Unity, the 7 year old daughter of Erica Sandoval, was the inspiration for her non-profit Exceptionally Excited Kids. Erica is an on-line champion who recruited over 5,000 people to send emails to congress in support of autism legislation. Her daughter is a champion as well, overcoming the obstacles that autism creates.
E-Advocate Network: How do you juggle being a the head of a nonprofit, an autism activist and navigating the healthcare system for your daughter?
Erica: My inspiration comes from my 7 year old daughter Unity, who was diagnosed with autism when she was 2 years old. Her diagnosis was extremely hard for me at first. What I knew about autism was what I saw in movies like “Rain Man” and I thought there is no way my daughter has that! After the acceptance kicked in, I became obsessed with learning everything I could about autism and searched everywhere for programs and support for myself and Unity.
There was virtually no activities classes or support groups except for the occasional meeting at her school. Unity’s previous school was an incredible support for me and I served on their board for almost three years so I could give something back to them. Later, after still struggling to find appropriate resources for us, I started a nonprofit organization with my friend Sue, who also has a child with a disability. We offer exactly what I needed when Unity was first diagnosed, and still need today, which is various means of support including exercise, socializing, family support and more.
E-Advocate Network: What were the challenges and highlights of starting your own non-profit?
Erica: There are many of both. The biggest challenge is funding. We are waiting for our 501(c)3 to come in and once we get that a lot more doors will open. It is in the government’s hands… As of now, we rent a room in a local gym, but they only give us 2 hours a week. That is nowhere near enough! We desperately need our own building.
There is such a need for the services we provide; there are over 3,000 children in my town of Hemet alone that qualify for special education, and 2 hours a week will not do! We have been working like crazy giving presentations in and around our community and we have a few coming up that could really be promising. Otherwise, we are stuck waiting for our nonprofit status that will allow us to receive federal grants and such.
One of our board members actually spoke with Mary Bono and she has agreed to speak with the IRS on our behalf to help move along our application! Isn’t that amazing?! In the mean time, practicing giving presentations about EEK is great. Especially for me because I have an enormous fear of speaking in public. Everyone in EEK teases me that I am starting to “come out of my shell!” Which is our phrase to represent a turtle coming out of a shell. The turtle is our logo.
Finally, the benefits are tremendous. I don’t even know how to put them into words without crying. My whole view on the world and other people has changed so drastically. All I can say is that this is exactly what I am supposed to be doing with my life, and I will continue to do this work for the rest of my life. EEK is my family forever.
E-Advocate Network: Your daughter inspired the founding of EEK. How has EEK changed her life as well as others?
Erica: EEK has changed Unity’s life in many ways. She is much more open and seeks out friendships whereas she wouldn’t before. She has learned a lot about being patient and waiting her turn to participate. My other daughter Eden, (who is 4) also has had a lot of benefit from EEK. At first I was worried about the questions she might ask me about the other kids; such as “why does he look like that” or “why does she talk that way?” It’s amazing because she has never once asked me anything like that.
I realized she only sees the person. She does not see anything “wrong.” She accepts people as people. That is the greatest gift! I have heard lots of other children ask those questions before, about Unity even, and it’s only natural… but Eden doesn’t see the differences, she only sees that we are all the same.