Routine
by BrianRobinson
 Kaleidoscopic
May 21, 2012 | 3131 views |  0 comments | 8 8 recommendations | email to a friend | print | permalink
     Some autistic people are locked into strict routines.  There could be different reasons for this, from always knowing what comes next and therefore being prepared for it, to needing that locked order to get through the day, to a simple preference of having things nailed down and not loose to minimize any surprises which would be tough.  Going away from those routines can cause anything from slight discomfort to meltdowns.
     We're lucky that Xan can handle changes and differences.  Things do tend to go wrong, accidents happen, and I can't tell you how many times even vague plans of ours (wanna try to grab a bite to eat one day this week, say) have run aground on the rocky shoals of life getting its own way.  I suppose we COULD get into a minute-by-minute plan if we really had to, but I bet something would crop up to destroy it quickly.
     In terms of scheduling, we are free from routines.  But we are not free from routine things.
     Like Xan fighting sleep.  We put him to bed early most nights, reasoning if it takes him four hours to go to sleep. starting at seven equals an eleven o'clock bedtime - getting him up around six means seven hours sleep.  Not too bad.  But if we put him to bed at eleven and he finally wears down at three and then we get him up at six, that's not too good.  At the least he will be cranky as heck and not wanting to do things for himself which will make him mad when we won't help, and he may fall asleep during the day.  Like many kids, one hour of a nap in the afternoon seems to recharge him for the day, which means another late night.
     And there's being around to help Xander do things.  Here we have to be very careful we don't get into habit of doing things for him but make him do as much as the task as he an himself.  But we're usually around to help him if he really needs.  The flip side of this routine is we don't get much time to ourselves, always keeping an eye and ear out to see if he needs help.
     Of course, there's the usual guessing game of what he says.  A lot of times when he IS asking for something using his words, he talks so fast we can only pick out a few words.  And he still has trouble with similar sounds - b,d,p, etc.  'Cheese Toast' in his regular voice and speed sounds a lot like 'Cheetos'.  Did he say 'Party Time' or 'potty time'?  One's a DVD he likes, one is a sign that he's got some problems going on.  So that's pretty regular for us.
     One thing is sure, though - all of his routines make him special.  And some routine things for others are more than special for us.
     We don't take anything for granted, and little steps he makes as he grows take on magical and fantastic colors to us.  He's started being very choosy about what he wears.  I lay out some clothes for him to change into after school, and about twice per week he puts back what I choose and grabs something else.  That's probably pretty common for kids, but for us it was huge.  Independent thought and choice, getting things himself instead of making us do it, picking his particular wants himself...all a special move.
     He's very vocal about what music he wants to listen to.  Lucero's "I Can't Stand To Leave You" is a huge favorite of his, as is Avenged Sevenfold's "Bat Country" - and those are kinda different songs.  It's so great to see him make choices, ask for those choices, and rock back and forth in the car as his music plays.  Every parent has seen this routine...but for us it's never routine.
     Him being able to handle what the world throws at him, for the most part, is also fantastical to us.  There are days when we're happy and proud of him for not doing anything that caused troubles, like when we put Casper to sleep, when the pipe broke, when I had my knee surgery, all of them unscheduled and stressful.  But he handled them all mostly well, which was a huge help for us.  Others may expect that from their kids as a matter of course. 
     And so many more things that others may take for granted.
     Our routine is anything but, and some routine acts of his are miraculous.  
    
    
Mother
by BrianRobinson
 Kaleidoscopic
May 13, 2012 | 2022 views |  0 comments | 9 9 recommendations | email to a friend | print | permalink
     Happy Mother's Day.

     Xan is very lucky to have Tracy as a mom.  Even in his most challenging times, by issues or attitude, she loves him unreservedly and completely.  While understanding his problems and struggles, she never lets him settle for less than his best - much as he tries to convince her too.  When exhausted after a long day at work, she always puts him to bed so they can have some time to themselves.  Even when sick - which she is today, continuing our trend of special days equaling problems - she takes care of Xan.  She always sets a great example of parenthood, giving Xan a support system unrivaled and a hard to reach example for me to follow.

     Even with all the extra struggles of Xan's autism and nonverbalness, she manages to be caring and patient.  It's hard to know what he thinks at times, but it's obvious he loves mommy and I think he knows he's lucky to have her.

     If for no other reason than to give him a break from me.

     Happy Mother's Day, Tracy.  You are an inspiration.  Even though Xan doesn't say it, he knows it.
Loss
by BrianRobinson
 Kaleidoscopic
May 07, 2012 | 1601 views |  0 comments | 17 17 recommendations | email to a friend | print | permalink
     We had to put one of our cats to sleep Sunday.  He was seventeen years old - been with us for almost all of our married life.  It hurt.  We treat our cats like family, and to lose one is painful.
     Xan was with us at the vet's when it happened, in the room with us.  Babysitting isn't really an option, and I think he wanted to be there to say his goodbyes in his own way.  He gave Casper a little pet, and showing some empathy unusual in autistics, kissed mommy when she cried.  He did the same thing when our first cat died too - he understood she was hurting and wanted to help her.
     Don't think I wasn't crying, either, but as we all know, he prefers mommy and wants to make her happy.
     It's hard to know how autistic people understood death.  They see someone isn't there anymore, but do understand the sadness and the loss?
     If you're more than casually interested in autism, you've probably heard the name Carly Fleischmann.  If not, she's an autistic girl (teenager, I think) who was uncommunicative, but then started to type out thoughts and feelings in a deep and meaningful way.  In addition to the inspiration of her even being able to communicate, her writing is light-years above many adults making a living doing the same.  She is also able to relate how she feels and reacts to things that help other autistics and parents of autistics to perhaps get an idea of what they go through.
     (Perhaps - the saying is, if you've met one autistic person - you've met one autistic person)
     By a sad coincidence, she recently did a post on Facebook detailing how she's dealing with the death of a friend, and she said what we all feel when a loved one dies - she's sad, and it's not fair when some die.  A universal constant.  I've posted before of how Xan reacted at my mom's funeral, where he definitely showed his anguish.  
     Loss is change.  It goes from having someone around to them being gone.  But loss is also part of love - you have to care about someone to hurt when they hurt, or when you have to say goodbye.  And another part of love is strength to lose someone.
     We had to decide that Casper was suffering, and be strong enough to let him go instead of keeping him here so we didn't have to say goodbye.  It isn't fair, but it is.
     But loss doesn't have to be that drastic.  Xander is, little by little, getting more independent.  We still don't know if he could handle being by himself, but he is able to be more trusted to do some things now.  It isn't always easy but we try to make him do more - which always means we're losing him, little by little, with its benefits and sadness.
     It would be easier, sometimes, to just go along.  Do it for him, take the responsibility out of his hands.  Sometimes we do.  But more often than not, we have the strength to make him do something, to make him lose that dependency and get him stronger and pay for that change  in yells, fits. arguments, complaints, stress and troubles.
     Parents are used to this, making their child their own person and able to handle themselves so they can go out in the world and make their own way.  They suffer and have to be strong, all for the ultimate goal of losing their children from their home.  We're no different in that goal, but our particular trials and methods are much different.
     Saying goodbye, in all its forms, takes strength.   It hurts, and a lot of times all you can say, like Ms Carly did, is it isn't fair to have to suffer that way, either from being the target of anger for making someone do something on his own to letting a beloved cat going to its final sleep rest its head on your hand as he slips away.
     Loss is part of love, and the final payment for all those smiles and laughs you get from time spent with a loved one.
     RIP Casper. 
     
Normal
by BrianRobinson
 Kaleidoscopic
Apr 30, 2012 | 1567 views |  0 comments | 18 18 recommendations | email to a friend | print | permalink
     The Oxford walk is over.  It was a bit more hectic than last year, and a couple of things went wrong, but the turnout was good and people seemed to have a good time.  Thanks to everyone who walked, special thanks to everyone who helped, and praise beyond words to my wife for setting this whole thing up and dedicating much of her time and efforts to it.  Now, life can get back to 'normal'.
     Along with the walk, Autism Awareness month is almost done.  Last day is today.  For many of you, this means one more charitable memory jogger is in the past and another to come.  Your life can get back to normal, if indeed it was even affected.
     Our comparative definitions of normal would be radically different.
     Xan woke up laughing like a loon at 4:15 this morning.  I have no idea why.  I've blogged many times of the mystery and frustration of his lack of communication - this is our normal.  But another part of that is his spontaneous joy over something I don't recognize.  There are certain catchphrases that will send him howling in glee - not all of them from kid's stuff.  Mystery Science Theater 3000 (one of our faves) gives him a lot of things to laugh about, things I wouldn't have guessed he would find funny or, really, understand.  (I mean, what ten year old really gets the humor of one character saying "We're all doomed!" and a puppet firing back "Oh, he's a Calvinist!")  Which could just be that what I find funny in something is not what he finds funny - something beyond what I get.
     I don't think in these cases it's something sensory - like, on the flip side, the way echoes will bother him and make him cover his ears.  (I once read that autistic people get signals from their different sides of the brain at different speeds - think about that and then add an echo in there)  I believe in some cases the humor is the same for both of us.  Other times, maybe it's a particular sound or inflection in the line, or maybe something in the background I don't notice but what makes all the difference to him that comes back to him when he hears the words again.  Or, perhaps one of the words reminds him of something else that made him laugh - the code words I've referred to in other posts.  Kinda like how one story, not that funny, can remind you of something else and make you laugh anyway. 
      Xan may have woken up and seen the shadows dancing on the wall, which reminded him of, maybe, Shadow from Bear in the Big Blue House.  Or it could have made him think of chasing daddy's shadow when he was younger.  The way they moved may have triggered happiness for some odd reason - the merging and coming apart, the odd and free formed shapes, the way they would blend into the dark around them and come back again, like water splashing in a constantly rotating waterfall.
      Sometimes it's very, VERY hard to see beyond the things that cause him troubles.  Since we want to fix what hurts him or makes him upset, those things are naturally what takes precedence and moves to the front of the line.  And, since a meltdown commands a lot more attention than laughing, they also stick in the memory longer, sometimes along with bruises.
     That is part of our normal now.
     What is also part of our normal is being amazed at how normal things to Xander can be wondrous, extraordinary, amazing, hilarious, hypnotizing, engrossing and full of more than what I can see or imagine.  His different normality.
     Our normal can be tough, but his normal can be fantastic.
Walk
by BrianRobinson
 Kaleidoscopic
Apr 26, 2012 | 1290 views |  0 comments | 8 8 recommendations | email to a friend | print | permalink
     Saturday, we have the walk!  Oxford Stadium, 8 AM to noon.  Come out and see us and support the Autism Society of Alabama.
     It's a 3K walk...even >I< can handle that.  (I think)  You can still sign up at this site, or when you come to the stadium. 
    We're going to have soft drinks and pizza for lunch, a bounce house for the kids, and other stuff too.  And once this gets done I may have some more time to get back on blogging. 
     Hope to see you there.

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Wednesday, 19, 2013
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Anniston man with crazy hats had big heart
by Patrick McCreless
pmccreless@annistonstar.com
Jun 19, 2013 | 681 views |  0 comments | 13 13 recommendations | email to a friend | print
Darrel &quot;Sonny&quot; Clayton was known in the community for his profession as a clown. Clayton had hundreds of hats which were on display at his memorial service.  Photo by Courtney Davies
Darrel "Sonny" Clayton was known in the community for his profession as a clown. Clayton had hundreds of hats which were on display at his memorial service. Photo by Courtney Davies
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Sonny Clayton never met a hat he didn't like or a stranger he couldn't make a friend. A self-proclaimed clown, the Anniston native always had a balloon animal for a crying child or a big smile and helping hand for anyone in trouble. He was a kind of local celebrity and though people might not have known his name, his wacky hats and friendly attitude were unforgettable. Clayton died early Tuesday morning at his sister's home in Anniston. He was 60. A memorial service for Clayton was held Wednesday at Church on the Rock in Anniston. For decades, Clayton entertained children in full clown makeup at birthday parties, church events and parades. Only poor health forced him to give up his full clowning activities about three years ago, said Diane Tant, Clayton's sister. But even when he was not in clown costume or even at a special event, he would routinely go out of his way to brighten a child's day, Tant said. "He'd keep a bag of balloons in his vest pocket," Tant said. "If he'd see a child in Wal-Mart who was upset, he'd make a balloon for them." Clayton had vast balloon-making skills, able to create swords, poodles and even flowers. "He used to come down to our children's church and make balloon animals when we did fundraisers to bring people in," said Darlene Wood, secretary for Church on the Rock. "He knew all the children's names and they weren't afraid to approach him ... he didn't look like a grown up." Even when not in clown costume, Clayton looked amusing, which was just the way he liked it. Tant said the colorful hats Clayton wore were just another way for him to brighten people's lives. "He was always trying to make someone happy," Tant said. "He would say, 'if I can just make one person laugh a day, that's my goal.'" He almost never failed to wear a large, gaudy hat in public. Almost a hundred of the hats were displayed on four large tables at his memorial service. Hats of every shape and size were there, some that resembled large hot dogs and chickens to others that were patriotic red, white and blue. Beyond the hats, Clayton for years would go to local hospitals around Christmas to deliver candy canes to the medical staff there. "He thought all the doctors at the hospital did not get enough recognition," Tant said. Dr. Michael Kline, a urologist in Anniston who had known Clayton for 10 years, said Clayton never failed to be friendly. "He always had a smile on his face," Kline said. "And even though he might have had different types of medical problems, he never let it get him down." Curtis Kirk of Jacksonville, who grew up with Clayton, said the man's friendly, kind nature never wavered. "He never had a bad word to say about anybody and never hurt anybody or anything," Kirk said. Teresa Hayes of Wellington, who was also a friend of Clayton's, said he always tried to help other people whenever possible. "He was very unconventional in the way he looked, but he was the most kind-hearted person," Hayes said. Tant said Clayton was just a people person who talked to everyone he met. "He never met a stranger," she said. Staff writer Patrick McCreless: 256-235-3561. On Twitter @PMcCreless_Star.
American Medical Association recognizes obesity as a disease
by Patrick McCreless
pmccreless@annistonstar.com
Jun 19, 2013 | 565 views |  0 comments | 18 18 recommendations | email to a friend | print
As a nurse practitioner at the Oxford Adult Care and Weight Loss Center, Kanina Crosen sees Alabama's obesity problem firsthand. To her, obesity is more than a condition that 30 percent of adult Alabamians live with every day, according to Centers for Disease Control and Prevention. It is a disease. The American Medical Association, the largest physician group in the country, agrees, and officially recognized obesity as a disease Monday during its annual meeting in Chicago. But while the organization has no legal authority to dictate how obesity should be treated, some local health experts say the decision could spur physicians to more aggressively attack the problem and encourage insurers to offer more coverage for treatments and prevention. "I honestly do think it's a disease," Crosen said. "We try every possible angle to prevent it, the same way we might treat someone who has high blood pressure ... it's a problem we're trying to prevent." The AMA, specifically its house of delegates, voted to categorize obesity as a disease during its annual meeting in Chicago Monday. The decision went against the conclusions of the association's Council on Science and Public Health, which studied the issue the past year. The council determined obesity was not a disease since the body mass index, the measure used to define obesity, is overly simplistic. Statistics from the CDC show that obesity is a growing epidemic, with more than one-third of American adults being categorized as obese. About 17 percent of U.S. children are obese, the statistics show. The situation is particularly dire for Alabama, which is among the three states with the highest rates of obesity for adults. Obesity can lead to a variety of conditions, from diabetes to high blood pressure and cardiovascular disease. Dr. Lewis Doggett of Anniston Pediatrics, who focuses on childhood obesity and is working to create a childhood obesity clinic for the area, said obesity has been treated like a disease for some time. "I think whether they call it that or not, we certainly treat it like it's a disease," Doggett said. "It's got obvious medical morbidity attached to it and there's definitely prevention efforts with it." Doggett said he hoped AMA's decision will lead to more intervention and prevention of obesity among the medical community. At Anniston Pediatrics, Doggett tells parents to feed their children five servings of fruits and vegetables a day, cut out sweets and sugary beverages and encourage them to engage in one hour of activity each day. Crosen said she hoped the disease designation will encourage insurers to cover more treatments for obesity. "I hope insurance will cover more things like appetite suppressants, weight loss treatment and even gym memberships," Crosen said. Crosen said prevention of obesity is the key to dealing with a host of other diseases that many Americans have, such as diabetes. "You've got to start at the root of the problem," Crosen said. Dr. Jeff Terry, chairman of the Alabama delegation to the AMA and past president of the Medical Association of the State of Alabama, said he was not sure what, if any, effect AMA's decision will have on the medical community. "We want to acknowledge that obesity is a terrible problem affecting over 30 percent of our population, however, the council felt it did not meet the true definition of disease," Terry said. "This does not affect how we take care of obesity ... it is not important as far as how physicians take care of the patient." Don Williamson, Alabama’s state health officer, who attended the AMA meeting, said he had mixed feelings about the decision. "If it encourages insurance companies to cover preventive care, that's a positive development," Williamson said. However, he added that the disease label could encourage some people to take less responsibility for their own fitness. Dr. Timothy Garvey, chairman of the department of nutrition sciences at the University of Alabama at Birmingham, said he considered obesity to be a disease with genetic, behavioral and environmental causes. "I very enthusiastically welcome this decision," Garvey said. Garvey said the AMA decision could accelerate changes in society's understanding about obesity, and he hopes it will improve coverage offered by insurers. Garvey said insurers will cover bariatric surgery, a procedure involving the removal of a portion of the stomach to treat obesity, but not many lifestyle interventions like weight-loss programs. "We need to use all the weapons we have to treat this disease and it would help if insurers help cover prevention," Garvey said. Staff writer Patrick McCreless: 256-235-3561. On Twitter @PMcCreless_Star. Capitol and statewide reporter Tim Lockette contributed to this report.
A group of students listen as instructor Jeffrey Nichols talks to them about how to properly set up a camera at the Longleaf Studios in Jacksonville. Photo by Trent Penny.
A group of students listen as instructor Jeffrey Nichols talks to them about how to properly set up a camera at the Longleaf Studios in Jacksonville. Photo by Trent Penny.
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Film students learn the business of storytelling
by Laura Gaddy
lbjohnson@annistonstar.com
Jun 19, 2013 | 359 views |  0 comments | 18 18 recommendations | email to a friend | print
A group of students listen as instructor Jeffrey Nichols talks to them about how to properly set up a camera at the Longleaf Studios in Jacksonville. Photo by Trent Penny.
A group of students listen as instructor Jeffrey Nichols talks to them about how to properly set up a camera at the Longleaf Studios in Jacksonville. Photo by Trent Penny.
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JACKSONVILLE — On the floor of a converted warehouse Wednesday, Jana Tolliver steadied a light on a long, metal pole so it shone on an expanse of green-painted plywood. Also pointing at the green walls and floor were about a dozen other lights and one camera, waiting for action. Tolliver, 24, was one of a dozen teens and young adults in the warehouse to learn the basics of film production in a week-long camp hosted by the Northeast Alabama Film Initiative, a nonprofit established by Jacksonville State University to train a workforce to staff a local film industry. It’s hoped the effort will help attract filmmakers to take advantage of a 2009 tax-incentives law aimed at movie and television projects. For Tolliver, who hopes to become an animator, the camp is a chance to get her hands on movie-making equipment and learn how to tell stories through film. “I’m building an extra skill that might help me get a job related to what I want to do,” she said. The converted warehouse is the home of Longleaf Studios, the initiative’s facility in western Jacksonville. The green-painted plywood, according to program director Pete Conroy, is the largest green screen in an Alabama studio. Actors are filmed performing in front of the screen, and producers later replace the images of the green surfaces with other images so the actors can be made to appear anywhere in the finished film. Conroy said he hopes the program encourages some of the students to consider enrolling in film classes at Jacksonville State University being taught by Jeffrey Nichols, an artist in residence there. Nichols and Louisiana native Chuck Bush were leading the instruction at the camp on Wednesday. “This is round one,” said Bush, who broke into the entertainment industry as an actor in the 1985 film “Fandango.” “I teach them whatever they need to know.” On Wednesday, the students learned the basic framework of visual storytelling. Earlier in the week, they learned to use digital video cameras and how to set up studio lighting. By the week’s end they’ll have produced short films with help from the instructors. “It gives students a big heads up,” said one participant, 32-year-old Jonathan Garland, who has worked behind the scenes at WJXS-TV 24. “It amazes me that it’s in Jacksonville.” The Northeast Alabama Entertainment Initiative is being supported with state tax money routed through JSU. The 2014 Education Trust Fund budget includes $226,194 for the program, down from $426,194 in 2013. The cost for each student to attend this week’s film camp was $650, $300 of which is paid by the initiative, leaving the students to pay $350. The funding is intended to help the local economy cash in on the 2009 tax incentives bill, modeled on a Louisiana law that has grown a film industry in that state. According to the Motion Picture Association of America, 8,655 people have jobs directly related to the film industry in Louisiana, 3,400 of them in production-related work. The state has provided filming locations for movies including the 2013 releases “Now You See Me,” “This Is the End” and “Snitch.” In Alabama, 3,529 people work in the industry, according to the MPAA, 540 of them in production jobs. While some of the students in Jacksonville this week, including Tolliver, said they were drawn to filmmaking as a form of creative expression, the focus at Longleaf this week has been on the basic skills for workers behind the scenes. “It’s called show business, not show art,” Bush told a reporter Wednesday. Staff writer Laura Gaddy: 256-235-3544. On Twitter @LJohnson_Star.
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