Autism x 6 - Give a Man a Fish or Teach him How to Fish

WARNING!! This will be a long blog. But, what I'm about to reveal comes from my heart and soul. This is my discovery of what I need to do. Something that I've thought and pondered over for many months. No funny quips, just serious stuff that matters to my core being.

The title above refers to the idea of giving someone something to satisfy an immediate need OR instead to teach that person how to take care of themselves from now on. The latter is what I want to talk about as it relates to the financial devastation faced by too many parent caregivers.

I desire to make a MAJOR difference in the lives of parents that have children with disabilities generally and Autism specifically. After reading this you may think I'm just a dreamer, but I hope I'm not the only one. I know that I cannot do this alone and I will need the help of many, many people. I have a vision, a quest... that is physical, financial and spiritual.

First the spiritual influences I've felt.

This is a hymn that we sang at church recently:

Savior, may I learn to love thee,
Walk the path that thou hast shown,
Pause to help and lift another,
Finding strength beyond my own.
Savior, may I learn to love thee—
Lord, I would follow thee.

Who am I to judge another
When I walk imperfectly?
In the quiet heart is hidden
Sorrow that the eye can’t see.
Who am I to judge another?
Lord, I would follow thee.

I would be my brother’s keeper;
I would learn the healer’s art.
To the wounded and the weary
I would show a gentle heart.
I would be my brother’s keeper—
Lord, I would follow thee.

Savior, may I love my brother
As I know thou lovest me,
Find in thee my strength, my beacon,
For thy servant I would be.
Savior, may I love my brother—
Lord, I would follow thee.

What this says to me is... my wife and I have been tremendously blessed by God, entrusted to care and provide for these special children he has sent us.

As I read through the verses, I find to be worthy of that trust I MUST pause and help others. Finding strength that is not from me.

I'm not perfect and so I have no cause to be a judge of others. I don't know their feelings. But I want to help, I know I can help. If only to ease another Autism parents hurt or despair would be enough. However, creating financial abundance in others lives can help in a huge way as well.

To serve God, to appreciate his love for me... I need to love and serve others. I would be my brother's keeper.

Then this scripture helped me to realize the direction and goals I should reach for.

"Verily I say, men should be anxiously engaged in a good cause, and do many things of their own free will, and bring to pass much righteousness;
For the power is in them, wherein they are agents unto themselves. And inasmuch as men do good they shall in nowise lose their reward."

This told me that... I need to be "anxiously engaged" or in other words, working my tail off in a "good cause". Because he says I DO have the power and can decide to do something about it.

Another area I discovered that dealt mainly with the financial aspects, came from the quote of a religious leader: “Without self-reliance one cannot exercise these innate desires to serve. How can we give if there is nothing there? Food for the hungry cannot come from empty shelves. Money to assist the needy cannot come from an empty purse. Support and understanding cannot come from the emotionally starved. Teaching cannot come from the unlearned. And most important of all, spiritual guidance cannot come from the spiritually weak.”

Oh boy, here are a lot of areas I need to work on in order to reach my goals. I must be self-reliant to serve. I can't have an empty shelf or purse. I need to make sure my head is on straight. I need to know more and be close to God.

Of course I realize I can't do this all in one day and I definitely will need the help of others. But when the "anxiously engaged" part is factored in I realize, there is no time like the present! I can't wait for change, I must make changes in ME for something to happen.

I recently responded to a request to apply to an action group that works with State leaders. This will give you additional information about my thought process. I came up with this answer as to why I wanted to join the group...

"I wish to insure that those who are least able to speak out for themselves are heard. I refer to the disabled. As the Dad of six children with the Autism Spectrum Disorder, I'm very aware of this need. I believe that the government cannot provide the needs, services or answers that parents and caregivers of the disabled look for. The need is great physically, emotionally and financially. I want to see a less restrictive government over the private sector that will allow for the creation of the financial means necessary.

Each state should have a clearing house of information and resources. It should allow for the framework to be established where individuals and private companies can work to provide the needs required. How can this work? What needs to happen?

I'm not sure.

I have ideas, but by working with the leaders of each state we will discover what works. By releasing the shackles of too much government intervention--it can be done. And it must be done and soon. The increasing numbers of our disabled, especially Autism, makes it prudent that action is needed now. And before this situation becomes to overwhelming for any of us to make a difference. I want to be a part of that solution."

So while I can work on my emotional and spiritual areas internally, I have to put the gears in motion and have others help me to accomplish the financial part. Why?

I believe that if parents of disabled children are looking for changes of services available, programs or facilities that will help. That's what we will be doing... just looking. Walking, talking, wishing, hoping or even just praying will not work. It's not going to happen without us actually getting up and DOING something about it!

We have to make it happen.

I AM talking about shooting for the stars here. I want to create a step by step method that will produce millions and millions of dollars for all who want to see the lives of their loved ones improve. AGAIN, we can't do this alone and someone else will not do it for us.

A model to follow that I've seen work is used by many in the Asian community. I once worked with a man that was buying the equipment he needed to get his business off the ground. He was from Vietnam and came to this country with nothing. He and other family members lived in a rented house at first. Four families in one home.

They had a system where each family received the surplus from the other families each year. The first year money was pooled to get the down payment to purchase a home for a family. Next year it was the second families turn and so on until each had a home. Then the same process was repeated for each head of household to start their own business. And since they were all doing better financially it wasn't taking a year between families anymore. They created the financially independence they needed.

Can we proud and independent Americans do the same? Sure we can, but will we?

If we continue to maintain an "I'll do it myself" or Lone Ranger" attitude. Or wait on the government. NOTHING will change. As for me, I'm an idea guy. Organizing, putting all the pieces together, etc. is not what I'm best at. This is where others can and need to get involved.

It is my wish that none of the families out there that have a disabled family member to take care of, never have to get another SSI check, medicaid or food stamps. Where they never have to worry about being on a waiting list for funding or services. To have all the money needed to provide for insurance, treatments, respite or care.

Once we have created the necessary finances we need to have an automatic system that continues to produce money so we can get out of the "having a job" situation. I want my 'job' to be with my family.

Let's create a Master Mind Group

So who's with me? Are you an organizing genius that can coordinate this effort? Do you know of legitimate ways we can create money? I personally am hiring experienced sales people nationwide. And while we're doing that lets think of what to call ourselves, see the poll above and right. Let's pool our efforts like the Vietnamese family's example above and teach ourselves How to Fish.

Comments?

John Kirton

Autism x 6 - How It All Started

This is the story in our local newspaper that started us on the road to "fame".


Autism x 6: Family's kids all have the disorder
By Angie Welling
Deseret Morning News
Published: Sunday, June 3, 2007 12:21 a.m. MDT

MURRAY — One minute they're sitting, the next they're gone. Off the couch and onto the rocking chair, into the corner of the room, anywhere but where they were.

The children move quickly, often too fast for their parents — or even the camera's lens — to catch them.

This speed, this constant flash of children, is why the Kirton house looks like it does: a veritable maze of locked doors and makeshift barricades that are designed to keep kids in, or out, of certain areas. It is why the Kirton parents can keep talking through just about anything, hardly raising their voices while 8-year-old Nephi has yet another "meltdown" as 5-year-old Sarah, aka "Tigger," bounces madly on the couch beside them.

After all, if John and Robin Kirton focused too much on these incidents, who would catch 3-year-old Ammon, lovingly referred to as "The Destroyer," before his little hand finds its way into his dirty diaper? And where, during all of this, are the older children, Bobby and Emma, or the baby, Mary?

Life with six children is tough. Life with six children with autism practically defies description.

The stress has landed the family in juvenile court, following an offhand comment from a frustrated mother, and cost John Kirton his job and the family's medical insurance. But it has also helped the Kirtons — who now market their own "Autism Bites" T-shirts — recognize the healing power of laughter.

"We use sarcastic humor to diffuse our stress," Robin Kirton said with a smile. Added husband John: "If we didn't laugh, we'd cry."

Dubious distinction

In Utah, 1 in every 133 children has autism, according to a recent study that placed Utah's rate about 12 percent higher than the national average. University of Utah researchers found that the rate is even higher for boys, at 1 in 79.

Even with such high state rates, having six children from the same family on the autism spectrum is extremely rare, said Judith Pinborough Zimmerman, Ph.D., assistant professor in the department of psychiatry at the U.

"What tends to happen is sometimes families, if they have one child with autism, they tend to stop having other children," she said. "Geneticists refer to it as stoppage."

Autism is characterized by impaired social, communicative and behavioral development. It is a spectrum disorder, with symptoms and characteristics ranging from mild to severe. Common characteristics include resistance to change, a difficulty expressing needs, tantrums, difficulty socializing with others, an obsessive attachment to objects, over- or under-sensitivity to pain and a preference for being alone. There is no medical cure for autism.

Autism cannot be detected by medical tests; diagnoses are based primarily on observation. Its causes are unknown, though research indicates that genetics can be a factor, while many believe that environmental factors and even childhood vaccines may be to blame.

The Kirtons note all of these factors when questioned about the cause of their children's autism. They also point to John's age as a possible factor, as he was over 40 when all of his children were born. (Bobby, the oldest boy, is Robin Kirton's son from her first marriage.)

The Kirton's own research, through Internet searches, online discussion groups and local autism conferences, has led the family to believe it may lead the nation in the number of children with autism. It's a dubious distinction to John and Robin Kirton, but they also see it as an opportunity to educate others about the disorder and, maybe one day, start their own nonprofit organization to raise money for other families with autistic children.

This week, researchers from the Utah Registry of Autism and Developmental Disabilities, a joint project between the state health department and the U. medical school's department of psychiatry, will visit the family's home to draw blood from each family member as part of an ongoing study into the role of genetics in autism.

'Dangerous thoughts'

John and Robin Kirton bristle when asked the all-too-familiar question about their family: Why didn't they, as many parents do, stop having children?

Depending on their mood, the Kirtons respond with humor, frustration or defensiveness. Regardless, the answer remains the same — all of the Kirton children were already born when Bobby's fifth-grade teacher told John and Robin she suspected the boy suffered from Asperger's syndrome, a mild form of autism.

According to the Utah Registry of Autism and Developmental Disabilities, signs of autism-spectrum disorders are often the most obvious in 3 and 4 year olds, while more mild forms are often not diagnosed until later in childhood.

After observation tests confirmed Bobby, now 13, was a high-functioning autistic, the Kirtons began to become concerned about their other children. Sarah's diagnosis came next, then Ammon's.

"That's about when my grieving period started," John Kirton said.

The Kirtons sought early intervention services for the two children, each considered "classic autistic." Falling at the severe end of the spectrum, each child is still in diapers and has limited verbal skills. It was one of those early intervention workers, from a local nonprofit organization that contracts with the Utah Department of Health, to whom Robin Kirton made the comment last fall about the family's Murray home being so dirty that some days she was tempted to "burn the whole thing down and start over."

The remark was never meant seriously, said Robin Kirton. It was simply one of those "dark and dangerous and scary thoughts that crosses the minds of all parents but you don't do."

Still, within an hour, workers from the state Division of Child and Family Services were at the front door. One week later, all six children were at the Christmas Box House, where they lived for two weeks while their mother's mental state was evaluated.

"I feel like my character was, at first, so smeared," Robin said. "At the same time, I know they were doing their job. I've just had to prove myself and earn our freedom back.

"It really helped humble us. It made us appreciate the children more."

It also led to an official diagnosis for the other three Kirton children after the juvenile court judge ordered that they be tested for autism, as well. Last November, the news finally came: Emma, 9, and Nephi also have Asperger's syndrome and 2-year-old Mary has PDD-NOS, which stands for "pervasive developmental disorder — not otherwise specified."

The news, Robin said, "was hard to take." However, the diagnoses also helped the family in certain ways, she said. "For one, it helped make sense of all the stress."

'Armageddon level'

The Kirtons will be back in court late next month for what they hope will be their final court hearing. "The thing with the thing," as John Kirton refers to the state intervention, is finally winding down.

The pair has made necessary changes to their home, and John Kirton has found work driving a truck for a local excavation company. The owner is sympathetic to the family's situation and the fact that John misses at least one day of work every couple of weeks to tend to his family — the reason he lost his previous job. And although John and Robin are without health insurance, three of the children receive Medicaid and the other three are on federal SSI (supplemental security income) through Social Security.

Meantime, the couple, who celebrated their 11th wedding anniversary in late May, will continue to cope with their situation in their own ways. John blogs on their Web site autismbitestheblog.blogspot.com/ about his family and rents World War II movies because, "even though I know how it ends, I like to see the fighting and how they got there." Robin, on the other hand, steals whatever free time she can to play her favorite computer game, Snood.

Recently, while reaching the highest level in the puzzle game, Robin reached an important conclusion about her life.

"I realized that the lower levels aren't fun now, because I'm good at it," Robin Kirton said. "If I had, say, six normal kids or less kids that were normal, that would be easy for me. God knew I was up for the challenge, so he made it.

"Six autistic kids is my Armageddon level."

Sorry for Being Gone

Well, I'd imagine that we've lost just about every follower that we had for this blog by now. But, I quess that it will give me a place where I can write and not worry too much about what I say.

The car contest was a BIG flop. So much for 6 weeks of work to create the video. Some people were very helpful watching it a bunch, but that was about it... a few people. Got a lesson in knowing how many people were able to help us, I thought I was more known about or something. Boo Hoo...LOL!

I and Robin have been hanging out a LOT more on Facebook the past month. I've also been doing a lot of Twittering and on the business site: LinkedIn.

I've decided that I will leave this blog just for family stuff only, and of course when I can get to it. I've been very busy launching my business expansion. Here are some links to find the other places I hang out. Be my friend there if you like.

Facebook
Twitter
LinkedIn
YouTube

Dad

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

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

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

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