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).

On the outside looking in...(Journal#79)

I want to see my baby in school. Such a weird feeling to have your youngest start kindergarten. Such an even weirder, uneasy, waiting to see feeling... to have your youngest start kindergarten, be in special education, and oh yah, be autistic.

While we have been trying so hard to have Sam be as mainstreamed in life and school as possible, there are still so many times we feel like we are outcasts or on the outside looking in. The first day of school was a great example. Our district decides if your child has morning or afternoon kindergarten, unless they have an IEP that would state differently. Of which Sam's does. Sam is in private speech therapy twice a week for two hours each time through a local hospital. After almost 3 years of one-on-one speech with an SLP, Sam is now in a program focussing on social/converasational speech skills with 4 other children and 2 SLP's. This program meets in the mornings. Brent and I felt it important to push for afternoon kindergarten, as we didn't want to pull Sam from this program because it aligned so well with his IEP language goals. So...we made the choice to have PM kindergarten.

We did not know that our whole neighborhood is AM kindergarten because they are walkers and walkers always get AM.

So Tuesday was the first day of school. I am so excited and have both boys outside to get our pictures by the same bush I have always taken our oldest's picture by since he started school. As we are taking the first day pics, the neighborhood mob of parents and children go walking by to school. While we were invited to partake, we did not, because Sam didn't need to go until PM, and Zach was getting a personal escort and ride by Brent. So once again, our attempt of getting Sam hooked up more with neighborhood friends seemed lost. Playdates are already being arranged for afternoons, when everyone is home from school (but Sam won't be). Pictures were being taken on the corner of "the group" that now walks together to school each morning. As hard as we try to keep up with typical friends and neighbors, it seems like we tend to keep out better. I am still not going to give up, but sometimes I just want to say "geesh, can it ever be in our favor".

I have intentionally kept some barriers up with neighbors, because some of the times we have had with them feels like such a struggle when I have to explain some of the things Sam does constantly. It is hard when they don't really understand. In most part, I can say it is my fault that we feel like we are outcasts. I know I could explain to them and try harder, but just don't always want to, nor have the energy to.

The first day of school came and went so fast, it is already almost Friday. My little boy is growing up fast. I wish he would tell us more of what he does at school. I will be touching base with his teacher tomorrow. I just want to know if he talks, or attempts to interact with peers. I just want to know, I don't want to be on the outside. I want the inside scoop. I don't want to always be on the outside of everything looking in.

A Twist of Faith
Sometimes life, people and situations can make you feel like you are an outcast. That in fact you are on the outside looking in. In those moments in time, we can be thankful that while it feels like we are on the outside looking in, that we always have the option of looking up. Of looking up to Him who provided for us. To that Jesus on the cross that saved us all.

I lift up my eyes to the hills- Where does my help come from?
My help comes from the LORD, the Maker of heaven and earth.
He will not let your foot slip -
He who watches over you will not slumber;
Indeed, he who watches over Israel will neither slumber nor sleep.
The LORD watches over you
The LORD is your shade at your right hand;
The sun will not harm you by day, nor the moon by night.
The LORD will keep you from all harm -
He will watch over your life;
The LORD will watch over your coming and going
Both now and forevermore.
Psalm 121

He's gone.....(Journal #71)

Our Sam is gone. He is not sleeping in his bed in the room below me. He is not curled up with his bunny blankie from Aunt D, he is not laying with his hands perfectly folded under his head, he is not stomping up the steps to tell me "potty" in the middle of the night. He is gone. Okay, don't freak out. He didn't escape into the night through our security system and all. He is at church camp for the very first time. And...don't worry, he is not alone.

Our denomination has this awesome Grand Camp they offer every year. It is just a "one nighter", but grandparents bring their grandchildren. It is a way for them to get a taste of church camp very early on, and a chance for grandparents to relive theirs.

I should feel fine...as Sam is in awesome hands with Grandma, and...he is on Holy Ground. Everyone refers to our church camp as that, even though it is not named that. Brent and I have been counting down to this day, just like we did the first time Zach went. Partly for a selfish reason, because it is an important place to Brent and I. We love that place, and we have directed for years, a high school camp there for a week in July, and will do so again in a few weeks. We started doing that well before kids, and we used to dream of the day our kids would start coming to camp. Our next dream is the day Zach joins us in high school camp (which I really hope takes forever, because I don't want those years to fly by).

Sam going to Grand Camp feels a little different than it did with Zach. Zach has been the typical first born, independent and fearless most times. But Brent and I aren't sure what church camp will hold for Sam. I don't know that I will ever feel comfortable sending him to church camp alone once he gets old enough to go, unless I could go as his assistant or PCA or something.

Sam gains knowledge of this world, just like all of us, by observing and then applying. He copies and mimicks everything, even down to the way something is said. He caught an episode of "Arthur goes to camp" on PBS kids a couple weeks ago. He has seen it a thousand times, but when the countdown was on for him to go to camp, he started preparing mentally for it. This morning as we were heading out the door preparing for our trip, his sweet little voice said,

"Mom, know morneeeeen at tamp?"
"Yes Sam, there will be morning at camp."
"No mom, you know what do in morneeeeeen?
"What Sam?"
"Wait up lite dis....." (wake up like this) as he then places his hand up to his mouth like a bugle and imitates a bugle call.
In my mind I am flashing back to Arthur and thinking great, he is going to think they will do everything. Sam is notorious for scripting and memorizing episodes. While he didn't go into script, this is what came next (for those familiar with that episode).

"Mom, dirls mean" (girls are mean). On the episode the girls and the guys at camp go at it because they think they are scaring each other in their tents, but it ends up being the bullies from the other camp.

"No Sam, girls are not mean. The girls and boys were both teasing each other in Arthur. That is what you are thinking about Sam, isn't it?"

"Yaaaaaaaaaaah." Discussion ends until we are in van.

"Need a tary tory" (scary story).
"What Sam?"
"MOM, NEED A TARY TORY. HAB TO HAB TARY TORY. TARY TORY MOM. TEEEEEELLL ME NOW."

Oh yah, then in the Arthur episode, they talk about the typical scary stories around the fire. I am just imaging what is going through my little boys head.

"Sam, they don't tell scary stories at church camp. That was just on the show Arthur. You sing around the fire at church camp."

He shrieks a little louder this time, "NOOOOOOOOOOOOOOOOOOO!!!!!! MOM, HAB TO TELL TARY TORY. YOU HAB TOOOOO!!!! NEED TARY TORY. TARY TORY MOM!!!"

Okay, so about now I am thinking, do I tell him a scary story so he has one? Then I think, duh, then he will be scared, he will play it in his head 50 times, then he will be scared at the campfire. So I try to think of a silly story, so I start telling him one. (This happens to be a real story, because it was all could think of on the spot. And...stupid me, this also happens to be the same Sesame Street book that Sam makes me read to him EVERY Monday and Wednesday while we are waiting in the waiting room for speech. He goes and gets the book from the shelf, I read, yada yada yada. ) Dang, he remembers word for word how it goes, I obviously don't, as I am fumbling words together. Look out...hear comes another wail!!!!!!!!! He was gone. Sam was gone, mad, upset. Only for 3 miles in the van.

"Sam, I spy with my little eye..."

That was all it took to bring him back. Now...if Grandma could please bring him back a little sooner too. Pleaaaaaaaaase!!!!!

A TWIST OF FAITH
Sometimes we take for granted those important people in our lives, and when they are gone, we miss them so bad our heart hurts. I know for me personally, that I take for granted all that God has blessed me with, and that sometimes the only time I seek Him, is when I want something back from God. I am soooooooooooo thankful he doesn't treat me that way. May we never forget all that we have been given.
~"For all things give thanks to God" (I Thessalonians. 5:18)

If You're Happy and You Know it...(Journal #58)

...thump the person behind you. Forgive me, but that is what I felt like doing today but knew better not to. Why? I will fill you in on that later.

Because the best part of today was the dream date I had with someone I love dearly. Sam. We had two tickets to the tour of "Go Diego Go Live". We have had them for awhile and have been counting down. The performance was in the Hennepin Theatre District in downtown Minneapolis, at the beautiful State Theatre, shown below. We were only a few rows from the stage. It was awesome. Sam was super happy. He has two extreme's of happiness that one must know about him. One is the "super silly, spinning around, smiling, laughing, can't stop moving" happiness. The other is the "this is serious, don't talk to me, don't touch me, don't sing to me, just let me be to enjoy this" happiness. Both of them are as equally happy times for him, of that only a mother can know.

So, the usher gets us to our seats, I just sit down, and there is a tap from a father behind me, "Mam, could you please change seats with your son so my daughter can see?" I quickly nod my head and exchange seats with Sam. I place my hands under his arms to lift him so that it will be smooth and quick, but Sam doesn't want to move from his seat. I turn back to the gentleman and tell him that it may take awhile to get him to move, that I would try again in a little bit. Under his breath I heard him say, "and who is the parent here?" I chose to wait before trying again, because I do have a little experience with my son, and while yes, I am the parent, I don't think the man behind me would like to hear the shrilling "noooooooooooooo" that would emerge, as well as some jostling of the body parts from a meltdown, that could result in elbows reaching the row behind us where he sits. (Editors note: however, even though we are a week into Risperdal, and things have been great, I didn't want to test the waters.)

I let Sam sit, for a few more minutes. I thought if I asked him if we could take his coat off, that it might losen him up a bit. He firmly told me no "toat on". Now, if you didn't know Sam, and you looked at him compared to every other kid in that theatre, you would have thought there was something different about him, but in my eyes, it was just his different way of thinking. I knew exactly what he was thinking. He had looked forward to this day for a long time. He was so excited. He was enjoying it and taking it all in. The lights that pulsated around him. The familiar music pounding from the speakers on stage. The fuzzy seat that rocked up and down. He was "seriously" enjoying it, even though his face seemed intense. Okay, so back to the changing of the seats saga. I found my moment to slide him over to my seat with ease, at which point he finally agreed to take his coat off very slowly. I refused to look at the row behind us to acknowledge our compliance.

As the show continued, parents and kids were up singing and dancing together. Parents singing the Diego theme songs, smiling with their youngster. Sam didn't want me to smile today. He made that very clear every time I tried to look at him. So I didn't push it. I just watched him when he didn't think I was looking. He remained in his seat, just watching all the motion around him, but you could tell that he was just taking it all in the way he wanted to. While those that know me, know that I don't just like to sit, and that I too would have rather been up singing, acting silly and having fun. This little ol'e elementary teacher knows how to act silly with the best of them. But I needed to be what Sam wanted on his special day. I was just fine, until...

...intermission...and the wonderful gent sitting behind me just couldn't stop being "father of the year".
"Wow, you two sure know how to have a good time and live it up! He doesn't seem real happy to be here. " he said.
I replied, "On the contrary, he is delighted to be here. He is just taking every ounce of it in. That is how he enjoys himself. "
I turned back around and asked Sam if he wanted to go for a walk. Quick exit needed before I started talking snitty.

What has Sam taught me? I have mentioned before that he has taught me to better understand the diverse ways we think and communicate and to respect everyone's differences in regard to that. I have learned that Sam can be happy but look serious. I respect how he wanted to share the joy he had of seeing Diego today. So therefore, I must respect that "father of the year" just has not had the opportunity to experience many people in his life that are different than himself. And for that, it is not his fault that he doesn't understand my son nor me in our short encounter. I am not learning anything from Sam and his Autism, if I can't apply it in life. Dear "father of the year", I do commend you for being a dad, who took time to take his daughter to a great show, I commend you for wanting to live and enjoy life to its fullest, may you never lose that. And I, I will respect you for who you are and what you said, not what I would have preferred you to be or to have said.

A Twist of Faith
If you're happy and you know it...shake hands and make peace!!
Maintain good conduct among the Gentiles, so that in case they speak against you as wrongdoers, they may see your good deeds and glorify God on the day of visitation. 1 Peter 2.12

The Autism Story, as told through the movie "Happy Feet" (Journal #43)

"Remember son, the word triumph starts with "try" and ends with..."umph"

~ Memphis (Mumble's dad) in Happy Feet

Twas the night before Thanksgiving and all through the house,
mama Cottington had a meeting , and the boys were not quiet as a mouse.

So off to the theatre dad took them so quick,
to see a new movie, the Happy Feet flick...

...so Brent took Zach and Sam to see Happy Feet, the adorable movie about a penguin named Mumble, starring the voices of Robin Williams and Elijah Wood, on Thanksgiving eve before we had a late night departure for grandma and grandpa's in Iowa. They loved it, and I was incredibly bumbed I couldn't go with them, as we love doing those movies as a family. When Brent got home, he told me I would have loved it, that it had lots of meaning behind it related to someone I know, but he did not elaborate. We then left for our trip to Iowa.

On Thanksgiving night, with all of our nieces and nephews, children, siblings and grandma and grandpa, off to the theatre we all went again. The movie of choice would be Happy Feet again, and of course the boys did not think twice about another viewing of it.

When we had gotten our popcorn and finally sat down ready, Brent looked at me and said that he wanted me to tell him who this movie reminded me of after viewing. He also told me that it would make me cry, especially after I figured the meaning out. Boy did I, and did I really appreciate Brent's synopsis and correlation of Happy Feet to autism. So here is how the movie goes with a direct correlation to Sam and autism.

Mumble, an adorable little penguin is born a little differently than all the other penquins. He comes out physically looking different than all the other penguins as well, when he hatches out of his little egg with all eyes on him. It is very obvious from the beginning that there is something different about Mumble.

The one thing that is the same, or "neurotypical" to penguins, is that they all have a heart song to attract them to their soul mate. It is made evident in the movie that all penguins must have this special ability to sing, or they can never truly belong. Mumble is so happy and content with who he is, not even realizing that it is a problem. He tries so hard to communicate to others that he has a song, but they don't understand him, because he doesn't sing his heart song like everyone else. His song is in his feet. He communicates differently. He taps his feet. He dances. He is happy with the way he does it. Mumble doesn't realize it is a problem until they separate him from group. Like a child with Autism. They try so hard to communicate. Even if they have words, are verbal, as with Mumble, the way they express their words and language still make it difficult for others to understand. While Sam is verbal, we have difficult times understanding what he means throughout the day. He has a hard time communicating to us what he wants, which is a huge basis of his melt downs. He can use his words, but he can't tell me when he is sick. It can be hard sometimes. What the movie makes clear though, is that it is not hard for the child to understand themselves. Mumble is so happy and ready to venture through life. I never doubt that Sam doesn't know what he wants. It is just the way that we understand each other. Now that people can understand Sam more and more, he still repeats so much of what he hears around him and from t.v. He understands when to use certain phrases, but he will expect the same response from you that he heard from "the other situation, show, or conversation he first heard it from." If you don't respond the way he expects, then severe frustration sets in. Mumble didn't understand why singing was so important. He didn't think he needed it. But the other penguins knew he would need his heart song to find a mate later in life.

The movie continues with Mumble's parents, Mempis (Hugh Jackman) and Norma Jean (Nicole Kidman) wanting to fix him. They take him to the most professional pengiun singing teacher in Antartica. Reminds me of the whole "cure Autism", gotta fix it now epidemic. In the movie, Mumble doesn't need fixed. He knows his heart song is dancing. It is others that can't accept him. You can even see the disapointment in his parents eyes. Mumble continues to happily go along, not seeing that anything needs fixed. He is a good sport and tries singing lessons, but to no avail, even the "professional" is done. The discussions/debates in the Autism community about cure, always come back to those of us with comments like, "you have him in speech and OT, you have tried diets, you have him on meds, isn't that wanting to fix or cure?".

No. It is helping him along lifes way. Helping him in areas of his life that can be challenging. Everyone (autistic or not) needs a good nights sleep, so Clonidine has helped him get that, and even helped him focus at school better. Neurotypical people use sleep aides who aren't seeking a cure for anything. We don't want Sam cured, we love him the way he is. To me, helping Sam communicate, learn how to use silverware, or how to use his words is simply helping him through this journey called life.



As Mumble grows older, he is unable to graduate with his fellow penguins and is the very last to lose his adolescent feathers. The gap in his development is very evident by now. Somehow, Mumble never lets this get him down and he is determined to do things the same as his peers. As parents of children with Autism, we see the gap between the things our children can do compared to their peers. While Sam is just approaching Kindergarten, it is becoming more and more evident just how far behind he is. We are staying focussed on the things he can do and celebrating the new things he learns along the way.



In Happy Feet, the fish population is decreasing for some reason, causing starvation among the penguins. The entire Penguin Nation blames Mumbles odd dance for disturbing the natural order. Mumble then sets out to prove them wrong. He discovers that humans are at fault in the chain of life. Through his "heart song", his dancing, he wins over the hearts of humans when captured and placed in a zoo display. His dancing reminds people about how adorable and imporatant these creatures are. Hence, the environmentalists come to the rescue, and thanks to Mumbles soul reaching out, the fish increase with abundance.



Perhaps, if we just accept and love our little ones with autism, knowing there is a beautiful heart song that they each sing, then life will be easier for them and their families. Maybe Sam won't marry like Mumble finally does, when he connects with his soul mate who uses his foot beat for her song, but Sam will be able to share his heart song with us forever. Autism is all about acceptance, awareness, and the human spirit.



A Twist of Faith

The three A's:

Awareness of others~ Jesus made evident through His parables and stories the importance of understanding others, from the women at the well to the hunger of 5,000. Awareness of others needs helps us to understand others.



Acceptance of others~ Jesus accepted everyone no matter what. He healed and touched lives of those whom others could care less.



Awareness and Acceptance of Autism, a must.



One of the teachers of the law came and heard them debating. Noticing that Jesus had given them a good answer, he asked him, "Of all the commandments, which is the most important?" "The most important one," answered Jesus, "is this: 'Hear, O Israel, the Lord our God, the Lord is one. Love the Lord your God with all your heart and with all your soul and with all your mind and with all your strength.' The second is this: 'Love your neighbor as yourself.' There is no commandment greater than these." (NIV, Mark 12:28-31).

Reality hits....hmmmmmm....... (Journal #10)

So, for me personally, I believe that Sam is very intelligent and very much a three year old (almost 4). But, this past week has been somewhat of an eye opener for me.

The first reality hits...............sometimes people say the darndest things. I had a friend recently drill me about the preschool program that Sam is in. As I have shared in earlier journals that Sam is in early childhood special education. He will receive services for as long as he needs. Because of his Autism, he receives services while in a preschool program in our district. The program is a wonderful program. The classroom is made up of 10 regular education preschoolers and 5 autistic children. The special education staff and regular education staff team together in such a way that you don't even know who is who.

My friend who was questioning me about the program kept saying through the conversation "So do these parents know that their kids are going to be in a class with Autistic kids? How do they "sell" that to the parents to pay and have their kids attend that class?" Now, first of all this wouldn't have been so offensive, except for the following..... a) this was a good friend asking me this b) she kept on asking several times, as if so concerned as to the rights of the "regular" education parents knowing c) came across as if she would never put her kids in a program like that. I don't understand why parents don't want their children to learn about different abilities, different ethnicity, different physical structures. To protect our children too much is to unprotect society and all we are. The more we understand our differences the more we will see how we are truly the same "human spirit".

Hmmmmmmmmm........ this really bothered me after I left her. I kept playing the conversation over and over in my head, and also remembering her body language. My answer to her was that they didn't need to know, she in return could not believe it. Hasn't our world come farther than this? As a teacher and understanding inclusion, mainstreaming, etc.... all children have a right to learn to their fullest potential in an environment conducive to their needs. I CAN tell you that Sam will learn to his fullest potential by practicing, learning in a classroom environment, rather than in one-on-one ABA therapy as many parents of Autistic children prefer. His chances of being in a mainstream kindergarten with assistance are much greater than if he did not have this opportunity.

I then started to get myself even more angry as I pondered our conversation. Are not most people familiar with the ADA (American Disabilites Act)? Don't they understand confidentiality. The fact that my child is Autistic and in a preschool with hers or other children does not even need to be told to her essentially. Hmmmmmmmmmmmmm...............people make me think. And...reality reminds me just who real friends are.

The second reality hits.........so, this past week I was afforded a couple opportunities (just by chance) to see Sam with other 3 year olds. I don't usually get to see this, as I don't have any other friends with kids his age right now. It was somewhat sombering for me. I really do believe he is so smart. Besides some of his fine motor, balance issues, and speech, he seems so 3 to me. But then I saw "other" 3 year olds. The way they talk, move, respond to their environment. I must say it was the first time in a very long time I saw a difference, and understood that he was different. Hmmmmmmmmmmmm.........