Autism

Thanks Dora--right you are as usual. I take a bit of hope in knowing that many of these stories stem from a vaccuum 20 years ago in everybody's understanding of the spectrum. I have a friend in the UK who's daughter, now in her twenties, wasn't diagnosed until her teens. Still, you get the second-guessers, "experts" and non (Tom doesn't have a single obsession that all AS kids are "supposed" to have, so does he really have AS? And why do I "want" him to have "autism"? And is AS 'really' autism at all? etc. etc. etc.

Diagnosed in 7th grade by 3 experts.

Throughout his entire school career our son's IEPs were always done by the SELPA for two counties. That meant they had power with 30+ lawyers and staff available to them. Their office was located in our city. They were tough people to deal with. Experiencing tough school people teaches you how to advocate for your child. Checking up on their information teaches you what is important to know and how to respond effectively.

Your state's Department of Education- Special Education is a great resource. They can't help you in mediation or due process since this is a conflict of interest. Call before mediation/due process to get answers. Also have your entire case ready before filing mediation/due process papers. You have a deadline to meet and in some cases evidence requirements within 2 weeks of filing the paperwork. Have everything ready to go before filing the paperwork.  Also helpful are law schools that teach special education law. Keep calling back until you get a helpful person.

 At the first mediation meeting with the school district I hired the future director(a behaviorist) of Families First to attend. She was so persuasive that the mediator required the school district to pay for observation, positive behavior intervention plan and staff to monitor the plan in my son's special day class. I didn't even have to pay a penny for Families First. So don't be afraid to hire people(who services you need) to come to a mediation with the school district.

It was during our mediation with the school district that the mediator ordered an independent evalution by an autism doctor who had worked for Alta Regional for over 15 years. It is the school district that decides on the doctor since they are required to pay for the testing.  I requested the school district give me resumes of approved doctors. I knew ahead of time which doctor I wanted based on recommendations from parents over the years. The school district ordered a few meaningless tests for the mediation. It is always important to ask ahead of time what type/name of testing will be done. When the doctor's office called I asked what tests would be used. Bring a summary of your child (doctors prefer that for complex cases) and any records to show the doctor if requested.

 I convinced the doctor at the visit based on the summary notes/test results I gave him that it was time that a 7th grader be  finally diagnosed. It is important to talk to the she/he doctor and tell them what you want before the doctor begins with your child.  The doctor was moved by that comment. The doctor said he could get in trouble for this but did do extensive autism testing. I reviewed the recommendations with the doctor and got him to change/add a few more. This doctor was helpful because he had experience working with both autistic children/adults and made us aware of my son's future needs. Timing was excellent. 

The doctor decided that I could get a copy of the results ahead of time and that he would fax the school's testing/reports to arrive at the moment of the 8am mediation meeting. While the school read the reports they paid for I already knew what the reports said. It was a pretty detailed 10 page report. The doctor reviewed the reports with me and answered all my questions. Our son's mental health services were helpful to pay for testing and get services such as individualization (helping children become individuals by learning to separate from their parents and becoming independent).

The mediator also ordered the Neurodiagnositic Center  to do diagnositic testing. Again I reviewed with them their findings and got them to change/add their recommendations. Since this report was recent (7th grade) the information was useful at the High School Freshman IEP meeting with 20+ people attending who tried really hard to say no services were needed. Since few students get evaluated by the Neurodiagnostic Center in the state of California (only 2 centers in the state) suddently everyone agreed my son needed help. The IEP meeting that lasted for days finished quickly after discussing this report. The remainder of high school IEPs years were simple.

Finally after filing a complaint with my insurance company for failure to do diagnostic testing we were sent out to some expensive doctor in San Francisco whose purpose was to waste our time. The insurance company can get in trouble if diagnostic work is needed. You contact membership if you have concerns. There is a timeline and appeal process.  The psychiatrist was on the side of the insurance company and really didn't do any testing but tried hard to convince us that we didn't really need any help. He spent most of his time talking to me during our 40 minute meeting. It cost us high parking fees and 4 hour round trip drive. 

We were fortunate that our new insurance was with Kaiser. We met the doctor who started FEAT (Families for Autistic Treatment) and she diagnosed my  son with autism. She referred us to a new Kaiser doctor who just finished working for years with the Yale Child Study Team in Connecticut. He did a month's battery of tests, wrote letters to the school and adjusted my son's medication. He was helpful in guiding us on how to deal with Childhood Disintegration Disorder and our son. He was an effective advocate for us against the SELPA.

So I would say that these people are some of the heroes we have encountered in our journey. They changed our lives and gave us hope.

I have a terrible time with article as these, especially where I 'myself" am physically handicapped; meaning BLINDNESS, but also with numoerous medical tragedies which became worsened by the years spent in captivity and torture with uninterrupted starvation that lapsed into famine. However, this is very true about the pojnts you bring to light.
It is with marked credibility as a Professor, but one more of religion rather than anything else, that I say learning disabilities mostly are diagnosed correctly, but in cases as these listed here, this is highly correct. Although I was diagnosed long, long ago as being not only blind but catastrophically ill form a medical stondpoint, there were some aspects of misdiagnosis. This in itself was the causation fro a great sense of emotional upheval, but comprised with a mixture of malevolent mistrust, especially fmr the medical side of the former.
Sometimes, and I speak on a personal note, people make a PURPOSEFUL misdiagnosis, because they contain a form of prejudice that is highly rare, but moreover, it not only insists upon these people as indidivuals, but in addition, they "enjoy" causing harm that is often beyond the margains of being cruel. My book "ETERNAL I.V. POLE' published in 2003 by authorhouse and can be found all over the web, tells all about an horriffic and farcical event that was beyond apocalyptic, which edified MISDIAGNOSIS in such a way, it caused an entire medical hospital to go down by the "Mass Board of Medicine and Registration" in 1996, and actually altered every aspect of my life, both seen and unseen, forever as I was literaly terrorized and taken away with gun bearing guards and made to die-to starve to death at 57 pounds, and illegally p[roflied as a mental pt who had 7 types of psychological illness, which of course, was not true, but this made HORROR HISTORY; all because I AM HANDICAPPED!

Her Holiness;
The Most Venerable Lama Rimpoche, prof. Ph.D O.F.M.
Miss Milkweed L. Augustine
author, pacifist leader, religious leader

@Kristina Chew from the blog, "The Story of Noah Greenfield".
"Honesty hurts but better to say it, if it helps you to face what lies ahead, and do the right thing. I think.

@Lama Rimpoche, prof Ph.d O.F.M. (beloved teacher in Tibet)
This quote from Kristina was my reaction to your comment on this blog. I can't imagine what it is like to go through your experience. I liked this excerpt from your book, "Eternal i.v. Pole", that hope is not for everyone who has a fatal illness. It would be interesting to learn of the life lessons from your heart texts. Do people need hope to survive a difficult situation? How do you live with the knowledge of the unacceptable? What joys in life help you cope with this experience? Experiencing nature (icicles on the roof and the blackness of night) was calming to my senses when taking care of my dying dad. Your life has meaning in the books your write.

This post reminds me of my own history in particular.  When I was in elementary school probably just within a few years of AS being added to the DSM-IV, I was diagnosed by the school psychologist as having a langauge based learning disability and an empathy problem.  Nobody ever mentioned the possibility of AS, and it wasn't until I was in college that I was properly diagnosed.  Funny how experts sometimes aren't.

@ Justin. I question the DSN-IV definition of autism- when it comes to empathy. I find empathy from others on this blog. I think autistics just have a different kind of empathy.

@Lama Milkweed L. Augustine Prof.PHd. I think you have a different perspective on life that I find interesting and refreshing. You have insights into suffering and dying that other people need to hear. You have face "hell on earth" and your worse inner demons while dealing with adversity. I will check out your writings. Thanks

@Justin;
Thank you for your commentary. It is so refreshing and equally rewarding to hear good things, especially about "me." I hope you sign my petition to help our nation's governmental leaders to possibly assist me in geting my rightful care as someone who only has 3-4 months left remaining.
In retrospect to what you said, yes, I do contain a higher self consciousness, but moreso, I also contain a deeper realm of introspection due to me being a monk, but one who was blessed with a glorious sense of knowing the invisible God-the true God-our Lord and Savior. (Amen!) All I know from a physical point, other than fighting for others' rights and my own, is torture and barbaric cruelties, which were exactly likened to Nazi Germany. People who have met me or interviewed me over these paast several years on the radio, or in newspapers, were moved to tears, because I strongly believe in soul searching with loving compassionate empathy, but allowence to feel the painful remnents from a victim's point of view, i.e. the sufferer, or this torture survivor. I have worked well over half of my life with those condemned to die by ex ecutions in person and in ther enviornment, as well as closely with political icons in the distant past as a young girl, although a person strictly of faith alone. I am known as lover of the condemned, or voice for the condemned.
Check out my book too, THE ELECTRIC CHAIR; JOURNALS OF H.H. THE MOST VEN. LAMA RIMPOCHE, MILKWEED L. AUGUSTINE PH.D
Thank you again, mysweet.
Blessings to you, and to all on this pg.
Her Holiness;
The Most Ven. Lama Rimpoche, Prof. Ph.D, O.F.M.
Miss Milkweed L. Augustine
author, pacifist leader, religious leader
voice for the condmened

"The measure of a society is found in how they treat their weakest and most helpless citizens. As Americans, we are blessed with circumstances that protect our human rights and our religious freedom, but for many people around the world, deprivation and persecution have become a way of life".
Jimmy CarterUS diplomat & Democratic politician (1924 - )

@The Most Ven. Lama Rimpoche, Prof. Ph.D, O.F.M.
Miss Milkweed L. Augustine.

@I have worked well over half of my life with those condemned to die by ex ecutions in person and in ther enviornment, as well as closely with political icons in the distant past as a young girl, although a person strictly of faith alone. I am known as lover of the condemned, or voice for the condemned"  We are fortunate to have your books available which are a record of your memories and experiences on the value of life and dealing with misfortunate circumstances. Your legacy lives on about "treating the weakest and most helpless of citizens". I plan to check out some of your books.

@"were moved to tears, because I strongly believe in soul searching with loving compassionate empathy, but allowence to feel the painful remnents from a victim's point of view, i.e. the sufferer, or this torture survivor"

I am interested in signing your petition so you can get ("blessed with circumstances") assistance from government leaders. Where do I find this petition?

"Searching for loving compassionate empathy".
I just finished watching 'The Diary of Anne Frank' movie. It was helpful in terms of learning how to seek out the good in life in the face of hardship. Growing up taking care of two generations of family members since age 8 I needed to search for 'loving compassionate empathy' to make sense of the world without compromising who I am as a person. In the movie Anne was searching too.

This weekend my last child got their own place. It took a lot of work/time/money to make that happen. Living on his own in the world will give him a chance to be who he was meant to be (to reach his potential as a person).  It is the first time in my life to have freedom from taking care of someone. I don't know how long it will last. I get a chance to feel like myself before I am too old. I won't spoil my freedom by worrying about the future. I am going to enjoy this present day joyful moment. My elderly mom is taking care of my brother. His needs are beyond her abilities to care for him. Anytime now things can change just like the Holocaust. I learned from the movie that we make choices about our lives. I choose to twist my heart keeping the bad outside and the good inside just like Anne, a teenager, (who didn't get to live life fully) decided to do with her young life. Otherwise I could easily create problems for myself too.

"[F]inally I twist my heart round again, so that the bad is on the outside and the good is on the inside, and keep on trying to find a way of becoming what I would so like to be, and what I could be, if... there weren't any other people living in the world. Tuesday,1 August, 1944, pg.241

I realize watching the movie that we make choices about how to interprete events in our lives. Here is a quote from Anne Franks' diary: http://www.bookrags.com/notes/daf/QUO.htm 

Quote 22: "It's really a wonder that I haven't dropped all my ideals, because they seem so absurd and impossible to carry out. Yet I keep them, because in spite of everything I still believe that people are really good at heart. I simply can't build up my hopes on a foundation consisting of confusion, misery, and death. I see the world gradually being turned into a wilderness, I hear the ever approaching thunder, which will destroy us too, I can feel the sufferings of millions and yet if I look up into the heavens, I think that it will all come right, that this cruelty too will end, and that peace and tranquility will return again." Saturday, 15 July, 1944, pg. 237

This is my way to confront reality by keeping in the good, positive parts of taking care of others and appreciating how these others add to the quality of everyone's life. Every person has value and their existence adds positive meaning to our lives.

The ability of children of the Holocaust to confront harsh realities and transcend their physical boundaries through creative expression is the focus of a new exhibition opening Thursday, March 12, 2009 at the Anne Frank Center. www.annefrank.com/

I have discovered on my life's journey how to transcend the circumstances in life. How to embrace the hard things of life. I will always try to reach out to happiness so that I do not lose myself to the pain.

  :http://alifeofinspiration.blogspot.com/2008/07/how-to-transcend-suffering.html 
"When bad things happen, you still exist. You can never lose yourself, despite your surroundings. Live for this moment, accept the pain of this moment, and accept the joy of another. Do not spend hours in worry, or resentment, for these feelings only lend themselves to more. Reach your hand out to happiness, and happiness will reach its hand unto you".

Dear @justin: That was absolutely beautiful!
I am really touched to know that you too are someone who is enlightened. You are surely someone who is very aware of things, especially I can see you contain no sense of ego; this is good!
My petition link is here on change.org follow it...URL http;//humanitarianrelief.change.org/actions/view/help_dying_patient-to_receive_her_rightful_care_help-lama-milkweed-l_augustine

Thank you, Hun!
God bless you!

Her Holines;
The Most Ven. Lama Rimpoche, Prof. Ph.D, O.F.M.
Miss Milkweed L. Augustine
author, pacifist leader, religious leader
VOICE FOR THE CONDMNED

Dear justin@-I received your private message and I accept. I am very sorry too, as I will never agree to this horriffic information, and I appreciate it, because although I already knew the motive behind it, things still hurt. I can only imagine what you must have endured with your father, and that is very sad.
I used to have intellectual battles with fellow esteemed Buddhists scholars like myself in Congressional-type meetings about such ethos-ethics-and when I personally talk about what it was like for me, all listen and usually never reply out of a guilt ridden respect. In any event, I personalaly do know that when one is dehydrated and starved, you hurt and the parasympothetic nervous system actually "pulls" and withdraws, like comming off of morphine, etc. Pressure is exerted on the CNS, or central nervous system,  and the brain often encounters psychological changes, and terrible wrechning headaches occure. My teeth literally FELL out, and I encountered madness form a nutritional disease called PELLAGARA, and I withstood wet and dry BERR-BERI, thymaine deficiiency, with a terribly distended belly, and ulcers on my eyes and brain. I encountered congestive heart failure from this vital B vite not being in my body at all, and every fat molecule was gone, and like now, and though all of my life, I have encountered TOTAL PROTEIN CALORIES DEFICIENT MALNUTRITION, which is the most deadly form of malnutrition there is. Looka t pictures of CONCENTRATION CAMPS, and look at pictures of mass starvation, and you will see ME. I published a lot of picutres of me like this, and in the same perdicament. Do you still agree? The body does pump out norepinepherine, obodily morphine, when only hours from death, as known fomr personal experiences, as well as form the mortuary field, but when one is in torturous pain like mine, NO; This does not owrk. I still had to have injected into my iv port morphine and other medications.

In humble closing, I am sorry about this. Everything you said in the discussion was fine, and is very helpful, and more than known, others will find it helpful as well.
It is only due to the indication about starving someone to death, I wondered if you supported Hitler. I guess I was wrong.
About that book...Yeah. My father, my Nazi. Get the meaning.

Love Milkweed

Hi, and many thanks for your kindly message. It is not because no one wants to help; it's simply because they contain hate, and this has all been documented. Moreover, the only reasons as to why this happened pertaining to my IV, is because of my NEUTROPENIA, which everyone else thinks is ceazy. I am an EMBALMER, and I had studied internal medicine for many years as a medical monk, but people are afrais because they don't wish to hurt, "DO NO HARM." However, in the interum, they ARE, by not caring for my most basic needs, i.e. blood draws, which ned to be done every week. I may end up getting another port a cath anyway, my pcp called me last evening while doing my work as I was talking with a prison and trying to save another condemned friend form being sent to the electric chair in a few days.
Please understand that you are a very kind individual and it was a pleasure in blogging with you. But your are equally correct in this asumption about people like me, albinos are diferent in every manner of the physiology, as I have the most rare form of hypigmentation or albinism. Meaning, there are three types in the humen species, and mine is the rarest of the rare; THERE ARE LESS THAN 20 OF US WORLDWIDE.

I am the 20th recorded individual, as this causes  a very substantial flaw with EVERY ORGAN IN THE BODY.

Many thanks, and it was truly kind of you to respond.
God bless you adn many sincere blessings.
Lama Milkweed
author

@Lama Milkweed L. Augustine Prof. PhD o

I admire the work you do with the condemned. A society is judge by how they treat the least person. The United States has too many people in prison. Surely mistakes can be made. There was a college student with much promise who died in prison before DNA could prove his innocence. He died from not receiving proper treatment for his lung problems. Imagine struggling to breathe in prison til you died.

Thanks for telling me a little about being an embalmer. It is interesting that you studied medicine for many years. I still like to tell people where I am coming from to make sure we are in agreement when we talk. I would hate to 'conflict' with someone when later I found out we were in agreement. the disagreement might just be a matter of using the wrong terminology or word. I find I do better this way and there is less misunderstandings and hurt feelings. Why cause pain when all we are doing is trying to reach out to each other?

You are so right about "DO NO HARM." I think it is important that you are involved in decision making. Otherwise it harms by inflicting pain on another because the healthcare professional isn't taking your needs/situation into consideration. I learned more about albinism from your comments. It must be difficult to have the most rarest form that causes "a very substantial flaw with EVERY ORGAN IN THE BODY". Having worked with children with rare disorders I bet it feels like you are on your own? That is what the parents of these children told me.
 
I am so happy to hear you may end up getting another port a cath anyway, my pcp called me last evening while doing my work. Maybe there is hope for this pcp. I sure hope you get another port so you can focus on the important things in your life and feel better about your healthcare.

Thanks for the blessings. May you be blessed too in all that you do. I enjoyed our conversation.

Hi,@, and tanks.
I know what this is like, I have a terminal lung disease, but I rarely tell people over the internet. I ave end stg. COPD with EMPHYSEMA and am on 8lpm of continuous oxygen since I was 32 and never smoked in my life; or anything else for that matter. Anyway, thank you personally for your message. Again it was very nice to know you and interaxt for a while. I cannot respond anymore to this page. Many sincere thanks for replying. Yes, of course, it is ALWAYS with love; no matter what.
Best!
Lama Milkweed L. Augustine Ph.D
author, pacifist leader, religious leader
VOICE FOR THE CONDEMNED

Lama Milkweed L. Augustine Ph.D
author, pacifist leader, religious leader
VOICE FOR THE CONDEMNED
Thanks for sharing. Please take care of yourself. It's not necessary to respond anymore.

It was wonderful to meet you this way and you will always be very memorable to me. Take care.

You too, sweetheart!
It was wonderful knowing you, and I hope all is good. I may get another port a cath after all. But we agreed only for my i.v. Dilaudid, because he received mroe paperwork yesterday, he is a new pcp as said, outlining my terminal condition. No mreo TPN as he already knew, but he wants to make me as comfortable as possoble. PRAISE GOD!
Alkso, praise God for letting me meet YOU.
Good-bye, sweetheart!
Lma Milkweed