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Light it up BLUE

April 2nd has been declared “World Autism Awareness Day,” a title that is rich in meaning to many people who care for individuals with Autism. Even our U.S. President made an official proclamation this year, in recognition of the day that will be remembered every year in order to raise awareness for Autism.

On this day, and during the whole month of April, a tradition has been in effect by many major organizations that advocate, educate, and raise funds for Autism Spectrum Disorders. In fact, “Light it up Blue,” (where people everywhere are encouraged to use blue lights as a symbol of shining a light on Autism) is a tradition that the wonderful organization “Autism Speaks” has advertised and used to raise Worldwide support for 3 years.

Did you read that right? Did you *really* truly read that phrase “Worldwide support” and comprehend what it means? Because it’s a wonderful thing to raise *Worldwide* support, and to know that people all over the globe are “lighting it up blue” in support of shining a light on Autism.

So today I posted a link with pictures to the “Light it up Blue” website, where many pictures of famous buildings all over the world have changed their lighting to blue for this day, and a friend of mine on Facebook told me it gave her goosebumps.

When she said that I responded to her in a way that drove me to write this blog tonight. I supported those goosebumps and raised her a few by saying the following:

It’s a wonderful, worldwide show of support, but it is also a perfect example of how Autism does NOT discriminate. These different parts of the world aren’t necessarily showing support for Americans with Autism (as is all too easy for us to assume in the USA) – they are showing support for their OWN kids (and for their own people) all over the world who have Autism.

As Americans, we are not alone in our struggles with Autism; and while that may seem a little scary, I think that, in some small way, it unites us – globally. And let’s face it; if anyone can unite quibbling countries from around the world, it’s children.

Now there’s some goosebumps for you.

The pictures shown on the Light it up Blue site are incredible, famous buildings (and attractions) from around the world, literally turned blue for a day to support this cause. Japan, France, China, Hungary, the U.S., Mexico, Canada, Brazil, Egypt, Australia, even Saudi Arabia…my God, people, this is incredible! Autism is very real, very beautiful, very difficult, very global. And it is a cause NOT to be ignored any longer.

So, Light it up Blue for a day, a week, or this whole month of Autism Awareness! Change your porch light to blue, wear blue 5 days in a row, make your Facebook profile pic blue…whatever you can and will do!

And when people ask you “…why are you doing this?” or “what’s with the blue?” You tell ’em. You tell ’em I told you to Light it up Blue for Autism 😉

And then you tell ’em to go check out the picture of Niagara Falls lit up blue, and to just try & ignore those goosebumps 😉

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ASO 10th Annual Autism Walk-a-thon

There is an incredible event coming up in April that includes both a chance to interact with hundreds of unique, wonderful Autistic kids, as well as an opportunity to raise funds for the Autism Society of Oregon (ASO). Join us for the 10th annual Autism Walk-a-thon at Oaks Park in Portland, OR! Here’s the details:

10th ANNUAL AUTISM WALK-A-THON

Where: OAKS PARK, PORTLAND
When: SUNDAY, APRIL 15, 2012
Registration starts 9 am ~ Walk at 10:30 am ~ Oaks Park rides at 11 am
Discounted ride bracelets can be purchased at Registration & will also be sold at the Walk. Plus, Raffle & Entertainment at the Walk.
Individual Registration Fees: $12 for adult, $9 for child (age 12 & younger)
Team Registration Fees: $10 for adult, $8 for child (age 12 & younger)
(Teams must have at least 10 participants and raise a minimum of $250)

Register at: http://www.firstgiving.com/asoautismwalk/10th-annual-autism-walk-a-thon to register and create your personal fund raising page! Cost includes a FREE T-shirt! See the website for details.

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Note from Kristi: If you want to walk with a team, make some new friends, or even just save a little money on registration, join our team! Just follow these simple steps to register & join Team Alex:

1) Go to http://www.firstgiving.com/asoautismwalk/10th-annual-autism-walk-a-thon
2) Click on the “Register” button
3) Select T-shirt size for you & anyone else you are registering, and remember to select the TEAM registration – it’s cheaper!
4) Type in your name, contact info & t-shirt size, then in the space where it asks for your “Team Captain,” type Kristi Zelinka
5) On the next screen, the “Join a Team” option will come up. Just type in Team Alex and it will pop right up. At that time, you can click the “join” button.
6) Pay for your registration & then just follow the directions for finishing up!

Also, feel free to check out my personal fund raising page for Team Alex, to learn a little more about our team’s goals, or to donate if you wish!:

http://www.firstgiving.com/fundraiser/alex-zelinka/10th-annual-autism-walk-a-thon

Hope to see you there!

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Autism night in “Bodyworlds & the Brain!” (OMSI Event)

For my local readers…here is an event at OMSI on Thursday 1/26/12 from 6 – 9. It is Body Worlds & the brain with a focus on autism! OMSI does a great job teaching us about all sorts of things in life, so I am excited to see this event is happening!

Autism Night in BODY WORLDS & The Brain

Thursday, January 26, 6-9 p.m.

Autism Night is a unique opportunity for the local Autism community to interpret BODY WORLDS & The Brain together. Meet researchers, doctors, and experts in the Autism field including representatives from Oregon Health & Sciences University (OHSU), the Northwest Autism Foundation, and The Autism Society of Oregon.

 

Evening ticket prices apply: $19 adults; $14 youth 3-13; $17 seniors (63+) & students (14+ w/ ID)

Check our OMSI’s site for more info!   http://www.omsi.edu/events

 

 

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It Matters how hard YOU work.

There are many good causes in this world, many injustices, and – closest to my heart – many children with special needs. These children  make our heartache when we see their disabilities, especially when, with things like Down’s syndrome, they are so obvious to the naked eye.

Well, I recently came across a video, where a little girl and her mother will change your ideas about feeling “sorry” for these kids. Special needs children are on this earth to rock our world and change our lives.

I really want to encourage you to watch the video posted at the end of this blog – though it is a little long – because it will do just that…change your life, change your outlook. The purpose of kids who are “different” is far greater than we gve them credit for, and it makes my heart swell with pride to know that God has gifted me with one of them.To give you a sneak peek at some of my favorite parts of the video, This little girls’ mother uses flash cards with writing that explains some of the things the little girl wants out of life. Here are some of those points:

“My friends get to have fun at dance, gymnastic, music, and library while I go to physical, occupational, and speech therapy.

I spend all this time working for one thing.

A CHANCE at having the same opportunities in life as my friends. I want to be invited to birthday parties, I want to attend public school. I want a career, I want a home, and I even want to fall in love.

Most people don’t have confidence in me to accomplish these things. The reality is it doesn’t matter how hard I work.

It matters how hard YOU work.”

Wow. Just wow. Click below to watch the video. Have kleenex nearby.

Down Syndrome Awareness – Maddox Lucille

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Our top 21 Best Special Needs Parenting Moments of 2011

Our top 21 Best Special Needs Parenting Moments of 2011:

1) In January, Mommy & Daddy take the family on an impromptu beach trip, and Alex discovered his love for the ocean.

2) In February, Daddy taught Alex about his other love in nature: Snow

3) In March, Alex really started using the best learning tool we’ve ever found: The Ipad.

4) Also in March, Mommy put together a nice, new wooden train table for Alex’s Trains and tracks. Alex proceeded to use the floor instead!

5) In April, Mommy organized Team Alex for the 9th Annual ASO Autism Walk-a-thon. By the time the walk came, Team Alex had 52 walkers and had raised over $2,000 for the Autism Society of Oregon! The increase in support was an overwhelming 800% from the prior year. Because Alex had a hard time walking, Daddy walked with Alex on his shoulders.

6) Also in April, Alex attended his 1st real Easter Egg hunt at a church who provided a special area for kids with special needs.

7) In May, Mommy started the “Mommy4Autism” Blog you are reading today!

8) In May, Mommy taught Alex to make cupcakes; he is such a great helper and he loves to bake. Only problem is that he really, really, likes to break eggs open. Everywhere.

9) Also in May, Daddy taught Alex to say “I love you, Mommy,” just in time for Mother’s Day.

10) In June, Alex got the chance to attend Vacation Bible School at his very own church, with Mommy and his favorite babysitter, Illy, close by. He only made it about 3 days but he loved the music and all the games!

11) In July, while Daddy took Sissy to camp, Mommy and Alex bravely walked to a neighbor’s house to celebrate Alex’s 1st real Fourth of July experience (with fireworks). Alex didn’t like to set off the fireworks, but he liked watching Mommy and playing with the big kids’ motorbikes! He even made friends with a couple little kids from the block!

12) August was a big month! Mommy, Daddy, and Alex (plus Illy) took a trip to an Autism Immersion Camp at Meadowood Springs! What an amazing adventure Alex had as everybody learned more about each other. This is where we learned the “hands to face” technique, and acquired the connector, both of which have been amazing communication tools for Alex!

13) Also in August, during family time at the camp, Mommy strapped a life jacket on Alex and took him swimming and wow, we discovered we have a little fish for a son!DSC09310.JPGThe kid doesn’t technically know how to swim, but you could have fooled us! Alex also adored riding in the canoes with Daddy and other friends!

14) Because of our experience at the Autism Immersion Camp, Mommy learned a very important lesson: to calm down, in order to help Alex calm down. Daddy quickly followed suit and the results have been great.

15) In September, Alex started his first day of Kindergarten! This was exciting, butDSC09660.JPG also disheartening as it became clear that he may not have been placed in the proper program for his needs. Mommy began the process of personally evaluating his situation, entering the classroom and speaking regularly with the school.

16) In October, Mommy carved 4 pumpkins by herself, trying to get Alex interested in the Halloween tradition, to no avail. Later, Mommy braved the craziness of a pumpkin patch for Alex (in the pouring rain), who adored the Hay stack pyramids and the Corn box (like a sandbox, but with corn)! He got to pick out a pumpkin while we were leaving, and guess what? DSC00032.JPGWhen we got home, Alex drew out his first Jack-o-lantern face on that pumpkin (with a little help from Mommy) and Mommy cut it out for him. Yay!

17) In November, Mommy took Alex back to the coast for a little Mommy-son time while Daddy & friends worked on the house. It was not the easiest weekend in the world; we both came down with colds. But Alex adored the experience, which included the ocean (his favorite) and a trip to the aquarium to see the sharks.

18) Around this time, Alex developed an absolute adoration for Daddy’s laptop computer and all the wonderful games it had to offer him! PBSkids.org is where it’s at, folks! Mommy’s always on her laptop, so it wasn’t exactly hard to figure out that he’d soon follow suit!

19) December came around and Mommy’s pursuit of Alex’s education and happiness finally made it through to the school system. Along with 6 other “Alex fans,” we faced pretty much all the special ed educators at Alex’s school and finally made the decision that he wasn’t in the right class for his needs. The meeting was amicable and pleasant, which was a relief to everyone I think! He’ll get to start over in a new environment as soon as the paperwork clears in January!

20) Another exciting moment in December came when Alex finally got to join his little friends at church in their annual Hand Bell choir presentation. The bells were color-coded, and he never really stopped doing his own thing on Sunday Mornings to practice. But Mommy was determined, so we practiced every day after school, and Alex played that yellow bell twice on Sunday morning, then even said his name in the microphone at the end of the program! Yay!

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21) December also brought craft fairs, and Christmas decorations all over stores. Alex decided that Santa and snowmen were pretty cool, as well as all of the sparkly stuff everywhere. He really started to understand the concept of Christmas and presents this year, which was another dream come true for us…he even surprised us further by pointing out Baby Jesus in Mommy’s Nativity Scene.

Th335411_2957045004627_1216556390_33251876_2112514523_o.jpgese are the most precious family & parenting moments from our very difficult year. Mommy and Daddy learned so much about Alex, autism, and maybe most importantly, themselves.

Happy New Year! ❤ Mommy & Alex

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The 12 days of Christmas Break

The Twelve Days of Christmas Break (with a special needs child)

There are about 12 school days when kids are off school for the Christmas holiday season. These days are not so fun for Mommies, especially for those with special needs kids. But interestingly enough, these 12 days reminded me of a song we like to sing at Christmas…

So here’s my own personal version of a classic song to give you a peek into our 12 days of Christmas break (sung, of course, to the tune “Twelve days of Christmas”):

On the 12th Day of Christmas break, my Alex gave to me…

12 eggs a-breaking

11 trains to trip on

10 hours of jumping

9 cars a-lined-up

8 days of whining

7 kids complaining

6 angry parents

5 SLEEPLESS NIIIIGHTS….

4 Body slams

3 Melt-downs

2 injured limbs

And a really messy house to clean.

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Be Aware – for Family & Friends

It is rare that I come across a piece of writing that is so profound in nature that it literally leaves me without words to describe it properly. I won’t do it justice, but let me just say that the following blog post is the best one I have come across that offers enlightenment and advice to friends and loved ones of families with Autistic children.
The tears fill my eyes quicker than you can say “autism” and I can’t stop reading it for all the truth and phrasing that I wish I had been able to communicate as effortlessly as this man did. I want to plaster this on the walls of the world so that everyone reads it and understands what we, the families, are like, what we go through, and what we desire from our loved ones.
Please take the time to read this, and pass it on if it struck you the way it touched me…
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CARA Act Passed!

Some of you don’t know or understand some of what is going on with Autism funding or research, and how the government is assisting families in this area. Well, to summarize, we had a big win this month when President Obama signed the The Combating Autism Reauthorization Act (CARA act) that approved an additional $693 million to support Autism research over the next 3 years. This is exciting because the funds were being put on hold in the senate, and were in danger of being cut.

I am personally doing my best to begin to get involved in the legislation involved with Autism research & awareness on both a federal and state level, and, if somene you love is struggling, I would encourage you to do the same. Anyway, I felt it was important to post this so my readers can be informed of our triumph in Washngton this month! Say what you will about President Obama, but I am thankful that he signed off on this – we need answers and it is no secret that Autism has frequently gotten the short end of the stick when it comes to Federal funding!

Anyway, please click on the link below and read about this act; watch the video with Kerry Magro, an adult with Autism – it is truly inspiring!

http://blog.autismspeaks.org/tag/combating-autism-reauthorization-act/

 

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Life and Death

Facts about Autism

Did you know …

  • Autism now affects 1 in 110 children and 1 in 70 boys
  • Autism prevalence figures are growing
  • 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 $35 billion per year, a figure expected to significantly increase 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

When my son was first diagnosed, I read the facts about Autism above, then studied the statistics below about how much funding went toward research for this overwhelmingly prevalent disorder that seems to be increasing every year. Though the facts have changed a little ( both private & government funding has increased a bit), the numbers are staggeringly sad when it comes to our children on the spectrum.

I have often said that I am in no way attempting to undermine the need for research and funding for children who have diseases like cancer, which could cause early death. But what about LIFE? What about my son’s quality of life, and the future of others like him? What about these children becoming adults in this world without the proper care they need to improve the quality of their existence?

What about the crippling rate at which Autism is rising every year? What about the numbers below, which show how much more prevalent Autism is than many of the other childhood diseases/disorders known to us?

What about research for what causes Autism? Am I the only one who thinks this is wrong? I know money is tight for everyone, but perhaps the “powers that be” should consider the ratios involved and at least throw a little extra money towards finding out how we can prevent ASD in the future…?

Childhood diseases are scary. Death is scarier…we don’t want to lose our kids. But again, I say, what about their qualities of LIFE? Think about it.

Prevalence vs. Private Funding

  • Leukemia: Affects 1 in 1,200 / Funding: $277 million
  • Muscular Dystrophy: Affects 1 in 100,000 / Funding: $162 million
  • Pediatric AIDS: Affects 1 in 300 / Funding: $394 million
  • Juvenile Diabetes: Affects 1 in 500 / Funding: $156 million
  • Autism: Affects 1 in 110 / Funding: $79 million

National Institutes of Health Funds Allocation

  • Total 2010 NIH budget: $35.6 billion
  • Of this, only $218 million goes directly to autism research. This represents 0.6% of total NIH funding.

Source: http://www.autismspeaks.org/what-autism/facts-about-autism

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The Magic on the Mountain

Recently, my husband, my son (Alex), his babysitter (Illy) and I spent 4 days at Meadowood Springs’ brand new ASD Family Immersion Camp with 9 other families. How do I condense 4 amazing days of such valuable information in just a page or so to keep a reader’s interest? Well, I’m going to attempt the most basic summary I can…forgive the choppy writing for the sake of preserving space!

Day 1: Dust, the Connector, and comfort zones:

I am not a camper. I don’t like dirt & the other various treasures that come with “roughing it.” Despite this, we drove out to Eastern Oregon anyway because I knew it would be a wonderful experience for my son and for my family. In short, the camp staff and the ASD counselors (Eric & Steve) took us under their wings and not only got us settled in, but immediately started to work on helping our family in various areas (especially when Alex took off in a swirl of dust & confusion the minute we arrived). We were given anDSC09286.JPG excellent tool called the Connector (http://www.connectorrx.com/connectorrx/), which helped us to keep Alex safe while still allowing him to have fun, connect with us on a whole new level, expel some energy & ultimately, learn new things. I could write so much more on this -just check out the site!

Dinner time resulted in a tantrum (as I knew it would), but no one scowled or scolded, and Eric even helped me calm down by using the Connector to bring Alex closer to me, which calmed *him* down. (Bonus: Alex didn’t tantrum at mealtime *once* during the rest of our stay at the camp!) The parents’ first lesson that night with Eric & Steve happened to be about stepping out of our comfort zones.

Day 2: Teamwork, swimming, and parenting:

After a delightful, tantrum-free breakfast, the parents had another lesson with Eric and Steve, where we all got to know each other a little better, and learned the importance of working together as a team, even though our parenting styles might be different. Additionally, we also learned to practice the art of perseverance, patience, staying calm & constant, and asking for help. During our sessions, the kids and their caregivers got to go roam the grounds, where Alex got to go canoeing, hiking, ride down a zip line, play in a creek & even spent a little time in the craft/toy room. There were so many wonderful things to do at the camp!

DSC09311.JPGLater that day, after some super-fun swimming pool bonding (which was great for our little “fish”), we had some 1-on-1 time with Steve, where we learned to encourage communication from Alex…even when the answer to his requests happened to be “no.” We got to practice a technique where we place Alex’s hands on our cheeks (so he is driven to look in our eyes) when a request is being made. With his hands on our cheeks and a smile on our face, we can confirm to him nonverbally that, regardless of the request or demand or whatever, we are not mad at him. In a similar way, we can also convey concern when he is doing something inappropriate. Another little gem we learned with Steve was the new concept of side-along “time-outs,” which included sitting beside Alex when he could not calm down.

Day 3: New stuff, mousetraps & trust:

DSC09363.JPGOn this day, Alex actually tried NEW things to eat at mealtimes while he sat quietly by our side! During our daily session, the parents got to learn a little more about trust by literally leading their partners through mousetraps. I think the most important thing I took from this session was that it was important for us to allow our family to enter into and overcome obstacles as they arose, and to trust each other in the process. It is in our nature, especially as special needs family, to be wary of “rocking the boat,” but we cannot and will not hide our kids away from the world in order to keep everyone comfortable. We have to take chances and guide our kids through these inevitable “mousetraps” of life. If you aren’t growing, you aren’t learning, and you certainly aren’t living.

On the evening of this 3rd day (our last full day at the camp), we got a chance to have a really good talk with Alex’s babysitter, Illy, who is going off to college in the Fall (dangit)! Every day she was exposed kids all over the spectrum, and she became more intrigued by the puzzle that is Autism. The experience ultimately helped her decide to pursue some studies in Autism during her college career. She is a beautiful person and this is a beautiful thing.

Day 4: Mermaids, Butterflies & Happy Birthday, Alex!

Our last day at the camp was bittersweet. At breakfast, Alex was served his new favorite blueberry muffin cake with candles while everyone sang to him. Our time at the camp came slowly to an end as we had our last session, where we played one last game that reminded us how very like butterflies our children are to the world. Eric also read to us a story about Mermaids in a world of Giants, wizards and dwarfs (http://www.livinglifefully.com/flo/flobemermaids.htm), which brought the whole experience home.

The adults then shared about how the camp had changed our families for the better that weekend. Many didn’t want to leave & have to go out into the real world without Eric & Steve! I know I didn’t! Lots of touching things were said and there were very few dry eyes in the room. There was sad stuff, happy stuff & hard stuff, and it was all good.

But one comment stood apart from the rest, and it came from one of the folks that actually run the Camp. The man speaking teased me about my frustration with all the dust and dirt that was stirred up every time we hiked around the trails (non-camper here)! Then, with tears in his eyes, he explained to me that there was something very special in that DSC09299.JPGdust, that it touched everyone who came there and somehow managed to change their lives for the better in many ways. Magic dust, he called it.

The Magic on the Mountain touched all of our lives during this trip. We all came back still covered in it…and we wore it proudly. When it washed off, we know it left some of its magic on us.

Thank you to Steve & Eric (who came to us from the Pace Place), the staff at Meadowood Springs’ new ASD Family Immersion Camp and the “Magic on the Mountain!” We will never be the same. And that is a very, very good thing.

DSC09404.JPGThe Zelinka Family – Kristi, Duane & Alex – with Illy,

at Meadowood Springs ASD Family Immersion Camp

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