Tuesday, November 11, 2008

Yes, I'm still here, part II

I think those of us on the spectrum are always living close to our outer margins. We use so much of our available resources coping with the sensory barrage and the emotional confusion of the typical outside world, that there is not all that much left.

Add illness, stress, or time pressure to that mix, and things fall apart.

Last spring, I ran, full-tilt, into the metaphorical wall.

My younger son was falling apart and the school was playing its typical delay game. (Fiddling while Rome burns, anyone?) My father went into acute kidney failure and almost died. He is now only alive because of dialysis 3 days a week. My mother needed urgent spinal surgery and has not fully recovered, either mentally or physically in the past 4 months. Add to that, the fact that they live a 3 hour plane ride from me and I am their health care proxy.

By late summer, I was a wreck.

I made the difficult decision to stop working for a while, an extended sabbatical. I have been working in my profession for 22 years, in this practice for over 10. It is a job I have always loved and one that is emotionally fulfilling, as well as emotionally draining. But I realized that I had hit a point where I was taking care of other people in every facet of my life. And not taking care of myself.

Two months later, I am starting to feel better. I still have to fly down to where my parents live and help them make difficult decisions about their safety and their living situation. But my younger son is *finally* on an appropriate IEP, getting the appropriate help in school and for the first time since last year, I am seeing his face light up in smiles.

I know how blessed I am. If it were not for my incredible, patient, supportive, loving husband, I wouldn't be here.

Friday, July 11, 2008


My 12 year old son can charm the rattles off a rattlesnake when he wants to. Other times, he retreats into himself, avoiding confrontation like the plague.

He can't remember where he left his backpack/towel/glasses/shoes/book/etc.

He gets easily frustrated at the first roadblock of any task.

He still has difficulty tying his own shoes.

. . .

And yet he very calmly and competently flew on his own from Boston to Portland, Oregon yesterday, easily navigating the transfer/change of planes in San Francisco.

According to my dear friend who picked him up at the Portland airport, my son was 'holding court' with a group of the flight attendants as they all walked off the plane together. Now, he *didn't* fly as an unaccompanied minor and the attendants had no responsibility to take care of him. They just gravitated toward him. He must have been in full charm mode.

For the next 3 weeks, he will be with his best friend's family touring the pacific north west in their RV.

Not too shabby for the kid who was nearly destroyed by 6th grade.

Friday, May 30, 2008

I'm still here. . .

It's been a difficult year. Since the fall, I've been dealing with one thing after another, and it's taken its toll, particularly in my participation in this blog and the greater internet sphere of the Autism Spectrum.

In September, I broke a bone in my foot and spent most of the fall on crutches.

My younger son 'crashed and burned' in 6th grade and I've been advocating for him since October, watching his anxiety spike and his self confidence erode.

Early in 2008, I had some abnormal test findings on a routine mamogram.

In the Spring, I got involved in an advocacy project to fight for the middle school's newspaper. Little did I know it would involve nearly every waking hour and meeting with city, school officials, and parents, putting me in 'center stage', when I prefer being behind the scenes.

Last month, my father had orthopedic surgery, was sent to rehab, went into acute kidney failure and nearly died. As his health care proxy and the only member of the family with knowledge of the health care system, it falls to me to coordinate his care and advocate for him.

In the process of dealing with his medical needs, it became clear to me that my mother's cognitive status is slipping. And she also needs urgent surgery.

So, my resources have been taxed to their utmost, with nothing left to offer to this blog or to the autism community. For that, I feel badly. At least many of the issues that became issues this past year are now resolved.

My foot healed.

The paper was saved.

My son has an appropriate IEP (though it took from October, when I raised these issues with the school to May until we had his IEP meeting) so 7th grade won't be the wasted year that 6th grade was.

It is highly likely that my own health issues are resolved as well.

What is still highly distressing is my parents' health. My father is on dialysis, which he is not tolerating well. He's been in and out of the hospital 3 times in the past month, is there right now again. My mother's anxiety and depression are decreasing her cognition. She is also experiencing leg weakness from a back problem and is a falls risk, but refuses to use a walker or a cane. They live a 3 hour plane ride away, and advocating for them largely falls on me to accomplish via telephone. I've already flown out there for a week, returning home thinking they were stable, only to find out they are not.

I have appreciated the comments of support and the emails I have received from commenters. Thank you all very much.

I am hoping for a boring summer and a time when I can recharge my depleted emotional batteries and be able to be a better blogger and aspie-advocate.

Tuesday, December 18, 2007

Round 3. . .

I've been blogging of late about my younger son, E. (Rounds one and two, here and here. If our family lives on the spectrum with P and I on the Aspie side of the ledger, and my husband on the (possibly) ADD side, than E is somewhere in the middle. In the alphabet soup of "diagnoses", he has NLD. What I know is that he's a bright, articulate, motivated kid who struggles with organization and output.

Yesterday, he came home with his interim progress report (midway through term 2) for his 4 core classes, Language Arts, Social Studies, Math, and Science. He is currently failing Language Arts, Math, and Science.

Looking at the components of those failing grades, I am struck by a pattern. Work that he had handed in: A's and high B's. F's (automatic zeros) for missing assignments. If it were not for the missing work, he would be doing extremely well in all subjects. (Well, except Math, but that's another conversation for another time.)

So, one could look at that pattern and name it laziness. I can almost hear the conversation: "E. has so much potential. If he would just apply himself. . . "

Let me tell you something about my younger son. He isn't lazy. What he is, is hampered by a brain that doesn't multi-task and doesn't shift attention (transition) rapidly. What limits E the most is his impaired executive functioning. He has little ability to employ systematic strategies, so whatever he does, it's like he must start from scratch each time. That's evident whether he's looking for something in his room, searching for a homework assignment in his backpack, or organizing for homework assignments.

Penalizing him for his lack of organization and his poor executive function will only drive a dangerous cycle that will ensure continued failure for this child who has enormous potential.

Thursday, December 13, 2007

Success builds on success

I had a parent/teacher meeting this morning with my older son's special ed resource teacher. P is now a 9th grader at our (large) public high school. The building itself is overwhelming. To an outsider looking in, it looks a bit like the Escher painting . Then, it's enormous--2,000+ students. I had all sorts of worries even before thinking about the curriculum and the challenge that might provide.

The things we worry about are almost never the things that actually happen.

P. came home with a first term report card with mostly A's and a few high B's. This with a demanding schedule, including 2 languages (French and Chinese). His teachers uniformly consider him a delight in class and his math teacher has recommended that P move into honors math. (We're still considering that.) To top it all off, P was nominated and accepted for a peer mentor program where students are called to orient transfer students to the high school.

I was floored. Not because I didn't think P capable. He is and I know that he is.

It's because the early years were such a struggle. He was in such distress all the time and as a parent, I felt helpless in the face of his depression and anxiety.

Teachers complement me all the time on what a wonderful job I've done in parenting my AS kid. I'm uncomfortable with that kind of praise. I parented my *child* in a way that respected him and responded to where he was. Not because he is an 'Aspie', but because that's what I needed to do as a parent of any child. P has had one huge advantage: I lived through the anxiety and the stress, the sheer confusion of feeling out of phase in the world. And all without the benefit of recognition and assistance.

Early on, my husband and I made a decision to make home a safe haven. There was enough stress in his daily life, at school, with peers, that he needed a place to simply *be*. That was home.

I keep harping on this, but managing anxiety was the single biggest factor in P's success. Anxiety is the terrible background noise that interferes with every aspect of an Aspie's life. It is a set of blinders. Full arm and leg shackles. A prison cell. As long as his anxiety level stays under control, P can be his happy, goofy, gentle-giant self.

I hope and pray that P continues to feel safe, loved, and supported; that he has the grounding he needs to keep moving forward in his life.

Wednesday, December 12, 2007

Round 2. . .

In my last post a little over one month ago, I talked about my younger son's difficulties in middle school. We are now one marking period into 6th grade and week by week, the picture is becoming clearer to me.

His report card was all over the map--a mixture of A's and C's. On the face of it, that's not such a bad thing--a "C" is, after all, considered a passing grade. However, it's the pattern of the component scores leading to his quarterly grade that is one of the issues.

My son struggles most with organization. Both personal organization (aka--his backpack is a rat's nest) and cognitive organization. In assignments that have a high degree of structure, he does well. *Even if the work itself is fairly abstract.*

If the assignment is highly unstructured, than he will struggle with it. It's often not the content. Most often it's that he doesn't understand what is being asked of him. If I can get to him and look over his assignment before he's used up his reserves, I can often rephrase the question and the lightbulb clicks on.

When I see how like swiss cheese his individual marks are, then I understand there is a problem. For example, in Math class, he received A's and B's on his homework assignments, but did extremely poorly on quizzes. That brought his term grade down to a C. He didn't understand *how* to study for the quizzes, though he seems to understand the content when I ask him to show me his work at home.

The same thing occurred in Social Studies. (I discussed the geography problem in the last post.) In addition, students receive a 'O' on homework assignments that are not turned in on time. My son constantly misfiles assignments in the wrong binders and then can't find them to turn them in. One or two zeros can torpedo even an otherwise perfect term.

Understand, it's not the grade I care about. What I care about is that the stresses of this year have turned my eager, school-loving son into an emotional wreck. He's anxious and depressed and often explodes at home into anger.

This is what I need the school to help ameliorate.

Thursday, November 01, 2007

How do we learn how to learn?

How do we learn how to learn? It seems like an odd question to ask. But it's one that I've been mulling over in the context with my younger son. With a learning profile similar to his brother's (and mine, for that matter), he struggles with organizing and consolidating what he knows.

If you want to put a label on his profile, the alphabet soup that the psychologist came up with is "NLD", or non-verbal learning disability.

In practice, what this means is he has trouble when:
  • the work moves from the concrete to the abstract,
  • an assignment is ambiguous,
  • he is given a complex project that must be broken into component parts,
  • he must organize and synthesize information
In elementary school, he did well academically because the learning was almost always more concrete than abstract, the assignments specific (easier when the only demands come from a single teacher), the projects organized for him, and models of finished work provided. This year, he started middle school and moved into a larger building with 4 times the number of students and moved from 1 main teacher to 6 teachers.

He is a bright young man, articulate, eager to learn, and with an enormous memory. To any teacher, he looks the model of a successful student.

His social studies teacher contacted me last week because he had received two consecutive 0% on geography quizzes. The teacher asked my son why he thought he had done so poorly and my son's answer was that he didn't have time to study.

That's not really the problem. The problem is he doesn't understand what studying is, nor does he know how to do it. It took me a little bit to figure this out. I watched him attempt to study his geography. What he would do was stare at maps for a good half hour to forty five minutes and declare himself done.

Today, I hit on a metaphor that I hope was helpful to him. If you are target shooting and want to hit a bull's eye, you would want to use a pistol versus a shotgun. The pistol is more accurate. With the shotgun, you could pepper the target with shot and hope that maybe one of them would hit the bull's eye. That's how he was studying. Look at everything, but without having the context, and hope that he would answer the test question right.

I taught him a 3 step process to studying today:

1--Define the target
Find out what material you are responsible for learning for the next test. Be specific. "I need to identify all the major rivers in western Europe" is more specific than "I have to know the geography of Europe."

Practice, staying focused on the specifics that you'll need to know. Study actively, not passively, ie, *do* something rather than just read. Answer practice test questions or use a sample map, for example, to fill in the blanks.

3--Assess Look at the how much of the material you got right. For example, returning to your atlas, look at the number of Rivers you answered correctly and those you answered incorrectly. Highlight your wrong answers and go back to step one. These are your new targets.

This is probably obvious to many, many children. It's just not to my child. His mind hopscotches all over the place, following thoughts that interest him. This, to my thinking, is a good thing. He is highly creative and takes imaginative leaps. However, he needs to learn how to do the more systematic thinking or risk failing in school.

I wish someone had taken the time to teach me study and learning skills. It would have saved a lot of heartbreak in college and graduate school.