Light it Up Blue and then Join us in spreading the word about Autism this month.

In the month of April, I do as much as I can to spread the word and bring awareness to Autism.  Tonight, I’m lighting it up blue along side some of my most supporting friends and about 1,000 other monuments in the world!    This is such an awesome and easy way to show your support and get involved.  This year autism advocates are encouraging for us to light it up blue all month long.

I think I’m looking forward to our upcoming vacation. Our flight over the USA tomorrow night has me excited and crossing my fingers in hopes we might see some building or a monument lit up blue . What a sight that would be.

That’s right….you heard me right; A VACATION!! I don’t remember what that actually is?  The coolest part about it? It’s just me and Aiden.  I’m so excited to travel with him but more importantly I’m basking in the accomplishments we’ve overcome in order for us to take on such a trip.  First stop….Washington DC then, we’re off to Baltimore Maryland to stay at the Hilton that over looks Camden Park!  From there, we jet set to Boston to spend some time with my sister.  Finally, our trip ends in a day long visit in New York City!  We’re PUMPED!!

This is the first you’ll hear of my stories of Aiden this month. I’ve chosen to write about Aiden’s accomplishments and Aiden-isms.  We have so much to celebrate and one of those things is Aiden’s emerging view of the world and people. Not only is he finding a place in it but, he’s also beginning to understand that he has to manage to continue to find a way to remain it.

Welcome to our blog….Welcome to our life….Welcome to Autism Awareness Month

"Please Join Aiden's Team on November 13, 2010 at Angel Stadium"

Autism Story #30 is an Invitation, announcement, and “Call To Action!”  What better way to complete 30 stories and the end of Autism Awareness Month than to say, “April might be over but we’re not done yet!” On Saturday, November 13, 2010 – Aiden, Jonathan, Richard, Myself and (hopefully) 48 others will make the commitment and walk for Autism as “Aiden’s West Coast Space Cadets” and we want YOU TO JOIN US! This year already, our good friends Vanessa and Paul created Aiden’s East Coast Crew and walked for Autism in Washington D.C.  We’re extending their efforts and doing the same!

We NEED 50 people (TOTAL) to join our team who are committed to finding 5 of their very own sponsors who will donate a minimum $20. That’s $5,000 for Autism Research!

Our family LOVES baseball and the Angels and I’m excited to walk at Anaheim Stadium!  When Aiden was 3, we held our own Walk-A-Thon and raised $4,700 as a small but mighty group.  I vowed then, that I wouldn’t organize something like this again, unless we had something to celebrate….AND WE DO!!  Aiden and his progress are AWESOME! This year will mark 5 years since we received Aiden’s diagnosis.  I’ve never walked for Autism Speaks but felt like they were doing such awesome work that I had to step up and make a choice to give a voice to families affected by Autism.  Autism Speaks is doing some AMAZING things for Autism research and I want to be apart of it.  Imagine what we could do now with so many more friends and loved ones who have grown in their understanding and support of our family and Autism? We should absolutely strive to match or at least beat this number.  Please visit the links below to join our team and make a commitment to raise $100 OR to give a donation directly to our team in lieu of your absence (especially all of our supporters who are out of state).

Join Aiden’s West Coast Space Cadets and Walk With Us Here!

Support us and Make a Donation In Lieu of Your Absence Here

(type in Annette or Richard Deming)

Once, you’ve signed up to join our team, I’ll be hard at work over the next 6 1/2 months getting t-shirts and a team flag ready for us that day.  I’ll also be passing along important rules and guideline information, as well as, offering support to our growing team and communicating answers to questions for their fundraising.  You’ll be able to get information as the walk gets closer here on my blog or through an Event Invite through Facebook.  To start, you can cut and paste the message below in order to recruit your 5 sponsors. Thank you for wanting to make a difference in our lives as well as the lives of millions of others!! **Please join me in my fight to make a difference in the lives of the more than 1 million Americans living with autism today. I am participating in Walk Now for Autism Speaks to help find a cure for autism and to help, Aiden Deming, someone I know personally who is effected by this growing epidemic. Autism is the second most common developmental disorder in the United States affecting one in every 110 children born today (1 in every 70 BOYS). Despite some promising discoveries, the cause of autism is unknown and a cure does not exist. Research is crucial. Every 20 minutes another child is diagnosed with autism. Not only must we find ways to improve the quality of life for children and adults with autism, but we also must find a cure, and soon. Walk Now for Autism Speaks is our chance to make a difference in the fight against autism by raising money for autism research and heightening public awareness. Please join me in my fight as I raise money to help fund essential research. You can donate to Walk Now for Autism Speaks and/or join my team online using the links at the bottom of this page. Donations can also be mailed to Autism Speaks using the donation form located on my page or send me a check made out to Autism Speaks. Thank you for taking an important step in the fight against autism. Donations are tax deductible to the fullest extent allowed by law. Autism Speaks 501 (C)(3) Tax Id #: 20-2329938 Matching gift program: Many companies provide their employees with matching gifts. Please consult your employer on its matching gift guidelines and attach matching gift forms accordingly. ** For More Information about the Walk, Click Here

It’s important that parents never stop fighting for their children!  Children have no voting rights and don’t understand what’s needed to ensure their care which is why it’s so important for adults to speak out on their behalf.  Whether it be cancer, juvenile diabetes, or Autism – children need a voice!  Why not you?  Why not ALL OF US?

Although Autism Awareness Month is coming to an end, I’ll never stop fighting for what is right for my son and other children and families effected by this brain disorder.  We’re too close to being on the right track to finding a cure.

Thank you for listening.

Thank you for commenting.

Thank you for your kind words.

But most of all….

Thank you for all of your support during Autism Awareness Month!

“I don’t get it….he doesn’t look anything like my friend’s son?”

“Really? You’re doing what kind of therapy? I don’t think my cousin’s doing that?”

It’s simple.

The reason why is because ASD (aka Autism SPECTRUM Disorder) affects every child differently.  There isn’t a one size fits all therapeutic or medical intervention strategy either.  Just like their diagnosis, their treatment is on the spectrum.  There are a handful of ways out there to help these children which explains the information hoops parents have to jump through to get to the bottom of understanding exactly what they are.  Once they decide on the program and treatment they want they have to find a provider who not only does it but, has room in their practice or program for an additional child.  Once that’s established, the parents have to figure out how to pay for it?  It’s a merry-go-round that never ends.

If a family is lucky to have caught the onset of Autism early, they can push forward with intensive “Early Intervention” but only until the age of 3.  Once they pass 3 years of age they become the school districts responsibility and we all know how education is doing now.  Especially in California.  Even in the school setting, the spectrum of interventions, the view of the children effected by Autism are all still very different.

I know the parents of Aiden’s classmates see it.  We have an Autism class right on our campus.  They walk by everyday and I think they’re amazed at how Aiden looks and acts nothing like what they see.

So in the future, remember – Autism doesn’t always look like Rainman and it doesn’t always look the way you might think.  I happen to be partial to Aiden’s good looks but he certainly doesn’t look like he has Autism doesn’t mean he doesn’t have neurological damage.  Autistic children are the epitome of the cliché, “Never Judge A Book By It’s Cover.”

"Being disconnected from the Autism Community makes me feel guilty."

After receiving a diagnosis of Autism one of the first things families look for is another child or family with similar symptoms leading up to the diagnosis and similar issues effecting the child.  For instance, a child who was delayed in their physical development often requires physical therapy intervention.  A parent who is recently diagnosed is going to look for other parents with children who were also physically delayed.  It’s part of the gauging system we all use to compare where (during normal development) our child should be.

I was no different.  I immediately looked for other families with similar symptoms to Aiden’s in hopes of getting a glimpse at what this journey was going to be all about.  I did find those families and they helped give me hope of what my life with Aiden could look like 5, 6, 7 years down the road.  In fact, looking for that support landed me here, in the blogging world.  I’ve since found parents looking for answers themselves or have turned beginning communications into friendships!

"Blogging has been completely therapeutic for me."

(That’s a shout out to you Stephanie!  Who also designed the film strip logo on the top of this blog)

In the beginning this community was my family.  I felt so at home in their presence and their inspirational stories.  The first two years of receiving the diagnosis are the hardest because you spend most of your time completely dedicated to getting all the information you need to have a complete and conclusive therapeutic and medical intervention plan in place.  In my mind, I couldn’t go anywhere or do anything until this was done.

After time, as Aiden got better and better I felt myself drifting further and further a way from my Autism family.  Slowly I was rejoining the world of “normal” (whatever that means) but still, I was going to a different place.  The stories I once found inspirational, I started to feel sad.  The stories of wrongdoings by medical doctors and school districts used to infuriate me and after two years of my own battles, I just felt tired.  The only group left of this community I felt any attachment to were the newly diagnosed families.  As traumatic as it is to receive the diagnosis you never forget and so I still felt like I could accept the role of mentor.  Outside of that, I could completely move on.

Walking away from the Autism Community left me with huge feelings of guilt.  Somehow I felt like I had an obligation to stay but in essence, I had outgrown them.  The ironic thing is, when things start to go bad I run to them immediately looking for answers to whatever the situation is at hand.  What kind of person am I?  How selfish of me to abandon their support when things are good and then use them when things turn bad?

So because of the disconnect I have with parts of the Autism Community and for this reason alone, I dedicate 30 days to Autism Awareness Month in April and maintain my role as a mentor to other families who reach out to me.

"Aiden LOVES the Solar System!"

Aiden didn’t always like space.  His first signs of showing above normal intelligence as a toddler was his view of the world through shapes.  I know I’ve shared the story before about Aiden recognizing a door as a rectangle first before he ever called it a door.  And a window was a square before it was ever a window.  A clock a circle and so on and so on….you get the picture.  And that was exactly it!  He saw the world in pictures.  Thousands and thousands of pictures sit in a rolodex in his mind.  Just the other night he started talking about the Simpson movie.  He said his favorite part of the movie was the beginning.  He went through the details of every scene as if he was delivering a story board presentation at an animation studio.  The amazing thing is.  In all the detail that he expressed verbally, laughed in the interim while he was sharing, Richard and I realized Aiden hadn’t seen that movie in over 15 months.  And not just that.  We only allowed Aiden to see it once.  I’ve always believed Aiden had a little genius in him.

When Aiden was in preschool he wasn’t reading yet but, he knew his alphabet.  He used to spell out titles of movies with the pieces of his marble run toy.  In essence, he was building the title.

"My little astronaut. Age 3"

As a baby, Aiden loved the Baby Einstein videos.  After I bought the Baby Galileo video he was hooked!  From the age of three his love of space and the planets grew and grew.  Now, movies, places, pictures, books, anything SPACE Aiden can get his hands on he loves!   It doesn’t even have to be age appropriate.  Aiden had 8th grade science text books that he loves to look at.  I was watching my little Aiden morph into a little Galileo.  Each element of space grew.  It was as if he was starting a collection. Piece by piece he’d add space related information into his basket of things he loved most in the world.  Planets grew to Stars and stars grew to constellations. Constellations grew to Quasars and Quasars grew to SuperNova’s.  Soon after the moon was the topic of the day and then the moon grew to the sun and the Sun grew to the entire Solar System.  After that, the Solar System grew to Galaxies and Galaxies grew to the creation of the Universe and the Big Bang Theory.  Now, Aiden loves studying Earth and earth’s resources.  So my 6-year-old son can tell you about and draw you a diagram of the layers of the Earth, platetectonics, the water cycle, and how earthquakes and volcanoes happen.  He’s Amazing!  And if you didn’t know, my sole inspiration for becoming an Earth Science teacher.

We have to be careful of Aiden’s obsession with space.  With the Autism, I lose him quickly to his own little world – no pun intended.  But the reality is, I love how inspired and eager he is to keep learning.  I’m determined to make him proud!

"It's simple...Aiden is my whole world. Which means Autism is my whole world."

I decided to dedicate Story #25 to the unspoken words (at least to my face anyways), “Why are you so obsessed with Autism?  It’s your whole world and quite frankly, I just can’t deal with your drama. I have my own life to worry about.  OK, I get it, your son has Autism – move on already.”

I’ve lost friends and disconnected with family members because of words like these.  Some to my face, some subtly by ignoring, and others who stay quiet.  It’s the one part of dealing with the diagnosis I didn’t expect.  I think I naively believed I would be embraced, encouraged, and supported by everyone I knew.  Perhaps the problem is I am and I just don’t recognize subtle and quiet gestures.

Even my dedication to posting 30 Autism stories isn’t my intention to jam Autism Awareness down peoples throats it’s quiet selfishly my way of dealing with my guilty feelings for not being more active in the Autism Community throughout the year.  So….once a year, for 30 days, I recognized how important it is to promote Awareness and I apprehensively let people in.

I may only hear from a handful of you who are out there reading these stories but, I know there are more.  On April 1st when I made the commitment to promote awareness through 30 Autism stories my blog had 4100 hits.  That’s an accumulation over 3 1/2 years, which is how long I’ve actually had this blog.  But since April 1st, 2010 and the introduction of the stories partnered with Facebook, my blog has had 1,588 hits as of Day 29.  So people are out there, reading…they just don’t say anything (except from the same 5 people who have commented). I think that’s interesting and believe my intention to educate and promote awareness without the fear of someone else’s ignorance or intimidation getting in the way of their desire to know more is working.

It’s simple.

Aiden, being my first-born son is my whole world.  Aiden has Autism.  That means Autism is now apart of that world.  Whether it be April or October, Aiden and his Autism are my Whole World.  What else would a mother do?  And spare me the concern over Richard and Jonathan.  They are ABSOLUTELY apart of that world because Aiden is their whole world too.

Temple Grandin is a Professor at Colorado State University teaching Animal Science and is the most successful autistic adult in our community right now!"

Temple Grandin is one of the most successful Autism stories I’ve heard and who has changed the Autism Community and paved the way for believing the impossible is possible!

From Temple Grandin’s Website:

“Temple Grandin, Ph.D., is the most accomplished and well-known adult with autism in the world.  Dr. Grandin didn’t talk until she was three and a half years old, communicating her frustration instead by screaming, peeping, and humming. In 1950, she was diagnosed with autism and her parents were told she should be institutionalized.  Most professionals and parents assumed that an autism diagnosis was virtually a death sentence to achievement or productivity in life.  Dr. Grandin has become a prominent author and speaker on the subject of autism because “I have read enough to know that there are still many parents, and yes, professionals too, who believe that ‘once autistic, always autistic.”

Even though she was considered “weird” in her young school years, she eventually found a mentor, who recognized her interests and abilities. Dr. Grandin later developed her talents into a successful career as a livestock-handling equipment designer, one of very few in the world. She has now designed the facilities in which half the cattle are handled in the United States, consulting for firms such as Burger King, McDonald’s, Swift, and others.

Dr. Grandin presently works as a Professor of Animal Science at Colorado State University. She also speaks around the world on both autism and cattle handling. At every Future Horizons conference on autism, the audience rates her presentation as 10+.

I’ve seen Temple Grandin’s mother speak of her story and it’s inspirational.  Right now she has an HBO Movie about her life.  Check it out! She’s an amazing woman and has such insight not only to her own struggles with Autism but in understanding why autistic children behave the way they do from an autistic perspective.