Reduce, Reuse, Recycle...(Journal#78)

We pulled in the driveway from our trip to the store. As I get ready to push the garage door opener, a screaming shrill of excitement rips through the van. Sam sees it by the front door, left there by our UPS delivery driver.
"Bots, my bots mom" Sam screams.
"Bots, my bots, my bots" he continued as Zach and I unbuckled and went into the house.
"Det my bots, det it!.
"Sam, let mom bring in the groceries and then I will get the box," I said trying to calm him and to get us in the house first.

Most kids are excited about boxes, yes, I agree. Especially when they are babies. They always love playing with the boxes their presents came in rather than the present itself. Sam has stuck to this action since he was a baby.

Reduce...I wish we could reduce the clutter sometimes that Sam accumulates. He would have his room full of boxes and other "garbage items" if he always had his way. He tapes the boxes together for his creations with our blue painters tape. An important staple in our house.

Reuse...Once Sam has recovered a box from the garbage or recycling, he reuses it over and over again. Creating one masterpiece right after another. It is amazing watching what his little mind comes up with. The challenge is that no one can touch it or come near it for days. And if you even bump it, look out!

Recycle...We can't throw ANYTHING away. He actually goes to the garbage in the kitchen a couple times a day to see if anything of value has been discarded. When he finds other objects of interest, he then takes them to his box sculpture and tapes them on with the blue tape. This is a daily event at our house. This child can recycle and make use of anything.

While boxes can become irritating in our house because of the way Sam can take over our house with his box sculptures, they are an incredible blessing. They are a reminder to us to reduce the attitudes that clutter our minds, to reuse the things in life that make us happy, and to recycle and share those moments with loved ones.

A Twist of Faith
I love the saying that "God doesn't make junk". He makes use of everyone and everything on this earth. He is the great recycler. If we just reduce the focus on ourselves and recycle the love He gives us everyday, this world would be an amazing place. Recycle meaning to witness and share with everyone!
"Put out into deep water, and let down the nets for a catch" Luke 5:4

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)

Down Time...(Journal#70)

Have been taking some time off from blogging lately, as that is where I have prioritized some down time. Just been busy with end of the year routines for the boys with a transition to summer activities and planning. While we still have a week left of school, we have been working on IEP's and kindergarten transitions, summer therapy coordination, and big brothers soccer season starting!!!

Here are some updates on plans that have been made for Sam this past month....

Sam's plan for fall is a mainstream classroom for a little more than half of the time, continued OT and Speech therapy at school (pulled out for), and pull out to a special education classroom for the rest. We will also have some aid support if needed (ESP or para's as we call them). Sam is incredibly rule and routine structure bound. Once he figures out the routine of the day, he does exactly as he is scheduled. Where Sam struggles is in learning. His fine motor delays effect his handwriting. His speech effects the way he hears, understands and learns sounds. Phonemic awareness is key to beginning reading, and with his articulation disorder, that will make all of those pre-reading skills a challenge. Hence, this summer we are hitting it hard at home. But back to the fall....our district is still only half day kindergarten, so he will attend PM kindergarten.

Beginning in two weeks, Sam will be transitioning to a new speech program for the therapy we seek privately through a hospital here. For the last two years, he has received a half hour of speech two times a week individually at the clinic. In the new program, he will be one of 4-5 children on the spectrum with two speech/language therapist at the clinic. They will meet now for 2 hours twice a week in the mornings. He will continue in that program straight into and through the next school year. The first part of each session will focus on social skills and language through play, crafts, and learning, and the last half will focus on their individual speech goals. This will be great for Sam and will also work towards many of his IEP goals for school. In settings away from home, Sam has to be cued for everything. His IEP is loaded with goals of simply initiating words with peers to making requests from teachers, etc...We are excited about the new program "outside of school", as it will prepare him nicely for kindergarten in the fall.

This summer, Sam will have the speech program two morning a week, and four afternoons a week will be filled with t-ball and soccer. These are both programs that Brent and I will be able to help him with on the field if needed because of the age level. Our parks and recreation programs are great about adaptive play for special needs. We are excited to see what Sam does. His cleats and shin guards, and glove and hat are ready to start in two weeks!

I will try to update and post about 2-3 times a month throughout the summer. In Minnesota, we have to be outside as much as possible to enjoy the weather during these months, so that means a lot less time inside near a computer.

A Twist of Faith
So down time from blogging has still left my mind twirling with things to write about in relation to Sam and Autism. I have started about 10 posts in my head and as drafts, but down time on the computer is more time with family right now. That is always a good thing.

Just like our walk with faith. God calls us to use our gifts and to serve Him. Sometimes we need down time in one area of our church and faith life, but that doesn't mean we sit idle. It means we pick up our faith and church life in another area. It is about using every thing God has given us to serve Him, and that means different ways of serving, not stopping completely or not doing at all, it means just doing it differently. God is never done using us, for Him there is no down time.

As each one has received a gift, use it to serve one another as good stewards of God's varied grace. ~ 1 Peter 4:10

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."

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!

Rated S.O. (Journal # 61)

As I have stated in earlier posts, we have learned to do a lot of things in our family in pairs. Zach and Brent do an activity while Sam and I do another activity. This, mostly because we want to respect Sam's needs and how he will handle certain situations. We have learned that there are some things that we won't try to do as a family because it would be too much for him and one of us would end up leaving with him.

However...family time is so important for us, that we have forced Sam to like a couple areas that the rest of us love, for the sake of doing it as a family. One thing we do "as family" is make sure we hit every family feature film as soon as it comes out. Sam has learned how to handle the previews. He covers his ears and then has me put my hands over his for extra support. The next time you go to the movies, check it out...the previews really are louder than the movie.

This past weekend we hit the theatres, with me convincing the men in my family that "The Last Mimzy" was a better choice than "TMNT (Teenage Mutant Ninja Turtles)". Uggg, being the mother of boys. Well my charm won all three of my boys over, and I got my way (or did I?).

This is a warning to all parents of autistic little ones. "The Last Mimzy" is not autism friendly. Sam and I had to leave a little before halfway through. For our little ones that deal with a lot of sensory issues, this movie has them. There are lots of flashing lights, blue and white to be specific. Along with the flashing lights of Mimzy's gear comes a high pitched hum whenever the Mimzy stuff communicates (which is a lot). It was just too much for Sam. So, instead of just rating this movie PG, it should also be rated S.O. for sensory overload!

On a side note. I didn't want to leave. I had loved the movie up to that point, and it also received high reviews from Zach and Brent, so on a personal note, I would still recommend this movie (just not for our little ones who already have sensory issues).

A Twist of Faith
Sometimes we learn through trial and error. I don't believe that it is error in having Sam learn to enjoy the things we like as a family at times, as he is part of our family. God created us to be together as a family. Just as we are learning about his world, he too is always learning about ours. What was an error was us not really checking out the reviews for that type of setting.

Let us consider how to provoke one another to love and good deeds, not neglecting to meet together, as is the habit of some, but encouraging one another, and all the more as you see the Day approaching.

-Hebrews 10:24-25 (NRSV)

The Candle (Journal #59)

The thing that I had decided since Sam was 2 , was that he was going to learn to talk, he was going to use words and not screams to communicate. From age 2 to 3 years, there wasn't a whole lot of progress until we received our autism diagnosis around 3. After learning everything we could about autism, I then decided that, not only was he going to learn to talk, he was going to have receptive and expressive language, joint attention , as well as reciporcal language, some of the most challenging speech areas for our little autistic ones. I did/do my own form of "ABA" therapy. I have been in his face, making him repeat (without rewards), having real conversations but by telling him what to say, making eye contact if it meant making my eyelashes touch his, all of this "in your face" method since he was 3.

Sometimes I don't know what he remembers, or how much info is too much or too little for him to retain. But this time he conversed with me about something I didn't know he knew. My little sister died 4 years ago at a mere 31 years. Sam was only 17 months at the time. I keep a picture of her with each boy in their rooms. For Zach, I want it to remind him of the times he had with her. For Sam, it has been there so that some day I can share with him who she was. He doesn't remember her of course, but he too has the picture in his room. I can't remember when I have said anything more to him on any occasion other than she is my sister. I know he remembers a lot, and maybe he has heard conversations with Zach and I, but last night was the best.

Last night at dinner, we were lighting our (electric) candles as we do each time we eat for someone we need to pray for. For the last three months, Sam has lit a candle for a boy in his class. He says the boys name every meal.

Last night he said to me "tee tandles" (three candles).

Who are your three candles for Sam? I asked.

"bantie" (the blanket his Aunt Darla made got wet today and he was very upset about it).

"Neal" (the boy in his class)

"mommie's titter" (mommies sister).

Sam, why are you praying for my sister?

"see died, in heaben" (she died, is in heaven).

He broke my heart with happiness. Maybe he understands so much more than I ever give him credit! I love him!

Below are pictures from the last time he spent with my sister before she passed away.

See my Tabblo>

A Twist of Faith
Philippians 1:21 "For me to live is Christ and to die is gain."

A TV finish! (Journal #27)

Todays post is not about autism, and it is not about Sam. It is about our adventurous day. While we are still missing Sam this week, it has been so much fun being able to just do things without too much planning and transition. Today Zach and I were able to take in some golf. After teeing off on this hole, he yelled to me,

"Mom, look at my TV finish!"

"What?" I asked.

"My TV finish, you know, like what Tiger Woods looks like after a great shot. That was a good shot, wasn't it mom?"

I started laughing. It really was a great shot. We only played at our little executive course at Eagle Lake with mostly par 3's, but he hit a beautiful shot with his 5 wood and got on the green. We ended up playing for wins for each hole, and mom beat him 5-4. :)

This afternoon he has piano and a test piece he has to pass for Sylvia. After that we are finally going to see the movie Hoot. Zach has been wanting to see it. We were hoping to read the book first, but he is into another series of books, where the characters are owls also.

Tonight we will relax...call Sam...call dad...read...and sleep.

"Not a cure for autism, but an intervention" (Journal #26)

It will be hard...this week because I will miss Sam big time! We just returned from taking Sam to stay with my wonderful mother and father-in-law this week. We, meaning Zach my 8 1/2 year old, our dog, and myself.

Missing is "our rock", dad, this week. He is in Boston for business for 6 days (and enjoying the Red Sox tonight, as he called to brag that he is in the sky box behind home plate, WHATEVER! :)

Brent's mom knew he would be gone all this week so she called and offered to take Sam so I could have a little breather (Zach is finally at the low maintinence stage). She very quickly said "not that Sam is a handful", but I know what you meant Jan, and appreciate you being nice by giving me a little time with Zach. So...we left at the same time, her from Iowa and us from Minneapolis, so we could meet in the middle, and it worked pretty good this time. The boys took in two movies on the way (THANK GOD FOR DVD PLAYERS).

Soooooo.............it is ALL Zach time this week. Here is why I need to be with Zach this week, alone. Zach was 4 1/2 when Sam was born. He was essentially brought up as an only child since it took us so long to have Sam. He was used to a lot of attention and nurturing. When Sam was born, it didn't change a whole lot for him until about the time Sam was 8 or 9 months.

Sam was an incredible baby up until the 8/9 month time span. Very, very content. Never fussed except when hungry and needed changing. Went to bed great. I do always recall though, that he would rarely keep eye contact with me, or engage in joint attention. And didn't care so much about nursing and the whole bonding idea. He was fine being left alone. I noticed it so much, that I hardly ever left him alone or gave in. Sometimes he would fuss when I would pick him up. He would arch his back when I layed right next to his face with him on the floor. So, instead of letting him win,on his desire to be left alone, I brought his carrier car seat in and used that to drag him with me to literally every room in the house. He may have wanted to just hang out on the floor somewhere or in his bassinet, but I made sure he came with me wherever I was (ironically he never liked his "snuggly", and I couldn't always hold him if doing stuff around the house).

At 8 or 9 months, when he was starting to roll over, or attempt it, some fussing started. Soon thereafter, he started to need a lot more attention, but now looking back, realize there were lots of sensory issues and reasons for his "neediness".

The first things that would make him smile were his brothers crazy antics on the floor with him. Zach would lay with him (and Sam WOULDN'T arch his back as if to get away) and put his hand on Sam's tummy and rock him from side to side. It would tickle and make Sam laugh so!

As Sam became increasingly more mobile and was starting to pull himself up more (13-14 months, didn't walk until 18 months), Zach started to realize that this was a little brother in the making. Zach would go and lay on the floor on his back, and pull Sam on top of his belly. Then Zach would wrap his arms around him tight and pretend to wrestle him. Or Zach would lay his own head on Sam's tummy. Sam would scream with joy. This was their way of bonding. Wrestling is still their main mode of communication today. We later learned from our OT, that Sam's Sensory Integrations issues are what probably causes him to seek those "deep pressure" moments. He can always count on his brother to give him that satisfaction he so needs.

I mention all of this, because even though Sam and Zach are really starting to develop an incredible relationship, it (the autism connection) has been very challenging for Zach. In recalling Sam's first 3 years of life (until we received the official educational and medical diagnosis), I knew in my gut that it was autism, but not in my heart. So the first 3 years was a lot of blaming, confusion, and frustration with myself and how Sam was behaving.

Sam had major sensory issues, from needing socks at all times, to the way blankets covered him, to lights, sounds, smells and even where we were standing in relationship to his body (often times too close). Because of Sam's lack of communication (that was unintelligible), all he did was scream to communicate. If Zach came within 10 feet of him, he would scream a blood curling dinosaur scream, as we called it. If Zach put on his gorgeous smile that said, "I am going to wrestle you", and put his hands up, as if to tickle him, then Sam would laugh. But that was the only way Zach could gain acceptance with Sam.

The way Sam would play was also very confusing to Zach. Sam didn't really start to attempt with any toys, even appropriately until this past year. And that is only because of the amount of intense therapy, floortime Brent and I have spent, and constant interaction with him every time he is playing.

Sam used to just line EVERYTHING up. Usually ordinary, non toy objects. What would cause friction with Zach and Sam would be when Zach would come into a room, not knowing that Sam had been lining up the shoes for the past hour. Zach would simply go and get a pair of shoes to put on (from the ongoing line), and of course Sam's world was crushed as he knew it. Zach had just ruined his work of art. Screaming, kicking, hitting, throwing of every oject in reach...............this was the TYPICAL routine of Sam following these episodes.

Zach made his big breakthrough connection with Sam exactly (well almost) a year ago. I will NEVER forget it. Zach was trying so hard to play with Sam (of course all big brothers dream of having a little brother to play with) in the front yard. Sam was sitting in the grass "arranging" some Rescue Heroes. Zach desperately wanted to play, but at every attempt, Sam would just do the "dinosaur scream" and Zach would take a few steps back and approach again a little later. Zach, after several attempts, in all his frustration, finally dropped to his knees right in front of Sam and said, "Okay, Sam, then just show me what YOU WANT me to do. Show me HOW YOU WANT me to play with the Rescue Heroes. YOU SHOW ME Sam!" And that was Zach's ticket in. He learned that instead of playing the way he himself wanted to play with Sam, that he (Zach) would play the way Sam wanted him to play. IT WORKED!!!!! Pretty good for a 7 1/2 year old. And...even though it is giving in to Sam's routines/rituals/ways, we don't care! It has helped increase their playtime.

We have been keeping Zach informed of every step with Autism. The poor kid has to know, he has to be a part of the therapy, he has to wait in waiting rooms with me each week. He needs to be very much a part of us and autism. We have talked with him, read him books about autism, had him read books about autism, watched shows about autism. All this to begin to help him understand his brother. This past week fused some anger in Zach. Sam couldn't communicate to Zach exactly what he wanted. Everytime Zach would try to interpret, it would lead to the "dinosaur scream" followed immediately with thrown objects. Zach left the situation very upset screaming himself, "I WISH SAM DIDN'T HAVE AUTISM!!!" My heart dropped.

To top it off, last night, Zach and I were watching "Medical Incredible" on the Discovery Health Channel (our family is big into Discovery Channel stuff). They did a preview of tonights episode that featured an autistic boy being "cured"! Zach quickly, with a smile and bright eyes, turned to me and said, "we can cure Sam mom?" "Mom, can we?" as he smiled ear to ear. I thought the show might be about chelation therapy. Something Brent and I will never consider.

While Brent and I have made acceptance and peace with Sam and his autism, it is very evident that Zach is on a different page. He is a child. A beautiful boy, enjoying the summer before his 3rd grade year. An intelligent boy in talented and gifted programming. A curious boy, who wants to understand his brothers brain. A boy who dreams of being a scientist some day.

I stuggle with all of the controversy in the autism community around the word "cure". I struggle just because it seems to tear apart. I have been amazed at the way the "mercury parents" can leave such hurtful comments to parents who choose not to seek cure, but acceptance. I appreciate those who don't judge, but encourage peace, acceptance and understanding, like my friend Kristina at Autismland, or the new Autism Acceptance Project, having its first lecture series in October in Canada, founded by a mother of a son with autism.

I struggle, not just from the controversy, but the own battle it has in my own mind and home.

What if...
... I didn't have to worry about Sam's safety in the busy city that we live in?
What if...
...I didn't have to do so many things for Sam in the same order with the same person who did it originally?
What if...
... I didn't have to worry that he wasn't developmentally delayed with speech and his fine and motor skills?
What if...
... I didn't have to worry about his life skill abilities when he is an adult?
What if...
...I didn't have to worry about how Sam will be taken care of if something happens to Brent or myself?
What if...
... I didn't have to worry that other kids may do something harmful to him because he doesn't understand when they are making fun of him?
What if...
... he could play with his brother who loves him so and they could grow up doing things together?
What if...
...he had a brother who didn't care if he was cured from autism?

See, what I am worried about, is that we don't blame autism for things in our house. We don't ever use that language. We are not afraid to tell people that Sam is autistic. We have to tell Zach's friends that Sam is autistic, because some of them have been starting to distance themselves from Zach and some have told him that "his brother" bothers them. Sam still screams a lot. Sam repeats things a lot, especially around Zach's friends when they are new, and Sam is trying to understand them in his way. They find it annoying. Not just annoying like a typical little brother situation, but annoying that they don't understand him, but annoying that he screams a lot, annoying that he talks loud, annoying, etc...

We have told Zach's friends and then have immediately followed it with "this is why he does this, because he is trying to tell you this....", etc...

We want people to accept Sam and his autism. To tell people he is just Sam, is to not identify who Sam is. Sam isn't his autism, his autism isn't Sam. He is Sam with autism in one. To only identify him as Sam, is to identify only part of who his beautiful mind is. We only know him with autism. We still need to explain to Zach how Sam is one in the same. Zach is only an 8 year old. He is only human.

I too have thrown up my arms and thought, "Damn autism!" Those times when Sam won't accept the answer I give him because it is not what his ordered thinking can hear right now. So he repeats and repeats the statement over and over, getting louder and screaming until the dinosaur comes again, until he gets the answer that fits for him. And yes, if there was a way I could get rid of the behaviors that cause harm to himself, others and objects, I would want that intervention. But that is all I would want...an intervention. Something or someone to step in and help change the course for that moment. Something or someone to step in and allow a "breather".

Brent's mom is my intervention this week. It is going to allow me time with Zach. Time to explain Sam and his autism a little more with just him and I. Time for me to give Zach some much needed time with a human being.

A friend was trying to comfort me last week, when I was feeling guilty about the time we physically spend caring for Sam (and not always Zach). She told me we do stuff for Zach "you let him play soccer, you take him to piano, you do this, this and this for Zach. Zach gets to do lots of things".

But you see, "things" is the keyword, I compensate actual bonding, together time, to keep Zach happy by keeping him busy doing "things" he likes and giving him a break when life gets too much for him with Sam. That is not the same as spending quality time that can never be taken back.

I can not tell you how excited...

...I am to have this week and house all alone with Zach.
...I am to listen to him read his latest book series Guardians of Ga'Hoole that he is into, up in the new treehouse.
...I am to go to a movie with him.
...I am to go for bike rides with him.
...I am to just sit at his soccer practice and games for a change and watch HIM.
...I am to just sit and have a quiet meal with him.
...I am to go golfing with him.
...I am to let him just talk, and talk, and talk to me (which he does so well, he has my mouth!)

...I will be when the two of us and our dog Chicago, make the journey back to Iowa to meet with Sam again!!!! And to rush straight back to the Minneapolis/St. Paul International Airport to pick up dad and be a complete family again!!!!!

Thanks for the intervention Grandma Jan. Much needed, much appreciated, much loved!!!!

A Tribute to our Rock (Journal #25)

He is my high school sweetheart, best friend, my confidant, father of my children, and the rock of our life (2nd to God of course). With Father's Day approaching, I only feel it appropriate to honor the man who keeps my life stable, who keeps our family grounded and as solid as a rock.

Brent has always been a partner with parenting. I am amazed at the stresses he has with his job, his travel time, his long hours, yet his devotion and time that he commits to our family and to our boys.

He has been a part of every Autism step, from Sam's diagnosis to where we are today. From taking days off of work to take Sam to the day long assessments with the psychologists, occupational therapists, speech therapists to name a few. We went through all of the emotions together following the first diagnosis, the second and so on. He is so in love with his boys and yearns to be with them when he is away on business.

Brent has helped to keep our life normal, and to help when I have been frazzled when he returns from a week away. It is nothing for him to come home on a Friday after a trip and tell me to "get outa here" and go scrapbook at my favorite store in the world, Archiver's.

What I love about the way he works with Sam and his Autism...
...I love the way he responds to Sam and the way Sam responds to him. The way they they say goodby in the morning to the way the greet each other when he returns. Sam always needs a "tiss" and "hug", even if it is the one that Sam gives when he doesn't want to touch. He crosses his arms across his own chest, patting it, saying "hug". Likewise, his "tiss" is Sam kissing his own hand several times but looking at dad to do the same.

...I love the time he spends working on our home therapy with Sam. Here he is working on Sam's speech words that we do every day. Sam loves to be tight and have our legs wrapped around him in the "green chair". Sam has a cute way of getting the picture card after saying the word correctly, then placing it through daddies leg (the tunnel) to Sam's lap, where he then puts it in a special baggy (Sam has this thing for baggies).

...I love how he will do anything for Sam's safety. We have ongoing problems with Sam just leaving the house anytime of day and night. After a recent incident where Sam wondered into the garage in the middle of the night, Brent had a security system installed within 48 hours.

...I love how he keeps his time balanced between the two boys and creates very special times alone for our older son, Zachary. They love sneaking away for long bike rides. Their favorite times together are Saturday mornings at Caribou coffee (there for hot chocolate) where they enjoy playing checkers and Stratego by the fire.

...I love how he took the time this past month to build a treehouse for the boys, and a getaway for Sam (who will spend hours in our back yard). This was a huge deal for our "pencil pusher" dad, who surprised us all with his Home Depot purchase power and carpentry skills. He made an 8 X 12 monster of a play setting!!! Right amongst the birds (Sam's biggest obsession right now).

...I love his patience with Sam during his melt downs. If we have to restrain Sam, he does it with such gentleness and love, to keep Sam from hurting himself, others, or the typical objects. You can see the concern and care that Brent has at these challenging times. His face is that of utmost love and compassion. He truly wants to understand his Sam.

...I love that he is the father of my children.

Happy Father's Day to the love of my life. Thanks Brent for always being our ROCK!!!!