Friday, August 24, 2007

Our Newspaper Story... revisited

I know we've included the link to our story in previous posts. But, in case you missed that and I'm also going to comment inside the story of parts that were not quite correct. Here it is:

Autism x 6: Family's kids all have the disorder By Angie Welling Deseret Morning News Published: 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 (not really, a bit of journalistic enthusiasm I think) — 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 (and HUGE messes) 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, (you gotta do what you gotta do) 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? (as long as they're in the house and we don't smell smoke...things are fine)

Life with six children is tough. Life with six children with autism practically defies description. (a great description of our life!)

The stress has landed the family in juvenile court, following an offhand comment from a frustrated mother, and cost John Kirton his job (my stress, not Mom's comments) and the family's medical insurance. But it has also helped (a bit over a $200 isn't much yet) 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. (for us it's 50/50, 3 boys and 3 girls)

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. (We think it may be a combination of both in our case)

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 (we mentioned a study done in Israel of over 40 year old fathers of Autistic children) 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. (still #1 as far as we know) 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. (we very much want to do this to help insure no one else has to you through the courts like we did. And for the financial shortfall most Autistic parents experience. Anyone like to help and/or join us?)

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 (not official) came next, then Ammon's. (official)

"That's about when my grieving period started," John Kirton said. (couldn't concentrate at work, felt like I was in a constant haze for 6-8 months)

The Kirtons sought early intervention services for the two children, (Ammon and Sarah) 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 (messy) 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. (called in by the helpful case worker) 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. (it was, we're all done, YEAH!) "The thing with the thing," (huh? don't remember saying that one) 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. (not really, my VP and boss said it sounded like I needed to take care of the home life... see ya, a lay off. But, he said he didn't say it that way, that I quit, avoiding an unemployment claim) 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. (the 3 on SSI are the ones getting medicaid, the other 3 and us have no insurance)

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/ (like now) 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." (a better version: "even though I know how it ends, I like to see the fighting and how we won.") 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."

End of comments

Dad

12 comments:

mom to max said...

wow! i would definitely love to link to you and read more of your story. i just have one child on the spectrum....i am sitting here trying to imagine six. many kudos to you and your family!

www.theautismexpress.com

mcewen said...

Thanks for the perspective. Best wishes and have a great weekend.

Joseph said...

Yeah, genetics might be one possible factor in your case, who knows. /sarcasm

John said...

I'm the Aspie son of an Aspie mother who was the daughter of an Aspie mother.

I'm also the father of five Aspie kids, from 37 to 18. All have differing manifestations, and all are mild, thank heaven.

The youngest, a girl, was a surviving twin, so chances are, had the other twin survived (a boy), we'd have equalled your dubious record.

We're in Australia, though, not the USA.

In an interesting coincidence (I assume it's coincidence), we're also LDS.

I'd love to share experiences and ideas if you're interested.

John Counsel
mailto:john@counselfamily.org

Caroline Rodgers said...

Thank you for your honest description of a challenging life, raising the children you love despite their special needs. Although current theories on what causes autism point to genetics, there is evidence that prenatal ultrasound may be a significant factor. I am the author of "Questions about Prenatal Ultrasound and the Alarming Increase in Autism" available online at: midwiferytoday.com/articles/ultrasoundrodgers.asp. This story is not based on anecdotal information but draws from leading scientific journals and government reports.

Dave said...

Your courage and your good humor are amazing. I heard of you through this newspaper story (I'm the guy who wrote Snood, so it showed up on a search I have running), and it was a real inspiration. We've been foster parents for eight months now, with more kids (and more craziness) in the house than usual, but it's not even in your league, I bet. Good luck with everything.

-- Dave Dobson

Caroline Rodgers said...

I would be very interested in responses from parents of autistic children to my previous post regarding the role prenatal ultrasound may play in causing autism. Quite simply, the little-known thermal effects of prenatal ultrasound may interrupt neuronal migration, the process during which the baby's brain is actually "wired." For those who may wish to reply privately, my email address is: caroline.rodgers@hotmail.com

kristina said...

Saw that you are on ABC-----thanks for sharing about your family!

donna mason said...

Hi, I don't quite understand why, if your children are diagnosed with Autism, that they are all unable to get SSI. And that should automatically come with medicaid. Do you have a DD case manager?
Donna
donnaleemason@yahoo.com
Also, if your child is on medicaid, get a prescription from your physician and medicaid will pay for diapers.
It may take a month for your pharmacy to organise it but it is definitely worth it. Saves an awful lot of money.
Donna

mary pod said...

I am the mother of four high functioning but definitely autistic children, (as evaluated by the University of Washington Family Study of Autism). All had speech and social difficulties. None are non-verbal. When I realized all four had this problem I understood that it could not have occurred by chance alone, nor by genes alone, because I am by training an engineer and a statistician and my husband is a Phd in Electrical Engineering. I have 60 first cousins, 6 of us were born in one year with not a single one of us having a neurological condition, like my children's. None of my ancestors nor my husbands had a problem like our children's. I contacted an old friend, a biostatistician, who had participated in vaccine studies himself, at the public health department of Yale University. He readily assured me that it is commonly known that the vaccines themselves are the cause of autism. No study has ever been performed which compared vaccinated with non-vaccinated individuals. Any metaanalyses or studies absent a nonvaccinated control group are incapable of validating the hypotheis that the vaccines had no effect on the rate of autism.

Dena Page, M.Ed., CBA said...

One intervention that you can do that doesn't need to cost anything extra is a gluten-free, casein-free diet. Gluten and casein have been found to be major culprits in the body and brain of children with autism. Perhaps even more interesting, gluten has been found to cause fibromyalgia. Thus, this one intervention can help lessen the symptoms of your children's autisms (I'm not sure if that's a word but if it wasn't, it is now!) AND also lessen the pain and exhaustion Robin copes with. The trick to it is not to replace regular food with expensive alternatives; just revamp your food choices to exclude bread, pasta, and milk. Water's cheaper than milk anyway! There are other dietary changes that can help, including taking bananas, apples, and grapes out of the diet. If there's anything I can do to help, feel free to email me at DenaPage@gmail.com. Good luck!

Kim said...

I can't imagine 6 kids with autism. I have 5 children with my 4th child experiencing regressive autism symptoms between 2 and 2.5years. She couldn't feel pain or ticklishness, lost receptive and expressive language, tripped everywhere, had violent temper tantrums, lost eye contact, etc. I took away dairy "cold turkey" causing the opiate withdrawal effect as she was totally addicted to casein. Some of symptoms above started to reverse in as little as 5-14 days off of all casein! Fast forward a little over 2 years later and the DAN! biomedical program including chelation for heavy metal and the GFCF diet (plus minimal soy and good whole, unprocessed foods)...she now has an Asperger's diagnosis & doing well. I believe her autism is environmental since she was my only child to have a MMR and varicella the same day (even her sister who is 18 months younger & same doctor didn't have them on the same day). But, I was also exposed to a prenatal flu shot (and extra ultrasounds with her after this flu shot since the amniotic fluid went low then excessive during the last trimester), a flu shot while nursing her when she was 8 months and she had a flu shot at 20 months. At first, I believed in genetics only and didn't get her biomedical treatment. My daughter wasn't teachable until biomedical treatment since she was HYPER but now she can wait for her turn patiently, not many sensory issues anymore and she can sit through 30 minute lessons. I hope your church or community will consider helping your family with alternate treatments while your kids are young. My prayers are with you all.