Blessed Beyond Belief

The fun kind of ice.

I guess there's a part of the country right now who isn't having so much fun with ice.  We've wanted to take the drive to McCall to see the annual Winter Ice Carnival since we've moved here.  It's a good two hour + drive up into the mountains.

We watched the temperature drop to 1 degree.  It actually didn't feel that cold to us.  In fact, we didn't use most of the cold winter clothes that we brought.

The ice sculptures were really amazing.  This one, 'camelot' won the grand prize.

This one was very intricate.  We didn't realize that there were faces carved into the trees until we were up close.

Think they picked a winner??

Here's the slide of torture.  Not really.  Despite the look on his face, I think the first time was fun.  I don't think he would have gone the second time if it wasn't.

This car was missing the heater.

It doesn't stay cold enough for long in kuna to get this effect.  So pretty, huh?

That's the lake behind us.

Tim is holding Will's 'item' from the gift shop in the Pancake house that we went to for brunch.

There was a section of town that had all the silly booths of cheap crap you could buy.  Not to mention all the carnival food for mega bucks.  We didn't waste any money there.

Some good photo ops though.

Russell got tired of walking.

This was Candy Land.

The veggies out front of the hospital.

The day ended with fireworks over the lake, but really they felt like they were right over our heads.  Only Tim and Will left the car to watch.  The rest of us watched from inside the car.  It was so loud I was surprised Will enjoyed it.  Though at one point he told Tim, 'I'm tired of holding my face up'.  

We drove home after the show.  It was a good day and I'm glad we took the time to go see this.

A little story about our day in McCall.

We had a true autistic meltdown today.  Several of the ice sculptures in McCall where built to play on.  This one in particular was made with a long slide.  The four kids went up to the top.  Russell and Will came down first.  Will liked it but said he was nervous.  Tim had gone to get a map of the town so that we could find the rest of the ice things. When he got back we told the kids to go again so that Dad could see.  So Russell and Will went again.  This time when they came down they somehow slid so that they both bashed their arms into the side of the ice.  Will got up and started to cry.  It was a sad, I'm hurt sort of cry.  I rubbed it and took off his jacket to look at it and tried to convince him that it was fine and wasn't scratched.  Within seconds his sadness turned into pure rage and he started screaming the loudest, highest pitched voice he could.  There was a crowd of people at this ice sculpture and I didn't look, but I'm sure they were all wondering what exactly happened to this kid to make him scream like a banshee. It was horrible.  He just kept screaming and I just wanted to get him out of there.  The car was parked very close and we were on a busy street.  I was so afraid that he was going to continue to freak out and start running heading straight into the street.  So I held onto to him and Tim and I got him to the car.  I told everyone to stay outside and I took him into the car to try to calm him.  It took longer than I thought it would.  He was very angry.  It was like he needed to blame something for his hurt arm. He kept talking about the stupid ice and it was all the ice's fault.  I really have not seen him do this in quite awhile.  Especially not in public.  It was a tad torturous for all of us.  The rest of the day was touch and go.  Mostly good, but we could tell he was having somewhat of a rough time.  On the way home he started talking about the stupid ice and how he could melt it so it couldn't hurt him anymore.  He even went as far as saying that he thought this was going to be a good day, but it turned out not to be a good day.  Tim tried to convince him that one bad thing didn't have to ruin his whole day and then he pointed out all the fun things we did.  I'm not sure he was convinced.  It's times like today that help us not forget that we have a child with autism.  It's times like today that break your heart because you know that your child is not behaving badly but rather reacting to situation in the only way he can at the moment.  Reacting in a way that makes everyone stop and stare and wonder why.  Including us.  It reminds us that we are not experts.  I only did what I thought MIGHT work.  And then hoped and prayed that it would work.  Eventually it did, or maybe it didn't.  Maybe it just ran it's course.  But I tried, we tried.  I am thankful that these are not daily occurrences, not even monthly.  I'm not sure why I share this with you.  Take it for what it is, what you may or may not understand it to be.  I certainly don't understand it all the time.  It just is.

It's late and I'm tired.  Tomorrow I'll post our fun pictures of the day.

It was a great birthday

I was spoiled almost to the point of guilt and embarrassment.  But I have to say that this was the best part:

Being in the arms of the people who love me.  

Truly blessed beyond belief.

Because I can.

I loved this cake.  The pink candy hearts made such an impression on me.  Thanks mom.  Just look at my ringlets, the chubby cheeks, wrist and fist.  Oh, and the dress.  Or was it a top?  Doesn't matter. Cute cute ~ wish I still had it.  I'd hang it in my closet and look at it everyday.

I really should have just left it at that.  But I'm going to forge ahead and share this gem with you.  Let's start at me and go clockwise, shall we?  First of all - the outfit.  This was an exciting find at the 5 dollar clothing store.  Even at the time we couldn't decide if they were pajamas or not.  We decided not.  I said 'we', right?  Not only was I happy to wear this ensemble, but I had a partner in crime as noted to my left.  Out of respect I won't reveal the identity of said partner.  And look - my brothers who so wanted to be a part of my 13th birthday.  Is that a calculator watch on Jacob's wrist?  Marshall must have thought - hey, if she can wear her pajamas then I can show up in my underwear.  MOM! can you PLEASE get them outta herrrrrreeeeee....!

The 14th birthday.  Note the progression in fashion - the addition of makeup and a very short hair style ~ the start of the rebellion. Another favorite cake.  Pink frosting, the beatles and made by mom, what more could you want?  Costco cakes didn't exist yet.  They don't compare anyhow.  One of my presents this year included a poster of Jon Bon Jovi.  with big hair.  I still have it hanging in my bedroom.  just kidding.

Oh, this one was fun.  My 21st.  I was a sleep deprived new mom fresh out of a near fatal gallbladder surgery and 11 days out of from the northridge quake.  The combined trauma ran deep.  That night we had the biggest aftershock.  We were all sleeping on the living room floor.  Mom got up and ran for the door and instead of opening it put her hand through the glass pane.  Surprisingly no damage done to her hand.

Good times.  Today I am very grateful for my 36 years and to have family and friends who go out of their way to make me feel special. Thanks for taking this trip down memory lane with me.

Here Kitty Kitty....

Our very own Miss Maggie was in a production of 'The Amazing Adventures of Robinson Crusoe' put on by the Missoula Children's Theatre.  She was cast very appropriately as Leonard the Leopard.

All the kids did a fantastic job ~ especially considering they only had one week to practice.  But I have to say that I think Leonard had the most entertaining part.

Watch your back Russell, that's one vicious kitty.

Watch her RAWR, dance, and sing:

 

All Today

Snow.  Hasn't snowed really since mom and dad left several weeks ago.  Woke up to a fresh thin layer on the ground.  Always makes for a late school bus.

Russell and his ipod.  Yes, that is Russell under the hair.  And yes he plays his music much too loud.  I'm guessing much like we did with our walkmans - remember those?

Meanwhile, back outside waiting for the bus, Tim makes the most of his wait time by shoveling the sidewalk and driveway.  You know - you gotta do SOMETHING when you have no lawn to mow.

Bus finally arrives and Will gets on - happily.  In fact, Monday was the only bad day this week.  The rest of the week he did fine and no protesting.

UH-OH.

Somebody is being naughty.

So very.....

busted.

Miss Autumn brought home a nearly straight 'A' report card!  She ROCKS!

Last but not least - our bread and butter. the water that floats our boat.  the be all and end all to our existence. Just kidding.  sort of.

The big order ready to ship off.  It's always a relief to get this one done.  Impressive, huh?  That's weeks and weeks of hard work, money, time, and lots of gluten free love.

OH! and Tim and I took a rare trip to the movies this afternoon.  We saw 'Gran Torino'.  It was an incredible film.  So awesome.  You must see it.

Wow, I didn't know this.

Autism Screening Tops Obama's Medical To-Do List

January 21, 2009 01:06 PM ET | Nancy Shute | Permanent Link | Print

Autism tops Barack Obama's medical to-do list, according to the new president's website. Whitehouse.gov launched at 12:01 pm yesterday, even before the new president had taken his oath of office on the Capitol's West Front. Autism is the only disorder or disease mentioned explicitly in Obama's 24-point agenda. Heart disease and cancer don't get the call. Neither does diabetes, or other chronic diseases. But there are four hefty bullet points addressing autism. Obama called for:

1. Increased funding for research, treatment, screenings, public awareness and support services for autism spectrum disorders.

2. "Life-long services" for people with autism spectrum disorders, as children and as adults. Many parents struggle to find and pay for screening and treatments for their children, but there is even less coverage and capacity for adults with autism-based impairments

3. More funding for the 2006 Combating Autism Act, as well as improving state and federal autism programs.

4. Universal screening for all infants for autism disorders, as well as re-screening for all 2-year-olds. This is the biggie; children are currently screened only if parents or pediatricians voice a concern, so too many children aren't diagnosed until they enter elementary school. The earlier treatment starts, the more effective it is, and a national screening program would help reduce the number of kids falling through the cracks. It would also be a huge undertaking, at a time when both government and privately insured health care is foundering.

That second bullet point would be a huge help for families who are struggling to provide care. In a recent survey, 52 percent of parents of children with autism said their family finances were drained by treatment and care, compared to 13 percent of typical families.

The 2006 Combating Autism act promised almost $1 billion over five years for autism research and development, but Congress hadn't appropriated $200 million per year, even before the economy hit the skids. The Obama manifesto gives a big fat hint that for autism, at least, the hard times cited in the new president's inaugural address won't mean big cuts in funding.

Still, universal screening for autism will be a huge challenge. There's no blood test that can be used to diagnose autism, as there is for hereditary diseases like galactosemia and sickle cell, which are screened for using a heel stick while a newborn is still in the hospital. With autism, parents and doctors instead need to observe a child and look for delays in language, social interactions, and gross motor skills. The Centers for Disease Control and Prevention recommends that pediatricians screen children during well-baby visits at 9 months, 18 months, and 24 or 30 months. (Here's the CDC's page on screening for autism.) But many doctors don't get around to doing those screens, and until very recently the recommended tests weren't sensitive enough to pick up mild autism spectrum disorders. Early screening for autism is a terrific idea. Making it happen will be a tall order, even for the can-do Obama team.

Tags: CDC | autism | Barack Obama | parenting | medical screening | children's health | Obama administration

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DISABILITIES

"We must build a world free of unnecessary barriers, stereotypes, and discrimination.... policies must be developed, attitudes must be shaped, and buildings and organizations must be designed to ensure that everyone has a chance to get the education they need and live independently as full citizens in their communities."

-- Barack Obama, April 11, 2008

Barack Obama and Joe Biden have a comprehensive agenda to empower individuals with disabilities in order to equalize opportunities for all Americans.

In addition to reclaiming America's global leadership on this issue by becoming a signatory to -- and having the Senate ratify -- the UN Convention on the Rights of Persons with Disabilities, the plan has four parts, designed to provide lifelong support and resources to Americans with disabilities. They are as follows:

First, provide Americans with disabilities with the educational opportunities they need to succeed by funding the Individuals with Disabilities Education Act, supporting early intervention for children with disabilities and universal screening, improving college opportunities for high school graduates with disabilities, and making college more affordable. Obama and Biden will also authorize a comprehensive study of students with disabilities and issues relating to transition to work and higher education.

Second, end discrimination and promote equal opportunity by restoring the Americans with Disabilities Act, increasing funding for enforcement, supporting the Genetic Information Nondiscrimination Act, ensuring affordable, accessible health care for all and improving mental health care.

Third, increase the employment rate of workers with disabilities by effectively implementing regulations that require the federal government and its contractors to employ people with disabilities, providing private-sector employers with resources to accommodate employees with disabilities, and encouraging those employers to use existing tax benefits to hire more workers with disabilities and supporting small businesses owned by people with disabilities.

And fourth, support independent, community-based living for Americans with disabilities by enforcing the Community Choice Act, which would allow Americans with significant disabilities the choice of living in their community rather than having to live in a nursing home or other institution, creating a voluntary, budget-neutral national insurance program to help adults who have or develop functional disabilities to remain independent and in their communities, and streamline the Social Security approval process .

Autism

President Obama and Vice President Biden are committed to supporting Americans with Autism Spectrum Disorders (“ASD”), their families, and their communities. There are a few key elements to their support, which are as follows:

• First, President Obama and Vice President Biden support increased funding for autism research, treatment, screenings, public awareness, and support services. There must be research of the treatments for, and the causes of, ASD.
• Second, President Obama and Vice President Biden support improving life-long services for people with ASD for treatments, interventions and services for both children and adults with ASD.
• Third, President Obama and Vice President Biden support funding the Combating Autism Act and working with Congress, parents and ASD experts to determine how to further improve federal and state programs for ASD.
• Fourth, President Obama and Vice President Biden support universal screening of all infants and re-screening for all two-year-olds, the age at which some conditions, including ASD, begin to appear. These screenings will be safe and secure, and available for every American that wants them. Screening is essential so that disabilities can be identified early enough for those children and families to get the supports and services they need.

 

5 MLK Day years ago

Does that even make sense?  Ok, so that was January 2004.  Kids had a day off school.  Autumn proudly announces that it's Martin Luther King Jr.'s Birthday.  Apparently they learn that type of stuff at school. I say, 'why yes it is!', and thought the subject would be dropped. Nope. Then she asked how we were going to celebrate it. Huh?  I said what any worldly parent would say, 'uh? I don't know.' And then she said, 'Let's make him a cake!!'.  Cake?  Sure!  any reason to eat cake!  I think Kim must have been working because Jordan was over for the day.  So they set out to make a MLK cake. Here it is.  Nifty huh?  Makes me proud.

Here's Will 5 years ago.  We had this mini tramp outside and he loved to go and jump on it.  I now know that this was a way to regulate his system and his sensory issues.  The language you hear is about all he had.  No reciprocating language, in fact he usually didn't even acknowledge that you were talking to him.  Was completely in his own world with his own agenda.  This was when we thought, believed, and hoped that all he needed was some speech therapy to get him going.  How wrong we were.  Though it's good to see this and to see how far he has come.  We still struggle to get him to respond to us and to not dive to far into his own world for too long.  Progress is good.  So says our new Prez, huh? 

Oh, and yeah I sometimes miss the old house and yard.  There was a certain freedom that came with our big dirt lot, but I NEVER miss opening my doors or windows and hearing the 118. 

I Dare YOU.

The night before last we all watched a movie that Tim had ordered from netflix.  I Am Sam is not a movie you should watch unless you are prepared to be jolted out of your comfy world into the world of the mentally handicapped.  Autumn had to leave once during the movie, claiming it was too sad and she would cry.  She came back 10 minutes later.  I'm not sure but I think Tim and Russell choked back tears more than once.  I held it together and only once felt like I would cry.  But that's only because I kept my emotional shield up and wouldn't allow it in.  They all really liked the movie and I told them that I hated it.  Worst movie ever.  That's not true.  It's a very powerful movie and whatever you may think of Sean Penn - wow, I don't know if he got an oscar for this or was even nominated.  But he certainly deserved one.  I noticed a lot of autistic symptoms in his character, but they never said he had autism.  In fact 'autistic tendencies' was only mentioned once by a lawyer in court.  But it was apparent.  I don't know, maybe if you don't have any personal experience with people on this level it might not hit you as hard.  It will make you think and it will make you take a better look at your own life and the things you take for granted.  Any idiot can produce a child.  Any idiot can claim to be a parent and pretend to be one. This man wasn't an 'idiot' (quite smart actually), but probably shouldn't have been a parent. In the end it is clear that parenting is not all about intellect.  Watch it if you dare.  I dare you.

He makes it crystal clear.

This was taped to the front door one morning this week.

I'll make a real blog post soon.  I'll leave you with a photo I snapped today while we were watching Autumn ice skate with her Girl Scout troop.