Bond update

It's been a while since my last post about Bond. Mom has been waiting to hear from Denise about the next step, and she got an email from Denise yesterday giving an update. Denise has had Bond staying with a teenager in her area to get him used to living in a home and to teach him how to go to school. She plans on having him stay there another three weeks or so, and then we will set up our next visit. It's pretty exciting! I will keep you posted as I know more!

It's World Autism Awareness Day!

I was diagnosed with autism on February 25th, 2003. At that time 1 in 250 children were affected by autism. In the past six years, the number of children with autism has skyrocketed to 1 in 150. Every 20 minutes a family will be told that their loved one has autism.

Know the facts and the warning signs--BE INFORMED! If you know a child who is displaying some of the symptoms of autism--tell their parents. The earlier the intervention, the greater the chance of "recovery". I'm posting a little about autism, some funding facts and what the signs are. This information comes from Autism Speaks. Check out their website: http://www.autismspeaks.org/.

Also, PLEASE check out this video http://www.autismspeaks.org/sponsoredevents/autism_every_day.php. It's 13 minutes but worth the time (get your kleenex before you sit down).

Here we go (this is kind of a long post--sorry):

Autism is a complex neurobiological disorder that typically lasts throughout a person's lifetime. It is part of a group of disorders known as autism spectrum disorders (ASD). It occurs in all racial, ethnic, and social groups and is four times more likely to strike boys than girls. Autism impairs a person's ability to communicate and relate to others. It is also associated with rigid routines and repetitive behaviors, such as obsessively arranging objects or following very specific routines. Symptoms can range from very mild to quite severe.

Did you know…
*1 in 150 children is diagnosed with autism
*1 in 94 boys is on the autism spectrum
*67 children are diagnosed per day
*A new case is diagnosed almost every 20 minutes
*More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined
*Autism is the fastest-growing serious developmental disability in the U.S.
*Autism costs the nation over $90 billion per year, a figure expected to double in the next decade
*Autism receives less than 5% of the research funding of many less prevalent childhood diseases
*Boys are four times more likely than girls to have autism
*There is no medical detection or cure for autism

Incidence vs. Private Funding
*Leukemia: Affects 1 in 25,000 / Funding: $310 million
*Muscular Dystrophy: Affects 1 in 20,000 / Funding: $175 million
*Pediatric AIDS: Affects 1 in 8,000 / Funding: $394 million
*Juvenile Diabetes: Affects 1 in 500 / Funding: $130 million
*Autism: Affects 1 in 150 / Funding: $42 million

National Institutes of Health Funds Allocation
*Total 2007 NIH budget: $29 billion
*Of this, $80 million goes directly to autism research. This represents 0.28% of total NIH funding.

Know the signs
*Does not babble or coo by 12 months
*Does not gesture (point, wave, grasp) by 12 months
*Does not say single words by 16 months
*Does not say two-word phrases on his or her own by 24 months
*Has any loss of any language or social skill at any age

Having any of these five "red flags" does not mean your child has autism. But because the characteristics of the disorder vary so much, a child showing these behaviors should have further evaluations by a multidisciplinary team. This team may include a neurologist, psychologist, developmental pediatrician, speech/language therapist, learning consultant, or other professionals knowledgeable about autism.

Now you know! If you have any questions my mom would love to talk to you. Send her an e-mail at the e-mail address on the right.

Bond came to school!

Yesterday Bond came down to Stanwood to do a home and school visit. Denise came to the house (I was at school) to check out Bond’s new home. Bond checked out my bedroom, the backyard, around the house, and Pippin (our family dog). Bond took a tour of the backyard and my bedroom before he was able to say hi to Pippin. Once he did say hi to Pippin, it was brief, and then he walked around the living room checking things out (this is exactly what Denise wanted to see!!!)

After the home visit Bond, Mom, and Denise came to school to show my class my new helper. Bond was quite the celebrity from the moment he walked into the building. He visited at the front office for a bit, took a walk down to the ASSIST (special ed.) classroom to meet one of my teachers, and then went down to my general ed. 2nd grade classroom. Bond sat next to me while Denise answered the other kids’ questions. At one point I got up and ran to a different part of the classroom, and Bond got up and followed me. The other students had some great questions, and it turned out to be a successful visit.

So what is our status at this point? Well, Mom is going to schedule a time for me to go up to Brigadoon for another visit, and then Denise is going to start scheduling trainings and more home visits. Probably by May, Bond will come and stay with us for a few nights at a time and work his way into our family life. We are all very excited to start this phase! Here are some pictures of yesterday’s school visit:

Bond was a hit in the hallway!

Me, Bond, and Mrs. Kay

Waiting for the other students to arrive.

Just hanging out
(that is a picture of me and Bond on one of our visits to Brigadoon that I'm looking at)

I'm as happy as can be

Doggie kisses

YUCK!

The other students are arriving

Denise is talking about what Bond will do for me...

and answering lots of questions from curious 2nd graders!

Talking about different types of service dogs

Mrs. Kay hanging out with me

My peer mentors

One of my friends

My class!

Locksmith or criminal?

In order to minimize bathroom toiletry damage, Mom and Dad lock their bathroom door when I'm in their room (when they remember to--if they forget I have some fun with shaving cream--which was the case last week). One day they needed to open the door quickly so they took a wire hanger and popped out the lock with it. So yesterday I got into their closet and grabbed a wire hanger. Mom and Dad gave me a strange look but let me walk away with the hanger. Mom heard a strange noise coming from my bedroom (she had an idea of what I was doing but couldn't believe it) so she went and checked on me. I had locked my bedroom door, went inside my room and started to pick the lock on my door!

**This makes more sense if you know that Mom and Dad had to put a lock on my door on the outside so that if I get up in the middle of the night they can put me back in my room and lock the door so I can't get out.**

So now they're wondering if I'm going to be a locksmith or a criminal!

The other day they didn't lock my door and I woke up at 3:00am, went into my sister's room, turned her light on, jumped on her, found a bottle of blue tempera paint, took it to the bathroom, and painted the sink :) nice.

In other news:
Yesterday we went up to Brigadoon to visit Bond. Mom, Dad, Bond and I went on a little walk while we were there. For the first part of the walk I was tethered to him, and the other part I held his leash. I hung out with him, and Mom and Denise talked about the next steps. Denise is coming to the house in a couple of weeks to do a "home visit". She'll be checking out what our house is like and start scheduling days for Bond to come and stay with us. He'll stay with me for a few days/week at a time to ease into our routine here while he's still in his training. Graduation date is set for October 25th, so on that date Bond should be "officially" mine.

Here are some pictures of my visit:

Here we are on our walk with me tethered to Bond.

Walking along...

Mom unclipping the leash so I could walk him.

Walking Bond back to Brigadoon.

Hangin' out in the office after a hard day's work!

Happy birthday to me (and I outdid myself today)

Today I celebrated my 8th birthday by waking up NICE and EARLY. Mom isn't even sure how early I woke up, but I took a nice little snooze at school today! Mom made cookies for me to take to school, and Dad, Cameron and Madison came by in the afternoon to share them with my 2 classes. We had one of my favorite foods (pizza) for dinner tonight, and seeing as how I'd already had a ton of cookies at school, Mom put candles on the pizza and they sung Happy Birthday to me that way!!!! After dinner I opened some presents, got to play in shaving cream (on purpose), took a bath, and got to go play at McDonald's!!

Now here is where it gets good.

Just when Mom and Dad are beginning to think I've grown out of my escaping "issues", I decide to give them a story for the blog.

So like I told you earlier, Dad, Cameron, Madison and I went to McDonald's to go play on the playground there. Another dad with two kids was there as well. While they were gearing up to go, our two families were talking in front of the exit between the play area and restaurant. Somehow in the middle of all of those people (6 to be exact), I sneaked through. The family left and Dad realized that he hadn't heard me making any noises, so he sent Cameron and Madison out to find me. About that time a lady behind the counter asked Dad if "that was his son that went outside" (it was). So Dad ran outside where he found me....sitting in a red pickup truck with a gray dog and his sixty-something year-old owner. Imagine you're this guy. You're minding your own business, ordering some food for the road, you drive up to get your order, and while you're paying for your order, your passenger door opens and an 8 year-old boy (who doesn't talk) crawls up into your truck, closes the door behind him, and hangs out. That is where Dad found me. Now imagine you're my dad, running outside because you can't find your son, only to see him sitting in some strange man's (running) pickup truck....Mom is trying to think more about that poor guy's perspective and not what it was like to be in Dad's shoes. It's easier that way.

So, on that note, if there was still a question as to whether or not I still "need" Bond, the answer is a definite YES! It's a good thing I get to go see Bond in 2 weeks!!! I'll keep you all posted!
Love,
Aaron

It Matters to This One

My dad wrote a song for the Autism Sings fundraiser last Friday night, and I want to share it with you all. He dedicated the song to the 17 year-old girl who put the concert together, as well as to everyone who has helped me and my family with my special needs. For all of you who have made a difference by contributing toward my dog, prayed for me and my family, and follow this blog, we dedicate this song to you.

It matters to this one

A father and son were taking a walk on the beach
Enjoying the sun and the warmth of the sand on their feet
When suddenly they came upon – as far as the eye could see
A thousand starfish drying out – the ocean just out of reach

So the boy knelt down and picked one up
And threw it back in the sea
Then another and another were saved

Till the father had had enough
And he said, “Son, you can’t save them all.
It doesn’t really matter anyway”
But the son said

It matters to this one, I can change a life
Even one tiny act of kindness Can make the world more bright
I may not save every one, But I can do my part
You can call me crazy, But someone’s got to start

It’s a great big world out there with lots of problems to be solved
At times it seems an overwhelming task
But we can’t afford to give up
We can’t be cynical and hopeless
We dare not lose sight of what’s important
Or forget the power of love
We need our children to remind us to think small

It matters to this one, We can change a life
Even one tiny act of kindness Can make the world more right
We might not save everyone But we can do our part
Let the world call us crazy, But someone’s got to start

It matters to this one, you can change a life
Even one tiny act of kindness Can make the world more right
You might not save everyone But you can do your part
Let the world call you crazy, But someone’s got to start

Let the world call us crazy, We can each touch one heart

Words & Music by Jason Chollar (c) January 2009

Autism Sings concert update & next Brigadoon visit

The concert last night was amazing. I was even able to sit through it (although Mom bribed me with sour gummy worms). My dad (of course) was awesome! I did manage to escape Mom's grip at the end of the concert and run through the emergency exit. LUCKILY the alarm didn't go off, so Mom was relieved about that one. I also ran up to the stage then into the back during intermission, but Dad was right behind me so I didn't get too far away--just enough to get him a little exercise!!! Last night Mom was really wishing Bond were there to help keep me corralled! But the event was a success--there were 330 people there and over $4,000 was raised for Autism Speaks. Yay!

Mom emailed Denise, and we will be going to visit Bond on Feb. 16th. I'll make sure to have Mom take lots of pictures and see what the current status of my new friend is. :)

UPDATE ON AUTISM SINGS CONCERT

Because of the flooding, the autism concert has been rescheduled to this Friday--here is the new info--I'll be there, and I hope to see some of you there too!

Autism Sings
Friday, Jan 16th
Stanwood High School Performing Arts Center
7:00 pm
$5.00

A good cause for those of you in Washington

On Friday night a Stanwood High School senior, Tara Smith, is going to be putting on a benefit concert to raise autism awareness, and money for Autism Speaks. Her brother, Noah, is 12 years old and is also affected by autism. Tickets are $5 a person, and there will be a silent auction as well. She has some great acts lined up, and my dad may even be getting up there. :) If you can make it to this performance it will be worth your time, and it's a great cause! There is an article in today's Everett Herald about the performance, and why Tara is doing this. Mom and Dad are going to take me, so I hope that I will see some of you there!
Aaron

Friday night (Jan 9th)
Stanwood High School Performing Arts Center
7:00 pm
$5.00

BE THERE!!!

I don't stay out of trouble for long

I could only be "good" for so long (other than the fact that I've cut off my tracking bracelet three times this week). Someone (Dad) left the bathroom door open, so I sneaked in there and emptied/smeared everywhere: the hair gel, shaving cream, shampoo, soap. Madison was put in charge of me while Mom cleaned up so that I couldn't make another mess while she was cleaning that one. Christmas break is over in 9 days--so Mom and Dad have to hang on just a little bit longer! Maybe going back to my routine will help them out a bit! Have a Happy New Year!!!
Love,
Aaron