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