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.
~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
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.

Saturday, September 18, 2010

What to do, what to do?

I'm torn.  I have so many things I want to write about, but my family is in crisis mode right now, and I just don't have time.  (Even as I write this, I'm shoving breakfast in my mouth, making a To Do list for the day (which includes Steps 6 and 7 of my son's Science Fair project, plus the required forms), adding to the grocery list, color-coding the kids' meds logs, updating the calendar, trying to figure out who to hit up for offer the Girl Scout Nut/Magazine Sale, and answering my daughter's questions about the Betta fish tank by calling up and down the 2-story foyer.)

Synopsis of the three biggest issues:
  • My daughter's meds are being adjusted, and it's thrown her out of whack for dealing with the stressors in her life.  Big-time.  Really, really bad.  Hospital bad.  (I owe my sister a huge Thank You for talking/praying me through that drive to the ER.)
  • My son's executive functioning problems during the school day are still a big problem, and while the school team is working very hard to address them, we're starting Week 5, and he's still not bringing home what he needs or comprehending just what exactly it is that he's supposed to do with the assignments.
  • My son's EF issues are compounded by his social knowledge deficits.  And vice versa.
I hope to get back here soon because, as I've said before, I write for myself, and I really need to write.

Wednesday, September 8, 2010


After I put my daughter on the bus this morning, I'm heading over to the Board of Education meeting to offer my "Public Comment."  I don't know if this is a good idea or not.  I usually speak about the proposed budget every winter, but I've never spoken to the BoE in any other context.  And it's not the public speaking part that has me bothered.  I'm nervous that what I have to say will somehow come back to bite me on the butt, or worse, it'll bite my son on the butt.

I'm actually going to speak in support of an agenda item (an agenda item that I think is simply a formality and doesn't need support).  The problem is that I have to take this opportunity to raise the board's awareness that everything isn't hunky-dory, and the agenda item -- the Vision/Mission/Goals 5-Year Plan -- while not new, is the foundation for the changes my son needs.  I really, really dislike saying anything negative even in combination with something positive.

What I have to say is this:

I usually come to you [the BoE] for the budget cycle, but when I saw the Mission/Goals 5-Year Plan agenda item, I knew this was the time to talk with you.  There’s a lot of important information in the document, but I was struck once again by this critical statement:  “Accept no excuses, educating ALL with rigor, relevance, respect, and positive relationships.”  That’s not a new concept, but it does have an important context for me.

You know my story:  I have a son with Asperger’s who is now doing really well in the STEM program.  He's getting the academic rigor that he needs.  Everyone understands the need for rigor.  However, the social and organizational pieces are much more difficult to understand and fit into the educational model.  The truth is that without social skills and organizational skills, my son won’t be able to get and keep friends, to get and keep a job, to get and keep a wife.  He won’t be able to become an independent member of the community.

You know my story, but you don’t know the choice we’ve had to make.  My son could be in the Autism Program getting the supports he needs but not getting the academic rigor.  My son could be in the STEM Program getting the academic rigor but not getting his social and organizational needs met in a consistent, intentional manner, and having the additional constraint of  having accommodations only as long as "they don’t compromise the rigor of STEM."  It’s a choice between getting his academic needs met or getting his special needs met:  We chose to meet his academic needs.  In effect, we chose the least inappropriate placement of what’s available and not an appropriate placement. It’s the relevance part of “educating ALL with rigor, relevance, respect, and positive relationships” that we’re missing.

I'm not here to gripe, and I don’t mean to put anyone down.  I love the Pathways to Education that have already been created by the Superintendent and the BoE.  I’m here to support the Vision, Mission, and Goals as outlined in the Agenda for this meeting.  My son needs the school system to “know the learner and the learning,” and to have that translate into a program that addresses both sides of him.  Approving the Vision, Mission, and Goals may be just a formality today, but it offers the hope we need that one day soon, we won’t have to choose which needs to address.

Saturday, September 4, 2010


My son is 13 years old as of a few weeks ago.  It means something, I know, but birthdays just aren't the big celebration to him that they are to others -- like, say, my daughter, who pretty much demands that the world revolve around her for that one day!

I tried to blog about his birthday, but not much came of it from a neurotypical standpoint.  What has really been on my mind the last month or so is that we're in Year 10 of the diagnosis:
  • In March 2000, he stopped eating.  Everything.  Anything.  Post-traumatic feeding disorder with sensory food aversions, according to the doctor at the Feeding Disorder Clinic at Children's National Medical Center in Washington, D.C.
  • Over the summer of 2000, he had Occupational Therapy to address the above.
  • On September 13, 2000, the Feeding Disorder Clinic doctor told us at our follow-up appointment to stay the course with our interventions, but she really couldn't help us more because, by the way, he has High Functioning Autism or Asperger's, she wasn't sure because it's not her area and here's the phone number for the Autism Clinic here at Children's.  I will be forever grateful.
  • On September 13, 2000, I entered a post-diagnosis reaction state.  Crying any minute.  Sobbing on the shower floor.  Spiraling thoughts that couldn't be held.  Speculations about the future of this beautiful little boy -- how bleak they were.
  • On September 20, 2000, I realized that he was the same boy on September 13th at 2:17 p.m. as he was on September 13th at 2:16 p.m.  His diagnosis didn't change him.  His diagnosis armed us with the information we needed to make his future bright.
  • Late September 2000, my son entered the world of Special Education.
  • December 2000 - January 2001, he was tested at CNMC with the result of High Functioning Autism, later changed to Asperger's after retesting. 
    • January 2, 2001, at the age of three, he started school -- two years before he was supposed to.  I watched my three-year-old in his Cookie Monster jacket climb onto the yellow school bus and disappear around the corner.  I entrusted my child to the care of people with big hearts who worked in a system that functioned under the philosophy that he could have what they had available, and he couldn't have what they didn't.  In a system that limits the communication a parent can have with members of the school team to only the case manager.  In a system where little is given without parents' requests, demands, fights.  But I didn't know that then.  I thought that the people with the big hearts made the decisions.  And I held my arms wide when he got off that yellow school bus that afternoon.
    Since those early days, we've tried a lot of interventions, from music therapy to OT/PT/Speech by way of Adapted Aquatics, Social Skills groups, and medications.  We've fought with insurance, with school, and sometimes, with each other.  We've seen him grow, we've seen him regress, and we've seen him overcome.  These days, I see his mustache, I hear his deep voice, and I see that he's taller than the refrigerator.

    He has so far to go still.  But look at how far he has come.  He'll get there.

      Wednesday, September 1, 2010


      My head hurts.  It really hurts -- one of those tension headaches from the base of the skull up and over the top -- whipped by the combination of:
      • aggressively teaching my son executive functioning skills -- tied for first as his greatest deficits.
      • trying to get him to do his homework when he hasn't logged it correctly in his agenda book and/or brought home what he needs
      • trying to communicate with the school team where the holes are (which means that I have to look for what's not there)
      • juggling both kids' homework demands and making dinner and feeding the dogs
      • working on a distressing volunteer project that makes my stomach hurt
      • re-starting my son at OT (Son when I told him last night:  "It takes a hit on my self-esteem.")
      • talking to the superintendent of schools, the director of special education, and school team members about the problems we deal with that we wouldn't have to if they would provide appropriate services and not rely on available services (Granted, these conversations are in my head, but they take my energy.  :)
      • being a sounding board for other parents of children with ASDs -- I like it, but it's so frustrating to hear the same problems today that my son had years ago, and to know that 1) I let so many things slip by me, and 2) those things for which I did make a difference in his case never generalized out to other children.  Our special ed. department opts to put out fires one at a time instead of preventing the forest from going up.  (I'm talking about administration, and though we've got good, new people on board, they are stretched too thin; if they can take on your child's case, good interventions fall off when they go away.)
      • watching Otis' back legs get wonkier -- Is it enough to take him to the vet?
      There's more, but that'll do because all these things don't just make my head hurt; they cause stomach aches and insomnia and bad dreams and panic attacks...