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Autism in Hawaii - mei - 01-28-2008
Is anyone out there that has a child with Autism/ Autism spectrum disorders having a dificult time with he department of education and feel that they are getting inadequate support and or treatment for their child? As a single mother of two, I have a fourteen year old who was diagnosed with aspergers/ conduct disorder/ADHD/ ......
He has something on every axis. I have engulfed my self in the world of autism in order to learn how to best nurture his strengths and help him become a functioning human being who may someday be able to live on his own and lead a relatively normal life. My struggle has been long and arduous and we still have a ways to go. Throughout the course of his life I attended seminars, attended the university focusing on learning and behavior/psychology.
I spent 7 years doing early intervention with other children on the spectrum as a skills trainer/paraprofessional. Then I became a consultant and case manager. That's a long story ... The bottom line is I was told by many "educators" that my child would never speak amongst other things.
With the use of the Picture exchange card system, serious repitition, positive behavioral interventions, some help from a friend whom has recently been banned from this forum, multiple hospitalizations, and altering the environment. I have overcome the presumptions that were initially made, and guess what!?!
unless you spend a great deal of time with my son you can't tell that he has multiple labels. He is talking, walking, able to follow directions, be interested in age appropriate activities, he appears "normal", yes he has issues, yes he thinks diferrently, his testing scores are well below the 1% on the national average. ButI never gave up on him, or any of the other children that I have worked with. And there are things that work.
It is long, hard, and never ending- but these 'different' people may invent something fabulous, become excellent artists, or many other posibilities. I HAVE hope, I have senn sucess, I a facilitated growth. And these are things that I will carry with me for the rest of my life.
RE: Autism in Hawaii - Beachboy - 01-28-2008
quote:
Originally posted by mei
Is anyone out there that has a child with Autism/ Autism spectrum disorders having a dificult time with he department of education and feel that they are getting inadequate support and or treatment for their child? As a single mother of two, I have a fourteen year old who was diagnosed with aspergers/ conduct disorder/ADHD/ ......
He has something on every axis. I have engulfed my self in the world of autism in order to learn how to best nurture his strengths and help him become a functioning human being who may someday be able to live on his own and lead a relatively normal life. My struggle has been long and arduous and we still have a ways to go. Throughout the course of his life I attended seminars, attended the university focusing on learning and behavior/psychology.
I spent 7 years doing early intervention with other children on the spectrum as a skills trainer/paraprofessional. Then I became a consultant and case manager. That's a long story ... The bottom line is I was told by many "educators" that my child would never speak amongst other things.
With the use of the Picture exchange card system, serious repitition, positive behavioral interventions, some help from a friend whom has recently been banned from this forum, multiple hospitalizations, and altering the environment. I have overcome the presumptions that were initially made, and guess what!?!
unless you spend a great deal of time with my son you can't tell that he has multiple labels. He is talking, walking, able to follow directions, be interested in age appropriate activities, he appears "normal", yes he has issues, yes he thinks diferrently, his testing scores are well below the 1% on the national average. ButI never gave up on him, or any of the other children that I have worked with. And there are things that work.
It is long, hard, and never ending- but these 'different' people may invent something fabulous, become excellent artists, or many other posibilities. I HAVE hope, I have senn sucess, I a facilitated growth. And these are things that I will carry with me for the rest of my life.
I think I told you when I saw you the other day that my friend and his wife discovered around the age of three that their son Beau was autistic. Don, the father made a must see documentary that will air in April on PBS on autism. This movie will bring tears to even Rambo's eyes, but at the same time give parents hope too.
Anyway Mei, check out the website:
http://www.beautifulson.com
The entire surf community got behind Don on this project/movie an autism awareness. Laird raised money and awareness by paddling across the ocean. I'm so proud of Laird too! I use to hold him when he was just a keiki. I use to surf with his dad Billy for countless years back in da days of da North Shore
http://www.lat34.com/surf/laird_hamilton_dave
The promise given was a necessity of the past: the word broken is a necessity of the present.”
Machiavelli
RE: Autism in Hawaii - Kelena - 01-28-2008
Yes, Laird was incredibly supportive of this project. He paddled from Southpoint to Kauai, if I recall, to raise funds, and to raise awareness of the movie. The man really has a heart.
RE: Autism in Hawaii - Rob Tucker - 01-28-2008
Beachboy, Just a hint. It's not really necessary to "quote" the posting above you. Just takes up space. As you prefer.
Punaweb moderator
RE: Autism in Hawaii - Guest - 01-28-2008
I know this isn't on the Big Island, however, in Honolulu there is a Center devoted to people/kids who have Autism in Hawaii. It's fairly new and just opened in ate 2004.
Here is the link to there homepage. On that site, it also has lots of other info.
-----------------
Coming home soon!
RE: Autism in Hawaii - mgeary - 01-28-2008
In the other thread, I mentioned that my younger son, Trevor, is 17 years old, and autistic. He's a wonderful boy, full of fun and laughter, inquisitive, and loves to show off whatever new thing he has or has discovered. He is also a very complicated boy, with strengths in certain areas that may surprise somebody who doesn't know him well (computers, receptive communication, etc.), but he has challenges with his speech skills, and sometimes his behavior. He is in fact mildly mentally retarded, functioning in most areas as a six- or seven year-old might. But he has his strengths, too.
Trevor has taught me many valuable lessons as a father: patience, unconditional love, appreciation for simple things like a smile and a cuddle, respect for people with disabilities of all kinds, and I could go on. Perhaps more than anything else, I learned from Trevor that the difficulties in life are sometimes a mystery to be experienced, not a problem to be solved. He is dear to me in many ways, and I love him every bit as much (if not more) than his older brother.
The schools here on the mainland are hit-or-miss; some special ed. programs are good, some are not. The state of California has mandated many services for special ed. students, but unless you know what the law requires, the school administrators won't volunteer any legally-required service that they're not already providing, unless you threaten them with a lawsuit.
There is a Regional Center for kids with disabilities, and they assign a case worker to help you navigate the maze of neurologists, behavioral and speech therapists, getting into a school with a good special ed. program, providing respite care for parents, etc., etc.
We took sigh language classes to help Trevor communicate, and he signs perhaps 100 different words. That helped quite a bit with his behavioral issues...he gets very frustrated when he can't get his idea across to you. The more communication, the better, but it's a struggle.
I could go on. As I said, Trevor is a complicated, wonderful boy.
Aloha to you, Mei, and to your son. Blessings to you for the work that you have done, and continue to do. People like you make the world a better place for kids with autism and asperger's.
Aloha! ;-)
RE: Autism in Hawaii - mgeary - 01-29-2008
One more thought: elsewhere, someone posted the following:
"The only cure for autism I see is early dectection during pregnancy then abortion. Increased funding for autism research would only lead to better early dectection and more abortions."
I feel compelled to respond to that, just in case anybody else is put off by that quote from helping to raise funds for research and services for the autistic.
One possible cure that is being investigated is genetic testing. If a specific gene, or combination of genes, can be found with a direct link to autism, it might become possible for young married couples to be tested to see if they have these genes, or combination of genes. In that way, prospective parents, BEFORE they become pregnant, can make choices, or at least be aware of possible outcomes. Nothing like this is now possible for autism, but it is routine for other known genetic disabilities, such as Tay-Sachs syndrome (see the paragraph on "Testing" in the following link: http://en.wikipedia.org/wiki/Tay-Sachs_disease ), hemophilia, and others. This might prevent the abortions that were referred to, because it's possible prospective parents might choose not to become pregnant in the first place, or pursue in-vitro fertilization with donor sperm or ova, or make other informed choices. The current situation is that nobody knows what causes autism, or who might be susceptible to a higher probablity of parenting an autistic child, but there are hints that there are genetic links: http://ap.google.com/article/ALeqM5jq0InE_fpnKgosIP5XML9x_I_rEAD8U2KASO1
Some of the research might also be to benefit the children that are born autistic, in terms of developing new neurological, medicinal, behavioral, speech, and other therapies. When my son Trevor was diagnosed about 15 years ago, the first neurologist we saw told us to "take him home and love him". He did not recommend follow-up with behavioral psychiatrists, nor did he even suggest that we get in contact with the local Regional Center, which is the clearinghouse for therapies and services. We eventually found these things, but it was not due to our first "old school" neurologist.
In the not-too-distant past, perhaps 50 years ago, there were basically no services at all for the autistic. People hid their autistic children at home. Most schools did not have any special education programs whatsoever - autistic children were not formally educated at all. Doctors were even more in the dark than our first neurologist.
We as a society have made quite a bit of progress, but it is only due to concerned parents like mei, and most of the parents of autistic children I know, who push the envelope, insisting on doing better for our kids. The other driving factor for the improvements that we've made as a society is money. People who want to become special ed. teachers, behavioral therapists, speech therapists, etc. all have to pay for college and medical school, and generally speaking, it just takes dollars to fund research into improving the way the autistic are treated. It also takes dollars to provide the services that we have right now, which is exactly the plight of Claudia in the Five for Fighting video. She's being denied desperately needed services due to simple economics.
I really do believe that it's important to raise awareness, and dollars, to help the autistic. To use terms like "eugenics" is this context is inflammatory, and really only adds confusion. If ever there was a "red herring", this is it. There were people who actually practised eugenics in the 1930's and 1940's in Nazi Germany, and I honestly can't believe that's what the organization Autism Speaks has in mind.
(Whew) Okay, rant over. I'll just step down from my soapbox now. ;-)
Thank you, beachboy, for posting the links to "A Beautiful Son" and your friend's website. I looked at both of them. I'll look forward to the April release of the movie, if not to hear the story, then to get a chance to look at the Hawai'ian scenery. Just kidding. And another special mahalo to mei. Parents of special needs kids are special, too. ;-)
Aloha! ;-)
RE: Autism in Hawaii - adias - 01-29-2008
This book may be of interest to some of you “The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science (James H. Silberman Books) (Paperback)”
Until recently the majority of scientists believed that the brain is hardwired and not much can be done to restore damaged functionality.
However, this seems not to be the case, the brain appears to have the ability to rewire its self (neuroplasticity) and even grow new brain cells (neurogenesis);
Interesting case studies of various problems including strokes, autism, ADHD and age related cognitive decline.
http://www.amazon.com/Brain-That-Changes-Itself-Frontiers/dp/0143113100/ref=pd_bbs_2?ie=UTF8&s=books&qid=1201659902&sr=8-2
RE: Autism in Hawaii - bystander - 01-30-2008
Eugenics was not invented by the Nazis but right here in America. Those considered mentally or morally "infirm" were sterilized without consent in 30s right here in the good old USA. If you did some research you would see that. At one time homosexuality was considered an aberration or disease that should be wiped out. This is no longer the case and this is what must happen with autism. I still stand by what I said. Autism Speaks has a eugenic agenda.
It is our contention that all the world's greatest ideas and inventions came from autistic people. Among these are fire, the wheel, transistors, and the theory of relativity. Einstein and Newton are thought by many to have had some form of autism. Eliminate us and you stop any progress for mankind. Even Bill Gates is thought to have AS although he has never publicly admitted it.
http://autisticbfh.blogspot.com/
quote:
Bigotry on Parade
If anyone still doubts that Autism Speaks' ultimate goal is eugenic extermination of the world's entire autistic population, more proof can be found in a Parade Magazine article written by Suzanne Wright, straight from the proverbial horse's mouth—or, perhaps, from another part of the horse's anatomy:
parade.com/articles/editions/2008/edition_01-27-2008/Autism_Changes_Everything
In a span of less than two years, Suzanne Wright's bigoted diatribes against autistic people have included promises to put us in the history books and exhortations to kick us to the curb. Oh, and she also claims that autistic children are "just not there" and can't be taken out to restaurants and movies. So I didn't find it at all surprising to see this unequivocal declaration of Autism Speaks' eugenic intentions in the Parade article:
"We’re now playing catch-up as we try to stem the tide and ultimately eradicate autism for the sake of future generations. If we continue our current trajectory, we’ll get there in my lifetime."
What really needs to be eradicated for the sake of future generations, of course, is genocidal bigotry like this. Notwithstanding her egotistical claims, Suzanne Wright does not control history's trajectory; to the contrary, she has demonstrated quite clearly that she is on the wrong side of history. As other civil rights movements have shown, it's not going to take a lifetime for us to change our society's backward attitudes toward neurological minority groups and people with disabilities—and to kick Autism Speaks to the curb.
RE: Autism in Hawaii - bystander - 01-30-2008
This is a declaration from AFF
quote:
Members of the autism community, comprising those with conditions on the autism spectrum, such as autism and asperger's, are hereby declaring that we are a minority group and wish to be accorded the legal protection and freedom from discrimination that is shown to other minority groups.
We recognise ourselves as a minority group based on the following factors-
People on the autism spectrum have their own way of using language and communication that is different from the general population, is often misunderstood and can cause a bias against us.
Autism spectrum conditions are scientifically proven to be largely genetic and heritable. Many of those on the autism spectrum who have children bear children who are also on the spectrum, this needs to be recognised to avoid the frequency of criticsm of autistic parents and discrimination that is suffered as to misunderstanding of the different needs, and communication between family members on the spectrum.
People on the autism spectrum have a unique social network, this is primarily using communication with text on the internet. It is an invaluable community for many of us. There should be increased availability and recognition for this autism community online so that isolated spectrumites can join and participate.
People on the autism spectrum have our own cultural differences, unique habits, such as stimming and different perspectives than the norm. We feel it is essential that this is recognised as these "traits" are the things that some children and adults are forced to stop by some harsh and intensive therapies. We should have the right to be ourselves, without the pressure to conform and change our cultural differences.
We experience discrimination in various forms, often because of our different use of language and communication, habitual differences such as stimming, and lack of acknowledgemnt that autistic parents may have autistic children, and differences in the children are not due to poor parenting, but the innate differneces of our minority group.
The members of the autism community are facing an imminent threat of possible cure, in whatever fashion that may transpire, pre natal testing for autism that could mean a form of eugenics, and total prevention from genetic counselling before conception. We have grave concerns of the possibilty of being forced to accept a cure, of parents being forced to cure children, and of there being great pressure put on parents on the spectrum to have genetic tests, or pre natal screening. In the same sense that this would be entirely unacceptable to cure someones skin colour, we feel that our differences need to be respected and our minority group to be protected.
We could also include this in a working statement by way of explanation-
The classic definition of prejudice is the one put forth by the famous Harvard psychologist, Gordon Allport, who published The Nature of Prejudice in 1954: "Prejudice is an antipathy based on faulty and inflexible generalization. It may be felt or expressed. It may be directed toward a group or an individual of that group".
THE DEFINITION OF MINORITY GROUPS (OUT-GROUPS):
1. They are oppressed or persecuted at the hands of a dominant group, and as a result of the power differential that develops, they are disadvantaged, and the dominant group is advantaged.
2. They are distinguished by physical or cultural traits that distinguish them from the dominant group, allowing them to be easily "lumped" together and "placed" is less desirable locations.
3. They are self-conscious, with an idea of one-ness or peoplehood, based upon the perception of common suffering and burdens.
4. Membership is not voluntary, but is instead an ascribed position where the person is born into this status.
5. By choice or necessity, they usually marry within their own group (endogamy). It is by choice to preserve a unique cultural heritage or by necessity because the dominant group scorns or discourages intermarriage.