World Autism Day Events at the UN

This Thursday, April 2nd, the United Nations is recognizing World Autism Day with the following events:

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Lecture on “Autism” and book-signing event –– “Meet the Author” DPI Series

Organized by the Autism Society of America,

in partnership with the Department of Public Information

Wednesday, 1 April 2009, at 6 p.m. in Conference Room 4.

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DPI/NGO Briefing on “Autism and human rights:

Understanding and safeguarding the rights of people with autism”

Thursday, 2 April 2009, from 10.15 a.m. to 12.15 p.m.

Dag Hammarskjöld Library Auditorium.

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Unveiling of an art installation entitled “Autism speaks”

(co-sponsored by the Permanent Mission of Chile and the Department of Public Information)

Thursday, 2 April 2009, at 10.30 a.m.

South end of the Visitors’ Lobby.

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Special gathering with representatives of organizations devoted to the field of autism

with a musical performance (organized by the Department of Public Information)

Thursday, 2 April 2009, at 6 p.m.

Dag Hammarskjöld Library Auditorium.

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Interactive panel discussion, and special screening of the award-winning documentary 

“Autism: The Musical”
(organized by the Department of Public Information)

Friday, 3 April 2009, at 6 p.m. in the Trusteeship Council Chamber.

All are invited to attend the above events.

For further information, please contact:

Ms. Graciela Hall, DPI (tel. 1 (212) 963-2300; e-mail dhlweb2@un.org); or

Ms. EditaZulic, DPI (tel. 1 (917) 367-8210; e-mail  zulic@un.org).

Technology vs. Tradition

It boggles my mind.  Maybe it should, or maybe it shouldn’t.  Why do businesses take perfectly good tools and break them to fit the broken process.  Why does logic have to leap out the window every time you put a tool into the mix?  You see my job is to find the tools to enable the business.  I put hard work and research into the tools, evaluating them, getting past the sales people, making sure that how we roll out a system meets the needs of the majority not the loudest screamers.  Adopting technology means you have to change the way you do things.  You have to define a process, revamp a process, and make it better.  If we were doing things perfectly we would not have an 80% turnover rate in our management.  Heck, I f we were doing things right, we would all be commanding larger salaries and using the latest tools and be on the cutting edge of technology.

Regrettably, we are not.  Considering the industry we are in it is a shock, and it worries me a little that the technology being used to support the development efforts of our commercial aircraft in the sky is sub-par.  Not because we can’t afford it or don’t know it’s out there, but because we don’t understand it, and besides it’s comfy in this here bubble. 

It is amazing that one person can derail the use of a system and in essence render it ineffective and useless with one email, based upon one conversation with one corporate lawyer, 10 months or more ago.  What is more appalling is the inability to figure out who to talk to about the issues; informing oneself not just up the food chain, but down and laterally too.  The irony of all irony is that I was forced to sit through a 5 minute online “ethics” training that very day about good communication and not discounting people’s input.  

Assuming that everything remains static or will remain so is to be blind and repeat the same mistakes over and over.  Unfortunately many people get paid on that very premise, built careers on it even.  There is comfort in that lack of understanding, and lack of ability to move forward and progress.  “We’ve always done it this way” is our mantra, our comfort zone, our way of spinning out wheels.

The Bio-Medical Stuff

So, finally we got ourselves in to see the local DAN (Defeat Autism Now) doctor in Ventura.  It was several years in the making.  We had heard about these practitioners and varying degrees of satisfaction with their results from other parents.  Bear in mind that all other reviews were for doctors in other areas, Los Angeles, Orange County, other parts of the country.  This doctor was different, he didn’t bleed us dry as some of the other parents had complained and had been a deterrent for us for a while, especially with two boys.  On more than one occasion we’ve had to decide who needed to go worse at the time.  Our doctor even gave us a 2-for-1 special!

Cost aside, we have been trying to educate ourselves for going on 4 years – (wow! it doesn’t seem like autism has been a part of our lives for that long).  We’ve looked at all of these things that could be underlying causes of the behaviors.  I’ve read up on gluten free/casein free diet, candida, chelation, B12 shots, and many other biomedical interventions for a while now. 

Try finding a pediatrician or regular family practitioner that will acknowledge that there is any merit to doing these things that doesn't look at you sideways, completely crazy, or totally stupid.  It can be an incredibly degrading experience to ask a doctor about many of these things.  They make you feel as though you don’t care about your children that somehow you are the one doing something wrong, or that just can’t cope with the fact that you have a child with these issues.  There is a real apathetic tendency in many of the doctors I have come across in the course of the last 8 years to write off your concerns as a parent, or dismiss your ability to intuitively know whether something makes sense for your child.

All of this has caused me to come the realization that we have to break a stigma.  Our society has this notion that doctors are all knowing.  The most refreshing thing I’ve come across in recent years is a pediatrician who is open to the fact that we don’t want to risk vaccinating our third child with the first two being on the spectrum, and hearing him admit he doesn’t know much about autism. 

Let’s face it – most of these doctors have been practicing as long as I’ve been alive; in some caseses longer.  It begs the question whether any of them have picked up a book in as long – or whether they realize that there are still people out there that have critical thinking skills and can read and don’t always accept the first answer given to them.  Mainstream medicine including doctors, medical practices, and hospitals are making decisions based upon what is in their best interest financially – not the best interest of their patient’s health.  That however is a topic for another day. 

The point I am trying to make here is that we as parents have a responsibility to be the advocates for our children to ensure the best possible care and best possible results for our children.  No one is going to look out for them the way we will as parents.  It has been my answer when people have asked me about doing the diet, and it holds true of any and all therapies.  Don’t rely on anyone else to tell you something is or is not working for your child.  You know your child better than anyone.

If anything, after our visit to the doctor I feel a little guilty.  I feel like we sat on the information that we have slowly gathered over the past few years too long.  It almost feels as though we should have done some of these things sooner.  We knew they needed to be done, or something needed to be done.  The reality is that critical piece was missing; the support and reassurance from a professional that respects and acknowledges our concerns and observations as parents.

Time will tell how these treatments go for the boys.  They are now 7 and 5, there are still a few critical years of development to go, with luck and a great support system we’ll turn them around and make a difference in their behaviors, their social lives, and their futures.

"The Diet"

I began my own journey down the path of “the diet” in denial as well.  My own mother who still fails to see the complexities of the execution and that as a diabetic it is absolutely applicable to her own health is the one who first suggested it for our two autistic boys when they were 2 and 4.

Sitting in a training session next to one young, naïve, software engineer who relies daily on 2 big Rock Star energy drinks to get through the day.  This same guy wonders why he crashes at 2:00pm every day, and he does doze off quite often in training.  Maybe it is the mom in me, but I point out his excessive sugar consumption.  Mind you one of these 20oz cans has 31 grams of sugar per day.  So for those of you not so good at math that is:

2 cans x 2 servings x 31 grams of sugar = 124 grams of sugar

So I Google sugar intake calculators and find this handy-dandy calculator and send it to him:

http://www.healthmyths.net/sugar_calculator.php

Today, my friend the software engineer tells me he’s switching to sugar free Rock Star.  So, I go on a quest to get him more information and help him educate himself on healthier choices.  I’ve read several articles about artificial sweeteners, this just happened to be one of the first I came across:

http://www.splendaexposed.com/

I send this out because I see the effect of artificial sweeteners, dyes, etc. on my own children and have done Gluten Free/Casein Free diets for going on 3 years.  It is possible, but you have to change your mind before you change your diet (or that of your children). 

Time will tell for my co-worker.