Protest the Reversal on Vaccine-Autism Research

From the Autism Action Network (formerly A-CHAMP)


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Autism Action Alert:
Protest Federal Autism Committee’s Deceitful Reversal on Vaccine-Autism Research

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The inexcusable actions of the Federal members of the Interagency Autism Coordinating Committee (IACC) in retracting vaccine-autism studies must be stopped. Sound science must move forward, not thwarted by Federal agencies with vested interests in on-going vaccine-autism injury litigation.

The autism advocacy organizations listed below implore parents of children with autism - and all those who care about the burgeoning rate of autism and its toll on the health of our children - to take immediate action.

We are asking you to write a letter of disapproval to key government decision-makers on autism. Click here for a sample letter and instructions on sending. Your letter will be sent to President Obama, your Senators and Representatives, HHS Secretary Tom Daschle, the Senate HELP Committee, Senators Christopher Dodd, Joe Lieberman, and Edward Kennedy, and Congressmen Chris Smith and Joe Barton.

Your letters are needed NOW. The next IACC meeting is Wednesday, February 4, 2009 - less than two weeks away!

Here is what happened. Click here (http://www.safeminds.org/pressroom/iacc-blocks-vaccine-autism-research.html) here (http://www.ageofautism.com/2009/01/iacc-rescinds-vaccine-research-initiatives.html) for more details.

In a highly unusual departure from procedure, government representatives to the IACC voted on January 14th against conducting studies on vaccine-autism research despite approval of the same studies at their prior meeting on December 12, 2008. The research was supported by numerous autism organizations and requested by IACC’s scientific work groups and Congress. The maneuver to re-vote was initiated by the IACC’s representative from the CDC and pushed through by the IACC Chair, Dr. Tom Insel, Director of the National Institute of Mental Health of NIH. Review of the studies was not listed on the committee’s official agenda, in violation of normal committee practice.

Unlike most Federal advisory committees, the IACC is dominated by government representatives occupying 12 of the 18 seats. Dr. Insel admitted at the meeting that HHS agencies (which includes NIH and CDC) have a conflict of interest in conducting vaccine-autism research due to “Vaccine Court” litigation in which HHS is the defendant. Of the 6 non-government (public) members, 5 voted to retain the vaccine research at the January meeting. The lone dissenting public member resigned from her organization, Autism Speaks, the night before the meeting. Autism Speaks has issued a statement denouncing her vote.

The Federal members of the IACC must know that the autism community objects to their manipulation of committee procedures to block unbiased research on the possible link between vaccines and autism.

They must hear that parents demand reinstatement by the IACC of the vaccine studies that were already part of the IACC’s Autism Research Strategic Plan, and to restore the funding already allocated to this research.

They must acknowledge the inherent conflict of interest of the NIH/CDC in conducting research on vaccine safety. Research initiatives MUST be coordinated by an independent committee that includes equal numbers of representatives from the autism-vaccine injured community and conducted by independent and non-biased entities.

We also urge parents to attend the February 4th IACC meeting in Washington DC if they are able to. Click here for the IACC website http://iacc.hhs.gov/events/ to register. We encourage you to sign up to make a public comment at the meeting.

Autism Action Network (AAN)
Autism One
Autism Research Institute
Generation Rescue
National Autism Association (NAA)
SafeMinds
Schafer Report
Talk About Curing Autism (TACA)
U.S. Autism & Asperger Association
Unlocking Autism

We're Only Human

A very good friend of mine, though we've never met face-to-face lol, wrote a post on her blog, This Is The Life of a Soccermom, about how she sometimes just feels like she just wants to stop her job of raising a child with special-needs. I completely felt her whole post. Us "Special-needs Moms" have a tough job. It's not easy, we're not saints. It's hard work! And some days we just want to give it all up, throw the towel in. Of course that mood always goes away. But I've learned not to ignore it- it's only human to feel that way sometimes. Her post reminded me of a diary entry- I went and found it and it was written in December of 2007- after trying to attend one of Josh's basketball games where Brian was just completely out-of-hand. I have a lot of family members who play sports but unfortunately I'm not ever really able to go and enjoy any of their games. I'm going to share it as I found Michelle so strong and brave for her post and it was truly inspiring.
*******************

12.02.07

i give up. i forfeit- throwing the towel in. i can not do this anymore- i did not ask for this. i'm not a goddamn martyr. i tried that role. always spinning it to give it a postive vibe. but i feel i've run clean out of optimism. cynicism is my new best friend. i've tried everything the past year and a half. every new therapy i read about. tons of money on special foods and supplements spent. why can't it work? why can't brian overcome this? why have i lost all patience with him lately? i want to lead a normal life. i want to go to a freakin basketball game- is that so much to ask? i feel like a spoiled child when this mood overcomes me but i have realized i'm entitled to it. feelings are just feelings. not wrong or right. they are there no matter how much positivity you drill into your head everyday.

Educational Website Reviews

I wanted to share two excellent resources we utilize on the regular here in our household-

*Do2Learn : Our speech therapist introduced us to this site. It has tons of *free* printables that make life for Brian so much easier- clipart, schedules, and organizers. The site has art projects, games, and our all-time favorite "Sounds Sing-A-Long". They are videos of a speech therapist singing catchy songs emphasizing on different sounds. She over- enunciates so the movements made by her mouth are very clear and that is so helpful with someone as visual as Brian, and most children with autism.

*Starfall: This one was introduced to us by Corbin's kindergarten teacher. We haven't fully explored the site but have exhausted the "ABC: Let's Get Ready To Read" section. Corbin needs a little extra help with his phonoligical awareness and this seems to be the key. He doesn't even realize that he is learning and asks everyday to go on the "star site". Each letter has it's own page where it continually gives the sounds of the letter over and over again. Brian has even started using it as he does know his letters receptively. He likes the games at the end of each section, as does Corbin.

Styling {Scrapbook}

Brian hamming it up for the camera in those silly flower sunglasses- the picture was about a week after his first birthday- those glasses were some of the favors we gave out to the kids who attended.

things I don't like

* waiting rooms- no matter what the response I get from the other people in the room towards Brian I don't think I can be happy- "every child develops at their own rate", "nothing seems wrong with him to me", and of course the staring and rolling their eyes---- okay, sometimes I have had good conversations in waiting rooms but today i'm feeling bugged by this

* walking down the hall and having a parent say to her child, who is probably the same age, "Yes, that baby is crying"- my son is not a baby- he's a big boy just like yours (okay at home he is my baby lol)

* not being able to go upstairs for five minutes without brian deciding he wants to try out corbin's science expirement and i come downstairs to find bubbly baking soda & vinegar all over the kitchen table and floor

* corbin having a HUGE meltdown at the movie theaters because he can't play air hockey- mind you this was after several video games before the movie, his own kids pack, and a movie

* certain offices that always mix up my information and my appointment dates

* getting bit by my students

* cold weather

* chores


Okay, there it is, not the best day today (though the movie ordeal was last week and the volcano was two days ago- so only the rest for today)- so I vented, now going to eat some junk food, and go to yoga tonight....it will be alright ;)

Anxiety of Preschool

This week has been a hard week for Brian. As you know he doesn't currently have a one-on-one. In the past when his one-on-one was sick he didn't attend preschool but now where the head teacher is now his past one-on-one she wanted to make an exception and allow him to come. I think she feels bad, though I've tried to tell her not to- I knew from the beginning she really wanted a head teacher position. I had my worries about bringing him to the preschool without a one-on-one but the only other option I had was to bring him to work with me everyday which works, but barely. I tend to just watch him the entire time and my other students are deprived of the one-on-one time they usually get with me.

So not only, did he start going to preschool without a one-on-one but the preschool also moved locations over the Christmas vacation so he had all kinds of changes piled on. Oh, and let's not forget the fact that I would be dropping him off, where in the past Jen would bring him to school.

Tuesday was his first day. He cried as soon as we pulled in, all the way down the hallway, through the putting away of his stuff, finding his name, writing his name, saying goodbye to me. Clinging on- putting on the major guilt trip most kids do to their parents. I picked him up a few hours later and both of his sleeves- from the wrist all th eway to the shoulder were soaked from him chewing on his shirt.

Wednesday- same crying routine. Refusing to say hi to his teachers. Picked him up and was told Thursday would be his last chance- not because he was being disruptive but because he was trying to eat everything in the classroom- beads, styrofoam, car tires, etc. They were worried for his safety, as am I, without a one-on-one next to him at all times to make sure he's not going to choke on something. (I should mention that we haven't seen any of these PICA behaviors returned at home thankfully).

Thursday- deja-vous with teh crying. Expecting a call all day at work as I told them to PLEASE call me, I didn't care, if the PICA behaviors were the same. Didn't recieve one, picked him up (oh and I have to say every day this week that I've picked him up has just been priceless- the smile, the run to me, the jumping in my arms- I do treasure that part of these days), and they said he actually had a better day and they would be happy to see him on Monday.

Our Case Manager stopped by Thursday afternoon and said she had visited him during the day at school and that he just seemed really lost. Just wandering around the classroom. At snack he threw his bowl into the trash rather than the sink. At circle he walked in a circle during a song while all the other kids did the hand motions. It makes me sad to imagine this and sad that he can't stick to the routine without the constant support of a one-on-one. I'm also so frustrated that we haven't found a new person yet. My child's 30 hours of direct services are now nonexistent and it's not fair to him.


Oh, and I took Brian to work with me today. Pulled into my school's driveway and he started laughing in the backseat. Got out of the van, put on his own backpack, waited, smiling, while I unlocked the school, ran down the hall, hung up his backpack and jumped his way into the classroom and started playing. I think he's definitely having a bit of anxiety about leaving me and just not having the support he needs in his busy "typical" classroom.

50 Words {Scrapbook}

Corbin too was a late talker and I made this layout to celebrate when he had 50 words- it was fun to watch his language blossom so quickly once he got over that hump in the beginning. Now the kid NEVER shuts up lol. Still got the articulation stuff going on but nonstop chatter all the time.

My Eyes Are Beautiful

Remember the post, Kissing Girls, when a classmate became quite fond of Corbin and vice versa. Today, while I was picking him up at the bus stop I saw that he was sitting with Miss Chloe. Once in the car I decided to tease him a little bit. Our conversation went something like this...

"So Corbin, who was that that you were sitting with on the bus?"

"Chloe"

"Ooooohhhh Chloe. I see"

"Oh I'm not really her boyfriend, I'm just a friend. She said I her boyfriend, not me."

"Oh she wants you to be her boyfriend but you said no?"

"Yeah, she say I her boyfriend cuz I have beautiful eyes."

I started busting out laughing. I asked him to repeat it again. Sure enough, he said that she said he had beautiful eyes. I asked him if he told her she had beautiful eyes and he said...

"No, cuz her eyes aren't like mine. See mine, Mom? They're beautiful!"

It seems narcissism will follow through to the next generation in my son.

Shocked!!

I'm sitting here, checking up on all my blogs, being lazy as I'm staying home with Brian today, and nearly just jumped out of my seat when I heard "Yeah!!" shouted to the TV in response to Mickey Mouse asking, "Are you ready?"

Brian just responded to the TV accurately!!! I'm just stunned right now!!




Oh and so I don't have to make another post, Brian is doing good! Thanks everyone for your prayers. His fever actually broke yesterday and he started playing and looking at us again, rather than through us. He started drinking and eating and loving the fact that he got to have a couple popsicles to help get him hydrated :). Staying home today is kind of a mix of maybe he needs a bit more rest PLUS the fact that he'd have to go to work with me today, which isn't really panning out that great so why not just take one more day to recuperate. We need our one-on-one back!!

Sick & Out Of It

Brian is sick. He's been cranky for a few days but I really put it all on the fact that his routine has been thrown out the window. Now I'm thinking it was probably his little warning that something was wrong.

Yesterday afternoon he fell asleep on the floor at Kim's house around one in the afternoon- proceeded to sleep on the ride home and stay asleep once I got him inside until I woke him up at 5:30. He had peed his bed during his nap so I put him in the tub where he just cried and cried- I knew something was wrong as he LOVES tub time! I dried him off and finally realized he was scolding to the touch. His fever last night reached 102.4. Today it's stayed around 101 all day long. He won't eat and will only drink a gulp of water here and there. I'm worried he's becoming dehydrated as he has only peed once since this morning and his lips are all chapped. I can't get him into the tub to try to cool him off. I can't get him to take any medicine whatsoever. It's a fight just to get his temperature. He's slept almost all day and when he is awake he's lying on the floor and totally vacant.... though I have got a smile or two here and there when I give him kisses and hugs.

Right now he's lying on the floor between the couch and the coffee table. Thumb in his mouth and the other hand just turning a ball around in a circle. He's been doing it for about twenty minutes now.

I hate it when he is sick. He can't tell me what hurts or what might make him feel better. I can't reason with him and help him understand that I just want him to feel better. I don't know how much he understands, especially when I hear him whimper on the couch from something that doesn't feel good on his body. I hate seeing him become even "more autistic" because he is so out of it. It reminds me of how he use to be and it scares me he's slipping back.

Catching Up

I'm usually a pretty active blogger but been a little slow this week. It's been crazy getting back into the routine of things, especially missing a huge component of our lives- Brian's one-on-one.

Corbin has gone back to school, though we had a lovely snow day yesterday :), and he has started basketball. My very ackward little boy lol. He did GREAT at soccer, I think that will be his sport. Basketball requires a bit more coordination with his arms and hands which he seems to struggle with. Though I did see a huge improvement from the beginning of practice where he was dribbling with his whole arm to the end where he seemed to have figured out, a little bit, just moving his wrist.

Brian has been having a hard week- but I know it's due to his schedule being so out of whack. He has either been coming to work with me (which has been a bit crazy as we have several new students that are also trying to figure out the routine) or staying home with Josh- which I'm sure is comfortable to him, but I know (I won't pretend) there isn't much structure during that "male bonding time".

I've been having a bit of depression, maybe the time of year- though it's something i've struggled with, along with anxiety, for a while. Luckily have finally started with my new therapist and feeling good about the new year and making some changes in my life.

I also had a chance to talk with the man who did Brian's cognitive testing and had the chance to talk to him about my displeasure of the result and the fact that he hadn't set up a meeting with me and this pile of bad news was just given to me with no explanation. He listened and he agreed with using a different test with Brian but he did point out that not only were the low scores due to Brian being nonverbal but also because of the fact that he is very hard to focus and keep his attention- which I owned up to and agreed with. I just expressed that I know he is very smart and it's hard for me to see a test pinpoint him at a level and I'm worried about public schools next year seeing this test and just pushing him through school, thinking he can't learn because he can (phew, long runon sentence there- bare with me). If someone had told me a year ago that my little boy would be able to write his name, know his numbers and put them in order, know about half of the letters, his colors, and shapes, understand patterns- be able to follow two-step directions- I would have NEVER thought it was possible. And that was just a year ago- I want people to know that- that he CAN LEARN- he just needs a highly structured environment. My kid is going to recieve the best he can next year and they better realize it because I'm not stopping until he does.

Okay, just had a moment of SuperMOM there. And it felt good.


Oh, and did I forget to mention that Brian hasn't had any accidents in two weeks. I don't even have to ask him to go to the potty- every single time is self-initiated. Even the bowel movements. {Applause entered here}

New Years Resolutions

Here are my goals for the year!

* I am not too cool for school. So many years I've wanted to go back to school, and many times I've said- "this is the year". But THIS is the year. Everything is in place, there is absolutely no reason for me not to.

* Stop spending on "extras". We need to save up money to move to whatever school district we choose for Brian to go to kindergarten- so that way both Corbin & Brian can be in the same school district.

* Exercise daily. This resolution has failed in the past but I've been in the routine of doing so for about two weeks now and it's going good. When I exercise I have more energy throughout the day and generally just feel better. I like that. I want it to continue.

* Put more time and resources into my lia sophia business. It definitely was awesome to have that extra income for Christmas- now it's going to go towards the aforementioned move.


Corbin's New Year Resolutions:

"I just want to play outside for one hundred years"
"I want to grow up like my Mom"
"I want cool beds ever"
"I want game for myself, like Josh game"

Creativity follows Boredom

I love the fact that with my job I have the same vacation time as the kids but near the end of it, I can sometimes start feeling a bit stir crazy. This vacation I think I have turned that feeling into something more creative. I have rearranged three rooms in the house, made a display board for my lia sophia jewelry, cleaned, cleaned, and cleaned some more, and "refinished" a chair.

My apartment is filled with pieces from family and friends. Almost every piece of my furniture now that I think about it. I don't know what I would've done without my circle of "peeps". When I became a single mother I had to leave the relationship safely- and that meant leaving with what I could fit in my Mom's van- I never got to go back to get the rest. And of course, anything we had accumulated while we were together, was his. It's a sore subject with me- especially since a lot of the stuff I left were memories, not materialistic things. Anywho, I feel I might have got a little off topic here.

My stepmom gave me these two metal chairs that were upholstered with this plasticky picnic table print, which had a big rip in it. I used them in the kitchen of my first apartment. When I moved here my brother gave me a set of chairs (well only three lol but it worked for us!) for our kitchen table so the two others became desk chairs. I appreciated everything I've ever been given but I have to say the chairs have never been my style and I've talked and talked about doing something about it. Three years later, here I am. I got bored and painted it this fun blue that we used on the kid's picnic table two summers ago and reupholstered the seat with a black & white print from a skirt I had in the Goodwill pile. I love it! It's so funky, and it's so me. I painted a lamp the same color and bought curtains today. So my room is slowly actually getting a color theme going to it.

Now I need to do the other to match the computer desk in the livingroom.

Bringing in 2009 {In Pictures}

Corbin made it to midnight- his first time watching the ball drop. Brian had the option but put himself to bed around seven.