Monday, January 31, 2011

An opportunity

Back when I taught writing classes, I had to teach persuasive essays.  My students breezed through the "easy" ones, those that persuade an unaware audience -- just list out your arguments, slap an introduction and a conclusion on it, and you're done.  My students had a lot more trouble when they had to persuade an opposing audience -- when they had to predict the arguments of "the other side" and show how they were wrong and my students were right.

I've got a really big meeting tomorrow.  I'll write about it afterwards.  Right now, I'm slightly queasy.  It's not that I'm not in the right -- I am.  It's not that it isn't worth it -- it is.  It's not that it doesn't need to be done -- it does.  It's that I have to promote a set of recommendations to the very people who ought to have understood the situation long ago, who ought to have fought for it themselves, who ought to have championed the cause.  Instead, collectively and individually, they've denied it's a problem or have by their inactivity allowed the problem to exist and continue or have knowingly chosen to set up roadblocks.

I can understand being unaware of a problem; unless you've encountered it yourself, it's hard to know it exists.  But the people involved are paid to be informed and to address problems.  And I can't understand presenting wrong and even prejudiced information as fact, particularly when you're in a position of authority and, moreover, your position is to help the people you're hurting.  Why would you do it?  What do you get from it?

I know I'm painting with broad strokes here.  I know not everyone or everything is bad; it's not all black and white.  But the end result is.  Do you teach my son what he needs to know, all of it, or do you not?

I've got a chance to make a difference tomorrow.  Please, God, help me.

Thursday, January 27, 2011

No Magic Wand Required

Back in October, the Superintendent of Schools offered my friend and me the opportunity to meet with him to share the stories of our children.  At the end of that meeting, he set us some homework -- to tell him what could be done within the existing STEM Program to meet the two sets of needs of our children:  the need for academic rigor and the need for direct social skills and executive functioning skills instruction and support.  Essentially, he said, "If I could wave my magic wand, what would you want me to do?"

This week, my friend and I finished the assignment.  We wrote up a list of recommendations.  Some of these recommendations are in the process of being implemented, some are implemented partially, and we hope that others will be implemented as quickly as possible.  It all boils down to one idea, and there is no magic involved:  Know the learner.  From central office to the classroom teacher, everyone needs to know the learner.

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My friend and I started with a problem statement followed by a statement about their needs:  Students with Asperger's are not well understood and therefore may not be appropriately supported within the existing middle school STEM classroom.  Highly abled students with Asperger’s typically do well academically when challenged with appropriate rigor.  However, because their grades are good, their “life skills” need for direct instruction in social and executive functioning (EF) skills is often minimally addressed.  When both sets of needs are addressed, highly abled students with Asperger’s are truly college and career ready.

We've heard several times that the STEM Program must maintain high academic rigor, that all students must be prepared for group work, and that adults may facilitate and monitor but not "interfere."  I mostly get the the first two constraints, but the third one seems to be subject to an awful lot of interpretation.

I. As I said, knowing the learner is the basis of all the recommendations we made.  The first recommendation is about training, real, true, more-than-surface-level training.  To understand our children, general education and special education staff (both, not just special educators) must understand what it means to be a person with Asperger's and how Asperger's impacts students in the classroom; as a baseline, staff needs to be familiar with the development levels of academically highly abled neurotypical children, too.  In sum, staff need to be trained to teach twice-exceptional students.

In the case of students with Asperger's, training also needs to cover how to explicitly teach social skills and executive functioning skills.  One of my son's doctors at Children's National Medical Center said to me several years ago that we need to remediate as much as we can and then accommodate the rest.  Our children don't learn these so-important "life skills" the way their neurotypical peers do.  They can learn them, but they need trained staff, whether general education or special education, to teach them. 

One of the problems we run into so often is that one or two people on our children's school teams "get it" when it comes to working with this population.  However, when they leave or are absent or it's a new year with different personnel, everything falls apart.  Therefore, we also recommend training across the board so that one absent member of the team doesn't cause system failure.

Part of training has to include timeliness.  The law states that an IEP has to be ready to be implemented on the first day of school, yet over and over again, we've had to wait for our children's needs to be met until staffing can be assigned, and training (and supports) may not take place for weeks into the start of the school year.

II. Another major recommendation is to have one case manager (trained in 2e, especially 2e/Asperger's) for all middle school STEM grades.  (We also recommend one case manager for elementary STEM students as well as one for high school STEM students.)  My son is in his third (and final) year of middle school, and he has had three case managers, none of them experienced with his type of needs, and none of them experienced in him.  One experienced case manager for all three years eliminates the need to “start over” every year (and reduces the need for training).  But the case manager can't be just anyone.  She must have a thorough working knowledge of both the STEM curriculum and the needs of 2e students.  More than that, I believe she needs to want to work with this population, which often gets a bad reputation because they are not understood, which leads right back to the need for training and consistent staffing...

Highly abled students with Asperger's may have accommodations or goals related to social skills or executive functioning skills.  It may fall to the case manager to oversee if not implement the accommodations or goals, yet she may never see the assignments!  We believe that to proactively prepare, the case manager must have access to assignments prior to students' receiving them in order to anticipate their needs in executive functioning/social arenas and to implement appropriate interventions.

III. The third recommendation we made to the Superintendent is "ownership" of our twice-exceptional children by both STEM and Special Education.  One of the major obstacles to getting both sets of needs met is special education's attitude of "That's STEM" and general education's attitude of "That's Special Education."  If we can eliminate that delineation, both teams can work together to address both sets of needs.  And doesn't that come right back to training and understanding?

IV. The STEM program is in its fourth year, yet the organizational structure is unclear to parents.  I asked for an organization chart of the STEM Program a couple of weeks ago and am waiting for it now.  Without it, it's difficult to know the chain of command and the roles of the various staff and administrators.  We know that there are school-level issues and a lack of understanding of highly abled students with and without special needs; we are just not sure who should address them.  Our recommendation, then, is for general education and special education administration at the school level to increase its understanding of highly abled learners, including 2e.

Certainly with four years under its belt, the following should be assessed:
  • the appropriateness of the demands on STEM students
  • the expectations of how much time each assignment takes to complete
  • the developmental appropriateness of the existing curriculum for both academic rigor and EF/social skills for nondisabled highly abled students
  • the appropriateness of assignments with respect to quality vs. quantity
Perhaps that happens as a matter of course.  If it does, I'm surprised that some issues are still outstanding.  If it doesn't, let's get a baseline understanding of highly abled learners to be sure that that the Program truly aligns with their developmental levels.

Also at the the school level, administration must schedule staff training on an appropriate timeline.  As mentioned above, training must occur before the start of the school year, and appropriate staff must be trained in EF/social skills/sensory issues/etc., prior to being tasked with implementation of IEP accommodations/goals.  It's not OK to assign a duty to a staff member who has not been trained in how to perform that duty for this population.  It sets the staff member up for failure, and worse, it sets the student up for failure and often for blame.

V. Our final recommendation regards central office administrative-level understanding of appropriate programming for 2e students (STEM Programs, AP classes, etc.).  General education and special education central office administration need to become informed about twice-exceptional students, about their needs and their strengths, and about their teachability and their potential.  Additionally, general education and special education central office administration need to become informed about programming for twice-exceptional students, particularly what can be incorporated into already existing gifted/accelerated courses/programs as well as what good, true 2e programming is and how it can fit into our school system.

We summed up our recommendations to the Superintendent as simply as we could.  In order to meet the academic needs and special education needs of students with Asperger’s in the middle school STEM Program, we need look no farther than the mission statement of this school system:  Know the learner and the learning, expecting excellence in both.  Accept no excuses and educate all with rigor, relevance, respect, and positive relationships.

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My friend and I have no idea what will come of completing our "homework."  I certainly hope that it will be received in the spirit in which it was given:  to work collaboratively with all in order to reach and teach our children.


Sunday, January 16, 2011

Not

As you would expect, I miss my dog.  I was talking with a friend who has experienced heartbreaking loss in her family as well as loss of her dogs.  She was absolutely spot on when she said that having Milo would help.
Milo on his Adoption Day 7/30/2010
We still have the doggie routines we've had since we got Otis:  Feeding, playing, morning walks, bedtime routines...  And Milo is a snuggler, "terrier"-ing his way under the blankets with anyone so covered.

What I'm struck by now is the "nots":
  • Otis is not underfoot in the kitchen at every opportunity for crumbs.
  • He does not need help peeing every couple of hours.
  • He is not looking soulfully at me for his bedtime treat after we put the kids to bed.
  • He is not trying to trick us into giving him a second bedtime treat after we put the kids to bed.
  • He is not forging a path in the snow. 
Otis braving the snow 3/2/2009
  • He is not pushing open the bathroom door to check on my whereabouts.
  • He is not following me from room to room while the kids are at school, plopping himself just near enough to keep his eye on me as he drifts in and out of rabbit-filled dreams.
  • He is not outside "patrolling the perimeter," wearing a path in the grass all along the fence line.
Otis patrolling the perimeter 8/2/2010
  • He is not eating bunny poos he has sniffed out in the back yard.  (OK, I can live without that one...)
  • He is not out for a walk with his nose to the ground sniffing out more bunny poos and all things interesting to a dog.
12/24/2010

These "nots" are different from the "should have beens" I might feel about other losses.  I don't think, "Otis shouldn't have died.  He should be here now."  He was a dog.  He got cancer.  He died.  That's how it goes for dogs.  It's more an absence:  Otis is not here.  But he was.

From Otis' last walk 12/26/2010

Friday, January 14, 2011

Goodbye, Otis

Late on a Saturday night during Thanksgiving weekend two years ago, I sent an email message to a rescue group saying that we were interested in Otis.  On Sunday morning, I got a reply saying that the West Virginia shelter that had Otis would be closing the next day, and Otis was scheduled to be killed.  Would we be able to take Otis that day if the rescue people got him and brought him to Maryland?  They would waive the fee and the home visit if we could adopt him immediately.
Several hours later, we met up with the rescuers in Bowie and, in a pseudo-clandestine exchange of paperwork for dog in a dark and rainy Petco parking lot, Otis became ours.  Or we became his.

Otis' first Christmas with us, December 2008
Over the next few days, I became suspicious that Otis had some kind of problem -- maybe a UTI, I thought, as he was dripping pee droplets every so often -- and he bunny-hopped up stairs.  Something wasn't right.

Our wonderful vet caught a couple of problems:  One was that he must have been in some kind of accident that caused neurological damage (witness the scars on his paws).  The other was that his bladder was misshapen and too large.  He wasn't able to get all the pee out by himself.  She cautioned me that he would need us to "help him go" and that the dripping might be a forever event.  She told me to go home, talk it over with my family, and decide if we could handle this.

Otis was already my dog.  I couldn't give him back.

Sentinel of my heart.  December 2010
 I've written about Otis before here.

Classic Otis.  December 2010
 And here.

While he didn't like the rain, Otis loved the snow.  December 2010
And even here.

Otis' last neighborhood walk.  December 2010
Of course, when we learned that Otis had untreatable cancer and had an estimated six weeks to live, I wrote about him here and here and here.

We had three wonderful weeks with Otis from the time we learned that he had cancer until he passed away two days ago at home, with his family around him.  I will be forever grateful for the care and compassion provided to him by our vet and for the fact that he was himself for those three weeks; only his last day was a day of decline, and it was quick.

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Thankfully, the vet had told me what to do if Otis passed away "after hours."  I did it, and the next day I took him to their office, said goodbye one last time, and sent him off for cremation.  I was surprised to get a call today saying that his ashes were here.  Bless our vet again, she included a sympathy card with kind words along with a paw print impression they made before he was sent on.

I've cried for my dog.  I've watched my family cry for our dog.  And I've sent off applications to rescue centers to adopt another dog because our hearts have room to love some more.

Wednesday, January 12, 2011

How?

How do you work on the imperative advocacy project for your son when your dog is dying at your side?

Tuesday, January 11, 2011

No snarkiness intended

Well, I did it.  I sent a letter requesting clarification of the response from the Executive Director of Special Educationa and Student Services regarding my request to verify that the new proposed conditions on my son's amended IEP are, in fact, legal.  She said they were.  I guess I just don't understand how the "Dear Colleague" Letter (Dec. 26, 2007) from the Office for Civil Rights, which says that conditions on an IEP of a student in such a program as our STEM program are illegal, can be superseded by something else.  Since the Director's response didn't include any reference to a document with that kind of power, I asked for it.

I also requested the exact phrasing of the Maryland State Curriculum for Science or Math that deals with breaking down an assignment into more specified directions and steps.  My son has an accommodation that includes breaking down an assignment with the proposed condition that says that this will be done for assignments "that are not part of a group assignment requiring group members to break down the assignment or activity as part of their 'group' grade."  STEM classes follow the Maryland State Curriculum.  If it isn't part of the Curriculum, why do we need such a condition?  Such a group grade won't happen.  If it is part of the Curriculum, in what grade(s) does it happen? If it doesn't happen until 11th grade, for example, we don't need to have it on the IEP for the next 2-1/2 years; we can deal with it then (if I haven't yet figured out how to combat it).

There is more to the question above than that.  How is the accommodation of breaking down an assignment when it is part of a group grade handled when the IEP carrier is in the general education?  If it's part of the Maryland State Curriculum, is that student told that the accommodation will not be made for certain assignments, similarly to my son in STEM?  (He never had the condition on this same accommodation prior to his starting in STEM.)  If my son were to drop out of the STEM Program tomorrow, would the two conditions on his accommodations be removed?

My son has lived with more stringent conditions on his IEP for the past two-plus years; these watered-down conditions are much less pesky.  The crux of the matter, I believe, is that there are conditions.  I just don't understand how the "Dear Colleague" Letter was strong enough to get the department to say that yes, the conditions must be removed but was so weak that conditions are still allowed.  It doesn't make sense.

I'll end this here as the above contains the gist of my questions.  However, the response from the Director contains much more that is distressing than mentioned here.  And I still haven't finished the Superintendent's homework.

Sunday, January 9, 2011

Reminder

Yesterday as I was cleaning out my daughter's AWANA bag, I found this, which she had written for one of the activities in her book.

Why I Love God

I love God because He is amazing
If He really wanted to
He could make elephants start flying
I love God because He is there for me
Every single time I pray
He will always heed


Note to self:  Remember this.

Saturday, January 8, 2011

Cycling

Sometimes, there's a lot of despair in parenting children with special needs -- it seems to cycle. Sometimes, when both children are "cycling," it seems overwhelming.

My daughter is definitely in the middle of something, and I don't know how to help her.  For my son, it's the school situation.  I received a response to my request for verification that the proposed amended conditions on my son's IEP are, in fact, legal.  I'm going to have to read the response again, several times, but the long and the short of it is that STEM, according to the Executive Director of Special Education and Student Services,  is designed for a certain type of student, and the description of that student eliminates addressing the special education needs of my son.

Sometimes, there's a lot of despair in parenting children with special needs.

Thursday, January 6, 2011

Precious Life of Faith, Hope, and Love

"He is here! 1:20 pm...6 lbs., 2 oz.,19 and a quarter inches. Perfect and precious. We are so blessed!"
So read the Facebook status of my friend, who had just hours before given birth to the most precious of lives: Luke.  
Like so many others, I stalked FB all day, watching for word even though I knew that he wouldn't enter this world until after 1:00.  It didn't matter.  I refreshed the page over and over again.  (To be honest, I started doing that the day before.)  I watched my friend's blog, just in case.  I carried my cell phone in my pocket, to be safe.
I prayed all day.  Lord, please.  Lord, please.  Lord, please.  Not my most articulate, but heartfelt.
And the thought running through my head, under all other thoughts and prayers, was the words of a friend of my friend.  That friend probably didn't know how far her comfort spread, but I will be forever grateful for the words:
"This one, she will keep."