Remove, Replenish, Repair, Restore

Remove, Replenish, Repair, Restore - this is the mantra modestly scribbled on the white board at the DAN! doctors office on our second visit to see him about the boys.  It has been a month and a half since we first took them in and we've done our best to keep up with the regimen of Vitamin C, Vitamin A, liquid vitamins, probiotics, fish oil, Calcium, DMG, Q10, and oh yeah, they have to be fed too.

When we first started I thought to myself, no problem they'll just take their vitamins and it won't be a big deal.  The first night I gave each one their probiotics to take with their milk.  I guess I take for granted that I know how to choke down a pill like it is second nature.  AJ took it like a wild man chewing his gel-cap up like it was steel.  Jonah's 20 minute ordeal of spitting up water and seeing the contents of his pill everywhere and not getting it anywhere in his body made me reconsider how to administer.  Opening the capsule and dumping it into a smoothie it is.  That is how lemon/berry/fish oil smoothies were born!

So, we've been doing all this since March and we took a morning off sometime in April so that Joe and I could take the boys to get their blood drawn for the Age food sensitivity screening and Hard Metals screening tests that I had purchased from my doctor in Westlake almost two years ago.  As you can see, the thought of getting blood taken was a deterrent for us.  AJ went first and was a trooper, Jonah, on the other hand was a little more resistant.  Let's face it, he screamed his head off.  Crying it hurts!  It hurts!  Take it out!  Take it out!  It got so bad that I had to take AJ outside and we could still hear him.  Of course this threw AJ into a spiral as well so here we were with two screaming kids, but the blood got collected and all was right with the world once more.

So, this past week we finally met with the doctor to get the blood results.  As we have always known, our boys are polar opposites.  Jonah's little body still seems to have absorption issues. His vitamin levels were very low, but on the bright side, so were his levels of hard metals including arsenic, lead, and mercury among others. 

Jonah's test results:

AJ on the other hand, has great vitamin levels, with one exception.  The downside being he is harboring very high levels of heavy metals.  So, after discussions with the doctor, we will likely start thinking about chelation treatments for him here in the next couple of months. 

AJ's test results:

So, we left the doctor's office with a whole new round of supplements, the next step in the probiotics, new and additional vitamins, and of course B12 shots that the boys must do twice per week.  We agreed to a division of duties, Joe will do the injections; I get to do the stool samples for their next round of tests.  I can't wait.  I'm sure to have a blog post about that.  

Did I mention you'll do anything for your children?

Autism Parents - We Are Not All Sheep

Okay, so the blogging thing is time consuming and I haven't been the avid blogger that some of my friends have been.  Did I mention I have three jobs?  Well, when I do find time to read something that doesn't involve work still has to be done at lunch, sitting at my desk.  Suddenly I am seeing the correlation between my lack of activity and schedule. 

When I do actually get a chance to do a little reading and review what's being "twittered" about I often follow links to various articles and message boards.  I happened to follow one of these links from twitter to a website for Gawker who happened to be ranting that day about Oprah and Jenny McCarthy.  

As many of you know, people either love her or hate her, and in the autism and vaccine communities it is especially amplified.  Since vaccinations are such a hot topic this day in particular the responses to the post were especially pointed.  Sadly as with many message board posts there were very few thoughtful posts.  Two which were particularly disturbing to me:

“Jenny McCarthy is the main example of a group of people called "Science-tits". They use the fact they have mammories to spout off the craziest/dumbest things in the world, and people believe them. What are Jenny's credentials? Her main claim is she has "Mommy Sense", which is how she diagnosed her child as Autistic, and also how she cured one of her children of it.”

“I feel really bad for these parents. Their need to find a cause for their children’s' condition plus one bogus study in a very prominent medical journal that was later debunked and retracted by the medical journal has led them down a dead end path.”

Clearly these people cannot understand the magnitude emotionally or psychologically of what a parent must go through not just in the initial stages of learning about their child's diagnosis, much less what it means to live with it and deal with these behaviors, setbacks, and the reality of what a diagnosis of autism means.  For some of us, there is a glimmer of hope that our children can and will become functional members of society and that their hopes and dreams can be fulfilled.  The trials, tribulations, and hopefully triumphs that we as parents and those of our children are what change us and make us who we are regardless of whether and intervention we try with our children is successful.

Yes, inherently, just as any parent would do, we are willing to do ANYTHING it takes to ensure the quality of life for our children and our family is the best it can be.  When I say anything I really mean anything.  My kids have Berry/Lemon/Fish oil/Probiotic smoothies before bed just about every night and they still love me.

However, for people to dismiss us as sheep who will buy anything that anyone is selling out of desperation does not truly know a parent of autism.  I would never blanketly praise Jenny McCarthy, (or any one person for that matter), because it is simply not that straight forward. 

What works for one child with autism does not work for another.  We are lucky enough to have not one but two beautiful sons with autism, and they are about as polar opposites in their abilities and responsiveness to the therapies we have exposed them to as anyone can be.  But we are not some pathetic population who is blindly looking for anything to make our children normal.  I don't want my children to be normal, I want them to be happy, successful, and themselves. 

Parents of children with autism are a diverse group.  We are educators, lawyers, engineers, entepenurs, and even stay at home moms.  We think for ourselves, we continue to educate ourselves and we listen to our children and each other.  The bottom line is no one has the answers for our children least of all us.  We must seek out the information that best suits our situation at the time given the current knowledge and available therapies.  

Uninformed and pitiful generalizations and pity for our situation are not necessary.  Don't feel sorry for our situation, or judge our choices, keep an open mind and be willing to learn from it.  

My First Twitter Party!

So I've been Twittering for the past month and a half or so.  What is Twitter you ask?  It is social networking - microblogging if you will.  You update your status periodically and develop a following, while in turn following other interesting people.  

I keep it on my iGoogle page, on my blackberry, and of course you can go straight to Twitter.com.  Twitter allows you to capture those random thoughts that you would normally internalize for fear of saying something out loud at an inappropriate time.  One could almost say that it is an outlet for the random observations, frustrating moments, and amusing events that happen throughout the day - 140 characters at a time.  At least that's the outlet I use it for.  

In the process of updating reading updates, and looking for new and interesting people to follow, I've discovered an incredible community of Gluten Free/Casein Free twitterers. Some have Celiac, some are chefs, service providers, and still others parents like myself just trying to learn more and more about what to feed my kids and eliminate as many issues as possible.  

So last Friday night one of the new Twitterers that I follow Bonnie Sayers organized this great Gluten Free Twitter Party.  Okay, you barely learned about twitter was, and now there are throwing parties.  It's really not as complicated as it sounds.  Think of Twitter as being in a chat room with many people and posting randomly.  A Twitter party then becomes a chat room of people all on the same topic.  The party started about 7:30 - and no it's not like back in college by any stretch of the imagination - sadly, those days are over.  Instead it was spent in front of the computer on a Friday night with the children running around screaming.  There were times where it got to a point where the conversations were so quickly being updated and the twitterers typing so feaverishly that one could only read every other post.  Hardly the same, but it was still great!

Knowing that many people I know still look at me funny when I talk about Twitter, I figured it was a great way to pass on some of the knowledge that I gleaned from participating in the intense knowledge transfer of people from all across the country on "the diet".  It was fantastic to realize there are so many people out there battling the same daily issues of what to make, how to make it and where to get it.  With any luck, I've also sparked some interest in my new favorite obsession - Twitter itself.  

So, as promised here are some of the many resources I gathered from the infamous "Gluten Free Twitter Party":

Great Blogs

Celiac Snack

http://www.celiacsnack.com/

Karina's Kitchen- Recipes from a Gluten-Free Kitchen

http://glutenfreegoddess.blogspot.com

Mom Cooks Gluten Free 

http://momcooksglutenfree.blogspot.com

Switch 2 Gluten Free

http://switch2glutenfree.com

The Bon Bon Gazette 

http://www.bonbongazette.com

Great Resources

Dairy Subustitutions

http://gfcfexperience.blogspot.com/2008/11/casein-free-substitutions.html

Flour Chart

http://benevolentkitchen.blogspot.com/2009/03/comparison-of-flours.html

Grandmas Gluten Free Baking and Cooking

http://grandmasgfbakingncooking.ning.com/

Gluten Free Meal Planner

http://www.mealmixer.com/gluten-free-meal-planner/default.aspx

World Autism Day Events at the UN

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

____________________________________________________________

 

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.

____________________________________________________________

 

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.

____________________________________________________________

 

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.

____________________________________________________________

 

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.

____________________________________________________________

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.