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)

Out our own front door...(Journal#75)

...is the neighboring suburb of Blaine, where yesterday afternoon, yet another autistic child was found dead. Five year old Kaylie Dickerson wandered out of her home without her family knowing it and wandered across the street into a pond. As the autism community in this area just mourns the loss of another autistic child who wandered away last week and died, in which area people here even volunteered in those search efforts in neighboring Wisconsin, yet the tragedy happens again. While we did not know them personally, goose bumps and heartache for the family is what I feel.

According to news reports yesterday and today, even Kaylie's family had all the necessary things in place to make sure she would not wander away, according to police.
~I am guessing that they too, like us, have a security system that also alerts you when someone is coming or going when the system is off.
~I am guessing that they too have a visual PEC system card near the door, that visually tells the child to stop before going outside and ask an adult.
~I am guessing that they too have a fenced in yard.
~I am guessing that they too have some type of indoor sound/video system to monitor their child in the house when they are not in the same room.
~I am NOT guessing, because I KNOW that we are all a part of the same local autism community, I know that our children are both 5, I know that our hearts ache for them.

Out our own front door is a lake. That has always been a concern. But geesh, in the land of 10,000 lakes, that is a little hard to avoid. Out our own front door, is a reminder that we should not let our guards down as we have a little this year. Up until this summer, anytime I am outside with Sam, I would hold him by his wrist (tightly) because he would not hold my hand. We had to always do this because he did not understand safety and would dart in to traffic and always away from us like a toddler would do. I know people thought it was ridiculous that we always had such a grip on him, but he was unlike our oldest, who understood by 2 years old what danger was. When I say we have let our guard down this summer, it is because Sam seems to understand a little better his boundaries and rules at home lately. He still goes out of the house without asking, but this summer we have been less worried about always having our security system chimes on that even alert us to which door. As of today, they are back on.

Safety is such an issue with all of our autistic children. For some it is that they are completely non-verbal and are unable to express help when they need it, for others, like Sam, is that they don't understand safety, or perhaps the way we teach it to them. We can not play "that game" parents play when they need to leave a location. You know the game...when the child refuses to go with you, and you say, "okay, we're leaving, see ya later". Sam is just fine with that, and innocently starts walking away to do whatever he wants to do next and pays us no attention. It is not in the naughty sense either, it is purely that he doesn't understand that he can not be left alone.

Out our own front door...in our neighboring suburb, we mourn for Kaylie's family.

Out our own front door...and across the street, we have the reminder that you can never take our kiddos safety for granted.

Out our own front door...is a world we pray will keep all of our children safe.

A TWIST OF FAITH
Out our own front door, we are reminded of just how unsafe it can be for all of our children. Sometimes, no matter how prepared we are, the unthinkable happens. Once again, we feel unsafe. But there is one place we can seek safety and peace, for we all know that God provides that for us. Kaylie is now safe and back in his arms again.

We depend on the Lord above to save us. Only he can help us, protect us like a shield.
~Psalm 33:20

Prayers for Benjy's family (Journal#74)

Posted June 20, 2007

Missing boy's body found in pond near home By Karen Madden
For the Wausau Daily Herald

TOWN OF SARATOGA -- Hope turned to sadness Tuesday when the body of 7-year-old Benjy Heil was found less than a quarter mile from his home.

Benjy disappeared from the home early Thursday evening, having apparently wandered away on his own. Each day since then, between 400 and 600 emergency personnel and volunteers searched for the missing boy, who had autism that impaired his ability to communicate.

A search dog discovered Benjy's body in a pond adjacent to Ten Mile Creek at about 11 a.m. Tuesday, said Lt. Dave Laude of the Wood County Sheriff's Department. The pond, which is as deep as 25 feet, had been searched repeatedly since the boy was reported missing.

The Sheriff's Department is investigating Benjy's death, although it is thought to have been accidental, Laude said. Wood County Coroner Garry Kronstedt said an autopsy has been scheduled for Thursday.

"The sympathy of our whole department goes out to Benjy's family," Sheriff Thomas Reichert said. "My thanks goes out to the extraordinary people who assisted."

The Wisconsin State Patrol, National Guard and Saint Joseph's Hospital in Marshfield were among the agencies that sent planes or helicopters to scour the area.

The Heil family reported Benjy missing at 6:38 p.m. Thursday and Wood County Red Cross Emergency Services quickly set up a command center across the road from the family's house at 14007 Highway Z.

"We can't begin to convey our emotion and gratitude at the outpouring of giving that has made it possible to serve the people serving the operation," said Pattie Kelnhofer, emergency services director.

K-9 units from local and state law enforcement agencies and dog search teams from Minnesota, Illinois and Michigan assisted with the search.

A TWIST OF FAITH

I give you this one thought to keep
I am with you still-I do not sleep.
I am a thousand winds that blow,
I am the diamond glints on snow,
I am the sunlight on ripened grain,
I am the gentle Autumn rain.
When you awaken in the morning's hush,
I am the swift, uplifting rush
of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not think of me as gone-
I am with you still-in each new dawn.
(A Native American Prayer)

Proud to have an Autistic child...(Journal#72)

Today is Autistic Pride Day, which had me all set up to write about it.

Write about it that is....until I received the Google news alert that David Kirby had an article in the Huffington Post that frustrated me.

Write about it that is...until I visited my friend Kristina's site. Her post today made me proud to know her works and her Charlie's story. It deals with a huge debate in our community, and for me sums up how I feel about David Kirby's root into the autism community (which he is apparently pulling out now).

Thanks for your words today Kristina, I can not sum it up even close to your great post today!

Autism Awareness Month celebrated in our Metrodome! (Journal #66)

A cool thing happened last night at the Twins game. In honor of Autism Awareness month, a 13 year old boy with Autism lead the crowd in "Take me out to the ball game" during the 7th inning stretch. Kind of reminded me of Sam, and how he has been humming and singing before speaking as well. Check it out!

WCCO, Channel 4 Story


A Twist of Faith

I will sing praises to my God while I have my
being. - Psalm 146:2

Normal People Scare Me Too!!! (Journal #65)

I looked up the word "normal" on good ole' Webster today. It defined it as follows:

of, relating to, or characterized by average intelligence or development b : free from mental disorder : SANE

So I further investigated by looking up "sane", and found it defined as:

1 : proceeding from a sound mind : RATIONAL
2 : mentally sound; especially : able to anticipate and appraise the effect of one's actions
3 : healthy in body

So I thought I would look up "rational":

1 a : having reason or understanding b : relating to, based on, or agreeable to reason : REASONABLE rational explanation> <rational behavior>

Must I continue? Because as I continued trying to define normal, I thought, who is normal all the time anyway? There are many days that I, myself, am not "free of mental disorder", and I know darn well there are people around me whom I would agree are not normal all the time, or as those of us in the autism community would prefer....typical.

I say this because, on Saturday, my oldest neurotypical son and I, enjoyed a wonderful event. An event in which we were able to view a movie I heard about awhile back. "Normal People Scare Me" is a film about autism, and created and documented by Taylor Cross, a brilliant 18 year old with autism. Taylor invited more than 65 individuals with autism or Asperger's Syndrome to describe their experiences on the film. Keri, his mother, helped him on the project that was produced by Joey Travolta, John Travolta's brother. Ironically, John Travolta has a 14 year old son, whom many believe is autistic, but because of their Scientology practice, are not allowed to call or treat it as such.

I am thankful for the efforts of our local Minneapolis group called Autism InfoGroup and Partner's in Excellence, and in collaboration with the Twin Cities ARC, who sought funding through local sponsors to make this event free. Keri and Taylor have been touring the United States and world this last year, and we were one of the first places to provide this free for families.

The day included break out sessions in the afternoon that allowed moms, dads and siblings to meet seperately and share their experiences with Taylor and his mother, who made the film, as well as Taylor's little brother, who is 11. Zach loved the experience of meeting someone else in the same situation as him. They became friends for the day, and even got to talk a little Nintendo DS chat. Zach thought it was "cool" meeting someone in a movie! Keri Bowers has dedicated her life to bringing awareness and acceptance into the community. She speaks volumes about getting our children ready through social and life skills training and has started camps in California for individuals with Autism to do so. She was very inspiring to me, and reassured me that Brent and I were doing things similar with Sam. She doesn't believe in sitting back with our kiddos with autism and letting the providers take care of the therapies that our kids do daily.

Keri has coined a term called "missions". That you create "missions" for our kids NO MATTER what level of the spectrum. They are going to be capable of doing whatever we believe. If we believe they can't handle certain situations in public or in life, and don't ever begin teaching them these things, then of course they never will conquer it. Even outings to the store need to be taught and practiced, and as Keri said, "do it 1,000's of times till they get it". Our kids need that to survive in society.

So a simple "mission" example is this....if your goal for your child is the best independence they can have in their adult life (which is ours), then you have to start "mission outings" NOW! Keri said that even for 3 year olds it is not too early, you just modify your short term goal. So, for us the last two years, we make daily outings into public with Sam. He has to learn to be able to go to a store as an adult, right? I think back to even a year ago. I dreaded Target with him. The flourescent lights, the sounds, and the smells were sometimes too much. But if you keep introducing them to the environment, they will eventually learn to cope. Yes, last week he still collapsed in middle of an aisle there, curling up in a little fetus position and wouldn't move because it was too much...but that is progress. I enjoy going to the store with him now. I am no longer afraid of what might happen. I love that he is going to point to every light that is burned out. I love that he is going to give them "free service as a stock person" as he lines up products that have fallen, or that are out of order when we walk by. I love all of that, and I can tell you that I would have NEVER said that a year ago. Our next "missions" with Sam at the store will be to make a list of some things that we need that relate to him (like shampoo or something). Give him his list. He has to look for it. Put it in the cart. Give it to the clerk and pay for it (with our money of course). Carry the bag out. Bring the shampoo in the house and put it in the shower. Sounds simple, but our kids need more of this, so that someday...they will do it on their own hopefully.

Below is a 10 minute clip from Taylor and his film. The full length is 90 minutes. This is an excellent resource to share with family and friends, who really don't understand what it is like for an autistic person. All of the interviews are with people on the spectrum, except for Joey Travolta, a therapist and some teachers and parents. This is also an excellent tool to use with your children's school and to offer to present as an inservice. Enjoy!



A Twist of Faith
After seeing the movie, I can see how normal people would scare me too! I scare myself sometimes too! :) God made us all so unique and special, and if he wouldn't have, we could never be the body of Christ He wanted us to be!
1 Corinthians 12:12-14 describe it like this: "The body is a unit, though it is made up of many parts; and though all its parts are many, they form one body. So it is with Christ. For we were all baptized by one Spirit into one body - whether Jews or Greeks, slave or free - and we were all given the one Spirit to drink. Now the body is not made up of one part but of many." This means each Christian is an equal part of the body of Christ!

Oprah's Show on Autism (Journal #64)

I wasn't sure if I was going to post my thoughts of Oprah, and her "Faces of Autism" show, as I needed some time to process it all. But, here I go anyway. The Autism Blogosphere has been full of chatters, ranging from the disappointment of Oprah not doing her homework, but relying on the stats and info from Autism Speaks, to some of the negative views of Autism that the "Speaks girls" can portray, to the whole vaccine topic being thrown out again by the daughter of Autism Speaks founders, (the Wrights).

Yes, I had a lot of mixed emotions while watching it, and was gritting my teeth, mostly through the first segment hoping for some positive discussion and not just negative portrayal. I was happy for Oprah's attempt though, in doing the show, in getting the word out, so that we can continue to strive for more autism acceptance. That was the biggest blessing. Also, I loved the father at the end who reminded us all of how much we get from our little ones with autism.

The part of the show that was the hardest for me (believe it or not was not the part when Katie went mad about vaccines causing autism***) was the sibling segment. What life is like for a sibling. Ask Zach. I did, as we watched that portion of the show together.

I struggle with all the time I spend with Sam compared to the time I spend with Zach. It really hit home with me a week ago. Zach, our oldest NT son was sick. He is rarely sick. He had a high fever for a couple days, could barely walk, and was extremely out of it. He needed a lot of my time. I also just wanted to spend time snuggling with him and rubbing his hot forehead. Mothers of 9 1/2 year old boys dream of times like this, because those opportunities fade fast at this age. I hardly had time to take care of Zach it seemed. I recall myself actually almost yelling at Sam that he needed to go play, as he paced the foot of the bed back and forth saying then screaming over and over "tome on mommy, tome on mommy, tome on mommy". I needed to be Zach's mom and show him that as well.

I have written before about how we divide time as a family a lot. I am thankful for a husband who has kept up with our plan since the beginning of this journey, and that plan was to never take time away from Zach. Even though Brent travels a lot, he makes sure to do lots of regular things with Zach. They weekly enjoy chess and checkers together at a favorite coffee shop on Saturday mornings. They go for special walks around the lake. Zach and I sneak in playing some PS2 after brother is asleep some nights. But it still seems like there isn't enough time to give him the time he always deserves.

So, I did it, after we watched Oprah's siblings of autism segment, I asked Zach if he felt like the boy on the show. The boy who said he never got attention, that in fact he had to create his own little world, kind of like his brother's sometimes, that his parents are always giving his brother attention and not him. My relief was Zach's expression (that typical duh look that 3rd graders are learning to do so well) followed by a quick "I don't ever feel like that. Actually, I get extra stuff with you and dad that he doesn't." He then went on to refer our silly nights watching our tivo shows after brother is in bed, his favorite being the nights his father, him and I are laughing hysterically at Dwight on The Office.

A Twist of Faith
I am thankful for the way Brent and I are working together for this family, for being on the same page, for keeping our family a family. We had a friend tell us, shortly after we received Sam's diagnosis, that families with autism have a divorce rate of 80 percent, top that off with a husband whose profession also boasts one of the highest divorce rates...we are both thankful and blessed that God leads us both on this journey. Thankful that we have supportive family, friends and faith.
"always giving thanks to God the Father for everything, in the name of our Lord Jesus Christ." ~Ephesians 5:20

(***Note~ for our family, our personal experience and belief is that vaccines are and were not a factor in Sam's diagnosis. I have the lot numbers from his vaccines to prove it.)

Tomorrow on Oprah (Journal #63)

Heads up that Oprah's show on Thursday is devoted to Autism. I am sure it is in light of April being Autism Awareness month. Of course, it looks like Autism Speaks is getting more than their two cents worth again...so let's just hope that they show our kiddos not being "so horrible" but beautiful! Dang!

Next week in Newsweek (Journal #42)

The November 27th issue of Newsweek will have a cover feature on "Growing up with Autism". Again sparking my interest in seeing into the future with Sam. Oh how I wish I could just even fast forward to next year in kindergarten to see how he does! Please check out a review at Autism Vox by my friend Kristina. Just an FYI.

I wish everyone a Happy Thanksgiving!

Paul in love...(Journal #24)

Tonight, Nightline will be featuring a special on Autistic adults in love, specifically a gentleman named Paul. This is the video clip: Autistic love in bloom

Just an FYI. Not much time to blog today.

This week in Time... (Journal #20)

Hope everyone takes "time" to buy this weeks issue of Time Magazine. We're looking forward to getting it delivered in our mailbox anyday. Thanks to everyone who shares with us their desire to learn and understand Sam and us, this may be an additional resource that will help. A fellow autism blogger, Kristina Chew , did a review of the article at Autism Vox . Happy reading.