Sharonsweb Autism Foundation
Helping others help themselves. Networking through social media. Connecting parents and helpers with medicaid waivers. Income and fundraising through eBay. Making obsessions and interests productive. Thinking outside the box.
Sharonsweb.com was created in 1999, when Sharon Smith was pregnant with her 3rd child. At that time, the website was just a hobby. She had started selling on eBay and then tinkered with virtual shopping carts on her website. Always looking for bargains or unique items and sharing them with others.
In 2001, middle child Noah was diagnosed with autism. Adriana was already showing signs of autism so she was diagnosed shortly after. Sharon began researching Autism and found that Asperger’s Syndrome fit oldest child Quinn. So Quinn was tested and suspicions were confirmed. All three children were on the autism spectrum.
Sharon began networking with other families, participating in research studies and of course changed the theme of the website to autism awareness. There were so many therapies and products to help children with autism but most were very expensive and would be hard enough to afford with just one child. So the family signed up for various waivers.
“As a middle class family, we are not able to get services that are income based. Currently we are STILL on the waiting list for Indiana’s Autism Waiver. We were told when we signed up that it could be up to a 20 year wait! Yet early intervention is necessary in working with children who have autism.”
So Sharon decided that the only way to be heard was to create a foundation. This would enable her to write for grants, participate in special needs events as a non-profit and really network with others to do something for families like hers. She found that there are companies set up to share a 501(c)3 number with smaller organizations like hers. That saved a lot of money and hassle of applying for her own.
In 2008, the Smith family moved to Derby, England with Joe’s career at Rolls-Royce. Although England had autism schools and even school specifically for Asperger’s, in the middle of England there just didn’t seem to be much awareness. The children seemed to be more in residential schools and not out in the public. Well, people quickly noticed the Smith family! Sharon became involved with Derbyshire Autism Services Group and also setting up at car boot sales and other events with her own autism awareness items.
The family took many holidays to destinations such as Turkey, Egypt, Canary Islands, Tunisia, Spain, Portugal - spreading autism awareness everywhere they went!
In 2010, the 2-year contracted assignment was complete and the family moved back to Indiana. Sharon keeps in touch with some of her British contacts through FaceBook. There is still a section on the website about some autism services in the Derbyshire area!
The children had grown so much over the past 2 years. Noah, who had been the runner (meaning he would just take off and the family would be in a panic searching for him), was now 12 years old and could safely take short walks on his own. This was only after years of working with him, he would go to a park supervised, then just followed and finally the trust was built up and he would return home on his own within 30 minutes or so.
Within a week after returning from England, the family was staying with Sharon’s mom in Indianapolis as they were purchasing a smaller house while renting out the larger house in Plainfield. Noah was on a familiar walk to a local church playground, he had been there dozens of times the previous summer when we visited and also several times that week. Police came to the front door. Sharon asked if Noah was bothering someone at the church. The policeman basically said that Noah is autistic, can’t do anything and needs 24 hours supervision. Joe and Quinn were in Canada on a fishing trip while Adriana and Noah were with Sharon and her mom. The police told Sharon to “SHUT UP” and would not let her explain that Noah is fine to walk to the park while Adriana must be monitored at all times. Sharon was taken to JAIL in handcuffs in front of her 2 young, autistic children! The minister had called because he had never seen Noah.
However, after 26 hours in jail, Sharon made arrangements to speak to a women’s group at that church (video on both the website and the Sharonsweb Autism Foundation FaceBook site) as well as hired a lawyer to get her record expunged. Sharon now had a story to tell but also had to have the record cleared so that she could continue volunteering in her children’s special ed classroom field trips. Her foundation which had been idle during the move to England now has a greater purpose of spreading autism awareness and especially the spectrum disorder. Children with autism and asperger’s syndrome ARE able to do a lot. Communication is the main issue with them. What if the child were deaf or spoke a foreign language? Or an adult with those issues? How would they be treated differently than my child was treated or how Sharon was treated?
Sharon decided to re-start Sharonsweb Autism Foundation. She began telling her story. There was an issue with the larger company who shared the 501(c)3 so they have split ways. It is now time to do this on her own. Through networking at special needs events, Twitter, FaceBook, eBay Giving Works auctions (Sharonsweb Autism foundation is a registered charity and eBay sellers can give a percentage of their sales to charity) and just word of mouth, Sharon has made contacts who are on the same page with her.
The foundation will soon have its own 501(c)3 which will enable more connections such as Gifts In Kind, a company that provides donated products for the cost of shipping/processing. Sharonsweb Autism Foundation has always been a more grassroots version of Autism Speaks. This group networks too but on a larger scale.
However, as a mom with 3 children on the spectrum, Sharon doesn’t pay anyone a salary or really have any overhead costs to run the foundation. Sharon just does what she does for her children and will try anything to help them, sharing information along the way. Although Sharonsweb Autism Foundation doesn’t quite have the same ring to it as Autism Speaks, Sharon kept the www.sharonsweb.com website and likes to think of it as working with people in her own little virtual world, Sharon’s Web.
Sharon works with other groups on fundraisers and goes beyond just autism. Classmates of the Smith children may have other diagnoses but many of the developmental or social delays are similar. Sharon likes to compare notes and match up people with similar issues to find what works best. She takes note of the teachers who give that extra effort and makes sure to thank them with small gifts or nice letters. She listens to the parents and to the teachers and always tries to see both sides often being the mediator to get everyone to play nice and work on common goals.
Autism Sunday is an annual event created in the UK. This ties in well with Sharonsweb Autism Foundation’s theme of Jesus Makes All The Pieces Fit. The connections that Sharon has made over the years seem to be Heaven sent and she definitely has a purpose from God. With an eclectic group of friends from all over the world, I don’t consider my foundation as Christians-only, that is just MY religion. As with special needs, I don’t want any discrimination. Although I do have T-shirts that are Christian themed on eBay Giving Works, I do have just autism awareness items as well. However, with the arrest at a church, my current campaign will be getting churches more aware. I want to see all churches do something for Autism Sunday in February. Wear the Jesus Makes All The Pieces Fit t-shirts in April during Autism Awareness Month.
Programs who currently work with or who have worked in the past with the Smith family will benefit from donations to Sharonsweb Autism Foundation. Noah and Adriana wear tracking devices on their ankles from Project Lifesaver. Many local fire departments use this tracking device for people who tend to wander away - including autism and Alzheimer’s patients. The Smith family personally contributes to their local Project Lifesaver program. As not all fire departments are aware of this program, Sharon spreads the word to other families online. This is a non-profit group and is not government funded. Project Lifesaver is possible through donations and fundraisers.
Special Olympics is another group with local chapters. Ideally Special Olympics is free to families but this group depends on fundraisers as well. Sharon is working with friends on a car/motorcycle show in Avon, Indiana in May with proceeds going to Hendricks County Special Olympics.
While living in England, Sharon became certified to teach Zumba fitness. However, as a resident alien, she was not allowed to work or even volunteer! Zumbathons are fundraisers to raise money and to get people to do Zumba. Trying to get herself and her children moving (especially now that Noah is basically under lock and key until there is more awareness in the Indianapolis area), Sharon is working with other Zumba fitness instructors to do more Zumbathons for autism and to create some easy routines for special needs families. Zumba, like autism, is worldwide and just one more way that Sharon can network.
There are so many things that families can do to create autism awareness in their own areas. Sharonsweb Autism Foundation hopes to help others DO something. The larger autism groups can’t reach everyone and they don’t always have that personal touch. Such as the lyrics in Miley Cyrus’s Ice Cream Freeze - “Do like I do just follow my lead!”