The office mate, originally from Baltimore herself, stated quite emphatically that there was nothing two hours south of Baltimore.  Beg to differ.  Just.  Two hours and fifteen minutes south of Baltimore is nothing but water.)

My daughter has been plotting and planning with her friend just what exactly they were going to do for Black Friday.  She and her friend saved up their money, made lists of the things they wanted to buy, checked out the stores they wanted to go to, and decided that they would each get the other something.  Then they told each other what they were getting.  We started our Black Friday at Toys R Us and ended it at Cherry Hill Mall.  I've got to tell you that while I wish my daughter had Executive Functioning skills commensurate with her cognitive abilities, I appreciated the discrepancy when she went on overload and asked to go home before we made a complete circuit of the mall!

On Saturday, we went to my husband's sister's for our second Thanksgiving with his side of the family.  My in-laws have passed away, but the families of all six surviving children were there.  That hasn't happened in a long time, and I'm glad we got the chance to see everyone.

Science Fair
My son finished his Science Fair project, including the data book, research paper, abstract, and display board, Sunday afternoon of Thanksgiving weekend.  He gave his presentation in class yesterday and said it went fine.  While the project itself is mandatory, participation in the school's Science Fair competition (called Brain Battles) is optional for STEM8 students.  I'm a little disappointed that he opted out of the competition, which is next week, but I think that's because in the mandatory STEM6 and STEM7 competitions, he did really well, going on to the county level Science Fair both years and then to the regional competition last year.  I think that was a good confidence booster for him, and it certainly didn't hurt my "mama's pride" any as I look at it as support for his belonging in the STEM program.  This year, we won't know.

On the other hand, I'm relieved he's not participating in Brain Battles next week.  He's got an 8th-grade field trip that day, and students are expected to return a scant 45 minutes prior to the start of Brain Battles.  If he participated, he'd have to go straight from the field trip bus into school -- I'm sure I'd have to supply dinner in there somewhere -- for a couple more hours of "good behavior" in an overwhelming atmosphere.

So for us, Science Fair 2010-2011 is effectively over.

Birthday Party
I've mentioned before that my mother's three children are hosting a 75th Birthday "Open House" party for her.  It'll be in Pennsylvania in just a handful of days.  My sister and I have been doing the planning, buying, ordering, and making.  (My brother will do the errand-running on the day of the party.  Suits me -- I don't know the area, and he used to live there.)  We firmed up a bunch of stuff over Thanksgiving weekend, and praise the powers that be, we made a centerpiece for under $15.  I've also badgered my siblings, children, nieces and nephew to give me a "memory" of her for inclusion in her scrapbook.  To date, I have only my nephew left to nag.

Putting together the scrapbook has been a bit of a nightmare.  I don't have the scrapbooking supplies and knowledge that I need to do the job I want to do; I've had to settle for something that's nice but wouldn't cut it among the scrapbooking crowd.  That's OK.  I've done the best I can do with what I have.  But I can wish.

That's also true of the photos I took over Thanksgiving weekend of the three of us with our mom.  When did we get so old?  (And in my case, so wide?)  My mom was so hunched over she was practically kissing the camera, caught most of the flash, and was 12 shades whiter than the rest of us -- which is saying something as I would be the winner if Crayola ever ran a contest for the color "pasty."  I had a chin thing going on, and my brother had a big ol' bandage on his cheek from a procedure the day before.  My sister looks reasonably decent, but we all caught the glare on our glasses.  Really, there just aren't enough "special effect" features in my photo software package to tidy us up.  (The "elongate like Barbie" button was conspicuously missing.  Maybe they charge extra for that.)  Fortunately, the usable space in the scrapbook is 7x7 inches, so if I print us really, really small and make the "Memories of Mom" write-up really, really big, we might have a winner.

Anyway, here's the first page:

I've got all this other flotsam and jetsam to get out of my head, but this'll do for now.

Monday, November 22, 2010


I have all these thoughts squirreling around in my brain:  Stuff I want to post, stuff I have to deal with, stuff I don't want to think about but that won't get out of my head...

I've got Girl Scout stuff I want to talk about, mundane in some ways, but fun to me.  I want to post about the great job my girls did with the Nut Sale, or how they were able to take my lame (cheap) craft idea and "reduce, REUSE, and recycle" a bunch of leftover craft bits into fun whatevers, or how they're progressing on their Junior Girl Scout Bronze Award -- the highest award Juniors can earn -- of collecting old flags and planning a flag retirement ceremony to be held this spring.

I've got stuff to do for my daughter that is pretty high up there on the Overwhelming Meter.  A lot of times when the meter is spiking, writing it out helps.  (Sometimes I can't sleep until I do.)  There's also Thanksgiving not once but twice as we visit both sides of our family, and for the first time, we won't all be together as my daughter and I go to my side on Thursday while my husband and son stay home -- drat that Science Fair project and the cost of boarding Otis in the hospital wing for six nights -- until we meet up for his side on Saturday (his birthday) before driving home caravan-style that night.  Add to that the planning, shopping, and assorted jobs surrounding my mother's "surprise" 75th birthday party, dutifully but not joyfully completed.  And I've got homework from the Superintendent of Schools that I haven't done yet.

And always in the back of my mind if not the front is Matthew.  There isn't a day that goes by that I don't think of him.  I don't know why his few hours of life have affected me so strongly.  Maybe because his mother shared him so freely with us and allowed us to love him every minute of his nine months of growth.  But the anniversary of his birth, and so sadly, of his death, is approaching next week, and I find myself overwhelmed by the loss of him.  But because I've got all the issues surrounding my son's education twirling like plates on sticks in those old variety show acts,  each one ready to wobble off and break if I take my eye off them for a second, I couldn't even attend the baby shower for Matthew's brother, Luke.  No, it's not that I couldn't afford the time.  It's because I'm a coward.  I'm so distraught by all the things happening in my son's life that the thought of having to be social did me in.  And the thought of having to be social celebrating Luke and grieving Matthew while in the presence of people who didn't stand up for my son made my stomach hurt.  So instead of being there to support Matthew and Luke's mom in a joyously difficult/difficultly joyous time, and maybe getting a little "therapy" myself just by being there, I cravenly stayed home and napped those minutes away.  Not one of my better supportive moments.  I don't want to think about it, but it won't go away.

I have no ending, just squirreling thoughts.

Friday, November 19, 2010

Imperfect Understanding

At this month's CACSE meeting, part of the Director's Report included a statement on the overidentification of students with disabilities.  Of the 17,000-plus students in our school system, over 1,700 (or approximately 10%) of them are IEP carriers; this is a big reduction in our percentage, which had been about 20%, I think she said.  (But don't quote me on that.  She might have said 12%, and I had it stuck in my head that it was 13%!)  Our "numbers" now align with the national percentage, giving us "proportional representation."

On so many levels, this strikes me as just plain wrong.  If a child has special needs, then by gosh and by golly, he should have those needs identified, and he should have an IEP to address those needs if an IEP is appropriate.  You don't say, hey, you don't really have a disability, and I'm taking away your services just to make our "numbers" line up.  And that's my knee-jerk, emotional response to hearing that my school system has "overidentified" children with special needs and will work to "bring those numbers down."

Thank goodness another representative at the CACSE meeting asked for clarification.  (I couldn't even formulate a question.)  The Director was able to provide more information about what the federal requirement is and how the school system has to deal with it.  (It's the party line, but I understood it.)  To the best of my memory, these were the points:
  • The  federal government requires that school systems maintain representation of students in school districts to levels proportional to the national average.  If they don't, federal dollars will be withdrawn.
  • They have this requirement for many different subgroups, at a minimum, all the subcategories that make up the groups for determining Adequate Yearly Progress (AYP).
  • School systems must create an action plan to address the disproportionality. 
  • Students in the Special Education subgroup must have their cases reviewed to determine if they do indeed have the proper educational label and whether their needs require an IEP or other interventions.
  • An example is the fact that a huge number of African American boys -- a disproportionate number -- are educationally labeled as having an emotional disability.  I get this example and want to see proportionality.
  • Another example is that our school system had too many students identified as having a speech/language disability.  Upon examination, noted the director, a fair number of those students were receiving speech/language services for issues that fell within "normal" parameters for their ages.  The specific example given was that having a lisp does not become developmentally outside the norm until about age 8-9, so children who lisp at age 7 are within developmental ranges and should not be receiving services for that issue.  While I get this example, I don't like it.
It seems to me that there are some problems:
  • The first problem is semantics.  The first time, the second time, the third time I heard the Director say, "We have overidentified children with special needs and will work to bring those numbers down," I really did think she meant to take away services from children who needed them, and I couldn't make sense of that.  And for heaven's sake, if there's a reason for higher numbers of certain disabilities, then they are what they are.  (Our county is home to the Patuxent River Naval Air Station, a 30,000-person employment center, or, as we in the Autism Spectrum Support Group call it, Geek Central.  It wouldn't surprise me at all if we had a higher-than-the-national-average number of children with the educational label of "autism.")  But that wasn't the meaning of "overidentified."  The Director's explanation showed that the plan was to examine professional standards and to train Special Education staff to a standard for evaluating cases.
  • The second problem is trust.  I have to trust that our Department of Special Education is in fact doing exactly that:  Examining professional standards, training all evaluaters to those standards, and consistently applying those standards without skewing those standards to  ensure that the numbers come down, to the detriment of our children.  I have to trust that children yet to be identified are fairly identified and not passed over so that "the numbers" stay down.  Both are problems, the latter since we know children who are being denied the educational label of autism here in our school system despite having the medical documentation of a diagnosis of autism, and the former since we know children with autism here in our school system who are being mislabeled as emotionally disturbed, and the school teams are adamant.
The Director is not in an enviable position.
Neither are our children.  Trust is not easily given anymore.

      Thursday, November 11, 2010

      Cast all your anxiety on Him because He cares for you.

      Dear Lord, you know what's in my heart.  You know what's happening in my family.  You know the hurt and the confusion, the turmoil and the stress, the frustration and the anger that each person feels.  Please guide us to healing.  Amen.

      1Peter 5:7

      Sunday, November 7, 2010

      Just let me say here...

      Artist:  Thaneeya McArdle
      I took my daughter up to Children's National Medical Center last week for an all-day evaluation.  We saw a doctor in the Executive Functioning (EF) Clinic.  And just let me say here, Who knew Children's had an EF Clinic?  Certainly I didn't, not until one of our other doctors at Children's Center for Autism Spectrum Disorders mentioned it several weeks ago.  An EF Clinic.  Imagine that.  Been coming to Children's since the Fall of 2000, and I never knew.

      So I took her to the EF doctor.  I had had a "parent intake" appointment three weeks prior and had gotten a really good sense that Dr. H. knew her stuff.  I had some homework -- which I tried to do and at least didn't get shut out/shot down by my daughter.  Then while my daughter was off with the assistant for a couple of tests, I spoke with Dr. H. again.  And just let me say here, Who knew that we'd strike it rich again with a doctor who heard what I said, remembered it, and acted on it?  This is just not typical -- not so much at Children's, whose work is fabulous (but whose billing department gives me nightmares), but in the general arena of local service providers who just don't seem to get the especially special needs of my children.  (Though I must note that our local asthma/allergist has been wonderful for the three of us who see him.)

      Dr. H. laid out some interventions and the research behind them and gave me some more homework.  She spoke with my daughter, with and without me, and she gave my daughter plenty to think about and some homework, too.  And just let me say here that though I thoroughly intend to have a little breakdown about the colossal amount of work this is going to take, along with the time, energy, and creativity that I don't have, I'm more hopeful of this plan than I have been of any other intervention laid out for us in the past five years combined.  Practical.  Tangible.  Tailored.

      My daughter doesn't take to people or situations quickly.  She carries a lot of anxiety around with her and puts up a fair number of walls.  Past interventions routinely yielded such statements as, "That never works," and "Those things don't help."  But just let me say here, my daughter said, when asked what she thought of Dr. H., "She can take anything and turn it into perfect."  And when she described her to her dad, she said, "She's like magic.  She can turn nothing into magic"

      So just let me say here, Thank you, Dr. H., for bringing back my hope that we can help my daughter and my family.  And thank you, Dr. A., for telling me that Children's has an EF Clinic.

      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.

      Thursday, September 30, 2010

      If you think you're right, you don't know you're wrong.

      On 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. She said 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.  It was through the work of his Special Education teams, she said, that he had grown to where he is now.

      Hmm...  We can skip over the fact that, disingenuous or not, I didn't say that.  But doesn't that description of his placement and the implementation of his IEP from four years ago really say that he wasn't in the right place back then?  When we agreed to his placement in the just-formed Autsim Class at our elementary school, when he was set to start 2nd grade, it was because it had been presented to us as the perfect match for him.  Compound that with the fact that to date, general education teachers hadn't been supported in the ways they needed to be in order to reach him.  Well, the proof of the pudding was in the eating, and I've already said what I have to say about those really bad years.

      You can't say that his elementary school team "knew the learner and the learning" -- certainly not by the end, when the members of his 5th-grade team were beyond doubtful that he should go into STEM6 -- and no one expected excellence from him.  He couldn't do what was then asked of him without intense supports, was the thought; how could he succeed in the rigorous STEM program?  And now, in the middle school STEM program, though he receives Special Education services, he has constraints on what they are and how they can be implemented.  And while he has had a para with him throughout this time, what he has needed hasn't been consistently supplied -- supplied in ways that he can understand.  He is still not understood as a person with Asperger's.

      I acknowledge that many have tried.  I acknowledge that much has been done.  What I won't accept is denying that there are still holes in his educational "quilt" just because it provides some coverage.

      Wednesday, September 29, 2010

      Well, spit.

      I asked for a meeting with the Supervisor of the STEM Programs.  My intent was to present her with the statement about IEP carriers that is on the STEM website, to recap her statement about IEP carriers in STEM, to inform her of what we were met with when my son entered STEM in the 6th grade, and to ask her to explain/reconcile what is happening (that inclusion isn't the practice).

      My meeting was at 10:00 yesterday morning.  I figured it would take maybe 10 minutes.  When I got there, the Supervisor informed me that she had asked the Executive Director of Special Education and Student Services to join us.  We sat down.  The Supervisor said that she hadn't known which of my children this was about (as I have two in STEM), and I replied that my daughter doesn't have an IEP, so this was with regard to my son.  I quoted the STEM website and the Supervisor's statement and explained how we were told we had to change the IEP and that later we were told that my son couldn't have any accommodations/modifications in STEM.  Then I asked her for an explanation.

      The gist of the reply (with pieces from both women) was that if a student with a disability meets the basic criteria of acceptance into an additional program such as STEM, then s/he is encouraged to participate  with accommodations that allow access.  However, the program (or what is done in the classroom) can't be changed.  (Interestingly, I learned that the same thing happens in our high school AP classes.  Also interestingly, the Director took me to task for writing down her answers, claiming that I was making it difficult for her to have a conversation.  I responded that I couldn't keep track of the information, process it, and form a response if I didn't write it down.  (I didn't think until later that I really hadn't been particularly interested in having a conversation -- I had come to ask a question and get clarification.  I think that writing down the answers to a question is reasonable and appropriate.  If someone in that room had a different agenda, it wasn't me.))

      I had asked a couple of other questions at the beginning (How did there come to be conditions on students with IEPs?  Who decides the appropriateness of accommodations/ modifications/ interventions?), but they got lost in the shuffle.

      I emphasized (and repeated several times) that the website allows for appropriate accommodations and modifications, and that parents/students are basing their decisions about applying to and attending STEM in part on this explanation.  I don't think the Supervisor understood at first what I was saying -- that the website says modifications are allowed, but they just told me that modifications aren't allowed.  I also emphasized that all of it needs to be made clear, in whatever manner that happens, so that parents/students can make informed decisions. 

      Both the Supervisor and the Director agreed that the website needed to be changed.  The Director suggested that the transition teams at the elementary schools needed some training -- I think that was her word -- and she postulated that when I was told that my son could have no accommodations/modifications in 6th grade, the team was trying to make it clear that they couldn't modify the program.  (I find that an interesting take on the situation.  I wonder how she would explain that my son has a benign accommodation in his IEP -- to be able to type his work -- but he was not allowed to do so for certain Science activities in 6th grade.  He had to handwrite those pieces despite his documented issues with handwriting as well as his proven track record of producing more when typing than handwriting.) 

      Clarifying that one concept was my sole plan in speaking with the Supervisor.  What actually happened in the other 50 minutes of that unexpected meeting that included the Executive Director of Special Education and Student Services was a Q&A about my son.  I several times stated directly that I wasn't prepared to answer some of the questions that I was asked and that I hadn't known the Director was going to be there and hadn't prepared for anything other than my stated purpose.  The Director's purpose seemed to be to have me state exactly what accommodations in my son's IEP were not being implemented today.  The Supervisor's purpose seemed to be to state that since my son's grades were fine, he must be receiving the accommodations he needs -- or perhaps he doesn't need them.  None of that was why I asked for the meeting with the Supervisor of STEM, and I couldn't answer those questions well that morning.  (Other things happened, too: The Director said that it was disingenuous of me to say that my son hadn't grown in the four years that she had known him.  Interesting comment on a couple of fronts -- one, that I was attributed with making that claim (hadn't done so), and two, I had to go look up "disingenuous" (ouch! that would have hurt had it been true).)

      So now I'm left with a few problems:
      • What do I do about the fact that there are still conditions on children with IEPs in STEM (and in AP classes!)?  The Office for Civil Rights clearly states that this is a violaltion of FAPE.
      • What kind of damage control do I need to do with my son's past and present school teams?  My meeting with the Supervisor of STEM was not supposed to involve them; I wanted a clarification of how the website and the Supervisor's statement of inclusion could be reconciled with what we were told and what parents are still being told in practice.  My off-the-cuff answers to some of the questions during the rest of the meeting seemed to me to become the Supervisor's and Director's focus and how they wanted to proceed; I only wanted an answer.
      • What damage has already been inflicted on my children because I brought all this up?  Who is scurrying in the background, trying to make this about me and not the children?  Who is trying to make sure that all legal bases are covered, and perhaps not hearing what I'm saying?
      • If I publish this post, do I endanger my children or the future of other 2e children in the STEM programs?

      Wednesday, September 22, 2010


      I went to the Southern Maryland College Fair yesterday morning.  I know that my son is only in 8th grade, but I also know that he's going to need a special university to meet his needs.  However, if I'm a successful advocate, maybe, just maybe, he can learn most of what he needs in the executive functioning and social skills arenas during the next five years in our county schools and will need only minimal supports in college.

      Anyway, there were 108 colleges and universities represented there.  I started out at a table that had an available recruiter and just started asking.  I wasn't sure how to explain what I was getting at, but by the time I made it around to the halfway point, I got the gist of it:  Most universities have to be ADA compliant -- I'm not sure if that applies to private universities that accept no state or federal dollars -- and have to provide certain supports to otherwise qualified students.  I can visit their websites to see the kinds of supports that their "Student Support Services" offices offer.

      I know from talking with professionals that there are universities that now offer supports specifically designed for people with Asperger's.  Unfortunately, the universities that I was interested in -- those within a few-hour drive from home -- weren't among them.  Sigh.  That doesn't mean, though, that in the next five years they won't create them.

      At this moment in time, it's really hard to imagine what my son will be like in four to five years.  If I were to help him decide based on how he is right now, I'd want him at one of the two local colleges, and he'd live at home.  So I guess what I really want is for him to do a whole lot of growing between now and then so that he can get the full college experience on a level playing field.

      (Oh, and I chit-chatted with the Superintendent of Schools.  He's a very charismatic man, so it's a bit like talking to a rock star and your highest-up boss at the same time.  He genuinely cares about students, but I can't help being scared every time I talk to him because he holds the futures of my children in his hands.  I can't afford to blow it.)

      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?)
      ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
      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.