Monday, September 7, 2009

What, again!?

Well, it's happened again. Actually it happens every September 7. As Sheriff John (for those who grew up in Southern California and are old enough to remember the children's television show on there locally back in the stone age) would say, I'm another year old today. Yes, it's my birthday (for anyone who gives a shit), I am 54 years old now. I am not a terribly young man, but I think I look young for my age. For anyone interested in what I look like there is a photo of myself on my jonathan's stories website. It is somewhat dated, I was 47 when it was taken, but I don't think I have aged too much since then, though I have gained some weight.

Somehow each year you become older you reflect back on your life and sort of feel at this advanced age all bets are off in terms of having a better life or being able to accomplish something in the world or making the world a better place or bettering yourself in some ways.

As a child, I went to special education schools from age 6 to age 14 with the exception of one half a semester of a regular education private school that I was expelled from at age 12. It hurt being told I was "not ready" to attend a regular school with non-disabled kids. For those who blog about autism on the internet, both parents and persons who are on the spectrum themselves, I am fairly certain that the vast majority never attended a special education school in their life. Unless they have and know what it is like to be told you can't cut it in regular education because of your behavior, rather than the lack of reading ability or academic skills, they can't possibly know what the life experience of the majority of autistic spectrumites is like.

My first memory goes back to age 4, about 49 years ago when I attended this summer school where my mom hoped to enroll me in kindergarten (as the local public school's kindergarten was out of the question) and being told I was "not ready" to attend this school for kindergarten. Mom found a kindergarten that would take me but the principal threw his back out doing some hard labor of some sort and could not look after me and it was felt my behaviors were too challenging for anyone else to take care of me, so I was expelled from kindergarten and still remember the hurt. At age 6 I started special ed school, when the new school year began.

In spite of being in special ed I always had hope. I never dreamed my life would end up like this, being fired from multiple jobs, having to give up the ghost and applying for disability. I thought I would get a good college education, be a lawyer, journalist, or some other type of professional and have a nice house with a picket fence and beautiful wife and maybe kids just like "normal" people. All of the old dreams that are such terrible cliches.

I finally left special education for good and enrolled in the local public school and was put back a grade (8th grade at age 14) and did okay (not great) academically. Upon reaching a later stage of adolescence I went to pot, both literally and figuratively, and I don't know whether or not marijuana abuse, or adolescence angst making autism worse or both affected me. However, my grades started to deteriorate and I barely graduated from regular public high school. I attended community college and then transferred to four year college which I managed to graduate from but not having done well enough to go to graduate school.

I then worked a variety of menial jobs, then learned the field of medical transcription, but was too mediocre at medical transcription to keep working in the field and retired from paid employment at age 51.

Contrary to what a number of my detractors in the ND movement or elsewhere seem to believe about me, I have always tried my best, tried to live the best life I possibly could.

It took me many years to realize the grim prognosis, how my condition was incurable and the unlikelihood of a cure being found in my lifetime. This was in spite of the fact that in college I wanted to go to graduate school and become a researcher who could find a cure for my brain-damage. I thought that dream would be fulfilled but alas it was another pipe dream.

I recently read the John Steinbeck novella "of Mice and Men". The title comes from the lines of a poem by Robert Burns, "the best laid plans of mice and men aft gang aglay". The two protagonists in the novel (one of whom apparently has a developmental disability which might be similar to autism) dream of being able to stop being petty laborers for others but owning their own farm, but this was not to be. I am also reminded of the Jimi Hendrix song Castles made of sand with the line Castles made of sand melt into the sea eventually. Another metaphor similar to the one of mice and men.

This would seem to apply to the parents of autistic children, who believe that ABA, special education, GFCF diets, DAN protocols, chelation, etc. will turn their children into normal children or enable them to function much better and be able to make a living and have a wife (or husband), etc. Supposedly the playwright Bertolt Brecht once said, the man who laughs has not been told the terrible news.

It also applies to those who embrace a scam like neurodiversity claiming that autistics are just fine the way they are and with the right supports they can do just as well as anyone else and engage in the no myths propaganda film starring Ari Ne'eman and attempt to extol their own brand of mythology for those who might be willing to embrace the opiate of neurodiversity.

Of course, I can't help having some hope; sometimes emotions are stronger than logic. Perhaps my life will begin at 54, I will be able to live another 30 years or maybe even longer and accomplish some things while I am still alive. Sometimes it is hard to be realistic so I know how parents of these children feel.

Tomorrow is my hearing for SSDI. I have waited nearly two years for this hearing, having originally filed the appeal in December of '07. I was supposed to have the hearing on May 19, but my lawyer was not notified that a vocational expert would be testifying for the government and he did not have the adequate files to crossexamine her, so it had to be postponed. Hopefully I will have my day in court tomorrow. There is a good chance I will write a blog post about it either way. It would be good if I could prevail and get some money (minus what I will have to give to my attorney), but my chances are not good. I am pissed this had to be postponed, that i have to go through this and the hearing has to be on the day after my birthday, but so it goes. If I lose at this level, there may be appeals including the written appeal, having the case heard in federal district court and after that possibly appealing to the 9th circuit court of appeals. Some of these cases are even heard at the level of the supreme court but that is rare.

Ari Ne'eman and his fellow ASAN members pat themselves on the back for having lobbied for Obama's stimulus package that will make these SSDI cases move along faster. Just means that if this stimulus works, someone will have to spend five years fighting the government for their disability instead of ten years or more. Yet ASAN and ND just want people with developmental disabilities to rot and not be cured if a cure for them could be found. Being asked for an explanation Ne'eman was only able to reply with the stupefying copout "being anti-cure does not mean being anti-progress" but I guess this is all old news for people who read my blog and other autism-related blogs.

Well, just wanted to tell the blogosphere that it's my birthday today if anyone cares. My parents care thankfully, but they are in their 80s and won't live forever. I have a sister, but she lives about a thousand miles away from me and we are not terribly close and I only talk to her a few times a year, so not sure who will care it is my birthday when my parents die, but in any event, happy birthday to me.

14 comments:

Stephanie Lynn Keil said...

Happy birthday! I learned long ago to not really care about birthdays: my family doesn't think they are a big deal.

I've decided that college is a waste of money for me and will probably never graduate unless I come across a large sum of money.

I have "dreams" but I'm too young to know if they are merely pipe dreams or if they will actually happen. I think they are realistic but I don't know if they will happen; I hope so though!

I think my parents sent us (their children) to a private Catholic school to avoid the public special education mess.

But the public needs to know about all sides of autism, not merely the "genius" side that is so often promoted.

You're kind of like the "Joe Plumber" of autism; I think the majority of people with high-functioning ASDs are in the same boat as you.

Marius Filip said...

Your birthday falls on the same day as the National Day of Brasil, I guess.

Imagine a lively samba dancing when you feel joyful, imagine a slow and quiet samba tune when you are sad.

Happy birthday!

farmwifetwo said...

Happy Birthday Jonathon.

And may you get what you want, wish for and need in the upcoming year.

Best of luck tomorrow at court.

Roger Kulp said...

I am a few years younger than you are.I cannot believe how ridiculously slowly I age.For too many years I looked like a teenager,now I look like somebody in their early twenties,only barely.I think it's neuroendocrine, definitely related to my incomplete sexual development,possibly related to the meningitis I had as a baby that also triggered my autism.My DAN! is the first doctor I have ever had who thought it was important.

Perhaps finding a cause for all this and applying it all to autism, and perhaps aging research will be my little way of making the world a better place.

When I went to school,in the late 60s,and 70s,it was the era of what they now call segregated special education.That is,special education classrooms in regular schools.This itself is pretty much gone now,but it does still exist.I spent alternate years in special ed and regular ed.I think they kind of noticed something was wrong when I was in first grade,and started wandering around the school butt naked,and peeing on the floor.

Special education schools were probably on their way out by that time.I know there were some schools for the blind,and deaf that were still around in the 80s,but even then they are sort of a relic.

I spent at least half of my time in school seeing therapists and psychiatrists of one stripe or another,and it was in the early grades of elementary school that I got most of my diagnoses.It blows me away nowadays that there are children that can be diagnosed as young as two.

I was kicked out of several kindergartens myself,it just sort of comes with the territory.

Unless they have and know what it is like to be told you can't cut it in regular education because of your behavior, rather than the lack of reading ability or academic skills, they can't possibly know what the life experience of the majority of autistic spectrumites is like.

I was told this for both reasons.I think it's fairly common for those with real autism,and not Asperger's ,to have problems with both areas that would prevent you from fitting into a regular classroom.

In some way,you were very lucky to go to a special school,you have no idea how cruel "typical" children can be to a severely disabled child ,especially a child who is able to talk,but still has severe autism all the same.

Never got into drugs or booze. Something about having severe immune related heart,lung,and bowel problems kind of puts you off of doing that stuff.When you have to worry about that,and about these illnesses triggering further regression,you just kind of spend your life schlupping along from one day to the next.

I do understand that drugs are a big problem for a lot of teens and adults on the spectrum,though.

I think deep down most parents eventually realize that DAN!,ABA, and GFCF will not cure their children,but it will make their lives easier.As far as GFCF and DAN! are concerned,there are a lot of medical issues that can,but not always,go along with autism.Medical issues that can contribute to autism severity and regression.If you deny this,you are basically agreeing with both neurodiversity and the APA.

Doctors dismissing medical issues as "just something kids with autism have",and then not treating or investigating them is something that I know from personal experience,goes back at least as far as the 1960s,probably earlier. This is what I was told as a child. DAN! doctors are the first to realize medical issues cannot always be separated from autism, and treat it with the integrated approach that is often needed.That is why good DAN! doctors are unique and special.

Jake Crosby said...

Well, we do disagree on some things. Nonetheless, happy birthday Jonathan!

Autism Mom Rising said...

Happy Birthday Jonathan!

lurker said...

I wish you luck about your hearing tomorrow even though it won't be easy. I have an appointment tomorrow with a vocational rehabilitation counselor about a vocational program I'm trying to get into. I've waited for months to get to this point while dealing with a psychiatrist, paperwork, and delays. Happy birthday.

navywifeandmom said...

Happy birthda Jonathan!

navywifeandmom said...

I think deep down most parents eventually realize that DAN!,ABA, and GFCF will not cure their children,but it will make their lives easier.As far as GFCF and DAN! are concerned,there are a lot of medical issues that can,but not always,go along with autism.Medical issues that can contribute to autism severity and regression.If you deny this,you are basically agreeing with both neurodiversity and the APA.

ITA Roger. Well-stated. I know damn good and well Natalie will likely never recover but for God's sakes I am not going to let her medical problems go untreated because "science says it's not possible". She is far from recovered, but she is way better than she was a year ago. Multiple adults in our life have noticed a difference not just in her disposition, but her physical health. I hope for more milestones this year.

SM69 said...

Hi- I have not been here for a while, but I thought I could not miss this happy birthday celebration (Happy birthday!) and wishing you good luck in court today. I too think ASD people tends to look very young and I would even add there are a few common physical features which at times are pretty striking. It would be nice to do a study on this; symmetry of the face (which tend to be perceived as a feature of beauty), blue eyes very common, and often fair complexion. But of course, in my opinion, the feature that is the most prominent and common amongst individuals, as Roger says, is immune issues. That does not mean there are no ASD people without these issues, with dark hair etc of course, I hope I will not, one more time, be misinterpreted. Physical features are not the only aspect of course that indicate age, the other is a form of innocence, at times, of course some form of immaturity. Lots to think about, hope I have not offended anyone here.

John Elder Robison said...

Happy birthday, Jonathan. I'm sorry I did not see this yesterday. I am often depressed on my birthdays; I hope you felt better. I was 52 this summer so you're a bit ahead of me.

Anyway I hope for the best for you. I know you had your hearing, and I don't know what to say about that. I wish you could find some good work options, but I understand they are few.

I always hated dealing with the state. I found it humiliating and degrading the few times I did it.

NetBizSavvy said...

happy birthday..

wish the best of luck :D

Anonymous said...

Happy Birthday

regards
WD

Heather Babes said...

Jon,

I know it's been awhile since I've read your blog! Happy Birthday and yes, some of us out here DO care!

I see a lot of negativity in this post and that perhaps is related to current struggles and then another birthday (another year "wasting" hope). I hope you cheer up some :)