Monday, May 4, 2015

Walk Now for Autism Speaks - Atlanta, GA - April 26, 2015

The weekend of the walk was filled with many emotions. There was laughter, cheers, and even a few tears.  Before I get into our experience at the event, I would like to tell you what Autism Speaks is, and then I would like to tell you what it means to me and my family.


Walk Now for Autism Speaks, the nation's largest grassroots autism walk program, is Autism Speaks' signature fundraising and awareness event, taking place in communities across the United States, as well as in Canada. Powered by volunteers and families with loved ones on the autism spectrum and local businesses and companies that employ those on the spectrum, this successful grassroots fundraising effort not only generates vital funds for autism research but also raises awareness about the increasing prevalence of autism and the need for increased research funding to combat this complex disorder.

To explain what Autism Speaks means to us I'm going to start at the beginning of our story.  Ethan was born June 8, 2012.  He hit all of his milestone markers when he was supposed to, he even started talking some at Christmas time in 2013.  Over about a week he said mommy, daddy, baby, kitty and a few other words.  However, after Christmas the words stopped all together.  Ethan went in for a doctors visit sometime in January for a cold. His doctor asked about his speech and showed concern when we told her of his regression.  She suggested that we see a speech therapist, so we did.  We had our first appointment with Donna sometime in February of 2014.  After meeting Ethan and having a few sessions with him, she told us she felt he needed to be tested for Autism.  This brought about lots of tears and lots of worry.  Donna gave us the number to the Marcus Autism Center in Atlanta http://www.marcus.org/  We had to wait several long months before Ethan's evaluation.  In the meantime, Donna was able to teach Ethan a little sign language to get the communication going between us and him.  He learned to sign Please, Thank You, More and All Done.  Four days before Ethan's second birthday, the appointment at Marcus finally came.  Ethan met with two different doctors that day.  After an entire morning of testing they had their diagnosis.  Ethan tested on the Autism Spectrum.  The Doctors spent a lot of time talking to us, telling us what they found and what it meant for Ethan.  They told us he was very smart and tested above his age in many skills, however, his speech and communication skills were about a year behind.  They were very confident in telling us that Ethan would have no trouble learning to talk because of how smart he is, but they said he will also face many challenges.  Their biggest suggestion to us was to put Ethan in a School environment. On our way out the door, the doctors at Marcus gave us a lot of information and one of the sources came from Autism Speaks. "The Autism Speaks 100 Day Kit for Newly Diagnosed Families of Young Children was created specifically for families of children ages 4 and under to make the best possible use of the 100 days following their child's diagnosis of autism." From this link: https://www.autismspeaks.org/family-services/tool-kits/100-day-kit you can download the whole kit.

Upon the suggestion of the Doctors at Marcus, we enrolled Ethan, and his nanny Crystal in school at the Creative Learning Center in Clayton.  CLC was very understanding of our needs and concerns. When we asked if Crystal could sit in to help watch over Ethan they were on board with it.  It wasn't until orientation, when we first met with Mrs. Charlotte, that we knew we had made the right decision on schools. Mrs. Charlotte told us that she had been doing a lot of reading about Autism and she had even purchased some sensory toys to help calm Ethan if he had any melt downs.  Now with three very special people watching over Ethan, Mrs. Charlotte, Mrs. Veronica, and Crystal, he really started to open up.

Another part of Ethan's journey was actually supplied by the state of Georgia in the form of a program called "Babies Can't Wait".  Through this program, Ethan was given a special instructor that would visit three times a month at his school and an occupational therapist that would come to our office after Ethan got out of school in the afternoon.  Mrs. Jill, his special instructor generally helps Ethan with all forms of communication from eye contact to conversation.  Mrs. Chris, his occupational therapist is helping with Ethan's texture issues, fine motor skills, and his eating aversions. "Babies Can't Wait" will help support Ethan until he turns 3 in June.

Now, almost a year after his diagnosis, Ethan recently scored on his age level in cognitive speech.  This means he is talking on a normal level.  We owe every bit of his progress to the early detection of his autism.  This is why we chose to walk for Autism Speaks.  Having an autistic child in a small area like Rabun County is not easy.  There aren't many resources like there are in Atlanta and even Gainesville. We need to raise more awareness in our area in hopes that more families could have success stories like Ethan's.  We, Ethan's Parents, were lucky in the fact that we work for family and could take off from work to go to his speech sessions or drive to Atlanta for his evaluation.  There needs to be more resources in this area for those who can't just leave work or who can't afford the gas to drive to Gainesville once or twice a week for special therapists. With the recent passing of Ava's Law http://www.wsbtv.com/news/news/local/families-rejoice-after-passing-avas-law/nkjqg/ families will have more help from insurance companies, so now we just need to get the resources closer to home.

Now that you know why we walked, we would like to share our experience at the walk.

We stayed in a hotel with a pool the night before the walk so that Ethan could do a little swimming

He wasn't too sure at first but soon warmed up to the idea of being in the water

watching the busy street outside of the hotel

Father/son t-shirts on display

Chillin' watchin' cartoons before bedtime.

Ready for the walk bright and early

And Here We GO!

Ethan's Handy Helpers at the Starting Line

Sweet little cousin Harper

Holding Memama's hand from the stroller 

Even some Stormtroopers came out to show support



Uncle Mustard hamming it up


Over 15,000 people in attendance


Cousin Hunter, Memama and Ethan holding hands

Memama and Da

Uncle Jonathan with cousin Harper




Cousin Hunter took over 



Aunt Tonya and Lauren

Aunt Melinda, Aunt Tonya, and Lauren


Uncle Mustard giving Ethan a ride and a better view





This sorority was clapping, cheering and offering high-fives at the finish line




Ethan's Handy Helpers
Mustard, Tonya, Jonathan, Hunter, Kyle, Ethan, Lauren, Bill (Da), LaVerne (Memama)
Harper, Melinda, and Jimmy

The bounce house was his favorite after walk activity








Managed to find some shade in the parking lot

The after walk lunch



Thanks to friends, family, and members of the community, Ethan's Handy Helpers raised over $4000

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