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