Autism Bites

Autism x 6 Dad Working to Win a Smart Car

2009-12-14T10:49:00.009-07:00

A few months back I became a distributor for MonaVie.

My website

Company Awards received: Inc 500 #1 Inc 500 #14 Inc 500 #31
MonaVie takes top honors for Utah growth

I discovered that they had a contest running each month until the end of December. The Grand Prize? A Smart car with a pretty cool paint job.

After six weeks of working on this YouTube entry (click here to watch) my video is: E and the MonaVie Girls. The person who gets the most views each month has the chance to go for the car in January. When I get the most views then, the car is mine!

But I need everyone and their friends, on FaceBook, MySpace, blogs, groups, etc. to tell ALL their friends and their friends, etc. to pull this off. I'd appreciate your help. Thanks!!

Dad

Autism x 6 Benefit Concert to feature Lady GaGa and David Archuleta...?

2009-11-25T09:51:00.004-07:00

An amazing thing happened to us yesterday. Robin got a phone call from Todd of EATON Alliance. They are an organization that helps people with Autism adjust to life. It seems that we missed a past email in our autism_bites@yahoo.com email box that he had sent. (like we don't do that very often, LOL) Check their site for additional details.

Anyway, Todd said that they want to do a benefit concert in Provo, Utah on or about the 17th of December. The musicians are still yet to be determined but a quick poll from the family came up with a short list of who we'd like to see:

Lady GaGa - Her songs that are favorites with the kids is "Paparazzi" and "Pokerface". She obviously is NOT an unrevealing or conservative dresser-- and not to start any rumors but, with her musical genius and very creative outfits I've been wondering if she may be an undiagnosed Aspergers. And I hope that if this blog is somehow read by Lady GaGa I do not intend ANY disrespect. Our Aspergers children are very talented and we love them and their creativeness. Will she be there? That would be sooooooo awesome!!!

David Archuleta - The whole family watched American Idol that season and voted for David from the beginning. Of course part of our hopes for David to win is because we know him. It's been mentioned he is from Murray, Utah (the same city we live in) and that he is a Mormon (Church of Jesus Christ of Latter-Day Saints), we are too. But he also lives just a few blocks from our house. Bobby goes to Boy Scouts and knows David's younger brother. And in the past month I've seen him at church twice. Will he be there? That would be sooooooo awesome!!!

Jerico Road - Robin has enjoyed their music for years and is hoping to have their music on the soundtrack of the movie script she is writing. She and Bobby went to a concert of theirs last year. Will they be in Provo that night? I think they live there. We hope they can be a part of the concert. That would be sooooooo awesome!!!

We are honored and humbled by EATON Alliance's wanting to have this concert to raise Autism awareness and as a benefit for us. Truly honored.

If you live near by or not, and would like to be there, check with Todd for additional details. They also plan to have tables available for people or organizations that work with people with Autism to set out their information.

Dad

The Chicago Tribune Takes on Alternative Autism Treatments

2009-11-23T22:12:00.002-07:00

Below is the blog post of Lisa Jo Rudy of About.com Guide to Autism. To use the links in the story go to her original post here. At the end of the article you will see how I feel about it.

"This week, the Chicago Tribune came out with a long piece entitled Autism treatment: Science hijacked to support alternative therapies and subtitled Researchers' fears about misuse of their work come true. In essence, the article is a condemnation of the Defeat Autism Now or DAN protocol and other biomedical treatments for autism. Among the article's statements:

Most physicians recommend intensive behavioral therapy and, if asked, warn parents away from experimental treatments.

Even so, studies have found that up to three-quarters of families with children who have autism try at least some alternative therapies.

Physicians and others in the movement -- many affiliated with the organization Defeat Autism Now! -- say their treatment protocols rest on a foundation of solid science. But the Tribune found otherwise after speaking with dozens of scientists and physicians and reviewing thousands of pages of research and court testimony.

Later this week, another article came out entitled Autism treatment: Success stories more persuasive to some than hard data. The gist of the second article: kids with autism may improve with or without therapies, so it can be very hard to know what's "really" working.

As might be anticipated, the articles have raised a storm of protest -- and an equally hefty shower of approval. Two regular About.com commenters, Harold Doherty and Autism News Beat, take opposite perspectives. Harold is disturbed by what he feels is an anti-therapy stance by the Tribune, while Autism News Beat says "It's called journalism..... Get used to it. Expect more in the coming months as the news and entertainment media's narrative switches from "alternative medicine produces miracles" to "science is being highjacked to fool parents". Age of Autism, some of whose writers are specifically presented in a negative light in the Tribune articles, are predictably vocal in their criticism.

Whatever happens next, it seems clear that the autism wars are nowhere near over. In the present battle, the Chicago Tribune has made its point of view very clear indeed. It will be interesting to see whether Autism News Beat is right that the "narrative is changing."

My guess is that consensus is a very, very long way away."

My comments:

The fights and arguments will continue to go on and on and on... until someone does a COMPLETE study of all that is out there without bias.

Is that someone the government who is joined at the hip with the AMA, FDA, the big drug companies and more? Or will it be Autism Speaks funded by well meaning parents and concerned others?

Either way those two DO have biased agendas. And that leaves parents and their children on the sidelines still waiting for the shining knight to come riding over the hill with help. I don't think it'll happen.

I think we (Autism parents) are going to have to do it on our own if we can expect to see any real results. But how to afford it? That's the 64 million dollar question.

I hope that we can joined forces to create the wealth needed to say to hell with the government and the promises of hope from others that will never be fulfilled to make a difference for our children today.

Dad

Beating Up Autistic Kids

2009-11-17T20:36:00.004-07:00

I just read a story from Texas where teachers are hurting children with special needs in the name of discipline.

On the Facebook forum I answered questions from a concerned parent: I do not have an autistic child but ... My children attend a school that does have autistic and other special needs students. What is the best way to handle a situation where a student with special needs does harm someone else or does bully or spit on someone? I know it happens but do not know what parents of special needs children think is proper procedure. If my son spit on someone or bullied someone or hit someone they would be disciplined and possibly suspended and I am wondering what is acceptable punishment for special needs students. I am sorry if this upsets anyone but I really want to know?

I said: "I have my methods that work very well, however I will probably upset some 'gentler' folks. I use what has been termed in the past as 'tough love'. Bottom line I don't let them get away with anything. It probably helped that I had 4 NT children in a first marriage. I treat our 6 ASD pumpkins like I would an NT child and do not let them get away with bad behavior because they are 'disabled'.

At our school they use a two hand to one arm hold on a child to guide them away from a situation and to a classroom set aside for children having problems. An aide or teacher is there to help direct their emotions away from things harmful or disruptive.

For a school to allow a child to be physically harmed in the name of discipline is criminal and arrests and jail time need to be given. If a parent did the same thing it's abuse and the state steps in. School districts and teacher must be held to the same standard. If I can help in any additional ways please let me know. That goes for anyone else reading this too."

What do you think?

Dad

Created a New Tote

2009-10-18T12:33:00.003-06:00

When Robin and I got the ideas for our t-shirts, we were only thinking about how they would help our lives. However, when other parents and families of Autistic people heard about them they wanted us to make them available to anyone. Thus our Autism Bites t-shirts were born.

Since that day I've had a few requests to add to the choices available. I was recently contacted by a parent and a group of teachers that wanted a tote bag with a face and saying combonation that we did not have. Here is what they wanted -

Its a great idea and one that can be used for any disorder, not just Autism. Christmas is approaching, if you can't find what you like in what we are offering let me know and I'll see what I can do. Thanks!

Dad

Swine Flu Shots?

2009-10-08T17:22:00.002-06:00

Every year the "experts" predict what flu shot is needed for the upcoming season. From many reports and books I've read on the subject (what parent of an Autistic child hasn't studied this subject?) the favored choice is effective less than 25% of the time.

It's a crap shoot.

Then there is the 'extras' that are included in each dose. The thimerosal content of a lot of shots has been greatly reduced, but not necessarily the aluminum or formaldehyde, or the use of fetal and animal tissues in the manufacturing of them.

I've read that this shot DOES include thimerosal. Thanks for your concern CDC, but no thanks!

Autism x 6: How Do We Do It?

2009-10-07T21:48:00.002-06:00

We've been getting this question a lot recently in emails. And it is a question that we've been getting from day one. My wife is the glue that holds us together and works hard to make our family feel more 'normal'.

We both grew up not knowing what a special needs family was. The last few years have been a crash course, near literally. We are not perfect or have any unusual talents that help us make it though each day. We just plug along and do the best we can.

Some days it is overwhelming and maybe we escape with too many DVD rentals or midnight snacks, but you do what you have to do to maintain your sanity.

No one asks for challenges like these precious angels bring to a family. However, we figured that God must really want to straighten us out to have given us six children with Autism. I feel they are here mainly for us to learn from them, instead of the other way around.

We used to complain a lot more (i.e. not enough money, need a home of our own, etc) but we are getting better. Hey! It looks like the children are doing a good job with us after all.

They are the special ones. Me? I'm just the Dad.

Autism Rate Now 1 in 100, Still Autism x 6 for Us

2009-10-03T09:49:00.001-06:00

1 in 100? It's scary, it's terrible, it's the end of the world!! Naaaah, if you have children with Autism you just learn to deal with it.

However, friends don't come over any more, family avoid you, you're in foreclosure or going bankrupt. If you are so bold as to step out into the outside world you get the "look" or stares usually followed by unsolicited parenting advise.

You may not be able to hold down a regular job. You need a lot of time off. You had the hope that there was a government program, an agency or charitable organization that could help with SOMETHING.

Then 'how life really is' sets in.

After awhile you come to realize its all up to you. You stop feeling sorry for yourself. You stop caring about the mean people, uncaring family members or government indifference to your plight.

You come to accept your life with an Autistic child(ren). Then you learn to embrace it. To appreciate their innocence.

Sure the meltdowns, the poop, the constant messy home STILL aren't that much fun -- but you deal with it. You realize your blessings and find peace in your life.

1 in 100? It's still 6 in 6 for us.

Dad

Autism X 6: A Year Later

2009-09-29T21:13:00.003-06:00

On October 1st Discovery Health channel will be showing our family story... again. During this past year it's been aired about 8 - 12 dates that we know of. It was shown in Australia and in England as well. Discovery Health did not tell us about the Australia showing (they don't have to). We found out from a number of emails from some new Aussie friends.

The show in England had a bit of lead up advertising and media attention. Robin was interviewed by a woman's magazine, we asked for a copy like we always have done with the other media, but we didn't get it. The most amazing thing for us was that we did not get a single response to the documentary from anyone in England. Maybe something was lost in the translation. Not sure.

We've had all the range of responses as you might expect. People wondering how we do it, other wondering WHY we did it. We received email from well wishers and others calling us the foulest names possible. Some have told us we deserve a Extreme Home Makeover show, and others said we don't know how to clean up a home. We've been accused of using our kids for financial gain, but the truth is we are worse off financially then a year ago -- just like the rest of the country.

But we are glad that the show was made and the other documentary, Keys to Unlocking Autism, that we were a part of. Awareness is the key and the beginning steps to making the life's of persons with Autism better. But even though the term 'Czar' is getting a bad rap lately -- we need one. An Autism Czar to coordinate the efforts correctly, as much as possible.

We call ourselves 'Autistic Parents', other parents know what we mean. Some goofs have thought we were saying we are Autistic too. We know how to handle the joys as well as the crap, literally, being parents to six children with Autism. And we're still plugging away a year later.

Dad

Autism x 6: Update to Our Main Website

2009-09-11T17:07:00.005-06:00

I've made changes, updates and have refocused the meaning of our website: AutismBites

Autism with six children is still not the best part of the day, however we want to focus more on the positive. We've found that certain things work for us and make life A LOT better. Maybe it can help your family too.

Updates are on the main page, about us and links. Who can tell me first, the major change made to our blog?

Dad

Autism x 6: Living a Day at a Time

2009-08-29T13:01:00.005-06:00

According to Robin, when I get an update during our nightly phone calls, Bobby is the one who has taken a hold on the list of chores I had given each of the older three kids. Emma and Nephi... not so much. I have given them a cash incentive for chores done to help keep our home somewhat orderly. But it looks like they would rather have the dolls, Legos, Transformers, etc. without the labor. They will be sad to learn that that is NOT how it works.

I have been busy working, of course, thus my lack of attention to this blog and other places on the net I used to hang out. My past few nights, actually 3 in a row I've had to drive during the midnight to 6am hours. This morning I did not HAVE to get up early so I didn't set my alarm clock and woke up naturally. 12 and 1/2 hrs is what it appeared that my body needed.

Tonight and all day tomorrow I'm camped out at the Flying J near Indianapolis, IN. I've been thinking and writing ideas down for a fiction novel. And the last time I was in Salt Lake I talked with the CEO of my trucking company, Central Refrigerated, about the idea I had of applying informational Autism Awareness stickers (10 or so inches across) on the company's trailers. I'm hoping that the idea will catch on and that other companies and possibly independent owners will do the same. I hope to find someone (Autism Speaks, hmmm...) that will pay to have them produced. An idea I had anyway, we'll see where it goes.

Dad

Not Exciting Enough

2009-08-10T21:53:00.003-06:00

Well, it looks like no one is interested in seeing me on the road or I don't get to where people are. So I'll forget the 'travelog' and write of other things instead. In Joplin, MO tonight. I'll try to update more and attempt to be more interesting as well.

Dad

Autism X 6 Dad's Travels

2009-08-05T06:41:00.000-06:00

Today I will be stopping at the TA Truck stop in IL (not very far from Chicago) on I-80 off of exit 112. Email me with your info (see details in posts below).

Dad

Back and Gone Again...

2009-07-31T22:31:00.003-06:00

I was back home this past Monday and Tuesday with the family. I did not update where I was between then and now because I ended up doing a bunch of night driving after that and would not have been able to visit. On my way to Streetsboro,OH, due to be there on August 3rd.

Robin is hanging in there. The house is a wreck most of the time as we still struggle to get the three oldest to help out, but they are improving. Tired now, will update more soon.

Dad

Where's Dad?

2009-07-18T18:20:00.004-06:00

As promised in the post below here is my schedule of stops for the night for the next few days:

Today I'm at the Flying J truck stop on I84 at Twin Falls, ID. Tomorrow night I'll plan to stop at the TA truck stop on I80 exit 214 in Rawlins, WY. On Monday night, I'll be at the Pilot location on I80, exit 312 at Grand Island, NE.

*** UPDATE *** Tuesday night, actually afternoon on, I'll be at the Flying J truck stop in Kansas City. On I435 exit 57...

Hope the word gets around and some of you send an email to: autism_bites@yahoo.com with your phone so we might get together.

Dad

I'm Coming to a Town near You

2009-07-17T07:42:00.002-06:00

Life is settling down to somewhat of a routine once again and I'm back to blogging and Autism advocating. I've added videos back onto our YouTube page and will be adding more as I'm able.

As I travel in my 18-wheeler doing my new job as a trucker, I make stops all over the USA. I would like to meet as many of you as I can. As I receive assignments to know where I'm going, I'll post to this blog what truck stops I expect to stay at at the end of each driving day. If you live in the area I'll be staying, send me an email at: autism_bites@yahoo.com with a subject of: truck stop visit. Include your phone number, I'll call to set up a time and we can get together. I'd like to take pictures too and include them in this blog if you don't mind.

Let me know what you think and any suggestion you may have.

Dad

Life on the Road

2009-06-14T22:48:00.003-06:00

This is just the second time I've been home since May 28th when I started my final "on the road" training to be a truck driver of a 74' tractor and trailer. I've been to WI, MI, IN, UT and CA, then of course through the states in between. Two things have been the hardest so far: trying to sleep on the bed in the sleeper of a moving truck as it bounces along the Interstate roads and getting a sore butt while driving for 9 - 10 hours straight.

Two more weeks and I'll be assigned my own truck and I'll be able to better establish a routine for me and my family.

Dad

Things Are Looking Up

2009-05-23T23:24:00.005-06:00

I like many have been struggling with earning what our family needs lately. Last year was going well until November when the economy took its hit. I've tried to continue to earn with our internet businesses, BUT it wasn't making it. I sent out nearly 100 resumes in the last couple of months and only got a few nibbles. So after much discussion between Robin and I... prayers etc. we decided that I should go through the training of becoming a over the road trucker.

The accelerated class I started 2 weeks ago had 42 students, yesterday just 13 were left that passed all the requirements. I was in that group, of course ;) By the end of this coming week I'll be hitting the road for an additional 14,500 miles with a driving trainer to learn the actual on the road experiences. It will be somewhat difficult for Robin and the children, but I have to earn for our needs of course. Please pray for her especially and the family generally if you would. After I get settled into the job I'll be back on this blog and some of our other online hangouts.

Dad

Catch You All Later

2009-05-03T15:57:00.000-06:00

Hey followers... I'm bugging out of here for I don't know how long. Life is crashing around us lately.

Autism Awareness Month - So What !!

2009-05-01T18:37:00.000-06:00

So what has Autism Awareness Month done for you? Did you think more about your child and their Autism? Let me guess, you think about it all the time anyway. An 'awareness' month, has not really changed how you deal with Autism. Am I right?

What about your family? Did they come over to the house against their self-imposed avoidance of your family? No? Huh, really. You mean they didn't offer to watch the kids? Give you a break? Nothing?!? Didn't they know that it's Autism Awareness Month?

OK, ok. But, I bet you saw THAT celebrity on the talk shows again with their latest book on curing Autism. Do you wonder if it's all about adding some extra zeros into their bank account? Most of the blogs and posts believe that. I don't know, I'm not them. I hope they have a higher goal then just money.

But, there sure have been lots of newspaper stories and local TV reports. So at least some 'awareness' is going on. Right? Did you hear about some sort of new laws... or mandates that came out of Washington this month? Have we seen any real details and how it can positively affect families of Autism? No? Me neither.

I was hoping that since President Obama had lots of changes in mind, that it would include Autism. Autism IS high on his list of things to do. It says so on the White House website. There is next years Autism Awareness Month I suppose. Hmmmm, there still are a couple of days before the end of the month. Maybe we'll get a surprise Autism birthday present!

Hey! Stop holding your breath, I'm afraid you'll pass out.

We should be grateful that we have our own month. But is it for us? Are we getting any real benefit? What do you think? Is it just a bunch of lip service? To make us think that the media, government, etc. do actually care and are concerned?

If not, you need to get off the couch and DO SOMETHING about it! Every MONTH needs to be Autism Awareness Month, where things are getting done to help your situation. Not just a bunch of talk. If you as a parent or a person of Autism don't speak up and I mean really do some shouting... otherwise, we are just sheeple (people that act like obedient sheep) and be thankful for whatever crumbs fall off the 'table' of resources and finances that happen to come along. I'm just one voice, we need many more!

Otherwise, Autism Awareness Month is not for parents or persons of Autism... is it?

Dad

Chicago Police Officer Beat Autistic Teenager

2009-04-26T16:56:00.002-06:00

Another story of an Autistic person not being understood. Two posts below this one is a link to a training video for police officers. Please post the HECK out of this link!

The boy in the above story sounds a lot like a 16 year old version of my Ammon (5). Like Ammon, he was watching cars drive by and when someone came up to him to see what he was up to, he ran off. That is EXACTLY what Ammon would have done.

Just because someone does not recognize a policeman's authority does not deserve a belt to the head needing EIGHT staples! I'm hoping that there is more to this story then some rogue policemen whacking teenage Autistic kids.

I LOVE my children with Autism, and do not want to change them just to make ME feel better. It's stories like these that make me want to find that elusive 'Autism Cure' so they will better understand the world.

Dad

Fed Up With Autism Fighting

2009-04-17T14:49:00.003-06:00

Here is a great posting opinion from Tiffany and my comments too:

Tiffany this is a fantastic post and one that EVERYONE should follow the advice of. Every family is different, each Autistic child is different from every other Autistic child. No one should tell another parent or person with Autism what they should be doing with their life... even if they think they KNOW that family from watching them on TV. ;)

Our family goal is to increase the awareness, acceptance and understanding of Autism and all of it's various aspects and effects on families.

Some have accused me of trying to make money from my children. First if they follow your post's advice they shouldn't assume they know what I'm doing and be quite. However we've made money from our situation from a 'location fee' from the film production company. This is a standard in their industry. Then we have made an income from the sales of the Autism t-shirts that Robin and I designed.

But all the other TV, radio, magazine, blog and internet interviews we have received nothing. AND I'm not asking that they do.

95% of the comments we get on our blog or from emails have been positive and supportive. And I will continue to advocate for my children until the day I die. We too did not yell, "Yipee!" when we got the diagnosis for the children. We too did LOTS of grieving, for around 1 1/2 years. I was let go from the job I had at the time because quite frankly, at the time I was useless and not able to have my head into work. Worrying and wondering about what life was going to be like with Autistic children was just too much. It was tough and still is and IS financially hard. And I'm not sorry and will not apologize for mentioning that Autism hits families in the wallet. We've received many, many emails confirming this from other families. And they too are glad that the world is starting to understand those financial hardships. Its a FACT that people need to realize.

We need to stop the fighting among ourselves. It's a waste of time, effort and emotions. Another parent may want to chelate or put their children through test after tests or treatment after treatment after treatments. Or do nothing. Another parent may not agree with either and you know what? Each one is doing right thing for THEM.

That "Autism Czar" appointment that President Obama promised? He/she should understand all the above of what you and I have said here. And have a plan for ALL families and persons affected by Autism. And we need to get the support from this Czar... NOW. Too much talk and not enough action.

My creed: Autism IS a Spectrum Disorder, CAUSED by a spectrum of reasons, needing a SPECTRUM of treatments or solutions and requiring a spectrum of funding.

Peace and Blessing to all... Nuff said.

Dad

New Law Enforcement and Autism Training Video

2009-04-13T17:16:00.003-06:00

Last week Robin and I attended the Autism Council of Utah (ACU) It was the second I had been to and it is always well attended by various state agencies, other public and private groups and parents.

One of the highlights was the showing of a DVD geared toward Law Enforcement and Autism. SaharaCares developed the video that can be used to train police officers on how to recognize signs of Autism, and gives constructive suggestions for dealing with people that have Autism.

I hope that this can go out to police departments all over the country. Too often we heard of some Autistic person having a bad experience in this area. After watching the video tell me if you too teared up like I did.

The website link with video, click here

Dad

Autism X 6 and Other Media Appearances

2009-03-30T18:31:00.003-06:00

Mark your calendar for April 6. Unlocking Autism will be on that day, click here for times. Our producers did a great job again. This documentary shows four families that have children with Autism. You will see our family as the last profiled. That will be followed by our documentary, Autism X 6. For those times click here.

I was interviewed a few months ago and this article came out this past Sunday across the US in American Profile.

Dad

Utah Lawmakers Say No to Autistic Kids

2009-03-15T23:45:00.002-06:00

Thousands of parents made the trek to the State Capital building many times over the past couple of months. They attended the announcement, committee and floor votes for Clay’s Law. Just what was this landmark proposal? During the past legislative session parents were hoping to get financial relief for treating their Autistic child. What we they asking for? Large grants for experimental treatment methods? No. Did they want a free gift from taxpayers for unproven therapies? Nope. Parents just wanted their insurance companies to provide coverage for early intensive behavioral intervention for children with Autism. Interventions that were already known to be the most effective methods to help these affected children.

But, the costs would way too much for policy holders that may never need these services, opponents claimed. This proposal would have resulted in a less than 1% increase in insurance premiums. The ‘big money’ fact to consider is this: Untreated autism is estimated to cost approximately $3 million over the person’s lifetime. Intensive early behavioral intervention, the type covered by the bill, can cut this down by $1 million. That means the bill could pay for itself with the savings from just three or four children. With 1 of 79 boys in Utah receiving an Autism diagnosis the long term savings would have been tremendous.

So what will they be getting? An option to purchase a ‘rider’ type of policy before the child reaches 3 months of age. Not much help because of the fact that the average ‘severely’ Autistic child is not diagnosed until 18 – 24 months. What about the parents of children who already have an Autism diagnosis? Nothing. Chalk up another one for the insurance companies who seem to be better at taking care of themselves lately.

Dad