UPDATE:  Another study, released in March 2013, has determined that vaccines DO NOT cause autism. 

So please consult your pediatrician for your concerns, and as long as your child is not one of the very, very small minority who will be injured by vaccines, get your child vaccinated!!!!

____________

I’ve always wanted to know how other countries fare with their vaccines and autism stats.  I came across this special_report_autism2 today from Generation Rescue.

It seems pretty well documented, and I think offers some legitimate concerns as well as the obvious need for more research, research, research.  (It was published in April 2009, and the rates for autism have now increased to 1 in 100 in the United States.)

Hopefully one day we will have some definitive answers.  In the meantime, can’t we vaccinate 99% of our population to provide herd immunity to babies and the elderly, while also protecting the small percentage (1%, maybe) of children who are prone to vaccine injury because of susceptibility to auto-immune disorders, as well as neurological problems?  Why can’t we protect everybody?

Of course it raises many questions (why such a huge variance in the number of Autism rates country by country?)  I’d like to know what Norway and Denmark are doing right.  And why oh why does America’s rates spike so much higher than any other country?  We’re supposed to be the best country in the world!  I just don’t get it.

Country # of Vaccines (under 5 yrs old) Autism Rate Mortality Rates Per 1,000 children under 5 yrs old Mortality Rates Worldwide Ranking (#1 being the fewest deaths)
United States 36 1 in 150 7.8 34
Iceland 11 1 in 1,100 3.9 1
Sweden 11 1 in 862 4.0 2
Japan 11 1 in 475 4.2 4
Norway 13 1 in 2,000 4.4 5
Finland 12 1 in 719 4.7 6
France 17 1 in 613 5.2 11
Israel 11 1 in 1,000 5.7 17
Denmark 12 1 in 2,200 5.8 18
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1 in 100. Yikes.

January 16, 2010

The CDC released its latest autism figures just a few weeks ago (December 18, 2009).  Their current findings indicate that Autism Spectrum Disorders (Autism, Asperger’s and PDD-NOS) now affect 1% of children in the US, or 1 child out of every 100.  This shows an increase of 60% from 2002 – 2006.

Yikes.

David Kirby of the Huffington Post, conducted a phone interview with Dr. Thomas Insel, Director of NIMH and Chair of the IACC (Interagency Autism Coordinating Committee) to interpret the CDC’s findings.

The highlights of his interview are:

1.  Better diagnoses do not explain this huge increase.
2.  The causes are both genetic and environmental.  “There is no question that there is an environmental component here.” – Dr. Insel.
3.  Finding environmental exposures that trigger autism are essential in order to decrease the epidemic.

Let’s hope those in positions of power and science and medicine can figure the solution out.  Soon.

I used to love sleeping. Especially when you can fully stretch out and most especially on clean sheets.

Now I have at least one night a week of sleep interrupted.

It’s that kind of interruption where you wake up, sometimes in a panic. There’s a problem, and I have to fix it. How do I fix it? Oh yeah, I can’t. But the worry remains, because the problem remains.

Hamhock is attending preschool this fall. It’s in a neighboring school district (Granite) and will be mostly neurotypical kids with a few extra-needs kids with IEPs.

I’m terrified.

Considering his social skills consist mostly of hitting, pushing, shoving, grabbing, and yelling, well, no wonder I’m terrified. Basically the entire year will be focused on helping him develop some appropriate social skills, with the goal of not terrifying other kids in his class.

It’s hard when he physically doesn’t appear to have any disabilities – because it doesn’t engender sympathy as a first response. Think about it. When you see a Downs Syndrome kid, you immediately understand that something is amiss. When you see my kid, you think his parents don’t know how to discipline, or that he’s just being a jerk.

The worst combo is when my kid is terrorizing the Downs Syndrome kid. I’m not joking. He was in an Early Intervention play group twice a week when he was two, and I was terrified of leaving him there with a really sweet Downs girl. He did get close a couple of times, but no major damage was inflicted. Whew.

On May 27, I was horrified to hear about Alex Barton being voted off of his Kindergarten class; any parent, whether with a special needs child or not, cringes at the thought of their child having a traumatic social experience in the schoolroom or schoolyard.

Along with hundreds of concerned parents, I sent an email to the administration and teachers, as well as St. Lucie’s mayor:

———- Forwarded message ———-
Date: Tue, May 27, 2008 at 10:44 PM
Subject: Ms. Portillo’s Terrible Decision to “Vote” a Child out of Class

Ms. Portillo, Ms. Cully, Mr. Lannon, Ms. Hilson, Ms. Miller, Mayor Christensen, Ms. Hanna, Ms. Campbell, Ms. Constantine and Ms. Spurr:

I am shocked and horrified at the events surrounding Alex Barton being “voted” and “kicked out” of his kindergarten class led by teacher Ms. Wendy Portillo. This incident is so horrific on so many levels, it is difficult to simply articulate a response.

Public school education is a right, protected by law. Children with developmental and other disabilities are protected by law (IDEA 2004) to have access to an appropriate public school education.

How could ANY public school teacher set an example to others of ridiculing a 5 year old child in this manner, and then allow the children to provide such negative and destructive feedback, especially to a child who has social delays and difficulties? Not one of them has the authority to decide where he should or shouldn’t receive his education.

Ms. Portillo will recover from her temporary removal from the classroom; but Alex Barton is forever changed by this one incident in her classrom.

As a mother of a child with an autism spectrum disorder, I fully understand the frustration surrounding behavior difficulties of children with ASD, especially when they are in large structured groups. It sounds like not only did Ms. Portillo fail him, but also the special education department for not providing a more structured and supportive classroom setting for him, as well as the administration for failing to support Special Education efforts for this child.

Now is the time for you to change your practices and policies. Now is the time to make right a horrible event under your watch.

———–

Another story that keeps me awake at night. . .

Oh. My. Word. Of course I don’t know all of the details of this case; and especially how much or how little the family was trying to work with the church’s leadership, but again: Oh. My. Word. A restraining order? Any parent of a child with autism already feels aliented, so to have that feeling of alienation legally cemented by a restraining order??

Hamhock has hit other children at church. He runs all the time, completely unaware of other parishioners, and 75% of our congregation is over 70! He loves to spit at other kids and adults. The only thing he hasn’t done in the church that this autistic boy is accused of doing is pee, but I’m fairly certain he has peed in the bushes on the church grounds after services.

Now, Foo & I follow him around everywhere he goes. We don’t let him out of our sight, unless he’s in his Primary Sunday School class, and even then we keep tabs with his teacher. Sacrament services are still a challenge, and we’re usually in another room or roaming the halls. We’re cognizant of other people; for of course everyone has a right to worship in a spiritual manner. But I can just relate to this mom wanting to have some semblance of a normal family experience at church, when there is probably very little in our lives that feels normal.

I’m sitting in the children’s section at Barnes & Noble leafing through a newly published, oversized book called Autism Heroes. Superboy is so cute and playing with the Thomas the Train set. Hamhock is at home in an ABA session with Anya.  The book profiles stories and has great photography on various families throughout the country who face the challenge of autism in their lives.

I flip open to the first family’s story and I see Gary Cole looking right at me. You remember Gary Cole – the office manager in Office Space, Mike Brady in the Brady Bunch movies? His daughter has autism. I keep reading and finally flip to the back of the book where I see John Schneider. His picture is a great snapshot – he’s sitting down with his pre-teen daughter on his knee, his wife is standing next to their son who has Asperger’s, and the smile on John’s face is so happy, so natural. Anytime I see John it reminds me of those lazy summer days in the 80’s watching Dukes of Hazard, and I choke up with regularity watching early seasons of Smallville when scenes show John and Martha raising Clark as their son through adoption (albeit alien adoption from Krypton).

Both actors are very open about their children living with autism; they both work with non-profit organizations: Gary works with the Help Group, and John is on the advisory board for Actors for Autism.

It’s crazy to me that when you see a celebrity in a personal situation that you kind of feel like you know them. But you’ve never met them, and the people they portray are just characters, oftentimes absolutely nothing like their true selves. That said, there is some sense of familiarity when you see their face.

Last night I went to my niece’s ballet recital at the U (so freaking adorable; and she did great!), and as I was weaving around the parking lot looking for a space, my eyes were drawn to all the families going to some game at the stadium. Of course, the lack of sleep and constant emotional state I’m in, made me start crying whenever I spotted a family with kids about Hamhock’s age. I can’t imagine just taking him to a game, holding his hand while we all walk there together, anticipating a fun event. No. Everything we do has to be planned in advance, we can’t take him to most normal places you would take a 4 1/2 year old to.

I have to keep believing that someday, someway, somehow we’ll get there.

I am positive that is exactly what another mom was whispering about me to her husband at the Children’s Museum yesterday.

As I tried to inch closer so I could make out what she was saying, she stopped talking and moved away, so it pretty much confirmed that was exactly her topic of conversation. Then they quickly left the area.

Yes, I’m a little mad.

I was already thinking of things I wanted to say to her, but they all involved using Jenny McCarthy language (i.e. the “f” word), so I refrained b/c that’s just not cool, especially around kids.

What happened, was this: We went out to play on the helicopter. Hamhock jumped to play in the cockpit with another boy about age 5. There were no other kids waiting in line, and Superboy was playing inside the cabin of the helicopter.

The other 5 year old boy started shouting into the intercom to his friend in the control tower “shut up” and other such boy shouts. Well, Hamhock LOVES to say shut up (for any UCB fans, think:  Matt Walsh in the Shut Up Sketch), so he was all over this. He starts shouting “shut up” with the boy and the boy was really sweet and played with him, too. It was really cute. I was watching this whole interaction thinking, if I were a “normal” mom, I would tell my child to not use that language. But, I don’t have the luxury to be a “normal” mom. I was glad that Hamhock was communicating and interacting with another kid, and that the kid was sweet and could relate on his level. Most other kids just stare at his lack of verbal/social skills and walk away. This kid definitely was having fun shouting into the intercom, and welcomed the attention Hamhock was giving him.

Foo & I have tried in vain to help Hamhock say other words instead of “shut up” but nothing has worked. This is a kid who has barely been speaking a year ago. He definitely doesn’t understand the subtleties of language, why you would say one thing but not another. So we just ignore the behavior, not drawing any attention to it, hoping that it will be a phase that will disappear as he learns more.

So, I was standing there I admit in a bit of a stupor, partly mesmerized by the interactive play, and partly mesmerized by my lack of sleep all week. All of a sudden I noticed a mom standing next to us who began to steer her daughter away from the cockpit while saying: “We’ll come back in a minute to play in the cockpit.” I didn’t notice how long they had been standing there, wanting to play in the cockpit, or I would have had Hamhock move. She also didn’t ask whether her daughter could have a turn.

Shortly thereafter several other kids came to play, so I had Hamhock sit in the middle while other kids had a chance to sit in the two cockpit seats. No one else had a problem, and other kids were getting their turns.

Finally, Superboy had his turn in one of the cockpit seats, and as soon as I noticed a boy who wanted a turn, I picked Superboy up to let the boy have a chance. Superboy’s seat was empty, Hamhock was in the middle, and some other kid was sitting in the first seat. Well, this mom didn’t see me make room for her boy, and she said her boy something like: “this mom doesn’t know how to share” and then she walked away. She was so intent on complaining to her boy, that she couldn’t even hear me telling them the seat was open. I almost shouted to the boy while pointing to him, and he finally looked directly at me and then immediately ran over to the cock pit seat, while the mom huffed off.

That’s when I saw her gossiping to her husband about what a terrible mom I am. I inched closer so I could somehow have an opening to explain what was going on (minus the “f” word). But she and her husband scuttled away before I could.

It’s just as well. When I’m tired, I cry a lot easier. That’s the last thing I want, to be a blubbering mess at the helicopter in the Children’s Museum.

The Wall of Autism

May 21, 2008

. . .stops me cold.

For example, you try to engage Hamhock in conversation about something you’d like to talk about, or think he might be interested it.  He doesn’t respond, ignores you, or plays with something else.  You stop trying to engage him about that thing and roll with what he’s interested in.

It’s good to take his interests and expand on them, and many therapy protocols teach you to do just that.  But what happens when you try to bring him into your world, introduce him just a bit to something new, and try to bridge that gap between his world and ours?

Well, it’s the Wall of Autism.

I realized this in Foo’s & my discussion with Scott our RDI Consultant last Thursday night, learning about dynamic conversation.  Most conversation takes on a declarative format; you say something – throw it out there, and expect it to be picked up and responded to someway, somehow.  Only maybe 20% of natural communication takes on an imperative format, where you actually directly TELL someone to do something.

Scott made the comment that our parenting styles have picked up coping mechanisms to compensate for Hamhock’s social/language/communication delays, and we inadvertently may be reinforcing those autistic static tendencies in Hamhock’s communication, rather than trying to teach and help him learn more dynamic ways of communication.

I realized then that I give Autism what Autism wants.  

It’s just easier to let Autism have its way.

In our free play time, I realized I’m not naturally the mom who requires her son to push through and do what she knows is best for him.  Mostly because I’m not sure HOW to do that.  I spend most of my energy working for, paying for, hiring for, planning for, buying supplies for, managing tutors for, and managing programs for his ABA program, that I realized I didn’t learn other techniques during our free play time. (Although, shouldn’t it be just that:  free time?)  Of course I buy the crafts, the games, the toys, and we go to the Children’s Museum, the park, or store. But that’s not enough.

For example, what mostly happens during our free play time is this:  Hamhock has his idea of what he wants to do.  He wants to involve us in that idea, as far as his requirements go, and as far as we can be “tools” to achieve those requirements.  This ends up in me dragging around Superboy, following Hamhock around as we literally troll the neighborhood.  Ask my friend Karen, her mom lives across our street, and she sees the trolling in action.

Yesterday I put the bike seat on the back of my bike, thinking maybe we could bike around and have some fun with Hamhock’s new Spider-man bike.  For the first 15 minutes, it was OK.  We biked around the cul-de-sac.  But then Hamhock decides he’s done and literally won’t get back on his bike.  We’re a block away from home, and he’s just dragging along.  Nothing I do or say is helping him understand that we need to bike home.  We do our share of exploring what catches his attention, including neighbor’s back yards, etc., and slowly making our way home.  Finally I had to prop Eric up securely, and walk with Hamhock and his bike to the next street before he could see our street so he would get back on the bike to bike home.  This is fine, something every mom has to do in various ways with her kids, but anything like this just reminds me of the deficits we’ve got to overcome.

This shuts me down.

It makes me sad that every interaction is stunted, blocked, different.  I know I haven’t learned the right skills and techniques to interact and teach and help Hamhock in free play.  I need to learn some new skills.  This is where I’m hoping the RDI comes in.  I’m hoping it will give me and Foo the foundation to break through that wall and get some real therapeutic teaching done during our free play days.

Mad at you

May 14, 2008

Hamhock: “Mom I’m mad at ya.” (He’s recently been using the casual form of “you.” It’s so cute.)

Me: “Why are you mad at me?’

Hamhock: “‘Cause you did something.”

Me: “What did I do?”

Hamhock: “I don’t know.”

A few minutes later he said he wanted to pump some gas in the car. So I inferred this was the reason he was mad, because earlier when we drove by the gas station and he asked, I said we had enough gas in the car and didn’t need any more.

Backstory from today: While driving through Sugarhouse to the post office, Superboy was pointing out all of our local stomping ground attractions: the food store (Wild Oats), the li-barry (Sprague branch), the train store (Barnes & Noble), the bank (Wells Fargo), the post office (USPS), and a gas station (not the one I go to, so I don’t even remember the brand).

When Hamhock saw the gas station, that reminded him that he wanted to pump some gas. He probably was especially sensitive because we went to Pep Boys yesterday to buy a brake light and some antifreeze, and I wouldn’t let him help me pour the antifreeze b/c I wasn’t sure how much and I needed to figure out the whole 50/50 thing.

So when we got home I let him go ahead and help pour some antifreeze in. I think he was happy after that.

I am particularly impressed with the above conversation, because he actually answered a “Wh-” question. Usually he doesn’t answer. This was one of the first times I’ve heard an answer. I loved how he also said “’cause” instead of “because.” That, combined with the “ya” makes me feel like he is getting some texture to his conversation – it’s not just rote, robotic language. That’s a great thing in the world of autism!

Later on, after Anya was done with his ABA session, he wanted to bike home with her. In complete earnestness, he said to me: “I’ll come back for ya” and gave me a big good-bye kiss with lots of smack on my lips. Har! Usually he doesn’t move his lips much when you give him a kiss, so it was particularly sweet how intense he was about biking home with Anya.

I guess Foo & I haven’t quite “accepted” the autism yet.

We’re still frustrated, angry, grumpy, tired, stressed, stretched thin, worried, anxious.

I remember meeting families with children with special needs in the past and thinking: “Geesh, just quit worrying about it so much.”

Now I understand.

There’s a problem, so all you do is worry. Maybe you stop worrying when you’re older, when “nothing more” can be done, when you’re dead?

It’s not just “the diagnosis.” It’s your kid, your life, everything you ever wanted, expected, desired.

Also the challenges created by the autism make life difficult now. We are working so hard to make things better, easier, more enjoyable to live.

But for now, we struggle.

Foo took the boys to a neighborhood girl’s birthday party last night while I was at work. Cool parents, sweet girls. But anytime Hamhock is awake, we have to be “on.” We have to know where he is, what he’s doing, and especially when he’s around other kids we have to be vigilant to make sure that he doesn’t hurt anyone too badly.

So, Foo was exhausted keeping him from destroying the house, from pulling the girls’ hair, from terrorizing the toddlers, and from sneaking contraband food. Foo was worn-out, as well as sad, that he couldn’t be like the other dads, just enjoying their evening, not running around after a 4 year old with autism, enjoying a relaxing moment in life. It also doesn’t help when they look at him running around, and he feels as if they’re all thinking: “why aren’t you just sitting down and enjoying yourself?” Or maybe worse: “I’m glad that’s not my life.”

I just want my child to have a full life. I want to share that life with him. I want happiness and enjoyment in that life. I hope that someday, someway, somehow it will be ours.

Right now, not so much.

Hamhock just figured out how to unlock the front door, and made a mad dash outside yesterday. You can call and call to him, and he doesn’t care – he’s off and running/biking down the street, so you have to throw on your shoes and RUN. I flipped the front door knob around so now I can lock the door with the key from the inside. The deadbolt still locks so nobody can get in from the outside.

There is constant whining and verbal tantrums, and Quiet Sittings help to calm him down, but mostly he has to do it when he’s ready or forgotten about whatever upset him. Basically, taking care of both boys is an exercise in enduring lots of whining and crying throughout the day.

Working to pay for ABA doesn’t help. . .Foo & I only see each other on Saturday and Sunday nights. Even then, I get off work at 8 pm on Saturday night, but do a 4 hour shift on Sunday morning at 5 am. So, I can’t really relax. Sunday night you have to start getting mentally ready for work again. During the week Foo works days, I work nights. We see each other only in passing.

I have to remind myself when I’m feeling down that there are amazingly adorable and sweet things that brighten our moods throughout the hard long days. Both boys are so physically cute, that it’s so fun to kiss their pudgy cheeks (both ends!), or tousle Hamhock’s locks of curls, or pat Superboy’s naked tush (often naked due to potty training), or tickle their underarms. My favorite thing about both boys is to get them to laugh. When they smile or laugh, all of my life has meaning and complete joy in that one precious moment in time.

Batman and Robin

They are hilarious with their love for super heroes. . . Superboy complete with his songs about Superman, Batman, Wonder Woman, the Flash, Green Lantern, Hawk Girl, Green Arrow, and John Jones. Hamhock’s face today lighting up as he played with his new Ironman mask and disc thrower, or Superboy’s focused attention on his new Superman figure fighting off Darkseid.

It’s so interesting how Hamhock has gravitated towards Batman, and Superboy towards Superman. I’m all too happy to be assigned the role of Wonder Woman, because I still think she’s as awesome as I did when I was 5. It’s so great that she is so beautiful and feminine, but is as tough as the big boys, and can completely hold her own.

To my two little superheroes: life may be challenging, but you make it all worth it!

I’m a Texas girl.

I am! I was born in Ft. Worth in 1970, when my dad was working as an engineer before he started his PhD program in History and Philosophy of Science at Indiana University nine months later.

I actually haven’t been back since.

But I married a Texas boy.

Foo was born in Kileen when his dad was serving at the base there. He lived there for only a year also.

He actually hasn’t been back since, either.

Not that there’s anything wrong with Texas (we just haven’t traveled much – hrmpf) . . .except for the study that discovered an increase in autism rates for mercury released from industrial sites. . . oops. . .

Mercury pollution linked to autism risk
Thu, Apr 24, 2008 (HealthDay) — The first study to show a statistical relationship between autism and proximity to industrial sites that release mercury has been published by researchers at the University of Texas Health Science Center at San Antonio.

Their analysis of data from 1,040 Texas school districts and data from 39 coal-fired power plants and 56 industrial facilities in the state showed that autism rates decreased by one percent to two percent for each 10 miles of distance from a mercury pollution source.

Among the other findings:

• For every 1,000 pounds of mercury released by all industrial sources in Texas in 1998, there was a corresponding 2.6 percent increase in autism rates in Texas school districts in 2002.

• For every 1,000 pounds of mercury released by Texas power plants in 1998, there was a corresponding 3.7 percent increase in autism rates in Texas school districts in 2002.

“This study was not designed to understand which individuals in the population are at risk due to mercury exposure. However, it does suggest generally that there is greater autism risk closer to the polluting source,” lead author Raymond Palmer, associate professor of family and community medicine, said in a prepared statement.

The research appears in the journal Health & Place.