Monday, December 14, 2009

Autism x 6 Dad Working to Win a Smart Car


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

Wednesday, November 25, 2009

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






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

Monday, November 23, 2009

The Chicago Tribune Takes on Alternative Autism Treatments

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

Tuesday, November 17, 2009

Beating Up Autistic Kids


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

Sunday, October 18, 2009

Created a New Tote

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

Thursday, October 8, 2009

Swine Flu Shots?



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!

Wednesday, October 7, 2009

Autism x 6: How Do We Do It?

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.

Saturday, October 3, 2009

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

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

Tuesday, September 29, 2009

Autism X 6: A Year Later

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

Friday, September 11, 2009

Autism x 6: Update to Our Main Website



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

Friday, July 17, 2009

I'm Coming to a Town near You

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

Sunday, June 14, 2009

Life on the Road

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

Saturday, May 23, 2009

Things Are Looking Up



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

Sunday, May 3, 2009

Catch You All Later

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

Friday, May 1, 2009

Autism Awareness Month - So What !!

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

Sunday, April 26, 2009

Chicago Police Officer Beat Autistic Teenager

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

Friday, April 17, 2009

Fed Up With Autism Fighting

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

Monday, April 13, 2009

New Law Enforcement and Autism Training Video

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

Monday, March 30, 2009

Autism X 6 and Other Media Appearances

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

Sunday, March 15, 2009

Utah Lawmakers Say No to Autistic Kids

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

Tuesday, March 10, 2009

President Obama, Autism ‘Change’ I’m Looking For

See the YouTube video here

President Obama, congratulations on the new job -- hope all is going well so far. I hope and pray that the ‘change’ you want to achieve can be realized, especially regarding, Autism. I know who you are; let me introduce myself. My name is John Kirton and my wife, Robin, and I are the parents of six Autistic children. Yes, that’s right… six children on the Autism Spectrum.

Last year we were in People Magazine, Good Morning America, Inside Edition and Larry King Live. The documentary about our family, Autism x 6, first aired on the Discovery Health channel in October 2008. And was on again this past week. Not quite the media attention you’ve received but we are still working on that. You may ask, what are our goals? To increase the awareness, acceptance and services for people and families affected by Autism.

Let me get to my main point for sending you this message. Last year during the campaign, you said you would appoint an ‘Autism Czar’ to deal proactively with Autism. Mr. President, as a Dad of 6 Autistic children, I’m asking you to please appoint a qualified coordinator—NOW!

What are some of the qualifications that I and most parents of Autistic children are looking for? We need someone who truly, TRULY understands Autism. Not, an academic. Someone who understands the ‘real world’ of Autism. He should be a father of Autistic children, with at least a couple of children on the spectrum. Why is that so important? He needs to have firsthand knowledge to understand parents and their struggle with the emotions and finances of Autism.

When Congress passed the Combating Autism Act they recommended the establishment of an Autism Advisory Board made up of scientists, clinicians, and advocates. Now, it may be all well and good to have an ‘advisory board’ IF Autism was not a National Health Emergency, which it is. There is WAY too much talk and thinking about doing something about Autism. The time for action in NOW — Mr. President!

The Autism Czar position must not be a ‘paper tiger’ this tiger MUST have teeth, BIG teeth – that carries the weight of the President behind it. Funding must not be only, allocated, but available immediately. If we don’t spend the pennies it will take TODAY, it will cost many, many dollars in the future.

Across this nation, State legislators are working on insurance mandates, that aren’t getting out of committees or are watered down. This is not helping families of Autism. We need someone, like you Mr. President, to care about us and our children.

Imagine for a moment that your daughter, Natasha, who is almost the same age as my Sarah, has Autism. Natasha wears diapers, she spends much of her waking hours tearing the sheet rock paper off of the walls in her bedroom. Natasha is only able to talk with guttural sounding words, such a MAAA for Mom or DAAA for Daddy. Many of the times you talk to her, Natasha stares off into space like she doesn’t hear a word you are saying. You worry about her future. Will Natasha be able to carry on a conversation with you one day? Will she fall in love, can she? Will Natasha get married? What will her life by like? Can you imagine this for Natasha? I don’t need to imagine this about my Sarah. This IS her life and I DO, indeed, worry about her future life.

Like the ‘war on terror’ and the ‘war on drugs’, we need a “War on Autism”. Someone with military experience may be a plus.

Some want to discover what causes Autism, however maintaining a focus on the WHY of Autism may cause us to lose sight of what Autistic persons and their families have concerns about as well, like housing, education, employment, quality of life issues and long-term support.


The Autism Czar or coordinator must understand and work on a wide variety of issues and concerns within the Autism community. The following, not in any peculiar order, needs to be on his ‘short’ list.
• Have an Autism Czar for each state
• Each state needs an clearinghouse of information and services
• Dr. training is needed to help them recognize Autism
• Mandating that insurance companies cover Autism treatments
• Overhauling the IDEA program to insure that Individualized Education Plans are actually tailored to the students' particular learning needs, not to the schools needs, beliefs or budget constraints.
• Increase the scope of the IEP to add behavior training and nutritional needs
• Maintain a blog that accepts comments from the public
• Lets expand the availability of services that help Autistic children, such as ABA
• And let funding for research focus on finding more of what will help, not necessarily what caused the Autism
• Many parents believe that they are not getting straight answers on Autism from the CDC, let’s check into that
• Insure that all areas of Autism’s perspectives are addressed, such as
• Biomedical research on causes, treatments, and cures
• Disability services
• Accessibility
• Community inclusion
• Education and therapy for self improvement
• And public education for autism acceptance
• Create a coordinated effort for research to prevent duplication or wasting of funds
• Let’s loosen up SSI requirements to include those diagnosed with milder forms of Autism
•And also include SSI for families that (quote) make too much, when you have child with Autism money dries up VERY quickly
• This list just the beginning, the Autism Czar will find a lot more that needs to be addressed

Let these services, treatments and accommodations be available to all Americans, but not be mandatory. If a person with Autism does not want to (quote) be fixed, that needs to be their choice. Personal and parental choice MUST be honored and maintained.

It’s been said that when you see one person with Autism, you’ve seen ONE person with Autism. So again the Czar must have firsthand knowledge of the ranges of Autism in individuals. That is all I have to say for now, however I’d be very happy to meet with you or your staff to discuss in detail some of the points that I’ve brought up.

Thank you for your time and concern, Mr. President, we pray every night that you will help us, and the Autism community. Thank you.

Wednesday, March 4, 2009

Autism Opinions and Noses, Everybody Has One

Now it's Schizophrenia. The bad thing about research is for every 'study' that supports one set of views, there are three others that support an opposite conclusion. Autism? It's the water, bad parenting, vaccinations, genetics, heavy metals, pollution, preservatives, etc.. etc., etc...

As the Dad of six children with Autism I'm more concerned with research that can help the Autistic person to have a more full life. Research to uncover the best in education, social training, nutrition and treatments. Some funding spent on 'why' is acceptable, but the bulk needs to be addressing the here and now and plan for the future.

Funding for Autism research is good, funding to help with day to day living, is better.

Autism is a spectrum disorder, caused by a spectrum of reasons, needing a spectrum of treatments and a spectrum of funding. (Spectrum: A broad sequence or range of related qualities, ideas, or activities).

Our country must get moving to discover what can be done improve this situation. If every parent of Autism will be an advocate we can make a HUGE difference for our children. So make calls, write, search and read. Do what you can when you can. We are all in this together and we need each one of us.

Thursday, February 26, 2009

New Autism x 6 Dates and a Podcast

Our documentary, "Autism x 6", is back after a two month break. It will be showing on the Discover Health channel the following times: Mar 04, 8:00 pm, Mar 04, 11:00 pm, Mar 07, 1:00 pm (all times are EST).

Also I've been interviewed by the Autism Hangout. My podcast is here

Enjoy some ramblings and blather from a Dad with 6 Autistic children.

Thursday, February 19, 2009

Parents of Autism - Keep and Protect Your Children

When I read this article my blood reached the boiling level very quickly. If you haven't read it yet in some of our previous blogs, our children were removed from our home for 2 weeks by the state of Utah. Read this and make sure you get involved to protect your rights... Dad


Giving the State a Grasp on Your Kids

Part II of an in-depth look at Article 18 of the UN Convention on the Rights of the Child

When Kevin and Peggy Lewis volunteered their child for special education services, they never dreamed they would need a lawyer if they wanted to change their minds.

After their son developed several learning issues, including an inability to focus in class and difficulty processing and understanding oral and written communication, the Lewis's turned to the Cohasset Middle School in Massachusetts for help.1 But after a year in the school's special education program, their son was not improving academically, and felt harassed by school officials who were closely monitoring and reporting on his behavior - everything from chewing gum in class to forgetting his pencil.2

Initially, the Lewis's requested that the school pay for private tutoring, but as their relationship with the administration continued to decline, the exasperated parents finally decided to withdraw their son from the school's program and to pay for private tutoring out of their own pockets.3

Apparently, that option wasn't good enough for the school.

In December 2007, Cohasset hauled Kevin and Peggy into court, claiming that the parents were interfering with their son's "constitutional right to a free and appropriate education."4

After a day-and-a-half of argument, the judge sided with the school in an unwritten opinion.5

"This is truly devastating to all parents who have children on an IEP," Peggy said, referring to the individual education plans for special education students. "What it means in fact when you sign an IEP for your child, you sign away your parental rights. . . . Now Cohasset has their grasp on my kid."6

"Help" for Parents

At first glance, it seems odd that a school would take parents to court to compel them to accept state services. After all, as observers of the case commented, schools usually objects when parents demand more aid for their children, not when the parents try to withdraw their child from the program.7

But according to the UN Convention on the Rights of the Child ,once parents have asked the state for assistance in raising their children, the state has both the responsibility and the authority to see the job through - even if the parents no longer support the state's solution.

In addition to imposing legally-enforceable "responsibilities" on parents, Article 18 of the Convention also requires states to "render appropriate assistance to parents and legal guardians in the performance of their child-rearing responsibilities," and to establish "institutions, facilities and services for the care of children."8

At first glance, the offer of "assistance" to parents may appear harmless, and even generous, but appearances are often deceiving. While the government may claim to offer services to parents on a purely "voluntary" basis, parents soon discover that government "assistance" isn't always free.

When "voluntary" doesn't mean "voluntary"

For examples of this dangerous trend, one need look no further than the nation of Sweden, the first western nation to ratify the Convention.

In addition to mandatory sex-education, free child care for working parents, and a national ban on corporal punishment, Sweden's local municipalities are also required by law to offer parents a broad array of "voluntary" services that promote "the favourable development of children and young persons."9 Unfortunately, according to Swedish attorney and activist Ruby Harrold-Claesson, voluntary care "in no way is voluntary since the social workers threaten the parents to either give up their child voluntarily or the child will be taken into compulsory care."10

If the state determines at a later date that the "voluntary" services are not helping, the municipality has both the responsibility and the authority to physically "take a child into care and place him in a foster home, a children's home or another suitable institution."11 According to Harrold-Claesson, since the emergence of such programs, "children are being taken from their parents on a more routine basis."12

Unfortunately, these disturbing trends are not confined to Sweden. Even here in the United States, "voluntary" services for parents are often the first step toward state control of families.

Holding Children Hostage

As a young mother of three, "Katianne H." faced tremendous difficulties in making ends meet.13 Although she was never unemployed, Katianne had difficulty putting her job ahead of the needs of her young family. So when her three-month-old son Xavier developed severe allergies to milk and soy protein, her pediatrician recommended that she relieve some of the pressure placed upon her by requesting that her son be placed in "temporary out-of-home care."14 Thinking such a placement was truly "voluntary," Katianne agreed.

Within a few months, Xavier was weaned from the feeding tube to a bottle, but when Katianne sought to bring him home, the state refused.

It would take more than two-and-a-half years - and a decision from the Nebraska Supreme Court - before Katianne would win her baby boy back.15

In a unanimous ruling, the court said the child should have been returned to his mother as soon as his medical condition was resolved. Instead, state authorities drew up a detailed plan requiring the mother to maintain steady employment, attend therapy and parenting classes, pay her bills on time, keep her house clean, improve her time management, and be cooperative with social workers. When she failed to fully comply with all these obligations within fifteen months, her parental rights were terminated.16

The Court condemned the state for keeping Xavier "out of the home once the reasons for his removal had been resolved," and warned that a child should never be "held hostage to compel a parent's compliance with a case plan" when the child could safely be returned home.17

A familiar pattern

According to studies, scholars, lawyers, and advocates, voluntary placement in the United States - like "voluntary" placement in Sweden - is often the first step toward the state getting a grasp on children. Here are just a few examples from within our own borders:





· A 1994 study in New Jersey found that "parents often report signing placement agreements under the threat that court action against them will be taken if they do not sign," particularly parents who have "language or other barriers making it difficult or impossible for them to read and understand the agreement they were signing."18 There are also no "clear legal standards to protect a family once it has entered the system," even if it enters voluntarily: "existing legislation grants judges and caseworkers virtually unrestricted dispositional authority."19

· In 1998, Melville D. Miller, President and General Counsel of Legal Services of New Jersey, warned that when parents sign voluntary placement agreements, parents give the state "custody of their children without any decision by the court that they have abused or neglected them."20 In addition, voluntary placement often waives a family's opportunity for free legal representation in court, leaving families - particularly poor families - with "no assistance in advocating for what they need" when disputes with the state arise.21

· In 1999, Dr. Frank J. Dyer, author and member of the American Board of Professional Psychology, warned that parents can be "intimidated into "voluntarily" signing placement agreements out of a fear that they will lose their children," and that in his professional counseling experience, birth parents frequently complain that "if they had known from the outset that the document that they were signing for temporary placement of their children into foster care gave the state such enormous power over them, they would have refused to sign and would have sought to resist the placement legally."22

· The Child Welfare League of America, in its 2004 Family's Guide to the Child Welfare System, reassures parents that the state "do[es] not have to pursue termination of parental rights," as long as the state feels that "there is a compelling reason why terminating parental rights would not be in the best interest of the child."23 If parents and social workers disagree about the fate of a child in "voluntary placement," the CWLA simply states that "if you decide to bring your child home, and the agency believes that this would interfere with your child's safety, it has the right to ask the court to intervene. You also have the right to explain to the court why your child's safety would not be in jeopardy if he came home."24

· The National Crittenton Foundation, in a web booklet published for young, expectant mothers who are currently in the foster care system, warns in large, bold print that by signing a voluntary placement agreement, "you will most likely lose all custody of your baby, even if you want to regain custody of your baby after you turn 18."25

Never Too Late

If one can learn anything from the stories of the Lewises, Katianne, and the plight of Swedish parents, it is that the government wields incredible power over parents who have "voluntarily" accepted its aid when caring for their children. These parents are often poor, struggling, and searching for the means to keep their families together, but instead of helping them, the open hand of the state can easily become a clenched fist, either bullying parents into submission or forcibly taking their children from them.

Thankfully, it is not too late to protect children and their families by protecting the fundamental right of parents to raise their children, and to reject government programs that are unneeded or unwanted. The state should only interfere with the family for the most compelling reasons - not because loving parents were misled about the true nature of "voluntary" care.

Please consider sending this message to your friends and urging them to sign the Petition to Protect Parental Rights.

This article was written for ParentalRights.org by Peter Kamakawiwoole, Jan. 29, 2009.

The article with links is here

Tuesday, February 10, 2009

Your Aspergers Neighbor's Guide to Social Graces

This is a copy of my response to an email I received from someone who sought advice on dealing with his new neighbor who is an adult with Aspergers syndrome because this new neighbor is showing up at his door and talking about the same stuff way too often...

"I totally understand what you are starting to experience. I have an adult autistic friend who says the SAME things to me over and over again, and every time I see him. Another one calls me about ten times a day, ahh!

This is very common behavior with Asperger's syndrome. For, these folks have a hard time socially. They have difficulty with social graces because they have a hard time catching on and understanding what the rest of us consider to be socially appropriate. They are often very literal in their understanding and often don't understand, perceive and empathize with others feelings and points of view. They can be or seem self-absorbed and be emotionally immature at times or often, and dependent also, especially when someone is kind to them. My opinion is that this new neighbor that keeps showing up at your door wants to be friends, friendly or neighborly with you. And, he doesn't realize he's becoming a pest. I've found that the best way to handle such an abundance of friendliness is polite honesty. For example, I told my phone friend I can only talk to him about once a week. So, I pick up the phone only about once a week. I also politely remind him that I have six kids, a messy house, etc to take care of. He takes it very well. As for my friend that repeats, I half tune him out, and say an occasional "Yeah", "Okay" and "Uh huh". And, when he kept flaking out when we made appointments at the barber for him, I finally said that if he doesn't show up next time, then he's not getting a haircut ever again--so he showed up next time. I haven't had an autistic friend show up at my door at all times of the day and night before, but we have had a neighbor boy show up about that often. We told him not to come over on Sundays, and we set a few rules that he needs to follow or he goes home.

Basically, your neighbor is socially and emotionally innocent, like a child. Just be patient, kind, honest and straight forward. He may very well not understand, get confused and get mixed messages if you don't tell him in plain terms when are good times to visit, including specific hours and days, how often, etc. But also keep it short. I think that a good idea to do the next time he shows up at your door, ask him what he wants, does he want to come in and visit, is he lonely, bored, want to be your friend, etc. Asking him what is up and what he wants every time he comes would be good. And, if he shows up more often than you tell him he can, at the wrong times, or when you don't feel like visiting, the first few times, tell him that he's coming over too often, at the wrong time, that you're busy or it's not a good time. He will probably comply with your request. However, if he still doesn't get it, I advise you to close the curtains and don't answer the door. Like the rest of us, autistic folks have different personalities and it's possible he may get hurt, offended, angry, etc. But if so, don't worry, he'll get over it. And, you'll know he'll be over it when he starts showing up again, heh heh... My repeating friend sometimes doesn't call me for months because he got upset at something usually trivial I said or done, then calls again when he's gotten over it--and wants my help again. I know of another autistic adult who gets so easily offended at stuff--usually minor again-- that he doesn't call his family for years at a time.

...Thank you for seeking help about this situation. I'm glad you wrote me, you obviously have a lot of care and concern about others, and asking for advice in dealing with your neighbor shows this. And, I also applaud you for taking steps to be polite to your neighbor while at the same time, protecting yourself so that you don't get emotionally drained...


Sincerely,

Robin Kirton

(Mom)

Saturday, February 7, 2009

Be an Autism Advocate

Making calls and emails are good starts. Do a search on the web page of your closest major newspaper and see what kind of Autism stories they've done. If they haven't done anything in the last six months... call them.

How we got started: We found out all 6 were Autistic in fall of 2006. While watching "Extreme Home Makeover" in Feb 2007 they said the family had the most documented Autistic children in one family... five. Robin and I looked at each other, "Guess we have the most". I emailed the local ABC station the next morning that we have 6 ASD kids and got an email from a reporter back right away. They were doing a story that night and wanted some footage on our family. We were on the news that night.

A month or so later I called our two major newspapers. One was more excited then the other to do our story. An interview and photos later and we were on the front page of the Sunday paper. (Check it out and add a comment to their website, that can insure that it stays available) That was June 2007.

Because of that newspaper article we were contacted by Readers Digest, People Magazine and Figure 8 Films (fro Discovery Health). People came in July for the interview, the photographer came in December. (long story). The film crew first came in Dec 2007 for the next 6 months. Each visit was 2-4 days.

The People magazine article came out in Feb 2008 and the interviews with Good Morning America, Inside Edition and Larry King soon followed. We had also been contacted by the Helen DeGeneres show and Oprah. Nothing has come of those as of yet. "Home Makeover" did contact us and wanted us to apply, but you need to own your home or have property they can build on. We rent and have no land.

Between the beginning and now I've made calls (lots) and emails to many politicians and various groups and individuals (the rich and famous). You wouldn't believe how many people who SAY they support Autism have never responded. I even sent Jenny McCarthy one of our t-shirts and never heard back.

Yes, the hours are long and there are many disappointments in trying to increase Autism awareness. But, as I tell many people, Autism IS my life. I figure it's my job and "calling" in life to do all I can. I've felt dumb standing around an event where I know nobody and try to start conversations. Then try to bring the conversation around to Autism. I've actually created a Autism business card for myself and Robin.

But, to do nothing... I feel is just not acceptable. Do something, anything... it will make a difference. If every parent will be an advocate we can make a HUGE difference for our children. So make calls, write, search and read. Do what you can when you can. We are all in this together and we need each one of us.

Dad

Tuesday, February 3, 2009

Help Me Get a Meeting with President Obama

President Obama ran on a campaign of change. Recently I did a lot of soul searching as to what I need to do to help the Autism community this year. What came to me is that I need to bring some MAJOR recognition to Autism. To do that I felt a meeting with our new President between now and Autism awareness month (April) is needed.

We need changes to the direction of the funding Autism is currently receiving. What I'm hoping that you can help me with is this:

1) Sent me all the stats you have, local especially and nationally too is fine. I need major talking points. I will be posting to our blog to kick this off.
2) If you known someone who knows someone who knows someone, that can get me an appointment... help.
3) If YOU could talk to the President about Autism what would you say?
4) Anything else you think this meeting needs to be or how to make it happen.

Thanks,
Dad

Monday, February 2, 2009

Poll Responses

I was really glad to see the religious poll do so well. Remember, there is no way that I know who fills out a poll. It's completely anonymous. So, everyone please answer each poll. Thanks!

Dad

Friday, January 30, 2009

Real Mothers

A friend send this to me recently, thought you would enjoy it as well:

MOTHERS

Real Mothers don't eat quiche;
They don't have time to make it.

Real Mothers know that their kitchen utensils
Are probably in the sandbox.

Real Mothers often have sticky floors,
Filthy ovens and happy kids.

Real Mothers know that dried play dough
Doesn't come out of carpets.

Real Mothers don't want to know what
The vacuum just sucked up.

Real Mothers sometimes ask 'Why me?'
And get their answer when a little
Voice says, 'Because I love you best..'

Real Mothers know that a child's growth
is not measured by height or years or grade...
It is marked by the progression of Mommy to Mom to Mother...

The Images of Mother

4 YEARS OF AGE - My Mommy can do anything!

8 YEARS OF AGE - My Mom knows a lot! A whole lot!

12 YEARS OF AGE - My Mother doesn't really know quite everything.

14 YEARS OF AGE - Naturally, Mother doesn't know that, either.

16 YEARS OF AGE - Mother? She's hopelessly old-fashioned.

18 YEARS OF AGE - That old woman? She's way out of date!

25 YEARS OF AGE - Well, she might know a little bit about it!

35 YEARS OF AGE - Before we decide, let's get Mom's opinion.

45 YEAR S OF AGE - Wonder what Mom would have thought about it?

65 YEARS OF AGE - Wish I could talk it over with Mom.

The beauty of a woman is not in the clothes she wears, the figure that she carries, or the way she combs her hair.

The beauty of a woman must be seen from in her eyes,
Because that is the doorway to her heart,
The place where love resides.
The beauty of a woman is not in a facial mole,
but true beauty in a woman is reflected in her soul.
It is the caring that she lovingly gives, the passion that she
shows, and the beauty of a woman with passing years only grows!

Friday, January 23, 2009

Our BIG Autism Day

Yesterday we met with one of the social workers at Ammon and Mary's Autism school. They called the meeting to go over a STRESS survey. We were concerned and wanted to make sure we did not miss the appointment. We had run ins with social workers in the past. But all was well and we were told that we were doing a good job in spite of having our 6 ASD pumpkins. Whew!

That was at 9am. At 11am there was a press conference at our state capitol building. Another mom of Autism that we know, got a Senate sponsor for a bill to get insurance companies to cover Autism treatments. I went to offer my support and was able to get the reporter who did our GMA followup story at the local ABC channel to talk with us (click on Autism story).

During that time Robin stayed at the children's school to help Ammon's teacher who was short staffed. She caught a ride home on their bus. The coordinating of getting Bobby over to church for a special youth meeting. Calling the school for Emma and Nephi to meet me out front instead of walking home. Getting a call from the bus assistant for Sarah to have the bus bring her back to the school (they were in front of the house) so I could get her Emma and Nephi into the car and rush to the bus stop where Mom, Ammon and Mary were waiting to be picked up. Pant! Pant!

Later in the evening I left at 6:15pm to go to a speaking event with Temple Grandin at the Salt Lake City Library, about 25 minutes drive. But, I got there early enough to get a good seat. Afterwards she signed books. I gave her a copy of the People magazine with our article and a DVD of our Discovery Health documentary. She said she had not heard of our family yet. Dang, I've got to do a better marketing job! LOL



At 10:05pm I got a call from my 26 yr old son (first marriage) to ask what I was doing to be on the news that day.

Most days aren't this busy, but it's getting to be more and more each month.

Saturday, January 17, 2009

Autism Gospel, According to John

From a recent post at a group I belong to, it was asked about how neighbor kids and their parent relate to your Autistic child.

I said: it is very difficult to find parents and children that are accepting of an ASD child. We have discovered who our real friends and family are since getting our dx on the children in Oct 2006. We have everyone we know falling into one of 3 groups. Accept us, hate us or ignore us. The largest for our experience is, ignore us. Then hate us, and the smallest is accept us. Unfortunately a lot of family and friends are NOT in the accept us group.

But, like I said, you really find out about people when Autism comes into your life. It hurts for awhile, but we have made new friends and 'family' to replace the old. Find local groups to be a part of, learn from and develop friendships in groups like these and work on developing a thicker skin.

I feel that we, and all Autistic parents, were chosen by God to care for these special spirits he has entrusted us with. And where much is given, much is expected. We have children of light that must not be hidden, but should be placed on a hill for all to witness and enjoy. If ignorant and uncaring people cannot see that they are indeed special, and not in the typical 'special' label way, then that is their failing.

I really believe that the rise in Autism is part of the preparation for Christ's return. If someone cannot be accepting of a child or adult with a disability, then they can have no part in his kingdom. He must separate the wheat from the chaff, the good from the bad. We and our families are his servants doing some sifting.

Now, I'm not saying that I'm some saint or that I'm perfect. But, I do feel that we have been given a task and there may be some suffering, like the early Christians, for us to bear. If we stand strong, do not wilt and move forward with conviction we will be able to increase the acceptance and tolerance of people with Autism. "...when ye are in the service of your fellow beings ye are only in the service of your God."

I'll get down from the pulpit now; I hope that I have not offended anyone. I just feel very strongly about our roles as parents of Autistic children.

Dad

Thursday, January 8, 2009

Parents of Autism Helping Each Other

Hey parents, how's finances? Does one or both parents stay home to help with your Autistic child? Do you run a home business?

Well this blog's for you: http://autmart.blogspot.com/

I just put it together a few minutes ago. Had a brain storm this morning, water EVERYWHERE! Ha! Any way check it out and get involved

Now even though I got this idea, I can't do it all by myself. I need partners to help contribute and help out. Either email me: autism_bites@yahoo.com or twitter me: http://twitter.com/johnkirton

Dad

Saturday, January 3, 2009

Resolutions, Promises and a few Fibs

Well 2008 was certainly a banner year as far as media attention for the Kirton's of Utah. We know of only an additional documentary on the Discovery Health channel this January, as we've been told.

I have recently set up an account on Twitter (http://twitter.com/johnkirton), we've had our YouTube channel since April 2007, Facebook and MySpace as well. And we're joining many other various groups and social websites to get more of our presence out there.

My goal is to stay on top of all these outlets and make more of an impact on Autism awareness and acceptance. If I get into a few verbal tussles with ignorant or mean people along the way - so be it. I'll try to be as nice as possible, however when someone comes along with some 'out there' comments... well this Daddy will not roll over and play dead.

Dads are the protectors and providers. I take that role seriously and I hope to have other parents of Autistic children, especially the Dads, help in that cause. Lurking on websites/blogs and standing back in the shadows may be fine for NT parents. If we are to have support, services and other needed things for our children we need to be out front.

Your state and national reps should know who you are. This past year I've met with our city Mayor, the Governor and one of our Senators. I plan to do more. To have the time and finances to do all this, my new website: www.BillionsToGive.com will need to be successful, I feel it will be. I hope some readers here will be a part of those efforts, but that will be your choice.

But, however we choose to further the cause of Autism awareness, sitting back and watching someone else do it all--is not an option. In my opinion.

So what are the resolutions, promises and a few fibs? I resolve to do a better job on this blog and promise to do so. If I don't hit those goals? Well, that where the few fibs come in. :)


Dad