Ah, June...

Another Sunday begins another week.  Three weeks left of school.  I am sort of relieved as I need a break and have much to do to try to find my garage in the sea of boxes from last year's move.  I worry about Jimmy - I think the transition away from school will be a lot.  His classmate is gone and I think he knows Miss Harris isn't coming back.  Not only that, two of his IAs are moving on to other classrooms, which is going to be a complete disruption for him.  I am four months away from September and I am already fearing disaster.  He is also showing some severe OCD traits right now, so we likely have a medication change on the near horizon.

On the upside, he has much to engage him this summer.  Summer school and extended care in addition to therapy.  Swim lessons through a friend, a crucial skill for him.  I am just hoping I can keep him on an even keel for everyone's sanity.

I am sad she lost, but she is still wonderful...

Interesting Website

... Called Autism is Not the Boss.  Worth checking out...

What I am doing right now...

Having cleaned the house earlier, I am currently on the main level (DH brought work home.)  Jimmy is monopolizing my laptop and Jacob is watching a Spongebob Squarepants DVD.  All is as it should be.  I think my life can be measured in the quiet pauses between the chaos.  There is a little dull noise of a yellow seasponge, but we exist in companionable silence, together but engaged in our things at the moment.  It is rather cool.  Don't know how long it will last...

Do I need one more concert?

This would be a no brainer if it were July OR it were Nissan, but it's when I am back at work.  And requiring a rush hour drive to Columbia.  I want to soooo badly.  Aaaahhh!!!

T????

THE KILLERS
@ Merriweather Post Pavilion • Columbia, MD
August 31
6pm Gates

Thomas the Tank Engine Helps Autistic Kids Identify Emotions

From CNN.com

"Thomas the Tank Engine, whose television adventures on the fictional island of Sodor have delighted children around the world for years, is now on a real-life mission to help kids with autism.

Thomas the Tank Engine is part of a new online game to help autistic children recognize different emotions.

The steam locomotive and his friends are the stars of a new game in Australia, designed to help autistic children recognize emotions."

I actually found the link to the game at the Australian website. I am sending it to Jimmy's teacher to try with Jimmy and his friends.

Gotta Love Denis Leary

So this group Autism United posted the autism chapter of Denis Leary's book, allowing me to finally read it without actually having to line his pockets.  Wow, he is one hateful little man.  Nothing redeeming about him, not even his work for firefighters.

CHAPTER 6 AUTISM SHMAUTISM

In my day self-esteem came from actual performance and a clear understanding of your place in the world. The facts were laid out almost from the get-go-if you wanted to be a model and you were a girl you had to be tall and thin. If you wanted to play baseball there was no god dam wiffle ball or a special "soft" pretend, fakey baseball set up on top of a standing tee -- you had to learn how to hit an actual pitched HARD baseball. Which sometimes would hit you in the face if you didn't get out of the way fast enough. Which would break your face. Which would hurt like hell. If you wanted to be in a rock band you had to learn how to sing and actually pay an instrument. While on drugs. Lots of drugs. If you were ugly then you were ugly and there was very little hope you were going to change the way you looked unless the baseball that crushed your face rearranged the bones and let you come out the other end looking like George Fucking Clooney. These were the cold, hard facts of life and your parents were in charge of supplying you with every single one of them.

There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumbass kids can't compete academically so they throw money into the happy laps of shinks and psychotherapists to get back diagnoses that help explain away the deficiencies of their junior morons. I don't give a shit what these crackerjack whackjobs tell you---yer kid is NOT autistic. He's just stupid. Or lazy. Or both.

87

I know a couple of autistic children and let me tell you something they both have in common-they are extremely bright and attentive and  much like Rain Man-have individual talents and abilities that would lay your empty little tyke's video game-addled soul to waste. A truly au tistic child may be able to reproduce music he or she hears with perfect pitch-entire classical pieces, the rock opera Tommy, the latest hit Broad way musical-over and over again. OR tell you instantly upon hearing what your birthday is-what day it has fallen on every year for the last four decades. What the weather was on those days. Who the president was at the time. What the number one song on the radio was just before singing it note for note and word for word. THAT'S an autistic child. Not some fat-assed simpleton whose brain has been fried by television and the Xbox and no proper daily attention from his or her supposedly caring parents.

Maybe your kid is not autistic. Maybe he's just a dolt. And thank your lucky stars for that. Face the facts. Autism is up and who knows why--parents who wasted time, their brain cells and a lot of healthy DNA on way too many recreational drugs is this doctor's guess---but I refuse to sit here and believe that half the idiotic offspring I come across even amongst my own friends and family are a part of that problem.

Seen in the Manassas McDonald's Drive Thru

The boys were beyond amazed...

GAO: Schools restrain, confine disabled children

From USA Today:

"Children with disabilities are being secluded from classmates and restrained against their will to control their behavior, a new investigative report finds — interventions that have led to harm and, in rare cases, deaths.

In many cases, the restraints happen even when students aren't physically aggressive or dangerous, says a report from the Government Accountability Office being released Tuesday."

These are fairly common practices that parents have to fight with the schools over their autistic kids.  I battled it during the Rifton chair incident during kindergarten.  I hope our story serves as a cautionary tale within this school division to not engage in these practices when handling special education students.  It was extremely mild as opposed to the ones cited in this article.  

A Little Political Round Up...

 An idle little exercise, searching for quotes and positions about autism online.  

 Terry McAuliffe 

 

 I will have to post the contents of that letter he sent me, or at least quote from it heavily.  It's  downstairs, so that will wait until tomorrow.  After the article in The New Republic, he sent  me a longer letter regarding his plan to help individuals with autism and their families.

 Creigh Deeds

From the Roanoke Times:

"Democratic gubernatorial candidate Sen. Creigh Deeds of Bath County attended the rally and called autism a "national epidemic."

"It's just right that it be covered," Deeds said. "I believe eventually if this bill does not pass, the market will provide coverage. But we cannot wait.""

Brian Moran

From his own campaign website:

"Brian Moran will set the goal of making Virginia the leader in Special Needs education by the 

end of his term."

Bob McDonnell

Seems like he has supported autism organizations in the past, but I can't find a solid quote or policy statement online.  If anyone can hook me up, I would like to include it.  The effort to help kids like Jimmy is a bipartisan one (evidenced by Jackson Miller's unfailing support of HB 1588), so I hope that I can come up with something.

Creigh Deeds Tweeted Me Back...

So I was messing around with Twitter this afternoon and I tried to tweet the candidates for governor of Virginia to ask them about their autism platform.  One of the democrats (or his staffer, but I think it might actually be him) actually responded.  He got my name wrong, but heck, he got the basic answer right...  I am so pleased.  

In fairness, I have had some correspondence with Terry McAuliffe's campaign on the issue and spoken to a Brian Moran staffer (I want to say it was Keith or Kevin) at length.  DH is swearing that he won't vote Moran because of his negativity towards McAuliffe about supporting Hillary Clinton over Obama.  He thought bringing it up was so stupid that he will not cast a vote for Moran now.  DH is now leaning Deeds.  I am still undecided, but I am going to take a close look at him.  I know more about McAuliffe as his folks have filled my mailbox.  ;)

Deeds' tweets are below.  It's great that he took the time to response off the cuff like that.  

1. @Realrtyblah. Bottom line is families need more support but so does growing adult population with autism. 140 characters not enough 4 policyabout 3 hours ago from TwitterBerry
       
2. @Realrtyblah. 1. Require insurance coverage 2.Autism is epidemic. Schools need to be better equiped. 3. Autism waivers need to be expandedabout 3 hours ago from TwitterBerry

Support the Autism Treatment Acceleration Act of 2009

Autism Treatment Acceleration Act of 2009 - Federal Autism Insurance Reform (S. 819, H.R. 2413)

In his Presidential campaign statement on Autism Spectrum Disorders, then-Senator Barack Obama committed to bringing autism insurance reform to our entire nation. His statement put forth that Obama and Biden "will mandate insurance coverage of autism treatment and will also continue to work with parents, physicians, providers, researchers, and schools to create opportunities and effective solutions for people with ASD."

In an effort to put his words into action President Obama has asked Illinois Senate colleage Senator Richard Durbin (D-IL), along with Senator Robert Casey (D-PA) and Senator Robert Menendez (D-NJ) to introduce comprehensive autism legislation, including a section addressing broad based federal autism insurance reform. The companion bill in the House (H.R. 2413) has been introduced by Representatives Mike Doyle (D-PA), Chris Smith (D-NJ), Eliot Engel (D-NY), and Hank Johnson (D-GA).

The “Autism Treatment Acceleration Act of 2009” (ATAA) contains a total of twelve sections, each putting forth a different program for autism. A key feature of the bill is Section 12, which contains the provisions for federal reform of autism insurance coverage. If passed, Section 12 will require all insurance companies across the country to provide coverage for evidence-based, medically-necessary autism treatments and therapies.

Come Undone

Jimmy is backsliding a bit.  I think it is the departure of his longtime classmate.  She left a week and a half ago now.  In that time, there has been a notable uptick in accidents and some really uncharacteristic screaming fits.  I am going to follow up with school, but it sort of has me panicked, with the upcoming change in teacher into summer school and again into fall.  His one on one is going to be a classroom aide, according to the head of SPED, so that will be another adjustment as well.  I feel like we have hit the autism bonus round lately, with the screaming, the fights with his brother over control type issues, and the peeing (everywhere but the toilet.)  It's not that it hasn't happened before, it is just worrisome since we are the beginning of a whole bunch of changes for him.  What are we in for?

A Genetic Clue to Why Autism Affects Boys More

By ALICE PARK

Wed May 20, 5:50 pm ET

Among the many mysteries that befuddle autism researchers: why the disorder affects boys four times more often than girls. But in new findings reported online today by the journal Molecular Psychiatry, researchers say they have found a genetic clue that may help explain the disparity.

The newly discovered autism-risk gene, identified by authors as CACNA1G, is more common in boys than in girls (why that's so is still not clear), and the authors suggest it plays a role in boys' increased risk of the developmental disorder. CACNA1G, which sits on chromosome 17, amid other genes that have been previously linked to autism, is responsible for regulating the flow of calcium into and out of cells. Nerve cells in the brain rely on calcium to become activated, and research suggests that imbalances in the mineral can result in the overstimulation of neural connections and create developmental problems, such as autism and even epilepsy, which is also a common feature of autism.

"Our current theories about autism suggest that the disorder is related to overexcitability at nerve endings," says Geri Dawson, chief science officer of Autism Speaks, an advocacy group that provided the genetic data used by the study's authors. "It's interesting to see that the gene they identified appears to modulate excitability of neurons."

For the new study, researchers at the University of California, Los Angeles (UCLA), combed the genetic database of the Autism Genetic Resource Exchange (AGRE), a resource of DNA from 2,000 families with at least one autistic child. The scientists focused on the more than 1,000 genetic samples of families in which at least one son was affected by the disorder, prompted by the results of an earlier study using the same database, which identified a rich autism-related genetic region on chromosome 17 that contained genetic variants more common in boys than in girls. While nearly 40% of the general population has the most common form of CACNA1G, one variant of the gene was more prevalent in autistic boys, researchers found. "There is a strong genetic signal in this region," says Dr. Daniel Geschwind, director of UCLA's Center for Autism Research and Treatment and one of the study's co-authors. "But this gene doesn't explain all of that signal or even half of it. What that means is that there are many more genes in this region contributing to autism." 

That's not surprising for a disorder as complex as autism - actually, a spectrum of developmental disorders involving impairment in language, social behavior and certain physical behaviors - with symptoms that range widely in number and severity. So far, studies have linked a handful of genes, all of which play a role in the way nerve cells connect and communicate, with autism spectrum disorders. It's likely not only that a large number of genes contribute to the disorder, but also that a different combination of genes - as well as unique interactions between genes and environment - are responsible for each individual case of autism.

So it's certainly a daunting challenge to begin teasing out the individual genes that may contribute to autism, as the UCLA team has with CACNA1G, but databases like AGRE make the job slightly easier. The next step will be to try to use known autism genes to help develop screening tools or early interventions. "We are going to have a much better understanding of the causes of autism over the next five to 10 years," says Dawson. "We're in a period of great discovery."

Could a Gene Test Change Autism?

An interesting article about the implication of identification of a gene that may be responsible for about 15% of autism cases.

"Termination of fetuses with Down syndrome is routine today; given the fear that autism inspires in parents, why wouldn't it follow? And what would our world be like without autism? The vast differences among individuals on the spectrum make the notion even thornier: will parents start demanding to know whether their fetus will be low- or high-functioning? But it's also impossible to ignore the parents who say they'd do anything to free their children from isolation and pain. Some feel so hopeless so much of the time, they do wonder in private if their children would have been better off not born. And who can blame them?"

I have sort of long feared this, the ethical issues that would come up in the search for a cure.  Something tells me that insurance companies would sooner pay for a child with autism not to exist than pay to actually help us raise him.  And in some rich irony, I often find that those who support arguments about reducing social funding and insurance mandates to help care for children with disabilities like autism are usually also those who are the most against abortion.  So which is it, people?

And before anyone asks the question, I would have him a million times over, even if I had known.  I love him.  I always have.

From Time: Growing Old With Autism

Must read.  I have to go have a long weep now...

My sad little boy...

So Jimmy had a huge crying jag today that broke his teacher's heart (and pretty much everyone elses.)  The little girl in Jimmy class has been gone for three days.  Since he can't communicate, we can only assume from his grief that today, day three, he has realized that she isn't coming back.  I got a message from the teacher fairly early in the morning that Jimmy had starting crying, saying her name repeatedly, and was inconsolable.  By the time I got the message, an hour had passed.  He had just calmed down and started working.  

When his therapist and I went to pick him from school, I was pleased to see him smiling.  Sadly, he got a little emotional on the walk home as well.  He gets sad when he leaves school, but he kept asking for her by name on the walk home.  We are going to have her over for the teacher's going away party, but just it is going to difficult for him to understand for quite awhile.  Jimmy and this little girl are the same age and they have been together since in the same class and on the same bus since they were 2.  Jimmy's almost 8 now.  I don't know how he perceives this, but my heart is breaking for him nonetheless.  I didn't appreciate how important she was to him until now.  

Please explain...

Why I have some measure of eloquence when I write, but when I get in a room in front of 30 or 40 adults, I sputter and choke on my own words?  I need to write stuff down before I wind up in front of a microphone or behind a podium.  Lordy.

My misadventure with Catoctin Popcorn Co.

So, I am a little mad at an online company, Catoctin Popcorn Co., and I feel the need to vent. 

I have a thing for kettle corn.  I shouldn’t, but I do.  DH often sends me shipments from this company with great kettle corn, Catoctin Popcorn Co. and it has been appreciated.  They always arrive at my work and are devoured by myself and a fortunate few friends.  If I was reviewing the product, there would be no problem.  It's good stuff.

One of my nieces in Texas has pneumonia, so DH tried to do something sweet and send a basket down to her.  I stood behind him at the computer and watch him type in and verify the address in Texas.  He put his credit card in and hit send.  No worries, right?

Well, guess what arrived at my office today.  “Feel better soon!” the card read.  What the bleep am I going to do with this?  When the heck am I going to have time to take this to the post office?  I called Catoctin Popcorn Co. and the owner Brian Casey answered the phone.  I explained what had happened, to see if I could get an explanation as to why since I watched DH put in the answer correctly.  He offered to fax me to order to prove that the address on his form was where it shipped.  That wasn’t the point, especially since I watched what was entered on my end. 

I am sure this could be easily dismissed as our stupidity if I hadn’t watched the whole thing with my own eyes, the correct information going into the computer.  We are repeat customers.  I know it isn’t clearly Catoctin’s fault, but you know, it isn’t clearly our fault either from where I am sitting.  I am thinking he might want to take a good look at his website to make sure this doesn’t happen again, but I am not holding my breath.  I am not saying he was rude or anything – Brian certainly was not at all.  I was upset at little, but I wasn’t rude either.  I just told him we wouldn’t be ordering with him again.  He didn’t seem particularly worried about that. 

That kind of shocked me, you know.  I have fifteen years in retail and DH used to own a small business.  I was trained that the customer was always right and the last thing you wanted was an angry customer, even if they were to blame to some degree.  I saw DH go out his way to make a customer happy.  Since I saw the address go in correctly, I think I am in the right here.  Even if he thought I was in the wrong, he should have acted concerned and I just didn't get that.  As a repeat customer, he should have thrown me a bone.  I guess that philosophy and pride in excellent customer service is dead and gone.  In my experience today, that isn’t the service philosophy of Catoctin Popcorn Co..  It’s too bad… their kettle corn was awesome.

I just spent $11.95 sending this stuff to Texas at the post office.  I feel like I have the right to complain and take my business (and DH's) elsewhere.  Any suggestions for a new kettle corn source? 

These are a few of my favorite things...

At least, they are Jimmy's.  

Jimmy's obsession with brown food is sort of an ongoing thing, so I thought while I wait for him to drift off, I would share a few of his favorite things.

Chicken Nuggets - I was talking with his therapist and she said she has never encountered an autistic kid who wasn't obsessed with chicken nuggets.  I would concur.  Here prefers McDonalds above all else, though I am getting "I want Burger King" because he knows the Star Trek toys are there*.  (He is sleeping the Zachary Quinto/Spock action figure, but I digress...) Going out to a place that doesn't offer chicken nuggets or strips is pointless, unless it's...

Pizza - Domino's sort of rules this one, as he is a little persnickety in the crust department.  He likes Pizza Hut and I wish I could sell him on it as a standard, as I love their thin and crispy.  Domino's has cheesy bread, which is more gold and less brown, yet still an obsession.  Pizza Hut needs to get something comparable to the glory that is Cheesy Bread.

Chips Ahoy/Oreos - Thank heaven's for Nabisco - you can get them big or small, but the boy loves them.  The only thing that sucks is you can't get them at Costco in the single serving minivan bags, where I usually get Famous Amos (but they were out last time...)

Fritos - This child loves Fritos.  Not any other corn chips, Fritos.  To be honest, he is the same way about Cheetos.  You can't run an Utz past him... this boy knows the difference and accepts no substitutes (if Frito Lay needs an autistic product poster boy, I have got your boy.)

Chocolate Milk - yep, it's brown too.  And Miss Harris gets it down him every single day, God love her.

I wish I could say that there was a fruit or vegetable on this list.  There isn't.  I can get the occasional juice down him or a Dole's fruit cup with his beloved Cheerios.  That's it.  With the advent of gummy vitamins (Scooby Doo's are the chosen ones with both boys), I can at least get that down them.  

* As cool as the Star Trek toys are, I am pissed as hell at Burger King for ditching Cinnaminis.  I loved them and was extremely bitter when I found out Saturday that they were off the menu.

I should have watched SNL last night

Video Recaps | Full Episodes | Webisodes

Happy Mother's Day

Thank you SNL...

To Texas... or not?

My niece finishes high school in a few weeks - her graduation ceremony is Memorial Day weekend.  The plan had been (though it was in flux during the recent flu scare) was that Jacob and I would go down for the ceremony.  I'd come home on Sunday or Monday and my sister would bring him back the following weekend.  Jimmy wasn't part of the equation.  Flying on a plane with him is a major undertaking and extremely stressful - security, getting him to sit through take off (he flips when you put on the seatbelt, until you get airborne), entertaining him for three hours on a plane.  Making it worse would be dividing my attention between the two boys.  I was opting not to bring him.  

But the graduate has asked and I am forced to consider the possibility.  It's not that I haven't done it before with both of my kids - having a week between flights makes the challenge a little more palatable.  But it would be a Friday flight, Saturday, and the likely return on Sunday.  No, I don't have deep pockets - just a family member at an airline.  That brings another challenge in my situation - I fly standby.  I am crazy to consider it.  But she asked.  And my dad's there - he hasn't seen Jimmy in a long time either.  I just don't know.

Michael Savage on the UK's Least Wanted List

Love it... not only is Michael Savage not permitted in the UK (he is listed on a non-admission list under his real name of Michael Alan Wiener) for "fostering hatred," but joining him on the list is Fred Phelps - the pastor who pickets funerals of dead soldiers with signs like "God Hates Fags."  Nice.  Now, on one hand, Britain is really engaging in a form of censorship with this list, keeping out people with objectionable ideas.  But on the other, this is a man who dismissed children with a neurological disability as brats standing along side another who seeks to inflict pain on families of soldiers and others by desecrating their funerals.  Maybe the powers that be in the U.K. are on to something... 

Maternal antibodies increase autistic behavior - Science

Maternal antibodies increase autistic behavior - Science

An interesting article... I am interested in any implication of autism as a or caused by an immune response, given the familial history of autoimmune disorders.

Autism, Vaccines, and the Swine Flu

The discussion about the potential swine flu pandemic and vaccine has started up in autism circles already.  A New York school for autistic kids was closed after an outbreak.  I can't say that I haven't been thinking about this myself.  If you have read this blog for any amount of time, you know I am not of the vaccine school in regards to my son.  I think the onset of Jimmy's autism was tied to the first ear infections and the constant presence of antibiotics in his system for over a year until we hit our first set of tubes.  But the fact that the first area case of swine flu was in a special needs classroom at Rockville High School weighs on me.

If you are a student of American history, you have heard about the outbreak in 1918.  If you read the deeper press coverage today, the pandemic in 1918 and those that have been more recent have been marked by a mild spring outbreak followed by a more virulent fall wave of illness.  I know many are debating getting the flu shot, given than in 1976, the flu shots killed more than the flu itself.  I will opt to get the shot for myself and Jacob.  But this article

and its discussion of Guillian-Barre Syndrome is giving me some pause. I always fear Jimmy getting sick. He can't tell me what's wrong, how he feels, where it hurts. He is a horrible patient, physically combative in everything from doctor's appointments to taking Tylenol. In a virulent outbreak, especially as someone who will not understand concepts like social distancing or even simple things like covering his mouth when he coughs, I fear for his life. But the way GBS is describes, I think I fear that as well, as he is unable to describe any sort of neurological side effect of a flu shot.  It's a double edged sword.

The media has the fear level cranked up as it always does, but I am facing a difficult choice in the fall when it comes to the swine flu.  And it isn't just the shot.  With a child who doesn't understand basic hygiene and personal space, in my estimation, Jimmy runs a higher risk than other children of contracting the swine flu in a widespread outbreak.  I have a few months to figure out what the best approach is to keeping him (as well as the rest of us) safe.  

Mommy Loves Her Boy

He is asleep again.  He crawled into the bed next to me to go to sleep.  Jacob is drifting off to a Thor DVD, but Jimmy always has to crash out next to me.  If I am downstairs, he sleeps on the couch.  If I am upstairs, he usually slides into bed next to me.  The boy is so perfect when he sleeps.  He is pretty much perfect most of the time... okay, that's not true.  But, he is a good kid.  He sat for two hours at Noodles & Co. tonight.  Granted, he had laptop time, but I was impressed.  I wish I could keep him young, sweet, and with me forever.  I do.  It's the one thing you can't predict - what this little boy with autism is going to look like as a man with autism.   What will that experience be for him, for us?  I wish to God I knew.  I think all parents want a crystal ball, but I think many have the luxury of looking forward with more hope and less trepidation.  I am sort of the reverse.  

I was now, but what I really want is sleep.  Good night, all...

A Successful Event...

While it wasn't packed, the stream of friends and supporters was pretty constant.  The event was a success and I would like to thank the many people who took time out to come and eat or get some carry out for Noodles and Company.  It was greatly appreciated.  

Matthew's Center Fundraiser Reminder

Just a quick reminder that tomorrow is the fundraiser to benefit Matthew's Center for Visual Learning's in-home program. The hours are from 5-9 pm. Noodles & Company is located on 9646 Liberia Avenue and the store's phone number is 703 393 9998. 25% of the night's sales will benefit the program. Feel free to tell friends.

Who am I posing with?

I know he is a Steeler and his name is James.  Really nice guy.  Told him all about Miss Harris, my son's teacher.  And the Superbowl ring is very pretty.  But I don't know much else about him.  Linebacker, right?  

Edit:  I figured it out... 

Family claims Chicago police officer beat autistic teenager

Kind of telling that they won't discuss the matter - it's a major screw up, but an understandable one. The article makes the point, that for an officer, the behavior of someone who has a disability in communication isn't dissimilar to someone considered to be a suspect.

By Angela Rozas
Tribune reporter
April 25, 2009

Days after Chicago police promoted their expanded training for dealing with people with autism, a teen with the disorder was allegedly struck by an officer who ignored the family's pleas that he was a "special boy."

While Chicago police refused to discuss the incident, relatives of Oscar Guzman detailed the alleged assault and said it was an example of why more officers need to be trained in handling people with special needs.

Guzman, 16, was standing on the sidewalk Wednesday night, taking a break from working in his family's fast-food restaurant in the Pilsen neighborhood. He was watching cars go by when a police cruiser pulled up and two officers began asking him questions, his family says.

Guzman didn't understand the questions, said his sister Nubia, 25, and looked down, away and eventually began walking away. Diagnosed with moderate autism at age 4, he doesn't like confrontation, his sister said.

The officers went after him, his family said, prompting the frightened boy to run into the family restaurant, yelling "I'm a special boy!" as he fled, his sister said.

Despite Guzman's parents yelling to the officers that he was a "special boy" with "special needs," one of the officers struck Guzman in the head with a baton, cutting a gash that would require eight staples, his sister said. The parents witnessed the blow being struck, she said.

On the ground, blood pouring from his head, Guzman, who has the mental capacity of a 5th grader, mumbled again and again, "I'm sorry. I'm sorry. I submit. I submit," his family said.

The Police Department confirmed the incident is under investigation but declined to give the officers' version of what happened. The Independent Police Review Authority said it is investigating and has interviewed relatives of the boy.

The family said it is considering filing a lawsuit against the officers.

The incident occurred the same week the department promoted its award-winning Crisis Intervention Team, a program to train officers to recognize the needs of citizens with mental illness or disabilities. More than 1,100 of the department's 13,500 officers have gone through the 40-hour training since its inception in 2004. The program has won national praise, and just last month, its leader received a Chicago police departmental commendation for the team's work.

To mark Autism Awareness month, the department held its first Autism Safety Awareness night with the Easter Seals on Monday and sent out a six-page training memo to all sworn personnel on autism and police responses. The department also handed out thousands of index cards with tips on how to handle people with autism and distributed buttons for officers to wear.

The department also now trains new recruits in dealing with people with mental disabilities.

While he could not speak to what happened Wednesday, Officer Jerald Nelson, a member of the Crisis Intervention Team who has an 18-year-old son with autism, said the department has been working to better train officers on how to handle people with autism.

"To recognize it, that's number one," Nelson said. Some characteristics of autism -- avoiding eye contact, not responding to questions -- are the same trouble signs that officers are taught to look for in suspects, he said. But officers could make a situation worse if they don't recognize the difference between suspects and those with disabilities. Touching someone with autism lightly can agitate them, for instance, and certain restraints can even endanger them, Nelson said.

One in 160 children has a diagnosis of autism, Nelson said. Statistics show that officers are seven times more likely to have contact with a developmentally disabled person than the general public.

Colleen Shinn, training specialist and manager of the Autism Program service centers for the Easter Seals Metropolitan Chicago, said the department has made strides in developing autism training.

"I think it's great they're being proactive," she said. "There's more work to be done."

But two days after the incident, Guzman's family says not enough has been done. They want the officers involved fired.

"It's upsetting. Shouldn't they all be getting trained for this?" said Nubia Guzman.

She worries her brother is scarred. Guzman, who never had trouble with police, has cried at odd moments since Wednesday night, his family said.

He drew a picture of the incident, displaying the angry face of a towering officer holding what looks like a bat over a cowering figure. On Friday he described the incident in clipped phrases to a reporter.

"Something terrible happened," the teen said. "One chased me. Killing. Killing unnecessary people. Innocent. Beating people with the stick. It's terrible. ... It's going to heal. I'm all right."

His mother, who was always protective of him and had to be persuaded to let him walk to his favorite Chinese restaurant down the street, said she now fears letting the teen out of her sight.

"This time they hit him. The next time, they may kill him," Maria Guzman said.

Michael Savage shocks Perez Hilton

How Perez is surprised that Michael Savage said this things is beyond me... he called autism a "fraud" and a "racket." Yeah, like my non-verbal seven year old is pulling a con on me. Hearing Savage's name makes me sick. I am still so angry about his comments.

Remember, the list of Savage's sponsors is on the side bar. Feel free to share the love.

Why I am unhappy?

I get that way from time to time. And I have been one pissy lady this weekend. No two ways about it - I have. My kids weren't horrible while DH was in Chicago, but they were none stop. Especially Jacob. By Friday, I thought I lost my check card, reported it missing (I get a new card and new PIN this week), and found it hours later on my bookcase. When I got to National after nearly two hours on the road (it's a forty minute drive), Jimmy was completely out of his seatbelt and Jacob had literally chattered since we left the house. Nonstop. When my head hit the pillow, I was already asleep.

Saturday wasn't much of an improvement. My in-laws showed up to help DH get the theater seating for the mancave. They even bought another section for the room. I couldn't even get excited about it, as I was so burnt out and exhausted. I am a little embarrassed now that I couldn't be more enthusiastic for their visit. Today, DH took Jacob out, but I didn't feel like I could go anywhere, so I was just sort of stuck at home. I wanted to go somewhere that wasn't the inside of my house and I really wanted to do it by myself. So, now I am mentally stuck in this sort of sucky place where I need a break from everything and have no hope of getting it. I am supposed to work on Saturday at the reference desk - I am willing to count that as a break, even though it's work, but that's in jepoardy at the moment because DH is unavailable and I have to nail down a sitter.

I love my family, but I need to recharge a bit.

There's nothing wrong with buying your groceries online, is there?

I just place my first order with Peapod, since I never made it to the grocery store today. There isn't enough time to do everything I need to do on weekends. Is there any shame in it? I sort of enjoyed it. Delivery charges range from $6-10 and after I used this coupon, I get free shipping for the next 60 days. That's enough to get me to the end of the school year. Granted, I have been shopping a lot at Costco, but this has the potential to be a good thing.

The boys are fighting over the Wii. Jimmy is obsessed with Mario Kart and is now refusing to let Jacob play Star Wars Legos. Oh, the drama. The screaming....

Testing a new feature

I love Blogger's new bells and whistles.

Sent from my iPhone

Support Matthew's Center on April 28th from 5-9pm

Hi Friends!

As many of you know, the month of April is Autism Awareness Month.

To honor this month, raise awareness, and give something back to a
program that has really helped my son Jimmy tremendously the past
several years, I am hosting a fundraiser at Noodles & Company to
benefit the Matthew's Center for Visual Learning and their in-home
program on April 28th. 25% of the sales from the hours of 5 - 9 pm
from supporters will go to support the in-home therapy program, going
directly into supplies to assist and benefit the students and their
therapist . The therapists who have worked with Jimmy are a huge part
of the reason he has come as far as he has. The strides he has made
in so many of his daily life skills, from everything from toileting to
eating a wider variety of foods to being able to do the basic things
that many people take for granted like going to the store or a
restaurant, have come from the hard work of his in-home therapists.
Their work has made a profound impact on not just the quality of
Jimmy's life, but ours as a family as well.

Noodles & Company is located on 9646 Liberia Avenue and the store's
phone number is 703 393 9998.

We'd love to have you come to the event, but I also I would love if
you would let your friends and colleagues know. Feel free to forward
on this information to as many people as you can. I will be around most of
the evening and I'm sure the boys will put in an appearance as well.
Staff from Matthew's Center will be around as well to tell you more
about their programs and autism in general. If you have any questions
about the event, feel free to ask. I hope to see you there

More Susan Boyle...

Watch CBS Videos Online

Surviving Night One of Single Parenthood

DH is off in Chicago. Jimmy is down for the count. He has been great all evening. Jacob is a huge pain in the butt. He has been spun up since I got him from daycare. We took Chloe to the vet, as we were concerned about her incision. It turned out to be nothing, but was quite a juggling act to get Jimmy covered so I could make the vet run. She is released from her bathroom prison, so I have everyone in bed with me at the moment. As a matter of fact, Jacob just slipped away to slumber. Yay!!!

Hopefully Jacob will have a better day two.

The Horse Boy

"When Rupert Isaacson decided to take his autistic son, Rowan, on a trip to Mongolia to ride horses and seek the help of shamans two years ago, he had a gut instinct that the adventure would have a healing effect on the boy. Mr. Isaacson’s instinct was rewarded after the trip, when some of Rowan’s worst behavioral issues, including wild temper tantrums, all but disappeared."

This story is really interesting and I think I will definitely read the book.

Mmmm... yeah, I have been there.

Fortunately, our meltdowns are fewer and farther between in the store. Sometimes, however, we don't make it out of the minivan... :)

Parents of autistic children hope for a little more understanding
April 13, 2009 - 7:49 PM
By Sara Perkins, The Monitor

McALLEN - At the moment when her daughter starts moaning and wailing in the checkout line at the grocery store, Veronica Garza could really use a friendly face.

Instead, she says, fellow patrons look on with disapproval and disgust: Another terrible parent letting her child throw a tantrum.

But 5-year-old Alexis Garza isn't screaming for a candy bar or toy. Rather, she's bothered by the crack and rustle of the bags in the checkout line, an intolerably aggravating noise in her sensitive ears.

Lacking the words to tell her mother, instead the lovely, autistic child has what her parents gently term "a meltdown."

"If people could just, you know, give a smile," Garza said wistfully. "Show you understand, you realize - ‘It's OK.' ... That would mean the world to the parent of an autistic child."

Autism, a developmental disorder characterized by difficulty communicating or interacting, is increasingly diagnosed in young children - as many as 1 in 150 - but still poorly understood by many of those whose lives have not been changed by it.

Efforts to boost the disorder's public profile in the Rio Grande Valley have met with some success. Initial struggles with school districts have led to better and better programs to teach life skills to autistic children, who often require frequent repetition and a steady routine. And a group of researchers and parents will hold a walk for Autism Awareness Month on April 25 at McAllen Memorial High School.

But outside the support groups and special education classrooms, Garza said, there is still too little tolerance and understanding for parents.

"We've come a long way on the discrimination factor," she said. "But at places like H.E.B., they give you looks, like, ‘Control your kid.'"

Never ever judge a book by its cover...

I have watched this three times now. It leaves me overjoyed and in tears every time. Susan Boyle is fabulous! I hope her dreams come true!

An autism PSA from Jimmy's favorites...

A Thoughtful Spinaweb OpEd by Alex Granados

Click through to the link. Spinaweb is a local vocational program that is facing cuts in the current economy at the hands of the county. He really looks into the issue of the cuts and how deep they go, but he also has a personal take on it, discussion his experiences with his aunt, who has Down's Syndrome.

Alex did the first article on Jimmy in the Manassas Journal Messenger. He followed us around off and on for a week or two and got the Jimmy experience first hands. Since then, he has attended a birthday party and several career days at my school and is just an all around great guy. I almost like him as the editorial page editor more because I see a lot more of him - his ideas and opinions - in it. For those local folks, he makes the editorial page really worth the read.

VH1 Classic Rocks Autism

So the DH and Jacob are watching the VH1 Classic show Heavy and their Rock Autism commercial comes on. It's always amazing that they start with the stat of 1 in 166 - any parent with a kid with autism knows that number. Actually, sadly, it is a little dated, now hovering at 1 in a 150. But it is very gratifying to see people who's music you grew up with out there raising awareness for your child and his illness, his disability. Jacob was excited to see KISS in the ad - I think he wants to join the KISS Army someday.

Thank to VH1 and its many artists for supporting kids like Jimmy.

Why T and I are bad together?

She introduced me to Petunia Pickle Bottom - granted, it is heavily marketed to new moms, some of those bags are cute. I have a pair of shoes that would be just perfect with this...

Jacob's favorite ad...

Playing with Twitter...

I signed up with Twitter and I am now playing with it for the blog... You can keep track of me and my mundane existence on the sidebar.

Go to Ask.com to raise money for Autism Speaks...

Go to Ask.com and add an autism skin to your Ask.com page view. For each skin in use, Ask.com will give money to Autism Speaks. Additionally, you have the opportunity to answer 16 questions about autism and accumulate points. For every point you earn, Ask.com will contribute 1 cent to Autism Speak's work for autism awareness and research for a cure. Please check back often and keep earning points. Autism Speaks - It's time to listen!

Washington Post OpEd :Still Overlooking Autistic Adults

Still Overlooking Autistic Adults
By Linda H. Davis
Saturday, April 4, 2009; A15

Question: What coming social expenditure will cost more than a third of this year's budget for the Department of Health and Human Services and be larger than the entire current budget of the Energy Department?

Answer: The bill for the tide of autistic children entering adulthood over the next 15 years, an estimated $27 billion annually in current, non-inflation-adjusted dollars by the end of that period. The number of autistic children expected to need extensive adult services by 2023 -- more than 380,000 people -- is roughly equal to the population of Minneapolis. If a town were created to house this group of people and their caregivers -- for you can't separate the two -- it would exceed the population of all but six U.S. cities. If they formed a state, it would have four electoral votes.

But most of these cognitively impaired citizens don't vote. Most of them can't live alone or work in public places. Many can't even take public transportation by themselves.

Yet as World Autism Awareness Day passed this week, with the wrecking ball swinging at all levels of social services in this devastated economy, the challenges of adult autism continue to be overlooked. Many news reports focus on whether vaccines cause autism, the need for a cure or the education of autistic children. Autistic adults are relegated to the sidelines. Even the Obama administration, which has pledged better care for disabled Americans, including those with autism, has not been specific enough about its plans for those who will probably never be able to live independently or be part of the traditional workforce. "Improving life-long services for people with ASD," as autism spectrum disorder is known, is a worryingly broad, detail-free promise in the White House agenda published online.

I understand that no one wants to look at a child and imagine the clunky, in-your-face adult he or she will become or think about the stares he or she will induce. When I look at my pudgy 22-year-old son, Randy, still sweet-faced but so obviously disabled, I cannot locate the blond cherub he used to be, gripping his stuffed brown bear. While writing this, I listened to Randy getting into the refrigerator (he's home again from his supervised job -- two mornings a week -- because of another problem with the overwhelmed human services provider funded by the Commonwealth of Massachusetts), and wonder who will love or at least protect him when he ends up in a group home run by an underpaid, overworked staff.

Randy's father and I are keeping him at home as long as possible, even as I'm battling an incurable cancer. The inadequate state services and perilously thin funding have seriously hampered our ability to work while caring for our son. I feel as though we're playing Russian roulette with Randy's future, yet I cling to my gentle son, unwilling to entrust him to a system that grows more fragile than I do.

Randy is just one of hundreds of thousands of autistic adults to whom society pays frighteningly little attention. The price of their care will affect all Americans, not only those who have autistic children. Along with housing, day programs, transportation to those programs or jobs, and higher-than-average medical costs, adults with autism require steady supervision and support. Consider: A well-behaved, relatively high-functioning person such as my son could manage in an environment that has a ratio of three clients per staff member. But many autistic people require a one-to-one ratio. This is a serious hurdle, not least because of the high turnover rate among those who provide direct care, which stems in part from their low wages. Not everyone is temperamentally suited to this work. People with autism present myriad challenges: They can sometimes be violent, sometimes are self-abusive, suffer psychological meltdowns, or behave in many socially unacceptable ways, to say the least. Women, traditionally cast in the caregiver role, are at risk of greater physical harm when caring for autistic adults than for children. At expected rates, we will need to find an additional million caregivers, people who must have the right personal qualities to work with autistic individuals but who are willing and able to work for low wages. This is no small challenge. We not only must train people but also show that we value this work by paying them better.

In 15 years, the cost of care just for the autistic children entering adulthood over that time will be about equal to the current state budget of Tennessee. Meanwhile, services are dangerously strained, and the influx of autistic adults is underway. This country urgently needs to focus on adult autism, new models of care and new sources of funding. Before the looming tidal wave delivers another crushing blow to our economy, we should have a national discussion. It should begin today.

Linda H. Davis is the author, most recently, of "Charles Addams: A Cartoonist's Life" and is president of the nonprofit SAGE Crossing Foundation, formed to create a farmstead for autistic adults. Her husband, Chuck Yanikoski, who is treasurer of SAGE, contributed to this piece.

More articles related to MHC and autism...

My dad's response to his little homework assignment... His isn't a doctor, but an extremely well read PhD, who was pre-med for his first few years of college. I wouldn't let him operate on me, but I think he understand the terminology and the theory behind medical scholarship.

"I read through the article. It suggests possibilities that are quite interesting. However, it is extremely technical. You might try the following.

I conducted a search of Google as follows:

Search terms: autism "HLA-B27"
This yields the following results:
HLA and Autism
www.springerlink.com/index/735K31284L316446.pdf
Autism and Lyme
www.canlyme.com/autismlyme.html
etc.
I suggest you read some of the articles. Perhaps you have hit on something important. While there is no cure at this time for diseases associated with HLA-B27, it may be possible to effect some improvement, even reversal, through development of stem cells that modify the histocompatibility antigen."

An article about the American vintner in Japan

(06-17) 04:00 PDT Ashikaga , Japan -- Bruce Gutlove was working as a wine consultant in St. Helena in 1989 when he got the call that changed his life forever, even though at the time he said, "No, thanks," and hung up.

Gutlove's friends, Matt and Fred Cline from Cline Cellars in Sonoma, had sold some grapes to a school for mentally disabled people in Japan, and had visited there to see how they planned to make wine. The Clines made some recommendations to the school's founder, who asked if they knew someone who could help make the necessary changes.

"My name came up. I'm not sure why," says Gutlove, 42. "Maybe it's because my friends thought I should spend time in a mental institution in rural Japan."

After Gutlove said no on the phone a couple of times, the school sent someone to meet him in San Francisco. He was moved enough by the interest in him to agree to help with one harvest at the school, which is located about an hour north of Tokyo by train.

"I liked what I was doing in Napa," says Gutlove, who had worked at Cakebread Cellars, Robert Mondavi Winery, Trefethen Vineyards and Merryvale Vineyards before going into consulting. "I said I would stay for six months."

He's been there ever since.

Gutlove was impressed by the mission of Noboru Kawada, who founded Cocoromi Gakuen near the city of Ashikaga in 1969. Kawada wanted to give mentally disabled Japanese a future beyond the way society then usually treated them -- by "giving them a lot of drugs and putting them in a room somewhere," says Kawada's daughter, Chieko Ikegami.

Kawada and Ikegami put their "students" -- most are adults, but Cocoromi is officially a school -- to work on clearing the hill behind the facility to grow grapes, as well as on various other agricultural projects.

"It's a good life lesson," Ikegami says. "You work hard all summer and you can taste the fruits in the fall."

A classroom in the fields

The school teaches students to be more self-reliant and agriculture is a big part of that. One goal is to move students into off-campus apartments. The school now has 90 students on campus and another 40 in Ashikaga in group homes.

In 1984, Coco Farm and Winery -- the name is short for "Cocoromi" -- was formed as a separate company for legal reasons, because a school cannot sell wine. Coco Farm has a vineyard right behind the facility where it grows grapes with student labor and it also buys grapes. Coco Farm, which neighbors the school, also grows and sells shiitake mushrooms.

Coco Farm has 20 full-time employees, most of whom are not mentally disabled. The students do all the remaining tasks and are paid for their work.

"Sometimes we'll have 40 students in the vineyard during harvest," Gutlove says. Before he arrived, there was no true winemaker.

Gutlove moved into a dormitory with the students in 1989 and quickly learned their idiosyncrasies had both advantages and disadvantages.

"Harvest is a bit chaotic," Gutlove says. "You're carrying 8 kilos (about 17 1/2 pounds) down the hill. Someone will fall and roll down the hill and knock over the next person, and they'll fall. Grapes go everywhere."

However, he and Ikegami say there are no better workers for some of winemaking's more monotonous jobs.

"If you give a student a task, once they understand it, they never get bored," Ikegami says. "One boy stands on the hill all day long waiting for crows. When a crow comes, he rings a bell."

In bottling, at first Gutlove was frustrated by workers who would label every bottle upside-down, or make a small tear in the same corner of every label. But then he learned to find the right person for the right task.

"They have a lot of endurance," Gutlove says. "They'll pull the bottom two leaves off every cluster. It's very boring, very repetitive. They do it with enthusiasm."

Gutlove says the students are also superb at quality control, watching 2, 200 bottles go by per hour and catching any one that contains minute amounts of cork dust.

"Two students go through 150 to 200 tons of grapes a year, taking out even the smallest amount of rot," he says. "They're very good at it."

Ikegami says it's difficult to get the students to take a day off because they love to work. And she says with their money, they often buy Coco Farm wines, which are available in local stores as well as some stores in Tokyo, and by mail order. Today they hold their own against other Japanese wines, which are generally a sorry lot.

But community spirit was the reason most people bought Coco Farm wines when Gutlove arrived. He says he and Kawada made an early agreement that "we would not use the fact that mentally disabled people were making it as an excuse for poor wine. (Kawada) was happy about that."

Japan's weather has long frustrated attempts at growing world-class wine grapes. Beyond cold winters, humid summers that don't cool off at night, high winds and year-to-year unpredictability, there's a month-long rainy season in the middle of summer that both drenches the vines during flowering season and fosters a cornucopia of mold.

"If you look at the data on humidity and temperature, this is not like anywhere else," Gutlove says. "The most immediate thing I can come up with is the East Coast of the United States, from Virginia to Missouri."

Moreover, Japanese consumers are willing to pay high prices for table grapes, making wine grapes an uninviting proposition for most farmers.

Quality of grapes was poor

"When I first got here, I couldn't believe the poor quality of grapes," Gutlove says of fruit Coco Farm bought from outsiders. "Not ripe, ripeness was uneven, rot. After the first harvest I went down and talked to the growers. It was not a pleasant time. Finally I came to understand they were growing only table grapes. The ones that weren't good enough to be table grapes, they were selling to us as wine grapes."

Gutlove says he told a group of farmers to reduce their yields, change varieties from Cabernet Sauvignon and Merlot to something better suited to the weather and spend more time in their vineyards pruning and fighting rot.

"They took my translator aside and said, 'Take him out of here,' " he says, laughing.

Though he has a bachelor's in plant physiology from State University of New York-Stonybrook and studied in the master's program in enology at UC Davis, Gutlove says his focus in California was always winemaking, not grapegrowing. However, after he met his wife-to-be, Ryoko, at a party in Tokyo in 1991 and realized he would be spending more time in Japan than he thought, Gutlove began seeking grapes that would adapt well to Japan's weather. He also moved out of the school dormitory.

He currently makes sparkling wine with a blend of Riesling Lion, a hybrid grape developed by the Suntory Group beverage company, and Koshu, a grape unique to Japan that is well-adapted to the conditions yet neutral in flavor. Though expensive at 6,000 yen per bottle ($55), the 1998 Novo demi-sec sparkling wine is Coco Farm's best product, crisp and yeasty, with high acidity balancing the 3 percent residual sugar. An earlier vintage of this wine was served at a G-8 Kyushu-Okinawa Summit in Nago Cityin 2000, the first time a Japanese wine was served at such an occasion, Gutlove says.

Coco Farm's best still wine is made from Kerner, a hybrid grape grown in Germany and Austria that Gutlove says was created in the 1950s. The 2002 Cocoromi Series Kerner ($18) smells and tastes fresh and grassy, with a hint of tart apple -- like a Sauvignon Blanc without the mineral notes.

Winemaker can experiment

Among the winery's 15,000 cases of wine produced per year, Gutlove also makes wine from oddities like Muscat Bailey A, a hybrid of red Muscat with the American table grape Bailey. He's experimenting in the hillside vineyard beside the school with the Missouri red-wine favorite Norton, as well as Tannat, which seems the most promising. The wines are hit-or-miss. But though he says he misses Napa Valley, not least for the quality of grapes, Gutlove says he has no plans to move on soon.

"I've been asked time and again why I'm still here," he says. "It's the students and the teachers. Just to see the way that they work. The energy and enthusiasm they put into it. Winemaking has consumed my entire life. Everything about it I love, on so many levels. In my darker times I think it might be self-indulgent. I was raised in a Christian family. To be able to be involved with something like this is perfect. To be able to do what I love and help people overcome obstacles."

After all, Cocoromi means "challenge."

Though Gutlove would like to find U.S. distribution, Coco Farm wines are not currently available here, but the winery is open to visitors in Japan. For information, go to cocowine.com.

I have to find some of this wine...

A winery in Japan staffed entirely by autistic and developmentally disabled adults.

For Becky and Dad...

Read and comment...this is an article on MHC (an autoimmune code on DNA, if I understand correctly) and autism. Most of my family carry a set of abnormalities in this area. DH and I went to dinner and we rehashed Larry King and all of the potential causes. After three glasses of wine, I guess this is my idea of fun.

So I am watching Larry King with Jenny McCarthy and Jim Carrey...

I think I am finding the whole panel on both sides annoying. I appreciate the work that Jenny McCarthy has done in raising awareness, but I think the singular focus on vaccines reduce the funding available to other causes and environmental triggers to the genetic component. When every discussion on autism devolves into a debate about vaccines, it depresses me, like there is no hope for better treatments or cures for Jimmy. I think there is a genetic component and an environmental trigger - saying there is an autism shot is an oversimplification.

(Oh, and Dr. Bernadine Healy comes off as entirely too smug on TV. She needs some media coaching, because she smiles too much and comes off as condescending. It's offensive.)

Progress is Slow in the War on Autism

A great overview of how things stand now...

"Aside from doing the morally right thing, Jane Searing said, funding more programs for adults with autism makes economic sense.

"If you get them employed, you won't have to pay for them forever," Searing said, adding it's much better to "turn these people into taxpayers instead of tax takers.""

This is an interesting note, especially in light of the cuts that Prince William County is trying to make in vocational rehab programs like Spinaweb in the current budget crisis. Yes, it saves the county money, but it only passes along the cost to the state and federal tax coffers to support adults with developmental disabilities. Not to mention the sense of purpose these adults get from working...

Autism parents' plea: Understand kids' meltdowns

I can't tell you how much a part of the experience this is for parents, the constant stares and judgment that come along with taking your kid out in public. It is truly hell on earth. You feel like a freakshow. As Jimmy has gotten older, I can honestly say that we go out less. Once he got too big for high chairs and Jacob got willful and mobile, it just became too much. With all the therapy that we have done, he does better in restaurants and such, but it is still a trial.

By Madison Park
CNN

(CNN) -- Heather Moores and her 4-year-old son, Julian, sat in a waiting room at a pediatrician's office.

Julian, who has autism, was goose-stepping and counting every coat hook on the wall aloud. He started roaring like a lion. Moores smiled at her son, then noticed the horrified looks on other people's faces.

"People do not understand," she said. "To them, as bizarre as his actions might look, for us, they're a blessing. For us, it means he's enjoying himself and happy. No one understands that. They just see an out-of-control child. They don't understand this is a good day, when there isn't screams upon screams."

On the second World Autism Awareness Day, the search for a cure continues, and major court decisions have helped sort out the theories connected to the mysterious developmental disorders. Public knowledge and acceptance of autism and the difficulties the families face may be growing, as some iReporters told CNN.

But that's little comfort to a parent whose child's behavior can range from quirky to violent.

Children with autism have unexplainable breakdowns -- their outbursts are often loud, aggressive and disturbing. Julian slams himself against the ground or wall while he screams, flailing his limbs. Julian's younger brother, Marcus, 3, squirms away from his parents and runs into the street to oncoming cars because he is fascinated by them. He also screams with such ferocity that his face turns purple and mucus bubbles from his nostrils. Their youngest brother, Aric, also has autism and just turned 1 year old.

Heather Moores remembers that the stares in the waiting room were full of contempt. Onlookers shook their head in disgust and glared, making her feel like the "world's worst mother." This happens every time they go out to the doctor's office, the barber shop or anywhere in public.

"You'll hear people talking, 'If it was my kid, he wouldn't behave like that. These parents don't know how to discipline their children. Why don't you shut that kid up?' said Alexandre Moores, Heather's husband. "It makes going out unpleasant. I don't know if you ever get used to it."

Autism spectrum disorders affect the ability to communicate and interact. Many with autism have repetitive movements like rocking or hand-flapping and become set in their daily routines. Anything unexpected -- even a sound -- can result in major meltdowns.

"The reason why toddlers have tantrums is they don't have verbal or cognitive skills yet," said Dr. Lisa Shulman, an associate clinical professor of pediatrics at the Albert Einstein College of Medicine in Bronx, New York. "They have no control to navigate difficult situations using their social and communication skills. That inability to communicate can set off such behaviors in toddlers."

Their odd behavior draws unwanted attention. Marcus walks on his tiptoes and amuses himself by dumping liquid from sippy cups and containers. Julian counts everything aloud, over and over again.

"People are always staring and because the children don't show any type of physical abnormality, like someone with Down syndrome would show; people kind of assume that you're a bad parent," said Alexandre Moores

When the staring and critical comments become too overwhelming, Julian's mother tells the onlookers that the children have autism.

"You're in a situation you have to explain your kids, because you can't take the looks," she said. "It gets really, really hard. No one seems to understand where you're coming from." Read Moores' iReport submission.

To prepare for outings, parents should bring a favorite toy or plan ahead to reduce waiting time. But don't avoid going out, Shulman said.

Parents should have a pat answer to say to a nasty face maker, she said. "It should be something they feel comfortable with, about this invisible disorder. 'This is what autism looks like. My child has disability.' They're not obliged to engage in conversation. Make a statement that's heard and move on."

Moores said the most helpful thing the public can do is withhold the judgmental looks and reassure the parent with a smile when they encounter a child having a public meltdown. Critical comments are "very, very painful and very depressing," she said.

"Please try to understand parents of special children are going through living hell 24 hours a day," she said. "Even if you are confused and you don't know what to do, give that parent a reassuring smile. That's the absolute best thing you could do."

It's a familiar experience for Laura Shumaker who remembered the scorn of strangers whenever her son had a public meltdown. Autism was not well-known when her son, Matthew, now 22, was growing up.

"When I look back, there are people who judged me," she said. "There were just as many that were compassionate, who could see I was trying my best."

Four years ago, she and her son were flying home to Northern California from Philadelphia, Pennsylvania. At the airport, Matthew learned they would be flying on US Airways instead of their usual United Airlines.

This greatly distressed Matthew, who started hyperventilating.

Shumaker walked to the U.S. Airway ticket counter as Matthew rocked behind her nervously, mumbling, "United is friendly. US Air is not."

Under her breath, Shumaker whispered to the ticketing agent that Matthew had autism. Then in a louder voice, she said, "We'd just like to trade these in for United tickets," and winked.

The agent paused for a moment, glanced at Matthew and said: "Oh! Well, don't worry, because US Air and United are the same now...really. We merged. We're the same airline now."

Strangers in line chimed in. "That's right," said a man standing behind them in line. "And the skies are still friendly."

Hearing those reassurances, Matthew stopped hyperventilating and began breathing normally. Before leaving for the US Airways gate, Shumaker hugged the ticketing agent in gratitude. Read Shumaker's iReport submission.

"So many children are diagnosed, there is an awareness now," she said.

But it's still difficult to explain to others, Shumaker said, when Matthew comments at the supermarket that a person standing in front of them at the check-out line is too fat to buy ice cream.

We're not dead...

I know it has been a long time between posts. I don't think I have ever had a break that long. March was a completely overwhelming month. The school board stuff kicked my butt mentally, I had strep, an ear infection, and a sinus infection - all at the same time. Jimmy got a urinary tract infection and head lice. DH continues to have back problems from the car accident. Jacob is the only one to weather the storm. I apologize for my absence.

We had Jimmy's IEP meeting yesterday - I can't believe it was scheduled on April Fool's Day. I was able to maintain all of his services next year. Sadly, we are going forward without his teacher, who is moving back home to Pittsburgh. I would have been lost without Ms. Harris (who am I kidding - she's Allison to me) the past two years. As sad as I am to lose her, I am intrigued by what she is doing next - vocab rehab sounds like where she is going. Instead of working with kids now, she is going to help create a future for them as this Autism Generation ages into adulthood. Without vocational opportunities, when these kids age out of education at the age of 22 (under IDEA I believe), so many take up residence on the couch. Allison is going forward to create opportunity for children with special needs in adulthood. For that reason and so many others, she goes with my blessing, love, and respect. She has truly been amazing.

Today is World Autism Awareness Day. Of course, I will post a few stories, but I think it gets a month in the US. I am doing my best to honor it here in Manassas by having a fundraiser to support Matthew's Center for Visual Learning at Noodles & Co. on Liberia Ave. on April 28th from 5-9 p.m.. Noodles gives a sizable donation based on sales, so I would love to see everyone there.

I promise to get back on track with this. Now that the summer is becoming a light at the end of the tunnel that is the school year, I really hope to do some work on video with Jimmy and other fun blog stuff. Hey, I get Spring Break next week. I should be good for at least that much.