Shout Out for B!

Wanted to share another beautiful video on the "Five For Fighting"/What Kind of World do you Want website.

My friend and fellow autism advocate in our hometown, created this beautiful video of her son and the beauty found in autism. Five for Fighting donates $1 per view to Autism Speaks. Stop over and view a few times.

Beautiful B and autism video (click)

Her family and ours are also walking in the "Steps of Hope" Autism walk for our states Autism Society. Thanks to those who have pledged already. If you haven't had a chance to yet, here is a link to our secure pledge site.

Steps of Hope pledge site

Thanks to everyone for always being so supportive.

A Twist of Faith
Everything that is done in the world is done by HOPE. ~Dr. Martin Luther King, JR

My 2 Cents on Eli Stone taking on Autism and drug companies (Please see 1/28/08 update below from the American Academy of Pediatrics)

Who is Eli Stone? My 2 cents worth on that in a bit.

My 2 cents worth... of sharing about Sam since starting kindergarten has been deliquent, therefore I am closing this account. Just kidding! I will say I am sorry that I haven't updated for a long time, but I will share why as I move to a new blog beginning with my next post. The next post of this blog will have the link to my new one. Thanks to all of you for encouraging me to get back on the saddle, and I hope to do that from here on out. S.M.S., I will dedicate my first post of my new blog to you (thanks for pledging and kicking me in the butt, and a check is in the mail for Ethan and the American Heart Association).

Before I move...to my new blog...I want to have this post be to our family and friends to understand our position on Sam and what we believe to be his origins of Autism. I say this prior to a prime time series that is coming out next week on ABC....

Eli Stone...this is a new series about which the New York Times said Wednesday, "The drama, “Eli Stone,” scheduled to be broadcast at 10 p.m. on Jan. 31, centers on a lawyer who begins having visions that cause him to question his life’s work defending large corporations, including a pharmaceutical company that makes vaccines."

Eli goes on to defend a mother whose son has Autism, as they take on a large pharmaceutical company in the series premiere.

(Update 1/28/08) Copy of AAP Release:

For immediate release: January 28, 2008

CHICAGO - The American Academy of Pediatrics (AAP) is demanding ABC cancel the opening episode of “Eli Stone” scheduled for Thursday, January 31. As reported in The New York Times, the episode features a lawyer who argues in court that a vaccine caused a child’s autism. While the show includes statements that science has refuted any link between autism and vaccines, the episode’s conclusion delivers a contrary impression; the jury awards the mother $5.2 million, leaving audiences with the destructive idea that vaccines do cause autism.

“A television show that perpetuates the myth that vaccines cause autism is the height of reckless irresponsibility on the part of ABC and its parent company, The Walt Disney Co.,” said Renee R. Jenkins, MD, FAAP, president of the AAP. “If parents watch this program and choose to deny their children immunizations, ABC will share in the responsibility for the suffering and deaths that occur as a result. The consequences of a decline in immunization rates could be devastating to the health of our nation’s children.”

No scientific link has been found between vaccines and autism. The AAP and other health organizations will continue to work to ensure the safety of childhood vaccines.

For accurate information on autism, immunization and other child health topics, visit the AAP’s Web site, http://www.aap.org.

Our position as a family and in regards to Sam, has been that we do not blame vaccines. In our case, Sam's vaccines did not contain large amounts of the mercury-based vaccine preservative called thimerosal. You can get the lot numbers for any vaccines your children receive from your pediatricians office. You then use the lot number to search VAERS Public Data, as well as the site CDC site. Another site of interest is Aspies for Freedom, to witness from the eyes of those with Autism, and how they feel about people thinking they need to be cured. A post from a couple years ago about "Vaccines and Autism" was created by the sites administrator, Amy.

If Eli Stone can find faith in George Micheal's big comeback, perhaps we can find faith and strength as a community to not blame but accept, and to not cure but to celebrate.


A Twist of Faith
My 2 cents worth...is that I hope one day that our Autism community will not be divided on the cause of Autism, but united in the acceptance of who our children are.While we refuse to discredit the families who feel victim and believe that vaccines are the cause, for Sam and us, all roads lead to genetics and the beautiful Sam that God knew before he was born.

The word of the LORD came to me, saying, "Before I formed you in the womb I knew you, before you were born I set you apart;" (Jeremiah 1:4-5).

Recalling things...(Journal#80)

I can easily recall the first feelings I had that Sam was possibly autistic. I can easily recall the first diagnosis, the second, and third...all to confirm that Sam had autism. Watching Oprah yesterday, who did her first show on autism only a few months ago, and followed up already again with Tuesday's episode, made me recall some of those feelings.

Seeing Jenny McCarthy on Oprah yesterday was nice, because it helps get more awareness out there on autism, and helps people understand our kiddos. What was harder for me, was her constant word use of "getting my son back", or that he is in "recovery". I guess for me personally, I have never felt the need to get Sam back, or to cure and recover him. I feel that Brent and I have always accepted Sam for who he is and have worked with him to help him function at times when it may be hard for him. Yes we have had him in intense therapy and programs and speech and OT and tri-monthly medical assessments to monitor his medications. I consider these methods to be tools to help him function in life better, but not change who he is. If you have poor eyesight, you help your eyes by getting glasses. We are just helping Sam along the way.

I guess what I am trying to say, is that we only know Sam as he is. How God blessed him to us. We know nothing different, nor do we want anything different.

Sam has a real hard time with word recall. Some of his worst metldowns occur because he can't recall or remember the simplest words. The other day, we had a 45 minute meltdown because he tried so hard to remember the word cup, and couldn't. And the problem arises when I give him his word choices, and I don't choose the right word he has fixed in his head when he hears it. Here is how it went:

As Sam stood by the refrigerator, he swayed back and forth saying over and over "I need....I need... I need"

I tried to give him some good wait time to recall on his own first, but it is kind of like a balancing act, because if you wait too long before giving him a couple of choices, the meltdown starts, and if you give him some word choices too early, you will have a meltdown because he wanted to think of the word on his own first.

I chose to wait this one out.

"MOM...I need...I need...I need.....oooooohhhhhhhhh" as he then falls to the kitchen floor on his tummy and pounds his fists onto the floor.

I then drop to the floor at his level and look at his face and say "Sam...use your words, not your scream. Mom will help. Do you need food or drink?"

He quickly screams. "drint".

"So Sam, say ...I need drink".

He then rolled over to his back kicking and screaming saying, "no drint".

I am quickly giving some drink choices to see if those are the words he was trying to recall. Of course, to no avail, were any of them right.

Long story short. All along he was trying to say, "I need cup". He was going to get his own water. He just needed a cup.

It just really makes me sad sometimes, when he can't recall simple words like that, and when I see the frustration in his eyes in trying to recall the correct words or phrases. Yes all of those things can make me sad for him, but it never makes me want to change who he is with his autism. I guess you could say I would never "recall" my boy and send him back! :)

A Twist of Faith
Sam and I have been working on some of his vocabulary cards the last few weeks with many of them containing animals. We started this silly game, where Sam says, "What if I was a snate (snake) mom?" and I always follow up with "I would still love you the same Sam."

Well the other day he laughed and he followed with, "Mom, what if I was mouse?" as he knows I HATE them. I gave him the response that I thought he wanted.

I faked a scream, "ooooooo Sam, I would run around the house screaming." Sam very quickly put me back in my place. "MOM!" he said, "You ted you dove me anyway!" (you said you'd love me anyway).

Now tell me he can't recall things! Thank goodness he remembered I will always love him no matter what, and my heart knows that he also knows that God does the same for him.

But Zion said, "The Lord has forsaken me, my Lord has forgotten me." Can a woman forget her nursing child, and show no compassion for the child of her womb? Even these may forget you, yet I will not forget you. See, I have inscribed you on the palms of my hands…. (Isaiah 49:14-16)