Taking the Scenic Route

The Rule Book

25th May 2009

The Rule Book

Well, we found something that seems to be working well for Zane, so we thought we would share it with other parents with Autistic kiddos.

After noticing that he seemed to respond really well to flow chart type rules/consequences (we later learned it is a form of Social Behavior Mapping), we got an old notebook and turned it into a “Rule Book”.  We put all of his little flowcharts in it, short social stories, and other “rules” for him.  It seems to really help him.

An example:  One of the behaviors that was really becoming an issue is his obsession on whether or not Zora was wearing a diaper.  It was getting problematic because he was starting to peek under her dresses and such just to make sure it was there.  It got really worrisome when he started checking to see if Zach and I were wearing underwear.  We made an “underwear rule” that said he had to either ignore it when people weren’t wearing underwear/diapers, to look someplace else, and if it is bothering him, to go to his room or away from the person.    He still gets a little anxious, but after a few reminders, the behavior has stopped.  Because he is controlling his behavior, Zora isn’t purposly goading him any more either.  She will find another button, but this one isn’t as fun any more.

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4th April 2009

Study finds Autistic kids watch mouths.

No big surprise, but it was interesting. Zane did this a lot, and Zach’s family often commented that Zach did the same thing as a baby/toddler and were delighted to see Zane had the same quirk. It was one of the many things that didn’t seem abnormal because Zach did it too, although if the study is correct, Zane probably did it a lot more and a lot longer.

Anyway, here is the study: Toddlers’ Focus On Mouths Rather Than On Eyes Is Predictor Of Autism Severity

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4th April 2009

The 2009 CARE Walk

#94  My favorite Spokesperson, looking like the poster boy he is.

Getting Ready to Leave for the Walk.

We meet up with Carrie & David and their doggie (I can’t remember her name). Carrie was Zane’s first SLP and they had a really special connection. We were also expecting to meet M., the friend that Zane was paired with at WSU, but she was too freaked out by the crowds to want to get out of the car. Her mom walked with us, but her dad took M. back home when she couldn’t calm down.

The crowd begins to gather. I heard there were around 900 walkers.

After Chance talked about autism a bit (he was the older spokeschild), they introduced our family as they prepared for Zane to get the race started. Susan Peters, from the local ABC news station (KAKE), was the Emcee

Zane was excited to do the “Ready, Set, GO!” to start the race.

And, the walk. We ended up having to cut through the back door of Heartspring instead of completing the race because Zach isn’t fully recovered, and the kids were pooping out (I carried Zora for a while, then Carrie gave her a piggyback ride the rest of the way)

The food was good. Old Chicago and Popeyes (and I think somebody else) provided food for the walkers.

It was a lot of fun and, despite the wind, it went a lot better than last year. They had bounce houses and were more spread out so it wasn’t as overwhelming. Zane is also getting better at crowds, so that was a major plus too.

I thought I had avoided being interviewed this year, but KFDI ended up tracking me down to talk for a while. I know I am decent at interviews, but dang I always feel stark cold fear when somebody puts a microphone towards me and I have no idea what they are going to ask me. I think in “essay”, not “sound bites”, and it really forces me to adjust quickly.

posted in Autism, Autistic Life, Friends, In the News, The Kids, Zane | 2 Comments

17th February 2009

Shooting a Promo

#48 Autism Walk Commercial Day (where I accidentally left the camera in the car and missed the really good shots)

They had a sign that said “Get to Know Me” on it, for Zane to hold in case he wasn’t feeling talkative that day (he isn’t always).  We couldn’t get him to repeat the line, but since he can read, I suggested they hold the sign above the camera.  They did, and he did a great shot, appeared to look at the camera, and enthusiastically said “Get to K -no me”, pronouncing the silent K.  Everybody burst out laughing.  I rewrote the sign with “NO” in place of “Know”, and we reshot it.  It worked, although not quite as enthusiastic.

edited to add video:

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10th February 2009

Some light reading

#34 “Reading in the Waiting Room for ST”

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1st February 2009

I found a video with clips of the “Beyond Words” autism dance

We were watching “Psych” last night and they mentioned Taye Diggs, which got us talking about the dance performance “Beyond Words” we saw (the dance company, dre.dance, was formed by Taye Diggs and Andrew Palermo) and I was googling them to confirm that I remembered it right. One of the results was a You Tube video with clips of the dance we saw, and I thought I would share because I was really excited to see it.

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1st January 2009

A great way to bring in the new year…go vote!

It isn’t perfect, and there are things I would add to it, especially to protect the rights of autistic adults (like including autistics on the panel suggested in #12), but it is a serious step in the right direction.

As a country we have watched Autism Spectrum Disorders grow in a devastating number. Over the last decade it has spiraled so quickly out of control that:

1.) There must not just be one person but an ENTIRE U.S. OFFICE OF COMPLIANCE for Educating Children with Autism.

2.) The use of Time Out Rooms, Corporal punishments, Restraints, and the high amount of Abuse must be monitored with severe penalties to states and fines or conviction of those that break such a REFORM Law.

3.) School Districts/States must each have an ” Office of Autism Education Compliance or be subject to loss of Federal Funding.

4.) Due Process Hearing Officers must NOT be employees of the state and shall be employed by the Federal Government ONLY.

5.) Insurance companies MUST provide the Early Interventions such as ABA Discreet Trial at no cost to parents.

6.) Protection and Advocacy MUST be funded properly to allow parents that need help get it without any more then a 15 day waiting period.

7.) Grants for research, education, and non profit organizations for those with Autism Spectrum Disorders must be made in the amount of 5 billion dollars.

8.) Relief for parents who have paid out of pocket to educate their children must be made swiftly with 100% reimbursement.

9.) Behavior Intervention Plans must accompany all Individual Education Plans.

10.) Insurance companies must make available all resources for children and adults with Autism Spectrum Disorders including but not limited to any items deemed necessary by the physician for the treatment of metal toxicities and any other theraputic orders their physician may order.

11.) The Autism Reform Act shall consider all Autism Spectrum Disorders including Aspergers.

12.) This Reform Act must be ‘open’ for additions as needed and create a 12 parent panel to propose such additions.

- Michael Robinson (Founder The Office of Advocacy), Wahiawa, HI

posted in Autism, Politics | 2 Comments

5th December 2008

Everything causes autism

Now they are trying to blame rainy weather.

Now, everybody lip-sync “Blame it on the Rain” lol

WASHINGTON – Children who live in the U.S. Northwest’s wettest counties are more likely to have autism, but it is unclear why, U.S. researchers reported on Tuesday.

Michael Waldman of Cornell University and colleagues were searching for an environmental link with autism, a condition characterized by learning and social disabilities.

They got autism rates from state and county agencies for children born in California, Oregon and Washington between 1987 and 1999 and plotted them against daily precipitation reports.

“Autism prevalence rates for school-aged children in California, Oregon and Washington in 2005 were positively related to the amount of precipitation these counties received from 1987 through 2001,” they wrote in the Archives of Pediatrics & Adolescent Medicine.

Dr. Michael Fitzpatrick, a London physician who wrote “Defeating Autism: A Damaging Delusion”, expressed doubt, noting that autism diagnoses are on the rise in all climates.

No one know what causes autism, whose symptoms range from severe social avoidance to repetitive behaviors and sometimes profound mental retardation.

The U.S. Centers for Disease Control and Prevention estimates that about one in every 150 children has autism or a related disorder such as Asperger’s Syndrome. Rates in many countries have been rising, although that may be partly due to increased reporting and diagnosis of the condition.

Doctors agree there is a genetic component to autism. They also theorize that something in the environment and possibly conditions in the womb can trigger the condition.

The researchers said their study supports this idea.

Perhaps infants and toddlers are kept are kept indoors in front of the TV more in rainy climates, and that somehow causes brain changes, they said. Or perhaps they breathe in more harmful chemicals while indoors.

Vitamin D deficiency caused by insufficient time in the sun might also be a trigger, they said.

“Finally, there is also the possibility that precipitation itself is more directly involved,” they wrote. Perhaps a chemical or chemicals in the upper atmosphere are transported to the surface through rain or snow.

“In recent years autism has been blamed on everything from discarded iPod batteries to mercury from Chinese power stations, from antenatal ultrasound scans to post-natal cord clamping, from diet to vaccines,” Fitzpatrick said in a statement.

The U.S. Centers for Disease Control and Prevention has launched a long-term study to find the causes of autism and other childhood conditions.

posted in Autism | 1 Comment

2nd December 2008

3 steps forward, 2 steps back

Zane has shown some neat new behaviors lately…asking questions like “what are you doing?” and “where is ____?”, and playing that game with a cousin at the family gathering. However, he has also started doing some super annoying vocal tics. He has a new throat clearing thing, and a voice dipping thing. Really annoying and we haven’t figured out what triggers either of them yet.

And, although it seems humanly impossible for his poops to get any worse, they somehow have managed to knock it up another notch in bad. Yuck. And very frequent yuck, I might add. And rash. *sigh*

On a similar note, I was wondering if, in fact, he started having autistic symptoms on his first birthday (or there abouts) because I remember that is the first time he got really sick and I think he had an ear infection. I was thinking that the symptoms didn’t really change after that, but I really wasn’t sure. I know they were definitely there later, and I remembered him as a baby being interactive, but I couldn’t remember when it changed.

It wasn’t his first birthday. We had a lot of problems getting him to look at the camera already, before he was sick, before his birthday. I went back, skipping a month here and there, and there was little change until I hit August. There was some difficulty getting him to look at the camera, but there were more engaged shots mixed in. As I went back, there were more and more shots of him being engaged. Then I caught a series of shot that happened over the summer. He had a really, REALLY bad yeasty diaper rash and we had him naked, outside in the sunshine out on my Grandparent’s home place (rural farm). Lots of cute chubby naked baby pictures. And that rash. And I kept looking back through time and there were far more “engaged” pictures than where we are working to get his attention. Almost everything shows a typical development before that.

That damn rash. Was that it? Why didn’t I notice the difference? I know that at 5mo he responded to his name. When did that stop? I didn’t even notice it. I know, in real life, it was stretched out over time, and it was at an enormously stressful time in our lives. We had just been laid off, and the reason we were at my grandparent’s house over the summer was because we were house-sitting/renting over the summer after grandpa’s death while they were getting the farm ready for the farm sale in the fall. Zach started back to school that summer, taking an English class. We were so poor that we were scared of not having food and started on food stamps. Months before everything had finally looked like we were on our way…nice apartment, new baby, good job. And then a layoff blew everything into bits. Maybe even more than we realized at the time.

What if I had noticed. Would things be different? I know it doesn’t matter now, and we can only start from where we are. And I know that Zane was destined to be on the spectrum (more chance than not, given his genetics), but would he be as severe if not for that? Was it the rash, or was the rash caused by starting on solids? It was within weeks of starting on solids. (we have pictures of that too…I could actually figure out the dates if I wanted to).

A lesson in why you should never look back. I can’t change it. I can only be haunted by it at this point.

posted in Autism, Autistic Life, Zane | 4 Comments

2nd October 2008

other words on “beyond.words”

From the blog Elvis Sightings (a blog I added to my blogroll after discovering), there is another review written by the dad of the blogger who also saw the performance I did.

From the local paper, the Wichita Eagle from September 18 & September 19

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  • Zane's age

  • Zane is 22 years, 5 months, and 26 days old
  • Zora's age

  • Zora is 18 years, 5 months, and 30 days old
  • Random Quote

  • Make a Joyful noise to the Lord, all the lands. Serve the Lord with Gladness! Come into his presence with Singing! — Psalms 100: 1-2

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