Wednesday, March 31, 2010

Three Things, One of Which is a Comment on the Current State of Max's Asperger Storyline on Parenthood

Wednesday, March 31, 2010

Three things are on my mind this warm spring morning. I note them below.

Songbirds. Arriving downtown a little early today I walked from my bus stop to my favorite coffee shop and then on to my office. If you are ever in Lansing, MI Biggby’s on Ottawa Street is a fine place to meet, mingle and drink coffee, I highly recommend it. The conversation with the way over-educated barristas is worth the price of admission. Anyway, as I travelled my well worn route the air around my path was filled with the sounds of singing songbirds. Songbirds are coming back it seems and it is something to be happy about.

When I was a child growing up in the swamps of southern New Jersey I remember the vibrant song of the birds. I lived across from a gas station. Each day starting first thing in the morning the owner would punctuate his trips to the pump to fill up cars with his take on his favorite songs. While I would hear the owner singing his lungs out, I would also hear the birds providing graceful filigree to that earthy throaty voice. Together they were beautiful. This aural blend remains one of my fondest childhood memories.

Up until about 5-8 years ago I didn’t hear the songbirds very much around my home in my little suburban neighborhood in Michigan. The crows seemed to have driven them out. All I would hear when I headed outside each day was caw caw. The loud insistent almost dinosaur era clamoring of the crows was not very pleasant.

When West Nile virus swept through the area almost all of the crows died off. You would see them in groups of 3 or 4 lying dead on the macadam surface of the street. It was scary. But eventually the fear wore off. Nobody in my neighborhood keeled over from West Nile. But suddenly there were songbirds again, in abundance.

Some crows have returned but the songbirds are still present and still singing at the tops of their little lungs. Today is already bright with the promise of 70+ F temperature here but the voices of song birds trilling in every nook and cranny just makes the day electric.

Autism Awareness. Because I got downtown early I was able to look at the USA Today sitting on a table at my favorite coffee shop. In the Life section there was an article about Songs of the Spectrum. http://www.usatoday.com/news/health/2010-03-31-autismsingsos31_ST_N.htm This is an effort by a parent of an Autism Spectrum child to build awareness and to provide benefit funds for autism efforts. There was a chart included in the article that indicates early autism diagnosis will reduce the cost of autism support and care for a child by 2/3rds over her/his lifetime. The chart also mentioned that screening is possible starting at roughly age two. From personal experience I can tell you there is real truth in this. If you have suspicions about whether a child you know is impacted by autism don’t delay in following up. Primus was not diagnosed until age 12. Having an earlier diagnosis would really have made a significant difference in his educational experience. April is Autism Awareness Month.

Parenthood Rocks. Sticking with the autism storyline Parenthood is showing something that my wife and I have experienced first hand, the involvement of a child with Asperger’s in team sports. Going this route is not for everyone and it does not guarantee a positive or successful result. However in our case it has had meaning and has provided growth that we really wouldn’t have seen otherwise.

In the series Max is on a softball team. He cannot hit, he cannot catch and he feels isolated (or perhaps mistreated is the better word). The father Adam Braverman finds another family member, Max’s cousin Drew that is willing to practice with him and Max. As they practice Max begins to develop some basic skills and seems to enjoy it when he gets the technique needed to make a catch. My hope is that with these skills he can make a connection with one or two of his team mates. It would also make sense to show some other parents reaction. It is amazing the win at all costs mindset that starts at the very earliest level of children’s sports. I digress.

Primus has been playing hockey for 6 or 7 years now. His skill set has through the early years was at the very lowest end of the spectrum for his team. But one thing about his variant of ASD is that he listens with precision to the details of a coach’s instruction. As he has grown he has moved slowly into the mid-pack level of skills for B hockey. More importantly he values his “team”. Maybe Max will follow that route in the storyline.

Primus’s use of the term of team is not another phrase for his friends. He mentally puts them in a box different from people at school and people he interacts with at other settings. But they have a higher value than just classmates to him. Further as the years have gone on he has learned to engage in some locker room conversation. Now mind you he punched someone out this year that criticized his playing but the same kid received similar treatment from a couple of neuro-typicals. More importantly he makes jokes and wants to be in the room with the team without adults being there. This is a major step for a kid with Aspergers.

My hope is that the story line on Parenthood will address some of this. Being on a team for an ASD kid is not easy but sometimes it can provide opportunity for interaction that would never occur otherwise. It is not a cure, a fix and it is definitely not easy. It is not easy for you as a parent watching your kid being outclassed on the field or on the ice. It is not easy for your kid to take the crap for poor play in the dugout or the locker room. But one thing about ASD kids is that they can be determined and focused. They will keep working until they improve and in the end they may find a benefit from the effort that is worth the tough parts of the experience.

Just remember when you have seen one kid with Aspergers, you have seen one kid with Aspergers. Every one of them travels a different route.

Saturday, March 27, 2010

Death on the Road

My correspondence with friends has dropped off over the past six months to a year. I hold many regrets about that. So easily I have allowed myself to lose my margin of time for jotting down the note to a dear pal or simply posting a “hey I miss you “e-mail. Surprisingly not everyone has gone this route and I still get e-mails. The other day I got a note from someone I care about greatly, someone I really love because of who they are. (You should read into this that they are a much nicer and much better person than me and I wonder why they keep me as a friend). In response to that little popcorn post I fired off a “write me a real letter and I will respond” note.

Well she did write me a real letter. The letter was a very loving capture of what she felt about the passing of her grandmother. The letter was sweet and warm and tinged with the loss that we all feel at the passing of someone who had been an important part of our lives. There was also a juxtaposition of her life to her grandmother’s. Finally and maybe rhetorically, maybe not she asked me if I had ever watched anyone die. I responded.

I may have missed the mark in my response. Right now I am feeling awkward about my reply. Still what I wrote I really meant. Over the past 36 hours I have kept thinking about what I had written. My response to her beautiful post has been so much on my mind I decided to alter my response letter and post it as this week’s blog entry. Of course I have tried to remove all identifying information pertaining to the writer. Here is the text of my response beginning just after the salutation.
Like you I have watched a person die. In actuality I have seen several people die. In my time on this earth I have seen a bit of death’s spectrum. As you know I am not an ER room nurse or an EMT. My exposure to death has thus not been so high as to make me callous to the event of life’s end. The passings I have seen I remember vividly.

On the one hand I have seen a beloved aunt die. Her family was at her side despite the hour being very late. My wife and I had driven for hours for one last visit. Within five minutes of our arrival she quit fighting and was gone. All the care and compassion a matriarch should be accorded was in full play. Her children and grandchildren nieces and nephews were about the place. Tears of love flowed. The event was filled with real love, compassion and care. While I felt sad her death came at a time appropriate in the grand scheme of things, she was suffering and she had fought the good fight long enough. But when you asked the question of whether I had seen a person die that is not the death I remember. The one I remember I will recount below.

As you know I have faith, but I am not sure my faith is as strong as yours. Despite giving in and responding to an altar call or two, I never felt the electricity of a full and complete knowledge of God as I stood in the front of a church with a pastor’s hand on my head as he prayed for me. The scales didn’t fall off my eyes after being struck blind on the road to Damascus. My journey is one that is continually tested, continually challenged. My faith is tempered by what I have experienced and while I am a Christian, that is I a believer in the Christ and in his red letter affirmations (you know the stuff Jesus is directly attributed to have said) I have real moments of doubt. There are many paths in this life and I do have trouble ascribing that only one opens the door to the fulfillment of God’s love.

I am glad you have peace but I am not sure I will ever have that, at least not in a way that resolves all the mental and philosophical conflicts I try and work through daily. My path to faith is one walked with constant fear and trembling as I set about working out my own salvation. When I read the New Testament I see that the founders of the early church understood that the search for faith is never easy, Philippians 2:12-13.

On actually seeing death I offer the following. Experiencing another’s death is an odd memory for me. The first time I watched someone die was as unexpected as it was ghastly. I was in my second year of law school. The day was a cold sunny Saturday afternoon in March. It was long enough ago that there were no VCRs and cell phones. Both of these facts played a role in the events of that day.

In the days pre-VCR if you wanted to see a “classic” film you had to watch the local film societies’ newspaper adverts to see what was showing at their weekend screenings. Living in downtown Detroit in my 17th floor tenement apartment located in officially blighted neighborhood my nearest film society was run by the Detroit Institute of Arts. In the Friday section of the Free Press there was a listing that on Saturday at 1 p.m. the Detroit Film Society would be showing Robert Altman’s McCabe and Mrs. Miller.


McCabe was an anti-western; it was maybe to only real anti-western. In the film the hero runs a brothel and dies a cowardly death. The audience finds itself rooting for him to shoot the bad guys in the back. Such actions were clearly not the cowboy way. It was a film of its era and the chance to see it on a big screen was a rarity. Having read the Free Press on Friday morning I saw it was showing. As we were having coffee before our morning classes I convinced my friend Andi (Andrea) to go. As I remember it she loved Robert Altman movies about as much as I did. We agreed to meet the next day early, which by our sense of time and calendar was a highly flexible term.

Andi and I met that Saturday morning at the University of Detroit Law School Library. As should be expected, we were running late. What else was new? The law library sits on East Jefferson Avenue near the base of I-75 South as it passes through downtown Detroit. Andi lived on the eastside and I lived downtown so it was the ideal rendezvous. The Detroit Institute of Arts is just a couple of miles north of the school through a warren of urban blight off of I-75. Trying to insure we would make the opening credits we jogged out to Andi’s little bullet shaped Civic.



Her car was the original Honda Civic; it was a two seater and had a steering wheel that was a mile across. We were running late as always and we debated whether we should smoke our joint then before we drove to the movie, in the car on the way to the movie or outside the theatre. We decided to wait. The rationale was that this was Detroit and what city cop in his right mind was going to bust a couple of people for doing a doobie in the Cass corridor? In retrospect it was a far better choice than we ever would have contemplated.

We jumped in the car and Andi drove, actually she drove like a bat out of hell. The Civic proudly wore a bumper sticker that a mutual friend had affixed as a testament to her driving skills which read, “I Break for No Apparent Reason”.


Merging onto I-75 we were headed up to Warren Avenue. From there we were going to work our way to the DIA. Hitting speed in front of the Lafayette Clinic, the Wayne State University mental health facility we were at a solid 70 m.p.h. Andi tapping the steering wheel and me the dash as we sang along to Tom Petty’s “Even the Loser’s Get Lucky Sometime”. We sang out of tune and loud, like was there any other way?



Just as we were hitting the song’s crescendo a body came off the hood of the car in front of us and flew over our Civic bouncing off the car behind us rolling brutally in the roadway. The body of that man is suspended in mind forever passing over the windshield of the Civic. No I didn’t see his face. For the life I me I can’t tell you if he was in pain at that moment. I remember his clothes were gray and he had a jacket on. But when I rewind the movie, and it does come to me late at night more frequently than I would like, it is just the shock of seeing a body there in mid-air that stands out. It is as if the cassette player went silent right then. It was if we had slipped between the light rays of the sun into a moment of unreality. All I can say for sure it is that the man was airborne and twisted in ways not meant to happen in nature.

Wrenching my head around I saw the man’s body rolling down the road. Andi was screaming and in tears. I think she was shouting something like “What was that, did you see that, what was that, what do we do?” I was not mentally there at all, shock perhaps, but my thoughts focused in a couple of seconds and I told her get off at the next exit. I didn’t care if we were in the heart of the ghetto we had to call 911. Andi was crying and I was shaking and sweating as we pulled off. I honestly can’t say what my body was doing right then.

Trying to find a pay phone in a ghetto in 1980 was not an easy task. We rode around through neighborhoods that looked like Sarajevo after the worst of the fighting. Boarded up facades and burnt buildings were everywhere. It took a couple of minutes but eventually we found a phone and put the 911 call in. I still wonder what diseases I picked up off that handset.

It was our mutual thought that we had better go back to see if anyone had helped the poor bastard. I wasn’t sure what I could do I had no first aid training. It wasn’t for voyeurism that we returned, we also thought that the cars who had hit the guy might need witness statements. Even if we were sometimes stoner law students we took our obligations under the law quite seriously. We were witnesses.
After a drive south on surface streets which seemed to take forever (time works funny in dire stress doesn’t it, things just hang there and everything seemingly takes so long), we eventually got on I-75 north again and came back to the spot by the Lafayette Clinic. The police had arrived on scene and an EMT was just getting there.

I don’t know how to refer to the man struck by the car, the victim, the man, the guy in gray so I guess I will just go with the man. When we pulled up the man was lying on the curb and a police man was over him and had a blanket covering him partially. From what I could see he was twitching and bloating up with blood that must have been pooling in the spots where he had taken the body hits from the cars that had struck him. His breathing was noisy, irregular and kind of gurgling maybe. Then the things his muscles and body were doing just stopped and the EMTs didn’t seem to be in a hurry anymore. When they put him on the stretcher there was no sense of urgency. He was gone.

Surely I must have given a statement to the police, but I don’t remember it. I know that the time for the movie came and went and we were still at the roadside. Eventually everything finished up and we left.

We drove over to the Union Street bar on Woodward. I am pretty sure we didn’t smoke the joint it just didn’t match what we had experienced. Instead we drank shots of nasty burning liquors chasing them down with beers. We drank a shitload of them. And we cried and we talked about how fucked up watching the guy twitching by the road was. I think even though we weren’t a couple we went back to my apartment and had hard nasty sex and even that didn’t feel good.

I watched the paper for days to see if there was a blurb on what happened. Detroit however is a big city and one vehicular death doesn’t merit much mention. In the end I think I found out the guy was actually a patient at the mental clinic and had been released that morning. Nobody could really come up with a reason why he was trying to cross the eight lanes of I-75 on foot trying apparently to get back to the clinic from the other side of the highway. He had not been identified as a suicide risk. No one knew the why.

Did the experience give me faith or challenge my faith? It didn’t give me faith for sure, but I don’t think it really impacted on my faith. Watching that man die did something to me that has happened only a couple of times in my life. It focused me on life and its difference from not life. It made the world seem a little more real for a couple of days. Colors were a little clearer. The air felt a little more real on my skin. I felt forced to be in the moment and to be alive. The victim’s death was not one that seemed anything but mundanely horrific, still to me it showed the world was anything but mundane. Eventually that feeling faded.

When I was almost killed in an automobile accident the feeling came back. When I went on a luge run in Norway the feeling came back. No matter how I tried to hold onto that feeling it faded. But I have the wisps of the memory from those events to remind life matters.

Watching a loved one die is very rough indeed. This is especially true when the death is slow and when bits of that person’s life are stolen incrementally. Alzheimer’s is one of the cruelest of death’s emissaries. It is not alone. I have watched friends die of AIDS and that in many ways was the worst from my perspective. No matter how your rational mind tries to process the death it is filled with pain and conflict. There are tears that should have been cried but remain locked away in all of us.

I have known people who possess the selfless nature you describe when talking about your grandmother. If such a life of love and sacrifice was her choice or a choice she came to embrace then it can serve as a point of reference for how your life might evolve. Still you really don’t gain some greater awareness or share some incredible value by living such an almost monastic life if it is not an appropriate choice for you. “No one else can give me the meaning of my life; it is something I alone can make. The meaning is not something predetermined which simply unfolds, I help both to create it and to discover it, and this is a continuing process, not a once and for all.” Milton Mayeroff, On Caring, p 62. Being other focused is fine but you have to be you for it to matter.

In one larger section of the above book Mayeroff takes time to talk about what he feels are critical components of caring; they are trust, honesty and patience. This quote seems relevant to what your were talking about.

Courage is also present in going into the unknown. By following the lead of the subject matter or the direction of the growing child, I have no guarantee where it will all end or in what unfamiliar situations I will find myself. The security of familiar landmarks is gone and I cannot anticipate fully who or what the other will become or who I will become. This is the courage of the artist who leaves the fashions of the day to go his own way and in so doing comes to find himself and be himself. Such courage is not blind: it is informed by insight from past experiences, and it is open and sensitive to the present. Trust in the other to grow and in my own ability to care gives me the courage to go into the unknown, but it is also true that without the courage to go into the unknown such trust would be impossible. And clearly, the greater the sense of going into the unknown, the more courage is called for in caring.

The total subjugation and suppression of who you are or who you have been does not benefit anyone you care about or the world. If you grandmother’s selflessness came from her courage and not from stereotyped sex roles imposed by the society and faith of the time many decades ago when she was young then following that path may make sense. If her role and her apparent selflessness were imposed on her from outside, then maybe it does not make sense for you at all.

We all change. Our musical tastes may shift radically or our interest in music may die out altogether. Our friends will come and go. The space we occupy in terms of dwelling and family will vary. But the key is to have the courage to face these things and have the focus to work toward the meaning of your own life in fear and trembling, if need be.

Daylight on the Morning Fields

Sometimes when I am driving about I pick up a mix disk I made a long time ago and throw it into the CD player. Today as I was on my way to breakfast before a day of errands I threw one of those disks in. Bruce Cockburn starting singing,

Don't the hours grow shorter as the days go by,

You never get to stop and open your eyes

One day you're waiting for the sky to fall

And next you're dazzled by the beauty of it all

When you're lovers in a dangerous time

Lovers in a dangerous time

Yeah sometimes a lyric will just blast beyond the mundane questions. Before I heard this I was thinking about where I had stashed my shovel at end of last fall. Suddenly I was looking out the window at the promise of spring and the living awakening things that surrounded me. A good lyric will do that for you. Enjoy. PS You don't have to listen to the post performance banter but it is interesting.

Thursday, March 25, 2010

Why?

The question of suffering is one that I have not pondered much. Mostly I have taken the position that suffering just is. Children die of leukemia. Populations of people are subjected to genocide in death camps, dark jungles and other hostile environments. My feeling was that there is no why, again it just is.

Recently I have been reading a book dealing with the cabbalists of pre-inquisition Spain. Starting around the 10th or 11th century it seems they began focusing on the issue of suffering, especially the suffering of the innocent children. While comfortable by standards of the world at that time, disease was omnipresent and hope for relief or cure of the afflicted was limited. An intellectual looking at her world could easy wonder why.

As the next several hundred years evolved the discussion of immense pain and suffering moved from theoretical to personal. This followed as the inquisition first in Spain and then in Portugal inflicted an early version of the final solution on the Jewish community of which the cabbalists were a part. In the period of the Inquisition the switch from tolerance to torture came quickly, it did not take a generation to pass to become the most unholy of purportedly holy exercises.

The rapid change for these people from secure to fleeing expatriates with no destination made me start thinking. While I may be comfortable, more or less in this downward economy, it can change at a moment’s notice. Suffering on a grand scale could become real tomorrow. When you let your mind go down those threads of logic it isn’t a great leap to the big questions, the imponderables, like why is there suffering.

Wednesday, March 24, 2010

Empty Bells

Wednesday, March 24, 2010

We are constantly formulating statements for the present. These are smothered in language and are meaningless and inconclusive parts of a debate that may or may not matter in the long run. Nobody listens to anything except when it agrees with their own prejudice.

Merton, 03-02-66 Journal (Paraphrased)

Sometimes I think I should just live detached from the political world. I dream from time to time of uncoupling the TV and the internet and just reading books for information. Books to be read must be at least 25 years and thus by their mere continued presence on the book shelf at the public library show their worth. Oh, they must be dog eared and smudged showing active reading by previous patrons. If a book is of some age and is still being read then maybe it does have worth. Nonfiction of course is preferred we are talking about ideas here. However some fiction will be considered. This would be because as is well known some ideas were so powerful their statement had to be crafted in fiction to allow their dissemination without the author being impaled for being a heretic.

Thursday, March 18, 2010

Aspergers and the Issue of Labels


Posting about Asperger’s in any manner brings out a variety of responses. Luckily none of my readers take the Dennis Leary approach of using broadside humor to obscure the reality of what kids who meet the criteria are living with. Unlike many other people I don’t have an issue with Leary. He is using Asperger’s the same way other comics use obesity, i.e. it is merely fodder for cheap shot visceral gags. Not all obesity is the result of a failure of will or personal character either. However, I am glad that the people who respond to me are thoughtful and offer measured commentary.

In that regards I got an e-mail in response to my posting on Parenthood. I have edited it just a little so that the author is not readily identifiable. But I think her e-mail merited more that just a hidden interchange between she and I. The issues she raised are some of the key aspects of the debate on Asperger’s. Here is the e-mail and also my response.


Dear G,

I wanted to respond to your blog but I didn't want to sign up for a Google account, so since I know the author personally I thought I'd just share my thoughts with you. I hope nothing I say will offend you as I do not have any first hand knowledge of Asperger's Syndrome except that I am a teacher familiar with a range of conditions. My own child had an IEP all throughout her school years. She was/is a stutterer and while it is dramatically different than what you are dealing with, I know the heartache a parent can have when their child is not "like everyone else."

Since this blog entry was related to a TV show, I was reminded of another show I recently watched, some doctor show where the dad was in denial about his 11 year old daughter’s schizophrenia. He felt like he caused it. I immediately go there whenever my children have any kind of flaw. I assume they must have gotten it from me.

I wonder if there has ever been any studies on the parents of Asperger Syndrome kids and any connection to high intelligence. I always suspected you were pretty smart. (They told us in our teacher classes that Bill Gates had Aspergers).

Aspergers Syndrome was never even a diagnosis back when we were kids was it? And if it wasn't and kids still had it but it wasn't diagnosed as such, didn't the kids simply grow up and get on with life the best they could. Wasn’t it kind of like before ADD/ADHD kids were diagnosed and put on meds?

I'm not trying to minimize your son's condition in anyway but sometimes I think that maybe labeling kids with these diagnoses might make the parents and the kids feel worse. These names are so powerful. As a teacher I see kids with psychological and physical limitations but I can tell you that I have always tried to see the child as a person and not as their condition and hopefully your son's teachers can do that as well.

Bea,


Dear B,

I would not be offended by anything you might say in a considered discussion. I understand the label issue you have raised and it is one we considered long and hard before getting involved with the whole machine of psychologists/ASD consultants, diagnoses, etc.

In a way we were forced to make the choice we did due to the strains on public education here in Michigan. Without a diagnosis the chances were quite strong that Primus would simply be considered a troubled child and shunted to the edge of the mainstream. It was already happening when we took action. We know and his SAT scores show (he scored median for college bound high school seniors when he took that test in seventh grade) he is a bright kid.

I make the above comment about being shunted aside without reservations as to the accuracy of the statement. Primus had begun demonstrating very clear and evident ASD traits in the second grade. However despite what was supposed to be an intervention with a school social worker (who I have since been told had been trained on ASD issues) not a word was said to us about larger issues beyond shyness that might exist for him.

The intervention which was ostensibly to try and aid him building social connections, something it was evident he did not care about. The intervention brought out no referral or suggestion for an evaluation for a condition like ASD. Other issues tied to the disorder were clearly evident at that time. A review of our notes from past parent teacher conferences show that symptoms were being referenced by his teachers that nobody in the school social work/psychologists office thought to tie together.

Every one in the system was more than happy to leave him to fend for himself despite problems with auditory stimulus, limitations with fine motor skill function, extreme clumsiness and grand scale social ineptness. I have since had contact with others in the district that have alerted me that become of economics involved in working with disabilities the schools do not want to find a diagnosis of Aspergers if it can at all be avoided; it is costly.

The way we became aware of ASD was though my wife. One day as my spouse who works at Michigan State University for the Dean of one of the colleges was sorting through prof-net queries (queries seeking thoughts on scientific questions sent out to universities all over the place) to forward on to different faculty she came upon one researcher who was seeking learned comments on why the Aspergers syndrome in boys was growing at such a rapid rate. Wondering what Aspergers was she then looked up the parameters of the diagnosis and brought it to me. Looking at what she found and how closely it aligned with our son’s behaviors I agreed we should get him evaluated. The psychologist we eventually found told us he hit the diagnosis on all measures.

We then called the school and asked to set up an evaluation for an IEP. There response was that they would contact us at a later time. We waited and we waited. At that point I did my legal research and figured out that without a written demand the school would not have to act. Post haste I sent the demand letter that sets the time limits for conducting the review. It is reasonably certain he school would not have moved forward without that little certified letter. When they did the review not a single drafter of the seven reports the school district created did anything other than acknowledge the condition.

Since the IEP has been in place we have been able to deal with issues that would have caused Primus endless grief and bad grades in the past. One teacher last year insisted on giving him assignments that repeatedly called for him to place himself in the shoes of another and write about their emotions. Duh, we kept writing her e-mails indicating that Aspergers kids are not tied into this level of emotion so as to be able to write at length on issues of sympathy and empathy. Without the intervention of the advocate the teacher was hell bent on flunking him because he would not do this kind of work. We asked the teacher if he could do technical reports or more straightforward book reviews before getting the advocate involved. We were rebuffed and she was having none of it. The advocate then stepped in and took over and created the writing assignments.

In our day in school, in our more rural than not environment, a good caring teacher could read these differences in children and work out a way to bring along a kid who had special needs and unique talents to a point that their life would matter. In a urban environment where the curriculum is driven by the no test not taken standard there is no margin that will allow a teacher to do that kind of thing. Without the club that the label is and without the sanctions that follow from not following an IEP my child would have been written off as a troubled and troublesome ass.

Forgive me if I sound a little hostile toward my district the experience has truly been a mixed bag. I have worked with some very good people in our system here. However I think the state of education in Michigan is such that economics drive decisions about child welfare. It is in every administrator’s best interest to avoid the costs associated with IEPs.

You mention the comment I have heard often about why there is such prevalence now of this disorder as opposed to when we were in school. Two or three things come to mind. One is that with the growth of psychological and the empirical studies of behavior we have broken down that much larger class of behaviors that we used to define as “different” behaviors. We can separate things out that used to be lumped together. Second I believe that our environment has impacted us in ways that with the more concentrated toxicity manifests more readily. Hey I have heard you say in our posts, that you believe there is something in the Delaware Valley that causes physiological issues. You had the onset of your illness in your twenties. I had prostate cancer at 50 which is really young for that malady to show up. Do I blame the DuPont stench, well maybe. Could the crap we inhaled as teens have impacted our genes and cells so that it has altered the next generation, well definitely maybe.

I am not an advocate here for anyone but my son. But what I know is that in our case the label has helped more than hurt.

There is a point to your comments. It is clear that you care for kids in your charge and other kids dealing with the academic process. I am sure every single day you are engaged in a balancing act with regard to each child you interact with. With all the labels and programs and requirements sometimes you wish it could be resolved in a simpler more holistic way. Me too. But our world is not the world we lived in as kids when a look from a seasoned gym teacher would stop a kid dead in his tracks or a caring history teacher would pull you aside and work with you.

Our society as a whole outside of engineering doesn't have places for the socially inept but technically skilled anymore. We are too wired a world for that. With Facebook and cameras on every phone the awkward are at risk. I digress.


Sincerely,


G

Wednesday, March 17, 2010

Light



Light fades on the worn brick of the chimney I see out my window.
The weathering of the blocks does not matter
Nor does aging peeling paint
Nor the bird perched atop the flue cap
A wing flaps now and now again
Fading light golden and warm
Fading light the glorious crown of a premature spring day
Fading light golden and precious
Light now fading is what matters in this narrow view
I hold of spring’s reality

TV and Aspergers Syndrome, Some Hope for Reality

To my one most loyal reader, the ABU got straight 1s at Festival. The only glitch was during sight reading when 50% of the ABU and several of the second violins just couldn’t figure out the time signature. Primus swears it wasn’t him that befouled the ABU’s stellar reputation.

More will be posted on the whole experience soon. I have to say that showing up on a Friday as a man normally beholden to a 8-5 job to do volunteer work at Festival really pissed off the Muffy crowd. Oh you know who I mean. These women are the epitome of attitude. I could hear them thinking as they stared me down, ‘I am still imbued with the values of the 1960s and I have a husband who makes enough for me to stay home and raise my kids right as opposed to the negligent job you and your working wife are doing loser. Oh by the way my husband also makes enough to pay for the augmentation to keep these puppies perky enough to wear these overly tight sweaters I opt to wear no matter what the season.’ But like I said, more on the social dynamics of volunteering at the land of social economic stratification will come at a later time.

But on to my real topic today, sometimes you see a bit of television that just nails your personal experience perfectly. This past Saturday I watched an episode of Parenthood and it was dead on, really dead on. My beloved spouse who watched the episode with me repeated the comments that she usually saves for Arlo and Janis comic strips, “Hey they have a microphone in our bedroom” and “where is our royalty check?”

How dead on was it you ask? Well there was the possum thing. The one guy who seems to be the center of this television series Adam Braverman (Peter Krause) is lying in bed at night when he hears a sound outside. The sound is slight but obviously animal. The hero he wants to be makes Adam jump out of bed and grab a tennis racket. He then goes outside to face the wilderness threat. I have not tried the tennis racket as a tool of animal control yet but I have observed others do this.

In my family’s case our wilderness noise was the killer squirrel that rampaged back and forth in our attic. Demon squirrel as I came to call it somehow got into the attic via a rotted soffit. The red eyed black furred beast while in the attic got into a box of toys and chewed up my security pillow that my aunt had made me as an infant. The pillow was a blue dog with my name in script on it. I miss my lovey puppy dog. Damn demon squirrel.

Anyway the squirrel by this act of malicious destruction of a forty plus year old pillow so pissed me off so much that it required a trip to ACE to get a squirrel trap. Nota Bene, I looked at other options. However, most animal specialists in the Mid-Michigan area don’t kill squirrels or opossums or other varmints. What they do is live trap the critter and transport. For this they bill by the hour. This paradigm is sort of the INS approach to illegal aliens applied to squirrels, I mean you know the little buggers will just keep coming back. The trap made economic sense because the animal specialists’ hourly rate ain’t cheap.

Facing the choice between sanity and economic ruin it was as I said it was a trip to the hardware store for a consultation with the old guy who seemed to be dean of the place. Most hardware stores have old guys that offer impliedly sage advice. Usually there are hard of hearing, missing a digit or two and wear an eye patch from where that tire they overinflated blew. My guru old guy recommended the Squirrelinator 3000 trap. His next suggestion was to use peanut butter as bait.

Up until Rocket J. Squirrel gave in to his legume lust we had to listen to him scurry up and down the attic from one end to the other. You would have thought the beast was playing ten pins and had to manually re-rack after each frame.
Dad Adam in Parenthood was facing the same thing and his nerves were frayed. I got it; I mean I really felt his pain. The hissing opossum which he inadvertently trapped scarred the pee right out of him much like the very po’d captured squirrel rocking the Squirrelinator 3000 back and forth in my attic did me.

But the similarities did not end there. This Dad character has a son who is “different”. The son has fascination with narrow topic areas. He insists on eating only certain favorite foods and is very rule driven. Finally the son insists on wearing a pirate costume to school. Hmmmh. I have seen most of this stuff (save the pirate costume) before. Then the A word is then mentioned.

Like every impacted parent who sees a reference to Asperger’s coming I cringed. I don’t know if it was the CSI episode where the kid with Aspergers was taken advantage of and made part of a murderous plot that made me sensitive to this or if maybe it was the never stated but very evidently Asperger’s guy who was the rule driven methodical killer on Criminal Minds.

Or maybe it was Sheldon on the Big Bang. Sheldon is a tough one though. He is so ASD that he can be used as a teaching tool for our son. Often I find myself standing there at the end of a Big Bang episode saying, “What could Sheldon have done that would have brought about a better response/result?” This is a regular game we play here. I note that it very hard to keep a straight face when Primus is laughing his ass off at Sheldon because I am thinking something like, son you are Sheldon.

Anyway back to the show at hand Parenthood. The parents hear from someone that these quirky behaviors of there child seem like symptoms of Aspergers. They scratch their heads and try and think of someone they know with a kid with that diagnosis. They shudder when they realize who the other family is. They are worried because the parents of the child seem a bit off themselves.

Next the father begins researching for “Aspergers cure” on Google. Next while still online he hits a faith based site for dealing with Asperger’s. Next he is firing between sites looking overwhelmed and thoroughly confused. I have so been there, so done that. Do I need mention that I am still overwhelmed and confused?

The Bravermans again trying to be the good parents, then tries to get their son in to see a specialist. However the specialist is booked out for 18 months. Via a weird and obviously TV reality only turn they get their son in to see the Bob Dylan of Asperger’s specialists. Hell just to find someone in Mid-Michgian that works with Asperger’s was a Herculean task.

My wife and I had to deal with the vagaries of insurance and filled panels. Blue Care Network of Mid-Michigan had text in their benefit description indicating we had to get a primary care doctor’s authorization to see a specialist. We did that and then we called the insurer. As soon as we got through the endless prompts on the 1-800 number we were informed no that wasn’t how it worked. Instead we were told by this particular clerical we had to get the insurer’s okay on who to see. Oh and by the way she stated in a casual aside there were only five doctors/psychologists in our area (read a 100 mile radius) that are potentially qualified.

Mom dutifully called each of them. Two said they no longer participated with the plan, one dealt only with children with criminal involvement, one was a gerontology focused practice and another had a full panel. Health care even with good insurance is just a bowl of jollies now isn’t it?

It was only when we were breaking down while in contact with one of the “no longer participating” that we found they had one person in the practice who still worked with the insurer and focused on ASD kids. We set up the appointment and much like the parents sat with baited breath at the end of the session. When the diagnosis came our conversation played out almost exactly as it did in the television series. I sat there hoping ASD was a phase and saying something stupid like we’ll get through this, like ASD is something that is anything other that a permanent set of characteristics. Afterwards as God is my witness I told my wife it was my fault and my families fault, just as Adam Braverman does in the series.

The feeling in the episode seemed true to reality. It seems as if the writer who is crafting this plot line has been there/done that. In a later episode there is an incident at school which results in the couple’s child being thrown out of school. In my experience you aren’t really the parent of an ASD kid until you have this or a very similar moment.

The call from the school usually begins with a euphemistically termed phrase like, “there has been an incident”. In the series the incident was the destruction of a fish tank. As the parents noted standing among the shards of glass and the dispersed pretty stones that had lined the bottom of the tank there were no survivors. Yeah I have stood among that rubble a number of times.

In my life the most recent incident occurred when I was going to school to do my parental volunteerism duty i.e, I was going to watch coats for the band festival as noted above. It was there when I was just entering the school that I found myself meeting my son and the social worker in the hallway kibitzing in soft tones with heads down. Hey I knew what this was I have been there many, many times in the past. Before I could get to my assigned task I was pulled aside by the social worker and told “there was an incident”.

The most recent incident for us was that Primus was being taunted by kids in his math class over a pencil having gone missing on a substitute teacher’s desk. Instead of hurting the child (and at six foot 170 pounds at 14 years of age this was theoretically possible) Primus stood up and to quote the social worker called the harasser a child rapist in a very loud voice and walked out of the room because he could not take the harassment any more.

Really what child at 14 unless they are fairly intelligent would go for the heinous “child rapist” term over something straightforward like numb nuts or useless fucker? After stomping out of the room Primus went down to the vice principal’s office. No sanctions followed but the vice principal’s office has now been designated as my son’s cooling down place on an as needed basis. Getting that space so designated is actually a victory because the school resisted a suggestion that it was needed at last year’s IEP plan meeting. (Each year we plan an educational and support track for my son, it is called an Individualized Education Plan).

Yeah, so far the writers of Parenthood are getting this issue right. I hope it continues. ASD is a growing disorder. What the cause is I don’t know. I know the statistics are upward trending for diagnoses of the disorder. I also know scientists have really been arguing the postulated vaccine correlation does not hold true. One thread of inquiry that seems logical to me and which intrigues me is the thought that common chemicals now widely dispersed in our environment, everything from cleaning products to the staples of manufacturing (stuff that is in everything from couches to sippy cups) may impact pregnant women in the early weeks of fetal development. It is not for this series to be a documentary on ASD impacted life or a white paper on causation or treatment. Still it would be nice if the story line keeps the issue of the how a family impacted with Asperger’s copes real.

Here is the link to the initial episode of Parenthood regarding Asperger’s http://www.hulu.com/watch/133234/parenthood-man-versus-possum

Tuesday, March 16, 2010

Boring Monday


Tuesday, March 16, 2010

Last night I spent the evening being a couch potato mostly. In reality I lay on the living room floor with a pillow and watched a trashy spy comedy and followed it up with a police procedural.

Oh I did get off the flow. For about 45 minutes I worked on a blog post about a TV show I had seen over the weekend. It required more time and I felt too tired so it is still in draft. After I stopped writing I did a little poking around on the internet looking at various sites to see what might catch my interest. About the most intriguing thing I saw was a truck that an animator had crafted a flashing series of illustrations around that looked like neon lights. Such a little thing, but it made me giggle.

The evening was not a total waste. Francie and I went to the nearest coffee shop to use the free latte coupon that everyone, and I mean everyone, in the community was taking advantage of. The nearest store in the chain refused to honor it. However the second nearest did accept it. A butter latte was had and it was good.

Also accomplished was a trip to the local service station. Secundus and I filled our bike tires with air. We then on bikes with inflated tires went to the library to pick up some music to transfer onto the laptop. I rather enjoyed the Vampire Weekend: Contra disk we found. It is a little hard to explain why the music caught my ear but mostly it is because of the CD’s infectious up beat pop.

Today’s meditation is:

Divine grace is working; therefore I am on my way to being healed.

It is comforting, whether true or not, to think that grace an elegant gift of love is working to make us whole. Really I kind of throw in with Norman Vincent Peale, if you believe in the positive and act in a positive manner there is a better than average chance that things will improve. Grace doesn’t necessary have to flow from without, it can flow from within.

Saturday, March 6, 2010

More on the Weekend. The ABU is up next

Saturday, March 06, 2010

A note on what is upcoming next with the orchestra experience. The local high school freshman orchestra has a variety of talented and gifted players. Violins, cellos and all sorts of other little instruments will play their hearts out. But the driving beat, the force for our chamber orchestra is the ABU (the Aspergers Bass Unit).

Both of the bass players in the chamber orchestra have ASD (Autism Spectrum Disorder) that meets the current criteria for Aspergers. Both of the bass players are big and blond. Really when they take the stage they look like two Nordic brothers with wild hair on bass. Sometimes I think they give this group better grades than they deserve because the bass players look like that might wreak havoc if they were unhappy with the judges scoring. More often think how much of a challenge it must be for the orchestra director to handle two guys that are 6 foot plus tall, 170 pounds plus who are quiet and somewhat intransigent (euphemism) as he is working up an arrangement. Still for whatever reason the ABU works.

The performance is in about an hour. I will post afterward how things have gone. It is important as least for me personally to remember a diagnosis of ASD is not something that stops the world. Primus plays hockey, is in an orchestra and has a devilish sense of humor. It is just navigating the shoals of interpersonal relationships such as misinterpretation and intolerance that make ASD the challenge it is.

Just Checking In

Saturday, March 06, 2010

The weekend is already swirling about with all sorts of activity.

Last night we met some of our friends downtown. Very quickly they jettisoned my wife and me for an invite only event. Fedoras in place they were off to a meeting of the purportedly 600 coolest people in Lansing, MI. Hmmmh could there even be 600 cool people in Lansing, MI.? Me I have never been cool. Might have seen that elusive state from a distance once, but there is no point in chasing the smoke of a vanishing train at this point in my life.

Well anyway when our friends bolted we found ourselves sitting at the bar next to a young man who does risk assessment. He remember us but not we him. He was our new next door neighbor. Pat was his name and he has moved into the house right across the street from us. We have spoken a couple of times but nothing significant. As we talked last evening we did the ritual dance of asking where do you work, what do you do when you are not working and any surprises about the new home? It was at this point the conversation became attention-grabbing.

In response to the last question our neighbor pulled out his cell phone and said something like, “Interesting you should ask that.” He then indicated he was doing interior remodeling stuff. He continued stating he had pulled some paneling down to replace it with dry wall when he found this. Could we have a drum roll please? The image on the phone was of an actual human skull. Per Pat he pulled a panel off and found an old brown paper bag tucked into a crevice. When he pulled the A&P sack open out he recoiled. (This is my term because expressions about explosive bodily expulsions just cheapen the blog experience.)

Pat explained that once he stopped hyperventilating he had called the ELPD over to look at it. According to Pat the police believe it may be from a medical school based on the precision with which the skull was “prepared.” I am not sure prepared it the right world, but the cranium was absent of any brain matter or its residue so unless he prior owners had very odd ingredients for stone soup...well you get my drift. The police had talked to the guy next to Pat who has lived in his house about 35 years. He gave them a list of every person who had been there in the past 3 ½ decades. (This should stand as another cautionary point-you neighbors are watching you.)

Thanking Pat for the tales of dismembered heads we heading out for the night. For the record I had two beers. One was a high alcohol Imperial Russian Stout so in reality I had about 2 2/3rds beers. I was living large and on the edge for me. Okay this means I cannot drink again until April 15th or so. Remember the gmanitou rule, 2 beers per months whether I need them or not.

This morning I got up and went with Secundus to the Mid-Michigan Band and Orchestra Festival. This is a big deal for band weenies and orch-a-dorks. They are all striving to get ones in the performance categories. Right off the bat things took a sideways turn. Secundus as is his habit spilled orange juice on his freshly laundered shirt where we had stopped to grab a breakfast bagel. Into the washroom we dashed seeking running water. At a distance it was okay. It is back to the laundry for that frilly poufy orchestra shirt.

With moist shirt Secundus cranked out his performance before the judges. His horn sounded solid. His work at sight reading also sounded pretty good. We will get the scores when we go back this afternoon. You see Primus has his performance with the chamber orchestra at about 2:40.

Wednesday, March 3, 2010

Allow divine love to remake me.

Taking a footstep is automatic. We do not think of how one of our feet will fall in front of the other. Our gait is virtually automatic adjusting to weather and pavement conditions. In so many aspects of our lives we try to live the entire day like this, one step following another without thought. Times are such we should indeed think before we act.

Every choice we take whether conscious or not has a consequence. Opting to really listen as opposed to using a mental flow chart to evaluate a conversation can make the world a different place for someone, maybe a better place. A little bit of thought can turn the drone into sense. A little bit of focus can make a real difference. Slow down and listen, what is the hurry? There is only one today.