Plan B...(Journal #50)

Sensory needs and issues are big with our little ones with Autism. Things that would barely bother us can be extremely distracting, soothing, hurtful, or helpful to children with Autism. While we didn't understand Sam's sensory issues early in life, we quickly learned more and understood them after finally getting the Autism diagnosis.

So, to include Sam in everything we do, means we always need to have a "plan B". We are not being mean by taking Sam to most everything with us, even if we know he will not be able to stay or attend the event. We are simply trying to help him experience all of life that he feels comfortable doing.

Until about 6 months ago, Sam hated indoor playgrounds like the McDonald's Playplace, or for us, our hometown Maple Maze as I wrote about in a previous post. If I would not have made him go once a week for the last year, to expose him, and to encourage him a step closer each time, we would never be able to see the smile and excitement that he now has for playing at them. And, for children with Autism, exactly what they need, the opportunity for casual interactions with peers. As my friend at Autism-schmatism has shared, you keep trying.

Our intentions were good. We still wanted to include Sam, as the one thing we are still determined to do, is be family. To do everything we can together, but just in a different way sometimes.
So we tried....
Plan A- We loaded up the car to go downtown before Christmas Eve. It was the last night of the Holidazzle Parade. We had not been to it for almost 4 years, and Sam had never gone. We thought we would make a night of it. We would first go to the Macy's display, where they have an animated holiday display every year on the 8th floor of the downtown Minneapolis Macy's store. As we trekked all the way up to the 8th floor, we soon found out the line was an hour and a half wait. Sam was already twirling and pulling away, wanting to run. Plan B is now implemented. We would go back down to skywalk level, eat supper at dad's favorite, Potbelly's, then go and find a good curb spot for the last night of the parade.

Should have known that things would need to switch to a Plan C while eating, or not eating in Sam's case. Lot's of people busy getting last minute gifts. Potbelly's is all glass, facing into the IDS Tower, the tallest building in Minneapolis and a center for activity, especially before the parade. Brent and Zach sat at a differnt table than us, as Sam was angry and had ran and head butted Zach in the back for no reason. Zach was hurt so bad he was crying. I took Sam to eat at a table where he could not see Zach, as poor Zach was his target, and Sam just wanted to kick and scream at him.

Sam was back to no words, just growling and screaming. He pushed away (onto the floor), each food I tried to give him. He finally ate two pretzals, and drank two sips of pop and done. Plan C started. I told Brent to have him and Zach to finish and then meet us on the plaza level, as I would walk with Sam and let him watch the water and people. We walked and walked.

Brent and Zach joined us. Sam seemed to be smiling and was excited about going out to the street to prepare for the parade. We made our way down a few blocks to finally find a curb spot. It wasn't too cold for a Minnesota evening. We thought we had settled in for our short wait. Sam continued to have a hard time staying still, and the crowds were starting to thicken along the route, making it even harder for the little guy. Plan D- Brent took Sam for a walk until it started.

As the parade got closer, Zach was full of excitement. He had started to remember a little what it was like. It is similar to the "Electro/Lights" parade at the Magic Kindgom. Every person and float is solid lights in the parade. As the parade got closer, Sam got more uncomfortable. After the first float, full of lights and music came by, Sam was done. The sounds, the lights, the thousands of people were too much for our little guy.

Plan E- I take Sam back through the skywalks to the parking garage until it was over. The walk back included two scenes of him just stopping and deciding to lay flat on his back. He is not screaming or tantruming when he does this, he just lays there and looks straight up. He does this every once in awhile when we are out. I have gotten so used to it, that I just kneel beside him and talk to him until he gives me that look like he is ready to go. To others it can look like he is having a tantrum or is hurt. It is always interesting to watch how people react. React, but not respond.

Plan F is for Brent and I. It is our plan, that even though these outings can be exhausting for us, and it doesn't always go as planned, that our final plan is that we will continue to keep Sam a part of our world, while respecting his.

We will continue
~ to do things as a family whenever possible
~to never be dissapointed with Sam, but maybe dissapointed with ourselves if the plan wasn't well thought out
~ helping Sam adjust to his world in little doses
~ to have a "plan B"

A Twist of Faith
Things in our life never go as planned. We have disappointments and celebrations. Often times these things occur when we least expect them. The one thing that is for sure, is that we can trust God to lay out His master plan for us, and that no matter how we journey down that path, He is always there, even during the "plan B's".

It was because the Lord loved you and kept the oath that he swore to your ancestors, that the Lord has brought you out with a mighty hand, and redeemed you from the house of slavery, from the hand of Pharaoh king of Egypt. Know therefore that the Lord your God is God, the faithful God who maintains covenant loyalty with those who love him and keep his commandments, to a thousand generations... ~Deuteronomy 7: 8-9 (NRSV)

Happy Hanukkwanzimas! (Journal#49)

To all of my friends and family who celebrate this time of year in many ways, Happy Hanukkah, Kwanza and Merry Christmas! I owe the title of this blog to Mr. B, a retired teacher in the school I loved teaching in so much "Sandburg Middle School", who coined this phrase into an awesome song one year at a staff breakfast! He was the funniest, craziest teacher I've known, who loved the alternative education tweens that I taught, even though they were outcasts in the mainstream classroom. He was able to bring all people together with laughter, no matter their differences, religion, color of skin, attitude, ability, ethnicity, background, socio-economic status, etc..........

To all the Mr. B's out there that will embrace all children they teach, and who help people to accept one another...you will be the teacher's, that will make the world our children with Autism enter, an easier one. Thanks Mr. B!

A Twist of Faith

So we are all different, including our kids on the autism spectrum, but we all can be one in the spirit and working together to make this a better place for everyone during this meager time on earth. Everyone is a gift from God with a special gift to offer.

"There are different kinds of gifts, but the same Spirit.”

~1 Corinthians 12:4

More than impressed...(Journal #48)

One of our greatest fears for Sam finally occured. As with many children with autism, the "fear factor" is minimal. Sam has always been fearless. That means street safety, heights safety, running safety, and the many other safety scenarios that don't exist in Sam's world. We have taught these things to him until we are blue in the face, we have used social stories, pictures, etc...

Our greatest fear has been that he would break a bone in the very near future (of which we have been surprised it didn't happen sooner), and our little guy did just that :(. Sam and his brother were so excited to see our visitors, that they were both literally running all over our wood floors. Let's just say that sleepers with feet + wood floors + running boys = disaster. Sam took the wipe out of his life.

One thing that I have learned in the Autism Bloggers ring, is that there are a lot of medical communities that are very unaware of how to work with children with autism...and to those friends, I truly do care and wish there were better doctor visits and opportunities.

However, Brent and I are more than impressed with our experiences in Minneapolis and the Twin Cities over the last two years with Sam. I have shared many times our love and trust for our pediatrician. And now, after Sam broke his "humorous/funny bone" (but it really wasn't funny) after hours, I have an even greater respect for our expanded medical community.

After Sam hurt himself, we weren't sure if we should go or not. As with many children with Autism, pain is part of their many sensory issues. For Sam, he doesn't respond to pain, rarely. So when he is crying continually, you know something is up. This he did. We loaded his little body into the van and decided to take him to Children's Hospital in Minneapolis. I have expressed in previous posts, that even while Sam is more verbal, he still can't always express his needs or hurts in detail. Often times, when he is hurt, he actually gets mad at that body part and will hit at it and hurt it more. So, when we arrived at the emergency room, I told triage right away that he was autistic. They were AWESOME! The wait was minimal, but they wanted to transition him as smoothly as possible. The doctor we had was great, compassionate and understanding of Sam's needs as well as hurts. The nurses and X-ray were incredible in the way they allowed Sam to transition from each event and to work with him. We are very grateful.

So, since they felt Sam's fracture was going to continue swelling, they did a partial cast, and the doctor referred us on to Gillette Children's in St. Paul, where we would see a pediatric ortho doc in the next couple days who would re-examine and recast his arm. We had that exprience today. I told the nurse ahead of time that Sam had autism. We found out later, that the doctor knew before our arrival as well, and changed the "usual" check in routine to make it easier for Sam. When arrived, the nurse couldn't figure out why they had cancelled him going to the height and weight check in (which takes place in a different hall and room), and why they had cancelled a visit with the doctor (which would take place in a different room), and why Sam was to be sent straight to the casting room where the doctor would see him there?

The nurse was very confused and said things had never been done this way before. However, she still took us to the casting room. When the doctor and his staff arrived, he was so gracious to explain that he wanted as few of transitions for Sam as possible to make the visit go easy for him, which is why he changed the "usual" check in procedure. Wow, I was impressed immediately. They put in a Nemo DVD right away, and his staff started interacting and entertaining Sam, so the doctor could explain everything again from the x-rays and the new cast that was being put on. I was more than impressed.

A Twist of Faith

Sam is doing great. He even went to see Santa for the first time in his life today before getting his new, bright green cast put on. Brent and I were more than impressed with Sam and his response to this whole situation. We are so proud. He did great!!!! So, I spoiled him today. He got a couple things he wanted, even with Christmas in sight. Oh well!!!! He has been freaked out by Santa the past 4 years, so we have never pushed it. We don't make a huge deal in our house about the Santa thing anyway, as it is a part of the Christmas Celebration for us, but it isn't THE Christmas celebration for us. But still, Sam surprised us in wanting to sit on this stranger's (from who knows where) lap. Sam continues to impress and amaze us each day. However, this is nothing compared to the impression God has had on our lives through this journey with autism.

Joshua told the people, "Consecrate yourselves, for tomorrow the LORD will do amazing things among you." ~Joshua 3:5

It's Official, or is it?

President Bush officially signed the Combating Autism Act today. Just wonder if there will really be the dollars to back this bill? We'll see................

Here's some of the coverage when it passed house and senate earlier this month:

ABC's coverage

We'll see what kind of coverage it gets tonight after the President signed it.

Just hoping for some good research to deal with insurance companies!

A New Place (Journal #46)

He found a new place, and I wonder if it will stick.

Living with a child with Autism finds a family learning to adjust to (and many times prevent) routines. Routines are not bad for children with Autism, as it really is a means to keep their world stable and predictable which is important for them. Here is a piece written on an Autism Association site from Austrailia that explains it:

People with autism often insist on following routines or rituals, and can be distressed over changes to small details of the environment, such as wanting to keep to the same route to the shops or eat dinner from the same plate. They may strongly resist attempts to redirect them from these behaviours or to change their routines. It is thought that people with autism feel tremendous anxiety at the unpredictability of daily life, and these rituals and routines remove some of the uncertainty for them about what will happen next.

Routines can only be a challenge when they effect the whole family, which can be frequently, so I have learned to pick those battles and let the other times fall to the side, both for Sam's sake and ours.

So, yes, he found a new place.

Sam has a rigid lunch routine on school days, as I have said before. Coat off, up steps, sit at table with plate of pancakes already prepared (thank goodness for Pillsbury Whole Grain), eat, wash face and hands, done! Of course this routine started by me having his lunch ready one day a year ago, and then it has to be the same. Yes, at lunch, I have given up on variety...pancakes every day is his need or look out. We take advantage of him knowing that supper is the time the food changes.

Yesterday, I broke the routine and now am going to pay for it. It was a rainy, drizzly day. I was trying to finish Christmas cards and had a place set up in the basement on the couch. I thought it would be fun to have Sam eat lunch on a TV tray down there with me by the fireplace, and then thought we could snuggle and take a little nap together before heading out to speech therapy. Well, the plan worked great. He loved being downstairs with mom and eating on the TV tray. We have also made it clear to the boys in the past, that we only eat on the TV trays for special times. So, I told Sam that it was a special time.

Today...lunch time. Ooooooops! I knew it might come back to haunt me and did it ever. I made lunch for Sam and I (no, I do not do daily doses of pancakes, just the lad) and placed it on the table. He did not have school today, so normally the lunch routine is really only eating pancakes. He would have no such thing as eating at the table with mom. He was going to eat downstairs with a TV tray. A huge tantrum that included kicking me and throwing things ensued. I had time today to deal with the tantrum for however long it took, as we didn't have therapy today. I really felt like I had to fight this one, otherwise, he will eat down there for every meal, knowing how he sticks to routines once introduced or changed. After I got him calmed down, I let him lay on a kitchen rug, which is what he likes to do when he needs to calm down. I turned around to finish preparing my lunch (his was already on the table). When turning back around, I saw it was gone, and so was he. I thought, rrrrggggggggg, he went downstairs. He did not. He went to the couch in the next room (which is normally a big no, no) and was actually laying on his side with his head down on the couch eating. I walked in the room to tell him to sit up so he wouldn't choke, but of course did not need to, as he growled at my presence and sat up, as if to bark me away. I smiled, and I think he kind of wanted to smile back, but didn't. I decided it wasn't a battle worth diving into today. We have a busy night planned running brother around to piano and youth group, so I decided that his routines were going to be broken enough today. Let it rest.

My only concern about this lunch routine...is this a new place to eat?

A Twist of Faith

I am a proud member of the Disciples of Christ. We practice communion every Sunday welcoming everyone to Christ's table. Some people say, "Doesn't communion become routine and lose meaning when you do it every Sunday?" I always respond with no. I can hardly wait for the chance. It may look like the same communion table each week, but it is always a different reason and a new chance for forgiveness and newness. It is always a new place to eat.

While they were eating, Jesus took a loaf of bread, and after blessing it he broke it, gave it to the disciples, and said, “Take, eat; this is my body.” Then he took a cup, and after giving thanks he gave it to them, saying, “Drink from it, all of you; for this is my blood of the covenant, which is poured out for many for the forgiveness of sins. I tell you, I will never again drink of this fruit of the vine until that day when I drink it new with you in my Father’s kingdom.” ~ Matthew 26: 17-30

Combating Autism Act

The Combating Autism Act finally passed today in the House.

The Autism Society of America sent this brief summary of the Act to its members in an e-mail today:

S. 843, authored by Sens. Santorum and Dodd, first passed in the Senate on August 3, 2006. The legislation contains many important provisions to strengthen autism research and diagnostics, including a renewed investment to track the incidence and prevalence of autism spectrum disorder; to increase public awareness of early identification; promote the use of evidence-based interventions for those at higher risk for autism; and establish state-level clearinghouses for information on autism. For the first time, this legislation also calls for culturally competent information on autism.

There has been lots of discussion in the autism community about this act, especially since it uses the word combating. It makes it sound like our children are so horrible with it and we must defeat it. I too am offended by the word "combating" in the Act, but I am not offended about what the Act may mean down the road. I did spend time this summer and fall contacting my senators to encourage support of it. It might help families "combat" insurance companies!

I post this today, after two long, frustrating days with our insurance. Rrrrggggggggg! We have been dealing with coverage for Sam since the get go. I am beyond frustrated with them and will vent here (sorry)!!!!! I can't really go into much detail, other than say they will cover some things and then they don't. They (our insurance) say they view autism as not having proof or evidence of therapies that will help as there is no cure. They also say that ABA therapy has some research in support of but not enough science based proof of helping. We feel stuck sometimes with few options for Sam, and stuck with lots of bills (but all worth it for him)

...but my point is this. In all of the conversations I have had with insurance over the last couple years, it is very evident that they don't want to cover anything that is not evidence based. Maybe with the new Act, there will be dollars to back up such research.

My experience in the state of Minnesota has been that families in the middle get stuck when it comes to services for Autism. If you are very wealthy, you can afford the extra services from PCA's to ABA, or if you have a lower income and can qualify for Medical assistance, they cover everything, but if you are middle income, you can't even afford TEFRA (at least not here).

I just want families with children with Autism to have a better means of accessing services. My hope and prayer is that this Act will increase awareness and research and services. And no, I don't want to combat Autism, I want to combat the insurance companies. So, forgive the name of the Act, but hope for better resources for our children from this.

A Twist of Faith

1 Timothy 6:12 says,
"Fight the good fight for the true faith." (NIV)

Perhaps we can look at this Act not as "combating Autism", but fighting the good fight that will serve the highest good for all families with Autism.

He knows... (Journal #44)

Sam knows. He knows he has Autism. He doesn't understand it, but he knows.

We, as a family, have always used the word, Autism, around him. A lot of times, we may have been talking to his brother about something in reference to it, not always thinking that Sam would pick up on it. There has also been a few times that brother has said, "I know, it's the autism", when he is frustrated with his little brother and trying to justify his actions.

Zach went through a whole year of Sibshops. Sibshops are classes for siblings of someone with autism offered through ARC. It was a wonderful experience for Zach, as he learned there are other kids out there who have special brothers like his. The classes teach the siblings about autism, respecting different abilities, about how to express themselves when they may be frustrated with their sibling, and how to be an advocate for their sibling. It is through these classes that Zach became more versed on autism and is never afraid to tell friends or others about it and his brother.

Because of our free speech with it (autism) around the home, and Zach's understanding of autism, we believe Sam is picking up on it. I really had no idea how much...until last night, when Brent came out of his room after reading time...

...Brent has been reading Charlotte's Web to Sam in anticipation of seeing it when it opens this month. Reading to Sam has become a blessing. It hasn't been until this past year that we could get him to sit long enough to read anything. He would get focussed on an object on a page, or a line, and could never get back to the meaning or understanding of the story, he would start flapping and jumping up and down on his bed. Of course these reading attempts were made with developmentally appropriate books, which up until recently had still been board books. But...his brother has been trying to read with him more and Sam has become interested in all of this reading Zach does alone as well. After much trial over the last 3 years, he will sit and listen to a story. Not only a story, but now Brent is reading a chapter book! Brent had gotten to the part where Charlotte was telling Wilbur how special he is. Special because he is the little one in the batch, or kindly put, the runt.

When Brent got to this part of the book, Sam started to say to Brent:
"ooooooohhhhhhh, so Wilber is spesil lite (special like) me?"
"Yes, Wilbur is special and Sam is special" Brent said.
Sam replied, "Does Wilbur have awstisism (autism) too?"
The conversation continued on a little more.

Brent came out of his room and quietly closed the door after Sam had fallen asleep listening to the story. I was completely surprised when Brent told me. I had no idea that he even knew the word. Brent told me that Sam has said that he has autism on a couple other occasions to him. And Brent had even gone so far as to probe Sam to find out that he knew it had to do with his brain. I was floored.

Why wouldn't Sam know that he has autism...as I think back? How many times have I told a complete stranger, "sorry, he has autism"? All those times waiting in a checkout line when he can't stand in line, and he is screaming, and he doesn't even know why sometimes. His tall skinny, almost 5 year old body looks too big for these types of tantrums to others.

Or the times that he is hitting me in public because I can't understand what he is trying to say. I very well know he is not hitting me because he is mad at me, he is so frustrated. Hence, the scene looks worse than it really is as I am calming him, and again, I say to a stranger staring, "please excuse him, he has autism and is trying to tell me something."

Of course Sam has heard us say it, duh! Even though I thought he had no idea...he knows.

A Twist of Faith
God surprises us like Sam did me. I had no idea that Sam knew the word autism, or that we even associated it with him. Sometimes we think no one else knows anything about us or really understands, but God always knows our needs and all about us. Sometimes we just need to talk to him to find out. It's really simple with Him, because...He knows...

"And when you are praying, do not use meaningless repetition as the Gentiles do, for they suppose that they will be heard for their many words. So do not be like them; for your Father knows what you need before you ask Him. "
~Matthew 6:7-8

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

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

~ Memphis (Mumble's dad) in Happy Feet

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

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

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

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

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

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

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

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

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



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



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



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



A Twist of Faith

The three A's:

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



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



Awareness and Acceptance of Autism, a must.



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

Next week in Newsweek (Journal #42)

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

I wish everyone a Happy Thanksgiving!

In a Matter of Seconds (Journal #41)

It happened so quickly, and always does. In a matter of seconds, Sam can change the layout of any room. I don't say it out of frustration (although at times it is), I say it out of amazement. Tonight we returned from delivering Zach's wreaths to people who ordered them through his Cub Scouts, to find a message from grandma on the machine.



Sam had started playing with some of Zach's flash cards, just one pack of some math problems at the time. He was having fun looking at the numbers and was sitting at my feet when I called Brent's mom back. Sam was calm, not making noises, playing at my feet.



One of Sam's stim's (as our family calls them) or stimming activities (check out my blog friend Kristina's "friendly" wording and writing about it) is constant motion/movement/lining up of objects. Sam has to keep moving and organizing at all times. The only time he really sits still is when he is really hungry, or watching his latest TV fav which is Mickey Mouse Clubhouse right now. It is a matter of seconds how quickly he can take over a room with his organizing or lining up.



Hence, the few seconds at my feet with a deck of cards, turned our living room into a quilted array of flashcards. I no longer had walked into the kitchen while on the phone, to only get some water, to find this when I returned. Cards lined and organized all over the floor. He was arranging everything meticulously. Chicago, our dog, made the mistake of journeying through the maze and accidently shuffled some cards. Sam had several shrieks and yells to share with her over that little episode. While everything looked just thrown about. He was very carefully placing each card in a specific place, and knew when one was turned slightly wrong in his eyes.



In a matter of seconds things can change. Can change for the better. The past couple/three years would have found us dealing with anguish and screams at the thought of cleaning them up. He would not let us touch his arrangements for days on end, nor would he. They were his "shrines in a glass box" as we called them. But we could never think of cleaning them up. But tonight was different. After allowing Sam to walk around the outside of them several times, to lay on the floor to get a floor view of them, and after he sat beside them for 20 minutes just looking at them. I gently told him that we would clean them up together before bed. He didn't scream yell, or anything. I went into the office, came back out seconds (really a couple minutes) later, and he had sorted all 5 decks accordingly into 5 piles and wanted help to put them back in the boxes!!!! All in a matter of seconds. That's my boy:)



A Twist of Faith...

In a matter of seconds life can change. In a matter of seconds this past week, we had a high school classmate, and a friends brother-in-law die in seperate car accidents. Both young, both had children, one had a baby on the way. Life is a gift from God. What we do with it and how we live it can be taken in seconds. It frustrates me greatly how it always takes times like this to remind people about not waisting the time God gave us. How important our time is here on earth. Why can't people just be focussed all the time on what God wants us to do, and not wait for these dreaded moments to be reminded. We get caught up in our own wants, needs, sadness, desires, dissapointments so much that we forget that this life is not about us. It is about what we do for others, how we help others, how we reach out to others before it's too late, that makes all the difference in this life. Reaching out to help and do for others can change a persons life...in a matter of seconds.



It is God himself who has made us what we are and given us new lives from Christ Jesus; and long ages ago he planned that we should spend these lives in helping others. ~ Ephesians 2:10

Oh Dear! (Journal #40)

I have decided, as a way to reframe some of the challenges that go along with raising a child with Autism, to put our experiences into a frame of faith. That with each "praise or concern" that occur on this journey, that we take a look at it as it relates to the cross in our family life.

So, without further ado, I share with you my first attempt...

...we were driving to Sam's speech therapy session, when the funniest part of my day occured. I was driving in the parking lot of the medical center where he goes. Sam was buckled in the backseat of course. I stopped for a moment to wait for a lady to cross the street to the building. She stood for a moment, and then I gestured to her with my hand for her to cross. But as with any typical "Laura moment", I can never just do something in silence, I also have to speak. So, with all of our windows rolled up tight, I said to the lady as I motioned, "Go ahead dear". Expecting that she would hear me, NOT! But big ears in the backseat did.

Sam immediately yelled at me, "Mom! Dat's not nice!"

"Sam, what's not nice?"

"You tan't tall her dat!" he said with major attitude.

"Sam, call her what?"

"Not deer!" He yelled.

"Who's not dear?" I said.

"You talled her deer."

I finally went, "duh" to myself, realizing that he thought I called the girl a deer, when I said, go ahead dear. I started to smirk. Wanting to push him a little to see if that was for sure.

"Yes Sam, I said to her...go ahead dear, so she would cross the street" intentionally not focussing on the dear portion to see what would come next.

"Mom...you talled her a name, no names, mean mom. See not a deer!" I am so chuckling to myself! I love him so much. I am immediately taken back to one of the first times Brent and I met with our pediatrician, Dr. Kuperman, shortly after Sam was diagnosed. He reminded us that we need to speak without sarcasm, and to say exactly what we mean, without extra words and such. That children with autism interpret things very literally. This was one of those times that I love the "literallnes" (if such a word) of it all. It is so darn cute. Okay, back to my boy....

so I say, "Sam, some people say dear, meaning they like them, like a friend. So it was like I said go ahead friend, cross the street. Or sometimes people say oh dear, like oh my goodness. I didn't say it to be mean."

I looked at his face in the rearview mirror. He was super serious. His eyebrows straight across as he stared out the window. There was a lengthy period of silence. Then he said with one final request. "Don't tall her deer no more, not nice. Miss Telly said no names." Miss Kelly, his special education teacher. Sam is in a LEAP program that is highly focussed in social skills training. Every week they focus on new skills and practice them while playing. Being a kind friend is a focus this month, and according to Sam, I need some practice! Oh Dear!

A Twist of Faith...
In the way Sam views things so simply and literally, makes me almost jealous sometimes. We as humans, can add such complexity to life by analyzing, rethinking, trying to interpret, instead of just seeing things and enjoying them for the way they are. To fill blessed for the simple things in life, for simple understanding, for simple but serious faith. Thank you God for the way you lead Sam in teaching our family. Life is too short to make it complicated.
Take your everyday, ordinary life- your sleeping, eating, going to work, and walking around life- and place it before God as an offering. ~Romans 12:1

I don't care what the world thinks...because I have a proposal I'll never forget! (Journal #39)

I don't care what the world thinks...especially on an outing like today. I had a lot of errands to do when Sam got off the bus today. So, I thought we would try going out to lunch together first to set the pace. We went to Culver's (he loves their hot dogs). He was awesome! After ordering he asked me, "I pit?" (pick the table we would sit at). I told him yes, and his eyes were all excited. He walked a little dance around the dining area (which was getting very full as we were there at noon). He put his little finger his cheek, as if to say "hmmmmmm" like his brother does, and then he found a table. I then asked him if he wanted his own ketchup, because he likes to dip his fries in the little cups they provide. He politely said, "no tants". So, I went about my business putting napkins and such on the table, then awhile later, out of the blue he said, "I tare withhhhh (we're working on "th" in speech therapy) mom" (he wanted to share my ketchup). I was more than happy to share.

Next stop, the Scout Shop, to get badges for our Cub Scout den I lead (yes, I am a den mom, never would have thunk it, but is a way of supporting Sam's big brother). Something happened on the freeway on our way there. I do not know what, but watching Sam's face in the mirror while I was driving, was telling me something, I just didn't know what. Every time I would look at him in the mirror, he would scream, "ahhhhhhhhh". His eyebrows were very tight. I asked him to use his words to tell me what was wrong, or what he needs. Another "ahhhhhh"! I was afraid to take him into the district scout office, as it is always a very rigid, "this is the way you do it type of place". I HAD to get the badges though, because our pack meeting was tonight. It is a big night for each den, as they get their adavancements and badges once a month in front of almost 80 scouts and parents. It is a big deal. .....................I gently unbuckled Sam when we got there, like not wanting to tip a basket of eggs. There was a little "grrrrrrr" under his breath. He just sat in his seat, not getting out. I told him to come with mom. Finally it looked like I might get some words! "Too bite. Turn it off" (he was talking about the sun). I showed him how to cover his eyes like we always do to walk in. His face straightened back to a firm look and in we went. He did not say one word the whole time there. It took awhile, as I had to fill out papers on the boys getting the badges, and then get them, and so on. The whole time he just laid flat on the floor by me at the counter. People kept staring at me, like to get him up. But...he wasn't in anybody's way, he was making no sounds, just staring at the ceiling. But...two more people behind the counter had to say, "wow, he must be having a day, wish I could just lay down whenever I wanted" (and then rolled their eyes). Yah, well you know what scout master behind the counter...he happens to love lying on the floor, he does it a lot, he likes the firmness and pressure of the floor, it makes him feel stable, oh yah, and did I tell you he has autism, and that you should just be thankful he isn't running all over this store touching everything, knocking it on the floor and screaming at your customers. (Okay...I didn't say that, but I wanted to.) Outa there! I DON'T CARE WHAT THE WORLD THINKS of our beautiful boy.

And yes, oh my goodness, I had to get one more stop in before we went to speech therapy. Brent is leaving out of town again, and needed his new pants he got a week ago that were getting altered, picked up from Macy's at our mall. Every time we walk into that store (which used to be Marshall Fields, which used to be Dayton's all just in the last 5 year), it is sensory overload for Sam. I was trying to prepare him and myself for it all the way there. But NO..................as soon as we walk in the doors, it hits..........what?..............I don't really know, other than I think it is a combination of the lighting and the mens fragerance counter to name a couple of things. Sam had an instant "drop to the floor, screaming" explosion. I had to get Brent's pants and go. Eyes were glaring at me all the way down each isle, like they were asking me what I was doing keeping him here. But...I had to get Brents pants before he leaves....and this mall is not a quick drive from our house, to try and return, before he goes. I DON'T CARE WHAT THE WORLD THINKS of our beautiful boy.

We get in the car, he starts to calm himself, as he wouldn't let me near him. We try to talk to grandma, and then it is off to speech. While he participated well during his session today, he was straight out the door when we were done, yelling in the reception area as I talked to our therapist, "doooooo, dooooooooo" (go, go).

As the afternoon progressed, and Sam had found other spots around the home to lay on the hard floor in a ball (a way he comforts himself), he started to come back out of his shell. I let him "chill" on the rug he chose by the garage door, and went up to the office to work on the computer. It was there in that chair, that I received the best proposal of my life. Sam had found some flowers in a vase. He brought them up to where I was working, and with the biggest smile, while he stood in front of me holding a few flowers, he said, "marry?". Ohhhhhhhh, THE BEST PROPOSAL IN THE WORLD!!!!! I DO, SAM!!!! I promise to be your loving mom the rest of your life!!!!!!

Wondering why...(Journal #38)

Wondering why...I haven't been able to put to words what I have been pondering about Sam the last few weeks? Could it be because we have seen dramatic highs and challenges ( I don't want to say lows, okay, I just did didn't I?)? The highs have been awesome. His big brother had a sleep over, consisting of 8 very active 9 year olds on his brother's birthday. I was completely stressed about Sam being overstimulated by having all of the excitement. Brent was on "Sam duty" throughout the event. On the agenda for the evening was bowling at the awesome Brunswick Zone. Our last experience trying to do a family bowling night ended up with Sam screaming, running around and hiding under chairs, of which saw the two of us driving around in the van for the next hour while Zach and Brent enjoyed the rest of their game. Needless to say, to our surprise, Sam was the most manageable boy there! He was awesome, even with all the noise, even with the 48 lanes, lazer tag center, arcade, diner, and sports screens! It truly was a tearful, joyful time for Brent and I to witness. Perhaps, the greatest though, was the way Zach and his friends handled Sam. Even though we heard some of the boys saying things like "I don't understand anything Zach's brother says" or "Why does he make sounds like that?", the culminating moment was at the alley. The boys shared two lanes. Five on one lane and four on the other. Sam was a part of one of those. Every time it was Sam's turn, all the boys in his lane would get his bowling ramp, help line it up for him, help carry his ball, then they would all stand beside him to encourage him. They would cheer him and high five him no matter what he did! Sam was loving life, smiles were huge, the high was unreal!


Wondering why...Sam's back to lining all of his toys up. Felt like we had made progress seeing more interaction and play with them instead of his "arranging and lining up" and then walking away allowing no one to come near or touch. Or had we made progress, or was it just that we are hardly ever inside from June-Sept before we have to be in winter? I started really thinking about his play. Yes, we haven't really been playing inside for a long time. We've been out back in the sandbox, where Sam will play for hours if left to do so. So I got a little sad this week, when he kept creating the same scenario with his barn stuff. If I cleaned it up at night, he would wake up screaming that "you brote, you brote it!" He would then proceed to line it up exactly as it was the entire day before. No one can touch it all day! What I thought was progress wasn't. Or do we really need progress in this area? I agree that he has got to allow us to interact with him when I am tyring to lay on the floor and play, I agree that he has to learn to let people play with the toys the way we want to, not on his terms, but isn't it still okay for him to do his arranging/lining up for whatever security reason he needs? Lining up organizes his world. We have taken all toys out of his bedroom this last year, because he would just line everything along the walls of his room all night if we didn't. Even after they are lined up, he still keeps adjusting them, making the objects face directly the same way or whatever. All that remains in his room are a couple of his favorite snuggly animals, his tub of "sensory" kidney beans ($100 worth), and his weighted blanket. So, this week I caved. I allowed him to bring in a few toys at bedtime to line up along the wall. It seemed to comfort him. I put the timer on telling him how long he had, and you know what he said back to me? "I dus need to line dem mommy, den done." (I just need to line them up mommy, then I am done)! I wonder if it is okay, but I don't need to wonder if it makes him feel better, it does!

Just a couple of things I have been wondering about....of which there was so much even more I am still wondering about, and will share in later posts.

Just always thinking, I am...and wondering why?

Sometimes we dance (Journal #37)

Sam's been kind of quiet lately. Only speaking when he really needs to. When he goes through stages like this, I am intrigued by his face and the way it can speak with expression. He will look at things with great thought, as if seeking clarification from whatever he is looking at. I particularly enjoy the way he interacts with his environment during his "silent times". He appears to examine objects more. He will feel them, smell them, and of course lick them sometimes, but I love when he lays down to get eye level with whatever he is looking at. He will take his hands and raise them to the height of the object. He will lift it, hold it, caress it at times. Sometimes it is like he is dancing.

When Sam got home from school today, I am sure he was ready for his usual routine. In door, shoes off, coat off, book bag down, run up steps, eat. I was not ready for that today. Today I needed to enjoy him in the now. I needed time with him away from our current surroundings. A place where there was not his familiar comfy's to distract him, but a place where we would be distracted by comfort. That place today was Medicine Lake. I wanted a place we could relax by the water or play in the sand, or crunch the beautiful fall leaves. It was a perfect fall day.

I love Medicine Lake. It is a bit of a drive from our home (10 minutes, but we live in Minnesota, so that is far considering there are over 10,000 lakes and we even live across the street from one). This particular lake has every element I love. It has parks, homes, wetlands, nature, Minneapolis skyline, biking, beaches, and lots of nature. This lake became my friend when we first moved to Minneapolis 6 years ago. I drove by it everyday to my teaching job. Some days I would drive by missing our first home in Des Moines, but somehow this lake would bring me peace. When my sister died 3 years ago, I used to go there to walk and reflect. It just always brings me peace. I needed peace and quiet with Sam today. I knew the lake bike trails and parks would not be busy, as it was a school and work day, and at the time we were there, 60,000 Twins fans were at the Metrodome watching them lose in the 2nd playoff game or were at local establishments watching the game. Few would be walking around the lake. It was a peaceful, beautiful day to be at Medicine Lake.

Before we left for the lake, I had to make sure it would be a smooth "out of routine" transition. I knew that I only had to tell Sam that we were going to "his" lake to watch the ducks and eat a picinic, and he would be excited. Sam also loves this lake. Whenever we drive by this same spot, Sam always says "tretty mom, tretty" (pretty mom, pretty). He knows exactly the spot, exactly the bench that he likes. We get to know this lake whenever we are doing his "Listening Program", as we do it while going for rides in the van in the evening.

I looked at him and simply said, "Lunch at your lake?"

He screamed, flapped his hands and started spinning with joy. He was putty in my hands. While I told him to go potty so we could go, I quickly checked his bag to see his note from his teacher today. She wrote that Sam was very quiet, seemed lost, and needed lots of directions and reminders of what to do today. This was no surprise. He has been needing reminders about who people and family members were lately, and how to do everyday things he has mastered before. He has been forgetting who people are, what their names are, and has been talking through us to them. He is particularly close to our pastor, but has been telling me what to say to her and has forgotten that he ALWAYS calls her "pattor eelynn" (Pastor EvaLyn). This past weekend he couldn't remember the names of his little cousins who are a couple years younger than him, so he called them "ditto ones" (little ones) all weekend.

He returned up the steps ready to go on our drive to the lake. He was still flapping his hands, flying around and around. It was almost like he was dancing.

Into the van. Quiet ride. I kept watching him in the mirror. A soft expression was on his face. He too was beginning to feel the peace the closer we got. I could tell.

When we got to the park on the east side, we found a spot near a playground to eat our lunch. We ate quietly. I would try to talk about school, but every time I would ask him who he played with, what he did, etc...he replied each time with "not tell today". When he says this, he really means it. I have tried to push in the past, but it can easily escalate to screaming. But....of course I had to try one more time. No screaming in response, but this time a combination of sentences...."I fordot, not tell today". He was calm and peaceful when he said it, but clearly expressed with his face to me, that he wanted to sit and watch the water, eat his lunch, and for there to be silence.

Silence it was. But it was an incredibly peaceful silence. A couple times I would try to talk...do some "WH questions" (which always gets him talking)...but to no avail, would anything work today. Silence. I believe God wanted me to shut up and enjoy the silence with Sam today. Why can't I ever listen?

The rest of our time at the lake was in quiet. Sam would get up to go explore the beach area. I followed. He watched me out of the corner of his eye. Occassionally testing how far away he could get from me and how close to the water he could go. I just followed along, walking like him sometimes, walking with sometimes. Sometimes...it was like a dance.

One of us would move towards the bike trails along the lake, the other would follow. Sometimes we would stop to pick up a feather, a leaf, a rock. Still no words. Sometimes we would stop and just stare at the water. Just stare at the geese, ducks, and birds. We both knew when to move on, when to stop, and when to honor our silence.

This was a beautiful day. A day of silence. A day of peace. It wasn't like a dance....we were dancing. We didn't touch, we weren't holding each other, we weren't stepping on each others toes, but we were dancing. Dancing all through the lunch hour into the afternoon. I can't wait to dance again with My Sam I Am.

From "Tomborns" to Sit and Spin (Journal#36)

Sometimes I wish I could go back to our summer vacation. It was such a dream this year. Mostly, as I said before, it was uncharted territory for our master mind Sam who remembers everywhere we go, and is the navigator supreme. He did not know anywhere we would go on our vacation until we experienced it. So, as the last official day of summer is here (and we woke up to 30 degree temptures here in Minneapolis), I relfect, I am sad, and I can't wait until next summer.

Above is an attempt at my first "sample" digital scrapbook page. I am going to digitally scrapbook our Yellowstone experience tonight with my "scrapbook girls". This is exciting for me. I am an "in the closet computer geek". I have been scrapbooking for 10 years, and am so excited about taking it to the next level. I hope to share more pages as I practice more.

Even though I am sad about summer, I also LOVE the fall. The crisp morning air (especially in Minnesota), the beautiful lakes and leaves, the apple orchards, the pumpkin patch, and our now annual trip to the north shore of Lake Superior (I will scrap those pages and share when it happens :).

As even more sick than this may sound. I also love mowing in the fall. I prefer to mow in our family by choice. I love our yard and being outside (as does Sam). I also mow by choice because Brent works hard, travels, and when he is home, I want him to be with family, not doing yard work.

This all leads me to the newest love of my life. It is a new love, as I murdered its former. I killed our Lawn Boy. Brent and I were so proud of our purchase almost 13 years ago. It was expensive for us, a new brand named lawn mower. But we researched and purchased Consumer Reports, and made the Lawn Boy decision. We knew it would last forever. That is.......until I rendered its brutal ending last week. Seems ding dong me, forgot to put oil in the gas the last time I filled our 5 gallon gas can up. Yup....I also polluted the enviroment in our neighborhood that fateful day, as loud cranking noises emerged and clouds of smoke pummeled into the air. Several neighbors came by to pay their last respects, and confirmed with me that after running that much plain gas through my baby, that unless I knew how to rebuild the engine, she was through. So, I have placed her in an add in the Twin Cities Free Market for parts. Sniff, sniff.....

But I have a new love. I have a brand new self propelled Lawn Boy. It rocks. I could seriously mow the lawn every day. I felt Sam deserved a new lawn mower too, as his was his brother's 8 year old one. So we went to Toys R Us and bought him a new one with bubbles. As I mowed yesterday, with Sam following me behind, as he always does with his lawn mower, I was reflecting on my mowing experiences in comparison to Sam.

The "tomborn"- Every day when we go outside to play, Sam will say at least once, "mom tomborn?". He has called the lawn mower the "tomborn" for the last year and a half (we believe it may be a combination of "combine the corn"). Ever since we could start understanding his speech better. Seems he is in love with his grandpa's tractors, but especially his combine. Before I ever could figure out what Sam was saying every time I mowed, I kept explaining to him, "No Sam, this is a lawn mower". It wasn't until one day with his extreme frustration of me not understanding, that he used his whole body in motion to show me why it was a "tomborn" (combine). He took his hands and pointed to the lawn mower, then used his body in a swooshing manner and hands, by pushing them along side the side bagger, then up. He took his fingers and wiggled them into the grass container, as if sprinkling something into it. He then screamed to me "TOMBORN"!!!! Duh, of course it was a combine. It cut the grass/corn, sent it up the container/shoot and into the bin/wagon.

That is the way Sam always thinks. He is always trying to figure out the way things go and work. He understands very quickly those mechanical things.

Today he spent much of the afternoon on his Sit and Spin from grandma and grandpa. I couldn't believe he wasn't getting dizzy. He would take off his clothes even and spin, then put them on. But as I watched him, his purpose I believe was trying to see how fast he would go with different weights on it etc... He had super concentration in his eyes. It was finally at dinner time that he came running up the stairs yelling "dot it, dot it, loot" (got it, got it, look). He turned the Sit and Spin upside down to show me the middle part underneath that stays put while the outside goes around. He didn't use any words to explain it, but just like the "tombine", his actions and face spoke and explained more than a thousand words.

I love the way he thinks, I love his dramatic movements, I love how he understands the world...from "Tomborns" to Sit and Spin.

The Four S's (School, Schedules, Scissors, and Screams) (Journal#35)

And so the week started with S's and continues...

S #1- SCHOOL!!!!!!!!! Sam's first day of school was Monday. We have been preparing and preparing. Some days he likes, and others, well... not so much. The first big change went much better than expected, and that was the switch from the yellow school bus last year, to a white van this year. I was getting nervous when it didn't arrive at the scheduled time, but it was the first day of runs for them with the special education children. It came 10 minutes late, which isn't that bad, but they ask you to be ready and waiting 10 minutes early, so really we had been waiting 20 minutes with a very anxious Sam. He boarded great, and of course "scrapbooker" mom did not get any pics yet (left camera on vacation) and my camera phone was dead (typical luck for me). It was super funny when he got home, because he did the same things as usual from all last year. It wasn't even like there was a summer break.

Shoes off...coat off...backpack thrown on bench...run upstairs as fast as he can to see what is on the table for lunch (no words, just down to business)!!

S #2- Schedules!!! So I am really going to try and be good and stick to a schedule and our home program better than last year. He really does well when we use his PECS schedule.

Sam excited about the schedule? Not so much.

S #3- Scissors!!! So...me sticking with the schedule, we work in some of our home OT stuff. The real scoop is that OT is ALL home programming now. Our insurance doesn't cover everything for that right now, so we are done until it allows us to go back for a re-evaluation in 6 months. So we do our little cutting activity, and it just seems to be going backwards. He used to required me to draw a line from the edge of the paper to the object needing cut, but he doesn't anymore, so that is good....but for almost 5, and kindergarten next year, and me TRYING not to compare him to his NT brother, it still makes me wish I could help him get up to speed a little more. But it is all in his time...and that is okay. He worked sooooooo hard cutting and then gluing them on with his little glue swab. A cool thing he finally did today for the first time was to at least follow the dots I made on paper of S for Sam. He has been working on this for over a year. I wonder if I should push and add the A and M!!!

S #4- Screams!!! The little dinosaur scream has been working overtime. We are by no means stressed by his melt downs. We know he is going through a bit 0f a transition time. This morning, Brent was home to help get the boys ready for school. As much as dad tried to help get him dressed, Sam refused.

Whatever piece of clothing that Brent would put on....

Sam would rip off......

He would then scream, climb up on his bed, and literally climb his wall in the corner and curl up(there is a ledge).

After clothes being ripped off, doors being kicked, dad had done his best. And...we could not let him go to school dressed in his birthday suit...so mom caved.

I shared a laugh with my online friend THISMOM.com today about our ASD kids and their rituals and routines.

And...this is one of Sam's rituals.

ONLY mom dresses me!!!!!!!

So, we are living the 4 S's, and actually loving them all. Keep your fingers crossed that I can keep a schedule and get our life back on one as well!!!!

A Breath of Fresh Air (Journal#34)

After a month and a half of waiting, we finally were able to get in and see a behavioral therapist today. One that our insurance covers with a copay (finally)!!! She has her office at the Autism Society of Minnesota headquarters. By the way, check out this adorable picture of Sam on the advocacy page of our state's website, click here! Okay, enough bragging, although I am sad, because he is already well over a year older since that picture was taken. They grow up way too fast!!

Brent actually flew in early this m0rning (he was out of state for work, we do live together:) to make the meeting. I was so glad he could be there. Given his crazy travel and work schedule, he has not missed a meeting. We asked a lot of questions about our concerns with his need for whole body stim, safety issues, communication issues, his agressive behavior when having a melt down that is leading to more dangerous situations for him and others, just lots of things.

She gave us sooooooooooo many things to work on, and Brent and I are excited to begin. It is going to involve a lot of work, redoing some of our picture schedules, creating more "therapy spots" in the home, lots of time, but mostly lots of love, which we have.

One of the things she shared with us, which I will share with my autism friends is a concept that was new to us when using Social Stories. Instead of verbalizing the written story(and doing pictures), she suggested video taping Sam doing the things we are needing to work on. For example, taping him walking safely across the street, or taping him coming to talk to us before "escaping", I mean him wanting to go out to play :). She told us she has been involved with recent studies looking more at the thing that frustrates us most about Sam. And that is he can tell us exactly what he needs to do in situations after only being told once, but he can't apply it for himself. This has been most frustrating for us, but she explained some of the research showing the brain connections with autistic children,and that they can understand and even apply to other people these procedures, but the part of the brain that allows them to see themselves doing the task doesn't always connect, even with a picture of themselves. For them to physically see themselves moving through the actions on video is finding some success with other familes who have tried it. So, we are excited about taking our social stories to a new level of "animation"!!!

She also suggested we follow through with applying for county assistance for developmental disabilities, as she thought we could use more help in the home, and could get him more services. I have put off filling out the the 200 page application (it just seems that long) because we couldn't afford the TEFRA copay, and because the "waiver" waiting list has been closed for two years with no opening date in sight. So, I am now motivated to do that again, and at least get a case worker assigned to Sam as she suggested. I am sharpening pencils as we speak (oh wait, it says use blue ink only).

The last thing she encouraged, was for us to finally look at RDI. I have been poo pooing it this past year. Trying to just read up on it, but again, thought it looked expensive, considering our stupid insurance. But, I know some of you out there have had success with it, and others also by just going to conferences and self educating, instead of paying providers and consultants. I would love feedback on how RDI has helped any of you, and suggestions on going full boar, or just taking peices that work, or whatever suggestions you have. THANKS!!!

It is nice to talk with someone, and the new behavioral therapist gave us that little motivation to get back at it, and she also gave us a breath of fresh air.

Careless? (Journal #33)

I am curious that if I wonder less, that means I care less?

What I really mean is this...I am learning to not "wonder or worry about" what others think.

I used to wonder...

...what the neighbors thought, when they can hear screaming from our house and yard a lot. Sam screams a lot still, even though he is more verbal. His tantrums are getting more frequent and louder the older he is getting it seems. Although really, we have decided it is just that he can do more with his body because he is bigger. When he is mad, he is so quick to slam doors, throw whatever is in sight and scream. We don't leave windows open a lot.

I used to wonder...

...what people thought when they see us chasing this little boy (who now looks like he should know better). He runs away like a 2 year old constantly. The other night, we were outside working in the yard until well after dark and Sam escaped us. It was scary to chase him in the dark and the thought of going through neighbors yards, not knowing what you may encounter. I felt like doing one of his dinosaur screams myself.

I used to wonder...

...if people thought I was a bad parent for having this "out of control" child in public (as it appears to others). Monday was the mother of all mother days. We had so many back to school errands to do. Unfortuntately the last event was to have brother try on 5 pairs of pants at the alterations store. Patience was not on Sam's agenda (nor should have been for anyone who encountered our long day, bad planning on Mom's part). I was trying to help Zach try on pants, then have him stand on the podium for the lady to mark, while chasing Sam who was cowering under every chair he could find, or running into the dressing rooms and slamming the doors. The nice lady just smiled and kept saying, "very busy boy, wow...very busy boy, wow." I tried to explain to her he had Autism, but she just smiled and said "that's nice". She speaks minimal English, but has been a great seamstress for us this past year. At least she was still smiling when we left. I hope that means we can still come back to pick up Zach's pants next week. I don't think she kicked us out.

I used to "wonder and worry" a lot about what others thought. I grew up in a family that expected us to be perfect little puppets in public. We were always cautioned to worry about what others thought of us. It was my parents best way of teaching us to be respectful. It can also cause severe paranoia! I have realized that I have expected way too much from Sam's older brother Zach for way too long. He is just going to be 9, but we have been making him be accountable for his behavior and interactions with his brother in ways most children wouldn't understand for the last 4 years almost.

I don't wonder anymore. We will continue to hold our son's hand in almost every place we go for his safety and our peace of mind, we will continue to just hold him and love him and not discipline him while he is having a melt down, we will continue to allow Zach to just be a kid and not expect so much, we will continue to ignore behavior from Sam that could escalate if we didn't and not worry about what others think. We will continue to shop for our needs and do errands, regardless of what people think about Sam's constant jabbering, loud voice or tantrums.

It has been hard learning to care less about what others think. But I have to for my sanity and the sake of my boys who just want to be my beautiful children. I just pray that by my caring less about what others think, doesn't ever allow me to be careless.

A new planet- Buzz Lightyear (Journal#32)

Just as I start to brag about Sam sleeping so much better to family and friends, it is then that my blessing is toppled. Last night was a night! Perhaps Sam was star gazing and already preparing for the International Astonomical Union's morning announcement denouncing Pluto. He does sense things before they happen I believe!! :) So, last night I decide to do a Walmart run since Brent was leaving the next day for a business trip to Kansas City (and I am not up to taking Sam shopping, considering the past week). I got home around 1:30am, and Brent and I talk to the wee hours.

Just as our eyes grow heavy, we hear a cry from Sam's room. He wet the bed. We hurry down, comfort him, clean him up. At that point, we decided to part the waters to get to bed sooner. Brent would snuggle in with Zach in his bed and I would take Sam to ours. It was another one of those nights. Sam did not go back to sleep until around 5:30, of which the time we needed to get Brent out of bed (who really hadn't slept). So both of us got no sleep. Unfortunately for Brent, he had to beat rush hour downtown to an 8am meeting, then fly off to Kansas City for the next couple days. I hope he gets zzzzzzz on the plane.

So the morning was sluggish. The boys and I were snuggling in Zach's bed. I was half conscious, but enjoying them looking at a toy catalogue together. It was a peaceful calm time for them and Zach was being such a good big brother. Sam would say to Zach, "what dat?" and Zach would gently explain to Sam what the toy was and what it did. In the middle of the boys sharing together, the phone rang.

Brent had called and demanded to speak to Zach right away. I could hear the conversation, and Brent was excited and telling Zach about the morning news and the reduction of supposed 10 planets now down to 8. Zach hung up the phone super excited, retelling me and Sam at 100 miles per hour.

Sam kept saying back to Zach, "what Zat?, what Zat?".

Zach would explain again in his scientific voice.

Sam replied, "no Zat, oanee Buzz Yightyear panet!"

Zach, "Sam, Buzz Lightyear is not a planet, he is a Disney Character."

Sam, "no Zat, Buzz Yightyear panet! Zat, Buzz Panet!"

Zach, "Sam, Buzz Lightyear is NOT a planet, he goes to planets"

Sam "no Zat, Buzz Panet!"

Zach, "Sam, Buzz Lightyear is that character all over your bedroom, he is NOT a planet!"

Sam "Zat, Buzz Panet!" "Ahhhhhhh" "Ahhhhhhh" "Ahhhhhhhh"

So much for the peaceful morning watching the two share in conversation about toys. The teridactle scream began and lasted a half hour. Sam used few words the rest of the morning. Actually the rest of the day. I do think some of it may have had to do with the barometric pressure and the severe storms and tornados that ripped through our portion of the state. Who knows?

I feel for both sides. I know how frustrating it is explaining things to Sam, and I can imagine how frustrating it is for Sam to not get us to understand. But, I also am learning to not always mediate. Zach has to learn patience and learn to try to understand what Sam is saying without me interpreting, and Sam has to learn to communicate without my translations as well. While it can be frustrating, I am just fine learning about a new planet named Buzz Lightyear!

Home, Safe and Sound...(Journal #31)

After a month of travels and adventure, we are finally home. I had prolonged posting since we have been adjusting to being home and trying to get a schedule back in place. Last week was our first full week home in awhile, and it was an extremely difficult week for Sam transitioning. I had also postponed writing, as I was going to put some pics of our vacation up, but I don't have my camera. I left it at a friends of ours on accident on our way home. So as soon as I get it there will be some cute pics of the boys and Yellowstone.

Brent and I have seen some of the most challenging behaviors from Sam in a long time last week. Lots of running away and escaping, lots of self injury when mad, and lots of aggressive behavior towards our whole family and objects. Brother has seen lots of kicking, dad head butting and hair pulling and mom lots of biting. We know that he has been on sensory overload adjusting to home and coming off of travels, we know he hasn't had a "real" schedule in over a month. We are not surprised and we understand where it all has been coming from.

We were worried about how traveling on vacation would go for Sam. We had several long driving days planned. Our agenda included:
~Traveling from Minneapolis (home) to Wall, SD the first day (over 8 hour car day)
~We camped in the Black Hills for 2 nights/3 days then drove to Cody, WY (over 10 hour car day)
~Spent 3 full days driving (and hiking) in Yellowstone (but again, a lot of car time)
~Drove to Jackson Hole, WY (half day in car)
~Drove to Denver to visit friends (9 hour car day)
~Drove to Iowa to pick up grandma (over 10 hour car day)
~Drove to Kansas City to visit family and friends (3 hour car day)
~Drove back to Minneapolis (0ver 8 hour car day)

Sooooooo......the point being, Sam (and his brother) spent a lot of time in a car. Thank God for DVD players. But the real point is that he did so awesome, we have already planned our road trip destination for next summer. Brent and I were so excited and feel that if we can conquer the car, that we can now plan trips like this.

The easiest part of the trip was driving. We were so shocked for many reasons. When just driving locally in the Twin Cities, we have lots of screaming rides. Sam is all about sameness (nothing new for kids with autsim). Who drives what car and who sits where is often times crucial. It has gotten better this past year though. The other thing that is hard for us sometimes is the routes we take to places. His memory is incredible. Many times he can relay to me where we are going before we get there because of the route. So, the problem being, we can't take different routes to places if I tell him where we are going ahead of time. I usually tell him we are just driving for fun and might go to a store to eliminate battle as to which street we turn on.

The great thing about being on vacation, is that every day is new and never the same. Sam didn't know what to expect, which we feared would make things worse or okay. Fortunately that latter was the result. He couldn't dictate which way to drive because it was always new to him with a different routine never to be followed again.

Our only challenge on the whole trip was safety. We thought it would be safe and didn't bother to bring his cute monkey harness. We figured we would be in nature and not in crowds. We kind of forgot that there are cliffs and things in nature that most of us understand the danger of, oops. Sam had no fear at all on our adventures in nature. He could care less if there was a 300 foot drop from us. Our first stop at the Badlands found Sam running straight to a cliff, and left him kicking and screaming mad as Brent pulled him away. I can't count how many times big brother Zach said, "Mom, doesn't he know he could die!!!!" He even had brother worried at times. Let's just say that our stops in mountain areas and canyon areas were a little nerve racking and found us carrying him (Sam reluctant about).

But the beautiful things about Sam on the trip were the things that are autism related. Sam has always had keen attention to detail. One psychologist had told us that this could lead to learning problems down the road because of the distraction it causes him. And yes, it is an incredible pain in the butt when we are trying to walk some place in a timely matter, and he is distracted by even the littlest pine needle on our path. But, on vacation he drew our attention to some of the most beautiful things we could have missed. He would notice some little beautiful bird in the distance, or an awesome rock along the way. He was in awe of the Badlands, because of the color and shape of the rocks. I am not sure how many 4 1/2 year olds would find such amazement at places appreciated more by adults. The Badlands could lose its awe after the first 1/2 hour for some people, but Sam kept it alive for us. With every turn in the road came "totowee toowa" (totally cool) or "toey tow" (Holy cow-mom and dad are Cubs and Harry Carey fans). He could spot the tinyest bug or creature wherever we went, whereas the rest of the family would have missed it.

As we drove upon the Grand Teton Mountains at Jackson Lake, we got out. The first thing Sam said to Brent was, "is dat a pitter or real?" (Is that a picture or real). He was totally serious. It was cute.

I can't wait to post some pics. As the trip continued we saw lots of detail and had amazing fun. It was a dream vacation.

As the trip concluded, we were in Kansas City. We stayed downtown at the Marriot. Our first night there we could not fit the minivan in the hotel underground ramp because of our topper, so we had to park across the street at a different underground ramp. We came up from the parking garage to see that there was a park on top of it. As we headed to the hotel, Sam took off. Brent and I could not catch him. Brent finally got him as he ran inches to the edge of a 3 story cement drop off to the exit side of the parking garage. Sam was not scared. It did not phase him that he would be hurt. Zach was never more scared for Sam. It seems like when we just start to trust him and feel like he "gets it" (about safety, cars, danger, etc...) we always let our guard down. Three months ago, Sam wondered out of the house to the garage in the middle of the night and was locked out until I heard him at 4am. This incident led to us installing a security system. We know that safety will always be an issue, which makes us mad when we ease off and know better. The trip was awesome, but it was great to be "home, safe and sound" for now.