Author’s Note: Generally the GiveBackIn section is reserved for stories about nonprofit groups and organizations. On occasion there comes a long a person’s individual story that deeply touches and equally amazes me. This is one of those times.
The difference between a helping hand and an outstretched palm is a twist of the wrist.
~Author and Journalist Laurence Leamer, “King of the Night”
Rob Gorski has three sons with autism, a chronically ill wife and little income, but he doesn’t want your pity. He wants awareness.
In January 2010, Gorski started a blog, Lost and Tired: My Reality in Autism x3, to chronicle his life with three autistic sons and to raise awareness about autism.
“I want to dispel the misconceptions surrounding autism and show how our lives are affected by it each and every day. Only when people understand can they show compassion for those touched by autism and their families.”
Autism Speaks, the largest advocacy and autism science organization in the U.S., defines autism as “a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders (PDD).” Often referred to as “Autism Spectrum Disorders,” the spectrum includes neurodevelopmental disorders such as Asperger Syndrome, Rett Syndrome and Childhood Disintegrative Disorder.
The CDC estimates that around 1 in 110 kids in the Unites States have an Autism Spectrum Disorder. The Autism Speaks website reports that it is more common than “childhood cancer, juvenile diabetes and pediatric AIDS combined.”
Gorski’s three sons–Gavin (11), Elliott (4), and Emmett John (2)–all suffer from varying scales of the autism spectrum.
When Rob’s wife, Lizze, was diagnosed with a particularly aggressive form of fibromyalgia a few years ago, he was forced to quit his job as a paramedic to become the primary caretaker of the entire family.
With no income and loss of primary insurance, Rob began repairing VCRs and DVD players as a means to make extra money. He has a one-man general contracting company with his brother where Rob takes care of the business side from home.
Rob also builds custom ROMs (read only memory) for the Android smartphone in order to spread autism awareness. He is in the process of starting a 501c3 charity in order to launch his Android4Autism campaign. However, time and cost-associated stumbling blocks for setting up the corporation is slowing down the process.
“It started out that was just going to take donated devices and install custom ROMs, built from the ground up for Autistic kids. The only apps on the devices would be educational apps and nothing else. These devices are small and much easier to handle so the kids do very well with them. I got a ton of support from the Android community and the idea and potential were getting bigger and bigger. I realized that I needed to do this the right way and that was to form a non-profit and then launch my Android4Autism campaign. Our purpose is to get a device into the hands of as many Autistic kids in need as possible. Along the way I picked up support from Intellijoy, the number one developer of educational apps on the Android Market. They are providing their entire software lineup free of charge for each device.”
In dedicating his life to autism awareness, Robb wants others to know that autism isn’t who the kids are, it’s what they struggle with daily.
“I want people to understand what autism is. I want them to know that it’s not all sunshine and roses. My goal is not to paint autism in a negative light but instead be realistic and honest about our experience. I feel too many people sugar coat things to the point that the public has the wrong impression and a poor understanding of the struggle facing families like mine. My hope is that by sharing our story in as honest a way as possible the world will be a better place for my kids in the future.”
Financial struggles aren’t the only concerns for the Gorski family. Exhausting days and lack of support without breaks make for stressful lives.
The two oldest boys are in two different schools and the family travels a 100 mile round trip each day when therapy appointments are factored in–all taken care of by Gorski and his wife. On occasion, grandparents on either side of the family will take the boys–one at time. Otherwise, the couple receives no assistance and finding qualified respite care has been difficult, so they rely on their parents to fill that role.
“We never have a night to ourselves and all the day-to-day stuff is my wife and I. Our parents do what they can to help…As far as friends go, aside from our online friends, we don’t have many. People generally either don’t believe things are this complicated for us or they can’t handle it and they leave. We aren’t a TV show and there are no actors. This is our struggle, our journey…and it’s all true.”
So, how can you help?
“To be honest, we don’t hear that very often,” says Gorski. “But if you want to help a special needs family you can start by educating yourself.”
Other Ways to Help the Gorski Family
Donate to the Gorski family directly (donation button in sidebar).
Read and Subscribe to his Examiner Autism column. It’s free to you and Robb gets paid for pageviews and subscriptions.
Read Robb’s blog and follow him on Twitter.
Purchase “The Vault” medical binder from the Gorski “store.”
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