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.