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)

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

On the inside...(Journal#76)

...all God's children are amazing!

My friend Aspiemom brought my attention to Paul Potts from England in a post she did last month. The video is of his first audition of the English version of America's Got Talent. He later went on to win the competition in early June. As Aspiemom said, watch the judges expression when they first see him.







Just as Simon and Piers' faces revealed surprise and wonderment at the end of the video, because they weren't expecting that kind of beautiful talent from somebody who looked like that, such are similar situations for our children with autism.

I will brag, that our Sam is the most incredible charmer I know. When he is on, and things seem in balance, he will give you a smile to die for. So lately, as some of his meltdowns and aggression seem to be flaring up more, it throws people off as to the person he really is. When he looks like any other 5 year old boy, and smiles so beautiful, how can one make sense of an instant change to his head ramming, screaming, and destruction of things. All this because we misunderstand what he says, needs, or wants.

But...it is here, this week, that I wish our world was just more accepting of everyones differences. Brent and I are in Iowa for a week. We are directing a high school church camp, of which we have been a part of for 11 years. It is amazing the challenges that these children bring to camp. Sexual abuse, family problems, eating disorders, dealing with recent death and illness of family and parents, the list goes on. Our kids today have so much on the inside, yet can appear to others on the outside as fine. It is only in certain situations does the hurt come out, whether it be at a night worship around the campfire or when they are spending time in their small study groups.

As we prepare for the last full day of camp with these incredible youth, it is heavy on my heart, just how much we judge people by their exterior. That if they appear typical on the outside then we don't understand when the inside feelings we have change our outward appearance.

On the inside, some may hurt.
On the inside, some may want to be their true self but for other reasons can not.
On the inside, in our hearts, is where we can keep God's love for those times when we are judged by others. So let us too remember not to judge one another but to love one another from the inside out.

A Twist of Faith
As the scribe asked Jesus what he felt was the greatest commandment, the law that should be at the top. Jesus replied, "First, love God with all your heart and soul. But most important, love your neighbor as yourself." If we really loved our neighbor as ourselves...everyone...including our children with autism would be accepted by all.

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!

On Friends....The Discrimination that Siblings Face (Journal #68)

I am very proud to participate in today's Blogging Against Disablism event.

On my mind and heavy on my heart is my neurotypical son and the ways he has been discriminated (unknowingly) by his own peers. Zach is a wonderful big brother to our Sam with Autism. Being a big brother often bears extra responsibility in any family, but having a little brother with special needs draws even more responsiblity and challenges at times. From very early on, Zach has been aware of how some people observe us in public. The times when Sam is on sensory overload, dysregulated, and maybe having a hard time getting us to understand his needs when in a store. Then the screams come from Sam, the falling flat on the floor, then the glares from others to control our child. Zach notices. He lets me know when people are staring, or even following us all over Target as an elderly gentleman literally did for 20 minutes a few months back.

But...what I believe is hardest for Zach, is the way his own peers have treated him in specific regards to his brother. Granted, these are children who are growing up with Zach. I don't expect 9 1/2 year olds to truly understand Autism. I don't expect them to understand when Sam is suddenly angry and charging them in our backyard because they came too close to his "special space". I don't expect them to understand why he sometimes screams more than he uses words. Why his emotions don't match the action that Sam is doing. Why he may repeat things over and over or why he will run circles in the yard over and over. Why he sometimes acts like he is 2 or 3 instead of a 5 year old.

But...here is what I do expect. I expect that the children who come to our house to play with Zach are respectful. I always make sure the parents of the children who come understand that Sam has Autism. I tell them that if their child comes home saying Sam was screaming the whole time, that there are some days we don't even know why, but to use it as a chance to teach compassion. I have leaflets and info always available for parents to understand. But I wonder if they really care to sometimes.

I have heard Zach's friends say on occasion, that they don't like to come over to Zach's house because of "his brother". There are many times they are very rude. But, I forgive them. They are children. It just feels so unfair to me when I saw that Zach's friends were choosing to come over less the last couple of years because of his brother. It didn't feel right.

So...last summer, our backyard took on a new formation. Brent built a treehouse for the boys and we added a trampoline for Sam's Occupational Therapy. It helps with his vestibular issues and balance and coordination issues. Suddenly, Zach's friends start coming around again. They have figured out how to play some creative games of football on the trampoline and other crazy stuff. Zach has been in heaven having his friends show up a little more. But, again, he too feels it is just for his "backyard".

I reached my limit a week ago. I was pushed to it, because prior to this incident, Zach and Sam had started communicating and connecting in ways we really hadn't dreamed. Sam is letting Zach into his world more, even though he still dictates what to do. Zach is increasing his patience with his brother, because he really wants to be a part of Sam's play and world.

Then, on a nice afternoon, along comes two of Zach's friends. I have made it a practice to always be in eye and ear shot of any gatherings of Zach's friends when Sam is in the vicinity. Sam was off in his corner of the yard working in his "store" and sandbox. Brother and friends were playing their football on the trampoline. I was on the upper deck that we have, that overlooks the whole yard. Things were fine, of course, and I decided to step in the kitchen to lay some meat out. Apparently when I went into the kitchen. Sam witnessed Zach's two friends tackling Zach.

As we have pieced the story together, we believe Sam thought they were hurting his brother. Sam often confuses laughter as being other things, even anger or fear. According to Zach, Sam came charging up into the trampoline screaming "OFF! OFF!" and then pushed one of the boys. Now, mind you...Zach and his friends are almost 5 years older than Sam. Sam is 40 pounds, the other boys 70-90 pounds. Sam pushing one of them off of Zach is not a huge amount of force.

I enter the scene. But, I have to run down a full flight of steps and over to the trampoline. At this point, Zach is still laying on the trampoline from the first tackle, and now the other boys have started screaming at Sam and are laying on top of him pinning him down, as they are mad at him. Of course I am freaked as I am running down, as any mother of an autistic child knows what that kind of contact does to one of our kids. Sam was screaming a sound I had never heard. Needless to say, Sam's face was left with the imprint of the trampoline mat on his whole left side of his face.

Meanwhile, on my way over, Zach is screaming at them to get off his brother and pulls one of his "friends" off. That "friend" is furious with Zach and starts screaming at Zach and pushing him around. Next thing I know, Zach bolts out of the trampoline meeting me, crying and telling me to have his "friends go home, because mom, they hurt Sam and were so mean to him!"

I asked the boys to come see me (they are completely calm, acting like everything is fine), that we need to talk about what happened. In my head at the time, I felt I needed to explain what Sam saw when he looked at the trampoline, and how he thought he was protecting his big brother. The boys tell me "no" and continue to walk through our basement patio doors to go into the house to leave out the front door. I am like, "no they did not just tell me no, and not only walk away from me, but into my house". I followed right behind them to stop them at the front door. They would not stop, even with my pleading. I finally said at the front door, "Boys, you won't be able to play at our house again until we talk about what happened today and how to handle it next time." Both boys ignored me. As they left, Zach was hysterical. Crying and saying, "mom, I can't lose them as friends, I have to go say I am sorry, let me go mom". My heart was dying, and the next thing I know, is that Zach is flying out the door chasing behind them. He came back even more sad. Saying they told him it's "his brother" who always causes problems.

These situations have plagued Zach. We have tried to prepare his friends that come over. Every kid loves having friends over to play. Zach is resilient though. Thank God. His teachers always report how happy he is at school and how well he gets along with others. But dang it, the true friends are the ones that stick by you at school and away from school.

We are never afraid to tell people that Sam has Autism and are very open to explaining to people how to understand it and how to help their children understand it. However, people sometimes treat it more like they used to treat Cancer in the old days. Where they avoid it and you, because they don't know what to say. They don't explain it to their children because they don't think they will understand or get it, or that they just want them to see Sam as any other child. But...by not doing so not only effects the child with Autism, but also the siblings. And Sam is not just any other child. He has special needs that need modifications not just in IEP's, but in life, and his brother needs them too.

To deny that Sam has Autism, is to deny a piece of who he is. To deny that Zach is a brother of someone with Autism, is to deny a piece of who he is. Teaching how to accept others is not an adult concept. In fact, teaching acceptance has to start in childhood to truly attain an authentic appreciation of all individuals and who they are.

In my days as an elementary school counselor, I focussed a great deal on teaching children to appreciate differences on diversity of culture, ethnicity, socio-economic backgrounds, different abilities. In looking back...I don't think I ever encountered a curriculum or even thought about other family members and how the disability may effect them as well. Or perhaps how the siblings may encounter discrimination. Watching Zach grow in understanding his brother and how he explains it to others has made me very proud. He has learned so much from great resources like Sibshops sponsored by ARC. He is learning how to stick up for his brother. The fact that he was devastated at the way his friends treated his brother, and the fact that he is taking a stance with them in those situations will prove that even discrimination from some of his peers, will eventually lead him to people who are true and pure, and those real friends will last him a lifetime.

A Twist of Faith
2 Corinthians 4:16-18: "Therefore we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day. For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison, while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal."

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.)

Martian Child and Autism Acceptance (Journal #62)

It was a rainy day...a day deserving of making yet another appearance at our local theatre. Yes, even after last weeks attempt at "Mimzy", Disneys "The Robinson's" has been on our list for awhile. To add risk to this outing, our theatre was showing the digital 3D version. Let's just say that Sam gave it a big 2 thumbs up. But that was not the only thing that touched me at the theatre today...it was the previews. I was in tears during a preview for the first time ever.

Maybe I am a little behind the news, but I knew nothing of this new movie coming out in June, called Martian Child. You have already seen the trailer attached. I don't know about you, but this was screaming "acceptance" to me loud and proud. This little child, whether he is from Mars or not, sure does resemble a unique and special child who could be autistic or have Asperger's Syndrome. The lengthy trailer at the theatre displayed this adorable child in a manner that reminded me of some of the interesting, cute and quirky things that Sam does or would do. The way he examines his world like the boy checking out the trees in the car. How he appears to wear sunglasses frequently, reminding me of Sam's sensitivity that he used to have to light. The way the boy just wants to have a family and learn human"ness". I believe all our little ones are like that. I am telling ya, I had tears from the stupid preview, I can't imagine what the movie will be like.

But what I hope the movie "really" is like...is that it teaches the world a lesson on acceptance of everyone, not tolerance ( I HATE that word, we should never just tolerate others), but acceptance...acceptance for everyone- autistic or neurotypical, black or white, Jew or gentile, rich or poor, short or tall, skinny or large...but all.

The line that caught me in the preview was when the little boy says to John Cusack, "Is it good to be like everyone else?"

I can't wait to see this movie!

A Twist of Faith
With Holy Week here, I hope everyone is reminded of that incredible Savior who wasn't accepted nor tolerated and was put on the cross. Put there in fact, so that we all may live a life full of acceptance and love for everyone.

5 Alive!!! (Journal#55)

It's all about 5! Happy 5th Birthday Sam!

This is journal entry 55, it's Sam's 5th birthday, so I will honor him with 5 things he has given and inspired us with:

1. Sam has taught us how to accept everyone and love everyone for who they are. Even though I was a teacher for many years, I thought I knew everything about diversity, accepting others, working and respecting children of different abilities. But... I really didn't, until Sam taught me. He showed me that it is okay to learn differently, it is okay see life differently, it is okay to be you. And when you accept yourself, I have learned that accepting others comes even easier.

2. Sam has shown me that you need to take time for the little things in life. I am a "doer, gotta keep going, gotta get everything done, because you have to accomplish big" person! When you are like that, you forget to notice the little beautiful things in life. While Sam's incredible attention to detail can drive me crazy ( like when it is 30 below zero, and I just want to walk from our car into the store as quickly as possible, but he has to follow every little crack in the pavement or pick up every little icecicle along the way), it can remind you of the beauty life gives us. Perhaps it was our vacation to Yellowstone, that I really began to appreciate his ability to notice and find every little thing. I would be looking at the whole beautiful scenery on our travels, and it would be Sam that would stop me and pull me close to the ground to spot a little ant crawling up a beautiful flower growing along the path. It is the little things in life that help us get to the big things.

3. Sam has reminded me to take time to listen to the music. Again, teaching me to slow down and relax. Music has been Sam's thing since birth. Before we could ever understand one word from Sam, we always knew the tune of what he was humming. He can reproduce any sound (literally, including the grinding sound of our coffee machine) and any song after only hearing it once. Sometimes when he is in the middle of the worst melt down, I just throw on the IPod with some tunes (usually Backyardigans "Secret Agent"), and he completely changes and calms down (wish it worked every time). Many times, in any foul mood, he will turn it around as soon as he hears music. We all need to stop and listen more, and enjoy the music of life.

4. Sam has helped us accept autism. We are "at peace" with Autism, as Susan Senator so eloquently wrote about in her book, Making Peace with Autism. He has taught us that he is autism, he is autistic. It is a part of who he is. We can't hate Autism, because that would be hating a part of who he is.

5. Sam has given us 5 years of 4 L's. He has allowed us to love him unconditionally, to enjoy his laughter (even though we can't laugh with him), to continue learning about how he thinks and learns, and to live life fully.

We love you Silly Sam. Happy Birthday!

A Twist of Faith
As I said, Sam has taught us how to love even greater with acceptance like no other. No other, than like that of Christ's that is. Look up His greatest commandment again, remind yourself of what He calls us to do. For if all people upheld this scripture, it would be an easier place in this world to have Autism, to be a parent of an autistic child, to not worry about being judged by others on how we take care of our little boy in a world that can seem so overwhelming to him most of the time. John 13: 34-35