Monday, November 22, 2010

Squirrels

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.