Autism Stress

A friend sent this story and thoughtful words. I thought that how we all handle the Autism thing can be related to what is said here:

A lecturer, when explaining stress management to an audience, raised a glass of water and asked, 'How heavy is this glass of water?' Answers called out ranged from 20g to 500g.

The lecturer replied, 'The absolute weight doesn't matter It depends on how long you try to hold it. 'If I hold it for a minute, that's not a problem.

If I hold it for an hour, I'll have an ache in my right arm.

If I hold it for a day, you'll have to call an ambulance.

'In each case, it's the same weight, but the longer I hold it, the heavier it becomes. '

He continued, 'And that's the way it is with stress management.

If we carry our burdens all the time, sooner or later, as the burden becomes increasingly heavy, we won't be able to carry on. '

'As with the glass of water, you have to put it down for a while and rest before holding it again. When we're refreshed, we can carry on with the burden. '

'So, before you return home tonight, put the burden of work down. Don't carry it home You can pick it up tomorrow. Whatever burdens you're carrying now, let them down for a moment if you can. ' 'Relax; pick them up later after you've rested. Life is short. Enjoy it!

And then he shared some ways of dealing with the burdens of life:

* Accept that some days you're the pigeon, and some days you're the statue.
* Always keep your words soft and sweet, just in case you have to eat them.
* Always read stuff that will make you look good if you die in the middle of it.
* Drive carefully. It's not only cars that can be recalled by their Maker.
* If you can't be kind, at least have the decency to be vague.
* If you lend someone $20 and never see that person again, it was probably worth it.
* It may be that your sole purpose in life is simply to serve as a warning to others.
* Never buy a car you can't push.
* Never put both feet in your mouth at the same time, because then you won't have a leg to stand on.

* Nobody cares if you can't dance well. Just get up and dance.
* Since it's the early worm that gets eaten by the bird, sleep late.
* The second mouse gets the cheese.
* When everything's coming your way, you're in the wrong lane.
* Birthdays are good for you. The more you have, the longer you live.
* To the world you might be one person, but to one person you just might be the world.
* Some mistakes are too much fun to only make once
* We could learn a lot from crayons. Some are sharp, some are pretty and some are dull, Some have weird names , and all are different colors, but they all have to live in the same box

Dad

Alex, I'll Take "Autism and Genetics" for $1000

Kristina has a great article on her blog, Autism Vox...

(is this like: would you could you like Autism with a fox in a box? Hmmmm...)

...about the genetic question in regards to Autism. We felt that we should help with the Autism Genome project and got involved through the University of Utah. Being as we still appear to have the most children on the spectrum in one family, six, we hope for results as to why.

We love our children and accept who they are, but if a way can be found to reverse or 'fix it', we'll sign up. And if some feel that attitude is somewhat harsh, well... you try dealing with 6 children from 13 to 2 with Autism. No picnic.

We believe it has to be a combination of genetics and environment. My wife and I have no form of Autism. She has an uncle who we now believe is Aspergers and maybe a great-uncle, but that's it. Where did ours come from?

Until and likely past, we'll deal with the poopy walls and floors, destroyed furniture, bitten DVDs, shredded mail, books and magazines, escaping screaming huggable angels sent from above. Oh yeah, don't forget the MELTDOWNS... who can?

Dad

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

Tearing down the walls--literally

This morning, I let the little ones play in the yard like usual, before it gets too hot in the middle of the day. All the sudden, I heard Ammon. He was hanging on the door of our SUV uttering "Bah bah bah bah!" Well, Ammon, 3, classic autistic, aka Monkey Boy among many other things, finally found a way to penetrate the 5 feet tall stretch of fence in our yard. He brought a toy horse to the fence and used it to hoist himself high enough to get over the fence. GRRRR!!!!

Well, Ammon and Sarah, 5, also classic autistic, have this new thing they like to do, they like to peel the paint off the wall. I'm not exaggerating in the least, as my fellow parents of autistics well know. I'm not sure how they made the original edges, I'm guessing clawing or chewing and now they are removing large sheets of it off in one sitting. Anyhow, between that, the crayon artwork, the holes and the dirty paw prints, their bedroom/playroom is one trashed joint. Our landlord wanted to do an inspection a couple of weeks ago, and gave us a few days warning--which we thanked God very much for. Well, the place looked great for about a half hour, and then she forgot to come, argh! Maybe it's for the best, maybe she'll keep forgetting or put it off until we're able to move because she just might throw us out as soon as she sees that room, uff duh...

So, John and I were thinking of how we can avoid paint peeling in the future. I got what I thought might be a pretty smart idea--hard wood flooring on the wall, the kind that doesn't scratch, chip, and has like a lifetime guarantee. I don't even know if a contractor has done this or would do this. Another idea is paneling. I know it's considered UGLY by modern day standards, but if it stays on the dang wall--I imagine it's much more affordable than Bellawood too....So, has anybody else have/had this problem and found a solution? I thank you in advance for your suggestions, that would be much helpful!

Sincerely,

Robin

"Guck!"

We've been driving pretty much all week, running all over town doing errands to get ready for back to school. Our car came close to getting overheated yesterday, the reading of the temp was maxed out at 260, yikes! But, we thank God that it cooled off after we went to another store. Emma, 9, mild Aspergers, started getting a migraine headache after eating one of the suckers the bank gave us. We still can't seem to remember all the time that she can't eat things with food coloring, and cheap hard candy is the worst. At the store, her headache was coming on strong, so I gave her a plastic bag and told her to sit on the bench near the entry. She asked if she could look at the toys, and I said no. So, when we couldn't find her when we were done, I went to check the bathroom. An employee with a cleaning cart just entered the bathroom , I asked her if there was a 9 year old girl in here, and she immediately grumbled "No one is in here!" So, I had her paged. But, when she didn't come, I didn't freak because I knew exactly where she was--looking at Barbies in the toy department...

Back at home, Emma got so sick. The little ones had full diapers, especially Ammon, 3, classic autism. He doesn't talk yet, but does a lot of cute babbling and gibberish. But, once in a great while, he tries to say a little something and is successful--and this was one of those moments!!! He imitated the words of his 2 year old sister, Mary, PDD. He very quietly uttered "Guck!" (that's what Mary says when she's hauling chunks in her pants) and then he said "Boy da." Mary says that a lot, we don't know what it means, but she always says it excitedly and with a big smile.

John is coming home from his medical study today. I know he wants this place to look much better than he left it, but he's not going to get that luxury. This place is still trashed, but at least we've got everything and everybody ready for school which has been a HUGE undertaking. I talked to the elementary school social worker yesterday, she invited Emma and Nephi, 8, moderate Asperger's, to meet their teacher yesterday to help them transist. She said "So what are you gonna do all day now that all of them will be in school this year?" I said "Plenty." She smiled and said she's kidding, and I said "I know."

School time count down...and defending my son--with DIVERSITY!

Well, I haven't written a post yet except for my bio, I'm Robin Kirton, the mom of 6 autistic kids. My husband John had to help me post the bio. I've been kind of shy to write, I imagine all these eyes on me as I write, I really do--I'm a screenwriter and imagine the audience watching the films that play out in my head too--and I found out my clergyman reads this blog too, so I get a bit weirded out by that too sometimes...I only said "wierded out sometimes", I still love ya man! John showed me how to post too, so I hope I remembered it correctly. I've had requests for me to write more, I thank you for that, I honestly am flattered. I hope you won't be sorry by the end of this entry because I tend to not be able to stop for a while once I get going. I've had quite a day and have some stuff on my mind, so here it goes...

I truly do feel kind of bad for just going ahead and admitting it, but I am looking forward to school starting next week. We have had a long, hot summer full of not much to do, and a lot of fussing, screaming, crying and fighting around here, and I've had about all I can take on an all day every day basis--and the home with autistic kids being "just kids" is more like the normal kid on steroids. Nephi, 8, with moderate Aspergers, has been screaming and crying every time his 13 year old brother, Bobby, severe Aspergers, asks or tells him to do something he doesn't want to do--that Bobby tells him over and OVER again doesn't help, then he keeps claiming innocence when I tell him to stop bothering Nephi. Well, at least they get along when they play Game Boy...

John, the dad of our 6 autistic kids, is out of town for the entire week. He agreed to be a human gineau pig for an Alzheimer's drug--and he's the only aging fart in the study, the rest are young guys, ha! So, if it works well, then maybe he'll remember things better when he gets home, maybe he won't tell me the same old stories over and over again so much and I won't be the only one around here who can find stuff...You know how it is, seems like mom's the only one who can find anything around the house and as the mom, you cringe when you even think about asking anyone else to find anything because they CAN'T. Like, I ask a child to find something in the closet, they open it up for a fraction of a second, then close it and say "It's not there, I can't find it!" Then, I go open the closet, look under a thing or two and find it in two seconds flat. Argh!!!

I am trying so hard to get everyone and the house ready for school. Like John has said, I'm tired a lot. I'm so dang tired that I haven't cleaned my side of the bed since like 2006, last time I can remember at least. John cleaned it last week in preparation for a landlord inspection. The landlord forgot to come, and of course, the house is trashed again and my side of the bed is piled up with school stuff I hope to organize before school starts, and I mean this year....I just received Nephi's skateboard from Bobby because Nephi still refuses to get his clothes and room ready for school. Buying a stupid back pack that had a skateboard included for that child was one of the purchases I regret most in my life...and now I have an 8 year old boy screaming and making choking sounds like that kid from the Omen.

I guess I'm just thinking out loud right now....Hey, here's a good story about one of our latest autism adventures into the public at large. I brought the entire gang to a local hamburger joint we like to frequent every so often, they have tall tables that Sarah, 5, with classic autism likes to sit on and doesn't scream about, and they have a great indoor play place that they enjoy too. And, I just could barely believe my eyes and ears...the kids were GREAT! They all sat quietly, even Ammon, 3, classic autism, who is constantly on the move. He would sit in the booth, but tossed the booster seat on the floor. They ate quietly, then they played more peacefully than they ever had. Sarah the screamer hardly screamed. They were complete angels!!! There was an old couple sitting nearby and the wife kept looking at the kids like she was rather aggravated, and she seemed puzzled too, like perhaps she didn't know what "autism" meant--I remembered to put our Moodees autistic t-shirts on them today. Well, she just kept looking at them and looking at me, then looking at them again and me again...I was totally waiting for the moment when she couldn't help herself anymore and had to say something. I was ready to say something like "I know that you're from the generation where kids are supposed to be seen and not heard...autism didn't exist back in the good old days...and...What are you talking about?! This is the BEST they've ever behaved in public, what you're witnessing right now is a freaking miracle, lady!" Perhaps she worked it out on her own, she started smiling at me as she and her husband left...Perhaps she was just relieved to get away from my kids too. Whatever.

We went to Walmart afterwards to get a few last minute school supplies--and that didn't go so well. I swear everyone who saw or heard Sarah stood there with stunned looks on their faces looking at her and myself, and my feuding boys who started up again. Doesn't anybody at least try to conceal their horror anymore? Have people no shame? Anyhow, on the way out of the store, Bobby luckily noticed that Sarah was trying to make off with an Angelina Ballerina DVD. I've heard way too many horror stories about Walmart's zero tolerance policy about shop lifting, so I thank the Lord above Bobby noticed it before the alarm went off, I was publicly hauled off in handcuffs and the kids were taken into state custody....I've heard of that happening before, no joke. Anyhow, I don't dwell on that, Walmart has most everything I need at the prices I like, and I've become accustomed to spending time in court, and the letters "ACLU" popped into my head when I envisioned that possibility for a brief moment. Anyhow, the look from the cashier made me uncomfortable, like maybe she was thinking I was trying to shoplift, but planned to blame it on the kid. It didn't get better when I passed the friendly greeter. The nice, friendly people greeter became unfriendly. Sarah came out of the store screaming her head off because I didn't buy the #@! DVD, and I then had to spend a few minutes putting her sandals back on so her feet didn't burn on the asphalt pavement in the approximately 100 degree heat--Sarah HATES shoes and constantly takes them off. Bobby was holding Sarah by the arm as we left and the greeter--whom I even had a friendly conversation with the last time I saw her--told me that my son was giving the little girl bruises on her arms from squeezing her too hard! Well, I had to defend my son. I said that she already had those bruises because she jumps around and rough houses a lot because she's autistic.

Crud, this is a constant emotional roller coaster ride, it's like I'm always on the edge of misunderstandings and accusations and like I could get my kids taken away again just because they're loud and socially inappropriate--and I feel like I'm expected to make them act perfect all the time and deal with them perfectly, politically correctly and like every other "normal" kid should be dealt with...but the thing is, they're NOT "normal"! How about that politically correct ideal that no one should hurt anyone's feelings, that everyone and everything and all our diversity should be accepted and celebrated?! Well celebrate this, world! Come see my kids in public and I'll show you DIVERSITY!!!

Are You Using Our T-shirts?

Please tell us your stories. A lot of people have purchased our AutismBites t-shirts and we are wondering how well they've worked for you and your family. Comments pleeeease...

Too Busy to Blog

I know I've been remiss in blogging more often. I drive a 10-wheel dump truck (hauls 17 tons) for my work and this past week I put in over 55 hours. Boy, did my butt hurt at the end of the day. After a long day I don't feel like doing more then popping a cold one (Sprite) and watching the boob tube.

As I've mentioned in the past, I really have been wanting to find a home job so I can help around the home with the children. Mom needs this, badly. I've been told MANY times that with my voice I should be doing commercials or audio books or radio. One lady told me I sound like the voice of God she heard on a religious video.

So I've finally decided I should take the plunge and take some training, do a demo recording and hopefully earn enough to quit the day job. Wish me luck.

Dad